Hello everyone,
I am so pleased I have found this forum as I have felt a bit on my own and not sure if the side effects I was experiencing were just me. I feel very reassured having read some of your experiences.
I started my treatment in April and have had 6 cycles of ABVD , all on a cannula as my veins were too small to tolerate a picc line. I didn't know that I could have picc line envy. My interim pet scan showed my tumour in the mediastium had reduced from 6cm to 4 cm, so I was taken off the B drug. Unfortunately, I started to develop lumps in my chest and shoulders which are quite painful. The consultant said not to worry that they were part of the compression of the tumour. An interim ct scan showed that the tumour had not reduced anymore since August even after the 3 additional cycles. The good news was that it hadn't developed. Am hoping that the final cycle had some impact on the size of the tumour. Sis anyone else find this?
I had my post chemo Pet cycle last week and have my consultant's appt on Thursday. Just wondering if anyone else has developed similar lumps and bumps. If so, what treatment did you have after your 6 cycles of abvd? I would prefer not to have more chemo....wouldn't we all ??!!...and Hope the lumps can be sorted with radiotherapy.
Would love to hear from.anyone who has had a similar experience.
Best wishes to everyone reading this and thanks for sharing your personal experiences. It has certainly helped and reassured me.
Hi Gerdec and a warm welcome to this corner of the Community although I am sorry to see you joining us and sorry for not putting up a reply last night but it had been a long day.
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 - NOS 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.
Lumps and bumps in other areas in the body can often happen and did for me….. the bodies lymphatic-system becomes very reactive when the chemo is flowing through all the body, not just in your tumour area so the lymph-nodes with wax and wane.
I am left with significant scar tissue where my brick sized mass was in my neck (See my story) so this shows up in ever scan zi have had in the past 10+ years.
Time will tell as to what you are told and until you are actually told there is a problem then there is not….. I know that this sounds rather simple but it’s worked for me for 25 years….. and be assured that if more treatment is required they have tools in the box.
You will see from my story it is rather complicated….. as my main chemo in late 2013 was being used to open the door for me to go on to have an Allo (donor) Stem Cell Transplant (actually I had 2)…… but I am 9 years out from my last treatment, I turned 69 last month and am living a great life.
The link below has various sets of question that can be used at appointments depending on what stage you are in the journey including when there is still treatment needed….
Questions to ask your medical team about Lymphoma
Always around the chat.
Geraldine Gerdec I am pleased that you have found my reply helpful……
Go to your appointment looking for a positive outcome but don’t panic if there is ‘work to do’…… will you have someone with you?….. my wife was my note taker and question prompter……. it’s easy to miss important stuff during these appointment especially end of treatment ones.
Do get back to us once you have had your appointment ((hugs))
Hi again Geraldine Gerdec and apart from Covid…. this is great news.
Does your team know about you developing Covid as you could well be eligible for antivirals.
Navigating the post treatment journey can be full of twists and turns…… you may want to
You may want to also check out the Lymphoma Action…….. Lymphoma Focused Live your Life Course…. this is a peer-led post treatment self-management course.
You may find it helpful to make a cuppa and have a look at this great paper
After Treatment Finishes - Then What?
by Dr Peter Harvey as it highlights the post treatment milestones.
((hugs))
