Hodgkin lymphoma

Hello - I speak from having 4+1/2 years of treatment for HL. 2 different types of chemo - ABVD and Brentuximab for 2 years then just finished 35 cycles of immunotherapy (Pembrolizumab - say that after a few pints!) and all I can pass on re effects of treatment is nothing. Everybody is different and reacts accordingly. What I will say is please tell the staff how any treatment affects you. If you feel rough then let them know and if you are feeling really 'orrible in between treatments then discuss this with the ward immediately - it is my experience of treatment in two counties (Oxford and currently Kent) that they run a 24 hour helpline. And don't forget the Haemetology Nurse Specialists. They act as an intermediary between the consultant/ward and patients. Tons of knowledge and "you" are one of one but to them you are one of dozens and thus can put your worries, etc into some sort of perspective. I am awaiting a PET scan to see whether I will need to buy Christmas cards this year.

I don't think there is a quick fix for anxiety but I suggest joining a group (Maggies Centre in your area?), use Lymphoma Action site for more support/information including groups.

Panic when you need to and get laughs and hugs when and wherever you can.

All the best, Pete +long distance hugs

Hi Pete

For someone new to all this your advice is much appreciated. I have had one phone call from the nurse specialist and she seems really approachable and helped me with a couple of questions I had. I now have more questions thanks to the lymphoma link I was sent. I have my first team meeting on Tursday with results and the next steps. Thank you again and I hope all goes well with your PET scan.

Suzanne + long distance hugs back

Glad your OK now.

Thank you so much ️

I would say yes and no , I know not very helpful. Yes the effects are slightly cumulative or they were for me anyway , I found that the fatigue gradually kicked in a bit earlier and lasted a bit longer as the corse went on , but no because you know what’s coming and it’s not so scarey anymore.

Thank you! 

Hi   I'm newly diagnosed too. Had pet scan last week, after 3 different biopsies. Appointment with my consultant today, it's stage 3, I need to have a scan on my heart on Friday, so it can be determined which chemo drugs I can have... as I had a heart attack 8 years ago. 

So glad for this community... I've been learning lots. Feeling sad and anxious, but know others are feeling the same way, J. 

Hi Jodi

I was diagnosed 2 week ago. I had a camera to look down throat then an ultrasound and one biopsy. I had my PET scan last week and tomorrow I am meeting my consultant and team tomorrow for the first time so all I know at the minute is I have Hodgkins lymphoma in my neck. Sorry to hear about your heart. It must be making this harder than it already is. All the best on this journey.

Suzanne 

It's the not knowing isn't it. 

Thanks for your wishes. 

I hope tomorrow is straightforward for you... and you get some answers for the next part of this journey. Feel free to message anytime. J ( Joanne ) 

That and the waiting! Thank you so much and you too.