Ask Caroline, a Macmillan Nurse working with people who have Leukaemia, Myelodysplasia...
Jane is a haematology nurse with extensive experience in stem cell and bone marrow...
I just wanted to pop in and give you an update on my Nivolumab treatment as things have changed again and unfortunately it’s not good news for me. My latest scan has shown there is a new area at the top of my chest but also the other existing areas have stopped responding and are all now showing increased uptake so they’re confident my treatment is not working. They want to do another biopsy to make sure it’s still Hodgkin’s and not something different but we are all confident of what the results will be. They advised I could go straight to Allo transplant now but they think it would work best if they could reduce the amount of active disease so the hope is to gain remission with a different chemo I’ve not tried, ESHAP.
I’ve certainly heard of it and know it will probably put me on my arse but I need to do what I need to do. Downside though is my hair will fall out again but the upside is I will save money at the barbers!! Seriously though if I don’t laugh I could just cry. I’ve just had to go home and tell everyone it hasn’t worked again, it doesn’t get easier and they don’t deserve this. Sorry it’s not great news guys but I’ve known for a few weeks things were not right so wasn’t shocked at all and just wanted to let you all know.
Seems unreal that I was running a half marathon only a few weeks ago and now I’m back to this.
Might plonk myself on the sofa with a few beers tonight. The fight goes on my friends but the hill is getting steeper.
I am so sorry to read your update. I don’t blame you re: the beers, I think I would do the same.
I know nothing about NHL so apologies if this is misplaced but I think I’ve read about a few people taking a lot of time and a lot of treatments before they found the one that worked for them. I’m really hoping this one will do the trick for you Mark. Please know that there is always someone here to help support in whatever way we can.
I’m sending you loads of love and strength tonight.
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Hi Mark, sorry to hear this but for a good number of us this is and was the road that had to followed.
So let’s look for this treatment to get you to the point where your Allo can go ahead.
This may not be much of an encouragement but my team through everything at me but I went into both my Allo SCTs not in remission and with active cells still going about.......so we did roll the dice.
Have a beer on me as well.
Mike - Thehighlander
It always seems impossible until its done - Nelson Mandela
gutted for you! But please do get your team to consult with Professor John Radford at Manchester’s Christie Hospital, or Dr Chris Macnamara at London’s Royal Free/UCLH which I think are the same Trust. I’m certain Prof Radford would come up with an idea (he loves a challenge - he treated our daughter!) and it would be helpful to get other specialists on the case anyway.
and yes, I’ve heard of a few going into allo while still having some active HL, but it’s best if it’s under a sort of control. ESHAP isn’t too devastating and is normally used as a bridge to auto. Have they talked about ICE? That’s also used in a similar way, to gain some improvement.
Sending hugs, please keep us up to date.....xxx
So sorry to hear your news. I'm so very sorry.
Thank you for the kind words but as I’m sure you all know the constant setbacks get harder to keep bouncing back from. My family and especially my 12 year old son have taken it really badly and he still hasn’t spoken to me since I told them yesterday evening and it absolutely breaks my heart. This should be the happiest time of their lives but it’s not. I know it’s not my fault but I still feel responsible. I have the schools involved who are fully aware of my situation and they even receive counselling and mostly importantly I tell them all everyday I love them and I’m proud of them but they’re all still struggling.
I am determined to keep trying things as long as there are things to try so hopefully something will eventually work.
Moomy, my team spoke with John Radford and they already agreed this path should Nivolumab not work. I am going to push for B&B should this not work and then just keep pushing, it’s all I can do. It’s bizarre but I even just spent an hour in the gym this morning before work and feel absolutely fine today, not sure how that works.
I will let you know how the ESHAP goes.
I’m so glad your team are in touch with John Radford, he really still is one of the very best in the country!
really hope ESHAP works to give you a window to get to allo. I’ve known several who went through with active though not virulent HL and 3-6 months later their new marrow had begun the job of killing it off.
Not sure how you feel about it or whether you have access to it already, but it may be worth getting some psychological support for yourself too? I really understand the feelings of guilt when it comes to children - and those thoughts can get overwhelming. I know it’s not for everyone, but it helped me at my lowest point.
All the best
Good morning Mark, we always felt that the mind was a little clearer once we had a plan to hang our hats on.
Our two daughters are mum’s now and we’re anazing but our four granddaughters were one of the main things that kept me (us) going and I was very surprised as to how resilient they were during the time that Grandad was being sick.
We had a very good open supportive relationship with our Heamatology Macmillan Specialist Nurse Consultant, we called her our mother hen and did have her private number. We would meet with her regularly and she helped us to continually unpack the rucksack of stuff we found ourselves carrying around during these times.
Before the 5+ years of this part of my cancer journey started I was very independent and would keep everything very close to my chest but that had to change.
I (we) also spent a lot of time with a Phycologist/Support worker both at our local Maggies Centre and the one attached to us at my SCT Centre as the Stem Cell Transplant process in itself can be a hard phycological journey.
((hugs)) all round.
I am fortunate to have fantastic friends and family around me so I’ve always got an ear to bend or a shoulder to cry on. Greg is correct with the feeling of guilt and I do get this all the time with regards to the children even though as I said before, I know it’s not my fault. I was receiving counselling up until my Auto last year but haven’t felt I’ve needed it since but I think now might be the time to have another few sessions.
Mike, with regards to my team in hospital they too like yours are all amazing and always phone back should I phone, I even have my consultants email address and he always responds to anything I ask. I sent an email to him a few Sundays back at 9 in the evening asking him to look at a medical article I had found about trials with Car-T therapy on Hodgkin’s and give me his opinion as it was all medical jargon to me. I then went to bed thinking it would be read next when he was in clinic but was amazed to find next morning when I checked my emails that he had replied and in great detail at 10 o’clock on Sunday evening explaining the findings in the report. What was even more heart warming was that I could see he had done it from his phone, amazing. With an amazing consultant and team like that I honestly feel people are genuinely looking out for me and have my best interests at heart so on my down days it’s remembering things like that keep my driving on.
PS, Just a quick note to say when I got home from work my son came in and asked me how my day was and gave me a cuddle.......the worlds not a bad place after all! xx
One of daughter’s transplant consultants is on friendly (and very helpful) text terms with her and they still keep in contact. They met after her auto outside a bar in Sheffield in around 2005 (she and some pals were there between rehearsal and gig) when she had decided ‘what the heck, SCT has failed but I’m still here, let’s have a bottle of bubbly’ He and a friend had been having bets as to whether she had alopecia or had a SCT and he had the nerve to come and ask; he was right and won his bet, then bought a second bottle for them and gave her his card. Then he was working at the Marsden. He signed the bottle too and she gave him her contact. Years later (2011) they met again in the Christie when he was doing rounds and realised they knew each other already! He’s got a really difficult accent but is lovely and has been incredibly helpful!
Small world and also shows how much the professionals care! They vowed they would meet up again and share a bottle in the same bar!
I have just noticed your thread on this board!
So pleased to see that your team have a plan that you are happy with.
I hope all goes well with ESHAP and that it's not a bad as you fear.
How are you feeling? I hope things are progressing well for you?
Im sat in hospital at the moment on day 3 of my first cycle of ESHAP and so far so good. I feel totally fine with no side effects with the exception of the lack of sleep due to the steroids. I was even in the park with my youngest son last night playing football so I’m happy with that.
Ive just had a visit from my consultant and we are going to have a scan after 2 cycles and then make a decision. I’ve told him I would like to get to the Allo and just get it done so hopefully things will progress quickly.
We spoke about the B&B again and they are looking into this but he thinks it may be a cross border funding issue but as we both said, hopefully I won’t need it but if I do he will definitely chase it up. Another option is for me to get a Welsh postal address should I need to get around it but that’s lol further down the line, it would just be crazy if I had to do something like that.
I will let you know how it all goes.
Recovery is going well thank you, I am doing almost everything I would be on my 'good days' during chemo cycles, wouldn't be ready to go to work yet as I do still get fairly tired - especially mentally - but luckily I still have a few months of Maternity Leave left! I feel as though I am doing fairly well when I think of the brief recovery timeline the hospital gave me. I am back to my pre admission weight now, but could do with adding a few more kilos, so working on that!
I am so glad that you are getting through ESHAP with minimal side effects - I hope it stayed that way once the steroids were finished with! I had a quick search for ESHAP and it looks as though you had to have a 24hour infusion? Did you have a pump for that? You say you played football so perhaps not? Definitely guessing you weren't running around hooked to a drip stand haha
I have everything crossed for a quick Allo - and its good they will scan you after 2 cycles - will they be doing a third or will u hopefully go straight to transplant after the second?
Oh gosh I really hoped the access to B&B wasn't different here - let's hope you don't need to do something like that, talk about added stress!
Hope you are feeling well today.
Good to hear you are improving all the time and getting things back to normal as much as possible. People honestly don’t appreciate the effect a stem cell transplant has in the body so well done you.
I’m still doing ok but did struggle over the weekend when the steroids wore off. It’s the the first time I’ve had conventional chemo since my transplant in July and I can say I have definitely not missed the sicky feeling. Brentuxmab and then recently the Nivolumab are certainly a lot more gentle on the body and enabled me to lead a fully normal life but the ESHAP I can feel has had a negative effect. I was back in the gym and running at the end of this week but was certainly taking things easy although I am still working.
Part of the EASHAP is given 24hrs a day for the first four days so it did involve bringing home a bottle which I wore around my neck in a sling like holder. It works on pressure administering the drug slowly through out the day and night and was only a pain when sleeping although it was better than having the hospital pump beeping away through the night. I had to go back in this week to have my levels checked and these all came back within the normal range so, so far so good still.
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