I had an appointment today at 3:30pm normally my appointments are in the morning, but because this one was just for a discussion with Dr Lee to find out what I was going to do in the interim period while I wait for my Stem Cell Transplant, there was no need to have bloods taken and wait for results etc.
However there was a surprise when I got there, not one of those good surprises like surprise you have won £1000 but a surprise that I was going to have my Pentamidine nebuliser (Septrin). I wasn’t expecting to have that today, although I was due for it. So the first thing I had to do at the hospital was spend 20 minutes in a room on my own while had used the nebuliser.
I went straight in to see Dr Lee after I came out. I was waiting to find out what the process was going to be. He told me had discussed it with his colleagues in Liverpool and rather than going through the process of putting on the expensive lanalidomide (Revlamid) and have to try and convince those who hold the purse strings that it would be worth it, they would carry on with the Velcade. They agreed though because of the pain I had been suffering because of the Velcade, they would reduce the amount they would give me.
The schedule at the moment is that I will have Velcade every week for four weeks. If I still need to have any more Velcade then I will do another four weeks after a week or two break. Hopefully though I should only need the four weeks as I will be in September then and should be having my SCT although I don’t know yet if it is at the beginning or the end of the September. I will know more on the date (I hope) after my appointment mid August.
Do they give you the Velcade by tummy shot or IV? They are changing over to the tummy shot here because it has been shown to cause less neuropathy. The Velcade is mixed a little differently. It's less diluted in the shot. Some people get a reaction at the site but it's a worthwhile trade-off to lessen PN. Also, there is a list of supplements that protect the nerves that Dana Farber(a cancer hosp. in Boston) rec. when on chemos that cause PN. They're safe for MM'ers and many docs rec. them now. I'm told they help, as does avoiding alcohol, massage, and exercise.
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I am intending that the Velcade helps you to hold your own until the SCT and that the SCT is progressing successfully and sooner, for the highest and best good of all concerned, so be it and so it is....whooooooooo!
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