Newly diagnosed

Hi JWH1972 and a warm welcome to this corner of Community although sorry that you had to find us and especially sorry to hear about your HL diagnosis.

I am Mike Thehighlander and I help out around our various Lymphoma groups. I don’t have HL but was diagnosed way back in 1999 with a rare incurable skin Non Hodgkin’s Lymphoma so being on this journey for rather a long timeU have expressed lots of the treatments but not necessarily the same brand.

How did your first treatment go? was it harder or less demanding than you were lead to believe it would be?

Do also check out Lymphoma Action, a small UK Lymphoma Specific Charity who have lots of information, videos and run regular regional online Lymphoma support groups and indeed a great Lymphoma Buddy Service.

Always around to listen and help out as best as I can.

Hi Mike and thanks for the welcome!

First treatment was ok (as far as these things can be I guess!).  It was a whole day as I was also having Immunotherapy, which had to be regulated and doses slowly increased to avoid reaction and that took the whole morning.  The chemo itself was the afternoon, so I was hooked up to a drip from 9:15 am to 4:30pm!

In terms of reaction, mainly tiredness but alongside insomnia, which is an evil combination.  I'm on two week gaps between treatments so hoping this second week I get some more sleep.

Anyway, again, thanks for the welcome and I'll keep an interested eye on the forums and discussions.

Hi again, good to hear that the first treatment went well. What actual treatment are you having and how many?

These are some useful links for you to have a look at:

Nausea, remember not to suffer in silence when it comes to nausea there are lots of tools available - but your team need to know how you are getting on.

Fatigue may well build up over time so take each day as it comes but at the same time keep some activity going as this does actually help overcome some of the fatigue.

During my 6 cycles of R-EPOCH I was on my chemo for 5 days/nights so 120 hrs 24/7 at a time and the main issue I had was fatigue but my nurse team told me to keep active so I walked the ward corridors with my chemo stand after every meal and actually did a few miles a day.

Avoiding Infections obviously is very important but you will totally get this during these challenging times.

I would also highlight the importance of drinking lots of water as this will flush out all the toxins released by the chemo and protects your kidneys.

Let’s see if some of the HL folks are looking in as often once treatment is finished folks move on with life

My treatment is R-ABVD. 2 Treatments a cycle for 6 cycles and each cycle is 4 weeks.

R-ABVD is a challenging treatment regime but it's main aim is to kick your condition well back and hopefully achieve long term remission. 

As time goes on you will find yourself ticking off these treatments and see them as steppingstones to achieve the goal.