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Re: Allo General Questions
Thank you for your replies. My multiple myeloma doctor is Dr Siegel and Dr Vesole and my transplant doctor is Dr Donato, who has transplanted me twice before. All three are at Hackensack University Medical Center.
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CMolinaro
Re: Allo General Questions
Hi,
I have posted on one of your other questions but I thought I would add to this thread as well. I have replied to a few of your questions.
You wrote "My question is, is it the actual transplant which is risky or is it after the transplant?"
If you look at the risks that are involved in the transplant they are 1)chemical, 2)infection and 3)donor cells. After the transplant it is pretty much the same except the chemicals might change. What would be your risk (it could be mortality or decrease in QOL) for the chemicals? Would you have myeloablative conditioning (I am assuming you did for your auto) if that is the case then your risk for chemical is going to be similar to what it was with your auto. If you are going to have a mini allo with reduced conditioning then the risk is probably going to be less than your risk was with the auto. There probably would be some side effects. The possibility of infection is very real when you are on immunosuppressive drugs or you dont have a functioning immune system. This risk can be minimised by being vigilant & by prophylaxis. Take the anti-fungal, anti-bacterial and anti-viral drugs, stay away from crowds, ensure people with colds dont visit you and educate your local doctor (without showing him/her) on how quickly a sore throat can turn into a lung infection. The last risk is possibly the biggest risk and also possibly our cure.
"What are the side effects of GVHD that is so bad?"
I have had both acute and chronic GVHD. My chronic GVHD is sometimes seen in patients who have had acute liver GVHD and it can take up to 2 years after the liver GVHD to develop. Mine took less than 6 months to develop. What was/is so bad about it. Luckily I was in hospital at the time with a lung infection when my liver developed GVHD. On the Thursday morning I had slight yellowing of the eyes (not everyone noticed). Early (~2 am) Friday morning my urine had turned brownish and I had a tan all over. By lunch time my urine was a dark tea colour. My liver was failing fast, the biopsy I had after lunch confirmed the GVHD at stage III/IV and I was started on prednisolone that night. One of the risks of GVHD is recognizing it.
When you guys mention quality of life, what specifically are we talking about?
My chronic GVHD slowly crept up and put a big dint in my QOL. My chronic GVHD is on the fascia of the muscles, it severely restricts muscle movement. Before going back on the good old 'roids I could hardly wipe my ar....It was pretty restrictive. At the time (~ July last year) I said to my husband I didn't know how much more of this I could take. Thats when I told the Doctors that there was something seriously wrong and that my muscles were effed. Again I will say One of the risks of GVHD is recognizing it. This chronic GVHD went undiagnosed for a while because it didn't present "normally" and the doctors thought my muscle soreness was due to the steroids (dose and duration) .
There is a positive side, I am in remission and my chronic GVHD is getting less. I saw one of the doctors in the myeloma clinic last week and she said "now in 2 years time you are going to have to...". 2 years ago my prognosis was 18 mths. Last year I could hardly wipe my ..... and yesterday I was out in the garden hoeing out blackberry bushes. It feels wonderful to be alive.
All the best,
Libby
I have posted on one of your other questions but I thought I would add to this thread as well. I have replied to a few of your questions.
You wrote "My question is, is it the actual transplant which is risky or is it after the transplant?"
If you look at the risks that are involved in the transplant they are 1)chemical, 2)infection and 3)donor cells. After the transplant it is pretty much the same except the chemicals might change. What would be your risk (it could be mortality or decrease in QOL) for the chemicals? Would you have myeloablative conditioning (I am assuming you did for your auto) if that is the case then your risk for chemical is going to be similar to what it was with your auto. If you are going to have a mini allo with reduced conditioning then the risk is probably going to be less than your risk was with the auto. There probably would be some side effects. The possibility of infection is very real when you are on immunosuppressive drugs or you dont have a functioning immune system. This risk can be minimised by being vigilant & by prophylaxis. Take the anti-fungal, anti-bacterial and anti-viral drugs, stay away from crowds, ensure people with colds dont visit you and educate your local doctor (without showing him/her) on how quickly a sore throat can turn into a lung infection. The last risk is possibly the biggest risk and also possibly our cure.
"What are the side effects of GVHD that is so bad?"
I have had both acute and chronic GVHD. My chronic GVHD is sometimes seen in patients who have had acute liver GVHD and it can take up to 2 years after the liver GVHD to develop. Mine took less than 6 months to develop. What was/is so bad about it. Luckily I was in hospital at the time with a lung infection when my liver developed GVHD. On the Thursday morning I had slight yellowing of the eyes (not everyone noticed). Early (~2 am) Friday morning my urine had turned brownish and I had a tan all over. By lunch time my urine was a dark tea colour. My liver was failing fast, the biopsy I had after lunch confirmed the GVHD at stage III/IV and I was started on prednisolone that night. One of the risks of GVHD is recognizing it.
When you guys mention quality of life, what specifically are we talking about?
My chronic GVHD slowly crept up and put a big dint in my QOL. My chronic GVHD is on the fascia of the muscles, it severely restricts muscle movement. Before going back on the good old 'roids I could hardly wipe my ar....It was pretty restrictive. At the time (~ July last year) I said to my husband I didn't know how much more of this I could take. Thats when I told the Doctors that there was something seriously wrong and that my muscles were effed. Again I will say One of the risks of GVHD is recognizing it. This chronic GVHD went undiagnosed for a while because it didn't present "normally" and the doctors thought my muscle soreness was due to the steroids (dose and duration) .
There is a positive side, I am in remission and my chronic GVHD is getting less. I saw one of the doctors in the myeloma clinic last week and she said "now in 2 years time you are going to have to...". 2 years ago my prognosis was 18 mths. Last year I could hardly wipe my ..... and yesterday I was out in the garden hoeing out blackberry bushes. It feels wonderful to be alive.
All the best,
Libby
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LibbyC - Name: LibbyC
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43
Re: Allo General Questions
Hi Chris
i have been up to see your Dr.my light chains have also started to go up.i would like to give you a call if possible.i live in n.j.
Al
i have been up to see your Dr.my light chains have also started to go up.i would like to give you a call if possible.i live in n.j.
Al
Re: Allo General Questions
Just a quick update, I'm seeing the transplant doctor today to gain some more insight on the Allo transplant, if that is what needs to happen and will give me the best chance of living a long and healthy life. Will keep you posted.
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Cmolinaro
Re: Allo General Questions
So I met with the transplant Doc today, who has transplanted 2x in the past and I feel much more at ease with the procedure. They are going to see if my parents or brother are half matches, which HUMC is now utilizing with very good results. If they are not a match, then we will try the registry and see what they find. I believe they already found someone who is a 9 out of 10 match, but that is just preliminary. Now I could do another Auto, but that would be the 3rd one and would just put my body thru that much more toxicity then at some point I would need an Allo. So from a toxicity perspective, an Allo is more toxic friendly. Also I am 35 years old, and am extremely active, so I think this might be my best bet.
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Cmolinaro
Re: Allo General Questions
Hi Chris,
Thanks for the update. It is interesting to read that they are having success with a partially matched family members. A nice lady that posts here named Dana did a haploidentical transplant. As you can see on Good Morning America, Robin Roberts was 52 when she did hers and she is doing great. Exactly how I expected her to do. If it was as dangerous as the people that post here that have never done one think they are I doubt a big star like Ms. Roberts would decide to do it as part of her upfront therapy for MDS. Please keep us posted on how things progress. I am celebrating 2 years of DRUG FREE remission. Doing the allo as soon as I could was the best decision I could have made.
Mark
Thanks for the update. It is interesting to read that they are having success with a partially matched family members. A nice lady that posts here named Dana did a haploidentical transplant. As you can see on Good Morning America, Robin Roberts was 52 when she did hers and she is doing great. Exactly how I expected her to do. If it was as dangerous as the people that post here that have never done one think they are I doubt a big star like Ms. Roberts would decide to do it as part of her upfront therapy for MDS. Please keep us posted on how things progress. I am celebrating 2 years of DRUG FREE remission. Doing the allo as soon as I could was the best decision I could have made.
Mark
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Mark
Re: Allo General Questions
What does "during CR1" stand for? Sorry...my Dad has multiple myeloma and I am not sure what everything means, but am trying to learn as much as possible. He has had one auto, but it not lasted for 19 months. He started Revlimid in January and then decided to continue with a maintenance dose and prolong his time between transplants...we found out this week that the low dose is not working. They will most likely want to auto transplant again...but I want him to do what is best for his OS....as when his numbers start to go up....they really go. I am afraid that there is no "maintaining" his multiple myeloma with drugs alone. I cannot fathom losing him. He is 56, and before his multiple myeloma was the epitome of health 
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ARobinson
Re: Allo General Questions
Hi CMolinaro and Mark! Yes, I did have a mini haplo using one of my brothers as a donor nearly two years ago, and I did not have any problems to speak of. Gvh was minimal, and I found the entire process lengthier but easier than an auto. At Johns Hopkins, the mini allos are done as out-patient procedures, and they have been doing half-matched allos for more than 20 years with excellent results. My doctor said that their statistics do not show a significant difference berween a full match and a half match in terms of effectiveness; however, there is an increased risk of gvh with a haplo if you were to need a donor lymphocyte infusion to consolidate the transplant. I do need to consolidate my transplant; unfortunately, I did not reach a molecular remission like Mark did and so my doctor offered me several options: Revlimid/dex, a DLI, or another mini haplo transplant using one of our children as a donor. We decided, and she agreed, that another bmt was best for me. It offers a 20% chance of a cure, which the Revlimid can't offer; it is less risky than a DLI, and I have had amazing QOL since my first transplant. Johns Hopkins has only recently started doing a second bmt for blood cancers, but they look to be very promising. While I know there are no guarantees, I had a great experience with my first allo and being off drugs for two years has been the BEST reason to go through with it. The death rate from an allo at my hospital is much lower than what Multibilly cited and is between 10-15%, lower than the chance of a cure. Only your doctor can help you decide if the odds are in your favor; I would advise having an allo only at an experienced facility with a strong track record. By the way, a consolidation transplant is only effective while in remission, and so I cannot wait until I relapse to have it, which makes it quite a leap of faith to undergo this procedure before I "need" it and quite interesting to be here in Baltimore while feeling so well. I have not had any trouble with my insurance, even though I have not relapsed and am not part of any special trial (I have Blue Cross Blue Shield). There are many options out there--this one was not even available to me at my hospital a few months ago! So hang in there and keep doing your homework. You will know when you find the right treatment for you. God be with you, Dana
P.S. "CR1" means "first complete remission", to the poster above me!
P.S. "CR1" means "first complete remission", to the poster above me!
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Dana - Name: Dana
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43
Re: Allo General Questions
I am now about 10 months post allo transplant and have chronicled some of my experiences and thoughts pre and post transplant in my column in the Myeloma Beacon Arnie's Rebounding World.
Just a few thoughts to add to the discussion. It is certainly a very difficult decision to which there is no right or wrong answer. I tried to listen to as many opinions as I could on both sides I tried to read as many papers as I could about allo transplant to help make the decision but found it to be very unhelpful. The data seems to be all over the place and every situation is so different it is difficult to draw conclusions, but a few things do become clear. First it is important to have good disease control going into the transplant. Going into the transplant with active and growing disease is likely doomed to failure. Second there are a few people who get very long lasting results or even a "cure" however this is a relatively small percentage. Third there is a significant risk to the transplant and post transplant period and although these numbers are improving all the time the mortality in the first year is still about 15%.
i also tell people that there are two separate issues to consider. One is will the transplant be successful at controlling my multiple myeloma. Second is will I die from a transplant related complication or be miserable from chronic graft vs host disease. Neither of these are questions that can really be answered going in. All of this has to be weighted against the question of how effective the current drugs are and what the chances are of newer drugs coming along and helping.
Having said all of that, I have no regrets about my decision to have the transplant. While I did not get the home run result that I had wanted, I have a small amount of graft vs host which is manageable and my quality of life is good. I do feel that the transplant has been helpful in that it has allowed the drugs to work that were not working before and I have bought some time.
I agree completely with the comment better to swing for the fences than to stand and take a called third strike
Just a few thoughts to add to the discussion. It is certainly a very difficult decision to which there is no right or wrong answer. I tried to listen to as many opinions as I could on both sides I tried to read as many papers as I could about allo transplant to help make the decision but found it to be very unhelpful. The data seems to be all over the place and every situation is so different it is difficult to draw conclusions, but a few things do become clear. First it is important to have good disease control going into the transplant. Going into the transplant with active and growing disease is likely doomed to failure. Second there are a few people who get very long lasting results or even a "cure" however this is a relatively small percentage. Third there is a significant risk to the transplant and post transplant period and although these numbers are improving all the time the mortality in the first year is still about 15%.
i also tell people that there are two separate issues to consider. One is will the transplant be successful at controlling my multiple myeloma. Second is will I die from a transplant related complication or be miserable from chronic graft vs host disease. Neither of these are questions that can really be answered going in. All of this has to be weighted against the question of how effective the current drugs are and what the chances are of newer drugs coming along and helping.
Having said all of that, I have no regrets about my decision to have the transplant. While I did not get the home run result that I had wanted, I have a small amount of graft vs host which is manageable and my quality of life is good. I do feel that the transplant has been helpful in that it has allowed the drugs to work that were not working before and I have bought some time.
I agree completely with the comment better to swing for the fences than to stand and take a called third strike
Re: Allo General Questions
I'm seven months post Haplo Allo. I had no choice because my auto transplant for myeloma produced a secondary malignancy (AML), which essentially requires an allo transplant. I was extremely lucky and received a CR from the induction and consolidation chemo that followed my AML diagnosis, so I was able to receive the Allo transplant in "CR1" (first remission). Meanwhile my myeloma had responded well to the Auto, but didn't disappear. It has continued to dwindle since the allo but is still measurable at a slight level. I have been fortunate so far because I had relatively minor acute GVHD (skin) and am tapering at this point. AML is still in remission. Doctors hope that we'll get a 2 for 1 result on the Allo (AML and multiple myeloma).
All that said, I think all the input above is really appropriate, and that the decision to transplant or not is extremely personal and needs to be carefully weighed in the context of the risks and benefits. I doubt that I would have considered an allo if the AML didn't force the issue, but I realize at this point that for me (with the turn of good luck that I've had more recently!) the allo definitely has represented my best shot at that "home run". My QOL remains good (and has been since the beginning of the allo).
Good luck on this decision!
All that said, I think all the input above is really appropriate, and that the decision to transplant or not is extremely personal and needs to be carefully weighed in the context of the risks and benefits. I doubt that I would have considered an allo if the AML didn't force the issue, but I realize at this point that for me (with the turn of good luck that I've had more recently!) the allo definitely has represented my best shot at that "home run". My QOL remains good (and has been since the beginning of the allo).
Good luck on this decision!
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