Allo for Hodgkin’s

Hi Guys,

I think I’m just having a wobble. I’ve been in hospital today to visit a friend I’ve made on my journey and who had a transplant at the same time as me and he’s not in a good place which I think has shook me up. Not nice to see. 

With regards to having a beer I’m unfortunately on antibiotics so no beer for me I’m afraid. I’m out on Thursday with my work friends as I finish work on Friday to use up some holidays before my transplant so will have some then even if I am on antibiotics, but just a couple of course!

Regards

Mark x

Hi Mark,

wobbles are allowed, and good for you coming on here to express it! Hopefully things will go super-smoothly and you will wonder what all the fuss was about!

big hugs xxx

Sorry your friend is unwell, no wonder you are a bit wobbly! 

Enjoy that beer Thursday! 

Yes Mark, I totally get this wobble. Seeing folks you have walk the SCT journey with is a reality check but the path you are on is set out before you and it’s important to keep your eyes on the end game, on the greater good in all this.

A man ((hug)) coming your way.

Hi Mark 

Congratulations on your clear scan. I hope I can give you some reassurance!

I went in for allo for Hodgkin's last June without being quite in remission. There have since been some major hurdles including a relapse shortly after but I had a few doses of Nivo and have been clear of disease for a good six months now, feeling better than I have in years. I'm still a little restricted lifestyle-wise as i had quite bad GVHD after the Nivo so am weaning off steroids and still on immunosuppressants. The transplant is tough but now the donor's immune system seems to have kicked in it was worth every second.  

I have two friends at Southampton who had allo for Hodgkin's. One was in at the same time as me and the other had hers in December. We've all faced a lot of challenges but we're all currently disease free and getting our lives back on track - and of course very glad to have had the opportunity to have had a transplant.

If you have any questions I'm very happy to bore you with it all!

Charlotte

Hi Charlotte,

Good to hear you are improving and hopefully coming through the other side. I think I’ve already chatted on another forum with one of the girls you mention in Southampton (Charley??) . 

I can image the relapse early was quite scary and then having Nivolumab would have caused extra issues. I had Nivolumab before ESHAP but it stopped working. I was also told that there needed to be a gap between the Nivolumab and the Allo as it increased the severity of GvHD so the fact you had it after and came through it is testimony to your strength. It is good to know though that this is potentially an option after should it be needed but hopefully it won’t. Did you have any PD1 blockers before your transplant and what chemo regimes did you try? Which areas were you affected by GvHD with? What match was your donor? Are you able to get out and about in general? How long did you spend in hospital? 

My team advised I almost certainly won’t work again this year so I finished work last week to spend sometime with my children before I go in as I won’t be up for much during the summer holidays. It’s sad really but I spent all last summer holiday having my Auto and will spend this one having an Allo. Although they understand it’s hard for them as they want us to go camping etc which we used to do each summer and this should be the happiest time of their lives but it’s not, that’s the bit I find hard sometimes. How many children do you have and how have they been? 

Anyway, thank you for responding and keep up the fight. 

Regards

Mark 

Yes Charley is one of the girls!

Yes I had Nivo prior to transplant. I also had ABVD, ESHAP, IVE, CHLVPP, Brentuximab, radiotherapy over two years (also had my daughter while undergoing treatment). 

I was 9 weeks in hospital for transplant- I picked up adenovirus which complicated things.  Donor was a 10/10 match. I didn't have any GVHD until after a few doses of Nivo but that's when the disease cleared. I had gut and liver GVHD and was hospitalised for six weeks with that in Jan/Feb.  

I missed the holidays entirely last summer which was really hard but looking back it's just one small period which will hopefully add years to my life. My children are 2 and 5 - they've bounced back pretty quickly all things considered.  But totally understand how you feel.  I found the worst bit was saying goodbye but once I was on hospital I was in the zone and felt quite detached from the outside world- I guess it was a coping mechanism.  We did FaceTime most days if I was well enough and towards the end of my stay they were able to visit a couple of times

I have days when I'm really tired and still can't really do full time mum duties but I've had a lot complications which don't happen to everybody.  Other than that I'm able to walk 10,000 steps a day,  cook a roast dinner, school drop offs and pick ups and this weekend I went to see Take That! We're going on our first hol next month (in this country). I only have to go to clinic once a fortnight and this should decrease once I'm off the immunosuppressants.

I think it's best to accept that this may be a year out of your normal life- recovery can be slow and feel frustrating.  But that's not to say that it's a write off - I've had plenty of special times within this year and it's all about focusing on what you can do - being out in the open air,  building up your strength, spending time with your family... watching telly, reading etc - whatever floats your boat! X

Thinking of you Mark and hoping all goes really well 

hugs xxx