Hello everyone
I’m looking for any feedback or guidance that you might be kind enough to share on a couple of topics.
First, some background. My wife, Hilary, was diagnosed with stage three myeloma last July although we now believe she had it for some considerable time prior to her diagnosis. She is now on her second chemotherapy regimen (lenalidomide, ixazomib and dexamethasone) and is responding well; zero serum paraproteins, kappa free light chains just within range and an improving bone profile. We are both active people in our late sixties and Hilary was working full time as a domiciliary chiropodist prior to hospital admission for a variety of fractures and osteoporosis starting in November 2017. That was the start of a dark period for her but now she is outwardly much like her old self, save for needing a walking stick for support. Obviously, there are side effects of chemotherapy and other effects of her cancer but she copes admirably. We are going to see a consultant at King’s College Hospital in a week’s time to discuss stem cell therapy.
The first question relates to bone strengthening treatments. Hilary has had some mouth problems (swollen sub-mandibular gland, pyogenic granuloma) and is very concerned about possible osteonecrosis of the jaw and other side effects. Our research suggests that an orally administered bisphosphonate, such as Clodronate, would be less likely to affect her jaw and her kidneys. She was AKI Stage 1 when first admitted to hospital. Does anyone have any experience or knowledge of Clodronate that they could share?
On another note, I have seen information regarding a clinic (Care Oncology Clinic of Harley Street) that offers treatment for various cancers including myeloma. The treatment utilises existing drugs that have been licensed for other purposes (a statin, metformin, doxycycline and mebendazole). I don’t believe they’re suggesting that this will cure anything but may help, as an ancillary treatment, to improve the effect of chemotherapy and to prolong periods of remission.
Again, if you have any experience or knowledge of this treatment and the organisation offering it, we’d be pleased if you would share it.
This is my first post on this forum but I can see that it is a source of great comfort and support for many people. Inevitably, you will all be going through or have gone through the same trials as my dear wife. I wish you well as you proceed on your myeloma journey and thank you for any help you might give us.
