Hi GB-Biff

Welcome to the forum although I'm sorry that you find yourself here. 

Mantle cell lymphoma is an uncommon cancer and although we've had some members in the past with this diagnosis, I've looked through the forum and can't find anyone active at the moment who has the same. I wonder if you might be able to make contact with someone via a more specific cancer support group such as Lymphoma Action. I believe that they have an online community as well as a buddy service and other  support options. 

If you'd like to speak to one of our team of nurses then you'd be most welcome to give them a call. They're available on 0808 800 4040 (Monday to Friday 9am to 5pm). 

I hope this helps. 
Best wishes, 
Jenn
Cancer Chat moderator

Hi.

My dad has just been diagnosed with mantle cell lymphoma. He is 50. I am so sad and constantly crying. My dad is so stressed and so down. He is due to start his chemo on wednesday. He will have the same treatment as you other than the stem cell. The doctor said he will have that at the end of chemo. How was your first chemo?  What is your stage? What should my dad expect from first treatment? Any info will be great. Hoping you will get better soon. 

Hiya 

I'm stage 4 mantle cell lymphoma had my first chemotherapy Friday 12th July, next 5th August had 2 off days with constipation and just knackered , felt a bit wierd on the steroids, had a reaction from the treatment, breathless, went hot and felt sick all in about 10 minutes, absolutely fine after that. Everyone is different but tell him not to worry its not worth it x

I'm trying to keep positive and upbeat, I think that's half the battle, he will get or can ask for loads of useful information from nurses or calling McMillan, he can do this x

Thanks for the information GB-Biff.

My dad has very advanced and intensive disease the doctor said. It is in many pIaces and the cysts are very big. Seen the CT scans and couldn’t beleive it  I go to every appointment of his.

When you say you were breathless, how did the nurse/doctor deal with it? Are you feeling okay now? xx

Hi k n 

Re breathless, stopped the treatment for a while and gave ne something to stop the reaction, like I said it was all over in 10 or so minutes and then they started me off again, it all went well after that. 

Hi

I was diagnosed with Mantle Cell Lymphoma around august 2019 and put on a watch and wait list but I am due to start the same treatment as yourself in January 2020.

I would like to know what to expect (I have read alot of differing stories)

I am 67years old but fit and healthy apart from the MCL

Any information would be apprciated

Dibsey

Hi Dibsey & co.

I was diagnosed with MCL in February 2019 at the age of 65.  I had been very fit and healthy until that point.  I completed the chemotherapy (Nordic Protocol) in July.  Overall it was not as bad as I was expecting.  I was sick at the end of the in-patient treatments, which were those including cytarabine.  The sensation was rather like a bad hangover.  I had very slight mouth soreness at the end of the first chemo, but none thereafter and nothing that seriously affected my appetite.  I actually gained a few pounds in weight during the treatment.  I couldn't face hot drinks for a couple of weeks early on but that did not last.  Constipation is a bit of a problem, so take Laxido before you suffer.  You need to monitor your temperature carefully and report to hospital promptly if it is outside the defined limits.  This happened to me twice, and on one occasion I was kept in overnight and given an intravenous antibiotic.  I did feel lacking in energy but otherwise carried on with life as normal, although I had to give up work (teaching) due to the increased risk of infection.

Patients with diabetes or heart issues are likely to have more issues.

I am scheduled to undergo an autologous stem cell transplant next week (I was harvested in August, but then allowed a break to go on holiday).  I will report back after that.

Hi GB-Biff

How are you feeling? Have you started your SCT? 

Hi Welshenglish.

Did you have R-CHOP and R-DHAP? My dad is currently on that treatment. His last R-DHAP is due in 3 weeks then STC. What happens after last chemo? I just want to get some info regarding STC please.

I hope everything will go smoothly for you.