Countdown to BMT!

[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 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. 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