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

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.

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

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 

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

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 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

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 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/ 

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

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,

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

Sincerely,

Liz

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!  

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 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

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

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