Hogdkin lymphoma stem cell transplant

Hi and welcome to our corner of the Community.

So what type of Stem Cell Transplant (SCT) are you going to be having?

Your own stem cells harvested, chemo to kill your immune system and your cells returned (Auto SCT) or a matched donor Allo SCT?

I had two Allo SCTs, June 2014 then Oct 2015 and was told remission in Sep 2016.

I was diagnosed back in 1999 with a rare Cutaneous T-Cell Non Hodgkins Lymphoma. I was told “Incurable but treatable but would never see any remission”

Back in late 2013 my condition became very aggressive and was told I had a few years on the clock and only SCT would do the job.... and it did so be encouraged.

Sep 2016 put me in remission for the first time in over 17 years. It was all hard work but all worth it.

You can hit my Community name Thehighlander (as with others) to see our profiles - saves typing out lots.

You can also go to the ‘discussions’ tab Smear the top and look through some of the discussion and reply when you want.

It would be good to try and give a little more info about yourself as it helps us reply and this can be put in your profile.

Here are links to Macmillan's latest info on SCT:

Understanding donor stem cell transplant (allogeneic) - you can see the PDF here.

Understanding stem cell transplants using your own cells (autologous) - PDF here.

Keep posting as we are around to help you on this rollercoaster.

Hi Mike thanks for the time you took to answer me back .Going you must be like superman to have gone through what you have .The stem cell transplant I am going to have is my own stem cells.

Thanks again Mike and take care 

Hi ,

sorry to see you needing to go through this, an auto is tough but do-able, I hope it works fully for you as it really most often does....our daughter went through that after ABVD didn’t work for her, she was rushed through that but her HL was obstinate, (like her she still says!) so radiotherapy and 3 trials followed, eventually after more chemo she too went through an allo (donor) SCT which held the remission so difficult to get after 7 1/2 years, she’s still in remission now since 2011. But it was a long journey, and she’s so grateful for the NHS!

Hugs xxx

Thank you for that moomy

Hi Beatleboy, interesting community name

I'm due to go into the Royal Liverpool Hospital for auto SCT on Saturday (1st August). Although I'm quite anxious about it my stratergy is to just deal with it on a day by day basis. ThrHighlander very wisely advised not to over analyse it and I think he's right, it won't help.

It took me some time to navigate the new look site but I think I'm ok with it now so will keep posting my thoughts as and when and hopefully I'll be able to offer some useful info.

Doesn't look like I'll get to take part in my team's premier league champions celebrations though

Hi Fadz

Thanks for your reply sorry you have got to go through this but we are going to stay POSITIVE and we will be fine when all this is done.Please stay in touch and anytime you want to speak I am here.just a bit about myself as you can see by my name I am a Beatle fanatic we have spent many great times in the beautiful city of Liverpooldown the Cavern etc.I see you are a Liverpool fan they are my 2nd best team I am a wolves supporter and I was so glad to see you win the league.

    I have just finished my salvage chemotherapy and hopefully going to have a pet scan then hopefully start the sct,when is yours going too start? I see you go into hospital today may I wish you the very best of luck.Do you come from Liverpool?

 Any way Fadz keepin touch and all the very best.

  Beatleboy

Hi. 

I hope the salvage chemo has done everything it needs to do!

hopefully the PET scan will soon show you’re clear and therefore can safely harvest those stem cells. If they are going to give you a booster to get stem cells out into the bloodstream as they usually do, begin taking a daily Claritin tablet the day before the jabs begin as it does help prevent the worst of the bone pain you might get. Generic name is Loratidine, it’s an odd use for an antihistamine but does really seem to help. They use it widely in the USA but rarely over here, I’ve never been sure why.

Hugs xxx

Thanks for that moomy last time I took those jabs I ended up in hospital I could hardly walk,why don’t they prescribe them before you have the jab god the pain I felt was terrible.Once again thanks for that Moomy take care

I’m not sure why they don’t prescribe them, though for hay fever you do have to buy them yourself these days, due to drugs fund cuts. But even if they cannot prescribe they surely could advise? 

actually I didn’t even know till way after daughter went through all her treatments, I learnt and put it into practise myself when I needed treatment for osteoporosis, which gives some bone aches now and then, and continued when onto oestrogen busting meds for my breast cancer. 

I hope it works for you!

Hugs xxx

Hello again Beatleboy, Fadz is my work nickname so I chose it for this site. My name's Paul and yes, I'm from Liverpool. So you like the Beatles, I only like George's music but I once lived just a few yards down the road from John's aunt's house on Menlove. It was amusing to see the tourists congregate there taking photos. Good for them but up here we're kind of indifferent to them.

As for the football I prefered it in the 70's when the likes of Jimmy Case and Terry McDermot were in the team. It was real football back then.

Wolves hey, ard you from there? Myself and some mates bunked off school to go down there when we were about 14 to see if we could see SLADE!! Someone told us to go to a place called Wearstones or Waterstones road (something like that). We went but didnt see them - innocence of kids eh.

Anyway, I'm in hospital now, I'll be getting the line put in on Tuesday then chemo from Wednesday. I think I've been quite lucky as there wete no side effects from the injections prior to harvesting the stem cells, just some twinges in my back as the cells were released but knowing that claritin will help with bone pain is very useful as I did get bone pain pist chemo, thank you moomy!

The doctor has just left the room and advised me to eat anything and everything, now that can't be at all bad.

Yes it is sad that you have this battle but it is only a battle, we will win the war. Like you said, stay positive and focus on the good times we have to look forward to.

Keep in touch

Paul