Non-Hodgkin's Lymphoma

[livingwith]

I am 32 years old and was diagnosed with NHL Lymphoma in Feb 2008, though had been symptomatic since the previous October. It took a few months to be sure I had the cancer as it creeps into the body very stealthily. By then the tumour was huge and I was given a lung drain that gave 3 litres of fluid produced from the tumour and put onto 6 cycles of R-CHOP. The response was dramatic and I was very happy. It was then concluded I should go onto RICE, 2 cycles.
After completing this the pet sc...Read the full article

[TAKEO59]

dear living with-
in 2003, at 43, i was diagnosed with stage 4 indolent nhl. it took over a year to get diagnosed. even though i began this trek with bad doctors, i've ended up with good ones. i have a great oncologist, whose opinions and advice i truly respect. i'm treated at a university hospital that is staffed by the most incredible people i've probably ever met.
anyway, when diagnosed with stage 4 cancer, life is never the same. further, i have learned that nhl is not a curable cancer, but rather, one that is managed over time, or at least mine is. i first went through chemo coupled with rituxin and got a partial response. a year later, it came back and i was put on a maintenance of rituxin which amounted to 4 weekly treatments every six months for 2 years. again, it came back and i was offered an opportunity to participate in a clinical trial for another anitbody, galaximab. while i don't know if i got placebo or the trial drug, i still have tumors growing and so i start chemo again next week, with yet another drug called treanda (which is new to the US).
so you see, it's 2009, and although i was given 3-7 years on average survivability, here i am in my sixth year. it's not always fun living with and managing this disease, but i must say, it beats the alternative. my partner of nine years walked out after a year. i've faced most of this by myself with the grace of god and the prayers of friends and family. it is scary--the uncertainty of the disease, as well as the many treatment options. i encourage you to inquire about clinical trials and go on line to learn about treatment options. rituxin, it seems, has wiped out the cancer in my bone marrow, even at the molecular level. i know this because i'm preparing for the day when i may need a stem cell transplant to save my life. galaximab is another promising antibody, that coupled with rituxin delivers a one-two punch to this cancer. a good doctor helps immensly--that is, one who listens to you, understands you will do your own research and is not intimidated by the patient educating him/herself and asking questions.
i know of people who practically live on rituxin maintenance. i know others who are free of this disease after a bone marrow or stem cell transplant. there are alot of options, dear friend, and a good doctor will explore these with you. visualization is also i viable and good practice.
i know this can be unsettling and very scary. i hope you have a good support system, because that's very important. just hang in there, do some research of your own so you can speak and ask questions intelligently of your doctor. pray if you believe in a higher power. employ positive thinking and visualization. join a support group if you don't have one. and feel good about your doctor so you can have some confidence in the level of care you're being prescribed. i don't believe this disease is a death sentence. it's a chance to do so many things differently that so many people never get the chance to do. you almost have to live as if today is your last. leave as little as possible undone; say i love you whenever you can; listen to others; be good to yourself.
take care, living with.

[skolozhabskiy]

New anticancer therapy - http://www.semascience.com/index.html

[1erm2005]

I'm not sure who you are TAKEO59 or Skolozhabskiy,

Boy, do we have a lot in common. I was 53 (now 62) in 10/00 and also diagnosed with Stage 4 indolent NHL. Started out with a cold though a year (12/99) prior I had a non malignant growth (tumor) removed from my perodid (sp) gland (right side neck). I began treatment at Memorial Sloan Kettering Cancer Center in Westchester Co, (Sleepy Hollow, NY) in 12/00 and had 6 cycles of R-CHOP. Went into remission for some 26 months. Then 1st relapse. Had CEEP regimen of 6 cycles then about 19 months remission or so. Relapsed again. Then the olde reliable Rituxan and a shorter period of remission 12 months or so (c. 2005-06) another relapse. Then a Zevalin shot (10/06) (radioimmune therapy) was to last 12-15 months- I got 12ish. Another relapse. CT scan 12/07 indicated slow growth tumors had returned. 3/8 f/u CT scan indicated slightly aggressive tumor activity Oncologist recommended clinical trial with Velcade (Bortezemide) 8 cycles, 4/08-9/08. At 4 months (July 08) 90% tumor reduction as evidenced by CT scan; in 10/08 CT/PET scans indicated meds stopped working and tumors were on the move again. Recommendation "let's wait until 2/09 and take another CT scan." 2/09 CT scan indicates tumor activity and now they want to try Treanda. Sound familiar. There is much info on Treanda (Bendamustine) 30 years used in Europe with pretty good results. My prognosis is a bone marrow transplant apparantly after this next round of chemo as I guess a set up for the BMT. I have consult on 4/7 in NYC. You obviously know from what and where you speak. Your outlook, attitude, and support group(s) I'm sure have as I have kept my spirits high over these 9 years. Though most days fatigued, with neuropathy in both feet and right hand I keep busy and usually don't think about it. Though this time around I am more concerned for some reason. As you know this has NOT been a walk in the park by any means and the Good Lord has seen me through all of this to date. I still believe he has his hand on me and has other plans for me in this life. When you said you didn't know whether you receive plecebo or the galaximab wasn't the bag labelled galaximab when the nurses matched you up with the Rx?? You give wise counsel since you've run the course. Yes, this can be a marathon for many of us and unfortunately a sprint for others. It's a crap shoot with NHL. So, how's the Treanda regimen going after a few weeks? Any side effects experienced? I would especially like to continue the dialog asap. You may email me at [moderator note: e-mail address has been removed]. I live in Metro NYC and would like to compare notes. Commrade in arms, keep up the good fight. May God richly bless you and continue to give you the strength to carry on and provide a miraculous complete healing. Let's keep in touch. Best regards, ED.

[Laila]

A 20 year old female-my cousin-.Diagnosis:High grade B-cell non-Hodgkin lymphoma/stage IV with post R-CHOP relapses in brain and spinal cord.

She was presented on 3/June/2008 with fever, abdominal pain vomiting and jaundice. She was found to have hepato-splenomegaly and as cites. Abdominal CT was done which revealed multiple liver masses, biopsy was done which revealed non Hodgkin lymphoma;high grade B-cell, CD 20+.

She received CHOP-R total of 8 courses,which were complete at 8/9/2008.



PET scan/CT scan whole body was done on 9/2008 showed no active lesions and the patient was considered in CR. Patient was scheduled to start on maintenance dose of rituximab. There was an interruption in the follow up until she admitted again for back pain,headache and dizziness in February 2009. Brain CT was done which showed a lesion in the frontal lobe.

Brain MRI :finding were highly suggestive of GlobalSat.



MRI spine: revealed lesion in lumbar area.



Brain biopsy done on 18/2/2009 which confirmed the diagnosis of non Hodgkin lymphoma(high grade B-cell).



She was started on triple intrathecal chemotherapy (hydrocortisone, Methotrexate and ARA-C) followed by high dose MTX. Patient refused Ommaya reservoir.



Radiation therapy to brain was started on 25/2/2009 in another hospital which consists of radiation and lumbar area.



The patient didn't come for follow up until 5/2009 when she complained of right sided weakness. Inability to walk and urine incontinence. She received systemic MTX. 3g. on 5/2009 as well as triple intrathecal therapy 3 times in addition she received systemic high dose MTX (3g) 3 more doses. Then there was some interruption in the folow up. On 6/August/2009 she received systemic MTX 3 g.

Wuth interthecal triple therapy on 27/7/2009 and 2/8/2009.



MRI for brain on spine done 7/August/2009 and a new lesion in cervical area was found. The patient was received 15 session of radiotherapy cervical area.



20/August/2009 after noon she went in a coma and still didn't wake up.

So my answer is what's left to be done???

And for your information: At 2/2007 she was diagnosed in the same kind of cancer in her ovarian,but she took the medications and after a year it came to her brain.

Hope your doing okay..and keep in touch

Take Care!!