Countdown to BMT!

[squirrellypoo]

I posted my story a few months ago 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, Busulfan, and a very new one, Campath, 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).

Originally Posted by Vera W

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