SCT Success Stories

Becc, this is a great encouraging thread so go back to the start and take time to have a look through it and be encouraged xx

Hi Shelly & Becc,

I hope you are both coping ok? I would like to give you some hope with my story and that you can get through this.

I had Classic Hodgkins stage 4B diagnosed in August 2014. I had clear PET scans throughout my ABVD chemo but relapsed 3 months after finishing. I then went on to have ESHAP & IVE salvage chemo which put me into remission once again ready for an Auto SCT. I recovered from that pretty quickly. My son ended up in hospital with RSV 3 weeks after I was discharged and I was back and forth to the hospital for him more than myself!

I relapsed again a few months later and had Brentuximab as a bridging treatment ready for an Allograft SCT. The brentuximab shrank a lot of my tumours but I still had a stubborn spot in my chest and went into my second transplant with active disease. My consultants assured me there were other success stories of people in the same situation which gave me hope as it should for you both.

I had a clear PET scan 10 weeks after my transplant and another clear scan 3 months after that and have been clear of disease for 2 years now.

The worst part is the not knowing if the next stage of treatment is going to work or not but if you can just try and stay positive, concentrate on one day at a time and try not to think too far ahead it definitely helps!

Good luck to you both,

Lucy x

Wow Lucy. I'm so sorry you had to go through all that. I've heard of this Brentuximab many times and wonder if I should ask for it after my auto as a bit of a safety net. I've heard that has been the case for some 'high risk' patients although I'd have to ask my Dr what they consider high risk.

I start GDP chemo (which nobody seems to have really heard of???) on September 7th. I dont know what to expect from it as so many people had something different. I do wonder how drs decide what chemo to give you. I  asked my Dr and he said it's much of a muchness. No specific reason really. I dislike those kind of answers. I like things to fit together and make sense in my head... but then I suppose cancer never really makes sense does it!

Thanks again for your story. X

Hi,

yes I've heard of GDP, and know it as a chemo regime to try and reach a stable remission pre-transplant. 

Brentuximab is a relatively new treatment, a sort of antibody therapy, finds the cancer and delivers a poison to it, some respond incredibly well to it, some get some response but not a huge one (daughter got her first ever remission in 7 1/2 years with it) and USA harmatologists are using it as a maintenance therapy post auto SCT to hold remission. It can also work well combined with an old chemo drug, Bendamustine. 

I hope GDP treats you well and gets you ready for a SCT. That’s tough but do-able, and as your HL is chemo responsive, I guess you’ll do well. 

Keep posting

Hugs xxx

Good morning , I went on a little research and found some information about GDP. It has been around for a number of years with one of the references back in 2010 and these are some of the info sheets:

Christie - GDP Chemo

Macmillan - Gemcitabine and cisPlatin chemotherapy

Cancer Research - Gemcitabine and cisPlatin chemotherapy

Cancer Research - Dexamethasone - Steroids

I did once ask my team how they come to make a decision on treatments and they said '....its often to do with genetic markers, how the condition is presenting, past success records with other patients, recommendations from other consultants....... or a toss of a coin!!!'

((hugs))

Oh Bec.... i'm so sorry you are in this too.  When I first found out something weird was happening with my scan at 12 months (the one the dr didn't even want to give me and that I had to beg for) I was utterly devastated.  I could not pick myself up off the floor for days.  I had major panic attacks (something I have not suffered with previously) and feel like, for just a few days, I legitimately lost my mind.  I suppose we would say I went into shock.

I'm doing much better now.  It's taken months to get to this point and as scared and worried as I am, I'm also really proud of myself for knowing my body and knowing something was not right.  

My appointment with the dr last week was not great.  I go to Derby hospital and all the drs and nurses I've met so far are fabulous (and very happy - all the staff at Derby are really happy and smiley from the cleaners, porters, reception staff, HCAs, nurses, drs, surgeons... it's like there's something in the AC there.  One surgeon even introduced himself to me with his first name which has never happened to me before!).  But at this new clinic (I used to have ABVD and appointments at my local hospital but they don't do second line treatment so I've been moved to the city hospital in Derby) you don't have your own dr and nurse.  You are in a team of drs and you just see whichever one is working on that day.  I don't like this set up too much.  The first dr I met was wonderful and positive.  I told him I NEED positivity.  The second dr I met was also positive.  I asked him, if this is a relapse, are we still looking at a cure and he didn't hesitate and said absolutely!  Then I finally got it confirmed last week with this third dr, who was of course lovely, but when I asked her about being cured she looked at me, took a deep breath, breathed out, paused and then said 'potentially'.  I WAS GOBSMACKED! This is the first time i've met a medical professional that wasn't utterly convinced that I am going to beat this and live a long, happy, cancer free life.  And I didn't like it one bit.  You can call it burying your head in the sand but with odds of 60 - 70% (I know, I know, there's only ever 50 / 50 in anything, you beat it or you don't.  and frankly, with being told i had a 97% chance of being fully cured the first time around and relapsing less than a year later - odds don't mean all that much) I felt like she could have been more convincing.  Why would you send someone into battle without promoting the most positive mindset you can?!  It didn't make any sense to me.  

Sorry, I've really gone on a bit here haven't I!  I didn't realise all of that was in there until I started typing.

Anyway, please let us know how your biopsy results have gone.  I'm thinking of you and hope that we can be a great support to each other over this next phase of our cancer journey.

Cheers,

Shelley 

Shelley, remember you are a statistic of one and all that matters is how your journey goes, just like Bec's journey.

Away back in 1999 I was told that my type of Lymphoma would kill me....... fast forward 19 years my team are now saying that they would be very surprised if I die of my NHL.....I could have asked them to clarify that and as I have a team of consultant in the SCT unit they would have all said different things so why worry about something I just can not control.

I was discharged from the care of my SCT team in June....... initially that was like someone taking away my favourite chair.... but my consultant said 'over the past few years we have started to discharge folks to go live their lives and we don't want them to be looking over your shoulder every time a letter comes in - you know what to look out for and you know where to find us'

Lets all get through this rollercoaster ride and out the other end ((hugs)) all round xx

Just comparing experiences with doctors. Several at my hospital use their first names, usually when their surname is 'difficult', but often with Dr in front. The consultants are all Dr 'surname'.  Never knew who I was going to see on the rounds when I was inpatient.  I can only think of one I didn't like. At outpatients it is a pool of doctors/consultants/specialist nurses, all excellent.

I have always been very impressed that even doctors I barely met seem to remember you as an individual. I think that is remarkable bearing in mind the number of patients they see. I had a similar experience with my GP a few years ago - she remembered (I didn't) that I'd had the same problem five years before. I'm not sure they always remember your name or your face, but they seem to remember your particular collection of symptoms.

When I had 'the chat' before my SCT, the consultant said she would not sugar coat the news. Short term it was risky, but if I could survive that, there was 95% chance of long term remission. I don't think they ever promise 100% cure.

Personally I think it helps to strike a balance between being positive and being realistic. We need to cultivate resilience, and not fall apart if we don't get the perfect outcome we hoped for (I say that as a past perfectionist, its taken a long time to change). Yes I seem to have beaten the AML, but at the cost of feeling ten years older. That's better than the alternative.

I've been to GP surgery today to try to plan all my revaccinations. Then I went and bought spring bulbs for the garden. Good to keep looking forward.

Tessa

Hey Tessa, congrats on your remission!  

I don't think a any amount of anything (being realistic or otherwise) would prepare me for the devastation of this not working and being told I'm going to die.  Hence, I'd rather go into it truly believing I can do it.  Right up until the very last moment.  But horses for courses and all that.

Tessa it is always great to hear from you and your posts are always so open, honest and very encouraging........ keeping an eye on the 'greater good' it so important on the Stem Cell Transplant Magical Mystery Tour.

Big step for you getting your revaccinations.... I can't remember which ones but the nurse said 'tell me if this is sore as the children always cray at this one'...... 'yes it was sore' was my reply....... 'I always wondered this, now I know they are not being wimps' :) :) :) 

((hugs)) Tessa