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...!

Jomil85
Posted by

hi all,

i haven’t posted before but am dealing with some serious scanxiety and need some people’s input.

I was diagnosed 2a (unfavourable due to number of sites).

Main sites were auxiliary, neck, mediastinal and post pectoral. 

Ive had 3 sessions of AVBD, one more on Monday then interim scan.

I’ve had some good response, the lumps under my arm have more or less gone save for one node that won’t seem to budge. Hoping this is scarring.

But two things have been worrying me. I get a feeling of aching in this area, is this normal or does it mean the cancer is growing back??

secondly, today I noticed that my left throat node felt enlarged compared to the other side. I have been freaking out that this means it has spread. 

Has anyone had any similar experiences?

could it just be reactive due to my comprised immune system?

maybe I just hadn’t noticed it before?!

if everything else is shrinking, does new growth happen in other areas??

im totally freaking out! 

Thanks

Jo

moomy
Posted by

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

Moomy

Thehighlander
Posted by

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.

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela

Fraoch83
Posted by

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? 

Thehighlander
Posted by

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.

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela

Jomil85
Posted by

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

Thehighlander
Posted by

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.

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela

Fraoch83
Posted by

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? 

Fraoch83
Posted by

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

Thehighlander
Posted by

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.

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela

moomy
Posted by

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

Moomy

Reanswolf
Posted by

My son has advanced HL so I have spent weeks scrutinising the internet, which can be dangerous. But of course I am just a lay person, trying to interpret stuff that is medical - so please beware of my limitations. Your specialist will know exactly what  to look for and how to react to your scan results.

The interim scan is very useful as they can tell how your lymphoma is reacting to the existing or initial chemotherapy - they want to get the balance between under and over treatment right. If your lymphoma is not reacting and is somewhat chemo-resistant, they are likely to escalate it by switching to a more aggressive chemo. Of course there are drawbacks to stronger chemo, but overall on balance, they decide whether this is necessary, after discussing it with you.

You might want to copy and paste the German stuff I attach from 2017, below. Ok its not the UK, but there are presumably similar protocols, and EuroNet which includes the UK incorporate much of the German strategy which is considered at the cutting edge. Whilst a Negative interim PET scan is good, they hold the view that interim PET scan is barely now that prognostic with Hodgkin Lymphoma, because augmented or escalated chemo therapy can produce almost as good PFS rates for those with Positive-interim PET scans as those who have a negative interim-PET scan. Obviously, listen to your own specialist above anything you read on the web, only they know your specific circumstances and biology of your illness, but this does give you an interesting perspective on how effective different treatment can be with HL.

ncbi.nlm.nih.gov/pubmed/28236583

Regards your nodes, well they may well reduce quickly, but my sons specialist told us that equally the chemo may due its work effectively but the nodes take some time to reduce, so its difficult to say what is happening. If some are reacting by going down it would suggest that your lymphoma is not chemo-resistant. We had the same scenario with my son, whose main one under his arm disappeared quickly (6 x 5 cms) but others took longer to go - infact a few weeks longer. Sometimes, brown fat deposits will still remain.

Nick
Jomil85
Posted by

Hi Fraoch83,

sorry for the delayed reply. I had my 4th treatment last Monday and this week has been really hard.

I have lots of side effects, each get worse. The first treatment I felt mostly tired, disorientated and had some stomach problems. 

The second one the fatigue was worse, i was struggling to work as was quite confused and couldn’t concentrate.

My hair started to shed at number 3, it’s gradually shed more and more. I have probably lost about a third now after treatment 4. I also developed neuropathy in treatment 3.

treatment 4 has been a shocker. I’m off work now and spend several days in a row in bed. I find it difficult to socialise and can’t really go out far as I get so tired. I am still dragging myself to the gym when I can.

ive also put on weight because of the steroids... it’s been rough!

my scan is on Wednesday. At this stage they expect remission, so if there is active cancer they put you on a new chemo regime called BEACOPPesc. It’s much more intensive than ABVD. So obviously I’m really scared.

I am having radiotherapy, although it’s risky because of my age. I’ve had different advice from different consultants. Due to the unfavourable nature of my cancer, I’m going to go for it to hopefully reduce my chances of it coming back. This is the standard protocol for where I’m being treated at King’s College London.

how are you? How are your symptoms?

Jomil85
Posted by

Thanks Nick,

this is helpful, and it’s reassuring to hear about your son’s journey. 

I’ve been trawling through all the literature endlessly for hours, sometimes I don’t know how helpful it is. There is often conflicting findings and I get frustrated with the different diagnostic criteria’s and study samples (eg some include early unfavourable as an advance lymphoma).

the trials for BEACOPP escalated are encouraging especially compared to continued ABVD, although some report more favourable outcomes than others. There is nothing I can do but wait now. 

I honestly can’t predict what will happen in my scan. I still have a node/collection of fused nodes which are sort of flat, squishy (medical term!) and pea sized ish. They used to be golf ball size, so who knows...

Can anyone enlighten on what scaring feels like? .

My fear is that because they still reduced after treatment 4 then there is still active cancer. As I get sicker and sicker from the chemo I wonder how I’m going to cope with anything more intensive.

thanks

jo

moomy
Posted by

Hi Jo,

flattish and squishy nodes especially where they have been firm and lots bigger, sounds pretty positive that the ABVD has been having a decent effect on them to me, even though I’m no HL expert (just the Mum of a lass who had HL for some years) 

quite often if the nodes have been bulky there is some scar/fatty residue which can take a while to go fully. The actual cancer cells (Reed Sternberg) form quite an area of other cells around them as a type of protection I guess. That’s also why a fine needle biopsy often isn’t conclusive as they don’t pick up the nasty beast itself! 

The cumulative effect of chemo is tough, but do try to get up and about a bit as much as possible. Oddly, regular gentle exercise is one of the best ways of fighting the chemo fatigue (I know, it sounds totally counter intuitive!) Daughter found the second week was fine, and usually managed to get back to work. 

Hugs xxx

Moomy