Hi, my wonderful Dad was diagnosed with Hodgkins Lymphoma 16 months ago, he is 84 and his cancer is stage 4. Dad had a course of chemotherapy which he coped with very well and during this period he seemed back to his usual self. He has been feeling pretty good up until now, his consultant started him on Brentuximab and he has had 6 cycles. In the last 10 days Dad has become very weak and tired, almost like he was when he first got diagnosed. His conultant has hinted that the treatment may have stopped working as they always said they could not cure him.
I feel so very sad for my Dad, it's horrible seeing him so frail, we do not know for sure yet what the situation is, he will probably need a pet scan.
I am so scared for the future
Has anyone else had any similar experience?
Many thanks
Clare
Hi Clare Clarial74 and 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 Hodgkin's Lymphoma (HL) but was diagnosed in 1999 with a rare, incurable but treatable type of NHL (CTCL) Stage 4a so although my Lymphoma ‘type’ is different I know this journey rather well.
Clare, I am so sorry to read about your dad's journey. The treatments used for HL can be full on and can be hard work with the Targeted Therapy Brentuximab being less challenging than some treatments but these treatments do take a toll on the body and more so on older patients but let's look for his medical team to reassess where things are and look to where things can go next.
The group has been quiet recently and I am not aware of anyone in the same position but can I highlight the Lymphoma Action website.
Lymphoma Action is a small but very active UK Lymphoma Specific Charity who have lots of good reliable information, videos and a dedicated Lymphoma Support Line 0808 808 5555 open every week day from 10 till 3.
The Lymphoma Action Lymphoma TrialsLink my throw up some helpful information.
They also run regular Regional Lymphoma Online Support Groups especially the Carers Group where you can talk with other folks who are supporting family on their journey.
Always around to help more or just to chat ((hugs))
Clare, the fact that he is ‘only’ two weeks out from his last treatment and slightly anaemic would definitely be a good reason as to how he is feeling - Even as a fit 58 year old when I started my 2 years main treatments it knocked the stuffing out of me ((hugs))
