Mantle Cell Lymphoma

I am 39 years old, female, and has been diagnosed with mantle cell lymphoma - diffuse in November 2005, advanced stage. I experienced no B-symptoms but for two bumps in my upper left arm and one behind my right ear. Also, a burning sensation in my abdomen. Nine cycles of CHOP + Rituxan / Mabthera was prescribed. After 4 cycles and a CT scan it was trimmed back to 8 cycles. Tumors scranked from 31 mm x 27 mm to 11 x 10 mm (para-tracheal), 32 x 16 mm to 14 x 10 mm (pre-carinal) and abdomen - 45 x 39 mm to 26 x 24 mm (peri-pancreatic) and 90 x 41 mm (mesenteric Lymph), for example. Side effects have been mainly inflammation of the vein that took the drip, tissue / muscle deterioration in the unlucky arm, non-stop heartburn, gas, water retension, incessant neuropathy in my hands and feet and flash pains. At the lowest point in the cycle, I have difficulty walking, being too tired. The cost of the treatment is about R35 000 per cycle (devide by 6 for USD), which without a medical aid would have been unattainable. In the beginning I struggled with vomiting, lost my hair within 3 weeks, but as the cycles went by, I could handle it better - sleep the same afternoon and eat something. For those wondering about their sex life - even touching my husband's hair hurts my fingers, I am tired, and experience no sexual arousal but for the last 4 -5 days before the next infusion. From the internet and other experts I understand that I have not been placed on the most effective treatment with hyper CVAD and others achieving longer remissions. My oncologist sees these as fashions of the industry, which concerns me deeply. He views these more taxing treatments as second line or emergency theraphy. He also believes bone marrow transplants of whatever nature do not make a meaningful difference in the treatment of Mantle Cell Lymphoma. However, he swears he has patients cured for longer than 10 years on CHOP + R (?). My next CT scan is coming up, and we will all be wiser - since this type of cancer can flare back up whilst being on treatment. My expectations are low: 18 months remission - as commonly cited on the Internet, before the disease progresses. My trust is in the biological companies designing a monoclonal drug that can attach for longer to the cancer cell than Mabthera. I thought I would give you this overview, because in November, I drafted my will and scaled down my business. I thought that it is the end of the line. However, I am feeling relatively good, and with a little hair returning on my head, my eyebrows and eyelashes - I feel a bit more normal. Some advice with regards to food: boil your water, dont eat pepper or yoghurt (keep your white blood cell count up); drink a lot of water, eat watery fruit that can be washed properly; keep your meals simple, take a nutritional supplement, eat your food cold. Don't fret if you develop either constipation or a runny tummy - if it is not viral you will get that next infusion. It comes with the turf. By now I now longer think about my disease day and night - I just want to get on with my life and the grace period that I may enjoy. I wish you all a recovery, and dont fear - take it day by day.

Wow - that really hit home for me. Thank you for sharing your story. It is quite similar to my dad's who was diagnosed in Oct 2005. He has gone through 5 CHOP + Rituxan cycles. His prescription was only 6 cycles.

After the 2nd treatment we went to Moffitt Cancer Treatment Center in Tampa, FL for a 2nd opinion. This is one of the cancer society's designated comprehensive cancer network which means its one of the best. I wanted a 2nd opinion because I felt like his oncologist just going to treat with chemo with Rituxan and that was it. Like you said remission is less than 2 years and I can't settle for that.

Our doctor at Moffitt recommends that patients with MCL should have Stem Cell Transplantation immediately after the chemo is finished (whether they are in remission or not). A lot of doctors think it is an unnecessary or dangerous procedure but this hospital that performs the surgery all the time will argue that.

So anyway - I'm sold on it, so now I just have to get my dad on board (even though he'll do anything I tell him because I'm daddy's little girl!).

Does anyone out there have more experience with Stem Cell that they could share? I don't really understand the process as well as the risks.
Thanks in advance!

I underwent the third CT-scan yesterday, showing mild improvement after six cycles over the previous measuring points 27/2/2006 (4 cycles) & 23/11/2005 (outset).

CT Chest:

Right para-tracheal 11 x 8 mm (previously 11 x 10 mm; 31 x 27 mm); Right internal jugular lymph node 10 x 4 mm (previously 12 x 11 mm; 18 x 14 mm; Pre-carinal lymph node 14 x 9 mm (previously 14 x 10 mm; 32 x 16 mm; Left anterior mediastinal lymph node at bracheocephalic artery 9 x 8 (previously 9x 8 mm; 19 x 17 mm)

CT Abdomen & Pelvis:

Right peri-pancreatic / para-coeliac nodal mass 27 x 22 mm (previously 26 x 24 mm; 45 x 39 mm; Left para-aortic at renal hilum 28 x 24 mm (previously 32 x 25 mm; 54 x 46 mm;
Mesenteric lymph node mass at aortic bifurcation 36 x 23 mm (previously 50 x 26 mm; 90 x 41 mm)

The CT scan did not include the head and neck, which according to my oncologist had scrunk within reason by cycle 4.

My oncologist has once again recommended nine cycles of CHOP + R, following the slowdown in treatment. However, a scan of the left ventricle of my heart (MUGA test) confirmed that Doxorubicin has lowered the ejection fraction to 48% - on an accum. dose of 300 mg. This drug has been replaced by cisplatin during my seventh infusion. It is no sweetie either, and requires at least 2 litres of fluid intake to lessen the impact on one's kidneys.

Just before infusion, I had a dreadful migrane-like headace in the back of my neck. Took migral and pain tablets. However, the positive spin is that the migral helped the inflammation I have experienced as a result of the vein fibrosis - noticible when you turn your wrist and the muscle feels taught and sore.

So, two more chemo cycles + R to go. The picture ahead: maintenance therapy utilising Mabthera apparently every two months. Would like to know how many patients out there have received maintainance therapy instead of opting for a Bone Marrow Transplant.

Next week, I am having a port inserted - something I suppose I should have done from the outset.

Dear Susanjhb, I praise and thanbk our heavenly father for your attitude. After undergoing all that you have. I was Dx. with terminal follicular lymphoma stage 4 last Oct. Have had 3 surgerys and just had a port inserted to begin the Rix. & Chop tx. Praise the Lord we had answer to our prayers. For the burning in my abdomin had decreased so. They have delayed chemo until after the PET scan. The tumors were blocking my bile from gallbladder and liver from going the rt. path. Instead it was backing up into my stomache. In turn irritated the whole lining of my stomache. I take 3 different medication to help decrease the inflamation. On a scale of 1 to 10. The pain was 8 to 10 plus for several months. But PTL after attending awomans conference at local churhc. I realisedthe pain had decreased to a one. PTL. So please dont give up . Just continue to pray and keep God first. God does answer all prayers. But in His Time not ours. That took me awhile to get through my little pea brain.lol Cancer is a terrible disease but we must not let it control us. Your friend Carla