[Lauren0307]

Dad, 65, offically diagnosed this past Monday

by Lauren0307 on Tue Aug 14, 2018 11:30 pm

I gave a detailed description of my dad's myeloma-related history up to last month in an earlier post. The shorter version is that he was diagnosed with a solitary plasmacytoma at 64 last June. He completed radiation treatment in September and his oncologist, ear / nose / throat specialist (ENT) and radiologist were satisfied that the tumor had been eradicated.

In December, however, my dad started to complain of discomfort in his jaw. Two of his molars were loose and the dentist was perplexed. He was referred to endodontist. The endodontist tried to figure out what was going on for months and finally referred my dad to an oral surgeon a few weeks ago. My dad also completed a PET scan / CT scan at this time, which showed two hyper­metabolic focus areas in the sternum with SUV uptakes of 3.7 and 4.4.

My dad also had a CT scan of his head / sinuses in May. CT scan showed lytic lesions in the mandible. My dad did get a referral to the oral surgeon in June to biopsy the area. My dad's oncologist called and told him that his kappa-lambda ratio is raised back to around the levels they were when he had the plasmacytoma last summer. The oncologist says my dad should complete another bone marrow biopsy given the raised levels.

The biopsy results came from the oral surgeon about 2 weeks ago and confirmed it to be a plasmacytoma. We went to the oncologist right after for the scheduled bone marrow biopsy. Given a recurrence of a plasmacytoma, he said we should treat this as a systemic disease even though he does not believe it to be multiple myeloma at this point.

We got a second opinion yesterday with a myeloma specialist. She diagnosed my father with multiple myeloma. My parents were so shocked. I think their shock and disbelief was the hardest part of the day for me.

I don’t have a copy of all his blood work yet, but apparently he has IgA kappa. I did ask about the beta-2 microglobulin and it was 2.39. LDH and albumin were good. No evidence of kidney issues. Nothing in the bone marrow biopsy. They will FISH test the plasmacytoma sample they have from the jaw. This will apparently tell us a lot more about the aggressiveness. I am anxiously awaiting these results.

This doctor's treatment plan will be 4 cycles of Kyprolis, Revlimid, and dexamethasone, followed by an autologous stem cell transplant. I was a little taken aback by the stem cell transplant. I had figured some kind of drug treatment, but thought they would see if that put him in remission for awhile. The doctor seems to think this approach poses the best chance at a long(er) remission period. (She kept reiterating he is young at 65 and should go forth with the transplant.)

My father is hoping to continue working during the drug treatment prior to transplant. I am hoping he won’t feel too sick and can. And then will go on disability for the transplant. We need to see what of any of this insurance covers as well. He is worried about keeping his job at the end of this.

I am 33 and unmarried with no kids. I am currently living in a city about 45 minutes to an hour (depending on traffic) from my parents. My lease is month-to-month, luckily enough. My plan is to move back in with them for a bit (I am thinking through spring) to help out and provide any support I can. I will look for an apartment in a different smaller city (ok, more like a larger suburb) about 30 minutes from them (and friends) for the spring. Obviously my dating profile is going to take a hit but oh well (kidding! mostly :-p) My sister lives in the Netherlands, so I am not sure when she plans on coming here next. She is thinking November and then whenever the stem cell transplant is (if he goes that route).

My dad has an appointment with a second specialist Monday. Then he will decide who to move forward with.

[Mark Pouley]

Re: Dad, 65, offically diagnosed this past Monday

by Mark Pouley on Tue Aug 21, 2018 6:43 pm

Thank you for the information, Lauren. It sounds like your dad has a strong advocate on his side.

I don't have a lot to share, but I think you will find encouragement from a lot of patients in your dad's shoes that were able to work during and after treatments. I'm younger and didn't have as much bone involvement, but I tolerated all of the treatments well and I'm back at work 2 years post-transplant now. It's great that he is seeing a specialist and it looks like he is getting treated with some of the most current medications.

Good luck to you and the family.