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Don't look at figures, percentages and information on Dr Google as they are all out of date and most of the time can not be seen as an across the board view as in reality the SCT journey you could go on has only you in it.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.
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
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.
daughter did tv hosting for the ITF in CA a couple of years back and she had fire smoke behind her in the distance, it worried her somewhat though all was well. It was the summer after CA had rain and the growth and then demise of undergrowth probably made it worse.
We visited and stayed with her friends in LA the previous summer, possibly before the fire season properly began, and the valleys were still relatively verdant. I suspect we also hit a cooler time, between two really hot spells. They recently moved so hope they will be ok. Plus I’ve a nephew who lives in Hollywood.
Scary! Hope you stay safe.....
All this talk of sunny California Alissa is making me want a holiday. We were supposed to be in Italy now but have had to postpone until next year, still living in Devon it’s not too bad and we’ve been having days out with the kids. Bought a couple of fishing rods in the week (kids idea not mine) and had a couple of days fishing off the beach in Exmouth. Everyone enjoyed it and we even had a big seal come and say hello to us for a few minutes which was magical for the kids.
Anyway I thought I would add my Autologous SCT journey story so far.
Late 2016 started feeling tired with itchy skin and night sweats and visited my GP a number of times. Treated for depression/anxiety and even sent for counselling.
June 2017 Swollen lymph node appears under my arm finally referred to hospital and biopsy taken.
Aug 2017 DIagnosed with Classical Hodgkins Lymphoma and started ABVD chemo.
Oct 2017 Pet scan after 2 cycles showed the area under my arm had cleared but new areas were showing on my spine and lung.
Oct 2017 Sent for CT guided biopsy on my lung only to be told the area had cleared and was probably infection. Lump under my arm appears again during the period of waiting.
Oct 2017 Sent for second biopsy under my arm which confirmed Hodgkins was still present and advised to switch to BEACOPP.
Nov 2017 Start 4 cycles of BEACOPP.
Feb 2018 Pet scan which showed the lump under my arm had completely gone but the areas along my spine were spreading and growing. Moved to Brentuximab with the aim of getting me into remission to enable a SCT to take place.
April 2018 Pet scan which showed my under arm to be clear, existing areas on my spine to be clear but one new area higher up my spine. Advised to have further treatment of BV.
June 2018 Pet scan showed me to be clear.
June 2018 Started my six days of conditioning therapy with BEAM
July 2018 Discharged on day 17 with no real issues. Suffered with nausea for a week or so and needed one bag of platelets throughout my whole stay, so not complaining. I had prepared myself for a tough physical battle and thankfully it didn’t really happen with no mouth sores etc, for me in the end the biggest battle was and still is mental. I know Mike, myself and others keep referring to the battle between the ears but I honestly believe if you can get your mind in the right place it makes a huge difference.
I am now at home feeling ok but I have picked up a cold and chest infection from my youngest which is not ideal as I have another Pet-scan tomorrow so my chest might also light up like a Christmas tree but I’ve learnt to stop worrying about things like this. A friend of mine is a PT instructor and she has booked me in for a couple of hours of personal training this week to hopefully enable me to start and regain my fitness and then I am hopefully starting back to work the following week and building from that.
With regards to SCT success stories, what time needs to pass before it becomes a success, 2, 5 or even 10 years, I don’t know. We are all here with very different stories and greatly differing prognosis. For some they would probably take 5, some even less. During my lowest point, I couldn’t see beyond 2018, I honestly felt that low and it was horrible so now I intend to take what ever it offers me with open arms and enjoy it (not sure about the fishing though) .
I believe it was Greg’s consultant who told him that it was his job to keep him alive long enough for it to be something other than his his cancer that killed him, I think we would all happily settle for that.
Enjoy the rest of the weekend guys. We are heading out for lunch with the In-laws so today I will be mostly eating and drinking, all low fat, sugar free and non alcoholic of course.
I will let you know how my scan goes.
This is great Mark.
my husband has relapse classic HL so will be having an ASCT like yourself.... he’s having his at London College University Hospital.
its really good to see that your doing great and thinking of starting back at work already, your only a month out of hospital arnt you?
Any tips on the process? I can see you have children? We have a 2 year old and a dog... I’m worried about infection and already starting to act a bit OCD with the cleaning!
I get the mental struggle I worry about every little thing with my husband ... and I can’t imagine the torture he goes through in his own mind... all we do as a family is love and look after each other, it’s all we can do xx
We too have a dog along with three children aged between 7-13 so germs is always a worry. My youngest has had a bad chest infection for a couple of weeks now which I have picked up over the last few days, otherwise I’ve been ok. We have put bottles of hand steriliser all other the house and ask the kids to use them regularly otherwise for me it’s just being about following the basic hygiene rountine. I think you can get paronoid about it and over do it but if you apply common sense then he should be ok.
With regards to the procedure itself, try not to focus on the “what can go wrong” stories as these are more a rarity than a common occurrence. I was prepared for a major physical battle which thankfully never materialised. I was treated at the RD&E in Exeter which only does about 20 SCT pet year so whilst I was on the ward there was only 2 other people having an SCT, one for Non-Hodgkins and the other for Myeloma I believe. The guy treated for Myeloma was post transplant when I was admitted and did not suck on ice during the administration of the melphalan and was unsble to eat for over two weeks. Both myself and the third guy having a SCT sucked on the ice and neither of us suffered any mouth sores at all and he was even discharged on day 11 with no issues. We keep in touch and he too is doing well with the only real issue for both of us is fatigue, one minute I feel fine, the next I could sleep for England but it’s just a matter of listening to the body.
With regards to the mental aspect I do honestly believe it makes a huge difference. There will be times when it gets lonely in that room but I tried to never sit in silence so with the exception of bed time I would have my radio playing just to try and keep my mind occupied. Technology we fortunately have now also helps break the boredom and I would often FaceTime my family or friends, talk to the nurses or auxiliaries on the ward or I would often just sneak out of my isolation to chat with the guys in the other rooms. I met some lovely people in there who will stay my friends for life and in a strange way I sometimes miss them, I miss it, I miss the laugh, I miss the swapping of childhood memories, I miss the comradely but I don’t miss the hospital food!
Right must go, time for pitch and putt golf with my youngest as the rain has finally stopped. Any specific questions then please ask but you appear to be doing all you can and to quote “all we do as a family is love and look after each other, it’s all we can do” and you’re right, it’s not your husbands fault, it’s not your child’s fault and it’s certainly not your fault so keep doing what you are doing. Never stop fighting and never ever stop believing. I honestly wish you all the best of luck.
thanks for the message...lots of great advice
I will 100% keep the ice in mind, that sounds like a must. Where did you keep/access the ice whilst in your room having your chemo?
So good to hear your possitive storey :-)
Hi Bellabing, for me my team had a stock of ice poles and took them through for me when they were required. Some folks had fridges in their rooms with a small freezer section and those where the hospital for some reason did not do the ice pole thing their family took them in and the staff kept them in the ward freezer until they were required.
We were also given a shelf in the ward fridge to keep stuff my wife had taken in for me and we also had access to a microwave.
Keep a list of these questions so you can ask them at your next appointment.
7 year remission and post allo check for daughter? All is ok (well, apart from poor sight needing glasses, arthritis and an extremely low immune system, that is!)
shes going in on Monday for a check to see if the allo has changed her system in that she might not react to certain drugs any longer, primarily the penicillin group. Hopefully they will have meds to hand in case she does react of course! Will be interesting to know the results.
Monday seems to be a busy day for a few of us. I’m in hospital to get my latest scan results on that day also but if I’m negative following this chest infection I will be gob smacked!
Good luck Moomy and Sophie.
All the best for Monday everyone and I am sooooo interested in your daughters test moomy as I am in the same boat with regards to Penicillin so please tell about the tests they do.
Whatever cancer throws your way, we’re right there with you.
We’re here to provide physical, financial and emotional support.
© Macmillan Cancer Support 2020
© Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man (604). Also operating in Northern Ireland. A company limited by guarantee, registered in England and Wales company number 2400969. Isle of Man company number 4694F. Registered office: 89 Albert Embankment, London SE1 7UQ. VAT no: 668265007