[wwieland]

Wes, diagnosed with multiple myeloma four years ago

by wwieland on Sat Feb 04, 2017 6:32 pm

My name is Wes. I was diagnosed with multiple myeloma in early 2013. Having been a healthy, physically active, six foot (1.83 m) tall, 172 pound individual my entire adult life has made this new existence of mine a bit of an adjustment. I am now a 134 pound, five foot four inch (1.63 m) hunchback. Not that I am complaining mind you. It is a miracle that I am alive at all and am grateful for it.

The adjustment is rather challenging however. Mostly, I see how it impacts those I care about most. The ones who care about me. I think this is harder on them than me in some ways. That said, they allow me to deal with this situation in my own way, which is to stay as independent as possible. With my spine in the shape that it is in, work is out of the question for me. I do what I can, but it is limited. I still get out and do some field work on a tractor now and again on the family farm, but that is only on a good day, and only for an hour or two. Still, it is outdoors and good for me.

My diagnosis came late, a lot of damage had already been done. Had this been another form of cancer, the diagnosis would have been considered late stage 3 or early stage 4. I had been work­ing a lot of hours at the time and did not get to a doctor when I should have.

When I did get to them, they did a fantastic job. The fact that I am alive is due to the support of my family first, and then to the medical professionals who have worked diligently to monitor and treat me. I have learned so much along the way.

It is really a very interesting disease. When one gets into the science of it, it makes it easier to sort of dissociate a bit and just deal with the cancer as a puzzle of sorts. It also makes it easier to compartmentalize it in such a way that one is not constantly thinking about it. I have other things to do than just sit around and think / worry about this stuff. It may not be very important or pro­ductive stuff, but it is the stuff of living.

The basic trajectory has been:

Diagnosis in early 2013.
Followed by radiation and Revlimid.
Leading to an autologous bone marrow transplant in March of 2014.
Subsequently, Revlimid / dex until it stopped working in October of 2016.
Started Velcade / dex which was supplemented with Darzalex. Velcade was stopped due to severe distal neuropathy in February 2017. My current treatment is Darzalex / dex.

Will see how long that lasts ...

That is my story, and I am sticking with it ....

[Cheryl G]

Re: Wes, diagnosed with multiple myeloma four years ago

by Cheryl G on Mon Feb 06, 2017 12:04 pm

Welcome to the forum, Wes.

I was sorry to read about the effect that multiple myeloma has had on your body and your overall quality of life. Do you feel that things are getting better now?

I hope that you continue to respond to the Darzalex regimen, and that the neuropathy you got from Velcade is getting better.

[wwieland]

Re: Wes, diagnosed with multiple myeloma four years ago

by wwieland on Sun Feb 12, 2017 4:58 pm

Thanks, Cheryl G. The impact has been substantial. That said, I still enjoy myself, so there is plenty to be grateful for.

As far as whether things are better now: Things were good when Revlimid was working. No side effects at all at that time, and I was able to function quite well. When the Revlimid stopped work­ing and my kappa count went from 3.6 to 61 in a month, forcing the change to Velcade, things started going down hill. At first the neuropathy was minor, affecting only the immediate area around the subcutaneous injection site. However, by the time the 2nd month of weekly injections rolled around, the neuropathy had spread to my feet and lower legs.

The Darzalex treatment had begun almost immediately after the Velcade treatments, so I was unsure of which symptom was from which drug. The Darzalex documentation did not indicate such side effects, while the side effects are clearly documented in about 36% of Velcade users. That said, Darzalex was fast tracked through the FDA and is very new, so I conclude that side effects are not yet well documented.

As time went on, the neuropathy intensified in my abdominal area where the shots were given as well as in my feet and lower legs. A substantial loss of strength in my legs and hips took place as well. It became clear to me and my oncologists that the Velcade was the culprit.

To be fair, the combination of Velcade, Darzalex, and dexamethasone took my kappa count from 61 to 0.70 in a month! So that is really good efficacy.

I have been free of Velcade injections for six weeks now. I think that the tingling / spiders-under-the-skin feeling has reduced by about 10% at this point. The weakness has not changed yet. I read somewhere that some recover after about three months of stopping the Velcade treatments. Time will tell I guess.

And now will be the real test of the Darzalex. I will be getting it once a month for as long as it works. Again, time will tell.

Thanks for your concern and kind response!

[noway]

Re: Wes, diagnosed with multiple myeloma four years ago

by noway on Wed May 31, 2017 4:02 pm

Wes,

I wish I did not have to welcome you to this forum. My husband has been diagnosed at the same time as you. In fact, I diagnosed him myself, and he received his doctors' diagnosis 3 months later, when he already experienced kidney failure. I do sometimes think what would have happened if he was treated on time.

Being a caregiver is a hell of a job, and having two small children makes the whole situation even more challenging, but I am certain your family, as much as ours, could not do without a husband, a dad, a friend, a brother, an uncle, a warrior. Since you are. There is no way to experience what you are going through for someone who cares for you and is looking after. It is unbearably difficult to look at a person who has changed so fast and so much. But despite the change, the moments we still have together as a family are the ones I am grateful for everyday. So you keep fighting, since those who care for you will not give you up so easily. My husband is also on dex and Darzalex at this point in his journey. Take care!

[wwieland]

Re: Wes, diagnosed with multiple myeloma four years ago

by wwieland on Wed Jun 14, 2017 1:45 pm

noway,

Sometimes I wish I had no reason to come to a forum like this. On the other hand, there is sort of a bright side to this in my case. I know very well that I would have, like my father, worked until I could not work anymore, and then waited around to die. Multiple myeloma darn near killed me back in 2013, and that gave me a whole new perspective. I was forced to quit working, though I tried to keep at it by doing some contract work. I found that I could not concentrate. There is a certain amount of constant discomfort due to my spine collapsing, and it just was not fair to myself or my co-workers to under-perform.

So, my wife just told me to quit. And I did. As a result, I spend my time helping out around the house where I can, spending time with my grandsons, managing the family farm, and generally staying out of the way.

Bottom line is, I never would have taken the time to really enjoy looking around and seeing things for what they are. I was always too busy. Now however, I take the time to simply sit down in the pasture and look at the beauty of the land. I appreciate things now. So this disease, while unfortunate, can have some positives come out.

I am sorry for your husband. Sounds like his path is similar to mine. I wish you did not have to deal with this as a caregiver, or at all for that matter. I know it is difficult, but we are fortunate that there are the treatments we have these days. They give us time to reflect and enjoy what really matters.

All the best to your and yours