Unlike the protocol that was done at Mass General, this is a 100% full bone marrow transplant. Chemo, full body radiation, etc.I'm not sure I understand what they mean by a "100% full bone marrow transplant". I read up on the groundbreaking Mass General protocol (results published in 2008) and they definitely did use radiation and I would imagine chemo as well. Unless they are referring to a different study? Is the goal to get you off all post-transplant meds?
I'm not entirely familiar with the ones at North Western. However the bone marrow doctors I met with Friday said the protocol used at Mass General wasn't designed to fully replace the patients bone marrow. They only maintained the donor bone marrow for a few weeks, and then reverted back to their own bone marrow. Because of this, only a few were able to get off the immunosuppressants, and even then it was only for 9 years. This protocol at Hopkins I am doing is designed to completely engraft the donor bone marrow. If all goes well, I won't have any of my bone marrow left. The idea being that my tolerance for the kidney won't fade over time.OK, I think I understand what they are saying: that Mass General patients did not achieve durable chimerism, that is indeed true and it made coming off immunosuppressants a gamble for their patients. There were only 6, one I believe rejected outright (PRA ~5) and of the other 5 some have had to stay on low doses of immunosuppresants but as far as I have ever read or been told, their first patient continues to be off all immunosuppresants. I think the figure of 9 years comes from the fact that she has only been off the meds that long (I think it's more like 10+ years now, though.) You can read her whole story on Mass General's site. She does not have durable chimerism, but they believe that her ability to stay off the meds could be down to something called microchimerism, which from what I have read is not well understood yet. If you have heard anything more about her case of the other Mass General participants, I always love hearing that information and would appreciate any new info you could supply.
I'm curious to know how many patients in your trial achieved full chimerism.I'd have to look at my notes from the talk to see how many achieved 100% chimerism, but those who achieved what they considered a high enough level of chimerism were taken off all immunosuppresants. Chimerism levels did go up and down with most participants, but so long as they retained sufficient chimerism (not necessarily 100%) then they were able to come off the drugs, and almost all if not all of those stayed off all the drugs. I believe they claim an 80% success rate, but again I'd have to look at how they are defining "success". Not everyone was able to come off the drugs completely, and there have been a few unusual cases in the trial. I wish I had remembered to ask permission to record the talk because it was absolutely fascinating, the range of scenarios they had. With I believe only 20 participants, they somehow wound up with a range of ages (18-60+), levels of donor match, underlying causes for kidney failure, you name it.
As for my pra I don't know. I'm assuming its low as I've never had a transplant, been pregnant, or had blood transfusions. I also have been cross matched with my donor several times.Then odds are your PRA is zero. Fabulous!
To be honest I'm not sure I really want to know as I'm still going to go through it and its just one more thing to worry about.I think that's wise! Good luck and please keep documenting your progress.
The goal of all of them should be to completely engraft the donor bone marrow, but I'm confused about the claim that you won't have any of your own bone marrow left. Have they used the word 'chimerism'? Because by definition that is a hybrid, in other words you would have two immune systems co-existing harmoniously. If you will only have the donor's immune system then I would imagine this is something markedly different to what I had done.
That does sound like a great company to work for.
I had no idea you could feel your ovaries in this process. Sounds weird. Are your emotions a mess? It actually sounds like you're doing ok. I hope this works well!
I am officially in count recovery! I went from 270 white blood cells yesterday to 850 today. I am still super exhausted, but the dr. keeps telling me I'm doing and looking good.Hello Ninanna,
Wow. For the easy part, you can buy saline spray at the drugstore and use it frequently in your nose. It may help and you can use it as often as you want.
This may not sound right but you're lucky they found your PRES. Mine was not diagnosed until I was in a coma on life support. Did you have any seizures? I did not have any permanent vision changes but between PRES and a really bad case of CMV I lost my first transplant. I also lost a lot of my memory and concentration abilities. Are you totally off Prograf now? If your vision affects your ability to do your job you can get disability if needed. I'm sorry this happened to you. That CMV can be a real devil too. It will calm down in a few months hopefully.
All this crap at once can be really tough. Hang in there. I hope you have something fun to do with your time too.
Has anyone told you just how expensive that Valcyte is!!! My Pharmacist told me a tub of 28 tablets costs £1200 !!!! because it is not in general use.
But we are worth it ;D
Glad to hear things are improving.
Yay!! Outpatient and CMV free!
What is the product you make for ulcers?
Great progress! I hope things keep going well.
What great updates! Glad to hear that you seem to be on steady ground at last. I look for news on your experience in the trial every time I log on, so keep the posts coming, please.
Have they enrolled any other patients in this trial yet? Do you know when you are scheduled to be completely off the drugs? It took exactly one year for Northwestern's protocol.
Have they enrolled any other patients in this trial yet? Do you know when you are scheduled to be completely off the drugs? It took exactly one year for Northwestern's protocol.I got a little more information about the withdrawal timeline. At 6 months is a biopsy, then if that looks good they will start the taper. The prednisone and MMF will go first, the sirolimus last. I was a little disappointed to learn that it will take a full, so I won't be done until Feb :(
I got a little more information about the withdrawal timeline. At 6 months is a biopsy, then if that looks good they will start the taper. The prednisone and MMF will go first, the sirolimus last. I was a little disappointed to learn that it will take a full, so I won't be done until Feb :(I know it's easy for me to say, but once you get back into your normal life routine, the time will go by in a flash. I had some major problems after my one-year biopsy (to the point that the nurses urged me to withdraw consent for any future biopsies EVER, which I've done) so when the surgeon called me the day before my one year anniversary, I thought he was going to remark on that episode. Instead, he was calling to say stop taking all the drugs. I happened to get a call from my original donor straight after that, and when I told him he was very surprised and I think a touch nervous. He asked "Just like that?" Yes, just like that.
On an interesting note, I was sitting in the exam room with one of my BMT doctors, waiting for the others to show up, and your trial came up. I mentioned about reading that of their first 4 participants, only 1 was able to get off the drugs. His response was, "oh I know, dr [your surgeon] consulted with me about it."I love hearing about how they all interact! They all know each other and know each others' work and will assist when asked, but I have always strongly suspected it's an uneasy relationship. They are in competition to some extent. Yes, I think they adjusted the method for prepping the stem cells for transplant after patient 4. I was not privy to this info, but I'm sure it's so technical that I wouldn't have understood it on any helpful level. Honestly, patient 2 should not count against their method as that was just a tragic fluke. Since the adjustment I believe (and I have no notes on this, so could be completely wrong) that they've found that they can achieve high levels of durable chimerism in their patients, so long as the patient PRA is under a certain threshold. I was mildly sensitized and have unwaveringly durable chimerism, so some level of PRA is fine (wrong again, Mass General!) I actually have my tubes for a chimerism draw sitting right in front of me, and no clue how I am going to get them done. Hopefully my results will be as normal.
As for other participants, they have had lots of interest, but they are finding their protocol for who they take is kicking everyone out. I think they may found patient #2. Last week the surgeon did ask me if I would be willing to talk to any other potential trial participants and I said of course.I had to plead for them to request a protocol deviation from the FDA. I am so grateful that they were willing to go to this extra work for me. I spoke with one potential participant who was trying to decide which direction to go, but I think ultimately she decided against the trial. I also spoke with a woman who had already undergone the transplant - I think she was having anxiety attacks after the operation and wanted to speak to another female participant? (That left her with no options back then.) I think my 'whatever' attitude toward transplant did make the research team think that I would probably be an ideal person to calm her down. The other participant was very cool, and we had a fair bit in common. I think we could have become very good friends if I had stayed in America. I also posted on IHD that they were seeking participants and was happy to be slammed with PMs from people asking for details. One member went so far as to contact them, but she decided against it in the end. I told the research coordinator that I thought I was too honest because no one that I spoke to ultimately went through with the trial. The extra risk isn't for everyone, but I was so sure it was going to work that I didn't even see the extra risk and was surprised at how many people told me that they found the protocol "scary". Northwestern also asked me to talk to the government reps who were looking after the funding of this, but I was on holiday out of the country. I would have been honored to do it, though. My guess is that you'll be asked to speak about this protocol many, many, MANY times. :)
Thanks so much Cariad! I actually tried to PM you to tell you how much I enjoy reading your posts all over IHD, and how your experience with this type of procedure helped me make my decision, but your inbox was full >.<Aw, thanks! I do witter on, but I have been a transplant patient for sooooooo long, I guess I have a lot to say! Sorry about the inbox. I will have to make time to clear out all the messages I've been hoarding. :waving;
An amaxing experience. You give hope to those of us that only dream of ever becoming anywhere near 'normal' again.
You have been through a lot, I can only try to imagine how I would fare if I ever get the opportunity.
But the idea of having donor bone marrow and making a full recovery and eventual NO immune-suppresants, well, it is not science fiction.
Thank you for your bravery to help establish a much better prognosis for many of us. I don't doubt that treatment like yours may one day become ac ommon thing, helping many to stay off dialysis.
Thank you.
You're doing awesome! I admire the strength you've shown in getting through all of this. Is going back to work part-time for a while an option? I started back that way and I was very glad I did. I was able to get out of the house and feel productive, but after I put my half day of work in, I loved having the afternoons free to go out to play. It seemed like the best of both worlds.
I've been watching and am amazed at the strength you've shown. When I first heard you were having this done, I was jealous. I wanted to go down this route, but I couldn't. Now that I'm seeing how difficult it has been for you and I'm amazed that you're still sane! I understand the need to go back to work as a distraction. I went back earlier than I had to for the distraction, too and my experience has been a breeze compared to yours.
Platlets, white counts, and even my red blood cells are officially on the rise! I have 33k platelets which is a record breaker for the past several months. I soo hope last week was my last blood transfusion. My Kidney biopsy is scheduled for the 30th of July which is three weeks away. If I am super lucky I might not need a platelet transfusion before hand! Hair is continuing to grow and right now I couldn't be happier!
Thanks Prime Timer and Talker, it really means a lot!No, thank YOU for being such an inspiration and a load of strength! I know, your poor body is hard at work but you are also performing a sort of "silent" duty to your fellow site members here, you just didn't know it! Thanks! :bump;
the oncologist on call was about to just send over an antibiotic prescription and call it a day, but the more she looked at my chart the more she was like, "oh, you have a unique complicated history, I need to consult with another doctor on how aggressive they want to be, I'll call you back"I got the 'you're too complicated for your local ER' too. Few things are as depressing as being wrung out and facing a 90 minute drive down to Chicago at midnight.
Interns can be pretty amusing. I once had one who had some kind of bottomless pocket. Every morning he came in around 5am to do his rounds. He would start emptying his lab coat pocket on my bed to look for what he needed. He had so much crap in there. Then he would stuff it all back in his pocket and leave and I guess repeat it in every room. Unfortunately, he wasn't very good at his job. I could hear the real docs quizzing him outside my room and it never went well.
I figured they'd be all over you like leeches. Tons of blood tests. Those units of blood were just to replace what they took out, right?
Glad you're getting out. My niece was in the hospital in 2010 for 9 months, mostly ICU. After the first $3 million spent, you get special attention.
I got the 'you're too complicated for your local ER' too. Few things are as depressing as being wrung out and facing a 90 minute drive down to Chicago at midnight.
Glad they released you. I guess I was cheap - no insurance or hospital billing rep ever offered to meet with me.
Did you enjoy your Thai food? Sounds yumtastic!
So some good news today! Chimerism is 100% and I have zero antibodies! The kidney biopsy also went well and came back negative for rejection. The only hold up now is the biopsy slides have to be re-read by an independent pathologist, and that could take up to a week. But once we get the green flag for that I can start weening. I think the plan is to be off the cellcept in 2 weeks, and off the prednisone in 4 weeks. They are pretty confident that the kidney will be great and I think their only real concern at this point is to watch for GVHD.:yahoo; :yahoo; :yahoo;
Thank you so much everyone for the support and cheers!Ah, thanks for the explanation, that makes sense I suppose. Always possible I'm remember the myfortic part wrong, but I was on such low doses of immunosuppresants that I don't think there would have been much to work with anyhow. NW does not use steroids unless there is no other option, so pred was thankfully not part of the equation for me. (I was on it for decades, though, so let it never be suggested that I don't know that drug very, very well indeed!)
Cariad: They are tapering everything (prednisone, cellcept, and sirolimus when I get there). Other than the pred I just think it is part of their safety protocol, to hopefully be able to catch a rejection episode in time before the kidney blows up. It's unlikely to happen at this point but I guess you never know. Interestingly one BMT doc originally wanted to just stop all the rejections meds at once, but the kidney people said "no way" lol.
So finally after a lot of delaying getting the biopsy slides read by an independent pathologist and a GVHD scare, I got the green light to start winning (weaning) on Monday!Ah, finally , like Sinatra used to say
It will take 4 weeks to get off the pred/MMF, then I have to have a month on mono therapy before they do all the tests all over again and start the rapamune withdrawal.
In other good news, I should be full time again at work in a couple weeks, plus I got a promotion!
Cass, Jeannea, PrimeTimer, SooMK, you guys are the best. Your support and well wishes really mean a lot.
I think this whole fluid around the heart and infections are much more serious than how I was taking it. I mean they had to write a major deviation to their protocol that they spent a lot of time on, because they feel it's in my best interest. Also today, one of the doctors asked me today if this recent experience made me feel different about the trial...like if I had any regrets. To me it was a strange question, because I felt mostly fine before I went to the hospital, and I feel fine now. But I guess he wouldn't have asked that if it wasn't serious. Of course my answer was no.
Since I'm off the cellcept and my rapamune dose is almost zero at this point, my cell counts have done a complete 180 in 36 hours. Quite incredible really. My kidney biopsy is this Wednesday, hopefully they get the secondary reading faster than they did last time so I can stop it all together. At least some good can come of this for future patients. I may have shown that if you have full chimerism and no signs of GVHD, it might actually be riskier to stay on these drugs for a whole year. This could potentially shorten the process, so that it's done in 6 months instead of a year.
Ironically I have been telling them since April, "You know, September 26th is my 30th birthday, it would be nice if you guys could have me off the drugs by them." I've said it so much they are probably sick of it. But now, it looks as if they are going to meet that deadline! >:D