It's been a nightmare. First diagnosis was 4 years ago when J was becoming very weak. A&E rushed him through for transfusion. 2 fairly good years followed on Rituximab. But he was then transferred to a different doctor who obsessed on platelets and ignored his preferred platelet drug dragging down the red cell count. Back to extreme weakness plus (as we learned later) increasing protein level, and a series of falls. I begged for help over and over again with no result.
J now started episodes of alzheimer behaviour, bonkers, uncooperative so I was fighting him to keep him safe as well as fighting the health system. Got him in through A&E again after his 10th fall and got plasma exchange. But he was now completely crippled by deep bruising from all the falls so they couldn't discharge him while the bruising slowly healed. Funnily enough this caught their attention (bed blocking aren't we naughty) and actual treatment began.
But he was sent home on Cyclosporin with no arrangement to monitor progress even though it's known to fail 30%. Which it did but it took weeks to make that clear. While J weakened again and I kept begging for transfusions. Finally arrived at Waldenstrom diagnosis which given the glaring and early symptom of viscosity (my hindsight) should have been obvious to experts long before.
Now on 2nd cycle of Bendamustine and weekly transfusions. Bendamustine has hit the protein problem so no longer coping with alzheimer brain. But it also hits red cells which are low anyway as the basic problem. However there seems to be a little improvement as the weekly transfusion now takes 5 days to sink to 60 reds count instead of 2 or 3 days like before. Life of a limited kind is possible.
My own cancer is fine (breast, no return). I have support from Macmillan and as I'm disabled I have a carer twice a week who is wonderful. Plus adult son carer who is wonderful. Plus Catt who is wonderful. Me is wonderful. I do get very stretched but I'm coping.
I'd be grateful for any bendamustine experiences. You can understand on the above tale I'm a bit distrustful. There seem to be stories aplenty of long term bendamustine survival and active life on it. We're midway through the 2nd cycle and there will be 4 more (I think). Improvement for J is real but slow so far. Any comparison how long to expect for it to work fully if it does?
Hi morgain13 and a warm welcome tacross o 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 WM (Waldenström’s macroglobulinaemia) 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 rather different I do appreciate the challenges of this journey rather well.
I have had lots of different treatments over the years but not Bendamustine so let's look for any group member who has had this to pick up your post.
This is such a challenging time for you all and you need all the support you can get. I always highlight the Lymphoma Action website. One of the Bold link above are taken for the site.
Lymphoma Action is a small but very active UK Lymphoma Specific Charity who have lots of good reliable information, videos and run regular Lymphoma Online Support Groups with a few groups specifically for Family and Carers...... I highly recommend these groups as there is nothing better than 'talking' with other who have walked the 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
