Hi,
Im currently 3cycles in to ABVD (now AVD) for Stage 2 Unfavourable HL, excellent response at interim PET.
Im really struggling with the side effects and have been since the start of my treatment, I get terrible nausea/vomiting within an hour of treatment that lasts for 2/3 days and terrible jaw/mouth and bone pain which lasts up to a week. I’ve been put on multiple antiemetics, mouthwashes, painkillers etc, none of which are making any difference. I have an 18month year old toddler and I’m also struggling mentally at the guilt of not being able to physically look after her as well as I could do due to these side effects.
When I last saw my consultant she briefly mentioned that 4cycles of ABVD and radiation is sometimes an option rather than 6 cycles of chemotherapy alone, but she brushed over it as I’m a 32yr old female so not often the treatment of choice. I know treatment preference can vary trust to trust.
Has anyone been in a similar position that could give me some ‘lived’ advice? I have asked for a further discussion with my consultant to discuss things more clinically, but would also like to gain an insight on the pros and cons from a patient perspective.
Thank you
Hi 04lecart and a warm welcome to this corner of the Community although I am sorry to see you joining us and to hear about your challenges.
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 diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma) ……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell - Not Otherwise Specified NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well……
First let’s look for any group member who have asked the same journey and dealt with the same problems to get back to you.
There is a big question about long term remission…. I have often talked with people on here and through Lymphoma Action (I also volunteer with Lymphoma Action) about ‘more mature’ patients being offered reduced Chemo and follow up Radiotherapy to help reduce the physical side-effects…… but this often all about short term quality of life over looking to eradicate their Lymphoma.
I had a completely different type of very strong chemo….. and there was no way that I could have had any reduction in my main chemo as this chemo was being used to open the door for me to go on to have Allo (donor) Stem Cell Transplants (June 2014 then Oct 2015)…… without that window being opened I would not be talking with you today
To widen your search for answers you may want to check out the Lymphoma Action . Lymphoma Action is the main UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.
They run regular Support Platforms both 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.
Lymphoma Action have a Lymphoma helpline on 0808 808 5555 open every week day from 10 till 3. This is a safe place to talk this through and get support.
It’s good that you are going to have a further discussion…… this has to be an open and honest one looking at the long term prognosis with not going the full set of chemo.
Always around to chat.
