Mantle Cell Lymphoma

Posted by roberthall0452 @roberthall0452, Jan 29, 2019
@roberthall0452

Hello lottajoy,
My Experience: I was diagnosed with MCL in 02/2016.
I was admitted to the hospital with a blood platelet count of 20 after feeling fatigued. My treatment consisted of 5 days in hospital with chemo each day then I was released and had chemo once a week for 8 weeks. The chemo consisted of Rituxin and another chemo that I don't recall, looking for the info but cannot put my hands on it but this treatment worked and I have been in remission for 18 months. I recently went into relapse and am now on Imbruvica and it is showing good results. I am fortunate that insurance is covering this drug because it is very expensive. I did not have any trouble taking the chemo which seemed like a walk in the park when comparing it to the radiation I experienced in 2013 for esophageal cancer which is completely behind me. Please make sure you have a doctor that you feel very good about, it took two trys for me. Look forward to seeing where you go with this and will be watching for you. Best Wishes!
I am a 74 year old male in otherwise good health and I am active in tennis and working out at the gym, plus I watch what I eat.

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I'm 74 and have stage 3. I've been on retuxin for 3 1/2 years and have had alot of hand skin problems. Seems like everyone I'd off retuxin after two years. Have a little skeptic
About my doctor.

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@lottajoy

My chemo treatment is 2-part: A and B. They alternate every 3 weeks until I have had 3 of each. Part A is done as an out-patient but takes 7-9 hours. I have to stay in the hospital for 3 days when I have Part B. I am not a patient at Mayo, so I don't know how they do it.

Part A:
Cyclophosphamite
Doxorubisin
Viacristine
Rituxin

Part B:
Cytarabib
Rituxin

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What stage is it in.

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@lottajoy

University of Wisconsin Hospital. By the time the cancer was found, there were a lot of lymph nodes in my abdomen and chest affected. He said since I am young (58) and in good health, they were prescribing an aggressive treatment.

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I am stage 3 and am on retuxin for 3 1/2 years.

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@sweede536

Confused. I've been on retuxin for 3 1/2 years. I've had many side effects. Esp. With my skin.

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@sweede536 I just found this website that may be of interest to you:
https://www.mayoclinic.org/drugs-supplements/rituximab-intravenous-route/side-effects/drg-20068057
The article does mention a red rash and suggests that you bring this up to your doctor. Does your doctor know about your rash? What does he/she say?

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I've had this four years now. Its in remission . I take two infusions every 6 weeks. One is retuxin and IVIG.
I was just told that due to my type cancer I won't get a vacine forccovid'19. Take about starting your new year hearing this. Anyone hear any good news about some to protect us.

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@sweede536

I've had this four years now. Its in remission . I take two infusions every 6 weeks. One is retuxin and IVIG.
I was just told that due to my type cancer I won't get a vacine forccovid'19. Take about starting your new year hearing this. Anyone hear any good news about some to protect us.

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@sweede536 I believe that your post may be of interest to any number of people in the blood cancer community. I too am in remission and was given the go ahead to get the vaccine. Since then my husband heard part of a report that contraindicated this opinion. It had to do with vaccine attachment to outer cells. Just as my immunotherapy did. That alone hasn’t given me concern, but simply indicated another question that I need to ask. The almost daily change in research discoveries makes it important that we continually look for those appropriate questions. Just as we always need to do. Living in fear is not an option. Living smart is. Please let us know if you were given rationale behind that medical opinion. Peace, Nancy

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@1nan

@sweede536 I believe that your post may be of interest to any number of people in the blood cancer community. I too am in remission and was given the go ahead to get the vaccine. Since then my husband heard part of a report that contraindicated this opinion. It had to do with vaccine attachment to outer cells. Just as my immunotherapy did. That alone hasn’t given me concern, but simply indicated another question that I need to ask. The almost daily change in research discoveries makes it important that we continually look for those appropriate questions. Just as we always need to do. Living in fear is not an option. Living smart is. Please let us know if you were given rationale behind that medical opinion. Peace, Nancy

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Thanks for answering. Having battled this dreadful disease for over five years then hearingva vacine won't work with me hit me hard! I will check on what you said. God Bless
Dennis

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@sweede536

I'm 74 and have stage 3. I've been on retuxin for 3 1/2 years and have had alot of hand skin problems. Seems like everyone I'd off retuxin after two years. Have a little skeptic
About my doctor.

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I know, I'm 75 now and had great skin. Now it looks like I'm 100 and I take pack of bandages with me on trips as I tear or cut very easy. Can't believe how thin my skin is.
Dennis

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@sweede536

I am stage 3 and am on retuxin for 3 1/2 years.

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I'm stsge 3 and have been on treatments for 5 1/2 years. My skin now is so thin I have to take a pack of bandages with me where ever I go. I cut and tear like wet paper! Retuxin for 3 1/2 years
Dennis

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I'm in stage 3 for 5 1/2 years. Retuxin fir 3 1/2 years. Im75 and its changed my skin on my hands to look like a 120 year old! I take a pack of medical supplies where ever I go as my skin tears and cuts like wet paper!!!
I was told by my Gzp that I most likely will not be able to get the vacine as my system will not except it. Will see my onacoligest Friday to see for sure! What a bumber!!!
Dennis

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noticed a lump on my shin. Got a biopsy and was diagnosed with b cell mantle. Took 4 rounds of chmo until my white blood cells got to low. Had a scan and found the chemo did nothing. Lump has almost tripled in size. Started radiation. Am now done 12 out of 20 sessions and the pain of all the sores from burning is almost unbearable. Is it worth keeping up with the rest of the radiation as no noticable difference?

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@lknipple

noticed a lump on my shin. Got a biopsy and was diagnosed with b cell mantle. Took 4 rounds of chmo until my white blood cells got to low. Had a scan and found the chemo did nothing. Lump has almost tripled in size. Started radiation. Am now done 12 out of 20 sessions and the pain of all the sores from burning is almost unbearable. Is it worth keeping up with the rest of the radiation as no noticable difference?

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@lknipple, this sounds very discouraging to say the least. I'm sorry to hear that standard treatments have not shown the results you and your team were hoping for. I'm hoping @roberthall0452 @maxwell123 @lottajoy @sweede536 will return to share their experiences with you.

lknipple, what type of chemotherapy did you have? Has your oncologist talked to you about other possibility like targeted therapy or immunotherapy or stem cell transplant? Are you being treated at a major cancer center?

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