Countdown to BMT!

[squirrellypoo]

I posted my story a few months ago (http://forums.marrowforums.org/showthread.php?t=864) but haven't had a chance to update much since then, what with juggling hospital visits, work, and my social life...

But my bone marrow transplant admission date is rapidly approaching, and this seems an appropriate place to keep a running saga as it goes along. I had my pre-transplant clinic appointment yesterday, so I know a lot more specifics than I did previously, too.

2 June - admission to Derek Mitchell Unit (dedicated BMT ward) at King's College Hospital, London, UK, under the watchful eye of Prof Marsh and Prof Mufti
3 June - chemo for "mini transplant" starts. I'm getting Fludarabine (http://www.cancerbackup.org.uk/Treatments/Chemotherapy/Individualdrugs/Fludarabine), Busulfan (http://www.cancerbackup.org.uk/Treatments/Chemotherapy/Individualdrugs/Busulfan), and a very new one, Campath (http://www.campath.com/), that attaches antigens onto the surface of the donor's T-cells or something like that. Apparently it's fresh out of trials...
11 June - stem cells from an unrelated matched donor

It's nice knowing I'm in the best place in the UK for BMTs, but at the same time, the statistics are a bit frightening because they're all for BMTs as a whole, and I feel like I should be above the odds since a) I've not got cancer nor have I already been weakened by years of chemo and b) I'm young and (at least before I got sick) very fit and healthy. But since there's very few cases of Aplastic Anaemia that get BMTs, it's almost as though the Profs are developing my course of therapy as they go along and what the research would suggest is best, too.

The only thing left for me to do is get my Hickman line inserted on Thursday (May 28). Oh, and pack up lots of activities to last me 6 weeks!

Anyone have any experience, either at King's or with the same chemo drugs, or have any advice on what to pack? I'm not quite sure how I'll feel, and there's no amount of reading that can predict it either!

[Neil Cuadra]

We have our calendar marked. Good luck!

As far as what to pack, I suggest asking if they will let you wear your own clothes. If so, bring a supply of comfortable clothes, e.g., nightgowns, pajamas, loose T-shirts and sweatpants, etc.

Wearing your own clothes instead of a hospital gown can make you more comfortable and relaxed. Since comforts are often in short supply at hospitals, you should get 'em where you can!

[Vera W]

I'll tell you what I am bringing and maybe I will give you some ideas. My transplant doctor said that it was best to wear cotton because the Chemo meds can flush your skin. I am bringing cotton PJ's and all things that button or zip up the front. I have been raiding my husbands closet for large button up cotton shirts. I am bringing sweat pants and a couple of long sleeve fleece zip up sweat shirts..I know I will be cold with the air conditioning. Also my robe and slip on shoes to go to the shower in!I have two headscarves and I am going to bring a knit ski cap for sleeping in to keep my head warm. My laptop, books on CD and my CD player with headphones and a battery charger. Books, if I feel like reading. I hate skinny pillows, I am bringing my king size pillow. I bought a dust cover for it. Some favorite pictures, a throw blanket. Hard candy for dry mouth and a chap stick. All toiletries I am bringing are new and unopened. New slippers with hard bottoms and I will probably get some new walking shoes to walk in and ride the treadmill etc. I bought a clipboard and some paper so I can write while sitting in bed if I feel like doing that..Oh and a soft sleep mask in case the light is too bright.. I have been doing my research! Can you think of anything else? My stepson put games on my computer but I an not a big game person. I am not bothering with a bra with the hickman unit! Also lots of warm socks!!

[launch]

Hello! My step-son had a stem cell transplant approx 5 yrs ago and is a "Brain Cancer Survivor" today... I sent Vera's list of items to see if he had any additional items to recommend.... here's his reply to Vera's compiled items...

"... she has a pretty good list. The only other thing I brought was a dvd player to watch movies. For the intangible, I would recommend having a routine everyday as it made the time pass for me to know what i was doing each hour. Not necessarily the same stuff everyday but I would schedule a massage or when I was taking my next bath, etc. Also, she may already have this included in her books or cds, but I found reading something uplifting everyday was crucial..."

(NOTE: They had activities listed at my transplant facility in Chicago, including on-site massage therapists.).

Hope this helps... God Bless you Always... I wish you the best of luck and the best of health....

[squirrellypoo]

Hey thanks everyone! To be honest, it hadn't even occurred to me that I wouldn't be allowed to bring in my own clothes! I know my family will need to launder them for me so I know, therefore, that I'm allowed them at King's.

I'm already planning on bringing in plenty of pyjamas and loungewear, plus a new dressing gown and slippers, my iPhone, my laptop with a 3G card (the rooms have tvs and wifi, but I'm assuming the latter isn't free and my 3G is a good deal) and an external harddrive. So I can watch dvds on my computer, but I'm also bringing a tiny portable sewing machine along with me, too, along with packets of projects to make that I've been assembling over the last month or so. I absolutely love to sew, and I can't imagine going a week without sewing something, let alone six, so my future in-laws got me this great little machine I can pick up with one hand. And as you'd expect, I'm sewing up a bunch of caps out of teeshirt material before I go in (it's on my to-do list for the long bank holiday weekend).

I am bringing cotton PJ's and all things that button or zip up the front. I have been raiding my husbands closet for large button up cotton shirts.Is it really important that they close up the front? I've not had a Hickman line yet but I figured they'd be able to access it from a teeshirt neck - am I wrong?

All toiletries I am bringing are new and unopened.
Is this necessary, too? Because I'm thinking that you'll use them when you're there for chemo and you still have some germs on you, so how is that any different from using them a week before you get in? (sorry, I'm not trying to play devil's advocate, I'm just trying to understand as it's the first I've heard this stuff!)

ride the treadmill etc.
whoa, you get a treadmill in your room? I was feeling pretty good about having a tv and an en suite!

Oh and a soft sleep mask in case the light is too bright..
oh I sleep with my eyes half open so I wear one at home anyway. I do miss the basement bedroom I had a few years ago!

I'm also wondering about stuff like towels, but I suppose I need to email my nurse specialist about a packing list anyway. All they've said to me about it so far have been 1. Bring a soft toothbrush and 2. you can pretty much bring in whatever you want to pass the time.

I'm planning on working my way through all five seasons of The Wire. That's a season a week or thereabouts. ;)

[Vera W]

I'm sure if you have lose fitting over the head garments it would be fine, I am trying to make it as easy as possible, plus I have a little tendinitis in my wrists. It was what was suggested to me and it will be easier for the nurses!
I was suppose to be admitted to a different hospital and they were adamant about sealed products. I went out and bought all new things. At first I read on line about the University not to bring any, that everything would be provided for me but my list of things to bring said to bring your own..However it did say not to bring a toothbrush!! Different hospitals have different policies. The first hospital said I had to have all of my clothes laundered and sealed in a plastic bags! The rooms are hepa-filtered and you are right germs are everywhere but I am hoping that there are a FEW less in the hospital! Do what makes YOU comfortable!
Some hospitals have exercise rooms. UCSF does not. I was told that the physical therapists will bring exercise equipment to your room.
Also in the states most large hospitals have WIFI available for free. I can play CD movies on my laptop. I do have a small CD movie player and it could be easier to look at while I am in bed.
There are a lot of programs available, massage, tai chi,stress reduction,guided imagery,meditation,yoga..lot's of support groups..these are all at another UC hospital and you are suppose to be able to go there by shuttle bus.I don't know how you can go any where with 0 blood counts so it will be interesting to find this all out.
The best thing is that my best friend lives only a few miles away and she will be with me every day. The weird thing is that we hardly ever see each other any more because we live so far from each other!
Take care, Vera

[squirrellypoo]

haha thanks Vera. I sent a quick email to my nurse specialist about these packing issues and he said we could talk about it on Thursday when I'm there to have my Hickman line put in (meanwhile, I'm getting another bag of red and an HLA platelet tomorrow since I was so low this morning, with a lovely patch of petechiae across my chest).

I can't even imagine them letting you transfer to an exercise room, let alone another hospital! I've been told under no uncertain terms that I will not be allowed to leave my room (and en suite) for the duration of my time there. No naturally I'm hoping for lots of cold and drizzly weather!

And that's great you'll get to spend so much time with your friend. My mom is flying over from the States on Friday and will be staying with us and helping me recover until she has to be back at school in early September. I don't think I've spent that much time with her since I graduated high school!

[Robsocal]

Vera has lots of great suggestions. You really want SOFT light garments that button up in front. Later on you can weat t-shirts, etc. but I was so weak for a while that even lifting a shirt over my neck while dealing with my port lines was a real pain in the butt. My IPOD was great when I couldn't sleep at night and there was nothing on TV. Joke books! Stuff that makes you laugh! All my toiletries had to be new and unopened also... take no chances, just get trial size. Towels at City of Hope were awful so I brought good towels from home & bring a good pillow. Toilet paper was Motel 6 quality at COH and I had good stuff brought in. Also good quality, non-scented soap for showering. There was a period of time when even the slightest scent made me nautious, but that was just for a short while. Every time someone called and asked if I needed anything I took advantage of it - they really do want to help. Also Vera mentioned hard candies, yes! Lets see... slippers with rubber soles, gym shoes for walking around when you are allowed and cotton sweats for gym time. I wore beanies on my bald head to help keep warm. Comfort is key! There will be a period of time when you can't leave your room but for me it wasn't too long. I was allowed to walk around the floor (with mask and rubber gloves.)

Best wishes to you, you will be in my thoughts and prayers. If I think of anything else I will let you know.

Rob

[squirrellypoo]

BMT coordinator rang this afternoon, less than 24hrs before I was due to go in, and the donor has now said they're unavailable on that day. I absolutely fell to pieces, and I have no more energy to talk about this right now. I'm not likely to find out my new date for several days. Practical considerations aside, this feels like a massive, massive blow, and I still have to look at everyone I know sending me well wishes tomorrow for something that isn't happening tomorrow now.

I think we're going to get out of the city and have a picnic tomorrow.

[Joan]

What a blow. So sorry the waiting game continues. Hang in there.

[Vera W]

Waiting seems to be the nature of the beast! I still don't have dates! Keep your chin up at least we are blessed with a donor and someday we will be looking back on it all!

[squirrellypoo]

Over a week now and still no news whatsoever. The Profs have stressed again that I'm an emergency case and we need to do this immediately, and apparently have been leaving messages with the American BM registry (which tells me the donor's American, news to me!) and not getting anywhere.

This is beyond frustrating. I can't make any plans. I can't enjoy my days. I'm just a jittery zombie running back and forth to hospital for transfusions and checks most days of the week. My bags are packed, and I have to be ready to go whenever they call. I've never been an anxious or nervous person but this delay is really changing me into a nervous wreck and I hate it.

Worst is that I can't come up with a single plausible reason why someone would postpone on such short notice like this. What do they possibly think my life is like? Do they think I'm doing this for fun or something?

[Vera W]

I know it is hard not to fret but when I was in a panic about losing my first donor I called the national bone marrow registry and they told me that they kept in very close contact with the donors and things are being monitored every step of the way. The bone marrow registry Knows the importance of this for you! If it was more than a postponement they would be telling you that. We are sick and not working but it helps to keep in prospective that the donors probably have to schedule off work to donate for us after all they are volunteers. Or there could be a family emergency. I think that the people in the program are very dedicated and take it seriously. I am sorry that you are going through this. My new donor is having two separate dates to donate so I am sure they are trying to work something out!

[squirrellypoo]

thanks, Vera. I'm actually still at work most days though! The bills won't stop while I'm sick so I've got to earn as much as I can while I can still come in...

finally some good news from my nurse!!

New admission date: 29th June
Stem cells: 8 July

And I just got word that my brother is extending a layover on the 27th to spend a few days with us so it looks like I'll be able to show him around. I just can't get excited and get my hopes up before. I'm already so low on energy that making it through each day feels like a struggle...

[Vera W]

See, they worked it out! I am so happy! I will be one week ahead of you! I am still working too but fortunately we have a home office! Do something nice for yourself..

[squirrellypoo]

hurrah! posting from my room at the DMU at King's, finally! I was admitted first this this morning and I'm getting the first Campath and fludarabine doses this afternoon I was supposed to come in yesterday evening but the beds were full so I got an extra evening at home).

Right now everything's a bit overwhelming - trying to unpack and come to grips with all the tests and studies (I'm participating in a study to learn more about diagnosing fungal infections early) and procedures, I'm sure I'll sleep well tonight!

[Neil Cuadra]

Good luck, squirrellypoo.

Will you have family around regularly during the transplant?

Will having an American donor make you part American? ;)

[squirrellypoo]

Hi neil. We only live a short bus ride away from king's so luckily my fiancé and my mom don't have far to travel. Though being Amercian myself, my mom had to fly over for the whole summer but luckily we've got plenty of room on the boat to put her up.

I think this transplant from the amercan (28yo male) donor is an attempt to make me even more American and take back my new and very hard won British passport ! ;)

so far I'm one bag of fludarabine and campath in and neither were too bad (I'm having a mini transplant since my counts are so close to zero naturally!). I had a bad headache, flushed cheeks, and some shortness of breath from the campath but that's it, knock on wood...

[Vera W]

Hang in there Sweetie, hope you remain nausea free!

[squirrellypoo]

Still doing fine!

The Fludarabine has zero affect on me whatsoever. The Campath, though, gave me a nasty allergic response last night - a full body itchy rash (think bumpy mosquito bites all over face, chest, arms, and legs), difficulty breathing, and a raw, swollen throat but they're going to run it twice as slow today to try an minimise that. I had to get oxygen and a nebuliser to get my breathing under control during the worst of it so that was a little scary, but it was over with quickly enough. All in all, I'd rather have this than days filled feeling nauseous, as I'm perfectly fine leading up to the point when the Campath finishes (and the reaction starts).

Otherwise I'm just filling my days with sewing, origami, and other crafts, and watching The Wire and going through old films on my Tivo that my fiance hooked up to the in-room flatscreen tv for me...

oh yeah and my name's Melissa if you feel silly calling me squirrellypoo. ;)

[squirrellypoo]

I'm beginning to think I've hit the chemo jackpot - I thought for sure my luck would run out and I'd be nauseous on the Busulphan but apart from a dry mouth, it's had no affect on me at all!

Visitors keep telling me they're surprised I look so healthy and normal. Even though my Hb is below 8 and platelets below 10 without the transfusions and my neutrophils are already at 0.12 (impressive, until you consider they were 0.2 when I was admitted!).

Tomorrow my donor has his stem cell harvest, and it's my last day of chemo! Two reasons to celebrate...

[squirrellypoo]

Today was the big day - the stem cells flew in overnight and apparently the lab tests showed they're really good quality cells, so only one bag was needed. My mom and fiance were here with me and brought in apple juice to do a to a toast in lieu of champagne. :)

Yesterday was a Bad Day for me - first I've been nauseous, followed by a headache and fever and vomiting. But today was a new day, and I felt much better today, getting my appetite back with a big portion of baked mac & cheese for dinner (yesterday I couldn't face much food and even threw up the supplement drink)!

Now the waiting begins....

[Neil Cuadra]

Congratulations on the big day. We're watching for your news, Melissa.

Your blood counts must be at that stage where there's nowhere to go but up.

[squirrellypoo]

It's now two weeks since my admittance and I still feel utterly fine. Not even any diarreah or mouth sores or nausea still. My only bad day was the one I described above and the doctors say that was down to an infection in my line.

In fact everyone's marvelling over how good I look - my dr called me her best patient, a cleaning lady had to ask if I even WAS the patient, and I'm happy to still have my hair (knock on wood) and now since I had red last night, my cheeks and lips are even pink! :) if I can just get past the boredom of the next few weeks I think I'll be ok. Though I'm a bit annoyed I put on padding before I came in, because I haven't lost a single pound yet and everyone said I'd lose like 20kg...

[Ruth Cuadra]

Keep up the good work, Melissa. Boredom may be an annoyance, but it is certainly better than several alternatives at this point in the transplant process!

I sympathize with the whole weight-loss thing. I hoped to lose 20 pounds and gained more than 30 instead. Weight control comes later. For now it's all about that graft.

Regards,
Ruth

[squirrellypoo]

Thanks for the sympathy, Ruth. I haven't got that much to lose to go back to my normal weight, really, and once I can start running and lifting again it'll come off of it's own accord, I'm sure.

Great news! The doctor brought me the fantastic news this morning that my neutrophils went up (for the first time ever!) to 0.7 today, which is the highest they’ve been since about February and the first sign that my donor stem cells are beginning to graft and do their job!! And it’s only Day 11! :D

[Ruth Cuadra]

Fantastic! GO CELLS!

Best,
Ruth

[squirrellypoo]

Good news! I'm typing this from HOME!! yes, I've been discharged, exactly 3 weeks to the day since admission, which just blows my mind! I've got to report in to Outpatients there twice a week, and I've got a dizzying array of medicines to take, but I'm home.

My trend view printout of my CBC is in front of me, and it's really cool...

On 15 July 09:
WBC: 0.03
Hb: 9.5 (transfusions)
Plt: 62 (transfusions)
Neutrophils: 0.02

And then yesterday, 20 July 09, with the help of GCSF:
WBC: 5.36!
Hb: 10.1 (went up on its own!)
Plt: 81 (went up on its own!)
Neutrophils: 4.61!!!

Bad news...
My hair started falling out today. Really disspiriting, since I'd gone past the point where people usually start to lose their hair (2 weeks past start of chemo), so I thought maybe I'd gotten really lucky indeed. But I guess not. :(

[Hawaii Bill]

That's fantastic news!!!

I dare to say that you'll take the blood counts over the hair! At least for now!!!

Best wishes and aloha!

[Ruth Cuadra]

Wow! We need to patent whatever it is they've done for you and for Vera. Your counts are amazing. :D The hair thing is always unpredictable. Mine didn't start falling out until about the third week because it's so indestructible. I hadn't even lost it all when it started to grow back.

Regards,
Ruth

[squirrellypoo]

Well, my neutrophils and WBC fell to around 2 (as expected now I'm off the GCSF), but more spectacular is that my platelets skyrocketed to 138 on Thursday!!! I've never had a CBC with them higher than my bowling score, hahah! I mean, this is just jaw dropping, they haven't been above 50 since my diagnosis in October...

And the last of my hair is gone now, so it took less than a week to go from a very thick head of hair to patchy enough that it looked so horrible that I just had my fiance take it all off with the trimmer. He said Sinead O'Conner, but I'm pretty sure hers was never this patchy! We did discover that I've had freckles under my hair this whole time, though.

We ordered 6 rather nice and fun wigs off a Hong Kong-based eBay shop that had a much better selection than most, with more youthful cuts and colours and better quality than the other wig shops we'd seen. So I'm getting some "non-stare" colours - auburn, blonde, and black, and some fun colours, too - red, pink, and royal blue. :)

But until they arrive, I'm wearing the stretchy teeshirt caps I sewed up and matching them to my (also sewn by me) outfits. :)

[launch]

Melissa,
I'm so happy to hear how well your doing and you have such a positive & fun attitude! Will continue to keep you in my prayers. You know, you had mentioned wigs. A friend of mine who battled breast cancer purchased a wig before she lost her hair, and went to the hair dresser who normally cuts her hair... and had her cut the wig the same. During treatments, I hadn't seen my friend in a month and she had the wig on, but, I didn't even know it! Amazing how natural it looked! Especially having it cut the same way.

But, the "Colorful" wigs sound like a "hoot".... enjoy your recovery! You and Vera give people so much hope!

Hugs, Cindy

[squirrellypoo]

Launch, your friend had way more foresight than me!! Though I think it's going to be kinda fun to match my hair to my outfits every day! ;)

I had another outpatient appointment yesterday. My Hb fell 0.1 point and my WBC and neutrophils fell slightly again to the 1.5-2.0 range of things, but the real star were my platelets, which jumped up AGAIN to the dizzying heights of 173!!! That's in the "normal" range, woohoo!! I've never seen them so high, and the nurses are thrilled.

But with all that good news, I had a real downer yesterday, too, talking to a guy in the outpatient waiting area who had his BMT one week before mine, and also had a really easy time of things inside and got released after three weeks. But he's taking public transport and going into crowds without masks, eating whatever he wants and not doing his mouthcare regime, being best man at a wedding next week(!!) and saying he'd do anything to not go back into hospital because he hated the food so much. Oh, and he wants to go back to work ASAP. He basically just had the attitude of "oh I feel great I must be invincible". Hearing this so soon after Rob's sister's words of warning, I had to tell him how reckless he was being, but he just shrugged me off. I really, really hope he continues to do well, but the odds are not in his favour, and the whole conversation just left me feeling so sad that he's gone through so much to just throw it all away now... Especially since he mentioned he has little kids (he seemed to be about my age, late 20s/early 30s). What a waste.

[launch]

Melissa,

At least you took the time to discuss your concern with the guy who is taking dangerous "Risks" after a BMT. Perhaps at the time it seemed he just shrugged you off... but, maybe... just maybe... when he's sitting alone at his home later... he'll think back and remember your words of "concern"... and take heed.

Good for you for taking time to talk with him and explain how reckless he was being... In the end... your words may be what saves him...

God Bless you,
Cindy

[JEZ]

Launch,

I really believe that there are many times we act or say something and never know the impact it has on someone else.... thank you for reminding us of that. Melissa, I think that your comments may well have made a real difference... you may never even know it but Rob's experience may change things through us all if we have the empathy and concern and show it to others going thru this like you just did.

JEZ

[squirrellypoo]

I had my first post-discharge clinic appointment today (I didn't see Mr Dangerous in the waiting room, either, despite his saying he comes in Mondays and Wednesdays for bloods). The doctors are all really pleased with my progress and bloods, but want to see the results of my BMB tomorrow before they get too optimistic.

I'm getting sedation for the first time tomorrow for the biopsy as they seem to be getting worse and worse for me - the last one, the Doctor got me so upset beforehand by pushing my appointment up several hours and saying she couldn't wait for my fiance to jump in a cab and be there with me to hold my hand that I ended up sobbing through the entire thing. I find them unspeakably horrible, excruciatingly painful, and extremely drawn out, so I'll try anything to try and deaden the horribleness even a tiny bit.

So I'll be back in clinic in two weeks for the results, but until then, the Dr gave me prescription refills for the next two months, and I was shocked at the size of it all! Three enormous bags full! In the UK, if you're not exempt (old age pensioners, on benefits, pregnant, a child, etc) you pay £7.20 per prescription, no matter how long the doseage. So my bill was a WHOPPING £72. Aye yae yae. So I'm really glad the chemist told me about the NHS prepay scheme, where you can pay £104 for an entire year's worth of prescriptions and be done with it. So I did that today, and I'll get reimbursed the £72 when it arrives.

It does steam me up, though, that even though I've got "pre-lukaemia" I've still got to pay for all my prescriptions, when cancer patients get all theirs for free. So if they'd just have waited long enough for mine to turn into AML, I'd not only get free prescriptions, but have access to personal nurses, masseurs, benefit advisors, support groups, and free money to help out with the costs of not being able to work. As it is, I (and others in the same boat) get nothing. I think it's that there aren't enough MDS cases and we don't shout loud enough to be classified under the cancers, but it still winds me up, especially when everyone assumes every baldy out there has got cancer!

Sorry, rant over. I should probably not post when I'm so uptight and anxious over my BMB in the morning... :(

[JEZ]

I had my first post-discharge clinic appointment today (I didn't see Mr Dangerous in the waiting room, either, despite his saying he comes in Mondays and Wednesdays for bloods). The doctors are all really pleased with my progress and bloods, but want to see the results of my BMB tomorrow before they get too optimistic.

I'm getting sedation for the first time tomorrow for the biopsy as they seem to be getting worse and worse for me - the last one, the Doctor got me so upset beforehand by pushing my appointment up several hours and saying she couldn't wait for my fiance to jump in a cab and be there with me to hold my hand that I ended up sobbing through the entire thing. I find them unspeakably horrible, excruciatingly painful, and extremely drawn out, so I'll try anything to try and deaden the horribleness even a tiny bit.

So I'll be back in clinic in two weeks for the results, but until then, the Dr gave me prescription refills for the next two months, and I was shocked at the size of it all! Three enormous bags full! In the UK, if you're not exempt (old age pensioners, on benefits, pregnant, a child, etc) you pay £7.20 per prescription, no matter how long the doseage. So my bill was a WHOPPING £72. Aye yae yae. So I'm really glad the chemist told me about the NHS prepay scheme, where you can pay £104 for an entire year's worth of prescriptions and be done with it. So I did that today, and I'll get reimbursed the £72 when it arrives.

It does steam me up, though, that even though I've got "pre-lukaemia" I've still got to pay for all my prescriptions, when cancer patients get all theirs for free. So if they'd just have waited long enough for mine to turn into AML, I'd not only get free prescriptions, but have access to personal nurses, masseurs, benefit advisors, support groups, and free money to help out with the costs of not being able to work. As it is, I (and others in the same boat) get nothing. I think it's that there aren't enough MDS cases and we don't shout loud enough to be classified under the cancers, but it still winds me up, especially when everyone assumes every baldy out there has got cancer!

Sorry, rant over. I should probably not post when I'm so uptight and anxious over my BMB in the morning... :(

I am so sorry you have to go through that BMB and for all the painful things you endure because of this illness. I will be thinking of you tomorrow... that you would have an unusually easy time of it and experience peace.

JEZ

[squirrellypoo]

Just an update to say that my counts this morning all went up, though only a little over last week's. Still, they're all my own - I haven't had a single transfusion since I was discharged over 3 weeks ago (as opposed to having 2 red & 2 platelets each week pre-transplant)!

Today they were:
WBC: 1.95
Hb: 9.7
Plt: 177
Neut: 1.59

And, on comparison, having the sedative for the BMB really didn't make much difference, except that there were so many nurses in the little room that my fiance wasn't allowed in :( and I slept at the outpatients for 2 hours after it was over. They said the sedative was supposed to give me amnesia for the procedure itself, but I still remember everything. I'm going to have to decide soon whether it was worth it for my Day 56 BMB... :/

[Beth I]

Hi,

I've had the same experience with BMBs and now have conscious sedation rather than a sedative. I had to put up a big stink, and it took a few times to get it right, but it makes a world of difference - you're actually out, for all intents and purposes.

I wish you much luck with that and with your continued excellent progress!

Beth

[carolyn]

Hi Melissa,
How are you feeling? I am so happy that everything has gone well for you so far :) Really hope the results from the BMB are good. I have been reffered by my haemotologist at Guy's to see Prof Marsh at Kings. I am really pleased to be seeing her as i've actually never been seen by an AA specialist. I was told they'd probably want to do a BMB on me at King's, I hope i'll have some more answers soon!

Take care,
Carlyn

[squirrellypoo]

I was just discharged this afternoon - I was getting headaches from Tuesday evening that progressively got worse and worse until Friday morning I just couldn't do anything without bending double in pain and clutching my head in both hands. And paracetamol (tylenol) did nothing, and the codeine (60mg 4x a day) they gave me on Thursday did nothing, so they tried morphine in the Day Unit and THAT did nothing so they tried all three together and STILL the headache won out so they admitted me.

The Drs were 90% sure it was all caused by my Cyclosporine (I was on 125mg twice a day) making my blood pressure spike and that caused the headache so they very slightly lowered my Cyclosporine dosage (to 125mg am and 100mg pm), put me on blood pressure meds (Amlodipine), and loaded me with morphine until the blood pressure pills kicked in on Saturday and the headache went away and we tapered off the codeine and paracetamol. Oh, and I got IV antibiotics, too, because that's just what you get when you're post-BMT in lieu of mints on the pillow. Ha!

When the big consultant came round this morning (shame he doesn't do weekends or I'd have been out sooner!!) he was all "what's she on antibiotics for, it was the blood pressure! Stop that!" and I felt smug since that's exactly what I told the nurse two days earlier. ;)

Hi Melissa,
How are you feeling? I am so happy that everything has gone well for you so far :) Really hope the results from the BMB are good.

Ah yeah, I forgot to report there - yeah my Day 28 BMB results were really good - no chimerism whatsoever so it's all donor cells in my marrow and I actually got to see Prof Marsh for my clinic appt (I saw her the very first time then usually see other consultants in the appts, but she oversees everything in the background) and she's super pleased with my progress.

I have been reffered by my haemotologist at Guy's to see Prof Marsh at Kings. I am really pleased to be seeing her as i've actually never been seen by an AA specialist. I was told they'd probably want to do a BMB on me at King's, I hope i'll have some more answers soon!
Hey that's great news! I really like Prof Marsh - she's an academic mostly interested in the research side of things so be prepared to recount your entire life story in extreme detail in that first meeting but she REALLY knows her stuff. Case in point - at my last clinic appt I saw one of the consultants and complained about my overly sensitive hands and feet hurting from just grasping door handles and walking on carpet, and the consultant had never heard of such a thing before. I mentioned it to Prof Marsh and she instantly said "oh that's Cyclosporine - if you can live with it, it's best to keep the dosage as high as you can tolerate". So even if you don't see her every time, rest assured she is still following your progress and playing "puppet master" and guiding your treatment at the team meetings they have all the time.

Oh - and for BMBs at King's, they never say it, but if you want sedation (you're still lucid but have temporary amnesia, though for myself it didn't really work very well thougth others swear by it) you have to ask for it over the phone when you book the appt. They do them in a separate room so you can scream your head off, too. ;)

I'm in the HOP Day Unit every Monday and Thursday morning if that corresponds with your appointment. Just ask the nurses to point me out, I'm pretty sure I'm the only post-BMT Melissa around there. :)

[squirrellypoo]

GUH. I was home for less than 36 hours! Then I got a fever and headache and nausea but the morphine actually worked on the headache this time, thank god and they brought the fever down. But they had to do a lumbar puncture (spinal tap) today to try to determine the cause of the infection. And the LP was a piece of cake compared to the bone marrow biopsies I've had to endure so that wasn't as bad as I'd remembered from the one I had ten years ago.

Anyway I may find out tomorrow what it is and exactly how long I'll be in, but they're thinking maybe meningitis or listeria now, neither of which is as bad as they sound as all of those bugs respond well to tons of antibiotics. They didn't find any live bugs in my spinal fluid, they're assuming because I had the preventative antibiotics last weekend (grr) which may make identification really difficult. But I'm hoping the antibiotic course won't be too long this time since it's so concentrated - I had three separate IV AB drips before 9:30 this morning!

I feel much, much better right now, though my back is still a bit sore from the puncture yesterday. But it's bad timing as my mom's flying back to America tomorrow after spending the whole summer with us, so now she's pretty distraught. It's not like I planned it this way!

[Vera W]

Stay strong, One day at a time!!! You are in my thoughts, Vera

[carolyn]

Hi Melissa, how are you feeling now? best wishes for a speedy recovery from the infection. Stay strong!
Carolyn

[squirrellypoo]

So I've officially been in this time for longer than my actual transplant, guh! The results were never completely conclusive, but they're calling it suspected meningitis, so that involved a 15 day course of the strongest antibiotics known to mankind (+ iv aciclovir and a much stronger antifungal, then tons of mineral ivs since the antibiotics were leaching out my magnesium, calcium, phosphates, potassium, etc). So I've been hooked up more this time than during the transplant, too.

But what bothered the drs is that I still continue to have a low grade fever and mild headaches despite being pumped full of the above, so to try to find the source, I had 2 lumbar punctures (spinal taps), a chest xray, a ct scan, an MRI, an echo heart ultrasound, and, lucky me, my day 56 BMB during all this, too. Bleurgh.

But they found absolutely nothing wrong with me and the antibiotic course has finished so they're letting me go home today or tomorrow since I'm local and they can't do much about the fever and headaches whether I'm here or there! So I'm fine with that!! I'm getting really sick of being in here and just want my own bed and my own food and to pet my cat. :)

[Birgitta-A]

Hi squirrellypoo,
Good that you have managed to overcome the complications in connection with the SCT!

Wonderful that you can come home to your own bed, food and cat. I have two blue persian cats (mother and daughter) that I love and who love me but since I had neutropenic fever Sept 2007 I have a mask when I groom them and mask + gloves when I clean their litter box. I try to avoid all kinds of infections though I take Neupogen 2 injections/week for low white blood cells and the counts are normal with that treatment.
Kind regards
Birgitta-A

[squirrellypoo]

Good news - they let me go last night! The big consultant said they're still not sure precisely what I had (meningitis is their best guess), but they are certain from the 2nd LP that whatever it was, it's all gone now. I'm just so happy to be back and even doing little things like making my own meals. I was just getting weaker and weaker in there having everything done for me...

Oh, and Brigitta, I'm really lucky in that technically the cat is my fiance's, so it was part of the deal that I never have to deal with the litter or hairballs or anything, even before I got sick. So of course, the cat takes a shining to me, who only ever just rubs his belly and scratches his chin, heehee I make sure I'm in a different room with the door shut whenever the litter tray is being cleaned - I don't want anything airborne drifting my way!

[Beryl]

Hi,
I've just been reading your posts. You sounds good. I hope things continue to improve for you!
Take care,
Beryl

[squirrellypoo]

Thanks for the encouragement, Beryl!

Shortly after I wrote my last post on Friday, the registrar rang me at 1pm Friday to say that in Thursday's chest/abdomen CT scan, there were some shadows on my liver showing a possible infection and that I needed to come in for a review and likely admission. Well, having been home for half a day, I hung up the phone and just sobbed, then had to repack all my hospital bags again, and by the time my fiance came home from work to drive me in, I was strung so tight you could've played me like a violin. Then we spent two hours waiting for the registrar to get out of a meeting, which I spent getting even more and more worked up while I constructed every argument in my head for why readmission was completely unnecessary. Luckily, the first words out of her mouth when she came to me were "We're not going to admit you." Apparently her meeting was with Prof Mufti and he overruled her, and I'm going to KISS that man next time I see him! And he essentially had the same arguments against admission that I had...

So I'm getting a second liver ultrasound tomorrow morning (they gave me one about 3.5 weeks ago after some abnormal liver blood results but found nothing amiss), and they've referred me to a liver specialist, but I don't think they're going to find anything - I haven't had a fever or a headache since I left hospital, which makes me think that either the superpowered antibiotics/antiviral/antifungal I'm on took care of it, or it was stress related from being stuck in hospital for that long.

But it's not all bad news, take a look at my blood counts from this morning, OMG!!

WBC - 6.12
Hb - 9.8
Platelets - 245
Neutrophils - 4.47

The Hb is still refusing to budge, but holy cow, the others are the highest I've ever seen them, and that's without any growth factors or magnifiers or anything!!

[Ruth Cuadra]

Those counts are amazing! I didn't have anything close to that for years after my transplant much less at Day 68. Here's hoping the liver issues are gone. Keep up the good work.

Regards,
Ruth

[Beryl]

Hi,
Have you been doing anything to address the stress? I'm meditating but the biggest help is doing EMDR. It was used for vets for post traumatic stress disorder. There's nothing in my experince as stressful as the BMT.
Good luck with the liver. Are you eating well?
Take care,
beryl

[squirrellypoo]

The big consultant just told me a few minutes ago that they're going to start tapering me off the cyclosporin, hooray!!! It's about the only good news I have right now, being readmitted and looking at a possible 6-wks inside for liver infection. And the registrar just told me I grew a culture in my hickman line so now they might have to remove it, and my possibly weekend release has just evaporated into more antibiotics, and a MR-guided liver biopsy on Monday.

Saturday was supposed to be my wedding day. We had to postpone it a year a few months ago, but we still wanted to celebrate it somehow amd now that's ruined.

So in the past month, I've been home for precisely 5.5 days. I've refused to eat the same food choices over and over and over again this time around - everything is mushy and bland and formulated for geriatrics and for a foodie, it's pure torture. So my fiancé is an angel and bringing my meals in since my neutrophils are high.

And beryl, stress is a major problem for me because they've taken away from me every mechanism I had for dealing with it. I haven't been able to run for 11 months now, there's no baths anywhere, the bmt left me with zero libido whatsoever which leaves me without release and simultaneously contributes to more stress, and my masseur neighbour can only come round once a month or so. And I'd rather stab myself in the eyes than do yoga or homeopathy or other new age crap, no offence to anyone out there. It's not me in the slightest. About the only coping mechanism left is crying, which is hardly emotionally healthy, but then again, neither is anything else about my inpatient stay.

[jyakker]

Hello!

I've been following your story for a while. And I can sort of relate to you. I am 7 months post-stem cell transplant and I am having a set back as well.

I don't have much to complain about. My recovery from pre-leukemia(AML) has been pretty well. I was an active person with lots of energy before becoming ill, and having to deal with your stress without the usual go-to's like running or sports just causes more stress! Since you don't like yoga, I would recommend even just basic stretching. I practise this almost daily. I find it relaxes my mind while I still do my body some good.

I have been through a bunch of tests this week on my lungs (xray, CT scan, bronchoscopy). I've had some major shortness of breath lately along with some coughing and wheezing. It's lastest too long to be just viral. Most test results have come back negative, so my doctors are going with GVH. I've been put back on anitviral, antifungal, and septra. As well, I get to take antibiotics and prednisone, which I am not happy about b/c some side effects can be nasty. But if it works and I can breathe easy again, so be it. I have to tell myself to keep pressing on. I was hoping to start playing more sports again, but that is now delayed as I get winded just walking to the car! My blood counts are high and great, so that is comforting, knowing my bone marrow is doing its job!

I just wanted to say, hang in there. You've come so far already..

Jody

[Beryl]

Hi,
I understand what you're saying. I've said the same thing for years..decades! These days I find I'll try anything. I've been doing EMDR which has helped alot. It was designed to help post traumatic stressed soldiers and this disease is as traumatic as anything I've seen. It helps me- google it and see if it sounds like it might be helpful. I can't imagine how you're feeling now. I hope you get some relief. You deserve your wedding.
You deserve your health.
Keep fighting tough girl!
Beryl





My accThe big consultant just told me a few minutes ago that they're going to start tapering me off the cyclosporin, hooray!!! It's about the only good news I have right now, being readmitted and looking at a possible 6-wks inside for liver infection. And the registrar just told me I grew a culture in my hickman line so now they might have to remove it, and my possibly weekend release has just evaporated into more antibiotics, and a MR-guided liver biopsy on Monday.

Saturday was supposed to be my wedding day. We had to postpone it a year a few months ago, but we still wanted to celebrate it somehow amd now that's ruined.

So in the past month, I've been home for precisely 5.5 days. I've refused to eat the same food choices over and over and over again this time around - everything is mushy and bland and formulated for geriatrics and for a foodie, it's pure torture. So my fiancé is an angel and bringing my meals in since my neutrophils are high.

And beryl, stress is a major problem for me because they've taken away from me every mechanism I had for dealing with it. I haven't been able to run for 11 months now, there's no baths anywhere, the bmt left me with zero libido whatsoever which leaves me without release and simultaneously contributes to more stress, and my masseur neighbour can only come round once a month or so. And I'd rather stab myself in the eyes than do yoga or homeopathy or other new age crap, no offence to anyone out there. It's not me in the slightest. About the only coping mechanism left is crying, which is hardly emotionally healthy, but then again, neither is anything else about my inpatient stay.

[Beryl]

Hi Again,
I keep hearing from my therapist and accupunturist that crying IS good for you. The accupunturist says it helps move the "Chi" around your body (chi=life force) and my therapist says crying helps discharge pent up energy. If we keep it pent up in the body it leads to more stress. It's natural to cry.
Are you able to walk or do any kind of exercise?

Take care,
Beryl

[Vera W]

Melissa, I think of you often! Let us know how you are

[Beryl]

Hi Melissa,
How's it going? Check in with your buds if you can.
Take care,
Beryl

[Beryl]

Melissa, I think of you often! Let us know how you are

Hi,
I'm glad to hear you're doing well. I'm ok- still on the countdown and scared.
How ae you?
Take care,
Beryl

[Vera W]

Do you have a donor? Be strong, resolve yourself to making it through.Don't get scared by other peoples experiences it will make you crazy. Make it your own experience and make it work for you!

[squirrellypoo]

Sorry for the silence, but I had so much to update on that it was way too much to tap out of the iPhone and required a bigger chunk of time and effort to get everything up to date.

So I've been home for 2 weeks now (after 5!!! weeks in hospital with cyclosporin-blood pressure headaches, then meningitis, then Hickman infection/liver lesion stuff).

They're still investigating the liver stuff, but it may or may not be related to the Epstein-Barr Virus reactivating in me (EBV- the mouth herpes one that like 95% of the population has latent in them at all times). They've already done two liver ultrasounds, two liver CT scans (one with added biopsy), but they want to do one or two endoscopies (camera down the throat, gag) with another ultrasound-guided biopsy and possibly another CT scan as well to find out more about what the liver lesions are and if they're EBV-related or something more sinister. oh yay.

So in the meantime the only prophylactic antifungal that doesn't mess with liver function exists solely as an IV, so I have to go into HOP every morning, M-F, to get that drip over one hour, then once a week for 4 weeks (2 down, 2 to go) I have to go upstairs to the chemo suite to get a longer drip of this pretty cool (to a genetics major, anyway) human/mouse hybrid antibody to beat the EBV back into submission, Rituximab. Because of the mouse parts, apparently EVERYONE reacts to it pretty violently, but I got really lucky and haven't had any problems with it yet! And I react to pretty much everything going, hahah

Oh, and on top of all that, I got an infection in my beloved Hickman line so they had to remove it. The removals are just done in a regular bed and normally take 10min with a sterile scalpel and one stitch. A very experienced doctor did mine (she's the one who did both my lumbar punctures as well as two of my BMBs), and she said mine was the longest she's ever done (90 full minutes), I bled more than anyone she's ever seen (even though my platelets are well within the normal range these days - 300s rather than 10 I had in June. no explanation why), and I used three times more local anaesthetic than the most she'd seen previously. But something was wrong with how I synthesized the anaesthetic or something, because it only worked for about 2min each time and then I could feel every single scalpel swipe. Reinject. Scalpel. Repeat. For 90 minutes. I had to have 3 stitches sewn in without any anaesthetic or painkiller whatsoever. If I'm telling the short version of the story to people I tell them I no longer fear childbirth, but the long version is that I had to speak to the haemato-oncology counsellor to stop having flashbacks and terror keeping me awake at night. I think that helped a lot, actually. (I'm due to get a line put in my arm soon because I just can't face another one in my chest after that and the doctors actually aren't fighting me on it). For a while there I was a bit mentally and emotionally broken.

So other than all the clinical doom and gloom, I actually feel fantastic. I've got tons of energy (well, relatively speaking from the past year anyway) from cooking my own food again, even though my Hb has crashed down to 8.8 from the 3 separate drugs I'm temporarily on that are known to inhibit blood production (Septrin, Linezoid, and the aforementioned Rituximab), my hair is starting to fuzzily grow back but I'm having fun with my 6 brightly coloured Japanese cosplay wigs, and I got a Runkeeper app for my iPhone that tracks my walking via GPS and makes pretty graphs so I try to walk a little further each day to build up some stamina. Though it usually ends up with me crashing to a nap when I get home... And our cat is excellent help at rehabilitation, too. :)

And I'm SO happy to be off the cyclosporin. OMG I feel so much better for it! They cut me off cold turkey about two weeks ago (apparently a perk of having a mini transplant is that the cyclo is stopped ~2 months if there's no GvH), and my blood pressure is back to normal, my face & body hair has stopped growing like a gorilla, my face is no longer so greasy that water beads on my hands whenever I touched it, my body temperature is no longer so hot I was uncomfortable to cuddle, and my hands and feet are no longer super sensitive and burning all the time. And all of the above were indeed attributed to cyclosporin by either the Prof or my post-transplant specialist nurse. Horrible stuff!

[Gloria J]

Well, you seem to have been through the wringer and back!! How exciting for you, though, that you are home (somewhat) and feeling better, and best of all, off the Cyclo!

I'm still on it, so I can relate to all of the side effects you mentioned - been there, felt that. I've also had Rituxan, once a week for four weeks. The first one I reacted to slightly, they just gave me more Benadryl and Tylenol. The last three I slept through. I did it to raise my platelets, but it didn't work for me.

It is amazing to read all that you've been through, and yet, you soldier on... Bravo to you!! Your extremely positive attitude (and your purring cat in your lap) will see you through. Wishing you a continued, speedy recovery!

[Beryl]

Do you have a donor? Be strong, resolve yourself to making it through.Don't get scared by other peoples experiences it will make you crazy. Make it your own experience and make it work for you!

Hi Vera,
Thanks for the good advice. This is tough and i haven't even gotten to the hard part yet. You are a good model for me!
Take care,
Beryl

[squirrellypoo]

Today is my Day 100!!! In some ways the time has really flown, and in others, I swear it felt like way, way longer. My fiance and I wanted to celebrate by eating in a restaurant (first time since transplant!), but since everything would be too busy on a Friday night, we're going round the corner to Brown's along the river for lunch instead. If I remember correctly, they do some mean mocktails, too. :p

I'm still going in every morning for the Casperfungin drip, and it looks like that's probably going to continue until at least the 28th, when I have my Liver CT scan, though fingers crossed that'll show that the lesions have reduced in size and I can go back to oral antifungals and get my life back a bit... But I've finished the course of Rituximab for the EBV reactivation, and my PICC line insertion went well on Wednesday. They got it in on the second try, and I had a ton of site bleeding on Wednesday night (even though my platelets were about 150), but it's stopped now so they're not too concerned. It's just nice not to have to get cannulas all the time and have my hands free again!

Also, it appears that my crashing counts were mostly due to the huge daily Septrin doses I was taking for my Hickman line infection - once those stopped, my counts have started to climb back up again, even though the Rituximab is still in my system. Hopefully once that's cleared they'll resume their previously high levels I was enjoying before all this inpatient mess in August and September!!

[Neil Cuadra]

Day 100, climbing counts, and a meal out! You had great reasons to celebrate, Melissa. Congratulations!

[Vera W]

Happy Day 100! Keep trucking!!!!

[Laura]

HAPPY DAY 100!!!!!!!!!!

You can breath a sigh of relief now :)

[Beryl]

Today is my Day 100!!! In some ways the time has really flown, and in others, I swear it felt like way, way longer. My fiance and I wanted to celebrate by eating in a restaurant (first time since transplant!), but since everything would be too busy on a Friday night, we're going round the corner to Brown's along the river for lunch instead. If I remember correctly, they do some mean mocktails, too. :p

I'm still going in every morning for the Casperfungin drip, and it looks like that's probably going to continue until at least the 28th, when I have my Liver CT scan, though fingers crossed that'll show that the lesions have reduced in size and I can go back to oral antifungals and get my life back a bit... But I've finished the course of Rituximab for the EBV reactivation, and my PICC line insertion went well on Wednesday. They got it in on the second try, and I had a ton of site bleeding on Wednesday night (even though my platelets were about 150), but it's stopped now so they're not too concerned. It's just nice not to have to get cannulas all the time and have my hands free again!

Also, it appears that my crashing counts were mostly due to the huge daily Septrin doses I was taking for my Hickman line infection - once those stopped, my counts have started to climb back up again, even though the Rituximab is still in my system. Hopefully once that's cleared they'll resume their previously high levels I was enjoying before all this inpatient mess in August and September!!

Congratulations!! You are a tough woman!!
Your fan,
Beryl

[squirrellypoo]

Great blood counts from yesterday!!

WBC 3.57
Hb 11.8 :D new all time high! And in the normal range!!
Plt 339
Neut 2.42

I got some hives on Friday afternoon on my chest, neck, lower face and shoulders that have been itching like crazy, though. No one's quite sure what caused them but I'm taking some piriton which is stopping the itching but they're just observing them this week to make sure they don't get any worse!

[Laura]

That is interesting you should say that. One day I just broke out in a hive like rash all over my back, chest, neck, etc. It just came on suddenly with no explanation and by the next morning when I woke up, they were gone. Never found out what caused it either.
I did get iv Benadryl for it, which did not get rid of it...just reduced the redness.
Laura

[squirrellypoo]

Well, after 2 weeks of constant, unrelenting ITCHING of these hives, dermatology finally got the skin biopsy results back and have determined it's GvH. At this point I don't really care what it is, I just want some relief, so I'm happy that they prescribed me some steroid ointment for my chest, neck, and back, and some hydrocortizone ointment for my face and scalp, and then a weird lotion to moisturise everything a couple times a day, too.

I'm happy they've decided to just give me the topical stuff, though, and not put me on any oral steroids as well (I only have the skin problems, no interal stuff), and they say these ointments work really well and should clear things up quickly. On one hand, I'm annoyed all this waited until Day 100 to rear its head, but on the other hand, it's nice to know my new immune system is working even though my blood type is still my original one.

In other news, I had yet another dye-assisted CT scan last night to check on my liver (the technicians up there recognise me now, out of thousands of patients in the hospital, how sad!), so I should hear back tomorrow if the liver lesions have disappeared and if I can finally stop going into HOP every single day - my fingers are crossed SO HARD! But the consultant today said all three of my liver function results have fallen back into the normal range, so I hope that's a good indication.

And finally, my Hb hit a new dizzying high on Monday - 12.0!!! OMG! I've definitely got more energy these days, I haven't needed an afternoon nap in about a fortnight now. ;)

Keep your fingers crossed for my CT results, okay?

[Laura]

squirrellypoo,
So glad to hear they finally found a cause for the skin issues. Those creams works great and usually clear things up really quick! I am hoping that is the case for you.

What a great HGB also! How are the rest of your counts?

Will be thinking of you as you have your CT!

Laura

[squirrellypoo]

Well the CT results came back - the liver lesions are fewer and reduced in size, so that's good but it means I need to carry on with the casperfungin wvwry single day until they're gone. :( I'm going to speak with the nurse specialist on Monday about getting home care to come to me. She mentioned it before but this is getting ridiculous now! They're assuming it's a fungal infection but it could also be EBV related but since I started both the casperfungin and the rituximab at the same time, they can't say for certain which one caused my function tests and lesions to improve. So it's at least another few weeks of the casper, then another CT scan to check the progress.

Oh and laura, here's my counts from today, all great!

WBC 3.43
hb 11.2
plt 401 !!
Neut 2.54

so at least they're something to be happy about. :)

[Laura]

squirrellypoo,
Great counts!!! Those are fabulous.

Glad to hear things are better re the lesions. It is hard to have to get something by iv every day. I would totally see about doing it at home. I used to go in every day for 4 hours of iv Magnesium...they finally set it up at home and have been doing it at home the past 4-5 weeks. I just think about how every day I would be at the hospital for about 6 hours instead of sitting at home. It is very nice!


Laura

[squirrellypoo]

A couple bits of good news to share...

Monday's counts were, for the first time ever, all four in the normal range! I've seen each of them in the normal range individually, but never all at the same time. :) My whites fell a little bit on Thursday's count, but I'm no longer completely obsessed by every little rise and fall. Here's Thursday's (yesterday's) counts anyway:
WBC: 3.80
Hb: 12.2 (another new record high!)
Plt: 415
Neut: 2.55

I finally had the stomach endoscopy on Wednesday that was ordered back when I was an inpatient in September. It was a truly, truly horrible 5 full minutes of continuous dry heaves, retching noises, and eyes streaming with involuntary tears, but the endoscopist said everything looks perfectly healthy and he took some biopsy material just to be sure whatever's in my liver hadn't caused the thickening of the stomach wall that showed up on the CT scan back in September. I would really love to live the rest of my life without ever having to endure another one, but if I have to find a bright side, it's at least that they went down the throat and not up the bum!! :eek:

And the last bit of good news is that my wonderful post-BMT nurse specialist has arranged for home care to start next week! So I'll only have to go into HOP twice a week for blood tests (and the caspofungin IV, since I'm there), and the district nurses will come to me on the other 3 weekdays to give me the IV drip. Apparently they're excited because I live on a boat and it's something fun and different (though maybe they'll reconsider after dragging a pump down the moorings gangways!) and also because they don't often treat younger people so it'll be something different for them in that respect, too.

Oh, and it was fun to run into Carolyn from this forum (and her adorable daughter) at HOP last week, too!

PS: and the steroid cream has really helped the GvH hives. They've now gone dry & flakey, which is much easier to handle, and there's not evidence of GvH in my stomach, either.

[Laura]

YEAH! That is awesome!!!! I am still waiting for those "perfect" counts myself. So glad to hear that things are going well and now you can do things at home too!!

I had my counts taken Thursday and they have dropped just a tiny bit more...it is driving me CRAZY! :)
WBC 2.2, ANC 950, PLT 82, HGB 11 something (can't remember) Today is day +148.

Laura

[squirrellypoo]

Laura, you're still on cyclosporin, aren't you? It might just be a coincidence, but I swear my counts really started to go up once I came off the cyclo (and those antibiotics I was on that were keeping them down). I think as long as you're feeling good, it's not really worth worrying too much over numbers on a day-to-day basis...

How's your magnesium these days? Are you still having to get that regularly?

[Laura]

I took Prograf for transplant and I am off it now. When my counts initially crashed down my doctor tried to wean me off it double the rate what he normally would have. He thought once I came off it my counts would come up. They did somewhat but now they are in a holding pattern.

They just switched me to 4 grams iv Magnesium every other day from every day. We are waiting to see if it will hold at this level or not yet. However, my Potassium is not holding well at all so he really wants to make sure my Magnesium holds at a good level otherwise my Potassium will become worse.

Yeah I try telling myself not to worry about the day to day labs but it is hard :)

Laura

[tserdogan]

Hi,
I have same problems with counts like Laura.Hgb is around 7,0,plt is 70 and wbc is 4,0.
my immunesupresants are daily doses .Sandumin neoral 300 mg,prednol is 24 mg and mmf cellcept 2000 mg(my doctor raise cellcept dose to decrease prednol).i am waiting too how these counts raise think it will be very amazing

[squirrellypoo]

Since I posted last I had yet another CT scan, and got the results through last week - there are still 2 liver lesions remaining, so I have to carry on with the Caspofungin (though today, FINALLY, the home care started so the nurse is coming to me on T/W/F and I only have to go in to the hospital on Mondays and Thursdays since they can't do blood counts from home).

Buuuuuut, there's two new spots on my lungs. So they put in a request for a lung biopsy last week, and actually fit me in yesterday! Holy crap that was fast! Usually they insist you stay overnight the night before and the night after the biopsy, but the surgeon came and looked at me and that I was otherwise healthy and young and let me sleep in my own bed instead! Hurrah! So I did it as a day patient, even though it was way more hardcore than the liver, skin, and even bone marrow biopsies I've had previously.

It's under general anaesthetic (which I've only had once before when I was 15 for foot surgery) and they made two incisions on my right side to jam a camera in and take postage stamp sized sample. I was expecting stitches, but it looks like they might have used surgical glue instead (one's on my back and the other is under my boob so it's kinda hard to see). Anyway, the pain is alot better today - the take home painkillers they gave me work pretty well if I don't move too much, and I can at least breathe today without it hurting (post-op yesterday was AWFUL even with the morphine). And I'm happily keeping food down today - yesterday after being nil by mouth for nearly 21 hours, my stomach having anything I was giving it. I even barfed out the car window on the way home, right next to an entire bus full of people in the next lane! How mortifying!

So I should hopefully know the results of the biopsy next week. They think it's probably fungal, but they're severely limited in what antifungals they can give me since I'm allergic to two (ambizome & intraconozole) and posiconozole isn't strong enough. So they're going to wait and see what Microbiology say, but it may just mean upping my Caspo dose, since this cropped up despite the daily IVs for the past two months.

[carolyn]

Hi Melissa,

I'm sorry to hear about the lung biopsy, that must have been horrible, but you have come SO far already that you are tough enough to handle these minor setbacks! It was good to meet you the other week, and to see you looking so well! Keep up the good work!!!

Carolyn

[Vera W]

I am so sorry that you are going through all this, my heart goes out to you and my thoughts are with you. I know you are a strong person and you are young! Please take care..Big Hugs, Vera P.S. I take V FEND but it is rather expensive

[squirrellypoo]

I knew V Fend sounded familiar! I just checked through my bag o medicines and see that it's the brand name for Voriconozole, which I was on for a while but as it interferes with liver function, they took me off it until this liver crap clears up. Frankly I have zero idea what anything costs as the drs never bring it up and it's all the same to me at the pharmacist's anyway. It's nice to just get the best medicine, not the cheapest, I suppose.

Oh and a small update- after several days of the lung biopsy pain being manageable, I had sharp pains in my back so bad I could barely breathe so we had to rush in to A&E on fri night. We called ahead so a haem dr was waiting for me and we had the best possible outcome - in and out in 2 hrs and the dr said it was fairly normal to get new pains like that, and sent me home with more codeine after a quick chest xray to make sure nothing was horribly wrong. So the codeine's helping a little but I'm still in a bit of pain when I cough, yawn,hiccup, etc or if I sit in the really squishy sofa. Ugh. I thought surgery pains were meant to get better each day, not worse!

[Laura]

Sorry to hear all of your troubles. I hope the lung clears up soon. I was on Voriconazole and it made my liver enzymes jump up, so I took Posaconazole for transplant. Currently I am on nothing for fungal protection.

Laura

[kirsty]

hi there just joined the site i have 2 children with mds just would love a chat with someone who nows what im talking about kirsty:):)

[squirrellypoo]

Hi Kirsty.

There are lots and lots of people here who have MDS! Why don't you post a thread in Tell Your Story to introduce yourself and maybe we can help answer some questins you might have. This isn't the fastest moving forum, so you may have to wait a few days to get replies, so there's no need to post the same thread in multiple forums.

Also, I noticed you're in the UK - what part are you from? Do you know Prof Mufti at Kings College Hospital by any chance? There's also a UK MDS patient forum (http://www.mdspatientsupport.org.uk/) that you might find helpful.

[squirrellypoo]

The only news I got on my lung biopsy today isn't really news at all - nothing has grown yet. So it's not bacterial or TB, and it's probably fungal like they expected, but they still have to wait for something to grow to identify it. I'm hoping I'll know something when I'm back in on Thursday.

On the downside, my WBC and Neutrophils have fallen slightly (2.80 and 1.96, respectively), but that might be related(?) to my EBV levels being really high again. My initial reactivation had levels of 30,000 and they told me that if it goes above 100 or so they give you Rituximab, and that worked really well but now they've climbed back up to 42,000 so apparently they're going to discuss me at the histology meeting this week to se if it's worth giving me another course of Rituximab. Which isn't bad (for me at least) but it's just a PITA since it takes up an entire afternoon for four weeks straight, and between this, the continuing daily Caspofungin IVs and whatever they're going to give me for the lung critter, going back to work and being able to start running again in January are both looking grim. :(

Still, one result today that made me smile - sometime last week my blood type finally switched!! So you're now talking to a card carrying member of the O positive family. :D It only took 5 1/2 months!

[Laura]

I really hope it isn't fungal infection but if it is at least they caught it early enough. I think your lower counts could be related to that or the drugs you are on. I did Rituxan once and it knocked the socks off of me. Glad you can tolerate it well. I reacted really bad to it. I can't believe it took that long for your blood type to switch but I think it is pretty cool. I won't switch blood types as we were both A+.

Laura

[squirrellypoo]

Oh yeah last time I was on Rituximab my counts crashed so bad I had to have a GSCF injection (though I was also on daily Septrin at the time, too). I've been off that for a few months though so my counts have generally been good. And with all the bad news surrounding counts around here, any change is making me a bit jumpy... :(

[Laura]

Totally understandable! I hope your counts don't crash down.

I had an allergic reaction the first time...hives, closing of throat, etc..

My counts also crashed and I bled out in the middle of the night in a hotel from my IJ line, scary. This was when I was at the NIH.

Laura

[tserdogan]

Hi all,

It is my turn now,my blood type has not changed yet,we are waiting it change to 0+ to A+.İf it is,may be i dont get transfused red blood again.

All of us are waiting good news from you,Laura and me also at two weeks.;)

[squirrellypoo]

Tserdogan, I think your transplant was a few weeks after mine if I recall, so it should hopefully change soon, I'd guess. Though the Drs say they can never predict exactly when it'll happen!

News yesterday - they've decided the lung biopsy hasn't grown anything and isn't going to so they've labelled it as "inconclusive". Two weeks of agonising pain, three giant scars, and a trip to A&E for nothing. Absolutely nothing.

And I got my next CT scan date - 12 Jan. So my daily IVs have to continue until at least a week after that when the results come back. If the lesions are gone, I can stop and go back to work and remove the PICC line in my arm and start running again. If there's even one left, I've got to carry on for at least another month til another CT scan. Guess which result I'm hoping for? Next week I get to try to convince the Drs to leave me alone on Christmas Day. Fun.

[Beryl]

Hi Squirrellypoo,
I'm thinking of you and sending you the healhealheal vibe!
Take care,
Beryl

[Laura]

That does stink you went through all that for "nothing" but at least you can breath a sigh of relief that it isn't fungal. That can get nasty fast.

Good luck on the next CT.

Have a Merry Christmas.

Laura

[squirrellypoo]

Oh, Laura they're pretty sure the liver infection is fungal and reckon the lung spots were, too, but that the spots might be inflammatory tissue from an infection that's been fought off already (so there'd be no living fungus left to grow when they put it in a dish). They're waiting to see what the next CT scan says, but the consultant said he spoke to the fungal people and if the CT scan shows tiny spots then they'll switch me off the IVs onto something oral even if it's not entirely gone. So unless there are new spots or they've gotten bigger, I should hopefully be able to start back at work for the end of January. Fingers tightly crossed!

One bit of good news from my appt on the 23rd is that they're pretty sure the 47,000 EBV level result was an aberration or mistake at the lab, because I've had two low counts (300-500ish) since then and while EBV likes to jump around, it doesn't jump *quite* that much! So they're retesting that sample, but the consultant said I won't need another course of Rituximab. Phew!! Oh and he also said my EBV levels moving around are proof that my new immune system is starting to do its job and he's confident I'll be able to fight off infections better now, too (one of the reasons they're being a bit more lax with the liver infection, as they think I can mop up the rest on my own with some help from a lesser antifungal). Here's hoping it finds something to occupy itself that isn't attacking my poor skin!!

Oh, and Serkan, the consultant told me that the average for blood type switching is about 4 months, but he said they see people switch at 6-9 months, too, and it's not really known why there's such a range. But he also said that they only test the lymphocytes for blood type, and they're the last to come back to normal, so it could be that your reds or platelets are the donor type and it just wouldn't show up since they're testing other cells.

[tserdogan]

Hi Melissa,
Thinking to turn back to work at the end of january is great.Part time or full time working?
I am also thinking to turn back part time my job at the middle of february (insallah)
you know my counts low but working may be increase with morale.

[tserdogan]

 also thank you for asking your consultant to my blood changing.i think my problem is still about my bmb.it is only work at %5.if it increases to near normal,my blood will change to donor blood.

[squirrellypoo]

Today is my 6 month anniversary of my bone marrow transplant! woo yay! ;D

My PICC line decided to celebrate by getting me a really nasty infection! boo hiss! >:(

So after four bouts of fever (38.8C today!!), violent rigors, and chills in the past week, they admitted me again today after they grew some horrible nasty culture from inside the line itself. But the up side is that my new immune system has been awesome at getting rid of it in a few hours, so I should hopefully only be in for the weekend. I'm typing this in my room now waiting for them to rip the line out....

Not really how I wanted to celebrate today.

(oh and my blood counts yesterday were all in the normal range. And reporting me as B+ again, ha! So clearly I've still got some old lymphocytes floating around still.)

[Laura]

Happy 6 month anniversary!!! Can you believe it has been 6 months already? I can't!! Just think we are half way to a year. Sorry to hear about the infection. That stinks that had to happen. I hope you get out of there fast and you are fast on your way to recovery.

Laura

[squirrellypoo]

I know!! I think what really hit home was when I had my 6 month BMB on Monday and my post-transplant nurse said, "well, just think, you won't have to have another until July!" and the thought of my next one being in the height of summer just blows my mind! (I don't know if it's made the news in the States, but the UK is in the midst of the harshest winter in like 20 years. It's a big even f we get snow once a winter, and we've had something like two weeks of consecutive snow and icy weather - in fact, the only reason I got a bed so easily today is that a bunch of patients for scheduled treatments couldn't make it in from the surrounding counties, bwahahah).

Any news on your end? Update your thread! :) And where's Vera, too? I think of us four summer transplantees (plus my Welsh friend) as a little survivor group...

[Laura]

No, I haven't heard about your weather. That is crazy. It has been very, very cold where I live. It hasn't been above zero all year.

That is funny because I think of us as our little survivor group too :) It is nice to go through the same thing together and hear about each others ups and downs.

Not too much is happening here. My labs were WBC 4, PLT 80-90s, and HGB 10-11 range. However, I got labs this past week and WBC 3, plts down to 70s, HGB still 10-11 range. Dr seems worried that my labs will keep decreasing. He told me if that happens he will check the chimerism again. He told me he REALLY does not want to give me more donor cells unless absolutely necessary. He told me if it was him he would rather have the transplant fail and redo it, then get more cells. I guess he has seen a lot of people get more cells and get such severe GVHD that it just ruins their life. I am hoping that it is a flux and things will be fine when I get them checked again. I also got to drop how much Magnesium and Potassium I am taking, about time too. Hopefully the levels remain good.

Otherwise I just am hanging out and can't wait until I can return to work.

I wonder where Vera is too??? YOU OUT THERE VERA? :)

Laura