Saturday, March 16, 2019

A Change in Direction

Big news. They have decided to change my treatment plan.

For the last (nearly) four years, I have been on a regimen of Revlimid, Velcade and Dexamethason  (RVD) plus an experimental drug called Panobinostat - (RVD + Pano). This was great until I had the stroke. The hematologist told me that since I had started taking blood thinners, they should could prescribe chemo for me as if I had not had the stroke. But the oncologist was still uncomfortable with possibility that the Revlimid had caused the stroke and could cause another. He dropped the Revlimid, hoping that the regimen would still work. Guess what? It didn't.

I wanted to go back to RVD plus Pano, but he strongly recommended against this. He said there were too may other things to try - including a clinical trial of something called Melflufen - which he just happens to be conducting. The advantage of this new one is that after weekly doses for the first month, I will only have to visit Dana Farber once every 28 days. That is a big improvement of having to visit about 3 times per month as I do now.

That sure sounded good to me. Until we read the disclosure form. I have the following concerns:
  • It might not work. RVD plus Pano was at least working.
  • There is no telling how long it will work. My oncologist is hoping for a couple of years. A few months is more typical. I was an outlier on RVD + Pano and he is hoping I will be an outlier for this treatment as well. 
  • There were a whole bunch of other side effects listed. Sixteen if my memory serves. Again, the oncologist feels that the side effects of this drug will be significantly less bothersome than RVD + Pano. Let's hope he is right.
  • This treatment requires a "Port-a-cath" aka "A port". Until now, when they wanted to put anything in or out of my body, they just stuck a needle into a vein. That does not bother me. But with Melflufen, they need to do this via a port. What bothers me about this is that it is similar to the "PICC" line that I had a few years ago. This DID cause a blood clot in my arm. My oncologist says I need not worry about this because I am on blood thinners - and won't be taking Revlimid - and also this was a vein clot - not an arterial clot. Vein clots are not what cause strokes. Instead they cause pulmonary embolisms. But as I said, there is a small chance of that.  
  • I am majorly concerned with the increase in Dex (Dexamethasone AKA Decadron). I have been taking 12 mg of Dex every week. When I take it, I have trouble sleeping for one or two nights. It also makes me easy to get frustrated and angry over trivial matters. I become much nastier - even more nasty than my normal self. And then there is that fact that it makes me more talkative - if you can imagine me being "more talkative" - and it lowers the "Brain to Mouth Barrier". There is no telling what I might say. And with this new treatment, they will nearly quadruple the dose to 40 mg. I fear that sleep will become a distant memory and that I will turn into a monster. We'll see what happens.  Send condolence cards to Barbara.
On the bright side:
  • The two worst side effects of RVD + Pano have been diarrhea and numbness in my feet. These had been slowly getting worse although they are both still tolerable. These are not side effects of the new treatment. Under the new treatment they might start to get better. They almost certainly will not get worse. Too bad I loaded up on Imodium a while back. Let me know if you need any. 
  • I will have to go to Dana-Farber only once a month instead of three times per month.
  • I figure that if they run out of treatments to try, I can always go back to RVD + Pano. Who knows if it will work again, but I get some comfort out of having that as a backup.
  • The change in my treatment gives me something to report in this blog. Much more interesting than "No news is good news."
As you might be able to tell from the tone of this posting, I am not terribly thrilled about this development. I had almost convinced myself that RVD + Pano had turned my Multiple Myeloma from an incurable disease to a "chronic" one. I figured that my life could to on indefinitely with the only problem being the almost weekly trips to Dana Farber, which I had gotten used to. Not too bad, really. These new developments have pushed me back into reality. But who knows? This new treatment might work just as well as the other one did. We'll see. The oncologist is optimistic, but then he always is.

Meanwhile, back in the wood shop, I continue to make bowls and other trinkets. Most recently, I decided to make some things that I can use on a daily basis. I made a coffee mug and a salad bowl. Normally, I use a water soluble glue, but for these, I decided to use waterproof glue. So far, they both seem to work, but I have not yet had the courage to use the coffee mug in the microwave. My fear is that I will open it up to find a pile of wooden segments sitting in a pool of coffee. 

I will keep you posted.

3 comments:

  1. Tx for update - fewer trips to DF, more bowls - Yay!

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  3. nickel1976@gmail.comMarch 24, 2019 at 3:06 PM

    Hey Warren! Your old protege Tina here. I follow your blog when I can because I want to hear about what you're going through and I spent the time before I was 30 working with cancer pharmaceuticals. But you probably know that already. Got a new gig in the pharmaceutical world again, and I was hoping maybe you could help me ring in the change by making me something in the wood shop. I'll gladly pay. Let me know :)

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