hi everyone, I was diagnosed 6/7 months ago with Mantle Cell and can't tell you how shocking that diagnosis was, it was blurted out that I had cancer everywhere by a radiologist who should not have told me. I drove home from the hospital stunned. The hardest thing was telling one by one my children. Since then I decided to be grateful for every new day and recently went to London to see Phantom of the Opera. Getting my head round all the terminology was a bit confusing at first, but getting it now. I am on Ibrutinib and not strong enough for Chemo, and later will be offered Rituximab but I am not sure about using both drugs as I have a very sensitive reaction to drugs. I have been on Ibrutinib one week. I have already discovered I am allergic to Prednisolone and next week go to an allergy clinic. I have reacted to other drugs in the past with an allergic response, so hoping that Ibrutinib alone will be enough to put the Lymphoma at bay. Just started going to a hospice in the day to do art with an art psychotherapist and had my first visit with her which was good. Would like to hear from others of their experiences with Ibrutinib and how long others have been in remission. I am hoping that I won't have any serious side effects.
Hi Moonchild 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 with a rare, incurable but treatable type of Non Hodgkin’s Lymphoma Stage 4a so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.
I have not had Ibrutinib...... but over my main treatment I must have had over 700hrs of Rituximab. I also have had bad a few reactions to some drugs over the years but had no problems with this one..... you can see my long story if you hit my community name.
Do check out the Lymphoma Action website. Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos and run regular Lymphoma Online Support Groups for patients...... 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 Sharon or Nic will be on hand to give you some support - open every week day from 10 till 3.
Always around to help more or just to chat
Good morning Moonchild, my profile is not the best selection for sleepless night reading LOL.
Sorry to hear about your ‘other’ medical challenges….. this is often the case with Lymphoma and often found due to being checked or treated for other health conditions.
The treatment of Lymphoma can be challenging as one size does not fit all but on the whole it tends to be effective but with over 60 types and subtypes of Lymphoma the challenges are that the same treatments don’t work for all presentations.
These treatments are designed to break down growth areas….. and this goes for any area I n the body so let’s look for this to do the job.
Lease do not suffer in silence with regards to side-effects, call this in to your Specialist Cancer Nurse (SCN) as there are tools that can help.
It is very important that you keep very well hydrated so you do need to aim to drink a good 2 Litres of water every day as this helps flush the toxins from your body and protects your kidneys.
Do check the Lymphoma Action regular Lymphoma Online Support Groups, I run one of the Scottish Groups and it’s a great platform to ‘talk’ and get support.
I see you have sent me a Friend Request so I will accept this and as always I am around to help as best as I can.
The important things is to keep on, keeping on and live in the moment and not waste today stressing about tomorrow .
((hugs))
