[CarolsymonsParticipant]

Hi all

Well I have collected plenty of cells (15 million per kg) and have a tentative transplant date of 22 January after pre tests on 15th. So off to work I go on Monday for a couple of weeks. I wonder how all of you are faring?

Carol

[dickbParticipant]

Hi Carol, I only managed 10M /kg so you did very well, I am having tests this week, so far I’ve had heart – no problem, lungs – a bit of a shadow on the right lung but the medic doing the test wasn’t worried as I had cycled up a steep hill to get to him. ENT on Tuesday and hand in the urine, stool samples on Friday. It’s all go. Oh yes, get the report from the dentist on Monday.

[Ang287Participant]

Hi everyone, Graham now has his date for going in which is Monday 27th January after going to hospital on 24th to have his line put in. It seems a long time off but I know it will come quickly. Graham’s date is therefore nearer to your’s Carol and by then Richard may well be leaving hospital and ready to go home. Graham has been having quite a lot of hip pain recently but it had subsided again yesterday so he went for a little walk but in pain again today and also started having leg pains when in bed at night which only started on New Year’s Day and are disturbing his sleep. I may ring the hospital tomorrow for some advice on what he can take to help the leg pains.
He is back at work tomorrow so just three weeks left until he goes in for the SCT.
I have found a support group locally and I am going to ask Graham if he wants to go to a monthly meeting where he can meet other people with myeloma and hopefully see a lot of people who are in long term remission but not sure if he will be up for this yet.
Best wishes to everyone and good luck for next Friday Richard.
Angela

[dickbParticipant]

Thanks Ang,

The support group we attend here in Germany is fantastic, they know how bad my German is but they are always positive and willing to help. The big thing is that someone there has gone through what we are going through and no matter how vague or weird a side effect may be, there is always someone that has had it and knows how to deal with it. Like most things, the hardest part is starting, once Graham has gone the first time, it will get easier for him.

[Ang287Participant]

Hi Richard
Had problems posting on here last night so had to post to you elsewhere but just want to wish you good luck for today and hope your treatment goes smoothly and that you are soon on the way to recovery.
Best wishes from Angela and Graham

[Nanna59Participant]

I just want to wish everyone going through Stem Cell transplant at the moment lots of love and strength. It’s a hard time but you come out the other end and soon forget the awful days. I had my transplant in September and am now in remission so hang in there!
God bless
Chris x

[CarolsymonsParticipant]

I am going into hospital Sunday, melphalan Monday and stem cells returned Wednesday…..wish me luck -I feel I may need it! Feeling vey anxious now as the time approaches.

Carol

[Ang287Participant]

Hi Carol
My husband is just a week behind you. He goes in the following Monday and has Melphalan on the Tuesday and stem cells returned on the Wednesday. Good luck for your treatment and let’s hope you both have a long remission after this.
Best wishes, Angela

PS I wish Graham was going in on Sunday too so that he would be recovering sooner ready for a nice Easter and Summer.

[CarolsymonsParticipant]

Melphalan done and dusted, stem cells tomorrow….around 450 million of the little blighters (5 million multiplied by my 90kg weight approx.) so may be infused over 2 days. So many prophylactic drugs though -3 different anti-emetics including one through infusion, anti biotic and anti viral. I guess they are necessary, but would rather not have them as they all come with side effects…I will try to reduce or remove the anti emetics tomorrow and see how I go. Just feeling a bit wobbly and spaced out from the melphalan but otherwise all is good here in my little room in Hammersmith Hospital, London.

Helen, I am hoping to return to work again after Easter and Australia by July, so was anxious for the transplant to be done earlier, but when you are in the hands of the NHS (not that I am complaining your health service is truly amazing) you learn to “go with the flow” as we would say in Australia…is that a saying here too?
Carol

[DizzylizParticipant]

Hi carol,

Thinking of you over the next few days hope it all goes well and the side effects aren’t too bad.

Take care love liz xx

[CarolsymonsParticipant]

Thanks Liz….had a bad day yesterday with a bit of vomiting, but today seem better better after they hit me with an extra anti nausea shot! Am only 2 days post transplant so they keep telling me to expect worse things to happen…like temperature signalling an infection, mouth sores and diarrhoea but so far none of this has eventuated. I had to have my first ever blood transfusion yesterday…..scary -also intravenous immunoglobin and IV calcium, so it seemed that all day something was being dripped into my veins. Today nothing yet but probably just because blood tests from this morning aren’t back. Keeping my fingers crossed for a better day today, before the immunity crash expected tomorrow or Sunday.

Carol

[DizzylizParticipant]

Hi carol,

It seems such a long time since kev had his sct but I can remember he wanted to sleep a lot,
But he also remembers the nurses & drs bombarding him with tests blood transfusions Ect: but I kept telling him it’ll all be worth it but then he’d fall asleep! Hang in there carol and here’s hoping the next few days won’t be too bad,

Take care thinking of you liz & kev xx

[eveParticipant]

Just wanted to say good luck to everyone,although it’s a big thing for the individual having this procedure ,ita an every day thing to the staff,expect to be emotional and do not worry if you have an odd accident,nothing they have not seen or done before.

It’s a bit lonely in isolation,so make sure you have home comforts around you,this is the first step of a journey,treat it as a major operation will take time to feel well again,but won,t it be nice to be Chemo free. Best wishes Eve

[CarolsymonsParticipant]

Well I have reached day+5 after transplant and am officially neutropenic. Have had a little nausea, burning oesophagus, now some difficulty swallowing, no appetite whatsoever and diarrhoea, but all in all this has been manageable. Now I am neutropenic I am told to expect the temperature spike, which unfortunately will be followed by a tsunami of 3 different antibiotics dripped into my veins for 5 to 7 days. Not looking forward to that!

No mouth ulcers yet, so maybe the ice lollies do work!

Carol

[Ang287Participant]

Hi Carol
Hope it’s going as well as it can at the stage you are now at. I read out how you were doing to my husband so he would be prepared for when he was due to go in yesterday and glad to see that 5 days after transplant you are finding it manageable despite all the side effects. We were still packing Graham’s bag at midnight on Monday but on Tuesday he woke up with a chest infection so transplant has been postponed and he is now at home with antibiotics. If he is well enough he will go in next week so he just has to rest now and hope that it clears up soon. It’s so disappointing though when you have had this date in your mind for so long and he has been so well up until now.
Hope to hear from Richard soon who went in on 11th January – I bet he will be ready to go home soon and we hope it has all gone well for him.
Angela

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