[fetalsono]

Diagnosed smoldering last year - have started treatment

by fetalsono on Sun Mar 16, 2014 4:14 pm

I am a physician (non-hematologist, etc) who was diagnosed with smoldering myeloma 6 months ago. Normal calcium, normal bones, normal renal function initially and mild anemia.

My physician was following me along with a plan that if my light chains exceeded 1000 mg he would begin to treat. About 2 months ago my light chains began to rise slightly from 400 to 800 and my creatinine (renal function) began to rise. In January my kappa light chains went to 1100 and my creatinine increased to 2.0.

While everything else was normal, he decided to treat me to prevent further renal deterioration. Velcade, Cytoxan and dexamethasone once a week for 4 weeks with a one week break. My creatinine has come down as well as my light chains a bit. The plan is for 2-4 more months of this.

I was initially quite frightened with the diagnosis. He explained to me that, with the new therapies available, this is a manageable disease and that patients can live 10 + years after diagnosis. He wanted to have me think of this as a chronic condition that is not treated like surgery where you have the operation and it is fixed.

I realize that every patient is different in the extent of their disease and how they respond. I am hopeful his comforting words were not sugar coated. I am glad to join the group.

Thanks

[gardengirl]

Re: Diagnosed smoldering last year - have started treatment

by gardengirl on Sat Mar 22, 2014 9:50 am

Hi there! Yes, everyone is different, but we share some similarities. I was diagnosed 4 months ago with smoldering myeloma, but after having 2 more opinions from specialists, they feel I need to start treatment. My kappa light chains have increased over 4 months from 690 to 830 (I'm IgA and have a small plasmacytoma in C7... other than that, no CRAB yet). They want to start me on CyBorD just like you. How are you doing with the treatment?

P.S. I don't think your doctor's words are sugar coated ... I think it's a reality!

[fetalsono]

Re: Diagnosed smoldering last year - have started treatment

by fetalsono on Sat Mar 22, 2014 10:44 am

Thanks for the reply. My therapy has really been fine. The whole process takes about 2-3 hours (hydration for an hour, Cytoxan for an hour with a shot of Velcade in between). They give me Kytril (anti-nausea) to begin and my dexamethasone pills before I start.

The only side effects I have is that, when I get home (my treatment is from 2-5 PM), I eat everything in the pantry. Also, it does interfere with my sleep and I take a sleeping pill. Some people like treatment in the morning so it interferes less with their sleep.

Couple of things your doctor may forget to mention. There are two "things" that interfere with the effectiveness of the Velcade 1) foods and supplements high in polyphenols such as tea, oranges, blueberries, broccoli, most nuts and dark chocolate. Also, vitamin C supplements also. - What I do is stop them the day before, the day of, and the day after treatment.

One side effect of the Velcade is neuropathy - pain, coldness or burning in your feet or hands., Not all people get this, and those that have a neuropathy prior to treatment are a little more likely to get it.

I take a supplement called R-alpha lipoic acid 200 mg three times a day and also take a supplement called N-acetyl cysteine 500 mg once a day. The alpha lipoic acid has been found to be helpful in some diabetic patients with neuropathy and it works for me.

However, there are a couple of reports that both of these interfere with Velcade - so I do the same as I do with the polyphenols. None the day before, day of, and day after.

Good luck

[Multibilly]

Re: Diagnosed smoldering last year - have started treatment

by Multibilly on Sat Mar 22, 2014 10:58 am

Hey Fetalsono,

Glad to hear things are working out for you on this. So, you are a doc, right? It sounds like you believe it is sufficient to simply halt any compromising supplement or food the day before you get your multiple myeloma drugs.

Do you believe that the vast majority of these supplements or chemicals in your foods are pretty well out of your system in 24 hours? I've always wondered about just how long before taking a given drug that one should consider eliminating a potentially conflicting drug/food/supplement.

I remember when I've had surgery in the past, that they asked me to stop taking aspirin a full week before my surgery. Maybe that drug in particular has longer lasting effects or the hospital was just being overly cautious?

[fetalsono]

Re: Diagnosed smoldering last year - have started treatment

by fetalsono on Sat Mar 22, 2014 12:29 pm

I don't have any hard data on supplement or food disappearance from the body after taking them. My doctor told me that the subcutaneous Velcade would be mostly gone by 3 days. I contacted the group of doctors in Los Angeles who wrote a study saying that R-alpha lipoic acid might interfere with Velcade. They told me that they tell their patients not to take it only on the day of treatment. I added an extra day on either side, to play it safe.

[Multibilly]

Re: Diagnosed smoldering last year - have started treatment

by Multibilly on Sat Mar 22, 2014 1:08 pm

thanks...