How I am really doing

Over the last week or so, many of my friends at FHV have asked the ubiquitous question, "How are you.". Well, the answer is complicated. But rather than going into details, I respond that I am fine or great or whatever comes to mind. I then add that they can read the blog if they want the details.

Fact is that last week was a bit rough - primarily because of pretty severe leg cramps as night. In the past this might have occurred 2 - 4 times in a night and I could usually get them to go away by walking around for 2 ro 3 minutes then falling right back asleep. But last week there were several nights where I would sleep for 30 or 40 minutes and then the cramps would lessen but not disappear completely after 10 minutes of walking. This would continue for most of the night meaning that I would be sleep deprived.

I went to the drug store and "invested" in a broad range of leg cramp cures - which may or may not have helped. Tonic water (with or without gin) seems to have no effect. Drinking lots of water does seem to correlate with fewer cramps, but is by no means fool-proof.

I have tried sleeping during the day, but this is sometimes difficult and usually results in more leg cramps. Yesterday, the leg cramps happened in the car on the way back from Dana-Farber. I can still drive safely, but it is most unpleasant.

Last night I tried a magnesium pill. I had previously decided to avoid magnesium as preferring the cramps to diarrhea. Last night was not too bad cramp-wise. Was it the magnesium, drinking lots of water. talking my weekly 40 mg of "Dex" or the phase of the moon? Who knows? Anyway, I am not complaining. It was a good night.

As I write this, we are sitting on an airplane on the way to a wedding in Palm Springs. I was worried about getting the leg cramps during the flight, but so far, so good.

Another problem I had last week was the start of severe itching of my scalp. This was a surprise to the care team. It was driving me crazy (crazier than normal), but I found that anti-itch cream seemed to make it tolerable. But the itching gradually lessened to the point where is is not big deal. Now when I scratch my head, people around me assume that I am just thinking.

And then there is the neck pain. Yeah, it is still there and it varies. Sure, it hurts sometimes, but it does not much impact my quality of life. Not bad at all today, but is this because of the Dex I took yesterday (steroid) or that I am getting used to it or whatever. I have no idea.

One good thing about this clinical trial is that it is a 28 day cycle and all treatments are oral. On "Day 1", they had me there for most of the day. The "treatment" consisted of taking the pills and then getting tests over a period of 5 hours. This after waiting for several hours for blood tests in the morning and an exam by a nurse practitioner then another wait for a chair in the "infusion area" where I did not actually get an infusion.

Yesterday was my weekly visit (Day 8). Relatively easy No exam. Blood test in the infusion area. But then was the "funny" part. I had to bring my clinical trial pills - all of them - including the Dex. .The nurse took them and sent them to the "pharmacy" where they determined the "dosage" and took 4 of pills that I brought into a little bottle along with 10 of the Dex pills - which had to come from THEIR supply - they would not use mine. The then sent them back to the nurse with my original supply. I was then allowed to take the pills. This took about an hour. Bear in mind, that this EXACTLY what I do every morning when I take the exact same pills in the exact same dosage from the exact same bottles all by myself. I don't know why this seems strange to me. Perhaps there are some parts of modern medicine that I am not destined to understand. Anyway, the nurse gave me an EKG and sent me home. I was back at FHV by 10:30. Not bad and I expect next week to be even more efficient now that the nurse knows the routine.

Of course we won't have any idea if the treatment is working until around New Years. We'll keep our fingers crossed until then.

So - all in all, life is good. My energy is good - in spite of the lack of sleep. I continue to make my bowls. We are on our way to a wedding in Palm Springs. (Guess what they are getting as a gift. That's right a very nice bowl designed and build just for them.)  Hopefully this trip will turn out better than the last one. At least I don't have to worry about appendicitis again.

So, after reading all this, (and I would not blame you if you did not get this far), you will understand why I will nearly always answer the "How are you doing?" question by saying. "Great. How are you doing?" Much simpler that way and the blog is here for those who want more details. Don't you agree.

Happy Thanksgiving and Clinical Trial Started

Happy Thanksgiving everyone. Well, actually, Happy Day Before Thanksgiving.

I just started my clinical trial of CC0-220 (whatever that means) today. I will be taking this drug orally for the next 21 days and then I have 7 days off.

I can't say that I am thrilled. I was hoping to get a trial that combined this drug with Velcade. There are four "cohorts" and I got the one with Dexamethosone, but no Velcade. Also, I would rather be on the treatment from a year ago, but I am not. Long story there.

Before starting this clinical trial, they provided me with a "consent form". In the consent form, there was a list of possible side effects - 8 pages of side effects. I kid you not. Eight pages. Most of them, I already have to some degree or another.

This morning, they did a preliminary blood draw in "Laboratory Services". I then had an exam with a nurse practitioner on Floor 7. I then went to "Infusion" on Floor 6 where they gave me IVIG. They gave also me the 10 Dex tablets and drew 12 vials of blood and then gave me the actual CC-220 drug. Next they will wait 3 hours, draw more blood then wait another 2 hours and draw still more blood. That will be the end of the blood samples for today, presumable because by then I will be completely empty.

I have always previously been treated on Floor 7. Treatment for this clinical trial is on floor 6. I feel like I have been demoted. Plus my favorite nurse is on Floor 7. But the floor 6 nurses also seem very nice, though it might take them a while to get used to me.

On the bright side, they have a candy bowl on Floor 6..

So, now Barbara and I have 5 hours to kill while they watch me in case there are disastrous side effects. So far so good. I am using my time to process email and work on the cancer blog. Those on the joke list will also most likely benefit.

Have a great Thanksgiving everyone.

Starting another clinical trial

What a day.

Apparently, I have been accepted for a new Clinical Trial.

This one is called CC-220 and it is a clinical trial for a drug called Iberdomide. It is in the same family as Revlimid, but lots more potent. Revlimid is one of the drugs that worked so well in a cocktail So we are both hoping that this new thing will work for me.

There are four "cohorts" to this trial. Each gets several helper chemicals to go along with this. I have not yet been assigned to a cohort. This assignment will be random.

So today I was screened Here is how my screening day went.

• Our day started at 9:30 when we left FHV for a 10:30 blood draw at DF. 
• At 11:30, we met with the hematologist to discuss my blood thinner medication. This appointment had been scheduled for months and had nothing to do with the clinical trial.
• At 12:30, I was to meet with my Kathy, the Clinical Study Nurse to sign the paperwork for the clinical trial, but she was delayed by about an hour. 
• This made me late for my next appointment which was another "blood draw". They did not tell me why they needed more blood, but I do not question these things. This delay threatened to delay the other appointments going forward, but I was rescued by my "usual" infusion nurse who was not assigned to help me today. She  saw me in the waiting room, found an unused room and did the blood draw, getting me close to being back on schedule.
• Next I was almost on time for my "Bone Marrow Biopsy". The poked a hold in my lower back and dug out some bone and marrow. I was glad when this was over.
• My EKG was scheduled for 3:30 and this happened on schedule.
• After that, I want to X-Ray for a "skeletal survey". This consists of 17 separate x-rays. 
• As I write this I am back at "Infusion" where the nurses know me and try to help me as much as possible. They brought me in early and they have already ordered the blood for the transfusion they are giving me. Not sure when I will get out of here. Best estimate is around 8:00 PM. At least the traffic back to FHV should not be bad.

So, that is today. Yesterday, we visited Mass General. I wanted a second opinion, so my primary care doctor set this up. I had been upset because I was "between treatments", my numbers where high and getting higher, and I feel that the cancer was/is damaging my body. And I was not getting any treatment. After meeting with this the lead MM doctor at Mass General, I have come to the following conclusions:

• My current oncologist is brilliant and strongly believes in the clinical trials he is running.
• He may be excessively biased toward clinical trials, occasionally to the detriment of patient outcome.
• I now believe that changing from the regimen I was on when I had my stroke (RVD+Pano) was a mistake. I decided this after talking to the hematologist today and after getting the second opinion yesterday. Who knows how long it would have kept working, but stopping when we did was a mistake. Too late now to do anything about it the months that I was not getting a treatment that worked.
• I am upset that it has now been six weeks or so with no treatment. I still do not know why we could not have used my old RVD+Pano treatment until I was ready to start the latest clinical trial.
• Given where we are now, I am comfortable with being on the trial.

So, how am I feeling? ? Not bad, but I have a pain at the base of my skull that troubles me. It seems to be getting worse over time and I am worried that it might not be reversible. This is the main reason that I am so upset at being "between treatments" for so long. My oncologist says that he will order another MRI in a few weeks. 

But, if all goes well, my new regimen should start next week. It will be a month or so before we know if it is doing anything for me.

Meanwhile. my oncologist asked me about my other symptoms. I told him that the "peripheral neuropathy" in my feet seems to be getting worse. I have been applying cocoa butter twice a day, but he suggested that I start using a mixture of Cocoa Butter, Coconut Oil and Shea butter. On top of that, he wants me to mix in some Frankincense. Seriously? I thought frankincense went out with the Three Wise Men. Next they are going to ask me to mix in some myrrh.  

So, that is a lot to report. I tried to keep it as brief as possible. I will update once I know more.

Another Clinical Trial

On Wednesday Barbara and I spent 8 hours at Dana-Farber (DF).  During our visit, I got an EKG and an IVIG infusion.

We were supposed to meet with the oncologist at 2:45. We met at 6:45.The oncologist is recommending yet another clinical trial. They have not yet told me too much about it - like when it will start or how often I will get treatments. There are several "cohorts" in which I might end up some requiring two visits per week to Dana Farber. We will see what happens.

Given that my M-Spike numbers are pretty bad and getting worse, I am anxious to get started.

We have gotten used to these long visits to Dana Farber with lots of waiting. We spend the time on our phones and I bring a computer and sometimes watch Netflix. However, first thing on Wednesday, my glasses broke. One lens fell out of the frame and I was not looking forward to entertaining myself with one eye closed. But wait !!! I'm and engineer. I should be able to fix this, right?

For those of you who sometimes wonder if I am a "geek", you will now know for sure. Here is how I "fixed" the glasses:

Yup - that's right. I walked around Dana Farber wearing glasses that had been "fixed" with a rubber band. Surprisingly, I was able to see fairly well with the rubber band in front of that eye.

I also had a bit of luck last week. I will leave it to you to decide if it was good luck or bad luck.

Several weeks ago, while visiting Lake Region General Hospital (I don't limit my business to only Dana Farber), I noticed a "ghoul" in front of the gift shop. Knowing that Barbara likes Halloween decorations, I invested a dollar in a raffle ticket to win the ghoul. Perhaps I was the only one who entered, but I won. The woman at the shop asked me to get it as soon as possible because she was very sick of looking at it. Apparently, they had forced her to move it into the shop because it was reminding hospital patrons of why they were at the hospital; it looked too much like the "grim reaper". But Barbara loved it. We brought it to Fox Hill Village to add to their decorations and set it up outside the dining room.

Here is a photo of me with the ghoul. I am the one on the right.

So, that is the report. I will send more as I learn more. 

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.

Transfusion

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. 

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.