[tallulah55Participant]

Hi Everyone

I haven’t posted for a while for several reasons, partly as I ‘ve been trying not to think too much about Kevin’s forthcoming SCT in his two months after coming off the CDT and secondly life has been v busy with all the prep and us both getting lot of work done before the process.

Pleased to say life has been somewhat normal and we had a fabulous weekend celebrating Kevin’s birthday just now- lunch at Raymond Blanc’s ‘s Le Manoir and a big celebration with friends and family in the evening. It was good to see Kevin having a good time, he has been quite low during the last months despite being physically fine but now seems to be back  in good spirits. I had hoped when he finished treatment he would enjoy the two months of normality bug gift him the reverse has been true and h has been pretty anxious. Levels overall, his para protein reduced 95% overall through CDT, stabilised at 6 and SCT commenced this Tuesday. So far so good, melphalan was tolerated well and stem cells Day Zero, today. So far so good. A really lovely specialty doctor at our hospital who is  responsible for all the coordination has spent time one to kind chatting with Kevin and this has really helped him and he feels v well looked after in our hospital, The Freeman, in Newcastle.

However, I am wondering for those who have been through SCT, when do the effects start go kick in? Kevin is pleased he still feels so good although I’m thinking ‘ that will all change soon’. Managed to get him a single room at the hospital which was very much his preference, he has his own pillow, laptop to work when he wants and all the home comforts he wanted and I’ll be renting a pleasant apartment near the hospital from tomorrow so hopefully had can have time out when had can as we live 50 miles from the hospital. He still wants to read as little as possible about all this and just take one day at a time which is his way, but I know I’m worrying about the inevitable effects soon.

I’ve been prepping big time though so Kevin has got in the habit of mouthwash after each drink, he’s still managing 3l of fluid a day, the toothbrush is soaked in Milton and he is getting into the habit of very regular hand washing, so far so good! As I’m a bit OCD about cleaning this but I actually quite enjoy .Pleased to see you are continuing with your good recovery Carol.

Thanks everyone

Nicki

[jcr2468Participant]

Hi Nicki

The fact that Kevin is still feeling so well is very much a positive. Obviously everyone is different but my experience of SCT was good. I felt well all the way through, I had a bit of sickness after the Melphalan but the nurses helped control that for me. I was very tired for a few days (probably when I was Neutropenic) but otherwise I was up and about.

I stayed in hospital for 15 days and then carried on my recovery at home. This was all 3 years ago, I relapsed earlier this year and had a few cycles of Velcade. I’m now drug free and my levels are at 1.9. hopefully they will stay low!

I hope Kevin stays well

Julie

 

[keithmtParticipant]

Hi Nicki,

After my SCT in April I had 2 days of feeling absolutely fabulous. Then the Melphalan kicked in and over the next 3 days I started to feel fairly grotty and was ready to be admitted to hospital. I continued to feel a bit worse day by day for the next 3-4 days but then started the big climb out.

I would say I finally started to feel sort of “normal” (appetite back, taste back, digestive system working) by day 50 but of course everyone is different.

Best wishes for a smooth journey for Kevin, he’s absolutely right to take one day at a time.

Keith

[tallulah55Participant]

Hi Keith

Thank you so much for your reply and indeed I have been following your posts since your SCT too. it’s good to see that you are doing well and it was interesting to have details of your journey so far.

Actually Kevin’s progress so far seems to be similar to yours – now its Day 2 after having the stem cells transplanted and he is feeling pretty rough today – incredibly tired and a bit nauseous, but he is in good spirits and sleeping a lot, best thing no doubt. I’m telling him that probably this next 5 days will be tough but then slowly he should be getting a bit better every day, fingers crossed. At least so far his vital organs are fine – this was a huge worry for the consultant as he only has one kidney following previous unrelated kidney cancer, but touch wood, he is managing to keep up the 3L of fluid a day he is used to and the kideny is functioning perfectly.

At least we both work from home and have a downstairs bedroom and bathroom which will help when he comes home.

Just wondering Keith – did you get any infections /sepsis at all? Kevin’s consultant says he will definitely go into sepsis, we would love to prove him wrong and Julie’s reply to my post confirms that not everyone does go into sepsis!

I hope you are continuing  to recover – your timeline is helpful thank you and thank you again for your good wishes.

Nicki

[tallulah55Participant]

Hi Julie

 

Thank you so much for your uplifting post – so good to hear that your experience of SCT was pretty positive overall and that you did not suffer any infections – did you take any particular precautions re infection control? I’m very obsessive anyway about cleanliness – I’ve just been totally disinfecting Kevin’s bathroom and bedroom for when he comes home and he is very good at washing hands before eating, after going to the bathroom etc so hope this will help. I have a best friend who is an infection control nurse and she tells me that just using hand gels is ineffective for a lot of gastro-intestinal bugs and that soap and water used properly is much better so I’ve been trying to drum this into Kevin!

It’s good to hear how good your levels are since Velcade, I wish you continuing good health.

Thanks again

Nicki

[keithmtParticipant]

Like Julie, I had no infections or sepsis Nicki. They did find an infection marker in one blood test whilst I was in hospital but they instantly put me on antibiotics which god rid of it before it developed into anything.

I have to say, my whole SCT experience was very uneventful, I didn’t event feel much nausea. I counted myself very fortunate that I was only in hospital for 6 days and I’ve improved every day since then. Melphalan is a bit like swallowing a hand grenade but the human body can do amazing things to recover. I’m still relatively weak but am planning a trip to the Austrian Grand Prix in a couple of weeks and I’m sure I’ll be able to cope just fine. Certainly looking forward to the bratwurst and apple streusel which is something I couldn’t imagine just a few weeks ago.

Kevin will be fine, just remember better days are to come.

Keith

[CarolsymonsParticipant]

Yeah! Finally the website allowed me to sign in. I gave up trying about 6 weeks ago. Not everyone gets an infection or sepsis. The consultant told me I definitely would as “everyone does” but I didn’t. I did have a temperature spike when my neutrophils were low and they hit me with IV antibiotics which I didn’t want but dared not refuse. After a day of normal temperature they stopped them. I had a bit of nausea and vomiting which they controlled with IV and oral medication, a few days of diarrhoea, an incredibly sore oesophagus which did stop me even drinking for a few days and I couldn’t stand even the smell of food for a few weeks. When I couldn’t swallow they gave me saline and I kept rinsing my dry mouth with iced water. A couple more days after that I just had cold milk but slowly my appetite returned and now 4 1/2 months later, food is my favourite thing! I went back to work on a phased return after 3 months and am now full time. But there are still some days when I need an afternoon siesta, so the fatigue lingers longer. I think SCT is a little like childbirth….it is best if you ignore the horror stories and go through it expecting all will be OK. I know everyone is different and I am lucky as I don’t have any bone pain (well if I am honest my collarbone that the myeloma gremlins ate, occasionally gives me a twinge or 2, but not enough to ever need pain killers) or kidney damage but honestly the CDT made me sicker than the SCT.

I didn’t fuss about hygiene either when I came home, just the usual clean flat and hand washing with soap. I did stay home for the first month, ate whatever I felt like (nothing pleased me for a few weeks) and I have had no infections since the SCT.

Carol

[tallulah55Participant]

Thank you  Carol and apologies I haven’t had an opportunity to reply until now. I think everything you said has been very valid and helpful and so far Kevin’s experience has been similar to yours I think except his mouth has been fine except for a little thrush.

Re your analogy with childbirth I think Kevin now has a lot of empathy for expectant mums experiencing morning sickness!

thanks again

nicki

[jcr2468Participant]

Hi Nicki

Sorry I haven’t replied but i’ve been sunning myself in Portugal! Don’t get too obsessed with cleanliness, i have just carried on as normal. I have had the odd cold but then don’t we all, if we worried about bugs or infections i don’t think we would go anywhere or do anything.

I do have issues with going into swimming pools as I think if i’m going to catch anything then it is more than likely where a lot of people have been.

Hope Kevin is keeping well

 

Julie

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