[Hoss]

Mother 2 years into plasma cell leukemia

by Hoss on Sat Jan 30, 2016 3:16 pm

Hello,

I have been following this forum for over a year now and find it a very helpful source of information. I have learned A LOT in the last few years about multiple myeloma and I've read everything I can regarding plasma cell leukemia. I have folders full of lab reports and notes going back 2 years outlining this "journey", but I'll try and keep it relatively straightforward, otherwise I'll become lost and overwhelmed about what should be relevant in an introduction.

My mum was a nurse for 30 years, healthy and active when she retired in early 2013, then began complaining of an incredibly sore back as well as feeling weak for a few months prior to diagnosis in February 2014. She became nauseous one evening and very dizzy. I took her to ER, they took blood, her hemoglobin was at 54 (!), as well as a fracture on her vertebrae. They did all necessary tests to come up with plasma cell leukemia as the diagnosis.

She has done 2 rounds of PACE, which made her very ill, then onto 11 months of Velcade / Revlimid / dex (VRD). A stem cell transplant was attempted but didn't work because they couldn't get enough cells to harvest. The VRD kept cancer controlled, though she never reached remission. When her numbers (doctor keeps close watch on her lambda free light chain number) started going up again, she started Pomalyst / Cytoxan / dex and has been on that for 8 months.

In April 2015 she had a golf ball-sized plasma cell neoplasm (plasmacytoma) removed from the top of her head.

Her lambda light chain started going up in October 2015 at 40 mg/L to 640 mg/L as of Jan. 8th 2016. She had blood work done yesterday so we won't know the latest lambda for a few weeks.

Doctors wanted to start her on Kyprolis, but she decided not to. She is tired of traveling the five hours one way to cancer centre, tired of feeling tired.

Throughout the last 2 years, she has maintained a calm, if not stoic approach to this nightmare. She hasn't had any renal issues, just anemic, low WBC, and lytic lesions on ribs. The last few months she had several bad colds and was treated with antibiotics. She has mild nausea and is always tired, although she still knits, still goes for short walks on good days and enjoyed watering the garden last summer. Now that she has decided not to try Kyprolis, doctors have chosen to keep her on the Pomalyst / dex regimen, while discontinuing Cytoxan and adding oral melphalan to the cocktail.

She gets out of breath easily, is tired, but still able to stay awake for the day and eats small meals. I think she has done quite well for having plasma cell leukemia and making it this far without a stem cell transplant. I have some questions but I will post them in the other discussion panels.

Thanks to everyone on this site. It is an amazing resource and also therapeutic in a way. I'm grateful to have found it!

Andrea

[Little Monkey]

Re: Mother 2 years into plasma cell leukemia

by Little Monkey on Sat Jan 30, 2016 6:00 pm

Welcome Andrea, although it is unfortunate that you have to be here.

I noticed you are from Saskatchewan, there are members of this forum from across Canada. Your mom must live in a very rural part of the province if she is five hours away from the nearest cancer centre.

Plasma cell leukemia is not something to be dealt with lightly. Has your mom ever been referred to a multiple myeloma specialist by her haematologist?

I am not sure if there is a myeloma specialist in Saskatchewan, but I do believe neighbouring Alberta has some and there are some in London and Toronto, Ontario.

[Hoss]

Re: Mother 2 years into plasma cell leukemia

by Hoss on Sat Jan 30, 2016 7:07 pm

Hello,

That's something I forgot to mention ... No, there is no multiple myeloma specialist in SK, although the doctors in Saskatoon seem to be familiar with it. We live way down in cattle country, near the Montana border, so it's quite a haul to Saskatoon.

Andrea

[Little Monkey]

Re: Mother 2 years into plasma cell leukemia

by Little Monkey on Sat Jan 30, 2016 9:06 pm

So all treatment is done in Saskatoon, rather than the closer Regina?

I would try to get a referral for your mom to Southern Alberta Cancer Research Institute / Tom Baker; they have a myeloma specialist. I think a member of our forum has attended this treatment centre before.

A haematologist might have some experience in treating myeloma / plasma cell leukemia. However, a myeloma specialist can provide the best care, usually by guiding a local haematologist on providing the best care.

For example, my dad's haematologist deals with a few myeloma cases a week, however she also deals with lymphoma and leukemia. She sent my dad to a myeloma specialist in Toronto just to make sure she was on the right track. It is the local haematologist who treats my dad, with some input from the myeloma specialist.