SCT Success Stories

Hi Alissa, 

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.....

hugs xxx

Morning all,

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.

Regards

Mark

This is great Mark.

Hi 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

Thanks sophie 

Hi Sophie,

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. 

Regards

Mark x 

Hiya Mark

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 , 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.

hugs xxx

Hi Guys,

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.

Regards

Mark

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.