Radiotherapy after chemo?

Hi DuchessRvn and welcome to this corner of the Community although always sorry to see folks joining us. I am Mike 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 but treatable type of NHL Stage 4a so although my Lymphoma ‘type’ is different I know this journey well.

I had 6 cycles of my treatment (R-EPOCH) 120hrs for each cycle so in hopital for 5 nights at a time. I have also had 45 Radiotherapy zaps. 5 zaps on my tennis ball sized tumour above my right eye - it was 50/50 if I would lose sight in that eye but the team were amazing and I have had no problems.

I had 10 zaps covering all my bodies Lymph-nodes and 30 zaps covering all my skin. I then went on to have two Allo (donor) Stem Cell Transplants.

I have other health problems (hit my community name to see my full story) so I have always gone with the recommendations of my various clinical teams. It's like if you want a beautiful stair designed and build - I'am your man......... but when it comes to this very complicated machine we have to live in - I trusted in my clinical teams judgment. 

As with all cancer treatments there are risks, indeed I know that I will most likely develop skin cancer due to my early treatments but I will deal with this the same as I have done all these years......... it's always been about the greater good in all this.

You will see from my profile that in Dec 2013 I was put on a countdown clock of about 30months and the treatments options available were the only thing available to stop this clock........ we often have had decisions to make but it is important to make them with no regrets.

I have talked with a number of folks with HL over the years on this platform and on another who have had Radiotherapy post AVBD and did well with it and are moving on with life. 

Lets look for some of the group members who have experience to pick up on your post.

To widen your search you may want to have a look at the Lymphoma Action website. Lymphoma Action is a small but very active UK Lymphoma Specific Charity who have lots of good reliable information, videos etc.

They also run Regional Lymphoma Online Support Groups where you can 'talk' with others and get support. They also have a great Lymphoma Buddy Service where people can be linked up with someone who has walked the same treatment journey.

Always around to help more or just to chat ((hugs))

Hello DuchessRvn- apologies for the apparent tardiness in replying but I was partway typing a reply whenthe electricity knocked off and 16 hours later it came back. The least of my problems. I was diagnosed with Stage 4 H-L in September 2019.

I too had a bit of a dilemma re radiotherapy following ABVD. This was 2 years ago - I was then 75 - and was told the radiotherapy in my right armpit for a dodgy node(s) could cause secondary cancers in my lungs in 10-20 years. Like, I guess the same as you, I haven't the knowledge or crystall ball to accurately determine the outcome of such treatment. And here I echo what Thehighlander has written in response to your request, and in the end, I had to trust "the experts".

I'm still undergoing treatment for H-L but coming up to 77 (firebrigade on standby for candles on the cake). I spend a day as a buildings and surroundings maintenance volunteer at a local heritage railway. I walk half an hour 6/7 to get a newspaper and on Fridays an hour walking with a group. I feel fine. I leave rock-climbing to others!

Again, I echo Thehighlander, there is support out there to you and your family/friends and one of the best support "mechanisms" are the specialist nurse(s) attached to your treatment unit. They have a wealth of knowledge, a direct line to your consultant and experience of people with your condition and associated dilemmas. They can help put things into perspective and help decision making.  Remember, to them you are one of many they have seen over the years, whereby to you, you are one of one.

Get (safe) hugs whenever you can and the best of luck,

Pete

Hi Mike , Thank you for taking the time to reply! I am happy you are here to help :)

Im sorry to hear about all the things you have faced and are currently undergoing, a very experienced opinion like your was defo what I needed.

I think you are right in trusting the professionals, I have no doubt they would put me in harms way, they have just provided the information so I can make the right choice. 

I think what I find hard is I am only 31 and have only just released where I wanted my life to go,The thought of those plans being stopped is scary and the thought of putting that responsibility on to someone I have never met is even scarier.

You are completely right,If it was terrible I wouldn't have been given the choice.Using the links you sent me I have read various other stories of peoples relapses and I think that has given me the push to just have faith in the people who know best.

Thank you sooo much xxx 

Hi Pete,  thank you so much for your reply also !! again I am so grateful you have took time to help me. power cut and all !!! 16hours!!!!I hope everything is now all fixed.

I am so happy you are doing well and it is encouraging to know so. I have decided to go with my gut and the great advice you guys have gave and trust the people who know, as scary as that is. 

And hopefully in 46 years I will have as many candles as you !! :) (the more candles the bigger the cake right??)

Thank you soooo much x

Glad that you have found the reply’s to your post helpful. It is important to collect as much info as you can get so you can make an informed decision with no regrets ((hugs))

Thanks you for your kind words. And if you are around in Kent in April on my birthday, I might, just might, give you a piece of cake providing my lovely family remembers - must give more hints.

On a serious note, the whole H-L thing IS scary and although I might sound flippant, there have been, and no doubt will be, times - especially in the middle of the night -  I ponder.and ponder. Sodding cancer!

All the best

Pete X