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…[Read more]

Thanks everyone
Well I did the ice thing and have no mouth sores yet, but I am only up to day 2 since transplant, so not out of the woods yet.

Mandy.I am so scared that I will go through ths transplant and then only get a short remission…. 7 weeks – that is worrying! It is such a gamble but I felt I had to take the chance.

Carol

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…[Read more]

I agree that the NHS treatment is very regimented with no individualisation as in America. I do not even know if cytogenetics (FISH test) have been conducted in my case so am I low or high risk? Nobody has told me. It seems that unless you chase up a trial, everyone gets CTD…which I do not see used for first line treatment in America. Even…[Read more]

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…[Read more]

Goodness Helen I weighed 92.2kg this morning (thanks steroids and a husband who “encourages” me to eat) so is that 92.2 times 5 million? Astounding! They had darn well better work exceedingly well and exceedingly fast or I will be exceedingly frustrated!

Do you see the time I am posting this? That’s cos they hit me with intravenous steroids…[Read more]

Hi Tom

You always post so positively! Even though I am pumped full of drugs as I have had my melphalan plus so many other drugs today, I have to share my good news about my stem cells.

I have boasted about my 15 million collected cells elsewhere on this forum, but today finally had a chance to ask a consultant how they will be returned. He…[Read more]

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

Isn’t it great to be off the drugs? Even though I had etoposide (high dose chemo) on 11 December and stem cells collected on the 23rd I still feel pretty good. But….all that is about to change as on Monday I will be poisoned with melphalan in preparation for stem cells returned on Wednesday. Not looking forward to being ill from the drugs…[Read more]

Hi Tom

You are my shining light …..always so positive – I hope all goes well with the Velcade….watch for neuropathy – many people seem to suffer that with Velcade from what I read. Your 4 years remission after SCT is what I keep in the front of my mind as I am being admitted Sunday for my SCT….melphalan Monday-aaaaaaaaargh!

Carol

Tom

Harrow is the closest centre to me too -but not within walking distance. Were you able to get any information from them?

Carol

I feel tired often but not to the extent you describe. It is odd that your blood tests don’t show anaemia or any thing else that would account for it. I think that the reason I went through initial drug treatment relatively well was that my husband kept insisting that I eat even if I didn’t feel like it. So lots of fresh food, fruit and…[Read more]

But….if you had been honest up front, would Stewart have been offered the job? That is the million dollar question! At my work they employed a woman who was 5 months pregnant but claimed she didn’t know till a week after she started work (and it was her second pregnancy so I am sure she knew) I toonwonder what the legal situation is? Well…[Read more]

Hi Deborah

My numbers started rising after only 3 weeks off the initial treatment which was CTD. I wanted to go on the PADIMAC trial to access Velcade but unfortunately my consultant dissuaded me. I still beleve velcade would have been better than CTD for knocking my lambda light chains down.

On the 15th of jis month I am having pre tests…[Read more]

Hi Liz & Kev

Yes I am still amazed by the collection millions..I haven’t read of anyone else with that number, but haven’t seen a doctor since, so don’t know why the collection went so well. Fortunately I am someone who asks lots of questions cos when I had the blood test after 7 days of Neupogen injections, the doctor told me to double them up…[Read more]

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

Hi Izzie

Enjoy your holiday and don’t worry about your paraprotein rising. Many people have months or even years in remission without a transplant. I was just one of the unlucky ones to lose remission so quickly.

Carol