Tuesday, October 22, 2019

No More Melflufen

In my last post, I mentioned that Melflufen did not seem to be doing anything for me but that they wanted to get the results of last Wednesday's test before reaching a definite conclusion. Today, they called me to tell me not to bother coming in tomorrow for my scheduled treatment. The test confirmed that Melflufen is not helping me - at least not much. This was no surprise to me. They asked me if I want to come in tomorrow anyway for IVIG, I politely declined.

The plan is for me to come in next Tuesday and meet with my oncologist. Hopefully, he will have some ideas as to what to try.

Meanwhile, I am feeling pretty good. I mentioned that last week's transfusion helped, but did not make me feel like Superman. I expected immediate results, but the improvements have come slowly. I have been feeling a little better every day. Not sure why, but it could be that it has been long enough that the negative effects of the Melflufen are starting to fade. I am still not my old self, but I have again started using the stairs at Fox Hill and while I get winded after two flights, it is not too bad. A year or two ago, I would do 30 flights as a short workout. Maybe I can work back up to that.

One thing that has come up is that I am getting pains at the base of my skull. This has slowly been coming on for the last 8 or 10 months. The nurse practitioner sent me for an MRI and based on this, concluded that I need physical therapy. After reading the report, her conclusion is not passing my BS detector and I have asked my Primary Care Doctor to take a look as see if he wants to recommend someone who knows more about this stuff.

Someone recently asked me about the lump in my leg. That is gone. They did an ultrasound then a CT scan then an MRI (your tax dollars at work). I have decided that the problem was a paper towel holder mounted under my desk that kept hitting the leg at the site of a previous injury. I removed the paper towel holder and the cure started immediately.

That's all for now. I will try to post an update after we meet with the oncologist.

Saturday, October 19, 2019


I want to start this posting by reminding my faithful readers of the reason for the blog. I started it in case people were wondering about the details of my status and treatments. When you casually ask either of us "How are you doing?", you will always get the same answer from Barbara or me. It will be "Good, Very Good, Fine, Great" or something like that. That is what people want to hear. They don't really want a detailed "organ recital". They want to hear that their friend is doing well. They don't really want to know the details. And it is not because they don't care; it is because they do.

While I don't mind telling people about my medical details, going through it repeatedly can get tedious. That is why I take the time to put it into the blog. Please don't be offended if we ask you to check the blog. That is why it is here.

As a reminder, if you do call us, use our cell phones (781 area code). Avoid using the 603 number because we have it going directly to voice mail (thank you robo-callers). If you leave a message, it might take several days for us to get back to you. We no longer have a PO Box in Meredith, but get mail in both Meredith, NH and Westwood MA.

Please do not confuse me with the "Warren Clark" from Keene, NH who was just sent to prison for dealing drugs. It is NOT ME. Trust me. More drugs is the last thing I want in my life.

So, here is the latest status.

I am in a sort of limbo, treatment wise. We went to Dana Farber on Wednesday with the idea of starting "Cycle 5" of Melflufen. They decided to hold off a week. I was not surprised. Melflufen messes with the blood producing stuff in my body. I was low on both red and white blood cells. This did not surprise me since I was getting winded just going up a flight of stairs. I attributed this to the low red blood cell count. Instead, of Melflufen, they gave me a blood transfusion. As long as I was there, I got Neupogen to increase my white blood cell count, a flu shot, some Tylenol and Benadril to  help with the transfusion and finally some Zometa to help my bones. For all I know, they might have popped some other stuff into me while I was not looking.

I had hoped and expected that the blood transfusion would make me feel like Superman. It helped but I still do not have my normal endurance. But realizing that I don't feel like Superman, reminded me that I bought a Superman costume for $5 at a yard sale several years ago. I got it home and it did not fit so I stuffed it into a closet and forgot about it. But guess what? Remember that appendicitis from this summer during which I lost 25 pounds? The Superman outfit now fits great. Now I know what I am wearing at the Fox Hill Village Halloween party? Gotta take the good with the bad.

We will be going back to Dana Farber next Wednesday where they will reevaluate the Melflufen treatment. I takes a week for test results from last Wednesday to come back. I will not be surprised if they decide to stop the Melflufen since it did not seem to do much during the last couple of cycles.

If it is not working, there are a number of other treatments they can try, so I will report back. 

Tuesday, October 1, 2019

More Medical Adventures

It has been a while since my last update and I will report on a couple of small but interesting medical "events".

First, a few weeks ago, we were on a picnic and I suddenly saw a gnat flying in front of me. I swatted at it a couple of times before I realized that there was nothing there - other than a bunch of tiny specs.

I immediately freaked out. Clearly there was only one explanation; I figured I going blind.

I managed to get an appointment with an ophthalmologist who assured me that it was just "floaters". What a relief. So the gnats are still flying around in front of me.  I am still swatting at them. There aren't as many has there had been. I think I might have gotten a few, 

The second thing that happened was that the following Sunday, I pretty much lost the ability to bend my leg. There was a lump that was very sore. I got to thinking that this could be due to a blood clot Barbara and I headed to the ER - in Laconia (the next town).

The doctor there ordered an ultra-sound and the report came back that there was no clot, but that there was a mass that was "highly suspicious for malignancy". That got our attention.

So, I reported this to the oncology team at Dana Farber and they ordered an MRI - which came back "inconclusive", so they ordered a CT scan that also came back inconclusive. Meanwhile, my leg was feeling better every day and the lump seemed to be shrinking. Also, this was the exact spot where I had injured the leg a year ago. So, we have all decided to "watch and wait." I really don't think this is anything I need to worry about.

Meanwhile, I am still on the Melflufen Clinical Trial. I am back to having enough energy to spend several hours per day in the wood shop. The best news is that I don't have to go to Dana Farber every week. They let me get the weekly "CBC" tests done in Laconia. I only have to go to Boston once every 4 weeks.

The bad news is that it is not clear that the Melflufen is actually knocking the cancer down. So, I think they will have me do maybe one more cycle and if they don't see an improvement, the oncologist will look into his bag of tricks to see what else he can pull out.