Hodgkin's Relapse 1 week after end of 6 cycles of ABVD?

Hi Manos I noticed that your post had not had a reply so just dropping in past from the NHL group.

I am coming up to 5 years post my last treatments and can honestly say I also experienced pain issues in the same areas I had my growth, but I had pains in other areas as well.

My team were not that concerned about these basically saying that my body had been through a lot and it would take time for everything to settle down.

My main mass was on my neck and various post treatment CT scans keep showing an area in my neck.... false positive? But in my case it’s down to tissue damage.

The worst post treatment pain was also in my neck, but this was all due to the nerves that had been enclosed by the mass starting to stretch and this part of the journey took a good 2-3 years before I could say it was back to some normality.

Hi Mike and thank you very much for getting back to me. 

What you're saying makes perfect sense and I think that I'm so early past my treatment that my body can only be aching rather than anything else. I have let my medical team know what I'm experiencing so I guess I'll follow their advice and stop worrying too much about it. Sometimes the simplest answer is the true one, I hope in my case it is a matter of tissue damage/scar and that my body needs to recuperate. 

Thank you again for getting back to me. 

Manos

Great that you have told your team and great that my reply has given you some context.

Hello- I had a lot of achiness in neck/back/chest during treatment and after.  I’ve seen many people in remission still discuss how they can feel pains in the same spots tumors were.  I had my post chemo pet scan a few weeks ago (a month after treatment end) and was still all clear after 12 ABVD/AVD. 

Still have residual 5cm mass in chest but no activity/evidence of malignancy.  Hang in there, I’m sure you’re still in remission! 

Hello missmegz and thank you very much for getting back to me. 

I am very pleased to hear that you are now officially in remission! I wish you all the best and that this whole adventure will remain a distant memory.

I saw my medical team yesterday and they have re-assured me that it would be extremely unlikely for the tumour to have grown back to the point where it gives me symptoms such as dyspnoea, chest pains and so on. The only issue is that their protocol here is for the post treatment scan to take place 12 weeks after the end. I wish I could also have the scan 1 month after!

Thank you again for your reply!

Manos

Unfortunately I don't have any advice but I just wanted to say I am in a similar situation.

I had positive scan results for my interim scan. I'm on my last planned cycle of chemo now but I've started experiencing symptoms again which I had before I was diagnosed.

I have to wait till mid December as well to have my final scan and it's just so anxiety inducing. I thought I was finally near the end and going to start recovering, building my strength back that I've lost, but it just feels like I'm sick all over again.

Lily, I always maintain that a blood cancer journey has 3 parts, the diagnosis, the treatment and for a good number the final part, the post treatment recovery and recuperation can be the hardest.

It’s a difficult stage, this; the not knowing.

Never lose sight of the end goal, remission. It might take some novel ideas and treatments, but the medics do have quite a few ideas these days.

For daughter she simply never had a complete remission for over 7 years, the third trial drug did it completely and she went through a further treatment and is still here 9 years on. 

Hugs xxx

Hello everyone, 

I just wanted to let everyone know that I had my end of treatment scan and all is clear! It is a great relief!

It is quite astonishing as I was pretty convinced it was still there. I guess we lose the ability to know what is normal for our bodies following chemotherapy.

Thank you everybody for the support you offer. 

With kindest regards 

That’s terrific news! Congratulations! Now to pick up pieces and start the rest of your life in a new normal....

Hugs xxx