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I'm new to the groups and chat - so thought I’d add my story as looking for a carer in a similar situation to chat to.
My husband was diagnosed in March with Hodgkin Lymphoma stage 4b, it was a huge shock especially how far advanced he was. But once we had the diagnosis and a treatment plan we both knew we could beat it. He started on ABVD in April and had 4 doses of this followed by PET scan to review progress. We were both so upbeat many of the symptoms had minimised and I thought we are beating this.
But the scan showed that it had worked to a certain extent but not enough. The consultant said they needed to change the treatment to something much more aggressive, that they use for relapse patients, called ESHAP. He would be treated as an inpatient - i felt hollow like the rug had been pulled from under my feet. I felt cheated that the ABVD hadn't worked and he had to go onto something which would be much more life changing. We don't have children, we'd been trying for a year before all this, and now it’s probably going to be highly unlikely to happen - which is also a huge blow amongst everything else.
My husband had a line put in and has had the first week of the chemo as an inpatient, he's been out for a couple of weeks now and he is due back into hospital on 22nd July for the next dose. After this he'll have PET scan and bone marrow biopsy to check the progress. The aim will be then to have one more does of ESHAP before going to have a stem cell transplant, which is hugely scary.
I'm in a funny place at the minute - when he's up, I’m up. But when he's down and appears ill I'm scared. Not help by being made redundant in May but to be honest on reflection it’s a blessing in disguise. I'm really sad about not being able to have children but have put this to the back of my mind - I just need him better.
If you’ve been affected by a similar situation or are going through something similar and would like to chat please get in touch.
The worse thing about cancer is the waiting – whether it’s for results, to see someone or treatment - but I just keep thinking it will get better.
I'm not a carer but I've been in a somewhat similar situation to your husband so perhaps I can give you my thoughts?
Firstly - I'm really sorry to hear that the ABVD wasn't doing the job quick enough. This does happen; in my case it happened second time around. I had a very short course of ABVD with radiotherapy back in 2002 when I was first diagnosed which seemed to have done the job perfectly well. However, in 2006, I got diagnosed with it again. This time it was of a different subtype so I've no clue if it was a progression, relapse or just new disease - not that it really matters. Since I'd only had a short course of ABVD with excellent results originally, they tried it again. As with your husband it worked but too slowly to achieve what needed to be achieved before I hit my dosage limit.
I went onto a salvage chemo called IVE - also an inpatient thing - and that did the job well enough to go to an auto transplant which once again got me to the all clear. I've no personal experience of ESHAP but I'd imagine it's of a similar bent. There are many of these chemo "cocktails", of course, with subtly different types of unpleasant side effects.
When I was originally diagnosed, my doctor refused to begin treating me until I'd had a sperm sample frozen so I was looked after in that respect but they don't like to keep it for more than 10 years so last year, before it was destroyed I got tested again and my counts were actually significantly better than they had been 10 years previously so there's no guarantees that you'll not be able to have children together once the transplant is done but you may have to wait a year or two until he's properly back to fighting fit.
This is a scary thing - and waiting is, as you say, one of the scarier things about it because you get to imagine all sorts of wild things while you don't actually *know* - but it'll come good, I'm sure.
Happy to talk about my experiences any time, just let me know.
Thank you so much Jules for getting in touch - i can see us in everything you wrote about. I'm scared, well petrified at the moment - hes actually just been admitted to hospital for an infection so i'm just at home picking up his things. At least they have got him in hospital and can treat it. its just the most fragile situation.
Knowing you've got through it helps, but the mountain just seems so big to climb at the minute.....
sorry for short message - will be in touch x
Thanks for your message Ian - really helps to hear that things can be better post chemo! They did try to take a sample but all sperm dead which initially told was the cancer and then later told not - so confused. But i just keep hoping that will happen - today is not so great as Mark just been admitted to hospital with infection - temp up this morning so went in and the bloody line won't give out any blood.... its been a nightmare since the thing was put in.
anyway - good to hear your experience - when I have a clearer head i'll be in touch with more questions
Please do feel free to join the group 'stem cell transplants for blood cancers' as your husband is beginning to go through that stage.....our daughter has been through loads of treatment and is now doing ok almost 22 months after a donor bone marrow stem cell transplant , so there is hope out there......I asked Admin if they would set up that group as I felt there is stuff to discuss that other HL patients (hopefully) never ever need to know about!
Thanks - i've joined....bit of a way to go before we get there! will get reading x
Oh yes, Ali, there are lots of ideas for treatment before the need for a stem cell transplant. Do ask if his tumours have been tested for proteins present on the HL cells, if there is a high concentration of CD30 he might benefit from Brentuximab Vedotin, trade name Adcetris. So do ask!
Keep posting, keep researching too, as when you go to clinic armed with specific intelligent questions they do look at you a bit oddly, but do begin respecting your queries.
Well we had the next PET scan and ESHAP has failed - the cancer has grown in bigger in his neck chest and stomach, plus still in his bone marrow. Makes me feel sick just typing that. But we'd suspected the itching and cough were back and sweats had started.
They are moving on to Brentuximab which is what Mark wanted - he is very upbeat about it and believes it will work. With a donor stem transplant at the end.
I notice you were having this - how is it going for you? How do you find treatment? is it similar to any of the others?
thanks Ali x
I just wanted you to know that there is every reason to remain upbeat and positive, I had HL 31 years ago and here I am still here and doing well all these years later!
I have been diagnosed with Non HL this year and 6 Chemo cycles have seen it off again! I have a nodule on the Thyroid that still needs to be dealt with surgically probably...waiting to see the Consultant next week.
So please know that many people come through this difficult time and that there is light after diagnosis.
Thinking of you and Mark and praying for good results for you.
We have communicated by p/m of course, but Brentuximab works by finding the CD30 protein which is often on HL cells and delivering a poison (Vedotin) to them.
Hope it helps Mark lots! Daughter found it fairly easy, but did get some peripheral neuropathy (as with many of the chemos she had) but it has resolved since.
Thanks so much Joy
Things are going ok at the min the new treatment Brentuximab seems to be working, as far as you can know without the scans, so we are hopeful.
So nice to hear some positive news..............
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