If you’ve been following this blog on a regular basis, you’ll be aware that I’ve recently had some “Grrrr!” moments of not hearing back from my consultants in response to an email I sent on 17 June. While I was on the stem cell collection machine on Tuesday 28 June, I asked Sarah, the specialist nurse, if there was any chance of seeing one of the consultants…
Just after the nurse had finished unhooking me from the machine, Sarah returned with Dr Cathy Williams and we trooped off to a small consulting room for a chat.
Firstly, Cathy apologised for not getting back to me. Somewhere along the line, the message had been miscommunicated and she had understood that I no longer needed to speak to her. She told me that they had not been able to watch the video clip (an interview with an American myeloma doctor), so I told her roughly what it entailed (see previous post for more details).
We talked about transplants and I told her I had already made my decision to go ahead with it. She confirmed what Jenny, the specialist nurse had told me, that stem cell transplantation is considered the gold standard of treatment currently in the UK and is most likely to give a longer remission period than without. She assured me that I could change my mind at any time, but there would be no further treatment, only watching and waiting to see what happens.
A very rare number of people have what is called ‘molecular remission’, which means that there is absolutely no disease visible in any cells on a molecular level. This test is not carried out on a regular basis and clinical trials have yet to take place to find out how frequently this occurs. For the rest, myeloma will always be present, but while in remission, patients are for the most part quite healthy and do not need treatment.
We talked about taking calcium supplements and she advised against it for now, particularly as I had had to be treated for hypercalcaemia (too much calcium in my blood) in February prior to the myeloma diagnosis. But we both agreed that a healthy diet, including sufficient calcium was essential. My calcium levels will be checked regularly during and following treatment anyway, so I am not especially concerned.
We also discussed the use of Zometa (zoledronic acid), which is a bisphosphonate – a drug that is used to slow down or prevent bone pain, deterioration and fractures. Apparently, Zometa is also given to people with osteoporosis to improve bone mineral density. Cathy confirmed that my kidney function is now sufficiently improved for me to be able to take Zometa, so I will have the first infusion (via my Hickman line) this coming Thursday.
All being well, I will continue having Zometa on a 4-6 weekly basis for the next two years. After that time, the risk of osteonecrosis of the jaw (damage to or death of the jaw bone, which can cause pain and all sorts of dental problems) increases.
Finally and very happily, Sarah confirmed the date for the high dose chemotherapy and subsequent stem cell transplant… I thought it would be around 11 July, meaning I would be leaving hospital a couple of days before my birthday and therefore feeling really rough, weak and tired on the day – certainly not in the mood to party!
But, while sitting next to Lynne, the transplant co-ordinator, Sarah had overheard her booking me in for 26 July and knowing my birthday is on 28 July, asked for it to be pushed forward one week to 2 August. Hurray! I bloody love that woman! And I gave her a kiss to say so. Now I can celebrate my birthday in good health and with plenty of energy. Problem now is what to do… a party, quiet dinner for two, camping out, a holiday abroad… Oooh so many choices! 😀