[Cedric]

Wife recently diagnosed

by Cedric on Fri Jul 24, 2015 3:17 am

Hi everyone,

I've been digesting a tremendous amount of information on the Internet these days. My wife and I recently got the news, following a bone marrow aspiration, that she has been diagnosed with multiple myeloma, and we are in the early stages of determining the finer details.

It's a frustrating and confusing situation to contend with, especially considering we don't yet know what we can expect in the near future (let alone distant future ...). However, I would like to say that forums like these help. Reading encouraging anecdotes and seeing that there is a community of support out there is helping us cope with the new challenge. My name is Cedric, only 30 years old, and my wife Sabrina is 25. From what I can gather so far, she seems considerably outside the mean demographic of myeloma patients.

Just wanted to introduce ourselves and thank those here contributing to the forum. We look for­ward to reading on, and to sharing our experiences with you too.

Cheers,
Cedric & Sabrina
BC, Canada
(Currently in HK)

[Little Monkey]

Re: Wife recently diagnosed

by Little Monkey on Fri Jul 24, 2015 7:33 am

Wow, 25 years old? Sorry to hear.

The spot where they did the bone marrow aspiration, is it a location where they found a specific lesion?

[NStewart]

Re: Wife recently diagnosed

by NStewart on Sat Jul 25, 2015 12:01 am

Unfortunate that your wife is being diagnosed with myeloma at such an early age, but fortunate for her that there are a number of young people on this forum who are also young, 20's and 30's. She is in a rare group with many different concerns than those of us who were diagnosed at a more advanced age. But, of course, the main concern is how to treat your wife's particular myeloma so that she can live a good long life with you.

All the best to you both. There are many Canadians on the forum who can help you in navigating the differing ways of working with National Health in the different provinces.

Nancy in Phila

[Jonah]

Re: Wife recently diagnosed

by Jonah on Sat Jul 25, 2015 12:51 am

Hello, Cedric, and welcome to the forum. I echo your sentiments ... I'm sorry you've had to post here, but I'm glad you've shared you and your wife's story, and you've come to a useful place for help and support.

As you learn more about your wife's situation and need help understanding lab results she gets, or understanding different options she's been presented, just let us know what questions you may have.

One thing that it is important to clarify right now is whether your wife has multiple myeloma that will require immediate treatment -- or treatment very soon -- or whether she has what is generally called "smoldering" multiple myeloma, which typically is not treated.

Given your wife's age, I wonder if perhaps her diagnosis might be smoldering multiple myeloma, which would have very different implications for next steps compared to a diagnosis of multiple myeloma, or what sometimes is called "symptomatic multiple myeloma" to differentiate it from "smoldering multiple myeloma."

In either case, I wish you and your wife all the best.

[deb b]

Re: Wife recently diagnosed

by deb b on Fri Jul 31, 2015 5:20 am

I am sorry to hear of your wife's diagnosis. As she finds out more about her treatment options you will feel more confident. For me,I felt better after starting my chemo regimen, than I did for the previous 2 years even with the side effects. It may be a bit early but do make sure to visit the site clinical trials.com . Check to see if there is anything available in your area. Familiarize yourself with the term phasing , ie) phase 3 usually means that whatever therapy they are using, they are comparing it to an already existing therapy, meaning you will have had to have failed at least one therapy. This at first sounds callus, but when you realize that they ethically have to ensure you have been provided proven therapies first, it makes perfect sense. Stay brave,

[mikeb]

Re: Wife recently diagnosed

by mikeb on Fri Jul 31, 2015 3:22 pm

Hi Cedric,
Welcome to the Forum, though I'm sorry to hear about your wife's condition.

You've gotten good advice from the other folks on this thread. I'd just like to second something deb b said. I had MGUS and then smoldering myeloma before it progressed to symptomatic multiple myeloma and needed treatment. I never expected to feel this way, but I actually have felt better mentally during the symptomatic phase (2 1/2 years now) than during the smoldering phase. There's something about actually beginning treatment and actively working against the myeloma that seems a lot better to me than just waiting and waiting.

Also, deb b gave you some good advice about clinical trials. They are well worth looking into, even at the beginning of your wife's treatment. Some Phase 3 trials are testing treatments among new patients; they are not all exclusively for patients who have relapsed or who are refractory.

Best wishes to you and Sabrina. As you learn more, please keep us posted about Sabrina's condition and treatment, if it turns out that she needs treatment now.

Mike