Welcome to the Mantel Cell Lymphoma group.

Looks like this group is pretty inactive.

Hope  I can get insights from people with MCL

I have recently been diagnosed with MCL -Stage 1

Looking for support and insight as to what I am looking forward to.

Mostly concerned with quality of life and vitality while in ChemoImmuno therapy with Rituxan and Bendamustin.

WilI be sick? Will I be able to live active athletic life?

What does the end of life look like?

Hi Huntski and welcome to this corner. I am Mike Thehighlander and I help out around our lymphoma groups, I have a different type of NHL but over my 22 years journey I have experienced a lot of the treatments.

Yes the group is on the slow side but this reflects that MCL is on the rare side of Non Hodgkin’s Lymphomas so not as much traffic through the group but let’s see if any of the group members are looking in.

The R&B treatment you are having is a very effective tool and provides good results.

Will you get sick?…… this is different across everyone. My initial treatment was different from R&B resulting in me having 6 cycles totalling 750hrs of chemo, so very full on and yes, I felt sick..... but never was…… But I was very ill and sick with my later treatments (Stem Cell Transplant) 

Will you get back to an active life?….. Based on my journey I say yes. I was 59 when I started my main treatment but I had to have more treatment but I am now 66 and as active and healthy as any other 66 year old.

Prognosis?……This is take from the Lymphoma Action website where you will find lots of Lymphoma Specific Information, great videos and also details about our regular regional online Lymphoma Online Support Groups and indeed a great Lymphoma Buddy Service.....

In most people, mantle cell lymphoma is fast-growing and treatment needs to start straightaway. First-line treatment is usually successful at putting your lymphoma into remission (shrinking the lymphoma or getting rid of it completely) but the lymphoma almost always comes back within months or years, and needs more treatment.

.....so the prognosis is good unlike many other types of cancer.

My type of NHL is incurable and was at Stage 4 when I started my main chemo but against everything I was told over my early years that I would never be in any remission longer than 6-9 months...... I am now 5 years in remission. and living the dream. You can hit our Community Names and see some of our stories

Happy to chat at any time.

Well... It's not as much fun as they said it'd be.

I've had six bouts of chemo and three of rituximab: and contrary to popular belief, I'm still here.

You'll manage. One just does.

Ps you raise a good point about it being quiet here. I think either everyone died or there's not much one can say :-) 

The Highlander,

Thanks much. very encouraging actually, Since just retired in July, I have many bucket list goals.

I'd like to achieve and be in reasonable shape to achieve them. Going to Mayo on the 6th and lots of investigative procedures scheduled shortly thereafter. I'll touch base when I know more.

Huntski

Seasidepeter,

Thanks for reply.

I can't believe I am on the verge of the dreaded Chemo.

I hope recommended R&B cocktail is more elegant than harsher broader scale traditional  treatments.

The journey begins...

Huntski

Hi Huntski, 

I had the same combination of treatment as you will have. I was stage 4 and on watch and wait prior to starting. The treatment did a great job of shrinking and getting rid of most of it. I then had a stem cell transplant using my own cells. I am now in remission and attend every 2 months for maintenance rituximab.

Everyone responds differently to the treatment but I can tell you the anti sickness medication is brilliant. My main issue was my blood count recovery after my first dose. My other cycles after that first one were fine.

I would say, don't be thinking about end of life, it's normal that you do but it's not helpful. Be positive, don't read much online except info on official Lymphoma sites and get yourself a good thermometer. I can't remember how much more info I have put on here but click on my name and there will be a bit on there. All the best!