On the Road Again

New treatment starts today.

The drug is called Melflufen. It sounds like one of those funny names they come up with for Viagra, but the drugs are not related - at least not as far as I have noticed so far.

Apparently, there were a bunch of tests I had to pass before to qualify for this clinical study. I passed them all.

I also had to get something called a "port". They insert this thing under the skin on your chest.

As you can see from the image above, I was lucky enough to get a "2-Holer" (medical term). Then when it comes time for treatment, they don't have to stick a needle into my arm. Instead, they stick the needle through the skin on my chest and into the "port". They tell me that this is better. The only advantage I can see is that the nurse has a bigger target for the needle. The other reason is that the Melflufen can damage the small veins in my arm. With the port, the chemical goes into the large veins around my heart. Is is better to damage those?

They installed the port about a week and a half ago. This went smoothly, except that they told me that I did not have to stop taking my blood thinner. Therefore, for the first several days, the bruising got worse every day. I ended up with "PTSD". (Purple Tit Syndrome Disease).  Eventually, I stopped taking the blood thinner on my own. I wanted to stop the bruise before it got all the way down to my navel. Once I stopped the blood thinner, the bruising started to fade.

Still, having this thing there sort of gets "under your skin". Well, actually, it is under your skin. But it doesn't hurt, so it is not a problem.

So, the next question is side effects. When the doctors talk about this, they say that "usually side effects are minimal". But then when you read the disclosure form, it scares the crap out of you. It talks like things like anemia requiring blood transfusions, etc..

So, here I sit in the chemo chair at Dana Farber waiting with bated breath for my first shot of Melflufen to show up from the pharmacy. I will let you know how it goes. 

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.

Mose Nose

I was not sure whether or not to do an update, but I could not resist the subject line. Actually, Barbara tells me that is it spelled "Mohs" rather than "Mose" but I took poetic license.

This morning, I had Mohs Surgery on my nose. Some time ago, I developed a sort of wart-looking thing on my nose. I liked it. Thought it added character to my visage. Barbara did not. She insisted that I visit a dermatologist. They said it was some sort of basal skin cell carcinoma. They recommended Mohs Surgery.

So, this was how we spent our morning. Not all that bad really. I now have a big bandage on my nose. It makes me look a little like Bozo the Clown, though the bandage is (unfortunately) white rather than red. They said I might end up with a black eye or two. I will tell people that Barbara hit me. They will no doubt express surprise that it she did not do so sooner.

All went well this morning and my "Mose Nose" seems to be well under controls.

Where I am not doing less well right now is that my Multiple Myeloma numbers are going up. This means that my doctor's latest treatment idea, avoiding the drug that he thinks caused my stroke, is not working. We need to meet with him soon to discuss other treatment options - of which he says there are quite a few. On the other hand, he does not seem to be in that much of a hurry because he says my numbers are going up slowly enough that dealing with this is not urgent.

Easy for him to say. But I am not freaking out about this.

So, that is the report.

Back on Track

Barbara has told me that I should do a blog update even though there is not much to report. She says that my loyal readers might not realize that "no news is good news".

Anyway, the good news is that I am back on my "normal" chemo schedule - which means I am on a 21 day cycle. I go into Dana Farber on Days 1 and 8 (Wednesdays) and then I have a week off. All I do when I am in there is get poked and prodded and they give me a shot of Velcade. Seems like a lot of effort to spend 5 seconds getting a shot. They also draw some blood. I looked up "Bloodletting" on the internet and this seems pretty close to what they do to me. It claimed that this went out with the the Middle Ages. Apparently not.

Anyway, it seems that I am back on a regular schedule.

You may recall that I had a small stroke back at the end of October. They took me off of chemo for a while, and put me on blood thinners. No problem until mid-December when I banged my leg and apparently triggered some sort of internal bruise. My leg started to swell up. I talked to two doctors who both told me to continue with the blood thinners. My leg continued to swell. I went for my previously scheduled chemo appointment. The oncologist looked at my purple leg and said, "You/re not still taking blood thinners are you? So, I stopped taking the blood thinners for a few weeks and they suspended chemo. It took several weeks for the leg to get back close to normal.

So now I am back on a regular schedule. The difference from before the stroke is a daily shot of a blood thinner and a couple of additional pills. The pills are small enough that I hardly notice. Also, I am no longer taking Revlimid - which was one of the primary chemo drugs. It remains to be seen how well this regimen will work. My numbers went up when they took me off of chemo. This was expected, but I was hoping that they would come back down faster than they have been. We'll see what happens over the next few cycles.

Meanwhile, and unrelated to my disease, the device we use for video streaming had been giving us trouble. I ordered one of those Amazon Fire TV Sticks. We have been using it to watch a series where one of the main characters is named Alexis - which is very close to the activation word on our Amazon Echo. So, now we have the characters on the TV calling out and we have our Amazon Echo responding. It is like we have our computerized machines talking to each other. I am not sure what they need us for. 

The Crippled Lumberjack

The last week has been a bit tough - nothing too bad, but worthy of a blog update,

The problem started last Friday when I was in NH. A large white pine had fallen and I wanted to try making a very large one piece bowl. I went up there with m chain saw and liberated a few sections. As I was carrying one log - about 18" in diameter and maybe 16" long, I started losing my balance. I tossed the log forward and then allowed myself to fall backwards where I knew the ground to be relatively soft. Unfortunately, I banged my thigh on a bit of a stump. Didn't hurt much, so I rolled the log to the truck - along with another similar log - and was on my way.

The next day, the leg hurt a bit more. No big deal. I drove back to Fox Hill as planned.

On Sunday, it was still getting worse. I figured that there was a bruise in there somewhere and the internal bleeding was continuing. I called my primary care doctor. I asked him if I should stop the anti-coagulants and he said definitely not. I asked him if I should have them check it out in the ER and he said yes.

In the ER, I asked them if I should stop the anti-coagulants and they said definitely not. They took a completely unnecessary x-ray and sent me home.

The leg continued to get worse until I had my regularly scheduled visit with my oncologist. By this time, I was using a wheel chair because of difficulty walking.He took one look at my very swollen leg, which by this time was pretty much all purple colored and asked, "Why didn't you stop the anti-coagulants?"

So, he cancelled treatment for that day, but told me he was happy with my numbers which we had a couple of cycles. I will start up again in two weeks. Meanwhile, no chemo therapy and no anti-coagulants.

So now it is Friday. I seem to be better than I was yesterday and might be mostly ready to give up the wheel chair - possibly in favor of a walker.

What really upsets me is that I have not been down to the wood shop for almost a week. Hopefully in a few days. I have to get back to work on that log I was carrying when I fell.

As you know, I normally like to include a relevant photo or two. I considered a photo of my swollen black-and-blue leg, but decided you might not need to see it.

Back on Chemo

Things are a little bit different since my stroke. Since the blog is supposed to keep any readers updates as to what is happening with me, I figured that my faithful readers (if any) should get an update. Also, this blog is my personal record of what I am doing. So, here goes:

I am back on chemo. Same Old, Same Old? Well, not exactly. There have been a number of changes since my stroke.

1. They had me take a two week break from chemo. Initially, this was going to be one week, but they changed it to two weeks at the last minute.

2. I am now taking Enoxaparin which is generic for Lovenox. Well - not tactlessly "taking". It is more that I am "doing shots". Putting it that way makes it sound like more fun than "injecting myself". Actually, this is a pain in the butt. Well, to be more exact, it is a pain in the belly. I give myself these injections twice a day - in the belly rather than in the butt. Fortunately, my belly has increased in size over the last couple of years, so I now have what they called in the Air Force, "a target rich environment".

3. I am now taking Atorvastatin (generic for Lipitor). Even though my cholesterol is fine, they tell me that this reduces the chances for another stroke.

4. I have been wearing a heart monitor for the last two weeks - with two more weeks to go. I stick this sensor onto the middle of my chest and it records and transmits heart pulses. They want to find out if I have Atrial Fibrillation which can throw clots. The good part about this is that the monitor thing has flashing lights. Barbara thinks it makes me look like a robot. I don't know whether that is good or bad, but I am trying to learn to walk like a robot in order to stay in character. I will also start working on my "robot voice".

5. The biggest change is that they want me to stop taking Revlimid. This is one of the four chemo drugs I have been taking for the last 4+ years that has held my cancer at bay. This is what I find the most scary. I will also note that they waited until the last minute to tell me about the change, so I had already ordered the next set of pills. I now have more than a thousand dollars (my cost) of Revlimid in a drawer in my office.

So, the big question is whether the new treatment regimen will hold the cancer down without the Revlimid. It will take a few cycles before we see how it is working. Presumably, if it does not work, the doctors have some more tricks up their sleeves. For example,  there is this whole Immunotherapy therapy thing that they have not tried on me. And then I am also thinking that we could always go back to the original "RVD Plus Pano" and take a chance that the Enoxaparion will be enough to prevent more strokes.

Meanwhile, I have been feeling pretty good. I am tired and sleeping a lot, but all in all I am doing very well.

One thing that is kind of funny is that I have been cursing one of my other drugs, Desxamethosone for five years. It makes me feel wired and I sometimes have trouble sleeping for a couple of nights after taking it. But, last week, I noticed that I was feeling rather draggy. I had lost a lot of my "zip". But then a few hours after taking Dex as the start of this latest cycle, I was back to my old lively self. I figure it must be the Dex. I think it has me on a permanent high - like a caffeine high. That is probably why they have me taking it even during my break weeks. Better living through chemistry and all that. Highly recommended.

Blood is no longer thicker than water

Blood is no longer thicker than water - at least not my blood.

They sprung me from the hospital late Wednesday afternoon. They never did particularly find out what caused my stroke, so they decided to thin my blood by getting me to take Lovenox. Well, I don't take it; I inject it, twice a day. They also want me to start taking statins - not that I have high cholesterol - just that it seems to reduce recurrence of strokes. They also tell me that it might make me feel achy.

My hospital stay was relatively uneventful - as it should have been given that all they did during my stay was to give me a single CAT scan which took about five minutes. I went in Monday at around 10 AM and cooled my heels in the ER for 11 hours until about 9:00 PM. Barbara and I sat there and read books. They then moved me to a shared room on the 16th floor where they connected a bunch of wires to me using special tabs. These become one with the patient's skin, so that they cannot be removed. These tabs are then electronically wired to some device that alerts the staff if you start to fall asleep so they can come in to measure blood pressure or poke you for some other reason.

But, the important thing is that I am now out and can get to work shooting up the drugs that will thin my blood to prevent further strokes.

My oncologist tells me that he is taking me off of chemo for a couple of weeks so that I can recover. I am looking forward to the break. It will be interesting to what happens with my side effects.

So, after all of this, I seem to be pretty much OK. I might not be quite as solid on my feet as I was a week ago, but I don't have any trouble standing or walking, so I am not complaining. I will stop writing now. I have to go give myself a shot.