ANGIOIMMUNOBLASTIC T-CELL LYMPHOMA (AITL) -- have to make a serious decision regarding autologous st
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Deutschlandillead said: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
I know Germany initiated some of the lymphoma combos currently in use. I did not know that Germany's lymphoma rate was lower, however. I ate a plate of sauerkraut the other night at an Oktoberfest -- maybe that will help ! My own ancestry is Czech Republic, which is on the German southeast border.
Oddly enough, Hungary is also a country where many of the best long-term lymphoma studies have been conducted. How that came about I am not sure.
max
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German reserch was used toDeutschland
I know Germany initiated some of the lymphoma combos currently in use. I did not know that Germany's lymphoma rate was lower, however. I ate a plate of sauerkraut the other night at an Oktoberfest -- maybe that will help ! My own ancestry is Czech Republic, which is on the German southeast border.
Oddly enough, Hungary is also a country where many of the best long-term lymphoma studies have been conducted. How that came about I am not sure.
max
German reserch was used to determine my induction therapy. In Germany, most, if not all patients are moved into clinical trials by the government system. Thus, they have a very high participation rate and much data is gathered. Hungary may have a similar system.
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Thank you for giving me HOPE!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.
My husband was just recently diagnosed with Angioimmunoblastic T-Cell NHL Stage 3. He has just had one infusion of CHOP (on October 4th). His next infusion is October 28th. I have SO much to learn! I have not even finished reading this thread...
Thank you.
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Kata?
hi,
im having the same dilemma now with my 66 year old father. Did u go without the transplant? How ia he doing now? Hope to hear from you.
lorrie
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Decision?
hi,
im here facing the same dilemma as Kata. Wondering what decision she and her husband made? Does anyone know of a long term AITL survivor who didnt undergo stem cell transplant? thank you.
Lorrie
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Lorriexoxo said:
Decision?
hi,
im here facing the same dilemma as Kata. Wondering what decision she and her husband made? Does anyone know of a long term AITL survivor who didnt undergo stem cell transplant? thank you.
Lorrie
Lorrie,
It appears Kata last wrote in 2013. Many patients or their souses participate briefly and then cease to write, for reasons known only to themselves. T-cell disease is in most cases very aggressive and is best treated by an oncologist with focus on T-cell disease. Most lymphomas are "B-cell" derived, and the B-cell experience is not always analogous to what a t-cell patient needs to know. Lack of response does not indicate indiffirence, however.
I would recommend that you verify that your father's oncologist has substantial t-cell experience him or herself. If not, I would seek second opinions from oncologists who do have such experience. But, just from memory, I do not recall a t-cell patient who did NOT utilize SCT; it seems to be the norm, insofar as there is a norm.
Probably our most experienced t-cell survivor is po18guy, who wrote several responses above. You can use the CNS email feature to try to reach him (or anyone else on these Boards) privately if you are so inclined. I believe I read where he stated that he now runs a specialty Blog regarding t-cell disease. If you click on his name, his Personal Information section might contain a link to his Blog (I am not sure).
Bless your research, amd bless your dad,
max
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Everything depends...Lorriexoxo said:Decision?
hi,
im here facing the same dilemma as Kata. Wondering what decision she and her husband made? Does anyone know of a long term AITL survivor who didnt undergo stem cell transplant? thank you.
Lorrie
Lorrie, if you are not seeing a T-Cell specialist, I strongly urge you to consult with one. I have zero doubt that I would not be here had I not consulted with a T-Cell specialist. If you are in the US, you can find various T-Cell specialists here: http://www.tcllfoundation.org/resources-and-support/treatment-centers
That is not an exhasutive list, but there are some of the shining stars of the T-Cell world there. That foundation (http://www.tcllfoundation.org/) was created to assist patients with T-Cell Leukemias and Lymphomas.
As to "curability" it depends upon the stage at which the disease was first treated. Stage I & II are the most curable by autologus transplants/chemo and/or radiation. Even then, the disease may relapse from within a few weeks to two years later. And, if the disease has been treated prior and has then relapsed, it probably will not be cured or placed in long-term remission by an autologous transplant.
An autologous transplant is tougher going into and easier coming out of, than an allogenaeic (donor) transplant. An autologous transplant basically re-boots one's immune system, but that leaves open the possibility that the same weakness that allowed the disease in the first place will reappear. The plus is that there is no Graft-versus-Host Disease (GvHD).
Generally, an allogeneic tranplant is easier going in and harder coming out. It is more likely to produce a long-term remission, but most likely will also bring some GvHD with it. It is a tradeoff with no guarantees. Another alternative is to participate in a clinical trial. I have been in two of them and one produced 4 1/2 years of full response. The second one had to fight two varieties of lymphoma and that was too much to ask.
I had seven years into the fight against PTCL-NOS --> AITL, but the transplant became the only reasonabnle option after it mutated into two varieties. I do not have a blog, but am involved in a transplant forum at www.cancerforums.net
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Romidepsin trial
Hi po18guy,
I was also in the Romidepsin trial managed by Dr Shustov from 2009 until 2012. I was diagnosed with AITL in 2008 in stage 4. I went through a year of chemo that didn't work on me. I was also rejected from the transplant program because I could not sustain remission. However, I went into remission almost immediately after entering the trial, and I am still in remission 8 years later. I don't know why Romidepsin worked so well on me. I have had no further treatment. I wonder if you are the person that Dr Shustov so often mentioned to me.
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T-Cell trialsldm2009 said:Romidepsin trial
Hi po18guy,
I was also in the Romidepsin trial managed by Dr Shustov from 2009 until 2012. I was diagnosed with AITL in 2008 in stage 4. I went through a year of chemo that didn't work on me. I was also rejected from the transplant program because I could not sustain remission. However, I went into remission almost immediately after entering the trial, and I am still in remission 8 years later. I don't know why Romidepsin worked so well on me. I have had no further treatment. I wonder if you are the person that Dr Shustov so often mentioned to me.
Maybeeeeee... I did receive Romidepsin/Istodax for 64 cycles, about 5 years total. There was/is a man in France who had been on it longer, but I am satisfied with my #2 spot! I know of another fellow who has received 51 cycles, so it certainly has its application. The second relapse was Romidepsin's undoing, as the lymphoma mutated into two sub-types (PTCL-NOS as well as AITL). We could get only one of them to respond to Romi (and three other drugs in succession), and three scans in a row showed progression. As a testimony to the great benefits of clinical trials, a trial regimen called TREC eradicated two dozen tumors and small intestine involvement in just two infusions - a miracle if ever there was one. Dr. "I don't need any stinking clinical trial" Shustov 'simply' admnstered the drug combo outside of the trial. Part of what makes him a great hemaologist is his willingness to justify such outside the box thinking.
I went immediately into an allo transplant and now I am striving to survive the cure. Dr. Shustov recently told me that there is a now a better regimen than TREC, but I failed to get the details. I will see him at a lymphoma workshop November 11th in Seattle and I plan to ask him about it. Also, there are now four identified sub-types of AITL, based on genomic profiling. This is the beginning of personalized treatment for a category of malignancies for which there is still no standard regimen. Lots of hope there. As to TREC, it comes in two forms, depending upon which type of Lymphoma you have. It is:
Treanda (Bendamustine), Rituxan (omitted in T-Cell cases), Etoposide and Carboplatin. None of these drugs is new, but their combination is. And that is where progress is being made - the combining of well-known, approved drugs. Are you close enough to attend the Seattle workshop? If so, I would love to bore you to sleep - or better yet, hear your story of success.
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Lymphoma conference
Thats a great idea! I will try to get off work that day. I have long suspected that there must be some variations of the disease or some difference in the genetic makeup of patients. Not all of us responded in the same way to treatment.
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stem cell storage
PO18 guy,
I actually found you because I was trying to decide whether to continue storing my stem cells. Because of your experience with relapse, I have decided to continue to store them. Even though I was rejected from the transplant program earlier, it may be possible that I could relapse in the future.
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I have registered
I plan to be there, just to make re-acquaintance with doctor! I have been taken away from him and assigned to the nebulous "long-term follow up" team. Oh, well. Storing your own cells is a form of insurance, but auto transplants are not expected to provide a durable remission once you have relapsed. Sad to say, in the post-relapse setting, an auto transplant may give only 2-12 months of remission. For that reason, an allo transplant is often/usually advised after relapse. However, there may be a single agent drug or a new regimen combining older drugs that may work for individual cases of AITL - based on the genomic profiling results.
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Hello everyone,
I came to this forum after seeing positive comments written by po18guy. You give me hope for my father. My dad was diagnosed in October, 2016. He received chemo for about 6 months and responded well. They did an auto stem cell transplant in early April. Unfortunately, the most recent pet scan shows the cancer has returned. He also has hemolytic anemia, which seems stable for now. The biopsies will be back in a week but his doctor is certain the cancer has returned based on the scans. They are planning to put him on Romidepsin in combination with a new drug currently in clinical trials. I'm not sure of the new drugs they are considering but apparently it will be dependent upon whether he tests positive for a certaine gene. Does anyone have any familiarity with this?
Po18 Guy, you give me great hope. Do you know what the current new drugs are that they are using in conjunction with Romidepsin? Do you know anything about success rate? Thank you all!
Elizabeth
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ebyrne said:
Hello everyone,
I came to this forum after seeing positive comments written by po18guy. You give me hope for my father. My dad was diagnosed in October, 2016. He received chemo for about 6 months and responded well. They did an auto stem cell transplant in early April. Unfortunately, the most recent pet scan shows the cancer has returned. He also has hemolytic anemia, which seems stable for now. The biopsies will be back in a week but his doctor is certain the cancer has returned based on the scans. They are planning to put him on Romidepsin in combination with a new drug currently in clinical trials. I'm not sure of the new drugs they are considering but apparently it will be dependent upon whether he tests positive for a certaine gene. Does anyone have any familiarity with this?
Po18 Guy, you give me great hope. Do you know what the current new drugs are that they are using in conjunction with Romidepsin? Do you know anything about success rate? Thank you all!
Elizabeth
Following up on my prior post, it looks like htey will do Romidepsin and Duvelisib. If anyone has any information on this, I would greatly appreciate it.
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New to me...
Duvelisib is a new inhibitor-class drug, and the current trend is to combine older drugs together into new regimens as well as combining the newer "inhibitor" class drugs into new regimens. They are finding that some combinations have a synergistic effect - in which two drugs will be more effective when combined than they are separately. Some drugs, it is believed, sensitize the tumor cells, making them more vulnerable to the second drug.
As it was in my case, your dad will have to be a trailblazer in this regard. The Romidepsin is not a perfect drug, but worked very well for me for 4 1/2 years. Clinical trial is the way to go, as relapsed T-Cell Lymphomas are a mostly unexplored world. If he is healthy enough, he can undergo an allogeneic transplant, pehaps a haploidentical such as I had.
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Thank you so much for yourpo18guy said:New to me...
Duvelisib is a new inhibitor-class drug, and the current trend is to combine older drugs together into new regimens as well as combining the newer "inhibitor" class drugs into new regimens. They are finding that some combinations have a synergistic effect - in which two drugs will be more effective when combined than they are separately. Some drugs, it is believed, sensitize the tumor cells, making them more vulnerable to the second drug.
As it was in my case, your dad will have to be a trailblazer in this regard. The Romidepsin is not a perfect drug, but worked very well for me for 4 1/2 years. Clinical trial is the way to go, as relapsed T-Cell Lymphomas are a mostly unexplored world. If he is healthy enough, he can undergo an allogeneic transplant, pehaps a haploidentical such as I had.
Thank you so much for your reply po18guy. I really appreciate it.
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Due to dad's age, he would probably be considered for a reduced intensity allo transplant. However, depending on the disease process and doctor's treatment phiuolophy, that may be considered to be a 'last resort' option. Any one of the recently introduced biologic drugs will be far less toxic or risky than a transplant. The aggressiveness of the disease and its response to the drug must be carefully watched as treatment is administered.
Another factor to consider is that there are now four clearly identified sub-types of AITL. They respond differently to different drugs and regimens, thus a T-Cell researcher/specialist is almost absolutely necessary.
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My dad
My dad will be 75 in February. I don't think he could handle another transplant after the auto one failed. He is at Sloan Kettering with Dr. Kumar. I believe she is a t-cell specialist. I'm praying he responds to this next line of treatment. I believe the romidepsin will be combined with one of two drugs depending upon the sub-type. I'm so happy po18guy to hear that you are doing so well. You have no idea how much my family appreciates your responses. We are all praying for you and your continued success.
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You are very kindebyrne said:My dad
My dad will be 75 in February. I don't think he could handle another transplant after the auto one failed. He is at Sloan Kettering with Dr. Kumar. I believe she is a t-cell specialist. I'm praying he responds to this next line of treatment. I believe the romidepsin will be combined with one of two drugs depending upon the sub-type. I'm so happy po18guy to hear that you are doing so well. You have no idea how much my family appreciates your responses. We are all praying for you and your continued success.
Despite what occurs in the future, what we all possess is today. We have our loved ones to spend this precious time with. If we are preoccupied with the future, we risk losing today. I have gone through everything for a reason - a reason which will not be fully comprehended in this life. Thank you very much for your prayers, as they sustain me.
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