Nivolumab

Mark,

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.

Greg

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.

Hi Mark,

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

Oh Mark,

So sorry to hear your news. I'm so very sorry.

Hi Guys,

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. 

Regards

Mark x

Hi Mark, 

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. 

Hugs xxx

Hi Mark,

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

Greg

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.

Hi Guys, 

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. 

Regards

Mark x

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

Hi Mark, 

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! 

Hugs xxx