Mantle Cell lymphoma survivors

Basquegrl

I am a Mantle Cell Lymphona cancer survivor I! I was diagnosed in 2021 went thru chemo , was unable to do stem cell transplant due to two unsucessfull stem cell extractions and will be starting my maintenance plan soon. Is there anyone that has gone thru this recently?

GmaVee

I was just diagnosed with MCL, went to the oncologist yesterday, not sure what my treatment plan is yet, but it sounds like three months of mild treatment and then three months of awful treatment and in the hospital for some of it. Then after 6 months they will decide what the next step will be. So far, I have a low volume of cancer cells and feel fine, but I understand that the treatment is the same whether you caught it early or whether have an advanced case. I did a bone marrow biopsy yesterday. That was not fun, but it was manageable. Worried about when I have to do the IV's of cytarabine at the hospital and about how many times I will have to have my blood marrow tested. I'll try to update from time to time. I would be interested in hearing about your experience.

Good Luck and Good Health.

Basquegrl

Sorry for the late reply.... but my experience with MCL was a little different. I was having stomach pains which I thought was just acid reflex appeared to be more. I ended up in ER with severe pain but of course more test they did more they found until I was diagnosed few months later with MCL. They did not do a bone marrow biopsy prior to my treatment. I was told prior to chemo I would have 6 treatments 3 at City of Hope and 3 at the hospital. My body unfortunately had a different process in mind. I was only able to do 5 treatments due to the amount of damage it was doing to my body. When they say Chemo kills good and bad, they weren't kidding. I had a PETSCAN after my 5 treatments and it showed no trace of the cancer. I of course mentioned previously I attempted to do a stem cell transplant but was unsuccessful because the chemo destroyed my body, and they were not able to extract any stem cells. So, I am now on a maintenance treatment for the next 3 years. My experience was a little different from what I have been reading about MCL. The cytarabine at the hospital for me was the easiest and had the least side effects for me. The rest was the hardest for me. Hope my experience helped. Please reach out if you have any more questions.

Good Luck and Good Health to you too.

GmaVee

I have an appointment in 2 days to have a port inserted. Then two days after that I start my second session of chemo. The first day is a long day with Rituximab and the second day is a shorter day with Bendamustine. I have three (total) cycles of that and then I start with Cytarabine (which requires an overnight stay at the hospital) and then Bendamustine again on the second day for three cycles. Treatment cycle one was not too bad, I had a slight allergic reaction to the Rituximab with an itchy ear and ticklish throat, but I was able to complete the infusion. Bendamustine really hurt my veins (they still hurt a little bit) so I ?guess? I'm glad I'm getting a port. Not sure yet. It think after I complete the six treatment cycles, they will test to see what the next step is. I don't know yet if I will get a stem cell transplant, I think it depends on my test outcomes. FWIW, I apparently have an indolent cancer and a low volume of cancer cells. Sorry to hear that you were unable to do the ASCT. It must have been disappointing to find out that you couldn't. I am glad to hear that you are doing well though. The holidays are coming up so I imagine that I will stay closer to home, so I don't expose myself to the flu season. Did you have any other serious complications? Why were you only able to do 5 of your six cycles of treatment?

Hope you are doing well.

ShadyGuy

Just curious - did your care team make any mention of oral Bendamustine? Not sure how widely it is in use or if its relevant to your particular situation. I know one person who had great success with it against a different cancer - multiple myeloma. Believe it or not Google holds the patent for it. Best of luck to you!

GmaVee

Well, my port placement went well. It's still a little tender, but manageable. Since I have chemo on two days back to back, they gave me the option of keeping the needle in overnight, but I was worried about complications and/or being able to sleep with it in, so I opted to take the needle out overnight and get poked again the next day. Does anyone have any opinions on which option is better? I didn't have any real side effects from the B-R treatment except for a little headache. I think the harder stuff will come in 2023 with the ARA-C and then a possible auto stem cell transplant. I would be interested in hearing about anyone else's experiences with either the ARA-C or the ASCT.

An oral pill was not offered to me for the Bendamustine but I am on a clinical trial, so they have to follow those guidelines, so it probably wasn't an option.

Hope everyone is doing well. That's my update for now.

agavurin

https://csn.cancer.org/discussion/comment/1701237#Comment_1701237

I have a very similar situation to you - I always have them remove the port access if I am going home, even if I am coming back the next day - just a comfort at home thing. I have completed 3 cycles of B-R and have 3 more to go with very good results so far. My dilemma is whether to do the autologous stem cell transplant 2 months after B-R treatment is over or just go to maintenance rituximab every 2 months for 2 years (which I probably will have my port removed for that). Any thoughts?

GmaVee

Agavirun, it does sound like you and I have very similar situations. Except I will switch from B-R to Ara-C and Rituximab starting with my fourth treatment. I am fortunate to have the Siteman Cancer Center in my hometown so I feel like I am getting excellent care. Did you get a scan of any type after your third treatment? I think my doctor mentioned a scan after my third treatment. I too am struggling with the ASCT question. It certainly does not sound like it is an easy treatment, so that gives me pause. I will rely on my medical team's input when I get to that stage of the treatment, but I am probably leaning toward doing it. I am 66 years old and would like the longest possible remission period I can get on the first "go-round." I would love to hear about anyone's experience with the ASCT.

I have been reading about the ARA-C portion of my treatment and I'm getting mixed answers on one particular question. That question is....will I lose my hair? Basquegrl, I know that you stated that you found the ARA-C the easiest part of your treatment, which helps to calm my fears. Can you let me know if you lost your hair during the ARA-C treatment?

I wish the best to everyone going through this. It certainly makes you feel vulnerable and opens the door to anxiety.

Vivian

agavurin

Vivian,

I'm 61 years old; I live in Denver and getting treatment at UCHealth Anschutz Cancer Ctr. I had a PET scan after the second cycle of B-R which showed great improvement with cancer gone from some of the sites (I had many) and thus not changing treatment at this time. The B-R treatment is the "easiest" for our bodies as far as I have heard. The issue I have with ASCT is we are on the cusp of some new treatments, and there is a clinical trial currently being conducted that looks at ASCT versus 2 years of rituximab treatment. These are such new options there isn't any real data on remission timeframes. I just feel like I'm making a decision without all the best info.

Andrea

GmaVee

Can anyone share their experience with the medical costs associated with with MCL? I just started treatment in September 2022 and I'm just now starting to get the medical bills. So far, it's not been too bad, but the fear of the unknown is looming big. So I've got the fear of the unknown with cancer as well as it's associated cost. I'm on Medicare so I think I should be covered, but there always seems to be something that the hospital comes back to me to ask for reimbursement. Can anyone share? Thanks and Happy New Year!

Vivian

ShadyGuy

Do you have a medicare supplement plan?

Basquegrl

No I do not. I have a PPO plan.

GmaVee

I have a Medicare Advantage Plan through UHC, not the supplement plan through Medicare. Darn it.

ShadyGuy

I have a Cigna advantage plan and along with medicare it covered most everything for my initial treatment for fnhl and my relapse. A close relative who recently passed from a different form of cancer had United HC and he ran into some kind of limit as to where he could get treatments but it was good coverage. I would say don’t worry about it. You are good. Just try to focus on getting better. When I was in hospital earlier this year I thought the nurses were being kind by constantly offering me ice cream. I was later billed $12 for each ice cream bar. It was funny. All my best.

GmaVee

Thanks Shady Guy. It's good to hear from someone who has actually been through it. The doctors are very focused on saving your life (thank goodness) but they are removed from the actual cost. I'm prepared to pay my deductibles and co-insurance, but was worried about having to pay for something huge. And the bills don't come for three months, so it takes a while to know what you are really going to pay.

Thanks again and I hope you have a healthy 2023.