I was diagnosed with classical HL in October 2016. Had 2 cycles of ABVD and got a clear scan. Had 4 further cycles of AVD - clear scan. Less than a year later, 7cm 'mass' in my chest. Lit up like a Christmas tree, as did a lymph node in my neck. Had a large biopsy (around 3cm) of the mass in my chest and it came back negative for lymphoma (thank God right?!) but left us in limbo. Further scan, lymph node in neck still lit up so this week i'll have that biopsied followed by another PET scan next week. My dr says if I have relapsed, it with be GDP chemo for me plus SCT.
I guess I'm after success stories? There might already be a success story link if someone can point me in that direction? Has anyone had GDP? What was it like? I head your hair may not fall out.... is this true? Is there anyone out there a few years down the line and living the life of their dreams.
I've been handling this really well and taken advantage of this 'limbo' stage that we've been in for the last three months.... but now it is coming to an end with this new biopsy and scan... I'm getting really scared and starting to lose hope.
Any advice would be most welcome.
Hi Shelley ssd and welcome to our little corner of the Online Community but as always sorry to see folks finding us.
I am Mike Thehighlander and I have been though two Allo SCTs with cells from my brother, I could not do an Auto (using my own cells) as my team could not get my NHL into a position for harvesting the cells.
So success stories? well everyone who will get back to you are a success story in some sort of way, for me I would not be around talking to you if it had not been for SCT so my story is very successful :)
Don't lose hope!........ in fact SCT gives us all hope. I was diagnosed over 19 years back with my rare NHL and was told that it would get me in the end....... fast forward 19 years the same people who said this are now saying that they hope I die of old age :)..... the SCT journey can be hard but it is very do-able and packed to the brim full of hope.
Don't look at figures, percentages and information on Dr Google as they are all out of date and most of the time can not be seen as an across the board view as in reality the SCT journey you could go on has only you in it. Keep to this site or other supported cancer charities.
I did not have GDP so will look for some of the others to help with it.
You can have a look through the various discussions by hitting the Discussions tab just above your thread title and have a look through as you will see lots of information and hope is a thread in a lot of them.
You can also hit our forum names and see some of our profiles, some longer than others ;)
The waiting is hard but in reality you can't do anything about it, it is what it is and if you end up going on the SCT Rollercoster then we are around to help out as we have been on the ride we are still around to help out.
Any questions, list them and we will do our best to help out.
Big Highlander ((hugs)) all the way from Inverness.
Mike - Thehighlander
It always seems impossible until its done - Nelson Mandela
Click to see how to add details to your profile
success stories? Well I suspect that some who have had success stay on here for only a very short while and then get on with living their lives!
im here as daughter (classical HL too) had a long illness (it’s on my profile) but is still here and though she has left over problems due to the after effects of all treatments, she does love life! (Also here on site due to my own problems-again in my profile)
i think the main message is to have hope, the doctors are getting pretty good at all this now, so the chances of you going on to a long remission have to be pretty good even though you’ve not got there yet.
Hi Shelley my name is Bob and here is a brief overview of my journey.
Diagnosed with Hodgkins Lymphoma 1st Feb 2012.
Stage 2A as from 09/02/2012
Treated Russells Hall Hospital,Dudley
6 cycles of ABVD
Remission from 26th July 2012
Relapse confirmed 27th Sept 2013
2 courses of IVE, stem cell harvest, course of BEAM.
Autologous transplant 9th January 2014.
So far so good:
I always follow the SCT area but don't often post as people seem to be facing allogeneic path.
The first part of the journey is generally the same, but people do face further challenges like GVHD
when recieving donor stem cells.
I am now 62 working fulltime, though I did cut down to a four day week recently, so I could be classed
as a success. I didn't see your age and I know it might not be that reassuring if you are much younger
but there it is if you need to know anything else feel free to ask.
I will add though if you loose all your hair, it will still come back and hair loss when fighting blood cancer is not seen as
a bad thing by Doctors, as there is a belief that the cancer can reside in the hair follicules.
So don't be worrying about that I was mousse grey and it has grown back dark. Who needs grecian 2000!
Best Wishes Bob
I love this bob... my husband has relapsed HL after 4 years... he had 9 goes of AVBD originally and it now about to face the ASCT same as yourself, he’s 55.... your a success story, thanks for sharing :-)
As moomy says, when we feel better we tend to get on with our lives. I try to help new people on the site if I think I have something specific to say, but I find that going all through my treatment in detail gives me unpleasant flashbacks. For my mental recovery, I am using the site less. Do look at my profile though.
It would be good to have a noticeboard of successful people, perhaps we can use this thread for that in future. But at what point does anyone decide it has been successful?
Briefly, autumn 2016 I was getting unexplainably tired, couldn't get round the supermarket. Diagnosed with AML in December, spent most of next six months in hospital. Allo SCT in June. Barely able to walk, eat. Afraid to go out in case I caught a bug. Very depressed.
Restarted some social life February 2018. Annual review in July showed my transplant has taken 100% but I still have depleted immune system and uneven stamina. Because of my age it may not get much better.
As many will tell you, illness is a chance to reappraise your life, see what is important and who has been supportive when you needed them. Sadly some 'friends' were quite a disappointment.
This morning I went to a new art group, and did a supermarket shop without panicking that I would catch something from someone, or pass out before I got to the till. I have pruned my diary of things I no longer want to do, so I have enough energy for the things I enjoy most. I've lost a lot of unnecessary weight and had a good turn out of old clothes and enjoyed being able to buy normal size replacements instead of having to look for plus sizes. My hair has grown back normal again. Everyone says I look younger than before I was ill.
So in some ways I will never be quite the same, but in other ways I am better than before.
I do love this post Tessa xx
Tessa that is very inspiring xxxxxx
*Learning God is in control and every day holds the chance of another miracle.*
I was diagnosed with AML last year so the fact that I'm still alive is a huge success story. (One year survival rates float around 20%). How long will I live? Who knows... I'm back to work and trying to enjoy summer activities while staying out of the sun. Tricky for a Californian!
oddly enough it’s been hard staying out of the sun here in the UK for about three months too! (I’m on an antibiotic that doesn’t like the sun -but only for a week at present!)
thinking of you and hoping you’re not in a flammable area of California, it sounds pretty dodgy there in parts....
Hi Moomy, all of CA is flammable. Currently San Diego County is not hosting any mega-fires so we've got clear skies. But you never know. We get such a small amount of rainfall that everything is super dry by summer and can combust easily. Summer lasts through October and sometimes until end of December so it's going to be a long fire season.
Whatever cancer throws your way, we’re right there with you.
We’re here to provide physical, financial and emotional support.
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