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Hello, Mantel cell patient.

pudintane
Posts: 9
Joined: Feb 2012

I was diagnosed the 3rd of January with stage 2 Mantel Cell. I had 3 lymph nodes removed just before Christmas. Colonoscopy and Bone Marrow came in clean. The Pet Scan showed more affected Lymph nodes in the same right groin area. I started treatment on January 24th. Rituxin, Velcade, and Cladribine. Second round starts Feb. 14th. 4 scheduled at this time. My Oncologist ruled out radiation saying that because of the pelvic area radiation may inhibit bone marrow function so at this point I am having Chemo only. The shot I got to boost the white cells was the worst so far, making me very sick for seveal days. I do not remember it's name...I call it something unprintable. Feeling pretty good this week. Better then I did in December. Would appreciate sharing info and experiences with others.

Pudintane

Steve_4133's picture
Steve_4133
Posts: 7
Joined: Nov 2011

I was diagnosed Oct 18, 2011 with Mantel Cell. Same as you everything clean except lymph nodes. My oncologist put me on R-Chop and had my first treatment Nov. 11. After my third treatment in Jan he ordered a CT scan and it looked very good. He has me set to have 6 treatments and then have a stem cell transplant. I have been lucky and I haven't been sick from chemo just very tired and at times constipated. I don't hear much about Mantel Cell. I wish the best for you and keep posting..
Steve

pudintane
Posts: 9
Joined: Feb 2012

Howdy Steve;

Appreciate the reply. What are your treatments like? I have to go in 4 days in a row. the first day takes 7 hours and the other three, 3-4 hours. Then I get 2 weeks off. Pretty much shoots my week and I work 3rd shift. No sick time so I'm using up the vacation time....treatment and vacation are going to run out about the same time. So much for a caribean cruise. So far I am able to work part time during the treatment and full time in between. I know what you mean about the constipation. I'm stocking up on prunes, ducolax and Herbal teas for the next go round. Bran muffins. Some diet.

Chuck

Steve_4133's picture
Steve_4133
Posts: 7
Joined: Nov 2011

My treatments are R-Chop and every 21 days I go in for chemo and it takes about 7 hours. The first week is pretty much shot because I'm tired and the meds I take. After that the third week I start to feel OK and then it starts all over again. I don't work - I took a early buyout where I worked when I was 55 and I'm 59 now so I had 4 years before this started. It is very expensive even with insurance. Good Luck in your treatments.
Steve

po18guy
Posts: 237
Joined: Nov 2011

Welcome! Doctor's treatment plan sounds good, as the marrow is crucial to allowing your immune system to function for the rest of your body. If you are anything like I was, you now have a veritable pharmacy of anti- drugs: anti-biotics, anti-fungals, anti-virals, anti-anxiety, anti-emetics, etc. I took something like 30 various prescription capsules, tablets, caplets, gel-caps, you name it, each day. Its a wonder that we can continue on such a diet. If you have done some Googling, you know that there is increased hope, even for the rare MCL. I am being treated for a rare sub-type of T-cell lymphoma. If not for a clinical trial, I would not have finished summer, 2009. Yes, hope is on the rise. All the best to you in your journey.

pudintane
Posts: 9
Joined: Feb 2012

Po18

Thanks for the reply. I am for the most part pleased with my Dr. He has been in contact with a Dr T. Miller from the university in Tucson. Dr. Miller is supposed to have a background in treating MCL. There is always that doubt that creeps in and makes you wonder if this is the right treatment and if there is something "better" you should be doing. So far I am taking some nausea pills, kidney and vitamn c and b supplements,Tylenol and enough Steriods that MLB scouts have been coming around. I really had a reaction to the rituxin, BAD hives, hence the Steriods and Anti-histimines. I love your subject line. It is difficult to accept this as normal, then I feel the Port in my chest, and I am sure it is not, Normal. Still too new.. working on it

Chuck

po18guy
Posts: 237
Joined: Nov 2011

Chuck, since MCL is so rare, it might behoove you to obtain a second opinion on both diagnosis and treatment. A second opinion saved my life. I am treated at SCCA (Fred Hutchinson) in Seattle. Although peripheral T-cell lymphoma is also rare, it is more common than MCL. Thus, I would encourage you to remove all doubt and seek a second opinion. As well, the rarest of the cancers are often treatable by clinical trial drugs. Oh, did I mention that I am also alive only because of a clinical trial? Yes. In my case, an experimental drug put me in complete response and has kept me there for almost three years - three years that I would not have had without it. I see that SCCA has over 200 clinical trials going. Not that many facilities offer clinical trials, and most oncologists shy away from them because of lack of resources or the hassle of administering them. That is a shame, as lives are being lost that might have been saved. I have a standing offer: If you happen to come to Seattle for a second opinion or treatment, I will meet you at the airport and drive you to the facility.

anliperez915's picture
anliperez915
Posts: 742
Joined: Sep 2011

Hi Chuck and welcome to the board, I'm fairly new here and I also just started Rituxan. So I don't have a lot of words of wisdom to offer you, just wanted to welcome you! I was diagnosed in Aug. 2011 with SMZL stage IV, spleen, liver and bone marrow involvement. Hope you do well in your treatment and take care.

Sincerely,
Liz

Susan55
Posts: 16
Joined: Mar 2012

My husband was diagnosed December 14, 2011 with MCL also like you in spleen and bone marrow is going to start the same treatment. Any information you can get us would be much appreciated.

anliperez915's picture
anliperez915
Posts: 742
Joined: Sep 2011

Hi Susan, I hope your husband does well on this treatment. I had a little trouble with it but you know everybody is different. On my first week I had extreme pain from my lower back down to my bottom. Second week I had rash, third week I got (angioedema) excuse my spelling, and by the fifth week I was very tired. I've heard from other people here that they didn't have any side effects so hopefully that will be the case of your hubby! I will be having a bone marrow done and scans in a few weeks just to see if the medicine worked!
I wish you all the best to you and your hubby! Take care

Sincerely,
Liz

Fran_57
Posts: 1
Joined: Mar 2012

Hi Pudintane, I'm newly diagnosed with Stage I, but the lymphoma is in blood vessel of the eye. CAT scan showed no where else with no enlarged lymph nodes. I have Scleroderma and Sjogren's auto immune diseases. Oncologist started me on Rituxan last week. Will have second treatment tomorrow - possibly will add bendamustine chemo drug to my treatment. I, also have PBC and auto immune liver disease, stage II. I'm very apprehensive but feel good about where I am being treated. My internist asked why they didn't operate to remove from the eye or at least do a PET scan which would show microscopic views of blood vessels. Would appreciate hearing from anyone with Mantle Cell. I doubt they can use radiation because Scleroderma is a fibrosing over-reaction disease and radiation would cause problems. Hope you are still feeling better. I am 77 years old.

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