[BlueSunshine]

Guidance on grandmother's diagnosis

by BlueSunshine on Fri Oct 17, 2014 1:39 am

Hello everyone.

This is my first post and am hoping to get some guidance and support from those who understand.

My grandmother was diagnosed with stage 3 multiple myeloma this past summer at age 69. The oncologists have mentioned that her myeloma is the aggressive type and there has already been gene deletion. Her bone marrow biopsy indicated that the myeloma is at 45%. Additionally, she is also not a candidate for a transplant and at this point that won't be an option. She is currently on Velcade, Revlimid, and Decadron (dexamethasone), in addition to Zometa.

I know that prognosis is different for everyone but realistically, can anyone provide an estimate or range?

Also, as someone whose grandmother was just diagnosed, is there any advice you can provide?

I am now her full time caregiver and in addition to caring for her, I also handle all her doctor appointments, treatments, and so forth.

Thank you so much in advance for any assistance you can give me. I truly appreciate it.

[Multibilly]

Re: Guidance on grandmother's diagnosis

by Multibilly on Fri Oct 17, 2014 8:02 am

Sunny,

Welcome to the forum. It's a big burden being a full time caregiver and many on this forum can relate to your situation.

Really, there is no way to predict how your Grandmother might respond to treatment and how long she will live. She may well indeed respond well to the treatment (or different treatments over time) and be around for quite a number of years ... with a good quality of life as a result of her treatment over time. As I like to say, every multiple myeloma patient is a "snowflake" – no two are alike.

The most important thing is that she be under the care of an oncologist that specializes in multiple myeloma and understands the best treatments to deal with her particular flavor of her "aggressive disease", as well how to deal with dosing over time, etc.

Perhaps you are already working with a multiple myeloma specialist? If not, if you let us know where you live, we might be able to give you some recommendations on specific institutions or doctors to seek out.

Also, when you say "gene deletion", do you know which specific kind of deletion(s) she has?

Again, welcome to the forum.

[mikeb]

Re: Guidance on grandmother's diagnosis

by mikeb on Fri Oct 17, 2014 11:22 am

Hello BlueSunshine,

Multibilly has given you some really good advice. (I don't think he ever sleeps - he always beats me in replying to posts like yours. )

I second what he said, especially about the importance of having your grandmother treated by a myeloma specialist. The world of myeloma treatment options and diagnostic tests is changing rapidly, and myeloma is a very complex disease. So it's important to have someone who lives and breathes this stuff daily and who has experience with lots of myeloma patients overseeing your grandmother's treatment.

And one other point from my own perspective. I've been treated with the three agents your grandmother is being treated with. They all have side effects to be alert for. You may have already run into some of these. In particular, question your grandmother about tingling or numbness in her fingers or toes, which could be early signs of peripheral neuropathy caused by Velcade. Report any of those signs to your grandmother's oncologist.

And you may have seen sleep disturbances and perhaps mood swings caused by the dex.

As for Revlimid, common side effects include fatigue and lowered blood counts. Less common, but serious, is blood clots. So it is probably good to check your grandmother's legs regularly for signs of unexpected swelling. Again, share any of these indicators with your grandmother's oncologist, and he/she can help you and your grandmother deal with them.

This pamphlet is a good source of information about what to expect from multiple myeloma (http://myeloma.org/pdfs/Patient_Handbook_2013.pdf).

You have a lot on your shoulders. The Myeloma Beacon is a good place to share what is happening with your grandmother and to learn from other folks' experience. And to discover that you're not alone.

Best of luck to you and your grandmother.