All magic comes with a price, dearie!

I had a check up today. It was the first time I was nervous about what they would tell me. I have been in remission since my stem cell transplant in May, 2014. Lately I have been so very tired all the time and I was worried that this might mean that my cancer beast had awakened.

I worried for no reason. All is good in remission-land! The fatigue is caused by the maintenance chemo drug that I take to keep me in remission longer. I guess I thought that it would get better in time, not worse. <sigh> I have written in previous posts that there is a price to be paid for cancer survival. As Rumpelstiltskin says in the TV series Once Upon a  Time, "Magic comes with a price!" 

Contrary to what some people think, there is a lot of work going on in cancer research. New treatment protocols are being approved all the time. They are releasing them much sooner than in the past. No more are they taking 10 years to fully research long term effects before allowing them into mainstream use. This is a blessing and a curse.

The blessing is that there are drugs that can help right now...and you feel as though you are actually doing something to battle the beast. For those who have relapsed and especially those that are refractory (not responding to therapy) the new drugs offer hope.

The curse part of it is that doctors don't know the long term effects. They can make educated guesses and provide this info to their patients, but ultimately, it is up to the patient to make a decision on their treatment based on very little information. It was this way with my decision to avail myself of Revlimid for maintenance therapy.

Studies have shown that Revlimid will prolong the remission period for Multiple Myeloma patients after stem cell transplant. There is not enough evidence yet to conclude that it will prolong the overall life expectancy, however. There are many possible side effects to this drug, and each patient reacts differently. The decision is left to the patient as to whether they wish to take Rev, and endure the side effects, and increase their "average" remission period from 2 years to 4 or 5; or to forgo the maintenance therapy and live a side-effect-free life for a shorter period. In both cases, the patient goes back into treatment to induce another remission period.

The first question to my oncologist when I was considering my options was, if being on Rev for 3,4, or 5+ years would build a tolerance to the drug, rendering it ineffective when I needed it for treatment purposes. He did not know the answer. There was no answer because they have only recently begun using it for maintenance, so there is no historical data. At that time there were very few choices of treatment aside from Rev. This was a big risk to take.

In the past 6 months there have been 3 new drugs approved for use in relapsed and refractory myeloma in the US. Three!!! It is amazing! This reduces that risk for someone like me, who has chosen to take maintenance therapy.

I also considered the advances being made with immunotherapy. This is amazing stuff. They inject you with a virus or disease -- like common cold, or measles, or polio -- that has been modified to attach itself to the cancer cells. Your immune system will then attack it and kill it. (This is a simplified explanation...for more info just google it.) It will take years to fine-tune this approach and if maintenance therapy can give me several more years, then it gives me hope for a cure within my lifetime! Well worth the risk.

This brings me to the "cost" of this miracle therapy. The side effects have been presented to you in previous blog posts, so I won't belabor it here. The biggest culprit for me is the fatigue. I am so, so tired. I will do 30-60 minutes of housework and then have wave of nausea come over me which is my body's way of saying "whoa!!" and I have to rest. Usually this means an hour of lying down and maybe a nap. This is in addition to the naps and rest periods I already have to take each day.

Is it worth it? Not being able to work, not being dependable or predictable when making plans, unable to do the things I really want to do, feeling lazy. Dealing with pain of peripheral neuropathy every day. Becoming confused and forgetting things or not being able to gather my thoughts sometimes. Is it worth it? YES!


YES IT IS! I may not be at the top of my game, but I feel as though I am fighting this beast with all the weapons available to me. If I can keep it down until the cavalry arrive, then I will be victorious in the end. It is worth it. From time to time I might get frustrated, and a little depressed, about the quality adjustment...but I am entitled. At the end of the day, I can function. I can fulfill my duties as a Mom, Daughter, Sister, Wife, Friend, and Pain-in-the-Ass (to some)! My new normal may not be all I had hoped it would be, but I can live with it. The price of this magic is worth it!