Still Kicking!
I got a call the other day from a fellow boat designer with whom I had corresponded some time back. It seems he had stopped by my site and read Life With Cancer and became concerned as I hadn't published an update in quite a while. I am glad to say he was happy to hear I am doing pretty well! I probably should make it a point to keep everyone better informed about my condition, who wants to take the chance that the boat designer they have hired may not survive the design process? So, without further ado, here is an update:
As of last fall, I am no longer receiving twice a week IV treatments of Aloxi, Velcade and Dexamethasone. This is actually both good and bad news, though mostly good. The main test used to keep track of my condition is called the M-Spike. I won't go into detail as to what it means, but when I started treatment my M-Spike was just over 4, which is high for a normal person but not terrible for someone with active Multiple Myeloma. If the treatments are successful, that number will drop, with 0 being considered full remission. My M-Spike last fall had gotten down to the .3-.4 range and stabilized there. With the numbers not improving and the neuropathy in my feet getting worse, my oncologist decided it was time to change direction and put me on another drug called Revlimid. The great advantage to Revlimid is that it comes in a pill! She also cut back on the Dex and I now take that once a week in pill form as well. I was receiving 80 mg's of Dex a week when I got it through the IV's, then when I switched to pills she dropped it to 40 mg's a week. Recently she dropped it to 20 mg's, but mainly because it is making me so fat! It also gives you really bad indigestion, so the lower doses are helping with that as well. What is the result of all of this? Well, my last M-Spike was .1 and we are waiting for the latest results due back this week. I am keeping my fingers crossed that the next M-Spike will show a big fat ZERO! If the news is good, I will probably be taken off all the meds and just monitored until the Myeloma comes back. Then we start all over again . . . .
This is not to say all is sweetness and light at this end though. My feet are still completely numb, which is both good and bad. The bad is that my feet are numb! The good news though is that the sides of my feet, which had been so sensitive to touch that I couldn't sleep due to the pain caused by the weight of a single bed sheet, are now also numb! Funny how that can be both good and bad at the same time! I can walk better now, although running is out of the question. I can ride my bike again and am trying to get back in the habit of doing so regularly. Before I got sick, I rode 20-25 miles a day, 5-6 days a week. Now 8 miles is a struggle. I am driving again, which coupled with a major amount of work on my 1988 Mitsubishi Mighty Max, means I can now drive myself to the doctor every week for my blood tests. This saves my mom from having to take me, which is good considering how much worse my father is getting. I do have trouble with shoes though, nothing is comfortable! I have tried on every pair of athletic shoes in a number of stores and just about given up in frustration. Thank heavens for Teva and their sandals. They are the only foot wear that I have found I can wear comfortably for any length of time. In fact, I was so worried that they would stop making the one thing that I could wear that I bought a second pair to put in the back of the closet for when the first wears out! Now if this cold weather would clear up . . .
The Revlimid for me at least, has been pretty much side effect free so far. I am lucky to have health insurance though as it costs around $165,000 a year! It is a form of Thalidomide, which some of you may recall caused all manner of horrific birth defects back in the 1960's when it was given to pregnant women. With all the lawsuits that caused, you can imagine they don't want you to get anyone pregnant! You can only get a one month prescription for Revlimid. I take it each night before bed for 21 days and then get 7 days off. Each month the doctor has to write a new prescription. Then I get a phone call from the special pharmacy which supplies it as they have to explain each and every time that I am NOT to get anyone pregnant, donate bodily fluids, share my meds with anyone (!) etc . . . Then they connect me with the manufacturer of the drug who tells me the same stuff all over again and has me take a survey saying I haven't broken any of the rules in the last month. After all of that, they send it to my house via UPS. At some point you would think that Niki the German Shepherd would get used to the UPS guy, but she still treats him like the most evil person on earth, barking, growling . . . basically putting on the full blown I AM GOING TO EAT YOU display!
I have received a few new drugs besides the Revlimid. One is Procrit, which is a trade name for EPO, the drug that is getting all the bike racers in trouble. I guess that means I'll never win the Tour de France! While EPO has gotten a bad rap with some due to it being abused, for those of us with cancer it is a life saver. When my hemoglobins fell to a dangerous level a month or so ago, two shots of EPO brought them back up to normal levels within a few weeks. It also brought my hematocrit up to normal levels, something that hasn't happened in years! This is a very dangerous drug and the release form I had to sign will scare the crap out of you. Basically it starts off by saying it can kill you. Then there is the note that, I swear I am not making this up, tells the doctor not to give it to anyone who can be cured! Why anyone would risk taking it to win a bike race I'll never understand. My iron levels also fell pretty far recently, so I was given a couple doses of something called Feraheme. Hopefully that did the trick, I am still waiting for confirmation. I have to carry a card around with me that says I have taken the drug in case I need an MRI. Evidently the technician giving the test will need to recalibrate the way he does things due to my iron levels. I figured they have to tie me down so the magnets don't cause me to levitate off the table! Oh, I almost forgot the custom formulated foot creme the neurologist prescribed. It costs almost $1,000 for 90 grams! But it does reduce the tingling in my feet. I tried an over the counter version, but it smelled so bad my neighbors complained to the county about noxious odors eminating from my house.
I do still get IV treatments every 6 weeks of a drug called Zometa. This is a drug that was created to fight osteoporosis in little old ladies, but it's also being used to help keep Myeloma from sucking all the calcium out of your bones. There is some debate as to whether it can cause secondary cancers, but I don't worry about that much. These days, how can they tell what gave you the cancer as EVERYTHING seems to give you cancer! Last, but not least, my immunoglobulin's are pretty much wiped out. So if you are infectious, stay the hell away from me!
As for my emotional state, it is much better. I am trying to be more hopeful these days and have been reading more and more about the new drugs being developed and the longer life spans of people with Multiple Myeloma. I recently read a description of Myeloma that made me think of the Road Runner and the Coyote. Myeloma is like getting hit by a truck. You get up and dust yourself off, only to find the truck driver has gone around the block to get you again! While there is still no cure and any remission will likely only be temporary, I still should have quite a few years left to design boats. So, if you have been reluctant to order plans or contact me about that new boat you want to build, don't be! I may get tired easily, sleep a lot, limp around in sandals and am subject to bouts of chemo brain from time to time, but I am still alive and kicking! Well, maybe kicking is the wrong word . . .
Timm Smith
February 5, 2013
UPDATE:
February 8, 2013
The latest Myeloma panel came back today and my M-Spike is still .1, so no complete remission yet. The doctor feels I have stabilized again. Since I am so close to remission and all of my other tests look good, she wants me to finish my latest round of Revlimid and Dex and then stop taking them for a while to see how things go. So, another good news bad news type of situation.
Something I haven't mentioned is the damage to my chromosomes. Bone marrow studies done after I was first diagnosed showed the Myeloma has altered my chromosomes, which is generally a sign of a poor prognosis. Everyone is born with 46 chromosomes. The Myeloma has killed off two of mine, another has been modified and a fourth is not where it belongs. I think it has gone on the run and is in hiding! This chromosomal damage may be part of the reason I haven't gotten to remission yet. It is bad enough when you are told you have an incurable cancer, but then to be told you have the bad version is really over the top! I have an incurable cancer, isn't that bad enough!
Oh well, I'll keep going as long as I am able and try to look at the bright side. Today the FDA approved a new Myeloma drug called Pomalidomide, a newer version of the drug I am currently taking. This is the second new Myeloma drug that has gotten approval in the last year. If I can keep going long enough, maybe they will come out with some new treatment that extends my life indefinetly.
If you have the ability, I'd appreciate it if you could donate to The Leukemia & Lymphoma Society. Besides the research they fund, they have also provided me with some financial support with all my doctor bills.
UPDATE 2:
April 20, 2013
Success! A couple of days ago my oncologist called to tell me she had run a new test that is more accurate than the M-Spike and it came back NORMAL! I have rarely ever been called normal, but I'll take it! I am now in complete remission. How long it will last is anyones guess, let's hope it is until they find a cure!