[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

[CarolsymonsParticipant]

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 before the saline and chemo and thanks to the 5 hours of saline I am up and down to the toilet!

Carol

[CarolsymonsParticipant]

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 said that as they have been separated into 3 bags, I will have 5 million cells returned to me on Wednesday. Now I have to be happy about that!

Carol

[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

[CarolsymonsParticipant]

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 again. If only they just gave you chemo but apparently I will also be given antibiotics, anti fungals, anti virals, anti nausea etc etc….not to mention possibly blood transfusions (which I have never had before) and platelets, neupogen injections to encourage white cells to grow….I guess they will jab my stomach with tinzeparan to prevent blood clots….aaaaaargh!! So enjoy your drug free intermission…long may it last! As you can gather I am NOT looking forward to the transplant game I have I play!

Carol

[CarolsymonsParticipant]

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

[CarolsymonsParticipant]

Tom

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

Carol

[CarolsymonsParticipant]

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 vegetables helped me I believe. I didn’t cut out any food group and only took a calcium and vitamin D supplement. It all must have helped as my stem cell collection was a breeze and the doctor told me they collected 15 million cells per kg. I am claiming that as a record!

Carol

[CarolsymonsParticipant]

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 done to Stewart anyway and best of luck with the new job.

Carol

[CarolsymonsParticipant]

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 before transplant, but if the blood test shows my numbers are up again I will be delaying the transplant. I think I will be chasing your carfilzomib trial. Even if I end up with Velcade it is a drug I haven’t tried so either one would be OK. That is provided the Velcade doesn’t leave me with neuropathy.

Carol

[CarolsymonsParticipant]

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 on the Sunday before collection and do another double injection on the Monday morning of collection day. However after I spent some hours crying with bone pain on the Friday afternoon, I emailed the doctor asking not to do the double injections due to the pain. Thank goodness she agreed so I just did the 1 injection on the Sunday and none Monday morning. I hate to think how many millions would have been produced if I had doubled the Neupogen….not to mention the PAIN!

I am back to work tomorrow after the school holidays, but I was unable to work while on the CTD regime. I went back 3 weeks after I finished the CTD, but then was off again for the high dose chemo for collection. So really I have only worked for 4 1/2 weeks in the last 9 months.

I have a pre-transplant app’t for 15 January with transplant the following week. So after 9
months since dx, it all seems to be moving forward really quickly now.

Carol

[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

[CarolsymonsParticipant]

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

[CarolsymonsParticipant]

Hi Tom
Have a great holiday! I had trouble logging on as well a few weeks ago, but seems to be OK now. Good luck with your treatment when you start. I am still waiting for transplant appointment.

Carol

[CarolsymonsParticipant]

Hi Izzie

I was diagnosed in April 2013 as well. After initial therapy with CTD (cyclophosphamide, thalidomide and dexamethasone) my paraprotein was undetectable, but 3 weeks later when I was transferred to Hammermith Hospital London to start the transplant process, my paraprotein had
already crept up to 4. However they still went ahead with the high dose chemo and collected my stem cells. I am now waiting for app’ts for the stem cell transplant. Are you choosing stem cell transplant? If so I would have thought a paraprotein of 2 would allow that, but maybe you are on the trial that is looking to postpone the transplant.

I refer to my myeloma enemies as “gremlins” and while I was really depressed when my paraprotein returned after only 3 weeks off treatment, I believe that to defeat this evil disease, you have to bounce back with a steely determination to beat the enemy just as others have described. Nobody ever told me that controlling this bloody disease would be easy and it is not! But we have no choice!

Carol

[Author]

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