[Little Monkey]

Re: Husband may have multiple myeloma

by Little Monkey on Mon Aug 24, 2015 5:39 pm

Kate wrote:

... about 6 or 7 months prior to the shoulder pains, I had tingling in one of my legs and some rib pain occasionally, es­pe­cially at night in bed.. These pains subsided.

This is something I find interesting (in an investigative way) about plasmacytoma, the fact that it is worse at night.

[KimK]

Re: Husband may have multiple myeloma

by KimK on Mon Sep 21, 2015 8:03 pm

Good evening all!!

Thank you very much for all the comments and replies. I have stopped in to give an update.

Hubby has finally been booked in with a hematologist/oncologist at the big cancer center here in Southern Ontario. I have reviewed the credentials and postings on this doctor.....he is rated pretty high, so going in with high hopes for a diagnosis. We go the end of this month.

Much has not moved forward in testing since then. Family GP does not want to do FLC ratio, as it is not covered by insurance and he feels that the hematologist will do it, if needed for diagnosis (covered if done in hospital). But, based on data and results he has sent him, figures next step is bone marrow aspirate anyways.

We have been chasing the one hospital for the CT results from when hubby was hospitalized, as I did not receive a copy from the radiologist when I requested it, and GP was not on list of hospital doctors, so did not get results automatically sent to him. I remembered that there was lytic lesions on the spine mentioned. Radiologist did not consider the Schmorl's nodes significant, but, the family GP states that they are a significant finding with multiple myeloma. So has proceeded to order full skeletal scan (xrays), and requested hospital nuclear medicine also do a skeletal scan??

Doctor wants to have as much data to send to hematologist, so no delay due to need of testing.

So, to me, we are moving in a slow, but, positive direction.

One question. Hubby is on NO medications, other than an anti-inflammatory for the shoulder bone pain and vitamins (including vit D & calcium). He is suffering quite the bit of fluid retention in the lower legs, ankles and feet. His albumin and protein have come back into normal levels. Cardiac ultrasound shows no problems. Kidney function normal (creatinine low, but, this is due to malabsorption??). Anyone else suffer this issue with multiple myeloma?

Thanks all!

Positive thoughts and vibes to all.
Kim

[Little Monkey]

Re: Husband may have multiple myeloma

by Little Monkey on Tue Sep 22, 2015 8:22 am

Hi Kim,

Both London Health Sciences Centre and Princess Margaret in Toronto have specialized myeloma clinics; eventually, your husband should get a referral to see one of myeloma specialists there, even if it's just to give your husband's hematologist direction on how to proceed.

[Nancy Shamanna]

Re: Husband may have multiple myeloma

by Nancy Shamanna on Tue Sep 22, 2015 9:40 am

Hi Kim,

Would you be able to put your family doctor on a list of doctors to send lab results out to?

I have my GP on that list, and she gets copies of my lab results, as does my oncologist, of course. So when I get tests done at the cancer center, she get the results also. We discuss those results sometimes at appointments. I live in Calgary so I think that probably your system and ours would be similar.

The fluid retention sounds worrisome, can you discuss that with your GP too?

Good luck with the upcoming myeloma treatments.

[KimK]

Re: Husband may have multiple myeloma

by KimK on Tue Sep 22, 2015 1:31 pm

Thanks, Little Monkey. That is good to know. London is just a bit further, but opposite direction from Juravinski.

[KimK]

Re: Husband may have multiple myeloma

by KimK on Tue Sep 22, 2015 1:33 pm

That is the plan, Nancy. Our GP was just new to the Province, so was not on the hospital list. But, since he is the referral doctor, he will get results and reports from the Juravinski clinic.

[Little Monkey]

Re: Husband may have multiple myeloma

by Little Monkey on Tue Sep 22, 2015 9:15 pm

I think you live within a 30 minute drive of me.

[KimK]

Re: Husband may have multiple myeloma

by KimK on Thu Sep 24, 2015 1:07 pm

I am in the Brantford area, Little Monkey....

[Sister In Law]

Re: Husband may have multiple myeloma

by Sister In Law on Fri Sep 25, 2015 6:08 pm

Hi Kim,

I am so sorry for your hubby's issues. I am in the same boat. All we know is that he has only lambda light chains in his urine. Sees a cancer specialist next Friday. He's been sick and fatigued for four months. We have been to endless doctors and finally someone did the electrophoresis test on his urine. And there was a monoclonal protein band.

Made me sick to my stomach. His sister passed away in December from lambda myeloma and amyloidosis. Her's was caught very late because she ignored a lot of issues for a year.

One thing I must say is that you should be very careful of the anti-inflammatories because I believe that is what pushed her into renal failure (which caused them to diagnose her diseases in the first place). Those things are hard on the kidneys anyway and they do cause fluid retention. Do Tylenol or try to get someone to prescribe a narcotic (good luck with that). It's so insane how they handle people in pain these days.

Anyway, we know very little about my husband's disease yet and I am feeling so distraught. Their father had myeloma, too. His was the kappa type. The old guy was so ornery that he has survived 20 years and it is still in total remission!! He's 86. Most of the doctors we tell do not believe it and try to tell us that it could not have been myeloma. Well, he still has an M spike, so it is and was myeloma. His oncologist has the papers to prove it.

So we are all in a waiting game and trying to not go nuts. Hoping you get good answers and it is at a good and early stage. I wish the same for us. Hoping for MGUS.

My husband also has some pain in his ankle and his shoulder which concerns me. But all his CT scans of his head, neck and abdomen are fine.

Glad that you wrote in. We all need to feel like we are not alone.

[Little Monkey]

Re: Husband may have multiple myeloma

by Little Monkey on Fri Sep 25, 2015 6:12 pm

KimK wrote:

I am in the Brantford area, Little Monkey ....

Yup ... 30 min drive it is.