[JackieO]

Husband just diagnosed with multiple myeloma

by JackieO on Fri May 04, 2018 10:28 pm

Hi all,

My husband, who is 53, was just diagnosed on May 2.

In 2013 his hemoglobin levels began dropping, reported at 137.

It dropped to 113 in 2016, and 107 in 2017, finally resting at 90 in February 2018 before I demanded a new doctor look at the case as his family doctor continued to dismiss it as a side effect of his diabetes after doing some initial low-level testing to rule out colon cancer.

At first the hematologist also was inclined to believe it was his diabetes causing the problem. However, when his protein levels came back in the 70s, he said he was "almost certain" it was bone marrow cancer, and did a bone biopsy that day, a week before his actual diagnosis.

Full body skeletal x-rays, a ton of bloodwork, and the biopsy later we returned to the doctor (a 2.5-hour drive from our rural home town) to find out he was right (I'd held out hope he was just full of himself).

Knowing we had a far drive, he elected that we would begin the CyBorD (cyclophosphamide, Velcade, and dexamethasone) treatment then and there. He advised that at the site of the sample his plasma was at 90%, noting it was "quite high."

My husband swears he likes this doctor because he's by the book and a "check-list" doctor, but God his bedside manner leaves a lot to be desired.

At any rate, he's been ordered to do four cycles of the CyBorD and then we will see how he's progressing with it.

Day 1 of the treatment his sugar levels skyrocketed, as we expected, and ultimately he went to our local hospital to deal with it, as the hematologist did not prescribe any short-acting insulin to combat it.

We now have the short-acting insulin and the Freestyle Libre glucose monitor is on its way to save his poor fingers from all that poking!

I just wish there was clearly laid out paths to follow, do this and this might happen, rather than a hit and miss method, which I know is the way its done, but so hard for control freaks like me.

[Cheryl G]

Re: Husband just diagnosed with multiple myeloma

by Cheryl G on Sat May 05, 2018 4:22 pm

I'm sorry to hear about your husband's diagnosis, Jackie. I'm sure this is all very overwhelming. Just try to pace yourself and realize that, more than likely, you will have lots and lots of time to learn the jargon and educate yourself overall about myeloma.

If you haven't found it already, this is a very helpful post here in the forum with links to lots of discussions related to treatments, side effects, and other issues. (The post is always at the top of the discussions listed in the "Treatments & Side Effects" section of the forum.)

You also can find lots of other forum discussions on topics you want to research by using the forum search box and typing single keywords, rather than phrases, when you're doing a search. You'll have a lot more luck searching for "neuropathy", for example, instead of "treatments for neuropathy".

I think you also may find it helpful to go through some of the other introductions in this section of the forum and see some of the things that were discussed there and the advice people received.

There is a lot of progress being made in the treatment of multiple myeloma, with some exciting new treatments poised to become available in the next 5 years. In the meantime, the treatments that already are available are making it possible for people with the disease to live a very long time. So don't let yourself be discouraged.

Good luck!

[Nancy Shamanna]

Re: Husband just diagnosed with multiple myeloma

by Nancy Shamanna on Sun May 06, 2018 11:29 am

Hello JackieO,

I am sorry to hear that your husband has been diagnosed with myeloma recently. The anemia is one of the symptoms of myeloma actually (CRAB: excess Calcium in the blood; Renal problems; Anemia; Bone disease), and it is good that it was eventually diagnosed properly. The mutant plasma cells in the bone marrow can crowd out the healthy red blood cells, and so less hemoglobin is produced, causing anemia.

I hope that the CyBorD treatments work well to bring down the monoclonal proteins and/or free light chains in the blood. As well as the results from the bone marrow biopsy, your husband probably has been tested for those blood markers, as well as the complete blood count, creatinine levels (kidney function), and excess calcium in the blood, and even a 24 hour urine test.

The whole initial diagnosis can be a lot to take in, and you have been hit with this quite suddenly. Take good care of yourselves and good luck!

[MichelleNZ]

Re: Husband just diagnosed with multiple myeloma

by MichelleNZ on Mon Aug 20, 2018 5:43 am

Hi Jackie,

I hope you husband has responded well to treatment since your post. It's a rough road. My husband was diagnosed on the 21st of January and also had 4 rounds of CyBorD to begin with. Thinking of you. x