Hodgkin's Lymphoma end of treatment

Hello D76 - the best advice I can give you, having had extensive treatment for HL and now in remission, is to speak to one of the Clinical Nurse Specialists (CNS) associated with your treatment centre. Do not wait for your consultant. The CNS have tons of experiencea and knowledge - to them you are one of dozens they see. They can act as a "go-between" you and your consultant.

Oops pressed send link too early - apologies. meant to add "Do tell them everything.

All the best, Pete (and have a long distance hug)

Hey, thanks for the quick response!! I've got my appointment in 4 days time. I did try to reach out to the CLS a few times but I got no response. Will keep trying! Thanks again! I was just trying to figure out whether it's normal to feel these things or not!

Hi D76 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 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.

Well done getting through your treatment.... Escalated Beaccopdac is a full on treatment but a great result that your interim scan showed full responsiveness.

As has been said...... the best people to talk stuff through with is your CNS.

In all my years of pre treatment and during my treatment I never had any hot flushes or night sweats....... but a few months after I completed all my treatment I had a full week of drenching sweats....... nothing to do with my Lymphoma but put down to my body still working through the treatment hit....... and I have significant scaring where my mass was and to this day, 11 years out from my main chemo this always shows up on scans..

And as you get ready for your next appointment you will find this link helpful as it has question specific to each part of the journey.

Questions to ask your medical team about Lymphoma

Hello,

First, and as Mike said, well done getting through it. I myself got diagnosed with 4b (groin, spleen, bone marrow, etc) in February and did exactly the same treatment as you with also the same positive response. It is a very tough journey to endure in such a short period of time, I always define it as intense, both from a physiological and a mental point of view (the shock, the waiting times, the uncertainty, the countless visits to the hospital, blood tests, results...)

I did a CT scan 4 weeks after end of treatment (not PET, just normal CT with contrast) and I had some nodes which were still considered 'big' (max was 22mm I believe). I was told this would be residual scar tissue which would eventually go back to normal after being swollen for months. As the PET mid-treatment showed good response it was not concerning. 

Ask all the questions you need and push to get any test that gives you reassurance. You come to realise that peace of mind is one of the most important things to have in the months after treatment. Take care of yourself and I hope you have a good recovery, give yourself time, you have gone through a lot.