Transplant

[leeslay]

So while I was at the hospital last month getting the horse ATG, a hemotologist came in and talked to me, he read my records and then he sent a Transplant Dr. to come and talk to me.

Basically he said that the ATG was for nothing because of the PNH and the chromosome issues I have. I went back up to Denver last week and he confirmed this again. So I layed in a hospital bed for a week going through ATG for nothing. Talk about frustrating. So I have since changed my Dr.'s and now we are working on finding a match for the bone marrow transplant. Which my first Dr should have just done in the first place!!!!

I'm sure anyone who has had a bmt/sct has gone through many emotions. Some days I'm ok the next I just cry all day. Its months away and yet i feel that I should be getting things ready!! What those things are I have no idea though.

I will hopefully meet with my transplant coordinator next week to start answering some on my questions.

We got three other opinions and by shear luck, this hemotologist who just happened to look at my file finds this.

Frustrated beyond belief doesn't really explain how I am feeling right now.

[Marlene]

Lee,

I can't remember what your clone size was for the PNH but I don't feel that the ATG was for nothing. It's true that ATG will not address the PHN but there are other approaches to treating it other than bone marrow transplant.

So it is true that a BMT will address both the AA and PNH in that it's curative, but there are many docs who don't treat PHN unless the close size is very high. BMTs come with their own set of issues and complications. That's why if the ATG can help the AA, then PNH may be managed with a new drug that came out a few years ago.

There's no one approach to the treatment of AA/PNH and you need to explore all options. Docs all have opinions and biases. You need to hear the various options and decide which is the right one for you.

http://bloodjournal.hematologylibrar...09-03-195966v1

I know how frustrating and overwhelming all of this is. I would consult with NIH and Dr. Brodsky at Johns Hopkins. During this timeframe, you can do a search for match for BMT. Lay out all the options and understand the long-term implications.

[Vera W]

Leeslay, there really is a wealth of information on the internet, Go to the National Bone Marrow Website, Try to educate yourself in all areas of this, your research should help you ask the right questions. Be strong, Vera

[Hopeful]

Hi Lee,

I agree with Marlene in that if your AA/MDS is behaving like AA, then the ATG was not futile. How are your counts now? Are your platelets still holding? Remember that ATG takes a few months to work. There is no harm in starting a BMT search during this time.

It is true ATG won't cure AA/MDS and will do nothing for PNH. However, if your AA/MDS goes into remission then you have bought some time (possibly years or even decades). For AA/MDS, I was under the impression that the reasons to move to a transplant would be because of increasing blasts, increasing fibrosis, or no response to immune suppressant or other MDS drugs. Otherwise, you really need to weigh the risks.

PNH can be controlled with other drugs like Solaris. Are you on this now? What is your clone size? Do you know if any of your doctors are specialists in PNH? Check out this great PNH website for more information on physicians and treatments:
http://www.pnhdisease.org/modules.ph...viewlink&cid=1

Try not to panic. As Marlene said, think about all your options. I know the waiting-game after ATG is brutal. I hope your counts are holding or improving and that you are responding to the ATG!

[leeslay]

I am going to go in within the week to have another bone marrow biopsy, the last one was done in November. My new Dr just told me that from the slides he looked at he didn't see any signs of the MDS. So why did my last Dr.?? SO the new biopsy is the clarify the diagnosis.

My counts have not gone up - hgb 8 and falling, platelets 23 and falling and wbc 2.1. I know it does take a couple of months to see results, and its only been like 1 1/2 so I am trying to be patient.

I know my chromosomes are funky and that I have a 3rd clone of my chromosome 12 that is deformed. However I don't know what this means yet. I am trying to research and educate myself, however some days are better than others in that department.

So hopefully I will find out some more info within the last week.

Thanks for all your thoughts and suggestions!!

[leeslay]

So now my new Dr. says - I don't have MDS or AA, but that I have Lymphoma. How in the world can that be??? I just found this out on Friday over the phone but I am going to see him tomorrow to see what happened. Anyone ever heard of this happening?

[squirrellypoo]

Oh geez, I'm sorry to hear that, Lee! What a shock!

I wonder if it's worth having your BMB samples sent to yet another haematologist for a second (err, fifth?) opinion? It sounds like you've had every diagnosis under the sun and no consensus. Is there an MDS centre of excellence near you?

[Marlene]

Your head must be spinning from all this!!!

I think it's a good suggestion to get another set of eye on this also. Can you get to NIH or Johns Hopkins? I don't know if I could trust any one doctor's opinion at this point. You need some collaboration with the experts on this to get a definitive diagnosis.

Pretty much all immuno-supressant meds like ATG, Cyclo, Cytoxan, etc can cause secondary clonal disease like leukemia or lymphoma. These usually don't show up right away though.

Keep pushing for clarity because you want to make sure you get the proper treatment.

[leeslay]

So last time I posted my Dr. was thinking Lymphoma. I had a PET scan and that came back clear. So he told me that my counts should start going up and things should be improving. That was the end of March. I had to go back in yesterday because my counts - all of them - have been dropping pretty fast and I've had to get two transfusions, I've lost 20lbs, my hair started falling out, blood in my urine, etc. So he tells me yesterday that the PNH is getting worse and that now - again - I have to get a BMT. He is going to start the search for a match asap and that its the only thing that can cure this. So back to square one I guess. How frustrating!!!

[Neil Cuadra]

Lee,

"Frustrating" must be putting it lightly. With your increasing symptoms of PNH your doctor's advice sounds right on the mark. Please tell us as soon as you get the results of the donor search.

In a way, your ever-changing diagnosis could become moot. When you are cured by a transplant it almost doesn't matter what disease you had.

[leeslay]

Its been awhile since I've been on. I found out in July that yes it is PNH, AA and my chromosome 12 has a 3rd string. My Dr says that this is very rare. He wanted to put me on some more "experimental" medication, but after two rounds on the ATG I said no thanks what are my other options. The only one is a BMT. I am scheduled to do this around the end of October. I was ok with it at first - finally a cure!!! Now I am terrified and just want to cry all the time. I keep getting information about the treatment procedures and it scares me. I am trying to be strong and not completely lose it in front of my family. I know I wanted this but now I am having second thoughts. We have to have it done about 75 miles away which means after release from the hospital I will be stuck there for 2-3 months after. I have to have an adult with me 24/7, my husband has to work - he's been laid off for months and we finally got something. One daughter is 18, working and going to college and I will not let her drop out to stay up with me. My other daughter is 12 and is trying to understand whats going on but I can't tell her details because I can't look into her eyes and see her scared. I know that everyone who has a BMT goes through these feelings. They have no PNH support groups where I live to talk to anyone about how i am feeling. I have been just trying to stay really busy so I don't think about it. Then I will talk to my parents and lose it all over again. I just needed to get this out, I felt like I was going to blow up. Thanks for listening.

[m mindas]

Lee
You sound exactly like me! I am going in for my t/p the end of sept 2010--I was initially psyched about it--as you said, "finally a cure!" But then I talked to other ATGers and since they have had success, they want you to have success and can inadvertently scare us out of our t/ps. I was initally dx w/MDS then they said AA w/PNH and had the horse ATG--no change. I now have all three--without any chromosonal changes, so far. I continue to be dependent bi-weekly for platelets (if I'm lucky and they "take"--as I have become allo-immunized) and weekly for rbcs--hemoglobin drops regularly. My doc said, "It doesn't matter what you want to call it, your bone marrow is not working and you need a transplant". I truly believe that I am never going to be any younger or healthier than I am right now and I didn't want chemo that might or might not work on an undiagnosable disease. Serious dose of big girl panties if ever there was a need... It is difficult to be strong when you see your kids, though. You can do it because you have to! No other reason needed.

I had a really bad week 2 weeks ago-crying, angry--wanting to "get things ready", but overwhelmed. Breathe deep and exhale. It passed by talking to other t/p patients who have done well. I have sort of adopted the theory that t/p patients who do well, don't go on these web sites regularly because the are cured or are doing really well and have moved on with their lives. That's my theory and I'm sticking to it!
Contact me through the website and we can talk more if you like.

[leeslay]

Hi everyone! It has been so long since I've been on here!! Very busy! So my admit date is November 16th! I will be getting my new marrow on the 24th. I am very nervous, excited, anxious and a bunch of different things all rolled together in one. Reading everyone else's posts sure helps. I am just about packed and ready. Had the last "pre" tests yesterday which is good because my blood level is already low!! How much do they really need? I will try to get on and give updates!!!

[launch]

Dear Lee,
We will be keeping an eye on you and will take you to the alter in prayer! I pray that the transplant goes easy for you and that you recover quickly!

Hugs, Cindy

[mausmish]

Hi Lee,

I'm right behind you, due for my bmt nov. 29-30, depending on what time the cells arrive. Best wishes to you. I can sure relate to all the emotions you're going through right now! Take care and stay positive. Will look forward to comparing notes with you.

Karen

[squirrellypoo]

Good luck, Lee and Karen! What great Thanksgiving presents to receive. I'll be thinking about you both as I tuck into my (expat) pumpkin pie!

[Laura]

Good luck Lee! Thinking of you also!
Laura

[leeslay]

Hello all!! So I am almost 30 days post transplant! I got out of the hospital briefly and then had to go back in for GVHD. Got out again 5 days ago. So far so good. I've been really tired and since I've lost about all of my body fat and some muscle I'm pretty weak. But trying to excersize a little every day even just walking around the apartment helps. Just wanted to check in!

[Neil Cuadra]

Thanks for the update, Lee. You had to navigate some rough spots but it sounds like you are on the road to a full recovery. The first 30 days are the most important!

Which type of GVHD did you experience?

[leeslay]

It has been a long road but not so bad. It started with a low grade temp and then progressed into a skin rash on my chest and back. We went in right away to the ER and I was admitted for another 5 days but things are looking great!! I went and got my labs done today and my HGB is 12.0, WBC 7.8, platelets 80. My counts have never gone up on their own so this is huge!!! My neut# was 3.9 on the 24th. So I would say this is a great success!! I have to get another bone marrow biopsy on the 5th, but I have great feelings about the results!!!