Hodgkin's Lymphoma

Hi BobbieRosie and a warm welcome to this corner of the Community although I am sorry to see you joining us and to hear about your daughter 

I am Mike and I help out around our various Lymphoma groups. 

I don’t have Hodgkin lymphoma but for some context I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma) ……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well.

These treatments are undoubtedly hard….. but needs to be hard to get this killed off….. and even although she had to change treatments this is actually normal…… and in the end for HL is to cure.

You daughter (and you?) needs to have an open and searching conversation with her clinical team…… I have had some significant treatments especially between late 2023 to late 2015…… yes it was very very hard but I am now 9.5 years out from my last treatment and am living a great life….. and is with my first type of NHL being fast asleep.

She will see the final treatments as being impossible and as she says “this is no quality of life”….. but in the bigger picture of life…… this is temporary….. and this may well come down to how much she wants life :( 

I have talked so so many people over the years who were in the exact same position…. but took control of the noise between their ears and pushed through abd are now living a great post treatment life.

Always around to chat ((hugs))

Hello, I'm Pete in  deepest windy Kent and am at the other end of the age range - I am 80 (the new 79) have had treatment for Stage 4 HL between September 2019 and February 2024. Treatment included ABVD and immunotherapy and am still here!! It is a bugger of a process (for some and not all the time).

I echo what Mike, the Highlander, has written. And I want to emphasise a few things which might help you all in this horrible time. Being 29 gives you the greater chance of successful treatment than when I began aged 75. The treatment regime can be limiting in that every X weeks treatment looms and if the last one was rough you don't look forward to the next one. Waiting for results, e.g. the PET scan tomorrow, doesn't help in limiting stress for daughter and mum but that is part of the regime. Mike mentioned discussing with the clinical team and I want to refine this by saying  - based on my treatment in two counties, Oxfordshire and Kent - that the Clinical Nurse Specialists(CNS)  attached to the treatment unit are vital to "cultivate". They can act as a link between the individual/family and the consultant/treatment unit and discuss with"both" what is happening. They have tons of experience and knowledge and I am sure they have come across situations as you describe. To them you are one of many whereas I bet you both (like I was) are finding everything strange, disturbing and exhausting and nothing like your previous experiences. The CNSs have time to talk to people and, remember, do not write anything off as not worth discussing with them - if you don't tell 'em then thay can't help. So talk to them about your circumstances/situation.

Lymphoma Action is a great charity with stacks of information and support services ranging from individual to group support.

Finally (hooray I hear you cry) - don't forget laughs and hugs and more laughs and hugs.

Pete (have a long distance hug)

As Pete has mentioned do check out Lymphoma Action.

Lymphoma Action is the main UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment……. and all the links I use are from their website.

They run various Support Platforms… I highly recommend these groups as this will widen your support base and indeed your daughters as there is nothing better than ‘talking’ with others who have walked or are walking the same journey.

There are monthly groups online Zoom Support Groups for yourself in our Family, Friends and Carers Group and a great group specifically for your daughter’s age…… I say ‘our’ as I am also a volunteer with Lymphoma Action.

They also have a great Buddy Service where your daughter or yourself can be linked up with someone who has walked the same treatment journey.

The LA helpline is open every week day from 10 till 3 on 0808 808 5555. This is a safe place to talk things through and get support.

Hi BobbieRosie,

I just finished my 4th round of escBEACOPDac at the end of January and I can COMPLETELY relate to your daughter. I was diagnosed with stage 2 in July of last year. I had the two rounds of ABVD, which got me to Deauville 4 and then 4 rounds of escBEACOPDac to get me down to Deauville 3 (just about complete remission!).

I found the steroids completely messed with my mind and I REALLY struggled with depression during the treatment. I reached exactly the same conclusion after the two rounds of ABVD - the quality of life feels appalling and you just want to give up. Once the drugs all wear off, (which they very much do!) I was able to think straight again and was able to understand what I was thinking before...but you just can't see it at the time. I found little things like rescue remedy or Kalms helped take the edge off the depression for me.

BEACOPP (or escBEACOPP) is really hard but I take it she only (it's still a lot!) has one more round to go?

I had my daughter create a chart where I ticked off the days of feeling like rubbish for the final round and after that each day gets better and better.

Thinking of you all. MJ *hugs*

Thank you for taking the time to reply and what great news that you are in remission. The Dr rang yesterday to say her PET scan was clear. Owing to how poorly she is, he said she can take an extra week before the final round. I am hoping she will be able to see the bigger picture but at the moment she is adamant she will not have the final round. Her theory is that if the cancer has gone why does she need another round? I explained exactly why but her counter argument is well if it's going to come back it will whether or not I have the last round. I will update when she decides.

DD 

I guess the key to hit home is that it’s difficult (impossible) to see any tiny amounts of Lymphoma on a PET scan because of how t being a blood cancer. That extra round is there to basically destroy any tiny remnants which may be sticking around. Best of luck talking to her! 

Hello,

Glad to hear that the PET scan results were good! 

When I got the results of the interim PET scan last year it was the 2nd day of the 3rd cycle of escBEACOPP. I was extremely relieved, obviously, but I kind of thought 'thank f***, because there is no way I could have done another 3 cycles'. I understand her thoughts, especially since she started with ABVD and then escalated... 

But I tried to think about the bigger picture and the future. The more you get the more you lower the chances of it coming back. It would be good if the doctor or the CNS would show data or evidence to convince her that this is worth it.