Treatment following negative interim pet scan

Hello Lauren. My daughter had stage 4 HL and after 2 cycles showed the same response as you. She went on to have 6 cycles. We are now 4 years later and all looks very positive. Good luck with everything. Kerry

Hi Lauren, 

I’m in agreement, if you can avoid radiotherapy after chemo, do so, even if it means a further cycle. You might also talk to your consultant about reducing the drugs, one they often drop is the Bleo to prevent any lung issues, especially if you’ve ever responded with a cough.

Hope all goes well for you

Hugs xxx

Hi Lauren 

This is my first post on here as I am new to the site but when I read your post it resonated with me. 

I am 33 and was diagnosed with Stage 2B HL in November which completely pulled the carpet from under my feet. I am now on my second cycle of chemotherapy (and am just losing my hair - I've gone from long thick hair to a smattering just about covering my scalp! But at least it lasted for Christmas!) 

From the outset my consultant wanted to avoid radiotherapy if we could (I had raised nodes in my chest and neck) and the plan is for 6 cycles of chemothepy. My PET scan is for end of Jan so fingers crossed for a negative result. If not I will be transferred to BEACOPP. 

Congratulations on your negative scan and all the best for the remainder of your treatment. 

Can I ask how you have found the chemotherapy generally? I had been hoping to continue working ( I have a busy job and thought it would keep me feeling normal) but unfortunately that has not been possible as I haven't quite bounced back after the first two treatments as I had hoped. I have really struggled with energy levels and described the feeling to my fiancé as if I had been permanently sedated for the first 10 days after treatment! 

Best wishes 

Sorry Lauren, I also should have said if I do get a negative scan then my consultant has said he plan would be to drop the bleomycin for the remaining cycles. 

Hope that helps 

Hi Lauren 

I have been diagnosed with 2a Classic hodgkins, I had my 2a treatment on 21st Dec & am in for 2b on 4th Jan.

I was told when diagnosed that with my case they would usually give 4 cycles of chemo followed by 2 rounds of radiotherapy, however due to my age (I am 32) & where my enlarged lymph nodes are (chest, collar bone & neck) and increased risk of secondary cancers I would have 6 cycles of ABVD.

I should have my PET scan after this next lot of chemo to check all is going ok with the ABVD 

Hi Lauren 

I have just had my 2 month PET CT scan as well and my results were the same ..... couldn't of asked for a better Xmas present .... I have stage 3s HL and my results showed it has gone from my spleen and has shrunk by more than half in other areas. I was told from the outset even if my results were good I would have another 4 months of chemo to make sure we completely get rid of it. My doctor did say after the 4 months of there was still a node that wasn't completely clear of cancer radiotherapy might be an option for that one node. All the best for the next few months and hope you get the all clear soon.

Darren 

Hi Lauren,

I just completed 3 cycles. Hodgkins stage 3. My interim PET scan came back clear so bleo  was stopped. Have to complete 6 cycles with no radiation.

Good luck!

Hi KC2017,

I’m 42 and eating healthy has really helped with the chemo side effects. Have you tried staying away from sugar and processed food? Lemon water, salads, lots of fruit. Hope you feel better real soon. 

Hi KC2017

Thanks for your comments. I think I will be 6 cycles also if we plan to avoid radiation but I hope to drop the bleomycin for the last two cycles.

I had treatment 4a last week and my hair has lasted very well until lately but had thinned drastically in the past few weeks.  I haven't been working during treatment either as I have quite a busy job and my immune system has remained low throughout my treatments so I thought it would be safer to avoid the office and focus on the treatment. (My consultant didn't want me to take the injections to boost my immune system.) I would generally feel sickish for the first 48hrs after treatment and then very tired days 3&4 after which energy levels would gradually pick up again.

Best of luck for your scan and treatment, keep in touch.  

Lauren