Anyone else have Mantle Cell Lymphoma?

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.

@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

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

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

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

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

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?

@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?

I'm 64 and was diagnosed with Mantle Cell Lymphoma 2.5 years ago, stage 1. I'm still on "Watch and Wait", or "Waiting for the hammer to drop".
At my last appointment, my oncologist said the lymphoma is progressing but not enough for treatment. I go again for blood tests in 2 months.
It is scary, but I'm grateful to be at stage 1. I'm afraid of the treatment and of the disease.
My dr. said when the time comes, he will be able to get me into remission, but keeping me there will be a problem.

Hi - I'm 61 and was diagnosed with Mantle Cell Lymphoma a little over two weeks ago. I'd had swollen lymph nodes (largest 1.5cm) on both sides of my groin for 4 years with no real B symptoms (although very occasional night sweats around my neck/chest area). During those 4 years a myriad of doctors did CT's MRIs, ultrasounds, special blood tests etc. The 1.5cm node never got bigger during that time and all the doctors I saw said it didn't have the characteristics of anything malignant. In fact, when I would palpate it myself, it sometimes felt swollen and sometimes felt smaller which was strange.

My pulmonologist asked me to have the node biopsied (complete dissection) 2 months ago to rule out sarcoidosis. To my shock and dismay, the results came back Mantle Cell Lymphoma CD23+. Had a PET and bone marrow biopsy and it showed it was isolated in the right groin lymph nodes and had not spread yet. Doctor staged it at 2. It's really scary and I'm also terrified of both the treatment and disease.

I'm overseas so it makes it even more difficult to cope. The oncologist is recommending Rituximab and Bendomustine for 6 cycles (6 months), and depending on how I respond to it, possible maintenance therapy with Rituximab.

I called two Lymphoma oncologists in the US who a friend referred me to, and the one from MD Anderson said that at his hospital they probably would even offer to treat it at the moment and advise Watch and Wait only. The other oncologist also said he might recommend Watch and Wait or possibly localized radiation. But my fear is watch and wait for what? If it's eventually going to turn agressive and possibly spread, it would require more agressive treatment.

Can I ask you, is your MCL 23+ or 23-, what area of the body did they find it, and was it an incidental finding or did you have symptoms?