Hodgkin’s lymphoma relapse survival rates.

Hi , 

So very sorry you've relapsed. And that's a quick relapse too, thats gutting. 

What plans do your team have now? As there are treatments available. Where in the country are you being treated? And might there be time to think about your fertility as you're young....

If possible I'd ask that your team consults with others as to the best way forward for you, others like Dr Chris Macnamara at London's UCLH, Professor John Radford at the Christie in Manchester are names which readily spring to mind. 

It IS possible to get the next hurdle over and get into a lasting remission, but it's often a bit of a hefty hurdle. But it's tough to get your mind round it all. Our daughter had over 7 years of treatment for HL till she got a remission but then went through a donor SCT (usually called allo or allogeneic on here) and is still in a lasting remission and that was 2011. 

Sending you big hugs xxx

Oh, and it's often helpful to pop a bit of info into your profile, just click on your user name, then on edit my profile, when you've done, click save. 

Mine is long due to the length of time daughter took (and then I got breast cancer too!) 

Hugs xxx

Hi and a second welcome to our corner of the Community.

So I had a rare Non Hodgkin’s Lymphoma that was diagnosed way back in 1999 - incurable but treatable I was told and I would never see remission.

Long story short but I eventually had two Allo SCT with cells from my brother (see my profile) and knock me over with a feather I was told I was in remission back in Sep 2016....... there is always hope.

Keep posting as we are around to help as best as we can.

Hi Jessy like everyone else l am very sorry to hear of your relapse, so l will tell you of my remission.

I too relapsed after ABVD. I was due to have 3 months of chemo followed by radiotherapy but as my cancer (stage 2) had many small sites it was thought to be inappropriate, so I ended up with 6 monthsof ABVD.

I relapsed 13 months after, and went on to have an autologus stem cell (own stem cells) transplant at Russells Hall hospital in Dudley. 

I won't go in to to much detail unless you request it, but the bit you will be interested in is my transplant was January 14th 2014, so I am 6 years plus in remission.

I was told the younger you are the much better chance you have and I am as from this March passed 64 years old.

So I hope you can draw some comfort from my story and if you need any more details do feel free to ask.

Best Wishes Bob

Hi Jessy,

I am really sorry to read about your relapse. I have a different blood cancer, but have some experience on how you can train your brain at this time. The first thing I will say is that there is no quick fix or silver bullet, time is probably the best healer that I have come across. I am guessing you might be spiraling a little bit and your mind might be whizzing around at a hundred miles an hour. If there is one thing I would like to have told myself when I was in that mindset, it is that there is no point in trying to predict the future - I have tried and been wrong so many times. The trick is to try to deal with what is front of you at each moment. I am not going to pretend that this is in any way easy and my goodness I have had my wobbly moments (which are absolutely normal and natural, even if sometimes completely frightening) all you can really do is to try to drag yourself back to the present and ask “What is in my control today?” 

I am really hoping this helps in some way. Everything is temporary, and the mental turmoil you might find yourself in now can’t and won’t last forever.

Greg

Hi moony, that’s amazing that your daughter finally got into remission. Who many relapses did she have before she got there? 

I live in Australia, and will be getting ICE, BEAM and a stem cell transplant from my own stems. 

I thankfully started young and have a little girl and boy already. But I found that the hardest part. I fear for my children growing up without a mother. But I will be going to the fertility clinic tomorrow to see if any eggs are saveable for the future. If I have a future. 
Sorry it took me awhile to reply. I’m just in a bit of a rough spot. I can’t think positively. 

That’s amazing. How did you make it through the low points? 

I wonder why I can’t get a Allo SCT transplant instead of and auto, I don’t have faith in my own cells  

I will definitely read everyone’s profiles from now on and update my own. 

I’m so happy to hear about that Bob. 

I would love for you to go into detail as it sounds like a similar experience to mine. And my faith is wavering that the stem cell transplant will work. 6 years + in remission is truly what I’m hoping for.

I have been told by everyone during this whole process that age is on my side and I’ll do great and beat the cancer. But I can’t stop thinking about if I was in that small 10% of relapse, how will I ever get through it this time.

I definitely think time is all I need. I only found out 6 days ago, and it’s the only thing on my mind, all day every day. 

I just watch my family around me laughing and happy and think how are you acting like this. How are you at such peace. 

It’s so hard not to think about the future, and my mind just won’t let me think in the now. I cry all day, I don’t even want to watch my children because I’m in the mindset that I’ll leave them soon enough anyway. 

I am going to a psychologist soon. So I hope that helps. 

Hi Jessy,

I think a psychologist will really help. It’s not like a magic pill that will fix all your problems overnight, but it worked for me as it allowed me some space to say out loud what I was thinking in my head and allowed me some space to work out how my brain works and give me some strategies which over time got me to a better place. 
Having young children at this time is really tough and I can empathize with all the thoughts that will be swirling round your brain. Mine were 8, 6 and 2 when I was most poorly. I would forever torture myself about all sorts of disastrous imagined futures - it was incredibly tough and the psychologist really helped me to see that there was little point in fast-forwarding to some imagined future - I came to understand that there is no way that I can know what the future is going to be and as much as I might hate it, I am not going to be able to control it, so just let it go and let it be. It took me a long time to get to that place, and it was a bumpy ride along the way, but I hope it gives you some small crumb of comfort that it is possible to get to that place, and you won’t always feel as bad as you are doing now.

Greg