Hi everyone, Let me start by saying that I am looking forward too getting to know you all even under these difficult circumstances.
I am 55 and have recently been diagnosed with stage 4 Hodgkin lymphoma. As I had been of work since the end of July last year with various ongoing health problems and no one could tell me why , I was kind off relieved when I found out cause now I know I wasn’t going mad and put all my energy into fighting the cancer. The hardest thing was telling my family, they are great though so positive and supportive and I am as well. The treatment has started which is 6 chemo cycles followed with radiotherapy and due to have the second dose of the first cycle on Friday, I have a few questions regarding treatment and symptoms of the disease.
will the treatment have more intense side effects each time or does your body get more tolerant after each cycle ?
And does anyone else suffer from weak, painful muscles all over their body, and also severe psoriasis everywhere (which is clearing up nicely now thanks to the chemo) as this is part of the reason for why I initially had to take time off work, I have asked my doctor however he didn’t give a clear answer and I’m curious if anyone else has these symptoms
Hi 9876 and a warm welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Lymphoma groups.
I don’t have Hodgkin lymphoma but I was diagnosed way back in 1999 with a rare, incurable but treatable type of Non Hodgkin’s Lymphoma (Stage 4a) so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.
The early stages of treatment is a learning curve....... you are most likely 'looking' for every Side Effect that is mentioned in the literature that you were most likely given to come along........ but you will find it is so different for everyone. I had a completely different aggressive chemo (R-EPOCH) and like your ABVD?..... it was full on but honestly I did ok..... although I did go on to have many other treatments including 45 sessions of radiotherapy and 2 donor Stem Cell Transplants.
Yes the toxicity of the treatment will develop over time as your body takes longer to deal with the toxins so side effects do tend to be accumulative but at the same time some folks find that they are able to deal with this better as time goes on - no one size fits all.
One VERY important thing you can do is drink 2 liters of water every single day during and between treatments as this is the main tool that will flush out the toxins and protect you kidneys.
You have to remember that the initial treatments used for HL are aimed to cure. As I said my type of Lymphoma is incurable so this is why I have had so many years of treatment...... but I am now 7 years out from my last treatment and 6 years in remission so I am living the dream... (See my story)
Suffering from weak, painful muscles all over your body can often happen. The chemo attacks the 'whole' body so there is some collateral damage to 'good' cells, nerves and muscle. Are you trying to keep active?........ this is very important as the less you do the longer your recovery will be as you may find you have significant muscle wastage that has to be built up again post treatment.
Skin problems can be part of how your body reacted to you having HL and yes you most likely will find that your treatment will clear this up..... remember that your skin is the bodies largest and often most sensitive organ.
I you read my story you will see that I actually have a very rare skin NHL...... so the growths that you have 'in' your body...... I have them 'on' my body!!!!!!..... and my treatment eventually clear this up
At the moment it may feel that this is an impossible task but keep your head down, keep pushing into the storm and you will get there.
I will always highlight the Lymphoma Action website. Lymphoma Action is a small but very active UK Lymphoma Specific Charity who have lots of good reliable information, videos, webinars….
They run regular Regional Lymphoma Online Support Groups where you can actually talk with others every month........ and a great Lymphoma Action Buddy Service where people can be linked up with someone who has walked the same treatment journey.
Let's look for some of the group members to pick up on your post. You can also look through the various posts (hit the main group name and scroll down) and as always you can hit reply and ask some questions and see if the member is looking in.
I am always around to help out more, to answer questions or just to chat 
