I have Angioimmunoblastic T-Cell Lymphoma. Very rare. Looking for someone that has this same disease and if they have experienced the symptom of nasal congestion? Also would like to here from anyone who has this disease because of how rare it is.

Hi, My fiance was diagnosed in June to Angiommunoblastic T-Cell Lymphoma. It is very rare. We are in RI, and John has received excellent care at The Miriam Hospital/Fain Center.
He has had 6 chemo treatments. He just had his last one on Thursday and has been doing great! He just had a PET Scan, which came back clean, and he will be going for a bone marrow test tomorrow and then he will be having a bone marrow transplant in Nov.
When John was diagnosed in June, he started off in March or April with a sinus infection, which lead him to the dr's, his lymph nodes were the size of golf balls. He had a biopsy done of one in his neck. I will be perfectly honest it took the dr's a good 2wks before they came up with this diagnosis. He was seen by specialist, that flew into Miriam Hospital, due to the fact that this is a rare form of cancer. I can try to ans questions for you. Ask away..I know it is scary. Catherine, RI

Hi Catherine...My Dad was diagnosed on Dec 24th of 2008 with this type - very scary as not too many people have this type...he is almost 77 and went thru 18 weeks of Chemo - hes had all clean scans but with each scan there have been increased spots on his lungs - now he is getting a biopsy on his lung on sept 30th - he's also had a cough - so not sure if these are fungal spots or if the Lymphoma is now in his lungs - being treated at Mass General and so hopefully they're just fungal spots - how is oyur fiance doing? PS - No nasal congestion - he had sore joints, night sweats and checst pain - (which was lymph nodes blocked causing the chest pain - )

My father in law was diagnosed back in February with Angioblastic T-Cell Lymphoma. He too had his bone marrow tested and did not have it there. At the time the doctor recommended 6 sessions of CHOP with the Prednisone given intermittently. He had a scan after the 4th treatment and it looked great, the lymph nodes shrunk etc. At this point he returned to the UK (he has a home in Florida and England). He finished his last two Chop treatments and was hopeful. He then landed in the hospital because he had low blood pressure and anemia and collapsed (I think its called syncope)?? At that time they did a scan and saw something suspicious so the ordered a PET scan. Unfortunately, the lymphoma had returned with a vengeance. It was now a stage IVb, and had spread to his bones, bone marrow and lungs. They gave him a now terminal diagnosis. They said he now has 3-5 months with no treatment or aprox. 10 months with oral chemo, pred and some other meds. He opted for that and again wound up in the hospital for syncope. Now he is off all the chemo meds because he had an upper respitory infection, and had to go on antibiotics.

He hopes to return to Fla in November. We have been in contact with Tampa Moffit and MD Anderson in Texas. We feel at a loss and haven't meat anyone else with this condition. We feel like a clinical trial is our last hope.

My F.I.L. has felt so weak since just before diagnosis and had had 3 or 4 transfusions..What is your next step/option???

My brother was diagnosed with Angioimmunoblastic Lymphoma today. He has been very sick for the past several weeks - night sweats, high fever, and a spleen that has swollen to 3 to 4 times its normal size. I have been trying to gather information but not much and what there is is pretty grim. They started him on Prednisone and CHOP sessions today. The doctor said it is very rare and not much is known about it and not much research is ongoing. Has anyone found any good info.

I had angioimmunoblastic T Cell Lymphoma in 1997 at the age of 49. I had 8 sessions of CHOP chemo along with predisone therapy. In 1998 I had a stem cell harvest at Northwestern Hospital, Chicago, but was lucky enough not to have to use them. I have been cancer free since June, 1997.

I want to encourage all who are angioimmunoblastic patients. I don't care what the books say, you can survive!!

I am 18 years old and in the process of being tested for lymhpma. i also have nasal congestion...

Hello, I am Female 33yrs old. All of the articles I have read about Angioimmunoblastic T Cell Lymphoma since I was diagnosed after a visit to the Mayo Clinic in Jacksonville, FL have indicated that this very rare non-hodgkins lymphoma happens to men, usually in their 60's.

I was diagnosed on Nov 13, 2009 after pathology from the removal of 2 golf ball sized lymphnodes (tumors) from my neck came in. I became ill the last few days of the month of Aug 2009, thinking that I had a sinus infection. After going to my P Physician, she drew blood, lots of it and it came back abnormal, my lymphocites were abnormal as was the rest of the CBC. I ended up in the hospital as I had become so weak that I could hardly walk.

The lymphnodes in my neck and the back of my head just kept getting bigger and bigger and hurt more and more. In the hospital in IL they could not figure out what was wrong with me, I ended up with an Infectious disease doctor and they ran every test on me. Could not find anything. I was released the next day.

Eventually, I received a needle biopsy and was told that I did not have cancer. After going from specialist etc..And getting worse I decided to try and get into the Mayo Clinic, my Dr. faxed the Mayo Clinic my info and to my surprise they called me the next day. I flew with my mother the following week to Florida. I was in Fl from October 22 to Nov 2nd, 2009 at the Mayo Clinic going thru every test I had already been thru to having a full removal biopsy of two of my lymphnodes from my neck.

After finding out that I had angioimmunoblastic T Cell Lymphoma I went to an oncologist that specializes in that here in IL. On Nov 27th after a bone marrow biopsy, I was diagnosed Stage 3. Tests showed that after my 2nd chemo that my cancer was gone, I am in remission. I had my last of 6 CHOP chemo's on March 10, 2010. I will under go one more Chemo and then STEM cell replacement using my own stem cell's. My Oncologist said this should assure a complete remission. PLEASE NOTE: This is a very aggressive cancer. This cancer also happens to be one of the most painfull amongst all cancer's.

Keep the faith and have a good attitude. Fight the good fight and know that you will beat this thing.

I hope you all have been doing well and on the right road to remission! I posted back in September about my Father in Law and his condition. I have not posted in a long time...unfortunatly, my FIL passed away in January. It was a blessing for him as his quality of life was no longer existant. He was only 72...to young ...

The only advice I can give after seeing how this disease works is try EVERY option available to you, especially the clinical trials....be on top of your own disease, because you have to be your own advocate...good luck everyone!! I wish you all the best and pry for you all the beat the shit out of your cancer!

BAM BAM -
I am so sorry to hear about your FIL - 72 is way too young - I havent posted either in a while..
Update - my dear Dad is battling on....about 3-4 mo ago he received the news that there was no lymphoma in his body - and docs technically said he was in remission - much great news we needed. This news came following another new targeted round of chemo - ONTAC -? that was focussing on the lymphoma in his lungs - so in the middle of that treatment was when he got the news. no sooner did that news come it was met with him catching an pneumomina that placed him in Mass Gen for another 9 days - he beat that!! he was close tho - was given his last rights in all - but so he's on his 7thlife right now - it's a constant up and down battle with this nasty disease and we the fam just ride along with it - is very tough to see a beloved parent go thru all this -
Kjerstin - keep marching forward - and bless each day and moment you have -in my thoughts -

Thanks Tara - you too!!! Sounds like you have the correct frame of mind............
My Best
Beth

I am new to this site and have just read all of the posts. My prayers go out to everyone. I have Anaplastic T Cell Lymphoma but the latest biopsy came back as Anaplastic Large Cell Lymphoma. I have no idea what the difference might be? I am going to the University of Michigan hospital next week to try and get better answers. To date all my doctors have done is cut out the affected area and radiate it. What I didn't mention is that all of my cancer has been in my skin (very rare). Has anyone else ever heard of or had any experience with this? What was your treatment? Also, the post regarding the nasal congestion really got my attention. I have chronic sinus problems (and sinus infections) that no drugs or sprays have been able to conquer. I never thought of connecting the two. I am going to mention this to my UofM doctor to see what he says.

BGrobert:
There's no difference between anaplastic t-cell lymphoma and anaplastic large cell lymphoma. anaplastic large cell lymphoma usually just means it's an NHL affecting the T-cells.

Terms like "anaplastic" (means the cancer cells don't look like healthy cells and that they divide quickly) and "large" are merely descriptors.

In short, the most likely answer is that two different people are using the terms interchangeably. It's probable that nothing about your dx has changed.

Since yours is restricted to the skin, you may have a rare form known as primary cutaneous anaplastic large cell lymphoma (PCALCL)--- "primary" here refers to the place where the cancer started, and for you that's in the skin (cutaneous).

If I were you I'd go to the Cutaneous Lymphoma Foundation and download their 'fast facts' PDF on PCALCL.

Ross

I was diagnosed with Angioimmunoblastic T-Cell Lymphoma in July '06 at the age of 43. I had trouble getting doctors to even diagnose my problems. I was tired all the time, was having night sweats, major headaches, swollen lymph nodes, couldn't sleep, couldn't breath, developed a rash over my entire body and was in terrible pain. I was finally admitted to the hospital and put into isolation. They had no clue as to what I might have and ran test after test. Finally they did a biopsy on the lymph node in my neck and 14 days later gave me the diagnosis. I was told by my oncologist that I had 5 years to live and that I was between a stage 3 & 4. It was recommended that I do R-CHOP. I was to go in for classes on therapy and decided that not to go through with it. I was lucky and 6 months later was in remission. In Febuary of '09 I was hospitalized again. I was supposed to keep seeing my Oncologist but lost my health insurance in May '09. I am still tired all the time, my lymph nodes in my neck are visable and am suffering from night sweats and headaches. Without insurance I can only go to the county hospital and believe me its better to be at home then there. I am glad that I have found this site as I can atleast know that I am not alone. Has anyone else had a body rash?

S Moreno-
So wait a second, did you undergo the RCHOP chemo regimen or not?

And by rash do you mean an itching?

Ross

No I did not go through the R-Chop.

A red rash over my entire body that was under the skin and yes it hurt and itched.

Beth (Sealot) Thank you very much for your comment it means more than you know.

Update: I started my stem cell harvest this past Monday. From Monday to Wednesday they were only able to harvest 401,000 stem cells....this process takes 4 hours on a machine. They have to be able to harvest at least 2 million to 5 million stem cell's (on normal people it usually takes 4 to 5 days to complete. The shot they have me on called Neuopegin apparently is not working on me because I am so small. I am 5 foot tall and don't even weigh 100 lbs. I never have even before getting cancer. In any event I was told yesterday that they have to put it on hold and order me some new drug to try and get my stem cells to release into my blood stream so they can harvest them. (This process is basically dialysis only just for harvesting stem cells.)

GOOD LUCK TO ALL WITH YOUR BATTLE!! Keep kickin cancer's butt.

kjerstin, thanks for your assistance. I will look into everything and see what I can do.

As for my rash it was all under the skin the first time so no scars once it was gone, was totally different the second time, was on-top of the skin and was even on the bottoms of my hands and feet. Both itched and hurt.

The first labwork was done in Los Angeles, Stanford and at the National Cancer institute. The second biopsy was done by Stanford all confirmed the diagnosis of the lymphoma.

I didn't like the first oncologist I had at Palo Alto Medical Group (Sutter Health), so went to Stanford and was very pleased.

Thanks to everyone on this site - its good to know I am not alone.

Moreno-
Congrats, especially on dumping an oncologist you didn't like and finding one that you do. Many people will stay with the same doc even though they don't like him or her; provided - like you - you find another one at a highly qualified facility like Stanford, switching is most often the right thing to do.

Ross

Dear S Moreno,

The importance of a second opinion cannot be overemphasized.

In any case, may I suggest that you refrain from eating food that supposedly feeds a cancer. [Stop milk and milk products, meat and sugar]. Also don’t take alcohol which burdens the liver and keeps the body more acidic which is the environment disease thrives in.

For protein I suggest you eat fish, which originally had scales and fins, because those are not toxic to the body. Also chick peas and lentils.
[Stop seafood like prawns, shrimps, cuttle fish and crab and fish which originally had only skin (no scales) like shark, dolphin and some types of tuna.
Aviod pork and pork products like poison.]

Moreover please drink enough fluid; water and fresh fruit juice (including those that contain VitaminC which helps the immune system). SourSop fruit helps keep body cool (as some would say), meaning less acidic. Include green tea.

Three years after my last Chemo (6th R-CHOP) for DLBCL I still take two stalks of Asparagus every morning before breakfast. I also consume muesli with soya milk for breakfast. Oatmeal is also fine.

Another suggestion is that you stop using devices that use electromagnetic radiation (mobile phones, cordless phones, wireless internet connections, etc). Keep well away from them.

Finally I have heard about the benefits of Oxygen against cancer. That is why I do light exercises and eat raisins, dates and spinach often because it strengthens the haemoglobin which carries oxygen to cellular level.

I have personally benefited from doing the above to stay cancer free. (Click my name for more info about me). The theme of all the above is that they work for your benefit and not that of atypical cells.

"Atypical cells can revert to normal if the underlying cause is removed or resolved."
http://www.mayoclinic.com/health/atypical-cells/an01111

You may also want to read another post on this site.
Search “Terrie05” and then do a Find for “hydrogen”
Terrie05 on Thu, 04/01/2010 - 15:16. mentions about "food grade hydrogen peroxide".

If it is of any comfort to know, I involved a number of oncologists and other doctors from different hospitals to obtain all the information I needed to make decisions before during and after my treatment.

Take care
Felix

Dear S Moreno

Terrie05 added this to another thread on this site in response to my quoting that. Here is what it said
"I am not an expert on the food grade hydrogen peroxide so wanted to give you the link so you can read about it. http://www.naturaldiseasecure.us My husband was trying the food grade HP for a while until we decided on a 6 part regimen that is in the Bill Henderson Cancer Cure book. We do not know if it's working yet and plan to get scanned first week of June. If it is not working, we will check into another alternative method before going back to high dose chemo."

Hope that helps.
Felix

Felix-
I like a lot of what you're contributing here very much, but I would like to correct you one common misconception, and that is that sugar feeds cancer, and by consuming sugar a person is feeding their cancer. This is a widely held misconception.

There are plenty of reasons for all of us to reduce our sugar intake, including cancer patients, but those patients don't need to worry that if they eat a ding dong they're helping a tumor grow. Cells use glucose for energy, whether cancer cells or healthy cells, but increasing one's sugar intake isn't fueling the cancer. If this were true then you could cut sugar from your diet and starve your cancer. According to this line of thinking, you would by extension be starving healthy cells of sugar as well and your whole body would collapse.

Ross

Thanks Felix/Ross,

Any information is helpful.

-Shel

Hi Ross

Thank you for the kind words and for throwing proper light about the sugar.

I deliberately used the word “supposedly” so others interested would find out more. Perhaps I should have said “simple sugar” because that is what I meant.

When I was sick with DLBC Lymphoma Stage IV I held on to life by the skin of my teeth.
You would understand my saying that I tended to be safe rather than sorry and didn’t want to risk finding out that an alternative was disastrous.

The school of thought I followed was that it was better to limit the amount of “simple sugar” you eat (because your body also makes sugar from other foods you consume). Too much sugar would boost the creation of insulin to levels more than the body needs and the insulin in turn may encourage cancer cells to grow. Who knows! I certainly didn't. But my stance was to err on the side of caution. I completely cut simple sugar (such as what I would have used to sweeten tea, muesli and fruit drinks) and did not eat sweets, chocolates and cakes when I was sick.

Thank God I am well now and I do eat simple sugar in moderation (except perhaps during Christmas and birthdays!).

Trust that clarifies and thanks again.
Felix

I am posting for JohnnyP (his fiance) Cathie,
I have not posted since John was diangosed in June of 2009. He is coming up on his 1 yr anniversary in the next couple of weeks. The past year was to say the least horrible. John had started out with a sinus infection that would not go away. He could not sleep, became extremely tired, run-down, night sweats, he just could do a thing for approx. 2wks. Week 2, he was rushed to the ER, if he did not go to the ER that day he would have been dead. His blood level was a 3! His Dr. noticed all his lymph nodes were the size of golf balls ALL over his body. He was sent to the hospital where he had a biopsy done on one in his neck. He was in and out of the hospital after that for about a week. They could not figure out what was wrong with him. The ran so many tests, finally with a team of oncologist and a specialist that flew in just to see John determined it was Angio. T-Cell Lymphoma. He did at least 6 rounds of RCHOP. The Dr. recommended John go for a bone marrow transplant. He harvested his own cells and had a transplant in Nov. He has had 2 PET Scans & 2 CAT scans, since the transplant he remains CANCER FREE! Thank you to Dr. Castillo, Dr. Jacobsen and the magnificent nurses at Dana Farber and Brigham & Womens in Boston, MA.

This is outstanding, thank you Cathie, so much, for returning to this site and letting us know how he's doing!

Ross

Hi I was diagnosed with Angioimmunoblastic in Feb. I had 6 treatments of CHOP with 5 days of Prednisone after each treatment. My hair started falling out after 3 weeks-very disconcerting! I am in remission but my Dr. is recomending ICE(4 days in the hospital with heavy duty chemo) and then a Autologous transplant at either Hackensack or Robert Wood Johnson Hospital. I don't want to do that but it sounds like I'll have a better chance of surviving this horrid cancer. I never had night sweats but I did break out with rashes on different parts of my body; it went away when I started treatments. I also never had any sinus problems.

My husband was diagnosed with this disease in March.He has had 4 Chop and his first ICE treatment this week. His doctors also recommend a rescue stem cell transplant. I have researched this treatment and I have found this is the way to go. After the CHOP my husband has gained back his strength and is feeling well. So it is hard for him to think that he needs further treatment, me too. But everything I have looked into says this is the right way to go.

Although I'm not aware of stats specific to any T-cell lymphomas, the National Marrow Donor Program provides statistics regarding transplant outcomes for DLBCL and FL as well as HL HERE, worth checking out since it notes the importance of the source of the cells.

This is the first time I have been at this site since my husband and I didn't know exactly what type of t cell lymphoma he had until today. We were trying to absorb the news of the initial diagnosis. He was diagnosed with angioimmunoblastic T Cell Lymphoma on 6/30/10. It has been a very scary three weeks and the rarity of this cancer has not been very reassuring. After reading some of these comments and the length of time it took to diagnose, he was lucky that they found out what his cancer was and he has already had one treatment of CHOP21. His symptoms are better, but before we knew he had a serious problem, he had the skin rash in January and a sinus infection in March. Both took a long time to get rid of. It wasn't until his lymph nodes began to swell that he went in for a biopsy. His doctor is recommending a stem cell transplant and I am researching the Fred Hutchinson Hospital in Seattle. We live in Hawaii, so it is going to be difficult to leave our support system here. Does anybody know which is the best west coast hospital? We've been given three options, Seattle, Stanford, or LA.
I was happy to read about the success of treatments, since the internet has dismal outcomes. He does not have it in his bone marrow and his PET scan looked good. We were very relieved with this news. He also was in great shape before any of this happened. I need a lot of reassurance and would appreciate any response from those who have experienced this first hand. Thanks

Based on reputation, I think your options include:

UCLA Ronald Reagan Medical Center
City of Hope
Stanford Cancer Center
University of California San Francisco Cancer Center

But possibly your best bet is where your research has started: Fred Hutchinson.

Hi and best wishes to you! My mom was diagnosed a few weeks ago as well, but she does have it in her bone marrow. She has not had the rash as far as we know, or the fever and night sweats. She does recall one dot several months ago that was really itchy, and returned after healing, in the same place, but she thought it was an insect bite. It was that size, and only one. Does that sound like a possibly rash? She is receiving CHOEP and is responding well so far. "Pewilla", did you read some positive notes about success of treatments other places online? My mom was first diagnosed with lymphoma when she was having trouble breathing due to bronchitis, then told it was definitely not cancer, and then told it was this one. It's been a roller coaster ride, but her spirits are strong and upbeat. Her doc has not mentioned the stem cell transplant, but I've been reading and looking into that, as well as bone marrow transplant. I'm also looking at Fred Hutchinson, but my mom is in Mississippi. Best wishes to you all, it is so good to have this support and information here. Can anyone comment or link me to info on stem cell vs or in addition to bone marrow transplants? thank you!

hi and thank you! that's good advice about the internet and prognosis. my mom is 68. all my best to you, your husband and mom. is your mom doing ok with her treatment? i hope you're able to find some time for taking care of yourself as well, you have a lot going on!

My brother (45 yrs old) was diagnosed with stage 3b angioimmunoblastic t-cell lymphoma in March. After 6 chemo sessions the doctors determined he would need 8 so he's had 7 now. After the 8th they will do a PET scan and determine if he's in remission so they can do a bone marrow transplant. I'm curious - some of you are doing stem cell replacment, others the bone marrow transplant - what determines which one to do?

These posts have provided some good information. Thanks to everyone for sharing.

Hello,
Thank you for the information. My husband has been diagnosed with angioblastic T cell lymphoma as well as T cell enriched B cell lymphoma. He has had 4 treatments of RICE and is scheduled for his first of 2 ICE treatments to be followed by autologous stem cell transplant. It sounds like some of the mentioned people have had or are undergoing this treatment. I'm hoping it is the best treatment in this situation. Can anyone give me some updates or feedback? I would appreciate it. He had three opinions before he obtained an appropriate diagnosis however we did not yet get a second opinion regarding treatment. We felt we couldn't prolong treatment because the cancer is widespread. Thank You.

Hello I am sorry but I see that I made a mistake in my above post. My husband has had 4 treatments of RCHOP not RICE. He has responded well, so far. Thank You

Hi my husband has angioimmunoblastic t-cell lymphoma. He had 4 CHOP and 2 ICE treatments. We are awaiting autologous stem cell treatment any day now, we are waitng for a bed to become available. He is doing well and had a complete response to the 4 CHOP treatments. Ice was done in preparation for stem cell. His stem cells have been havested so we are just waiting. From everything I read this is the way to go for treatment. Hope your husband continues to well.

Godspeed and best of luck to all that are battling this T-Cell lymphoma and to their care-givers and loved ones - keep strong and take one day at a time.
On April 29th - I lost my wonderful and dedicated father to this cancer. He was 77 years young! and had been through so much - although he did kick it into remission after 1 round of CHOP and then a partial round of Ontac - it took a toll on his organs and he went down-hill very quickly in the month of March.
He was at an advanced age when he got diagnosed with this so of course age was not in his favor.
I miss him terribly. But he led a full and good life filled with ups and downs - as LIFE is.... Please keep the faith and research all your options. My best to you Beth

Hello Thank You. Beth, I am sorry to hear about your husband. I hope you are doing as well as can be expected in this situation.
Alicef, can you tell me where you are treating? we are at University of Pennsylvania. It sounds like our husbands are getting the same treatment which I now think must be the protocol. Best of luck with the transplant. Thank You