ANGIOIMMUNOBLASTIC T-CELL LYMPHOMA (AITL) -- have to make a serious decision regarding autologous st

Kata

Dear Members,

I am new to this forum and would very much appreciate your take on my dilemma. My husband of 20 years, now 65 years old, whom I love from the depth of my being, has just gone through 6 cycles of CHOP chemotherapy and we're waiting for the result of the PET scan he had last Thursday. He has been, save for AITL, in good overall health (save for hemochromatosis that is kept under control), has handled CHOP with remarkable strength and relative ease after having been diagnosed on October 1st, 2012 with stage 3 AITL. Our own hematology team has suggested an immediate autologous stem-cell transplant/high-dose chemotherapy following the hoped-for full remission, starting this month, but another very highly esteemed t-cell expert in the field whom we just saw in a large Canadian centre has just told us that this procedure as a first-line therapy is not proven to have any advantages over merely CHOP for AITL patients and therefore they do not consider stem-cell transplant until after complete remission following a relapse. Plus he added that they would not even consider it in my husband's case as he has just turned 65. 
This leaves us between a rock and a hard place, the decision has to be made as to whether we should opt for the autologous stem-cell transplant if he has full-remission as a first-line therapy advocated by our hematology team, or if we should indeed have a wait-and-see approach. I should mention that his lymph nodes, though spread over the upper chest and neck and abdomen at first (without any metastasis) had been small in size to start with (with the largest one less than 2cm in diameter) and the CT scan at the middle of the treatment had shown significant improvement already, with no lymphoma found under the diagphragm and only small lymph enlargments above it.

I would very much appreciate if you could kindly refer me to any recent knowledge that might help in this decision. I had already searched and found several articles related to AITL and autologous stem-cell transplant performed several years ago with relatively good results but I could not establish if these results were achieved after the transplant being upfront or after relapse.

I have been in touch with a very kind lady through the buddy system earlier whose father, older than my husband and who had been diagnosed last year with stage 4 type B AITL, went through 8 CHOPS, had full remission and so far has been doing great, thankfully...

Thank you so very much for your kind help in advance,

Kata

po18guy

No easy decisions

Welcome, although this is not the place to have to be welcomed to! T-Cell Lymphomas are known for relapsing. They are almost expected to relapse. Mine ("AngioImmunoblastic-like" Peripheral T-Cell Lymphoma - Not Otherwise Specified) immediatlly relapsed even though I had CHOP plus Etopside, Vinorelbine, Doxil and Gemcitabine. Some varieties respond very well to CHOP, while others seem to take little notice of it. I will pray that your husband's responded well to it. A funny thing about lymphomas is that they do not metastasize, since they are a liquid, or blood-borne cancer. They flow wherever they want to in the body. Even stage 4 with bone marrow involvement is easily treatable, and stage 4 lymphoma is not nearly as worrying as stage 4 in "solid tumor" cancers. The type of lymphoma is the worry, not so much the stage.

Since you are in Canada, your options are probably different than here in the states. An autologous transplant (your husband's own cells) may provide a durable remission if he is in full response from the CHOP. I know that age 60 or so is a sticking point for allogeneic (donor) transplants. I could never get into remission, so either form of transplant was out in my case. If his AITL ends up being refractory (not fully responsive) or relapsed, it is another situation altogether. But, that may be putting the cart before the horse at this point. Wait to see what the report says and then the hard choices will have to be made.

There are several non-chemo drugs that treat relapsed T-Cell Lymphomas. The one I receive, Istodax (Romidepsin), has kept me in full response for basically four years now. There is also Vorinostat (SAHA) as well as Adcetris (SGN-35). Another chemo-class drug that is also available is Pralatrexate (Folotyn) . There may even be a clinical trial of one of the new Aurora Kinase Inhobitor drugs which are showing considerable promise in T-Cell cases. The sad fact is that T-Cell Lymphomas do not allow much time for decision making. My variety runs its course in about 6 months, and I was almost three months into it before I was even diagnosed. 

You might have your husband's case sent to the states for an opinion on treatment. Fred Hutchinson in Seattle has saved my life twice now, and they have some of the best T-Cell doctors on earth. I do believe that the time for an autologous transplant is at first remission. Even though my initial prognosis was poor, and dropped to very poor at the end of chemo, I will have five years into this journey at the end of next month. All the best to you and your husband.

illead

We had the same decision to make

Hi Kata,

     My husband does not have the same lymphoma, his is Mantle Cell.  It is a rare one and also will relapse with chemo not very effective the 2nd time around.  He has been in remission a year now.  In our research we came across the names of specialists with MCL 1 in the states and 2 in Germany that we decided to ask.  Since  a SCT is suggested for MCL, we were also undecided.  We emailed each doctor and all three answered back.  They all concluded that since he was in remission they would not suggest a SCT.  Since there is so much research going on for MCL, they said there will most likely be something new when he relapses.  We decided to wait.  Of course your husband's lymphona is different.  Bill's bone marrow was 90% packed with cancer, no nodes were involved.  So you may want to do some more research and besides MCL other lymphomas are being researched also.  Perhaps you can get some other opinions.  BTW, Bill was 63 when diagnosed in July of '11.  Welcome to site, it is very encouraging here.

  Our best to you both, Bill and Becky

Kata

po18guy said:

No easy decisions

Welcome, although this is not the place to have to be welcomed to! T-Cell Lymphomas are known for relapsing. They are almost expected to relapse. Mine ("AngioImmunoblastic-like" Peripheral T-Cell Lymphoma - Not Otherwise Specified) immediatlly relapsed even though I had CHOP plus Etopside, Vinorelbine, Doxil and Gemcitabine. Some varieties respond very well to CHOP, while others seem to take little notice of it. I will pray that your husband's responded well to it. A funny thing about lymphomas is that they do not metastasize, since they are a liquid, or blood-borne cancer. They flow wherever they want to in the body. Even stage 4 with bone marrow involvement is easily treatable, and stage 4 lymphoma is not nearly as worrying as stage 4 in "solid tumor" cancers. The type of lymphoma is the worry, not so much the stage.

Since you are in Canada, your options are probably different than here in the states. An autologous transplant (your husband's own cells) may provide a durable remission if he is in full response from the CHOP. I know that age 60 or so is a sticking point for allogeneic (donor) transplants. I could never get into remission, so either form of transplant was out in my case. If his AITL ends up being refractory (not fully responsive) or relapsed, it is another situation altogether. But, that may be putting the cart before the horse at this point. Wait to see what the report says and then the hard choices will have to be made.

There are several non-chemo drugs that treat relapsed T-Cell Lymphomas. The one I receive, Istodax (Romidepsin), has kept me in full response for basically four years now. There is also Vorinostat (SAHA) as well as Adcetris (SGN-35). Another chemo-class drug that is also available is Pralatrexate (Folotyn) . There may even be a clinical trial of one of the new Aurora Kinase Inhobitor drugs which are showing considerable promise in T-Cell cases. The sad fact is that T-Cell Lymphomas do not allow much time for decision making. My variety runs its course in about 6 months, and I was almost three months into it before I was even diagnosed. 

You might have your husband's case sent to the states for an opinion on treatment. Fred Hutchinson in Seattle has saved my life twice now, and they have some of the best T-Cell doctors on earth. I do believe that the time for an autologous transplant is at first remission. Even though my initial prognosis was poor, and dropped to very poor at the end of chemo, I will have five years into this journey at the end of next month. All the best to you and your husband.

Dear po18guy, 
I SO SO MUCH

Dear po18guy, 

I SO SO MUCH appreciate your early and detailed response, am so happy to hear your wonderful remission, God bless you and give you many many more healthy and happy years! 
What you are saying is absolutely true, AITL is a difficult type to say the least--it often relapses soon after CHOP. Since my husband has just turned 65, we are concerned that, provided there is a favourable response from the PET scan of last week, running into a fast auto transplant/high-dose chemo might be enormously taxing and dangerous for his system (there must be a reason why certain centers do not offer it after age 60 or 65) as the specialist we saw yesterday said that there was no evidence that having it with AITL would be more beneficial than not having it at all as a first-line treatment; he said that if my husband were younger, he'd do a wait-and-see approach, and in case of relapse, he would consider first achieving full remission and then either an experimental treatment (perhaps like yours but unfortunately here in Canada both Pralatrexate and Istodax would either be unavailable or cost arms and legs) or auto transplant/high-dose chemo. He said that the latter would be more favourable if there was first a relapse, then new chemo, remission, and then the transplant... What we'd like to avoid is going into a super-harsh treatment with a 3% mortality rate and additional serious side effects of all kinds only to have the AITL come back afterwards, in which case I understand our chances would be quite poor. We're trying to reach our hematologist in town and see if she'd consent to performing the auto transplant in case there were a relapse-then-remission... 

But as you say, we cannot put cart before the horse, we are still waiting to hear back the PET sc. result...

Whom did you see at Fred Hutchison in Seattle? Wonder if they have any international programs. However, we're also aware that seeing many renowned specialists might just make it even harder to decide... and as you aptly write, time is of the essence...

Thank you so much. I wish you the very best from the bottom of my heart. Thanks for responding, and so soon.

Warmly,
Kata

Kata

illead said:

We had the same decision to make

Hi Kata,

     My husband does not have the same lymphoma, his is Mantle Cell.  It is a rare one and also will relapse with chemo not very effective the 2nd time around.  He has been in remission a year now.  In our research we came across the names of specialists with MCL 1 in the states and 2 in Germany that we decided to ask.  Since  a SCT is suggested for MCL, we were also undecided.  We emailed each doctor and all three answered back.  They all concluded that since he was in remission they would not suggest a SCT.  Since there is so much research going on for MCL, they said there will most likely be something new when he relapses.  We decided to wait.  Of course your husband's lymphona is different.  Bill's bone marrow was 90% packed with cancer, no nodes were involved.  So you may want to do some more research and besides MCL other lymphomas are being researched also.  Perhaps you can get some other opinions.  BTW, Bill was 63 when diagnosed in July of '11.  Welcome to site, it is very encouraging here.

  Our best to you both, Bill and Becky

Thank you so much, Bill and Becky,

many thanks for your kind response. Yesterday our specialist told us that the ONLY t-cell lymphoma to have been proven to respond well to the auto stem-cell tr. is mantle-cell lymphoma. That might be a welcome news for Bill. Hope he will be in remission for many more happy years! We wish you all the very best... thank you so much for your response!

Kata

po18guy

Kata said:

Dear po18guy, 
I SO SO MUCH

Dear po18guy, 

I SO SO MUCH appreciate your early and detailed response, am so happy to hear your wonderful remission, God bless you and give you many many more healthy and happy years! 
What you are saying is absolutely true, AITL is a difficult type to say the least--it often relapses soon after CHOP. Since my husband has just turned 65, we are concerned that, provided there is a favourable response from the PET scan of last week, running into a fast auto transplant/high-dose chemo might be enormously taxing and dangerous for his system (there must be a reason why certain centers do not offer it after age 60 or 65) as the specialist we saw yesterday said that there was no evidence that having it with AITL would be more beneficial than not having it at all as a first-line treatment; he said that if my husband were younger, he'd do a wait-and-see approach, and in case of relapse, he would consider first achieving full remission and then either an experimental treatment (perhaps like yours but unfortunately here in Canada both Pralatrexate and Istodax would either be unavailable or cost arms and legs) or auto transplant/high-dose chemo. He said that the latter would be more favourable if there was first a relapse, then new chemo, remission, and then the transplant... What we'd like to avoid is going into a super-harsh treatment with a 3% mortality rate and additional serious side effects of all kinds only to have the AITL come back afterwards, in which case I understand our chances would be quite poor. We're trying to reach our hematologist in town and see if she'd consent to performing the auto transplant in case there were a relapse-then-remission... 

But as you say, we cannot put cart before the horse, we are still waiting to hear back the PET sc. result...

Whom did you see at Fred Hutchison in Seattle? Wonder if they have any international programs. However, we're also aware that seeing many renowned specialists might just make it even harder to decide... and as you aptly write, time is of the essence...

Thank you so much. I wish you the very best from the bottom of my heart. Thanks for responding, and so soon.

Warmly,
Kata

Clinical trials

Thank you very much for your kind words. T-Cell Lymphomas are so rare, so aggressive, and so difficult to treat, that I try to reposnd quickly when I see another case. My doctor is Dr. Andrei Shustov at Seattle Cancer Care Alliance, which is the treatment arm of Fred Hutchinson. In conjunction with his peers, he formulated the regimen that, against odds, placed me initially in full response. Not completely unexpected was that some cells survived, demonstrating that the variety I had was highly resistant to all chemotherapy. He also researched and offered me the clinical trial in which I yet participate in the long-term study. Your doctor could certainly consult with him regarding your husband's options as, with all T-Cell Lymphomas, a second opinion on both diagnosis and treatment is a very good idea. I rather doubt that Health Canada would pay for any portion of US treatment. Are there any clinical trials for AITL (or any T-Cell Lymphoma) in Canada? It is good to have a plan B in reserve, as the cancer journey seems to include a lot of deference to secondary plans. What I am wondering about is if a clinical trial in which the medication (or perhaps even a greater portion of treatment cost) might be borne by the sponsoring drug manufacturer. Since T-Cell patient groups are always small in number, this might be something that could be worked out, if worse actually came to worse. You might give HC a call or email and inquire as to the coverage they offer, if any, at say, a clinical trial in the states. If they absolutely will not, then you may scour Canada for options.

I am beginning to think that a transplant at first remission might be the way to go, as age is a rather large factor should it rear its ugly head again in say, 5 years. 3% mortality must be balanced against 100% mortality if it relaspses and will not be stopped. Reality is so incedibly difficult to contend with. Once the diagnosis is received the entire world changes. Our life is 100% at risk, no matter what we choose to do, or not to do. A simple infection at any point during my chemo would have meant the end for me - yet no such infection arrived. My entire journey has been a shining example of providence, actually. There is no natural explanation for the number and sequence of events that have lead to me being here. All the best.

Still, doctor has told me that recent data conclude that those of us in long-term remission on novel therapies receive the same benefit as transplant patients, yet without the risks associatied with transplants. Since the only type of transplant I have as an option will not cure me, this is quite a blessing.

Jim 

illead

Kata said:

Thank you so much, Bill and Becky,

many thanks for your kind response. Yesterday our specialist told us that the ONLY t-cell lymphoma to have been proven to respond well to the auto stem-cell tr. is mantle-cell lymphoma. That might be a welcome news for Bill. Hope he will be in remission for many more happy years! We wish you all the very best... thank you so much for your response!

Kata

Hi Kata

Thank you too so much for your response.  Yes, think the SCT is best after the "relapse" (let's hope not, even tho we know the statistics).  We are thinking you are going to get good news.  What we do is just live each day as we did before the diagnosis.  We live in reality but there is time for dealing with that in its proper time, until then we just live life as though it never happened.  Of course we are very blessed that Bill is a very healthy strong man and he is feeling great right now, we do hope and pray for the same with you.  If you are up to it please let us all know what the Pet scan results are.  Don't fear, we know it will be good.  Our thoughts Bill and Becky 

Kata

po18guy said:

Clinical trials

Thank you very much for your kind words. T-Cell Lymphomas are so rare, so aggressive, and so difficult to treat, that I try to reposnd quickly when I see another case. My doctor is Dr. Andrei Shustov at Seattle Cancer Care Alliance, which is the treatment arm of Fred Hutchinson. In conjunction with his peers, he formulated the regimen that, against odds, placed me initially in full response. Not completely unexpected was that some cells survived, demonstrating that the variety I had was highly resistant to all chemotherapy. He also researched and offered me the clinical trial in which I yet participate in the long-term study. Your doctor could certainly consult with him regarding your husband's options as, with all T-Cell Lymphomas, a second opinion on both diagnosis and treatment is a very good idea. I rather doubt that Health Canada would pay for any portion of US treatment. Are there any clinical trials for AITL (or any T-Cell Lymphoma) in Canada? It is good to have a plan B in reserve, as the cancer journey seems to include a lot of deference to secondary plans. What I am wondering about is if a clinical trial in which the medication (or perhaps even a greater portion of treatment cost) might be borne by the sponsoring drug manufacturer. Since T-Cell patient groups are always small in number, this might be something that could be worked out, if worse actually came to worse. You might give HC a call or email and inquire as to the coverage they offer, if any, at say, a clinical trial in the states. If they absolutely will not, then you may scour Canada for options.

I am beginning to think that a transplant at first remission might be the way to go, as age is a rather large factor should it rear its ugly head again in say, 5 years. 3% mortality must be balanced against 100% mortality if it relaspses and will not be stopped. Reality is so incedibly difficult to contend with. Once the diagnosis is received the entire world changes. Our life is 100% at risk, no matter what we choose to do, or not to do. A simple infection at any point during my chemo would have meant the end for me - yet no such infection arrived. My entire journey has been a shining example of providence, actually. There is no natural explanation for the number and sequence of events that have lead to me being here. All the best.

Still, doctor has told me that recent data conclude that those of us in long-term remission on novel therapies receive the same benefit as transplant patients, yet without the risks associatied with transplants. Since the only type of transplant I have as an option will not cure me, this is quite a blessing.

Jim 

Thank you, Jim

Hi Jim,

Thank you very much for the information. We're truly at a crossroads. While one renowned physician tried to dissauade my husband from the auto sct, the doctor we saw this morning said that he looked like a good candidate, looking good, relatively healthy for his age. In fact three people we saw reiterated this claim which was reassuring. What we have decided was to try to go ahead with the actual harvesting of the stem cells at first (it may happen they cannot harvest enough and then the option is off, anyhow). And then we still have a little window to think whether we would go ahead with it... they were reassuring at the hospital while also admitted the 3 per cent mortality rate... A huge decision indeed. Trouble is that we cannot ask our hematologist in town to call Fred Hutchinson as she had already consulted with another centre earlier. We may try, though, but it is a bit complex as we do not want her to feel that we are not placing our trust in her opinion... but we would like to get more information. Wonder if one could call your doctor long-distance for a paid consultation and how much it would cost. I might make inquiries later...
My husband and I have decided to take a small break and therefore I won't be by the computer most of the time but will get back to you afterwards. Thank you so much again. I cannot express my gratitude enough, and also our sincerest well wishes for a long and healthy life for you.

Kata

Kata

illead said:

Hi Kata

Thank you too so much for your response.  Yes, think the SCT is best after the "relapse" (let's hope not, even tho we know the statistics).  We are thinking you are going to get good news.  What we do is just live each day as we did before the diagnosis.  We live in reality but there is time for dealing with that in its proper time, until then we just live life as though it never happened.  Of course we are very blessed that Bill is a very healthy strong man and he is feeling great right now, we do hope and pray for the same with you.  If you are up to it please let us all know what the Pet scan results are.  Don't fear, we know it will be good.  Our thoughts Bill and Becky 

PET scan result, with thanks

Hi dear friends, Becky, Bill and Jim,

I am happy to hear that my husband's just received the result of the PET scan result--all clear! Full remission, for now. That IS wonderful news. We are, however, much aware that this type of T-cell lymphooma, AITL, does often return within a relatively short time. That is why the stem cell transplant team is encouraging him to get the auto transplant. We shall have lots to decide... for now, while I won't be online for a little while coming, if you could let me know why you are saying that stem-cell transplant is better after a relapse, I'd appreciate... it is of utmost importance to know... the trouble is getting to full remission again after relapse, as the stem-cell doctor told us today that it was harder to achieve afterwards...
At the same time, wishing you and Bill a clean BILL of health for a long long time!
Kata

illead

Kata said:

PET scan result, with thanks

Hi dear friends, Becky, Bill and Jim,

I am happy to hear that my husband's just received the result of the PET scan result--all clear! Full remission, for now. That IS wonderful news. We are, however, much aware that this type of T-cell lymphooma, AITL, does often return within a relatively short time. That is why the stem cell transplant team is encouraging him to get the auto transplant. We shall have lots to decide... for now, while I won't be online for a little while coming, if you could let me know why you are saying that stem-cell transplant is better after a relapse, I'd appreciate... it is of utmost importance to know... the trouble is getting to full remission again after relapse, as the stem-cell doctor told us today that it was harder to achieve afterwards...
At the same time, wishing you and Bill a clean BILL of health for a long long time!
Kata

I perhaps misspoke

Hi Kata,

     I may have misspoke about the relapse thing.  Mcl is not a T-cell lymphoma, so you are probably in a whole different ballgame.  Bill was at stage 4 when diagnosed and in no position for a SCT.  In Mcl "after relapse SCT" is also an option. Mcl is still a guessing game.  I do not know anything about AITL, I was only answering about our thoughts for MCL and how we came about our decision.  Sorry if I came off sounding like I was not suggesting it in my prior post.  When I reread it I can see where it may have sounded that way.  If you can find any doctor names who have made a study of AITL, you might try emailing them as we did.  We were very brief with our emails and they answered right back.  Please do not let what I said even become part of your equation.  Another thing with Bill is that the chemo he was given had recently come off of clinical trials and his recovery was remarkable.  So the jury is still out about Mcl and we are just trying to make the right decisions based on what is still somewhat of a mystery.  Your husband's doctors, I am sure, are very knowledgable.   We wish you both the best also, it's a monster isn't it?  We hope this clears things up and our prayer is that the researchers are finding answers and that the doctors are making the right calls.  It's the best we can hope for.  Our thoughts are with you and thank you so much for yours.  Bill and Becky

Gavin NZ

AITL

Hi

 

My understanding is that an autologus stem cell transplant while in remission after first line treatment is more advantagous than waiting for that treatment following relapse.

I became ill while on return home following a 3 week treking holiday in Nepal in April 2012. Not unexpectedly I and medical personnel all initially assumed that I had contracted a tropical disease and initial tests were directed in that area. Finally in early June 2012 AITL was diagnosed. I underwent a six course treatment of CHOP and achieved remission. A auto stem cell transplant was suggested but due to my age (66 years) it was necessary to be approved by higher medical authorities. Finally after exhaustive tests designed to determine my ability to cope I underwent the procedure culminating with the re-introduction of stem cells in late January 2013.

I can say that I have coped extremely well with all procedures to date suffering basically no nausea though much fatigue in the early days. All the procedures and effects were far less in my case than the rather worst case scenarios outlined.

The agressive nature of AITL and the high relapse rate remain a challenge however I am endeavouring to remain positive and supporting that with daily exercise of at least an hour at either the gym or cycling or walking.

I do not believe that a further sct will be available though my local hospital is participating in some clinilal trials if that is considered appropiate.

Carpe Diem

Gavin

illead

Gavin NZ said:

AITL

Hi

 

My understanding is that an autologus stem cell transplant while in remission after first line treatment is more advantagous than waiting for that treatment following relapse.

I became ill while on return home following a 3 week treking holiday in Nepal in April 2012. Not unexpectedly I and medical personnel all initially assumed that I had contracted a tropical disease and initial tests were directed in that area. Finally in early June 2012 AITL was diagnosed. I underwent a six course treatment of CHOP and achieved remission. A auto stem cell transplant was suggested but due to my age (66 years) it was necessary to be approved by higher medical authorities. Finally after exhaustive tests designed to determine my ability to cope I underwent the procedure culminating with the re-introduction of stem cells in late January 2013.

I can say that I have coped extremely well with all procedures to date suffering basically no nausea though much fatigue in the early days. All the procedures and effects were far less in my case than the rather worst case scenarios outlined.

The agressive nature of AITL and the high relapse rate remain a challenge however I am endeavouring to remain positive and supporting that with daily exercise of at least an hour at either the gym or cycling or walking.

I do not believe that a further sct will be available though my local hospital is participating in some clinilal trials if that is considered appropiate.

Carpe Diem

Gavin

Hi Gavin

It is good to hear such good news.  You sound like a very healthy man as is Bill so it is good to know that you were able to get past the SCT in a reasonable manner.  With Bill's MCL they are now saying that if he remains in remission for a long enough period they can use his initial chemo drugs again.  That is a big step forward for MCL, so we hope that happens.  Well I guess we should say doesn't happen, hoping he doesn't go into relapse.  He is still feeling better than he has in a few years, so his onc hasn't even suggested a SCT (of course, he knows that we opted out before).  On Bill's next visit we will ask him his thoughts on it.  Trekking through Nepal sounds so exotic but of course, it looks like you are in New Zealand so you are a little closer than we are.  I sure hope Kata's husband is doing okay.  

Our best to you and hope there is more trekking for your future, stay healthy, B&B

po18guy

Strange symptoms

At the start of July, 2013, my series of CT scans revealed several slightly enlarged nodes in my abdomen. This was a caution flag, since those nodes had always been normally sized in prior scans. Simultaneously, I began to experience several odd symptoms. They included swelling in hands and feet, joint pain in wrists and elbows, a rash over much of my body, excess fatigue, anemia, a persistent dry cough, shortness of breath, poor appetite and others. After running the gamut of medical specialists, each of which was perplexed, my wife happened upon an article just written by my own doctor. In it, he identifies the unique symptoms that are associated with AngioImmunoblastic T-Cell Lymphoma, which is basically what I have. When I read that article, I sensed immediately that a relspse was occurring. Doctor had been thinking the same and so scheduled me for what may be an unprecedented "re-induction" therapy of Romidepsin in three monthly infusions. Basically, we are beginning over on the same schedule that I received when starting the clinical trial in 2009.

Now, T-Cell Lymphomas are known to defeat the various chemotherapy drugs that are used against them, rendering those drugs ineffective in case of a relapse. However, Romidepsin is not a chemo drug and works in a completely different manner. When used against indolent, or slow growing skin (cutaneous) T-Cell Lymphomas, it often places them in remission. Once treatment is discontinued, the cancer tends to return. If Romidepsin is used once again, the cancer goes back into hiding. If this same thing will happen with an aggressive, systemic T-Cell Lymphoma remains to be seen. So far, it does seem to be working, at least in my case. And, for that I am very grateful. Time will tell if it decides to go away again. We shall know in another month or so.

Here is the article:  http://tcllfoundation.org/angioimmunoblastic-t-cell-lymphoma/ 

Max Former Hodgkins Stage 3

po18guy said:

Strange symptoms

At the start of July, 2013, my series of CT scans revealed several slightly enlarged nodes in my abdomen. This was a caution flag, since those nodes had always been normally sized in prior scans. Simultaneously, I began to experience several odd symptoms. They included swelling in hands and feet, joint pain in wrists and elbows, a rash over much of my body, excess fatigue, anemia, a persistent dry cough, shortness of breath, poor appetite and others. After running the gamut of medical specialists, each of which was perplexed, my wife happened upon an article just written by my own doctor. In it, he identifies the unique symptoms that are associated with AngioImmunoblastic T-Cell Lymphoma, which is basically what I have. When I read that article, I sensed immediately that a relspse was occurring. Doctor had been thinking the same and so scheduled me for what may be an unprecedented "re-induction" therapy of Romidepsin in three monthly infusions. Basically, we are beginning over on the same schedule that I received when starting the clinical trial in 2009.

Now, T-Cell Lymphomas are known to defeat the various chemotherapy drugs that are used against them, rendering those drugs ineffective in case of a relapse. However, Romidepsin is not a chemo drug and works in a completely different manner. When used against indolent, or slow growing skin (cutaneous) T-Cell Lymphomas, it often places them in remission. Once treatment is discontinued, the cancer tends to return. If Romidepsin is used once again, the cancer goes back into hiding. If this same thing will happen with an aggressive, systemic T-Cell Lymphoma remains to be seen. So far, it does seem to be working, at least in my case. And, for that I am very grateful. Time will tell if it decides to go away again. We shall know in another month or so.

Here is the article:  http://tcllfoundation.org/angioimmunoblastic-t-cell-lymphoma/ 

Decision ?

Does anyone know what treatment course Kata and her husband took ? Her last post here was many months ago.   I hope we hear good news from them soon. 

My layman's view has always been that if SCT or a lesser second-line therapy are available, and IF the statistical outcomes are approximately the same, to choose the non-SCT second-line therapy first.  I know there are cogent arguments in both directions regarding this.  Just my feeling at the moment, until perhaps better long-term studies are completed.

max

Rocquie

po18guy said:

Strange symptoms

At the start of July, 2013, my series of CT scans revealed several slightly enlarged nodes in my abdomen. This was a caution flag, since those nodes had always been normally sized in prior scans. Simultaneously, I began to experience several odd symptoms. They included swelling in hands and feet, joint pain in wrists and elbows, a rash over much of my body, excess fatigue, anemia, a persistent dry cough, shortness of breath, poor appetite and others. After running the gamut of medical specialists, each of which was perplexed, my wife happened upon an article just written by my own doctor. In it, he identifies the unique symptoms that are associated with AngioImmunoblastic T-Cell Lymphoma, which is basically what I have. When I read that article, I sensed immediately that a relspse was occurring. Doctor had been thinking the same and so scheduled me for what may be an unprecedented "re-induction" therapy of Romidepsin in three monthly infusions. Basically, we are beginning over on the same schedule that I received when starting the clinical trial in 2009.

Now, T-Cell Lymphomas are known to defeat the various chemotherapy drugs that are used against them, rendering those drugs ineffective in case of a relapse. However, Romidepsin is not a chemo drug and works in a completely different manner. When used against indolent, or slow growing skin (cutaneous) T-Cell Lymphomas, it often places them in remission. Once treatment is discontinued, the cancer tends to return. If Romidepsin is used once again, the cancer goes back into hiding. If this same thing will happen with an aggressive, systemic T-Cell Lymphoma remains to be seen. So far, it does seem to be working, at least in my case. And, for that I am very grateful. Time will tell if it decides to go away again. We shall know in another month or so.

Here is the article:  http://tcllfoundation.org/angioimmunoblastic-t-cell-lymphoma/ 

po18guy

Jim, I'm so sorry to hear about your relapse. Arrrgh, such an awful and scary word! It sounds like you have an excellent doctor and that you, yourself have done a lot of research about your own lymphoma. Since you feel so positive about the Romidepsin working again, I feel more hopeful too. Do keep us posted, OK? We care about you and for you.

(((Hugs)))

Rocquie

 

anliperez915

po18guy said:

Strange symptoms

At the start of July, 2013, my series of CT scans revealed several slightly enlarged nodes in my abdomen. This was a caution flag, since those nodes had always been normally sized in prior scans. Simultaneously, I began to experience several odd symptoms. They included swelling in hands and feet, joint pain in wrists and elbows, a rash over much of my body, excess fatigue, anemia, a persistent dry cough, shortness of breath, poor appetite and others. After running the gamut of medical specialists, each of which was perplexed, my wife happened upon an article just written by my own doctor. In it, he identifies the unique symptoms that are associated with AngioImmunoblastic T-Cell Lymphoma, which is basically what I have. When I read that article, I sensed immediately that a relspse was occurring. Doctor had been thinking the same and so scheduled me for what may be an unprecedented "re-induction" therapy of Romidepsin in three monthly infusions. Basically, we are beginning over on the same schedule that I received when starting the clinical trial in 2009.

Now, T-Cell Lymphomas are known to defeat the various chemotherapy drugs that are used against them, rendering those drugs ineffective in case of a relapse. However, Romidepsin is not a chemo drug and works in a completely different manner. When used against indolent, or slow growing skin (cutaneous) T-Cell Lymphomas, it often places them in remission. Once treatment is discontinued, the cancer tends to return. If Romidepsin is used once again, the cancer goes back into hiding. If this same thing will happen with an aggressive, systemic T-Cell Lymphoma remains to be seen. So far, it does seem to be working, at least in my case. And, for that I am very grateful. Time will tell if it decides to go away again. We shall know in another month or so.

Here is the article:  http://tcllfoundation.org/angioimmunoblastic-t-cell-lymphoma/ 

Jim

Jim,

I will be praying for you! Hope the treatments work and you go back into remission. Take care

Sincerely,

Liz

 

po18guy

anliperez915 said:

Jim

Jim,

I will be praying for you! Hope the treatments work and you go back into remission. Take care

Sincerely,

Liz

 

Good news so far

As it turns out, AngioImmunoblastic T-Cell Lymphoma is unique in that it causes what is basically an auto-immune disease to occur in your body. Paradoxically, it eploits a weakened immune system, causing it to over-react and begin to attack the body's own tissues. Often, the blood is involved, either the red cells (Auto Immune Hemolytic Anemia) as in my case, or the platelets (Auto Immune Thrombocytopenia) being destroyed. This action also causes the swelling, cough, shortness of breath, rash, joint pain and various other odd symptoms that will stump medical specialists, guaranteed.

Since resuming full dosing of Romidepsin, all of the symptoms have either gone or lessened considerably. Still just a bit of swelling and a bit of wrist pain. The rest, thankfully, is gone. Doctor says this is all a good sign that the increased treatment is working. I had been on an experimental reduced dosage as a maintenance therapy, but it now appears that I need more than a single monthly treatment. At this point, doctor is watching the disease's response and feels confident that, once the cancer is forced back into hiding, treatment can be backed off a bit once again.

So, the news is still good so far. Another round of treatments and a scan in a month or so will tell. Thank you all for your prayers and welll wishes!  

Rocquie

po18guy said:

Good news so far

As it turns out, AngioImmunoblastic T-Cell Lymphoma is unique in that it causes what is basically an auto-immune disease to occur in your body. Paradoxically, it eploits a weakened immune system, causing it to over-react and begin to attack the body's own tissues. Often, the blood is involved, either the red cells (Auto Immune Hemolytic Anemia) as in my case, or the platelets (Auto Immune Thrombocytopenia) being destroyed. This action also causes the swelling, cough, shortness of breath, rash, joint pain and various other odd symptoms that will stump medical specialists, guaranteed.

Since resuming full dosing of Romidepsin, all of the symptoms have either gone or lessened considerably. Still just a bit of swelling and a bit of wrist pain. The rest, thankfully, is gone. Doctor says this is all a good sign that the increased treatment is working. I had been on an experimental reduced dosage as a maintenance therapy, but it now appears that I need more than a single monthly treatment. At this point, doctor is watching the disease's response and feels confident that, once the cancer is forced back into hiding, treatment can be backed off a bit once again.

So, the news is still good so far. Another round of treatments and a scan in a month or so will tell. Thank you all for your prayers and welll wishes!  

Fantastic

What great news, Jim. Aren't we happy to live in a time of modern medicine and medical discovery? I'm so thankful for our doctors and researchers and I know you are. Let us know about your new scan?

(((Hugs)))

Rocquie

 

illead

Hi Max

I just wanted to answer your question about an SCT.  When Bill was facing one I had remembered a doctor's name from the Univ of Wis.  He did a lot of work with MCL.  Also the names of a couple doctors in Germany who were also working with MCL and Bendamustine.  He was already in remission and feeling great so we were having a tough time making a decision.  He emailed the 3 doctors and they amazingly emailed back and they all said that they would not suggest it.  We didn't question them further because it was our feeling also.  I am not  saying it was the correct decision but it was just one of those things that seemed right to us and for Bill's circumstances.  Just my thoughts, I'm not trying to dissuade anyone.  Becky

Max Former Hodgkins Stage 3

illead said:

Hi Max

I just wanted to answer your question about an SCT.  When Bill was facing one I had remembered a doctor's name from the Univ of Wis.  He did a lot of work with MCL.  Also the names of a couple doctors in Germany who were also working with MCL and Bendamustine.  He was already in remission and feeling great so we were having a tough time making a decision.  He emailed the 3 doctors and they amazingly emailed back and they all said that they would not suggest it.  We didn't question them further because it was our feeling also.  I am not  saying it was the correct decision but it was just one of those things that seemed right to us and for Bill's circumstances.  Just my thoughts, I'm not trying to dissuade anyone.  Becky

Thanks

Thank you, Becky.  Impressive, that all three doctors whom you wrote to agreed with this.   A sort of motto in the submarine service is "always have a backup system."

Like you, I realize that many cases to do not allow for a choice, but require immediate SCT prep.  Our discussion addresses only thoses cases where there is a reasonable option, with similiar outcomes in the most recent studies.  I have also read that MCL is an odd bird, which can at times manifest as indolent, and at other times manifest as aggressive.  My own cancer is odd also, and has at times in the past been considered HL, and then more like NHL, but now is mostly treated as HL again.  This muddies the water quite a bit.  The rarer subtypes have had fewer studies, and less focus for salvage therapies in general.

As I stated before, I do not view oncologists as opportuists or money-chasers, but when a doctor gets highly specialized and focused (as with SC Transplantation), they may be less ready to consider less radical approaches.

max

.

illead

Max Former Hodgkins Stage 3 said:

Thanks

Thank you, Becky.  Impressive, that all three doctors whom you wrote to agreed with this.   A sort of motto in the submarine service is "always have a backup system."

Like you, I realize that many cases to do not allow for a choice, but require immediate SCT prep.  Our discussion addresses only thoses cases where there is a reasonable option, with similiar outcomes in the most recent studies.  I have also read that MCL is an odd bird, which can at times manifest as indolent, and at other times manifest as aggressive.  My own cancer is odd also, and has at times in the past been considered HL, and then more like NHL, but now is mostly treated as HL again.  This muddies the water quite a bit.  The rarer subtypes have had fewer studies, and less focus for salvage therapies in general.

As I stated before, I do not view oncologists as opportuists or money-chasers, but when a doctor gets highly specialized and focused (as with SC Transplantation), they may be less ready to consider less radical approaches.

max

.

You are right

We agree totally Max.  Especially when there are so many unknowns with MCL.  You are right about MCL being one and acting like the other.  When we were thinking about an SCT, we were set to go to a hospital on the east coast with a very dedicated doctor but they were "out of network" for our ins.  The next place we tried was a very prestigious hospital but the doctor's attitude seemed to us that he was most interested in putting another notch in his belt.  That's what got us thinking that we should delve a little further.  BTW, it was none of the hospitals that our friends here are in, and I have no doubt they and their doctors have made the right choice.  But like you said, with a rare lymphoma that is pretty new on the scene it led us to seek the opinions of those who are specializing in it.   One of the questions Bill wrote too, was if there was anything more they had in Germany that the docs were not using here and he emailed again to tell us that at this time we were using everything they were.  He was so nice and very concerned (they all were).  If Bill ever relapses and nothing seems to work, we'll be on our way to Germany, that's for sure.  One of Bill's oncs told us that Germany is one of the biggest researchers of lymphoma in the world and they have one of the fewest percentages of the disease there.  he raved about their dedication.  Becky