[Dideoh]

Additional drugs on top of CyBorD

by Dideoh on Sat Mar 26, 2016 7:10 pm

I have been reading about the various treatments for myeloma. My husband John has been receiving cylophosphamide, Velcade and dexamethasone (CyBorD) since July 2015. The dex has been randomly changed. Started with 2 doses a day apart of 40 mg when he had suspected kidney disease. After a lot of trials, he now has 8 mg dex on the day of chemo. This seems to be manageable for him. There seems to be a lot of variability to this drug. We found that it can cause a noticeable rise in blood sugar.

John was initially started on Bactrim, valacyclovir, and an anti-gout drug as well as Nexium (esomeprazole) and Pramin (metoclopramide) for nausea. He was allergic to Bactrim after a while - rash - so it was stopped. Recently he ended up with pneumonia - (?PCP) and a stint in hospital with lots of antibiotics. Eventually he left hospital and was on 2 other antibiotics. Now he is back to Bactrim twice a week and watching to see if any rash appears.

The valacyclovir seems to be OK. Have started giving it at night as John seemed to think it caused him some mental confusion.

Stopped the anti-gout medicine after a few months.

Nexium is only on chemo day .

Now we have added Zometa infusions monthly after a C2 lesion was found (radiation given) and Caltrate daily.

I give John an Aranesp injection every 10 days at present to help with the anemia.

John is still tired tho and just not well in general. His creatinine levels have improved and seem fairly stable at present. Kidney failure was his initial presenting symptom.

I have been reading the pros and cons of stem cell transplant. We had hoped to be engaging in that procedure until the bout of pneumonia stepped in, which was probably a good thing as then all the testing revealed the lesion.

I can't help wondering, though. Stem cell transplant may offer a better quality of life for at least a period of time. At present, all the drugs may be increasing John's life span, but the quality of life is not fantastic. Our haematologist tentatively offered a initial prognosis of 3-5 years, last July. The days and months are ticking by.

It is really hard trying to plan a life as each day is different. Some days John feels well enough to stay up and do a few things, other days he sleeps and sits around with not much mental clarity or energy. Will he ever feel "better"?.

Now that he has had this one bone lesion, is that the start of fractures despite the Zometa and Caltrate? I have already expounded the difficulty I have keeping him moving and getting a bit of sunlight (mild sunlight only) onto his skin.

Having anemia and all the other myeloma issues is one thing, but living a life with spontaneous fractures and a general bone weakness is pretty scary to me.

[Nancy Shamanna]

Re: Additional drugs on top of CyBorD

by Nancy Shamanna on Sat Mar 26, 2016 9:13 pm

Hi Dianne,

I am sorry to hear about your husband's health problems, and that he has developed a lesion too. I don't think that the presence of a lesion would be a reason not to have a stem cell transplant though, for many people with lots of lesions do have those.

From what I understand, it is best to be near a good or very good remission before have the transplant, for best results. How are the treatments going, in terms of getting the myeloma under control?

I hope that helps, and good luck with the ongoing treatments.

[wwoofa]

Re: Additional drugs on top of CyBorD

by wwoofa on Sun Mar 27, 2016 6:35 pm

Hi Dianne,

When I was first diagnosed with multiple myeloma in 2009, I felt very unwell and doctors didn't really know why. It turned out that I had depression. I really couldn't understand how your mind could make you so sick, but once I started the right therapy and drugs, a lot of the issues went away.

I'm not saying that this is your husband's problem, but I just thought you might like to consider it.

I hope he feels much better soon and starts to enjoy life again.

Best Regards,
Paul

[Dideoh]

Re: Additional drugs on top of CyBorD

by Dideoh on Sun Mar 27, 2016 9:24 pm

Thanks for the replies.

So far John seems to be responding reasonably well to treatment, though it was slow to start with. He had to wait until creatinine levels dropped from over 300 to 150 before the stem cell transplant was considered. He has managed to achieve that, so hopefully he stays stabilized and the stem cell topic can be revisited in a few months. (We were about to start the stem cell process when he developed pneumonia.)

John has never been a depressed person, but definitely the impact of the disease and drugs has caused depression - another reason why I have been trying to keep him moving. He has always been a very intelligent man, capable of doing a wide variety of things, always ready to help some­one. The chemo brain effect has been distressing for him, let alone anemia.

Our lives have changed so suddenly and dramatically. we are grateful for all the support, treatments, facilities, expertise that we have at our fingertips. It has been amazing in so many ways. We continue to focus on what we have, to live each day as it comes.