Hodgkin lymphoma

Affected by Hodgkin Lymphoma? Join this group to share experiences and ask questions to people who understand what you're going through.

Upcoming interim PET new lump...!

Posted by

The amount of research available is scary, and as you say it is so contradictory. Though much of it is from 20-30 years ago, and success rates vary so widely but you can bet the better rates are the more up to date ones in the western world.

There are so many different prognostic features highlighted (and to be honest nearly everyone is bound to have some good, some bad features), and so many scary interpretations, but it is still one of the best, if not the best (if cancer can ever be good of course) cancer to have.

Success rates for HL are 85-95%, and that's taking into account those bad prognostic features.

I am the biggest worrier out there, I think we all worry like absolute mad.

Posted by

Thanks for all the support everyone.

Scan is tomorrow AM and results on Friday morning.

will keep you posted.

Jo x

Posted by

Just got my results... interim PET negative... complete metabolic response... am in remission!

just need to get through 2 more cycles of ABVD!

my consultant said results couldn’t have been better, on the way to be cured!

so happy, thanks for al the support.

for anyone worried out there, I honestly thought I would have a positive PET as I had remaining lumps and had so many symptoms similar to before I was diagnosed... there is always hope!!


Posted by

Hi Jo...... well look at that then...... totally happy for you.....now to turn the noise in your head down a few notches..... take a deep breath and a little celebration.

It is always good to remember that an Interim Scan is to check on progress and often as not it’s good news and for those who don’t get as good a news as you, then it tells the team that a new approach may be needed.

Have a great weekend ((hugs))

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela

Posted by

Jo, that’s SOOOO great! 

I know you’ve still got some chemo to go, but look at it in the way that it will catch any sneaky bu**ers that might be lurking ready to strike! 

Congratulatory hugs xxx


Posted by

FANTASTIC! That’s excellent news Jo! So happy for you. I wish you all the best for the rest of your recovery . Fingers crossed I get similar results in 2 weeks time x

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Hi Jo, im sorry I must of missed this message coming through. My symptoms haven’t been as bad as I expected. After the first treatment I actually felt ok. Felt bit of a fraud being off work. I have gotten more tired as the treatment  goes on but it is manageable. The meds they have given me have worked ive not been sick at all but have had bad heartburn and constipation. 

By week 3 I started to lose my hair. I found this quite traumatic. Before treatment I wasn’t too bothered about losing my hair but when it happened I didn’t cope well. I ended up shaving it off as finding hair everywhere got really annoying! 

Your doing amazing still going to work and the gym. Im lucky i get 6 months full pay so decided to take the time off to get better. I work 12hour shifts in a hospital so don’t think I could cope. I make sure I get out for a walk each day but normally the first weekend after treatment is a write off for me. I just need to rest. 

My consultant has now decided that instead of radiotherapy they want to go for the 12 doses of ABVD now. This might change after the PET but it’s to save me having the radiotherapy. It’s a good thing in a way but I was so excited to be over half way but it’s now going to keep going until November. 

I just can’t wait until this is all over. Im sure you will too. Celebrate your good news. It’s fantastic about the PET x