My maintenance chemo drug is called Revlimid...or Rev, for short. It will likely double the time I will be in remission. It truly is a miracle drug for Multiple Myeloma patients...but it comes at a hefty cost.
It is free for relapsed Myeloma, but not for those using it for maintenance therapy. Luckily, the drug plan we are on picks up 80% and the drug company picks up the other 20% so we don't have to pay the $11,000.00 a month price tag. The financial cost, however, is not what I am going to talk about today.
The side effects of Relimid, or Lenalidomide, (the generic name) are varied from patient to patient. One website lists the most common side effects of Revlimid as: pneumonia, upper respiratory
tract infection, urinary tract infection, neutropenia, thrombocytopenia,
dizziness, dyspnea, headache, skin
rash, weakness, epistaxis, fatigue, cough, anemia, nausea, edema,
vomiting, muscle cramps, diarrhea, constipation, pruritus, arthralgia,
insomnia, limb pain, pharyngitis, abdominal pain, dyspnea on exertion,
back pain, peripheral edema, hypokalemia, nasopharyngitis, xeroderma,
and anorexia. Other side effects include febrile neutropenia, chest
pain, depression, leukopenia, pain, dysuria, palpitations, hypertension,
myalgia, increased serum alanine aminotransferase, hypomagnesemia,
rhinitis, peripheral neuropathy, loose stools, night sweats, upper
abdominal pain, cellulitis, hypoesthesia, hypothyroidism, dysgeusia,
erythema, xerostomia, diaphoresis, bruise, and ecchymoses.
I am not sure what many of these are...and I have pretty good grasp of the medical stuff...but I will say that I have a number of these. The most significant are fatigue, confusion (although not listed, it is likely one of those complex words in there), muscle cramps, diarrhea and peripheral neuropathy.
Fatigue is the BIG ONE. I have been so very tried these past few weeks. I generally plan out one outing or "event" per day at the most and will purposely schedule rest days before and after something BIG. It is working out pretty well for me so far. People do not see me as tired or sickly...I am always rested up when I see people. I am usually good for 4-5 hours and then I need a little rest.
It has been a little harder to get organized this year. Christmas has crept up on me. Although all my shopping and wrapping is done, I did not get out all the Christmas cards I had hoped to and some parcels were just sent last week!! I have not planned out my Christmas dinner menu and shopping and I have people dropping by on Sunday, and a big meal again on Monday as well. Yikes!!
My peripheral neuropathy is quite pronounced. This is nerve damage caused by previous cancer medications and then exacerbated by the Revlimid. It has become progressively worse, starting off as just tingling in my feet and calves. It then progressed to numbness, or a sleeping feeling. Pins and needles were next with extreme hot or cold sensations. Next came the pain. Sharp, stabbing pains in the feet and legs. Most days I just feel like I have sand in my socks, and at night I feel like someone is sticking pins into a voodoo doll's toes.
When I was on Velcade injections (Dec 2013-Apr 2014) they monitored for PN. They would ask me how it was going and I would downplay the severity because I knew that Velcade was the drug that would kill the myeloma cells and I did not want them to take me off of it. At the end of the 4 months it was still tolerable, but like a roast that is taken out of the oven to rest, it was still cooking.The stem cell transplant seemed to kick it into overdrive and by the fall of 2014 it was very bad. Then I started to take Revlimid and it has PN as a side effect as well. I manage the pain with 2 doses of Lyrica a day and sometimes percocet, sleeping pills, or medical cannibis at night.
I can walk a fair distance (although the arthritis in my feet has flared up as well) but I pay for it later with the pain that night. This has hampered my efforts to get more exercise... although, I admit I have not expended much energy in persuing alternative options. :)
The diarrhea was an issue until I discovered a medication that helped immediately. The Rev causes your body to recognize your bile as poison. At some point in the day, when my body would begin some digestion process, usually in the evening, I would have severe abdominal cramps and then about 45 - 60 minutes of washroom time. It you have ever seen one of those stool charts -- I would start at the top and end with the water...all in one "sitting". LOL. Not pleasant and certainly hampered my ability to go out without investigating washroom options first. The Colestid works very well, but if I forget to take it, I have the issue that day again.
Forgetting to take my medication, or getting it all mixed up is an issue for me. I don't know if it is Chemo Brain (see a previous post on that), menopause, or the Revlimid that is causing it, but I tend to get confused and forgetful. I have a pill sorter and I have found that I have made some significant mistakes in filling it. I now double check and then check when I take my pills as well...although I have been known to look at them, verify that they are the right ones, and then later discover I actually took the wrong ones (ie:morning vs night). I started to get confused when I introduced the Colestid (for diarreah) as it has to be taken an hour before a meal and not within 1 or 4 hours of some of the other meds. With my fatigue causing me to sleep late many mornings, I am behind the 8 ball when I wake up. Maybe I need to set an alarm and take the morning pills at 8, then go back to sleep so I can take the Colestid when I get up.<sigh>
I also put things away and then can't find them. It is very frustrating. I call myself "stupid" several times a day when I realize a mistake a made earlier when I was "foggy". The annoying thing is that I don't always recognize that I am in a fog until later when I try to remember what I did. Some days I just know that I am stunned. I will tell Al that I am stunned that day and he watches to make sure I don't do dumb things. LOL!! I have never done anything dangerous...and I don't drive if I am really tired or feel out of it at all.
The mental challenges affect my ability to multi-task or take on complex thinking tasks.I will often get the mail and stock-pile it until I feel able to deal with the opening, sorting and other actions associated with the bills and correspondence. It is the same with phone calls and other conversations. Sometimes I cannot find the word I am seeking or I lose track of my thoughts mid-sentence. Names of people sometimes escape me and I often repeat myself. At least I recognize it and admit to it...it is not severe...just an annoyance, but it can be frustrating and scary at times.
The muscle spams are another frustrating side effect of the Rev. I will reach for something and a muscle in my arm or had will go into spasm. Not for long...10-15 seconds maybe, but ouch! One night at dinner at The Keg, I was sitting in the back of the booth and my ham-string suddenly spasmed. I tried to straighten my leg under the table, grimacing and moaning at the same time and the waitress thought I was having a seizure I think. LOL. Again it did not last long, but yikes, did it hurt! I take magnesium supplements, topical magnesium oil, and epsom salt baths to increase the level of magnesium in my body. It is helping.
All in all, these side effects are minor. They do affect my day to day activities somewhat, but I am alive and still in remission 19 months after my stem cell transplant! At the end of the day it is worth it!
I hope this post did not come off as a litany of complaints...it is meant to educate and enlighten others on how this seemingly invisible disease impacts those who are fighting it.
Please have a wonderful Christmas and New Years. Be safe and happy. I love you all. Thanks for tuning in!! xo
