My husband was diagnosed with MCL in July of this year. He started RCHOP and RDHAP chemo which after 4 sessions had reduced the cancer quite dramatically. During round 5 and 6 he started having various issues, fluctuating temperature, etc which ended with him in hospital. A source of infection couldn’t be found. He’s then had a DVT, dramatic weight loss, fatigue, coughing constantly and several blood transfusions due to his low count. The decline in him and his appearance is dramatic. Consultants have done another PET scan as are now pretty sure the treatment is no longer working and are talking quality of life over further treatment. He was due to start his stem cell transplant mid Jan but that has been cancelled. I’m heartbroken, I can’t believe this is happening to us. They have talked about ibrutinib which will give him 12-18 months at best but looking at how weak he’s become I feel this is overly optimistic. Anyone else been through this? This cancer is so rare so really feel like there is no one to talk to that knows how we feel.
Hi and we one to this corner of the Community but sorry to hear about your husband.
I have another rare type of Non Hodgkin’s Lymphoma so do understand the challenges that this brings.
I was diagnosed way back in 1999 and back then I was classed as incurable but treatable but world never be in remission.
I am sure that his team will be doing all that is available to make improvements and Ibrutinib is a very effective drug so let’s look for this to turn the tide on this.
When you say Stem Cell Transplant (SCT) is cancelled, is this permanently or until he is on a better position to be presented?
SCT is very demanding and at times very dangerous so they may reconsider this further down the line.
In late 2013 my condition became very aggressive so for me the only treatment left was Donor SCT...... I actually had two as the first did not work.
It was a last roll of the dice as I was given a few years if it did not work and I did go into SCT with active cancer as there was nothing to lose.
Do keep posting as this will help you as it’s a space for you to unpack and talk with others who do understand.
Good to hear this news, you have to expect the unexpected on the Lymphoma journey and let’s see his improvements continuing.
