This a rare disease. But the over time a number of people whose lives are affected by AILT found their way their way to the discussion on the old server. I have been able to forward the best article that I know of about AILT to a number of people who needed it. So I want to thank the moderators for making this discussion board available.
This article can be found at:
If you have trouble with downloading the ".pdf" file, email me and I will send a WORD conversion of the article
Here is the link to my blog. I am working on it, so it is still a little rough, and I have a lot to add.
Just wanted to thank you again for the wealth of information and inspiration you have provided to us with this disease. I can't begin to tell you how much your "old" postings helped me through the early dark days of diagnosis -- they made decisions about treatments so much easier.
Thank you Crankycook. However there simply isn't anything I would call a "wealth" of information about AILT. The best article is now 5 years old. I have posted what is available. I hope to post more information in my blogs as soon as I come to grips with this new board.
In the meantime, let us know about your status.
When I was first diagnosed, docs immediately proposed double R-CHOP followed by auto transplant. Because of the article you had found, I was able to proceed with confidence. Although I achieved remission after a couple of rounds of chemo, I relapsed within 2 months of stopping while I was undergoing harvest conditioning. Won't go into the many complications I then faced, but much to doc's surprise I again achieved remission on just prednisone. Had mini-MUD-allo (very easy) 6 months later in 12/08. Docs at my cancer center are finding it is having about same success rate (if not better) than auto -- but of course it does have the risk of GvHD. It's 4+months (17 months since first symptoms) and so far, so good (fingers crossed,knock on wood).
You are right, though, about the difficulty of finding info -- both because of our disease's rareness and the fact that info is often buried in papers and studies on several kinds of NHL. It takes a lot of digging and reading of technical stuff. There is more recent info (such as success rates with mini-allo), but it is definitely difficult to access since the main topic of the research paper is rarely AILT itself. That's why it's so important for folks with this diagnosis to seek treatment at major cancer centers, where docs have actually seen and treated it and other peripheral T-cell lymphomas before.
Keep up the good work !
I just noticed your comment that you had achieved remission using Prednisone alone. I have a very unusual situation in that I have both T and B cell clonal expansions of lymphocytes in my bone marrow. The T-cell expansion is a good match to Large Granular Lymphocytic Leukemia and the B cell expansion looks like Hairy Cell Leukemia. Presently, my doc says “we’ll call it a lymphoproliferative disorder”. She says it might turn out to be a lymphoma that has migrated to bone marrow. I have no swollen nodes detectable by either palpation or ultrasound. Doc says that CT scan is not warranted at this stage. I agree.
Can you tell me dose and duration of your prednisone treatment? Did your doctors (or you) ever figure out the mechanism for the prednisone induced remission? I am curious because I am presently on prednisone trying to rid myself of secondary fatigue/weakness complications.
You are right about T-cell stuff being very different from B-cell stuff. When I first came to this site, that’s when I only had the T-cell expansion, I had thought that I had come to the wrong spot. Everybody seemed worried about high concentrations of white blood cells in their peripheral blood. I was not. My WBC counts were usually low, my neutrophils had tanked and my red blood cell counts hovered around the 50% mark. On top of that, I’ve had gads of autoimmune issues.
T-folks are definitely in the minority and T-Newbies need to be cautious in comparing notes with the B – people.
Hey there, Joe --
Docs had me on prednisone as part of some new chemo regimen (starting 10 months ago) when I relapsed 2 months after ending R-CHOP (my docs have a gut feeling that some T-cell lymphomas may have a "hidden" B-cell factor that is triggering the T-cells, so they use some B-cell therapies,too). I had also been on some prednisone for a couple of months when I first became ill and it was thought I had allergic vasculitis from a bug bite. They ended the new chemo after one round (that's why I can't remember the name of it) because of tanking counts, but itching came back immediately, so they kept me on the prednisone component of the chemo (100mg!). They didn't remotely think it would lead to remission and they remain baffled (although I have seen some reports of folks achieving long-term remissions with AILT on prednisone or cyclosporin alone). However, the prednisone has done its damage by giving me drug-induced diabetes, a 35 pound weight gain,susceptibility to a massive MRSA infection,muscle weakening and bone thinning. Generally not something you want to stay on long-term if there is an alternative. All the docs know is that my body came out on the other side of the two month battle with MRSA in remission. That's why I had a mini-transplant in December. Docs were convinced it would just be a matter of "when" not "if" I would eventually relapse or get a serious infection (which, of course, could still happen).Got prednisone down to 30mg a few weeks ago and then something started going on with my skin (but biopsies,scans and BMB were normal). Couldn't halt progression of skin issue until back up to 60mg. Am currently at 50mg and holding steady until the next reduction in a couple of weeks.
It is hard to have any cancer, but T-cell presents its own set of challenges because almost every case is different and there really are no tried and true treatments.Statistics are based upon such small samplings that they range from bleak to meaningless. My docs are sort of taking "the kitchen sink" approach -- they're throwing everything in their arsenal at it and seeing what works. Some of the more effective T-cell treatments are too toxic for me, which is also frustrating.
Sounds like you may face a challenge in getting a definitive diagnosis. Looks like leukemia cells but is lymphoma without lymph node involvement? Bone marrow involvement and fatigue? Your counts are not good. What does doc expect to happen next and when? You just might want to give another look at getting a PET/CT scan (I wouldn't bother with a plain CT since nothing is showing on ultrasound) or at least a second opinion. I have a very aggressive lymphoma -- yours may or not be or it might be leukemia . Getting an accurate diagnosis early can make all the difference in the world. It took the pros at Massachusetts General and Dana-Farber ,who had at least seen and treated AILT before , to diagnose me. I had no nodes bigger than 1cm, slightly enlarged spleen, negative BMB, blood counts were fine except for lymphocytes, 3 negative lymph node biopsies, but PET scan lit up "like a Christmas tree". I did present clinically like AILT -- fever, rash, itching.... All auto-immune and infectious causes had already been eliminated, so they did 4th node biopsy and checked LDH -- BINGO !!
As rare as our conditions may be, there is no shortage of wonderful, supportive people here to provide us support and helpful advice,
Cranky, thanks for that information. I also have the feeling that T- and B- cell abnormalities are sometimes waltzing together. I’ve read hints of this in the literature. However, I do not know whether the T or B is the leading partner.
In any case, since my situation is indolent, time is on my side; I don’t need to rush into treatments. I am a wallflower. My doc says that I will get (and have already gotten) red blood cell transfusions for my anemia and that I am to go to hospital (and have done so) whenever I get a fever about 101 F. My other complaint is weakness/fatigue.
I am sorry about your situation. You are definitely fighting a larger battle than I. Like you, I am concerned about the prednisone side effects. I was marginally osteoporotic (Z = -2.6) before I started taking the prednisone and have now resumed taking alendronate to put more bone on my bones. I don’t want to break a hip bone.
>>>There is more recent info (such as success rates with mini-allo), but it is definitely difficult to access since the main topic of the research paper is rarely AILT itself.
Crankycook, could you possibly give a reference to an article about mini-allo for AILT?.
I would like to post a link to it in my blog.
I have written to the board before,, but not for a long time. Two weeks ago I completed 8 rounds of CHOP-R. I appreciate all of the invaluable information you have provided, and I will keep checking into this topic. I'm sure I will have questions as I proceed through this next phase. My oncologist is beginning to discuss Rituxin as a maintenance solution. I want to learn more about that.
My name is Patrick and I am new to the posting, but not to the old site which I have gone back and forth to for the past 2 years to read and see what others diagnosed with AILT have gone thru. I wanted to thank you and the many others who have posted great information and their stories, they have all been informative and inspirational to me.
At 35 I was diagnosed with Stage IV AILT in June 2007 and began treatment July 2007. My treatments to date have been a full regimen of Hyper-CVAD, ICE, BEAM to get me ready for an Autologous Stem Cell Transplant,5 rounds of Oxaliplatin with Gemzar and currently 3 rounds of Dacogen with Valproic Acid. The reason for so many chemo regimens is that I have had short remissions of 1 and 4 months and after the Autologous stem cell transplant I developed GVHD (rare for an Auto transplant) and the lymphoma at one point had spread to my stomach. Miraculously after a few months the GVHD cleared up and after several biopsies and restaging the lymphoma in my stomach disappeared. So for 4 months I was in remission then the AILT came back but not as aggressive and seemed to stay mostly in the neck region, but as I was completing the final restaging and bone marrow biopsies to start an Allogenic transplant it was discovered that I had developed Myelodysplastic Syndrome (MDS) and it would have to be treated first before any thought of the Allogenic transplant could be done. So now I am on the Dacogen with the Valproic Acid to treat the MDS and awaitng word on a possible new donor for the transplant or even the use of cord-blood for the transplant.
I really did not have any questions right now but just wanted to say thanks again for all the information.
I read your story with interest. You have certainly been through the mill and have had quite a trek through cancer treatments.
I have been interested in finding out more about a test called CCDRT. So far I only know what you can read at the links below:
CCDRT, is the acronym for “Cell Culture Drug Resistance Testing”. It is a lab test that supposedly determines which chemo drugs can be most effective against a patient's particular cancer cells. It does this by growing the cancer cells outside of the patient’s body and testing them for effectiveness with a variety of anti-cancer drugs. CCDRT has been around a long time, and apparently the first attempts to use it were not highly successful, so it sort of got a bad name and was put on a back burner. The labs that do this test claim that the present methods have been improved to the point that it is a very valuable test. If it works, as they claim, it would allow finding the best drug outside the body, instead of putting the patient through hell to see what works,
In most cases, I think the doctors choose effective chemo without using CCDRT, But the use of different chemos may have caused your cells to become resistant to many types of anti-cancer drugs. That's why I wonder if CCDRT test may be appropriate for you.
To my (non-doctor) way of thinking, CCDRT just makes too much sense for it to be abandoned without a thorough test. If my doctors had not picked drugs that were successful the first time, I would have demanded this test. I am very cautious about suggesting anything, in the way of cancer treatment, but, the test itself can’t hurt you since it is done outside the body. But it could hurt you in the pocketbook. It costs about $1500 and Medicare pays only some of it and other insurance may not cover it at all. The only danger to the patient would be if the test gives a false indication which leads to using a drug that is ineffective, or causes the patient to get a drug that is too toxic. So it is just something to ask your doctor about.
I think the subject is very interesting, so I am going to post something about this under a heading that is read by more people, I would like to see if anyone has any experience with CCDRT.
Hey Chuck, not sure if you remember me. I posted about my dad on the old site. His cancer is back and they are trying a new treatment called: fludarabine. He was only in remission for 3 months, then the rash started coming back. They kept it at bay with prednisone all this time because his PET scans kept being clear. They finally did a biopsy of the rash and it confirmed the cancer was returning. This week his lymph nodes are swelling terribly and the doctor says we will have to start the fludarabine chemo on Monday. Have you ever heard of this treatment plan and the results?
Yes I remember you, but the old board is no longer available, so I can't refresh my memory about the details of your Dad's experience. But, no, I do not know much about fludarabine. Of course I never advise anyone what to do about treatment; I just tell about my own experience and I have posted a few links to sites of interest to those who have this disease, (or similar diseases).
One of my doctors told me that AILT is easy to get into remission but usually comes back. That is why I went ahead with the autologous stem cell transplant. But not everyone is a candidate for that, and it is awful to go through, and a few don't make it.
I suppose you have seen my blog:http://community.lls.org/people/ChuckLB/blog/2009/04/21/my-ailt-experience
It mentions a few newer treatments that do not use stem cell transplant. You might ask your doctor about them.
Just for your info,
I was diagnosed with AILD in May 2008. After a first prednisone treatment, which did not really work, the haematologist proposed a fludarbine treatment, which according to his experience would be as effective as a CHOP-treatment, but with less side effects (especially: no hair loss). Well, unfortunately, I did experience all the side effectes of fludarabine, but it did little to fight the cancer.
In March 2009 I started a CHOP-treatment, lost most of my hair, and suffered a lot of other side effects, but in the end I did feel better. I'm in partial remission since June 2009, with ups and downs and my hair has come back, curly and denser than before (long live chemo!). In the mean time I'm taking low doses of DCA, without doctor's prescription, and I have the impression it helps, a little bit.
My haematologist tells me that the next step to consider would be autologous stem cell transplantation.
FYI. My wife of 43 years, Susan Young, passed away on August 25, 2009 from angioimmunoblastic T-cell lymphoma at the U of M hospital in Ann Arbor, MI. She had just turned 62. She was faith filled and brave to the end. She now lives with the angels and saints in Heaven. She was ill for approximately 2 and 1/2 years
Patrick H. Young
I am always distressed to hear when someone dies of this disease. I sympathize with you on your loss of Susan.
I have read her blog at http://www.animalhousewife.com/?cat=9
I did not have a good feeling when she said her doctor was using CHOP-R. I remember my doctor double checking my prescription to be sure it was for plain CHOP and not CHOP-R. But I am not one to argure with her doctor who must know more than I. So I did not dispute him. That might have just upset her. However, the R (for rituxin or Rituximab) is said to be useful only in cases of B cell diseases. (AILT is a T-cell disease). Here is what Wikipedia has to say about CHOP-R
Of course, the addition of rituxin probably did not hurt, but from what I know, rituxin would not help or be useful for maintenance with AILT. However her doctor may have had good reasons for what he did. (Reasons I just don't know about.)
And, we will never know if a stem cell transplant would have helped her.
Thanks for your reply. That blog that you mentioned was not my wife Susan's; I'm not sure who it belonged to. My wife Susan's ChopR treatment lasted approximately six weeks. On June 26, 2009, she received a clean bill of health with a clean PET scan. Three weeks later, all her symptoms returned. The chemo has damaged her heart. She died at U of M hospital in Ann Arbor after a two week stay there. They tried Thalidomide as a last ditch effort/. She died of congestive heart failure and AILT. Susan and I were married for 43 years. She had just celebrated her 62nd birthday. Our four children, son-in law, daughter-n-law and three granddaughters were all there holding her hand as she went home to God. She was extremely brave. My God we miss her!
Sorry about the confusion. That was "Sue's" blog, not your wife's
The chemo has damaged her heart.
That may be the case, but AILT also damages soft muscle tissue. I incurred a slight damage to one of my vocal chords which could have been caused by the disease, or the chemo. Nobody seems sure.
Thanks for the responose. They have my dad on the following chemo drugs: Carboplatin, Infosfamide, and Etoposide. Not sure if you have heard of these combination to treat AILT? As I mentioned in my last email, he had CHOP October 2008 - Jan 2009. He was in remission until March of this year (2010), so one year in remission. His blood work and PET scans came by clean for the last year. Then the chills and fevers started again, and all of the sudden - blood work he did just 3 weeks before March were great, so a big shock how this came back so fast. Let me know if you have heard of this type of treatment following relapse? Take care
Approximately 1 month after completing Hyper-CVAD, I had a relapse and received (ICE) as a "rescue" treatment prior to me being able to receive an Autologous transplant. I received 3 treatments and spent about 3 days in the hospital for each treatment. It was able to put me in remission so that I could receive the transplant.
Hope this helps.
Thanks Patrick for the response. My Dad did his first round, and on day 6 had to take him to the ER. He has been in the hospital for 3 days now - went in with very low white counts (.40), fever, high high rate (ragcing from 80 - 170), coughing (Dr's not sure what is causing this), and pain in stomach/throat, so difficult to eat. His white counts this morning are back up to 3.6, so they will release him in couple of days.
Did you experience any of this? I suspect he will be back into the hospital when he does his next treatment.
Best of luck in your transplant - God bless.
How is your dad doing, hopefully better.
Just for the record I was diagnosed in June 2007, had my Hyper-CVAD and ICE between July 2007 - March 2008 followed by an Autotologous Transplant in April 2008.
The first round of ICE was rough on me, I developed severe neuropathy in my legs and a high fever, but the last 2 rounds I handled very well. Luckily for me I handled the majority of my chemo well (Hyper-CVAD and ICE) so I may not be the best example.
There is more to my story, unfortunatley I had a 3rd relapse after the Auto transplant and after more chemo (I can't remember what it was right now but will let you know) I also developed Myleodysplastic Syndrome (MDS) (more likely due to all the chemo). After another treatment regimen to treat the MDS and the AILT, in September 2009 I recveived a "double" Umbillical Cord Stem Cell Transplant @ UT MD Anderson in Houston; a suitable Matched Unrelated Donor (MUD) was not found. So far I am doing really well and will be back in Houston in April for my 6 month followup.
Hope all is well with you, your family and your dad.
(I will get you the last 2 treatment regimens that I received I just have to check my notes).
For the relapse in September 2008 I received 4 rounds of Gemzar and Oxaliplatin, it didn't put me into remission but there was no increase in size of the lymph nodes. And for the treatment of the MDS and AITL which I started in January 2009 I received 5 or 6 rounds of Decitabine and a high dose of Valproic acid, which worked really well on both the MDS and AITL; lymph nodes actually decreased in size and blast %age (indicator of MDS) decreased to what a "healthy person" should be (0-5%) I was upto 13% if I remember correctly 15% blast would have meant that I had developed Leukemia.
Also, I maybe one of the younger ones on the site I was diagnosed when I was 35 and am now 38, so that probably explains why I have been able to handle the chemo treatments as well as I have.
Message was edited by: patchchong
Hi, My Dad's cancer has also returned. He was in remission for one year. Doc's now give him 3 - 4 months to live, as he can't handle the new Chemo (ICE) they tried two weeks ago. No other alternatives were suggessted, as they say any more treatment would not really make a difference.
Daddy'sHokieGirl, Did the fludarabine work for your Dad?
I was diagnosed with AILT in August 2006. I too had ICE but could not tolerate the side effects plus the lymphoma did not respond to it at all. I can't see in any of your posts if your Dad was ever on prednisone? That was the only drug that knocked back the cancer for me. I was on a high dosage for over six months and put me in remission long enough to get a mini allo transplant. I received cyclophosphamide and fludarabine for three days then nothing for two days, then I received the unrelated donor stem cell transplant. Later I was back on prednisone for GVHD but have been off all drugs for eight months now and in complete remission since Jan. 2008. I know now that the doctors putting me on the pred after none of the chemos worked for me was a last ditch effort and they were desperate.
My thoughts are with you and your Dad-
Thanks Candy. I mentioned prednisone to his Doc. As my Dad contiunes to have fever (100 - 102) every few days, Doc does not want to put him on this drug, due to lowering immune system, i.e higher risk of infections, the drug causes. Were you experiencing fevers when they put you on prednisone and in a physically weak state? They want to start him on Hospice care, and they are giving up on any further treatment. Very frustrating for us, as we are all fighters and Dad has brought us up to never give up. Thanks for your information and God Bless!
My wife Susan was diagnosed with angioimmunoblastic T cell lymphoma in February of 2007. For two years, the KARMANOS Cancer Institute in Detroit, MI treated her with Prednisone. She had very minimal side effects and it kept her lymphoma in check; she never gained a pound from the Prednisone. In December of 2008, she began getting "growths" under her skin around her neck. She left Karmanos to be treated by an oncologist at St. Mary mercy hospital in Livonia, MI. They started her on 5 rounds of CHOP-R therapy in December 2008. She tolerated the chemo treatments well and continued to work full time. Her last chemo treatment was in May of 2009. On June 26, 2009 she had a "clean" PET scan and we were thrilled. Three weeks later, all of her symptoms (weakness, neuropothy, shortness of breath returned. The chemo damaged her heart and she was admitted to the University of Michigan Hospital in Ann Arbor. After two weeks there, she passed away on 8/25/2009 (my oldest son's birthday). She had just turned 62 years old; a very brave and faith-filled individual. The cause if her death was AILT and congestive heart failure. We were married for 43 years and I feel that this terrible disease robbed me of a good 25 more years with this very special person. As a side note, two of our four children have Sarcoidosis. The Karmanos Cancer institute and the University of Michigan claim that there is no connection between AILT and Sarcoidosis. I want to see a cure for AILT so that no one else has to go through the loss that my family and I have suffered. Please keep me informed about any progress being made in the treatment of this disease.
I am so sorry to hear of your news Harish. To answer your questions, yes I did have fevers nearly all of the time but the doctors finally decided they were related to the lymphoma and not an infection. My blood counts had also totally bottomed out from the chemos. I was in a very weakened state, in fact at one point the doctor asked my husband in front of me when I was so sick and in the hospital if I should be resuscitated. Fortunately that decision never had to be made and I improved once all the chemos were out of my system and that is when they sent me home with the prednisone. I am surprised that your Dad's doctors are not pursuing any further treatment but each case is different and I am no doctor. Let me know if there is any other information I can give you.
You, your Dad and whole family are in my prayers-
Thanks Patrick and Candy for your responses! I spoke with my Dad's oncologist, and he has agreed to put him on Prednisone. The tests/cultures they performed a few weeks ago do NOT show signs of infection, and therefore, he agrees that fevers are related to the cancer not due to any infection. Hopefully, we are lucky, and see positive results with the Prednisone. His doctor is also going to refer him to another oncologist who specializes in T-Cell Lymphoma's, to see what other options are available.
Chuck, I did ask our doctor about CCDRT. He agreed it sounded like an option, but first wanted to get a view from other Oncologist (s) (T Cell Lymphoma specialist, etc) before agreeing to do this. Thanks for providing this information.
Patrick, my Dad also had issues with his heart following this round of ICE Chemo. He went into AFIB. They have him on more drugs to help control his heart rate. I am so sorry you lost your wife at such a young age. May God Bless you and your family.
Lastly, my Dad is feeling better today, as the ICE Chemo is most likely making its way out of his system. However, the Lymphoma is there, as his itching, fevers, chills, still persist.
Thanks for all of your input, it's been very helpful! Harish
My Dad lost his battle on Wednesday, June 2nd, 2010. He went peacefully. All the way to his last days, he kept his sense of humor and had no fear of the end. We will miss him dearly. Thanks for everyone's support and responses. God Bless all of you with this terrible disease and God-willing the minds at work will find a cure so people do not follow in my Dad's footsteps.
My deepest condolences to you Harish and your family too. I wish it could have turned out differently, your Dad sounded like a really great guy. Thanks also for keeping us updated, I have been wondering how your Dad was doing but did not want to intrude on your privacy. I believe that the doctors and researchers learn something new from each one of us who battles this dreaded lymphoma.
God bless you-
I am no doctor, so I can't reccomend any treatment. But please go to my blog at http://community.lls.org/people/ChuckLB/blog/2009/04/21/my-ailt-experience. Read the part about CCDRT. This ia a method of testing cancer cells outside of the body to see what chemo, if any will be effective. That is not a treatment in itself, but with the help good doctor it might lead to an effective treatment. CCDRT seems to be something on the back burner that some doctors scoff it, but in this case I would insist on it.
Then. as Candy said, there is the mini allo transplant. Your docs do not seem to have mentioned that.
There isn't a lot of traffic on this site. I found it last winter when I was diagnosed and quickly left, because the information here was so dire. I was diagnosed with angioimmunoblastic t-cell lymphoma in late December of 2008 and finished chemo in April of 2009. If you want to know more about the facts of my diagnosis, you can go to www.animalhousewife.com. You will have to go back a page or two. Honestly, I heard and heard that my chances weren't good if I didn't do a high-dose chemo and stem-cell transplant. That's what Chuck seems to be saying, and it bothered me. I was in remission after three sessions of CHOP and that continued after three more. Things look good for me. I feel great. But of course someonae is going to want to tell me my prognosis isn't good, and frankly that ticks me off. I began blogging about this diagnosis and found: a 20 year old on whom the chemo did not work, a 49 year old on whom the chemo did not work, a man of unknown age who had chemo and has been in remission for 4 years, and a couple of people from Portugal that are just examining their options.
What do you think causes this cancer?
Have any of you, during your diagnosis, been given antibiotics and reacted negatively to them, by that I mean I terrirble hives?
Thank you for the wealth of informaiton that is posted on our rare lymphoma. I am 35 year old woman who is a survivor of AILT. I underwent CHOP and radiation treatments. I was originally diagnosed in July 2005, my oldest son was on 15 months old. I finished treatments on 12/23/05 just in time for Christmas. I found out I was pregnant w/my 2nd child in Feb '06. When I my 2nd child was 2 years old, I find out that I was pregnant with our 3rd child. Its amazing - 2 pregnancies post cancer treatments. I tell my Oncologist I am more fertile now than before treatments. I am grateful and blessed to say that I will have 5 years of remission on Sept. 18, 2010.
Hi, it is good to find this forum and see some positive outcomes, even if not many! Every bit of hope is beautiful. My mother, age 68, was diagnosed within the last month, though she doesn't have things like rash, fever, night sweats or weight loss. She is in stage IV and it is in her bone marrow. She began chemo yesterday, and is receiving CHOEP- have any of you received that? I'm looking into clinical trails for her for things like stem cell transplant and bone marrow transplant. We were intially told that she had lymphoma, then that she did not but that they didn't know what it was, then that is was a highly treatable T-cell aggressive lymphoma, and now AILT.
I read Sue's blog- the Sue with animals! Has anyone heard from her? Chuck, how are you doing?
Many blessings and prayers to you all,
Parker and all:
Sorry to be so slow to respond. I am doing fine! Six years ago I was in Emory University Hospital, about to be released after my autologous stem cell transplant.
I hope your mother is doing well. AILT is fairly treatable. Just be sure she is in good hands. It is not a good sign that it is in her bone marrow. I really do not know if mine was or not; I just didn't want to ask.
Hi Chuck and thanks for replying! I'm so glad to hear that you're doing well, congratulations! Do you happen to know what stage your AILT was when it was diagnosed? My mom is entering the 3rd session of chemo this week, and is in very good spirits, feeling tired but good. She's not sure about attempting the stem cell transplant later though. She has heard it is extremely hard on your body. She's 68. She's considering following the Budwig protocol following her chemo, which will be 6 sessions. Again, has anyone heard from Sue, the person with the "animal housewife" blog? I was watching her blog, but she hasn't posted in some time, since Dec I think. How are others of you out there?
If you have read my blog at:
then you saw what I said about a certain "Dr. X". He told me that I was in "stage 3b" whatever that means. Otherwise I was not told, and did not ask.
Of course I would never make any recommendations about treatment. There are a number of alternative treatments which can make a reasonable claim to being successful. Since there is no money to be made from flax oil, it will probably never be tested, unless some drug company can make a derivative from it and charge for it. Personally, I went with conventional doctors, and decided to "go for broke". I wanted to beat this thing if I could and get it over with.
A small percentage of AILT patients are cured by chemo alone. Nobody seems to know just what that percentage is. The studies that I have found do not include enough patients to make a good estimate. So I will make a poor estimate. Consider the graph I posted which shows sucess with 60% of the cases who have transplants as first line therapy, and 44% for those who have a relapse after Chemo and have had SST as "second line therapy"
Now if we make the assumption that the only difference between the two lines is that some of the people in the higher group were already cured by the chemo (thus didn't really need the SST), then that would imply that 16% are cured by Chemo alone.
But there are a couple of weak points in doing that! First the number of patients in the study is small, so subtracting the results may introduce an unacceptable potential error (CI). Secondly, My assumption about the reason for the difference between the figures may not be valid.
If you look about 8 messages above, you will see a note from Sue's husbamd that she passed away.
Point of clarification. My wife, Susan young, passed away from AILT on 8/25/2009. She was not on any video. She was treated for this disease for approximately two and one half years. She had just turned 62 and was very young looking for her age. Unfortunately the chemotherapy treatments (CHOP R) damaged her heart but in the end, in addition to congestive heart failure, she died from AILT. My God, my four children and I miss her terribly. Is there any real progress being made in curing this terrible disease?
I am so sorry Patrick to hear of your wife's passing from this terrible disease. There are 40 different kinds of lymphoma and the rare ones seem to get less attention than the common ones. That could be changing a bit because I notice there is more information available about AILT on the internet and more mention of it in research papers. I still wonder what causes it to develop, no one seems to have a clue.
Best regards to you and your family-
There hasn't been much activity here, just wanted to check in and see how you're all doing?
My mom has finished her chemo and things are looking good. She feels great and has some hair regrowing. She goes back for another PET scan in March, and for now is following some lifestyle and diet changes that will hopefully support her healing and continued health. I hope you're all well and happy.
I am happy to hear the good news about your mother.
No one seems certain about the percentage of people who are cured of AILT by chemo alone. (that is without SCT) But certainly some are cured. I am sure her doctors will be watching it closely.
This is one area where more data is needed.
What Chemo was she given?
I think diet can be very important, Would you tell us more about the dietary changes?
My hope for the best, and please keep us informed.
Hi Chuck and thanks! She was given CHEOP (yes, there is an "E" in there too) chemo. It was very very hard on her and she was hospitalized twice and needed blood transfusions. But she's feeling great and doing very well. She is practicing some stress reduction techniques through yoga, meditation and gratitude for life.
We recently read this article that we felt supported the importance of reducing stress, when healing from cancer, and I suppose most illnesses:
The dietary changes, as well as some lifestyle changes are through the Budwig Protocol, a program developed in the 1950's by a German biochemist. It would fall into the alternative category in terms of treatments. Some people using it only do that protocol, others, like my mom, embrace both this protocol and conventional medicine. At this time her doc is not recommending stem cell transplant, but i have it on my radar. I think my mom is concerned about trying something that can be so hard on your body, and damaging her system so that she can't enjoy whatever length of time she has to be here, whether that be 1 year or 20 years. She's trying to focus on living well and as best is possible not worry about tomorrow. Easier said than done, but she seems to be doing that well. Many blessings to you all, Chuck, you're inspiring and give us all that always important ray of hope!
This is a link to NORD. "National Organization for Rare Diseases.
The first link takes you to their page on AILT:
The second link will take yoy to their main page
I will also add these links to my blog here: http://community.lls.org/people/ChuckLB/blog/2009/04/21/my-ailt-experience
I was diagnosed with AILT in 2006 at the age of 53. I was stage 4 and the cancer had spread to my bone marrow so after receiving 3 different chemo protocols that were only minimally successful I had an allogenic (donor) stem cell transplant in September 2007. It was a mini transplant meaning I had just enough chemo to knock my system down but not wipe it out completely. The mini transplants are used for people who can not tolerate chemo (like me) and older patients who are in fragile states of health. The side effects from the transplant were manageable and now except for occassional fatigue are mostly gone. From what I have read the minis are becoming more common and the success rates are increasing as well. I have been cancer free for 2 years 9 months. As you are researching transplants for your mom look at the mini and talk to her doctors about it.
I had never heard of the Budwig protocol so I looked it up. I have to be honest here, I am very skeptical and think it could delay someone from getting the real treatment that will save their life. I looked into some alternative treatments when I was sick and came to the opinion that they really didn't work but were appealing because they are less frightening than traditional treatment. Emotions play a huge role in cancer so it is important to think critically and logically when deciding on treatment. I don't mean to offend anyone and I hope none is taken.
Best wishes to you and your mom-
I recall this good site from when my husband was diagnosed in 2008. I didn’t comment until near the end (in March 2009), but the info' was VERY helpful. THIS IS A WONDERFUL site and I did appreciate it so much. I want to add this which I hope will help others.
My husband was in remission from the most commonly used Chemo treatment for about 2 months. Cancer came back. I searched still again for some relief and this time found on this site a recently added comment about CYCLOSPORINE as treatment. The Dr. agreed and prescribed and my husband took - under protest as it tastes just awful. Sad to say my husband gave up and signed up for hospice. One day later, and the day he died the Dr. called to tell me to tell him to not give up as the cyclosporine had worked.
The references that were on this site are: "Evaluation and management of angioimmunoblastic T-Cell Lymphoma......" (2008) by Ash A. Alizadeh and Ranjana H. Advani,
"Treatment of Angioimmunblastic T-cell Lymphoma with cyclosporine"(1997) by R. Advani, B. I. Sikic R. Warnke, B. I. Sikic, and S. Horning.
I am a little miffed that the Dr. had not found this treatment earlier, especially since he said he had successfully used it for another patient a few years back. I wonder if it might have even been used to begin with in place of the common chemo regimen.
My other comment is I believe that attitude plays a large part. I feel so badly that I was not able to help my husband in any way - he was so angry. He would not talk. He hated me and the world.
BUT! it was HIS attitude. I could not change it for him. My daughter was my right arm through this. My son was away but did what he could.
The doctor failed or refused to believe my husband's state of mind. My daughter and I (secretly) wrote a letter to the Dr. hoping that he would be able to offer some medical relief - my thought was a mild narcotic that I have taken daily for 15 years for firbromyalgia. The Dr. ONLY response was to ask my husband if he was in pain. He said no. He asked if he was depressed. He said no (an outright lie of course). So my husband (and all of us) suffered on for several more months before he died. Maybe the hydocodone would not have helped but with death not far away the risk of addiction was zero and it would not have hurt to TRY.
I hope that others will read this and find some useful info.