Countdown to BMT!

[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 acc

Originally Posted by 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.

[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]

Originally Posted by Vera W

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]

Originally Posted by 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!

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.

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]

Originally Posted by 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.

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 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!!

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