Upcoming interim PET new lump...!

Hi Jo,

scanxiety is awful, and when you’re feeling lumps anyway it makes it worse!

but, honestly, if you keep prodding and poking at them, nodes respond by swelling up. They swell anyway when they are busy working, fighting infection. And the dull ache can easily be the cancer dying off! Yes it could still be active HL, but the scan will tell your medics if it is or not, they are your experts! 

Please try to think positively, that ABVD is doing its stuff and if it hasn’t done all your medics want, then they can and will swap treatment if need be. 

I know it’s tough though....

hugs xxx

Hi Jo  and welcome.

I had NHL but do understand your concerns but I must say I am with moomy on this.

During strong chemo your body is going through a lot of stress and yes, lumps and bumps come and go along with all the aches and pains and this just feeds the “what if’s”

An interim scan is used to see progress and you would not normally be HL clear at this point.

Your scan will tell the truth and you have to keep looking for this to be working and from my experience if there is any problem, Haematologists have lots of tools in the box.

When you feel up to it try putting some information in your profile. This really helps others when answering. It also means that you don't have to keep repeating yourself. Just click on YOUR username, select 'Edit Profile'. Put as much or as little in your profile and you can amend it at any time - you can see members profiles by hitting our forum names.

All the very best.

Hi Jo, I am actually at a similar stage to you. I was diagnosed with HL in April and I also have had 3 cycles of chemo. My HL is in 2 nodes in my chest. I feel your anxiety about the interim PET as I am too waiting for this. I have never felt lumps as its in my chest so i can understand how stressful that would be. 

I think I agree with the others, we need to keep positive. My arm gets very achy and the docs think it’s due to the ABVD being an irritant to the veins. This might be the cause of your pain? 

Hi and a warm welcome to you to the HL Forum. I do hope the encouragement talking with folks on this journey can help a lot. 

You can ask questions and the folks will do their best to help you out.

You may find our various Macmillan Support Line Services to be helpful - call them on 0808 808 00 00 This free service covers Emotional Support, Practical Information. Clinical Information, Financial Support and Work Guidance mostly open 8.00 to 8.00 but check the link.

We also have our ‘Ask an Expert’. section where you can post questions to our mostly Volunteer Experts but please allow 2 working days to get a reply.

Our Online Information and Support Section  is a good place to find information covering cancer diagnosis, treatments and pages covering most types of cancers.

When you feel up to it try putting some information in your profile. This really helps others when answering. It also means that you don't have to keep repeating yourself. Just click on YOUR username, select 'Edit Profile'. Put as much or as little in your profile and you can amend it at any time - you can see members profiles by hitting our forum names.

Always around to help out.

Hi Fraoch83, 

Good to have someone going through it at the same time. Hodgkin’s is so rare that I never meet anyone with it let alone someone going through similar treatment so that’s great.

im really freaking out. I’ve had my 4 sessions of ABVD pre Interim PET and I still have enlarged nodes which are looking stubborn and won’t go down so I’m terrified about escalating to BEACOPP. 

Does anyone know if a positive interim PET means poorer prognostic outcomes etc? What are the stats?

good luck with your scan, I keep everything crossed for you that it’s negative.

xxxxxx

Hi , so I had NHL and a different type of treatment but an interim scan is used to gauge progress so on the whole some activity would be expected. When I started treatment neck looked like I had a brick inside it, at half way it was a tennis ball by the end it was gone.

Keep focusing on this going the best way rather than the wrong way.

Hi Jomil85, 

I haven't met anyone either with Hodgkins so would be great to chat. Please don't stress yourself out. I know this is easier said than done but we don't need extra stress. Keep positive, you are going to fight this. I'm not sure what a Beacopp is? We are only half way through, I'm sure the lumps will go down. Are you to have radiotherapy at all? The docs are not keen to go that route with me as I'm young so they are hopeful the chemo is going to kill it. With it all being in my mediastinum I can't feel it reducing at all so have no idea what's going on until my PET. I got a bit confused with what a cycle was so I'm only having my 4th dose of ABVD next week so think you are a week or 2 ahead of me. My scan will be in August. I will keep everything crossed for you that it's good news. How are you finding the treatment? Are you having many side effects? 

Thanks Mike. I am trying to keep positive but I guess it's only natural to worry. I hope you are all clear now and living life to the full

Hi again, after 20 years and yes being told I was in remission back in Sep 2016 I will most likely always will be looking over my shoulder, but I tend not to do it much now.

So yes, living and loving life to the full every day regardless of what is going on around us as one thing we learned early on is not to focus on the bad parts of life as we were always able to find more positives to hang our hats on.

Keep focusing on the positives and if hurdles come along, from my experience there are lots of tools that can be used.

Hi,

coming to this a bit late, but just to reassure you, at long last the haematologists do have extra weapons in their armoury for Hodgkin’s. For a long long time they had nothing beyond an auto stem cell transplant, but there are novel treatments out there to try now. (Our daughter pioneered one which was her third trial and was the only drug to get her into a full remission; she has since successfully campaigned H.M.Govt for this to be added to the NICE list of secondary drugs to try) 

hugs xxx