Start of treatment

Hi NeilT and a warm welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Lymphoma groups. 

I don’t have Mantle cell lymphoma but I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Non Hodgkin’s Lymphoma eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.

You have done very well to keep treatment free for 5 years but I am sure you will be fine during treatment,

There are many treatments and combinations and Rituximab, Bendamustine and Cytarabine are just some that are available but these treatments are always chosen to fit your condition and how it is presenting.

I can only relate to Rituximab as this was part of my R-EPOCH….. I had over 750hrs of my regime back in late 2013/2014 and honestly I did well during it all and this was with me having 6 cycles that had me in hospital 6 nights/5 days on my 2 IV pumps 24/7 for over 120hrs each treatment.

Lets look for some of the group members to pick up on your post and give you their first hand experiences being on this treatments.

I have had a lot of treatment over my years See my story so when it came to making choices I always asked my team to recommend the best route for me but at the same time it is important to way-up the side effects of each and the length of recovery.

I will say that I spent many weeks in hospital with other men in their 70s and 80s who went through similar treatments and they did well and are still doing well years in.

As for getting yourself ready for treatment you may find this link Top Tips for the day of your Chemotherapy helpful as it is a collection of tips from folks who have the treatment T shirt.

Always around to help more, answer questions or just to chat

Thanks Mike, I'll have a look at the things you advise, I feel a bit better now having heard from you.

Cheers, Neil

Honestly it is often said that having a Lymphoma diagnosis is one of the better evils when it comes to cancer……. any cancer diagnosis is pants (granddaughters words) but from my experience and having walked with a number of good friends who had different types of cancers and who are no longer here now I tend to agree with the thought.

Mantle Cell is in the High-grade non-Hodgkin lymphoma group of NHLs and when it kicks off and becomes aggressive it then needs to be treated in a reciprocal way….. but the treatments available are very effective and can do the job.

All the Bold/Italic links are taken from the Lymphoma Action website. Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.

They run regular Support Platforms..... I highly recommend these groups as there is nothing better than talking with other who have walked the journey.

They also have a great Lymphoma Action Buddy Service where people can be linked up with someone who has walked the same treatment journey.

They also have a Lymphoma helpline on 0808 808 5555 where you can talk with someone and get support - open every week day from 10 till 3.

This group is always available to get support or just to have a chat.

Hi Neil - my husband was diagnosed with indolent MCL in 2019. In 2020 it became aggressive and required treatment. He received VCR-CAP over 4 and a half months. This consisted of Velcade/Rituxan/Cyclophosphamide/Adriamycin/prednisone and proved very effective. His PET scan showed complete response by the end of treatment. He is receiving Rituximab as maintenance treatment every two months and leads an active life, walking about 4 miles a day.The only down side is lack of an effective immune system but we get treatment straight away for possible chest infections etc. caught Covid this year but he was supported superbly (as an outpatient) with anti viral drugs. There are so many new drugs and trials out there now too. I’m sure you’re feeling apprehensive but there is life with MC - don’t read all the rubbish printed by ‘Dr Google’ - stick to this site.  The journey is daunting at times - hair loss/tiredness but we still managed to get out and about and meet friends etc. Good luck with your treatment - you’re one year older than my husband. 

Hello Neil...I too went to doc with large lump, though mine was spleen. I looked like the bloke in Alien.

I was immediately started on the Nordic Protocol, or r-chop, which you can Google.

I had some bad reactions during the 6-cycle treatment, which were a bit scary; very high fevers. But I came through it thanks to the marvellous doctors and nurses.

They discharged me and put me on maintenance Rituximab- and back came the fevers.

So I was taken off maintenance and am now on a wait and review every three months schedule - and all has been fine for nearly three years now - huzzah. 

Having said that I'm currently being treated for a blood clot in a lung, which apparently is a consequence of poor immune system. But I'm still here, still enjoying life and heading for my 79th birthday.

Take heart. All very best wishes - 

Thanks everyone, I knew the day would come sooner or later, but the longer it took, the more i thought I would get away with it!

Cheers, Neil 

Hi NeilT, I was diagnosed with Mantle Cell Lymphoma in 2020. When I was 72. I was offered a similar choice of treatments and, after discussion with my consultant, opted for the R-Chop chemotherapy. This was on the basis that although it was a more aggressive treatment, my overall health and fitness was good and I would be able to manage the treatment. i have no regrets in choosing R-Chop, as I was in full remission following the 6 x 3week cycles of treatment.

I cannot pretend it was easy although it was worth it. If you do opt for R-Chop (based purely on my own experience) you might expect the following:

- Feeling very fatigued, more so with each successive course of treatment.

- Some 'dark' days when you might feel quite depressed (although it passes).

- Brain fog, when it's difficult to think clearly and you have. no enthusiasm for anything.

- Sleeping a lot ( Go with the flow; if your body needs sleep, then sleep)

- BUT amazing care and support from the medical staff who are treating you.

Also, be very organised about managing your medications. I had one day at the hospital every 3 weeks for the infusions, then about 12 days when I had possibly 5 - 7 different medications to take, all at different times of the day. A tick list and medicine chart was essential!

And, always take the anti-sickness tablets following the treatment in the hospital (trust me, you'll need them)!

So yes, for me it was overall a tough 18 weeks but I came out at the end with full remission. The amazing support I got from my wife, the medical team and the specialist nurses meant I was never on my own and always had someone to talk to if needed.

To put matters in context, I've now just had two full knee replacements (confidence in my future) and am recovering but oh boy, and I thought R-Chop was tough!,

Discuss with your consultant and whatever your decision, I wish you well.

Thanks Hopalong, that's great advice, I'll print it out and refer to it as I go along!

Cheers, Neil

Hi Neil, good to hear from you. I wish you well with your treatment.

One other thing that I found useful was that I kept a daily journal throughout my treatment. Each day I noted down which medications I'd had and how I'd responded and felt during the day. That meant that as I progressed through the successive cycles of my treatment I could refer back to the previous cycle and It would give me an idea of what to expect, day by day. Of course, things varied a little although overall it was a useful 'tool' in my recovery.

And, of course, enjoy every moment of the good days (of which there are plenty).

All the best and feel free to keep in touch.

Trevor ((Hopalong).

Thanks Trevor,

I saw my consultant yesterday and opted for the three drugs (R-bac) and expect to get started within a couple of weeks, I had a bone marrow biopsy this morning so it's all go.

Cheers, Neil