[Larmo222]

Hello, myeloma newbie here, recently diagnosed

by Larmo222 on Wed Apr 16, 2014 2:14 pm

Hello everyone,

My name is Larry, from the Pittsburgh, Pennsylvania area. I'm 58, and I was diagnosed with multiple myeloma in February 2014.

As I'm sure many of you have been through this, what a shocker. I started to research everything I could find out about multiple myeloma, and quickly realized what a complicated thing it is, and how much there was to learn.

I sought out and found a myeloma specialist locally. I learned that my particular type of multiple myeloma is producing only kappa free light chains, KFLC. While the normal range is 3.3 to 19.4, my KFLC was 9940. Yikes!

I started my first round of chemo therapy of Velcade, Revlimid, and dexamethasone, and had some complications, mostly constipation that I did not prepare for at all. Anyways, this resulted in an incomplete first round.

Despite the incomplete first round, my KFLC results went to 196! I was quite pleased.

Round two was changed to only Revlimid and dexamethasone. I have yet to get the results after round two.

Ultimately the goal of my doctors is a stem cell transplant.

The one thing I struggle with is: after researching the options, I ask myself if I'm being treated by the best doctors, and seeking the best options. I've seen lots of info about places like UAMS in Arkansas, the Mayo Clinic, etc.

I have to question if stem cell transplant is the best way to go, and if there are multiple myeloma patients who choose not to do it, what the ramifications of such a decision would be, etc., etc.

Thanks in advance for any advice.

I am so thankful for the Myeloma Beacon, the IMF, MMRF, and many other resources that I've discovered.

[Multibilly]

Re: Hello, myeloma newbie here, recently diagnosed

by Multibilly on Wed Apr 16, 2014 4:09 pm

Hi Larry,

Welcome to the forum.

Are you sure you are comparing the same units of measure for your Kappa FLC that you are using for your reference range? That is, are all your KFLC lab results expressed in mg/L (which is what the reference range of 3.3 to 19.4 is expressed in)? Depending on the units of measure for each lab result, this can throw off measurements by a factor of 10 or 100.

I always like to point folks to this thread when they are debating whether to have an autologous stem cell transplant (ASCT) or not.

https://myelomabeacon.org/forum/looking-for-feedback-on-recommended-first-round-treatment-t1502.html

[Larmo222]

Re: Hello, myeloma newbie here, recently diagnosed

by Larmo222 on Sun Apr 20, 2014 10:42 am

Hi Multibilly,

Thanks for the welcome, and for the information about SCT. And yes, I have confirmed my KFLC units of measure is MG/L

Regards

[Multibilly]

Re: Hello, myeloma newbie here, recently diagnosed

by Multibilly on Sun Apr 20, 2014 10:46 am

9940 mg/L for kappa FLC? "Yikes" indeed

[Larmo222]

Re: Hello, myeloma newbie here, recently diagnosed

by Larmo222 on Sun Apr 20, 2014 9:16 pm

Multibilly,

I'm glad you had me double check, because:

The 9930 mg/ L was accurate for the initial number, but after round 1, my KFLC went to 196 mg/dl

So that would equate to 1960 mg/L if I'm not mistaken.

Thanks for bringing that to my attention.

[AnnM]

Re: Hello, myeloma newbie here, recently diagnosed

by AnnM on Mon Apr 21, 2014 9:21 am

Larry,

My husband has completed 4 cycles of RVD, 2 weeks on and 1 week off. We had a consultation with the stem cell transplant doctor and my husband has decided not to go through with it, nor to harvest his stem cells.

Quality of life is most important to him and, after researching, he does not want to interrupt his life for a year to go through it and recover. I know that many here recover quickly, but he is 68.

Also RVD has weakened not only his immune system but he has lost 20 pounds, all muscle mass, is fatigued but can't sleep, has short term memory loss, and has heightened fears about many issues. He is willing to take the risk of maintenance with Revlimid and return to the life he had.

This is a very tough decision. Thanks again to Multibilly for the link to the SCT thread. It is thought provoking.

May you make the decision that is right for you.

AnnieB

[Larmo222]

Re: Hello, myeloma newbie here, recently diagnosed

by Larmo222 on Thu May 29, 2014 3:32 pm

Annie,

I certainly wish you all the best. It is indeed a very tough decision.

I suppose we all struggle with these decisions given the ever-changing treatment landscape.

The one piece of advice that many people recommend, is to seek out a major myeloma treatmemnt center. I do have a myeloma specialist here in Pittsburgh, but its not one of the major centers that you seem to see over and over on the beacon and other patiert advocacy sites, such as Mayo clinic, Sloan Kettering, Dana Farber, UAMS, etc. etc.

I can't help but wonder if I would have other treatment options/plans somewhere else, yet traveling for treatment presents a whole other set of issues.

[antelope1225]

Re: Hello, myeloma newbie here, recently diagnosed

by antelope1225 on Thu May 29, 2014 5:21 pm

Hi Larmo222.

I am 57 and I remember how devastating it was to find out I had multiple myeloma with light chain deposition disease and how fearful I was of a bone marrow transplant / stem cell replacement. I felt like every new thing I found out about was worse and I was going downhill.

It was a very hard time - all those drugs made me shake so bad I could hardly write or put on makeup. It was the first time I had seriously thought of death. I am a Christian and have been for 30 years, but it is really hard to let go of life (which is what I felt was my biggest challenge).

I have a good husband, 3 wonderful grown children and 5 grandchildren and I love life. I had to make out a will and make out a living will and come to terms with my mortality I had to "let go" of the new house we had just built and accept that I might not be around to enjoy it or my family - but I have had such a good last year!

The 6 weeks in the hospital and first few months were hard - my body had a reaction to my stem cells and I was in the ICU for about 4 days while in the hospital. Unfortunately, a few months after I got home, I went to visit my mother in the nursing home and got C-Diff - had that 4 times and that was really bad.

But, now I feel as good as I have ever felt. Life is sweeter than ever. I am content with whatever life I have left, but I am glad I had a sCR and I will do it again when I need to.

You don't think you will ever feel good again when you are going downhill, but I do feel good again. I take Revlimid every other day and other meds, but it is OK. It feels normal to me now.

[Blackbird]

Re: Hello, myeloma newbie here, recently diagnosed

by Blackbird on Fri May 30, 2014 2:03 pm

For me the question of whether or not to get a stem cell transplant was never in doubt. I only have one kidney due to donating the other one to my brother back in 1989, and my kidney function was starting to go downhill fast due to the light chain deposition disease. My nephrologist basically said that if I don't get the stem cell transplant I would likely lose my kidney.

Oddly enough, the oncologist at U of M was wary of the fact that I only had one kidney and the effect that the high dose chemo might have on it, which was the opposite opinion of my nephrologist. As a result, I had to go through some extra testing to make sure that my kidney was healthy enough to make it through. Fortunately it was, and I went through the SCT last November.

Was it difficult? In some ways, yes, in some ways no. Fortunately for me, my results were textbook. Everything that I went through happened exactly when it was supposed to, meaning my blood counts went steadily down, my stem cells started grafting, and my blood counts started to rise, all right on schedule. The only thing I needed during the whole process was one platelet transfusion.

The worst thing that I experienced was almost constant nausea from the chemo and hair loss. Compared to the kidney transplant that I went through, this was easy (but that's another story in an earlier chapter of my life), but compared to every day "normal" living, it was tough.

I was released on schedule. When I went out of the house the first few weeks (which wasn't often) I wore a mask to limit the chance of infections which was annoying. But I got through it all, had a complete response to the SCT, and, a little over 6 months later, I'm back to living almost as normal of a life as I had prior to my diagnosis.

Was it worth it? Very much so and I would do it again in a heartbeat. But my reason was born of necessity since my other option was likely to lose my kidney and go on dialysis, and, other than a familial one, getting a donor kidney with my condition was remote at best.

You have other options and if you have a complete or good response to the drug regimen, then maybe a stem cell transplant isn't your best option. The only one who can answer that is you, but my advice is to listen to your doctor and which way he/she is leaning. If he/she believes that your best chance is with one, I would go for it.

[Larmo222]

Re: Hello, myeloma newbie here, recently diagnosed

by Larmo222 on Fri May 30, 2014 9:56 pm

Cathy, Rick, Thanks for the input!,

It's amazing to hear other people's experiences, and how they deal with things on this journey.

You both have been through so much and I am glad to hear where you are now!

Thanks so much, I wish you the best