The Leukemia & Lymphoma Society Community : Discussion List - Rare Lymphomas

Has anyone else been diagnosed with Mycosic Fungoides?

communityreply@lls.org — Sun, 24 Oct 2010 22:40:55 GMT

If there are other MF patients out there, I would be interested in communicating with you. Such a rare disease makes for lonely times.

Best wishes to all ... :-)

Anyone been treated for Double-Hit Lymphoma or Burkitt's Lymphoma?

communityreply@lls.org — Fri, 07 Dec 2012 05:48:06 GMT

Hi...I recently joined this DB and would like to introduce myself.

I was diagnosed with a rare, highly aggressive DLBCL in July 2012--NHL with a double-hit translocation: my biopsy tested positive for Bcl-2 and c-Myc chromosomal abnormalities. Consequently, the tumor in my mesentery doubled in area every 2 weeks. When I meet with my onc for the first time on July 25th, he did a BMB and it came up negative...that was a relief!

Given my cytogenetic diagnosis, the onc recommended 8 cycles in 3-week intervals of DA R-EPOCH regimen, plus CNS prophylaxis administered twice per cycle. With R-EPOCH, high-dose chemotherapy is given for 5-straight days following Rituxan on Day 0. HDCT is intended to make the patient 'nadir' after each cycle--when ANC drops to or below 0.5 (a.k.a. 'severely neutropenic'). I didn't nadir after the first 3 cycles; the protocol was to increase the dosage by 20% each round. By cycle 4, the dosage was 75% higher than in cycle 1. It was uncharted territory for my onc; he mentioned the long-term concerns of myelodysplastic syndrome (MDS) attributed to accumulative HDCT.

A week after cycle 4, I hit the nadir (ANC = 0.1), and got oral mucositis for good measure (it was excruciatingly painful). FYI...before starting DA R-EPOCH on August 13th, I went to MSKCC for a 2nd opinion. Dr. Mathew Matasar, their lymphoma specialist, agreed with DA R-EPOCH and CNS prophylaxis; however, he recommended 6 cycles (instead of 8) followed shortly afterwards with conditioning and intensive therapy in prep for SCT.

By cycle 4, my mindset shifted from front loading all risks of R-EPOCH and SCT in prolonging remission, to thinking seriously about the long-term accumulative effects of the HDCT; moving forward with SCT will increase the risks of MDS. Since DHL is so rare (and under diagnosed), there is insufficient research or statistical significance to support SCT as a measure of improving long-term prognosis or OS.

Would love to hear from those who are currently being treated or have been treated for DHL. It would be great to know the regimen (i.e. R-CHOP), if you're still in remission and for how long, and your age range (if you're <40, 40's, 50's, 60+). I would also like to hear from those who have been treated for Burkitt's Lymphoma--c-Myc is a common abnormality associated with BL.

I would like to send my best wishes and positive energy to those who are being treated and those who are in remission!

Thanks,

Anyone out there with SPTCL?

communityreply@lls.org — Tue, 20 Nov 2012 12:07:35 GMT

Hi! I am not a stranger to SPTCL. I was diagnosed with it in October 2009. Through my research, I have discovered other SPTCL patients out there and would like to connect with more. It is good to be our own health care advocates and assist each other with treatment options, etc. I am looking forward to hearing from you!

Jodi

Angioimmunoblastic Tcell Lymphoma ? Anyone dealt with this

communityreply@lls.org — Sun, 08 Aug 2010 22:41:20 GMT

Hi, my dad was just diagnosed with Angioimmunoblastic Tcell Lymphoma a rare lymphoma that they see one person every three to five years.

Has anyone dealth with this. My dad is 76 years old and not in good health. They stated 40% chance of survival with chemo. I don't think he

will make it through chemo. He doesn't have a good attitude. (that is saying it mildly).

Any assitance would be great.

Karen

Angioimmunoblastic T-Cell Lymphoma (AILT) (AIL) (AITL)

communityreply@lls.org — Thu, 23 Apr 2009 23:32:08 GMT

AILT was included under the "less common Lymphomas" heading on the old board. It got enough posts that it might deserve it's own thread here. However, if the administrator feels that it should be classed under a more general catagory like "T-Cell Lymphomas" or Less Common Lymphomas" that would be fine by me.

I am putting the general information about AITL in a blog so it will stay there insted being lost in a thread. Here is the link to my blog:

http://community.lls.org/people/ChuckLB/blog/2009/04/21/my-ailt-experience

It isn't finished yet but is to the point that it might be useful.

ChuckLB

Angioimmunoblastic T-Cell Lymphoma - any others here?

communityreply@lls.org — Tue, 31 Jul 2012 19:22:44 GMT

Hi I'm a 48 year old woman diagnosed 5/1/12 with Angioimmunoblastic T-Cell Lymphoma. Currently on round 5 of 6 (or possibly 8) of RCHOP, with autologous stem cell transplant planned for after. Anyone else out here currently fighting this disease, or successfull and in remission?

Thanks!

Christy

36 and Large Granular Lymphocytic Leukemia - Anyone familiar with LGLL?

communityreply@lls.org — Sat, 20 Oct 2012 07:24:07 GMT

36 and Large Granular Lymphocytic Leukemia - Anyone familiar with LGLL?

My husband was diagnosed with Large Granular Lymphocytic Leukemia (LGLL) this last week. They feel he has had it for the last 2 years due to his CBC White Blood Count. We are waiting to here if it slow or aggressive from the Bone Marrow Biopsy. We have researched the different types of treatments. But we are having a hard dealing with the fact that he has LGLL. The Hematologist said for the most part it is rare for some so young to have it. I want to get a second opinion. But we don't want to delay treatment if it needs to be started. My husband is currently not having any symptoms. It was a fluke he was diagnosed. He experience chest pain & thought he was having a heart attack. While running blood tests they noticed what they thought was HCL (Hairy Cell Leukemia) because they found literal hairy blood cells. When we came in for the follow up with the Hematologist he noted that the tests from pathology came back with a diagnoses of LGLL. We are so overwhelmed. Both on edge. The Hematologist just said go home try not to think about it and enjoy your 2 little ones. But its hard not to think about and 'google'. One thing I appreciated is that the Hematologist said only to trust the Leukemia & Lyphoma Society. So here we are. Is there anyone that here that is or care for some one that has been diagnosed with LGLL so young?

Anaplastic Large Cell Lymphoma

communityreply@lls.org — Fri, 09 Mar 2012 16:42:13 GMT

I was diagnosed 2 months ago with Anaplastic Large Cell Lymphoma - Am in the middle of my Chemo, doing aggressive CEOP chemotherapy ( E instead of H because I have an underlying heart condition). I'm a 36 yr old female. I noticed there haven't been any/many posts since 2009/2010 for ALCL. Mine is Systemic, not cutaneous. Mine is ALK +.

Is there anyone else out there going through, or who has gone through Chemo for this diagnosis?

pralatrexate & T cell lymphoma

communityreply@lls.org — Sun, 01 Jan 2012 02:03:24 GMT

I haven't posted very often since 2008 but hope that this may be of benefit to those with T cell NHL...

My husband has just finished his second cycle of pralatrexate (7 week cycles with 6 weekly doses of IVP pralatrexate (Folotyn), one week off then repeat as long as side effects are tolerable & there is no disease progression) and I am very happy to report that by PET/CT scan there has been significant disease regression

It's a great way to start the new year!

He was first diagnosed back in 2007 with enteropathy associated T cell lymphoma after a small bowel obstruction. A few cycles of Q 2 week CHOP then a mini haplo BMT. We dared to think that he was cured--after all, there was no evidence of disease for 4 years!!! And he was back to work, traveling & enjoying life!

But new onset back pain this past spring (2011) turned out to be caused by a tumor near the spinal cord. Everyone was shocked, especially his transplant docs. Radiation took care of the new tumor mass & a subsequent DLI seemed to be effective but only lasted for a few more months...

But by September, the lymphoma was back with a vengeance. Widespread bone mets with cord compression requiring emergent radiation to the cervical & thoracic spine. There were major pain & mobility issues but he has managed to worked through these.

But back to pralatrexate...it wasn't available 5 years ago. It's VERY expensive! But it seems to be working!

My husband has not experienced the two most common dose limiting side effects: thrombocytopenia & mucositis. He has had major issues with BLE edema & rash--resulting in a cellulitis that for all intents & purposes was a 2nd degree burn.

But he is back to work & feeling pretty good. Just want to give hope to those with T cell lymphoma--because we don't have many options--we know that pralatrexate is not a cure but we are grateful that it has given us more time with those we love.

Please contact me if you have any questions/concerns about T cell NHL or pralatrexate.

Take care & love life,

Lynne

Pain Under the Left Lower Rib, in remission from Subcutaneous Panniculitis like T-cell Lymphoma

communityreply@lls.org — Wed, 08 Feb 2012 20:03:30 GMT

Hi I was diagnosed with Subcutaneous Panniculitis like T-cell Lymphoma type A. I am in remission since January 2011. But I have pain that's been bothering me since March 2010 when I was still sick with this rare disease. The pain had never left me 24/7. I have pain under my lower left rib cage that sometimes go around my diaphragm. It feels like pressure, like there is a stone inside me then all of a sudden it feels like someone is stabbing me with a knife or a punch in quick second. It get worse later the day and specially when I am tired. Sometimes it is a throbbing pain. I had been through many test like CT scan, x-ray and ultrasound and all came out normal. I am wondering if some of you who's in remission have this kind of pain still? Please help...

Michelle

Non-Hodgkins Subcutaneous Panniculitis-like T-cell lymphoma

communityreply@lls.org — Fri, 21 Jan 2011 04:43:36 GMT

After a month, a abdominal cat-scan, and a bone marrow biopsy in my hip it feels like im floating on a cloud of "what the hell". Im 25 i just had a baby and now your telling my i have a lesion in my arm and a rare type of cancer i can hardly spell or understand. Now im being sent home with a steroid cream, and a strict vitamin regimen. Shouldn't i be doing something more? God when i first drove the 6 hours to meet this stupid doctor my first thought is , wow shes young, and way to pretty to be a doctor. The whole "i've never treated your type of cancer and only seen it once in the teaching hospital i attended" did NOT instill confidence in me.

This discussion really didn't have a question, i just felt really lost today reading all the posts and seeing everyone's active treatments.

~Danielle