Decisions, decisions...every 3 months

As you know, having cancer is difficult. Even those who have beaten it, and are 5 years free and clear, still worry about it. Every breast exam, every blood test, every check-up is stressful. In my case, I go for blood work and a check-up every 3 months. As Dr. H says, it is not if it comes back, it is when it comes back. He does not say this to instill fear, he wants to be up front about my reality. I accepted this from the very beginning.

Multiple myeloma is not curable. At the time of my diagnosis average life expectancy was 4 years. It is now 5. :) There have been enormous advances in this field of research. In the last year or so 3 new drugs have been approved for use in relapsed myeloma. Three!!!

When I was diagnosed, I embarked on the common protocol at that time; stem cell transplant. I was an ideal candidate as I was young (in the MM world) and I did not have extensive bone or kidney damage. My induction chemo, or the chemo you get to prepare you for stem cell harvest, consisted of the chemo drugs Velcade (aka Bortezomib) and Cytoxin (aka Cyclophosphamide) and a high dose steroid called Dex (aka Dexamethazone). They called it CyBorD. It worked very well to kill off the cancer cells in my blood and bone marrow. There was a cost to this, though. I had to stop the Cytoxin a month early because it was affecting my bladder and it can cause bladder cancer. The Dex was just nasty and caused a weight gain of 40 pounds among other side-effects. I have written posts about them in the past. The Velcade started me down the road of peripheral neuropathy. This is nerve damage that affects the feet and sometimes the hands. Diabetics often have this same condition.

The stem cell harvest process was pretty straight forward and then the transplant. I wrote a lot of articles back then about those experiences and it might be worth going back and reading them. :) (Spring 2014) The chemo I got during that process was very high dose and it took a long time to recover. I was severely nauseated for almost 30 days and then pretty weak for 3 months. At that time I was told that I was in remission. Yay!! But I had a difficult decision to make.

Since MM is going to come back, I needed to prepare myself for the inevitable relapse. At that time (September 2014) there were only a few options available for treatment of relapsed myeloma.  There was the option of another stem cell transplant, and I had enough stem cells on ice to do that, or a protocol of Revlimid, Velcade and Dex. I already knew what the Velcade and Dex were like. I knew they worked the first time around, but what if they did not work the next time. Revlimid was a new commodity and was working very well for many MM patients. But what if...? I researched the pros and cons on maintenance chemotherapy. I did not get a lot of answers.

Even my doctors were indecisive about whether to do it or not. To this day, it is a inconclusive discussion amongst the oncologist community.There was conflicting research and not enough historical data to determine if it would make a difference in the long run. Without maintenance chemo it could be a month or it could be a few years before it came back. The average was 18 months. I could prolong the remission period by taking maintenance chemotherapy. This would give me 1-5 years before relapse. A small number of people stay in remission for much longer, but I have not heard of many. My first haematologist said he had one patient who went 20 years. This doctor was in his 70's and had floor to ceiling stacks of patient files in his office that did not fit in his file room. Not every one had MM, of course, but you get the gist.

Generally speaking, each remission period is about half the time of the one before it. I felt that if I could get 5 years on the first remission, not only did that increase my chances of living longer, but it also increased my chances of there being a curative or more effective drug protocol within my lifetime.

I decided to take the maintenance therapy. I started my daily pill of Revlimid (aka Lenalidimide - a close cousin to Thalidomide - which is also a MM drug) in October 2014. The process of obtaining the drug itself is interesting. The RevAid group gets the recommendation from the doctor. They then perform a telephone interview with me, then render a decision on whether I am a good candidate or not. Once they approved me they contacted the drug insurance company that we use and obtained a commitment to cover the drug at 80%. The drug company then agreed to cover the other 20%. In this way, it cost me nothing. Thank goodness, since it is $11,000.00 a MONTH.

I have discovered that if I was taking it for "treatment to prolong life" vs "maintenance treatment to delay relapse" it would be covered by the government of Ontario. My good friend, Elisabeth, is on 15 mg of Rev a day, vs my 10 mg a day, and hers is covered. She will gladly tell you that this was the best thing McGinty did during his term as Premier of Ontario!!

So here I am, over 2 years into my remission period and finding the side effects of the maintenance chemo limiting my mobility and ability to fully engage in activities a normal 54 year old woman should be able to do. I have severe fatigue at times. It will suddenly descend on me, sometimes without warning, and I need to lie down almost right away or I will be sick. Sometimes a 20 minute rest will help and other times it will be 2 or 3 days of rest and sleep that are needed.

This has eliminated my hopes that I could start to get fit by riding my bicycle. Al says I can ride it around the block again and again...like a 5 year old :) ... but I don't see the fun in that. I take an exercise program at the Wellspring cancer support centre  but I could only do one day a week and not two as it really tuckered me out. I wrote a blog post about my exercise program. When you read it, don't take a sip of your coffee or it will come out your nose! It is really, really low key!!! LOL! BUT...it tuckered me out for 2 days.

I am not complaining. I simply stating the reality. I am okay to have to plan my outings. I plan rest time in the days preceding and the days following an outing. When I need to rest, I rest. If I can't do something, I don't do it. As an example, just after Christmas, we had invited a handful of friends and neighbours over for an after-dinner visit. I had to cancel as I was so exhausted from Christmas that I was physically sick.

The other two main side effects have reduced my ability to venture very far on foot. The first, the peripheral neuropathy, has caused numbness and diminished feeling in my feet and lower legs. My feet constantly feel cold - like they are encased in blocks of ice - and they do not warm up with heat. They feel warm to the touch...but my nerves are telling me that they are cold. It causes muscle cramping quite often which is quite painful. I also get sharp, piercing nerve pain at night, especially if I have been on my feet a lot that day. It can be so bad that I need to take either a Percocet or a sleeping pill to get to sleep.

This causes me to think through and carefully plan my adventures each day. If I need to go to the mall, which entrance it closest to where I need to go? What shoes can I wear that day? This is dependent on the level of pain or numbness or if my arthritis has flared up. Am I tired? Will I get fatigued? Each movement away from my car is calculated with the estimate of how long it will take me to get back if I need to. My vacation needs to be planned so that I have the best experience possible within my limitations.

The other side effect is diarrhea. The Rev does something to make my body think that my bile is poison. So, sometimes, when my body starts its digestive process it suddenly wants to purge everything in my system at once. It is painful and uncomfortable. It sometimes is a one-time 10 minute ordeal, but often it is repeated several times over the course of several hours. If you have ever purged for a colonoscopy, you know how that bile burns your insides (and outsides)!. It is not pleasant. Thank god for Penaten cream. LOL!! I discovered a drug that helps and I take it twice a day, but it does not always work. It is a crap shoot.... LOL!!! Literally!!

So, I am okay with this new normal. I have accepted it. I am alive. I am able to do most things that I want to do. However, sometimes I do get depressed about the limitations in my life. Each 3 month appointment sees me in discussion with my doctors about "quality of life" and the decision is mine to make regarding staying on the maintenance chemo or not. If I stop taking it, it is likely, but not certain, that my remission period will be shortened. There are a number of choices of drugs I can take when I relapse, but I wonder if they will work for me. I also think about the tick tock of the timeline for remission periods. I will have to ask my doctor if this is still the case with the new drugs. They may not know yet, though, as they have not been in use long enough for there to be enough data.

So, I elect to stay on maintenance another 3 months. Then I will re-evaluate the situation.

I wanted to write this longer explanation of what this process is like because it will help you to understand that cancer is not just the effects you see on the outside of the person. There is an incredible amount of turmoil going on inside that has a deeper and more profound affect on them. We hear a lot about "invisible illnesses" and this is one of those. I may look good...Damn, I look good!! LOL!! ... but a little makeup and a good haircut belie the amount of mental effort it took to get there.

Be kind to people. You never know what is really going on behind the obvious.