( Sorry for any mistake, I speak french here in canada, montreal )
To make a short story, I was Dx'd with AML M4 november 07 2010 ten days before my 23rd birthday! I got 1 round of induction and 3 round of consolidation, my last consolidation was 2 months ago. because i'm vietnamese it was quite hard to find a donor, they found a cord blood 4/6 match in south korea. the " bad thing " is that here in montreal at Maisonneuve-Rosemont hospital, they've never did any " business " with them. They don't know how things were done. And usually they do a screening for a disease on the blood (I forgot the name of the disease). But in the report they didn't mention any screening but only a small note that the baby is in perfection condition and there's no antecedent in the familly. Second option is haplo with a new protocol in the hospital. I'll try to explain the best as I can, from what I understood they will take cell from my mom and take out most of the antibody to prevent massive GVH. I will get a first transfusion and then they will also take my cells to mix with my mother cells to put in culture to grow. And then I will get a transfusion with these new cells. I didn't have the chance to meet the doctor that were in charge of that protocol yet so I didn't have much information. If anyone knows what I'm talking I would like to know what you think about those option.
I have had that haplo protocol....I know that they do that there in Montreal as I had a consult for a cord blood there as well...I had my haplo 131 days ago in Hamilton Ontario...and I am doing very well except for some mouth sore issues...my sister was my 1/2 match donor but it just as easily could have been one of my parents or my children. They will take cells from you and your mother and send them to the Netherlands where they will be treated under special light therapy so that the GVHD is calmed down...then after your conditioning you will get tcell depleted stem cells and then 35 days out you will get the specially treated cells...this protocol is getting very good results - 78% event free survival after 2 years and my transplant Dr here says this will revolutionize the transplant process and give donors to virtually all that need them....
They had found 2 6/6 cords for me but the Dr in Montreal said that the stats for that were not as good as for the haplo...I went with the haplo because the transplant site was closer to my home (only 3 hours away) as opposed to Montreal which is about 10 hours away from my home...
Good luck and please let us know what you decide to do...
Thank you Tex and CherylLynn
I wasn't really confident about the new protocol, because the way my doctor told me it felt like I was one of the first people to try it, but after what I heard from you cherylLynn, you made my choice leaning toward the haplo protocol. I have a bmb tomorrow june 1st, I will ask for more information about the protocol. I forgot to mention my mother is 63years old now and regular smoker, I'm not sure if age and tabacco could affect the process.
I had my transplant almost seven years ago. There was a guy in there with me who was having a haplo. So the haplo's not that new a development. About the same time a kid in Australia was getting his mom's haplo donation. He did have a relapse after five years (the only five year relapse I've heard of) but they got him another transplant and he's over a year out from that and doing pretty good. His mom checks in from time to time. Maybe she'll see this. Then she can point out how many mistakes I made in relating his story.
I can't see how your mom's age or habits can affect the marrow she's sharing with you. Ask your doc always about any concern, but I'm thinking this won't be a big deal.
Hi, my name is Linda and I had the haplo transplant last year on 5/18 at Baylor Hospital in Dallas. My son was my donor. The protocol I experienced was having the transplant and then they gave me some chemo 3 days after - to try to keep the GVHD at bay. I definitely can say I don't think I've had any GVHD, although I've had some skin irritation. A steroid cream took care of it in about 3 days. The Dr. took me off of all medicines within about 4 months and I lead a very normal life. I see my Dr. once a month for follow-up. The one issue I'm facing with the transplant is that my blood counts are low and not coming up. I don't feel bad, and it may just be my system. I may never experience a rise in the counts, but so far it's not been a problem. I even had gall bladder surgery after the transplant, and that went just fine. They gave me some platelets before the surgery because I was low, but no issues after that. They did find cord blood for me, but felt that wasn't the best option and recommended the haplo. I feel as Cheryl does - this will lead to others being able to always have a donor available, and I feel good about contributing to the research on this. I think the haplo has been around for several years, but they keep fine tuning the exact protocol they use. I did not experience any mouth sores with the transplant. My biggest issue was just fighting fatigue, and I will take that any day vs. GVHD and other issues. Good luck, and let me know if I can help in any way.
I have no GVHD...the mouth sores have tested positive for herpes simplex virus 1 and they tell me that they are hanging around because my counts are low...I have seen some improvement this week since my white count has come up a little....the Drs. in Hamilton do not expect any gvhd...the company that does the combining of the cells is Kiadis you may be able to find more information by looking them up - and ask for the trial protocol number that will be helpful in finding more results on them...before preparing to make the decision my Dr. sent me the phase 1 trial results (those are what I quoted to you) - this protocol is done in Hamilton and will now also be done in Toronto I believe...Montreal was the first to do this type of haplo here in Canada - I have also been contacted by a gentlemen whose wife just had it done in Ohio...there are many more European centres doing this as well...my Dr has a patient that was part of the phase 1 trial in Montreal 3 years ago, she is in remission and doing very well...she has been off all drugs since about 8 months after transplant. He told me that although there are not years and years of data, there is no reason to think that you will get to the 2 year mark event free and then relapse...I chose this protocol not only as a way to save my own life but also as a way to further this research..no one should be left without a donor...
Best of luck in your decision.
Hi, I thought that I chip in my experience here in case you want to consider cord blood transplant. I had double cord blood transplant, and have just reached 6 months after transplant. The conditioning treatment include total body irradiation (TBI) and two chemo regiments. It took 11 days. My cords were perfect matched (6/6), but the total cell dose is slightly lower than what it is suggested in the literature. Since I am a small Asian woman, my doctor thinks that I will do fine. From what I learned in research papers, some mis-match for cord blood could be a good thing too. Therefore, I think that 4 out of 6 will be fine too. The engraftment does take longer, but it will come eventually. So far, I encountered two times of skin rash, but they were not severe. I got controlled by prednisone quickly. Since I was a CMV positive before transplant, I have encountered CMV virus three times so far. This can be treated as well (a four weeks protocol). Every patient will go through fatigue and nausea stuffs during the transplant. Other than these, I think that the process is not terriblely bad. So far, my recovery is going well. One thing I would say is that if you choose cord blood transplant, you should look into how much experience your hospital has on this type of transplant. It is important. It sounds like that Montreal is good with haplo transplant. You might want to ask how many cases they have done.
Yes...by all means make sure that the transplant center you use has experience in the type of transplant you are looking at...I think having trust in your Dr is key...but you need to research all options...and have confidence in your decision and your team...a positive attitude goes along way in your recovering...as Yuji said everyone has fatigue and nausea - that's pretty common - but you are young and should do well
I am from Taiwan. They found these two cords from Singapore for me. Yes. Japan has banked a lot of cords. My husband is from Japan. In fact, my son was born in Japan, and we also donated his cord at that time. During my transplant, we met a visiting BMT doctor from Japan. He told us that they are not allowed to do double cords on adults yet. Therefore, they have to find a single cord with high cell dose. However, they still do a lot of cord transplant there. I still think that 4/6 match is good. I know that some studies showed that the relapse rate is lower for some mismatch.
I just had a bmb today, it's not my first one but when he pulls out the bone marrow the pain is so intense ! I also took an appointment with my doctor to ask her about the protocol. But last time I met her she told me that cord blood could be a little better for me in term of time because my last chemo was 2 months ago, and haplo could be in 7 - 8 week. But i'll try to meet the haplo team to get a better idea. I will give you guys all the next details asap. And btw I'd like to thank everyone for sharing their experience!
Well, for crying out loud, get yourself juiced up before the next BMB. They have a long range of things they can do, from conscious sedation to a combination of pain pills and anti-anxiety meds. If your doc doesn't believe in giving meds for a BMB, ask him/her if you can stick the damned needle into his/her ass to prove how "painless" it is.
i'm chinese from vietnam....been living in the us for 30 years now. my dad is in remission for CLL...but he's now transfusion dependent from harsh treatments.
just want to let you know that my thoughts are with you for a smooth procedure and recovery...with no GVH!
good night..hope you sleep soon.
Well, Binh, you and I will share a re-birthday! July 12 is my 3-year re-birthday, and for you, it's just getting started. But I feel very good about you, because I had a problem-free transplant recovery, no complications at all (no GVH), with just the normal recovery issues like mouth sores, nausea, vomiting, etc...all to be expected, and time-limited. So I'm keeping my fingers crossed that July 12 is your lucky day, too. Ask for something to help you sleep---and if they are giving you something for sleep, and it's not helping, ask for something else. Nobody gets great rest in a hospital, but they should help you get the best sleep you can. Sleep and pain control (like if you get mouth sores, not everybody does) are crucial for healing. I will certainly be thinking of you tomorrow, I still have my "day 0" candle my family gave me three years ago in a little re-birthday cupcake, and I will light it tomorrow and say a prayer for you. Keep us posted.
Thx pamd , to know that you share the same rebirthday as me and going well now, it gives me a lot of hopes. And for the transplant it was really smooth, took about 5 min to empty the bag! No fever or anything I was quite surprised. Should I worry for anything ? I feel 100x better then chimo and TBI.
It took three hours for me to get my cells. I'm sorry. You didn't even have a chance to sleep through part of it (the ultimate in being cool ).
Nothing to worry about. You should feel good the day of the transplant. Now, if you don't feel like absolute crap sometime in the next day or two, I'd ask what that's about. The day after my SCT was the worst.
It is great to hear things going well. Enjoy the good days. When the bad days come, don't get too upset or panic, because doctors are pretty good on treating problems and you just need to believe that it will go away eventually. I used Ativan in hospital almost every night to help me sleep. Take care!
Quick update guys! Today july 17 I'm on day 5 post transplant ! I got my neupogen shot, so far so good no nausea, sleep is ok now and I can eat back.The only thing I have is my gum are white and lil painful. I'd like to know people with cord blood how many days after transplant it took before you can go home? I know everyone is different but it's nice to know.
My adult son was a double cord, engrafted a little late, day 37 and was released on day 42. He was not cmv positive until a few days after he engrafted. He was on IV GCSF every day too, but had a wbc of 0 for about 5 weeks. Not everyone takes that long, hopefully you wont. He ran fevers from about day 12-16, no source identified, the nurses said it was quite common and could be engraftment fever, i don't know if that was the case or not since it took him another 4 weeks to engraft. Keep walking, keep using your voludyne, if your gums or mouth are getting bad, they can always give you a pain pump and put you on iv nutrition. It is quite common for transplant patients. Hang in there, take it day by day.
I was discharged at day +35 after my cord blood transplant. It took me several weeks to engraft but that seems to be the nature of cord blood transplants.
The nurses would write my WBC count on a marker board in my room and it seem stuck at 0.4 for the longest time. As soon as I asked them not to write it on the board, my counts went up. My discharge was delayed because of fevers of unknown origin but that seems fairly common also.
Every patient is different and we all seem to have different bumps in the road as we go through this process- but they have a lot of solutions to get us through. Keep up with your mouth care is my recommendation.
I had a cord transplant at the Hutch in Sept 2010. I was in the hospital for 32 days total, went home about 25 days after transplant. I was on a clinical trial with 2 cords + extra "washed" stem cells; I had neutrophil counts of 190 at day 8, but then they wavered between there and 400 for a few weeks. They did end up letting me out before I hit 500, though (because was trending that way and was on all oral meds, solid food, etc.).
I missed this the other day. Congrats on your transplant. Now the fun begins.
Typically you go home when you're able to take all your meds orally. They'll want to make sure you can eat and drink okay. I can't remember the other criteria at the moment. Chemo brain is real.
Keep your hands washed and stay healthy and that will help a lot. I hope your mouth is feeling better and that you're otherwise doing fine.