Hi,
I have Stage 2a classic hodgkin's lymphoma, I'm about to get my 4th Infusion to end my 2nd cycle on Tuesday, after that I've been told Bleomycin will be dropped for my remaining cycles.
Has this happened for others and will side effects get easier?
I have struggled a bit with side effects of the Abvd especially as doses for me seem quite high at 55mg for doxorubicin etc and also anxiety got me a bit after the second infusion and picc line being fitted, something I never thought would get me in all my 43 years so far but it did and it humbled me a good bit. Lol
Hoping it gets easier once bleomycin is removed.
Hi Neila90c00 and a warm welcome to this corner of the Community although I am sorry to see you joining us.
I am Mike and I help out around our various Lymphoma groups.
I don’t have Hodgkin's Lymphoma but for some context I was officially diagnosed way back in 1999 at 44…… although I now realise I had most likely been living with with my rare (8 in a million) incurable but treatable type of Skin CTCL Non Hodgkin’s Lymphoma fir a number of years.
I eventually reached Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive PTCL Non Hodgkin’s Lymphoma was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well.
Drugs are often dropped during the course of treatment so let’s look for any group members with experience to get back to you.
Dropping drugs actually happens a lot in NHL treatments but for me I had to have the full force of the treatment (6 cycles of R-EPOCH with me in hospital 5 nights/6 days on my 2 IV pumps 24/7 for over 120 hrs) as it was being used to open the door for me to go on to have an Allograft (Donor) Stem Cell Transplant….. it’s a long story but I actually ended up have 2 Allograft SCTs.
This unwanted journey is full of twists and turns and can takes us out of our comfort zone….. but I always reminded myself that this was a temporary time in my life and there was light at the end of the tunnel.
But I am coming up to 10 years post my last treatment, I turn 70 in a few months and I am living a great life - this can be done.
Always around to chat.
