- The Myeloma Beacon - https://myelomabeacon.org -
Northern Lights: Rip Currents
By: Nancy Shamanna; Published: November 13, 2014 @ 5:07 pm | Comments Disabled
As you may remember from my July [1]column, I celebrated my five-year myeloma survival this summer.
I was particularly happy that I have not received any treatment since April 2011. Instead, I have comprehensive blood testing done and see my doctor every three months.
Unfortunately, the ‘watch and wait’ phase that I had been in since April 2011 is now over.
At the beginning of October, my blood test results showed that my M-spike had increased to 1 g/dL (10 g/L), and the serum free light chain ratio was at 11 (kappa light chains were higher at 77 mg/dL, lambdas at 7 mg/dL). All my other blood markers were in the normal ranges.
My doctor and I had observed this rising trend over the last six months. The numbers had more than doubled since the end of June.
In early July, my oncologist and I had discussed starting treatment once my M-spike reached 1 g/dL, so it wasn’t really a big surprise for me when he suggested during our October meeting that I go back on to treatment. I wasn't eager to do that again because I wasn’t feeling unwell in any way, but I saw the need of it.
I am now taking 25 mg of Revlimid [2] (lenalidomide) on 21 days, followed by 7 days off, plus 20 mg of dexamethasone [3] (Decadron) weekly. My doctor advised me to also take 81 mg of low-dose aspirin daily to ward off the formation of blood clots, a potential Revlimid side effect.
Hopefully, the high Revlimid dose plus the dex will nip myeloma in the bud before it gets out of control and causes new damage to my system.
Since I was off treatment since April 2011, this is a fresh start for me.
My induction chemotherapy five years ago consisted of Velcade [4](bortezomib) plus dex. Then I took Revlimid, without dex, for a year after my stem cell transplant. I started out at 15 mg, but the dose was lowered to 10 mg and eventually to 5 mg, because even at 10 mg, my white blood cell counts would fall below normal levels. I would have to wait an extra week before starting a new Revlimid treatment cycle for the blood counts to normalize again.
As you can imagine, I am concerned that this will happen again, especially because I’m receiving the high 25 mg Revlimid dose.
The pharmacy at the cancer center provided me with the Revlimid and dex within the hour after my appointment, and I had a review session with a pharmacist about the drugs.
I started my first treatment cycle the morning following my appointment. I swallowed the five little 4 mg pills of dex and the Revlimid pill with a nice breakfast of oatmeal. I was told that it’s best to take the dex in the morning, with food, in order to lessen the sleeplessness that can occur.
I decided to take the dex on Wednesday mornings, since Tuesday evening is my ‘choir night,’ and I am hoping to be as normal as possible for the practices.
The next two days were busy and a bit of a blur. I was sleepless the first night and didn’t really come down again for a few days.
By the time the weekend rolled around, I felt tired and fatigued, which I attributed to the Revlimid.
The dex made me hyper again in the second week. I took zopiclone to help me sleep, but since then I have obtained a different prescription for trazadone (Desyrel), which is a non-addictive anti-depressant that causes sleepiness. Both drugs gave me five or six hours of sleep. The trazadone seems to have a cheering effect on me, but also seemed to make me dizzy at times. I am hoping that I won’t have to take the sleeping pills more than two or three nights out of the week.
By the end of the week, I felt tired again.
It occurred to me that these drugs interact with each other like rip currents. Rip currents are strong, localized, and narrow currents of water that move directly away from the shore and cut through lines of breaking waves. You are supposed to swim parallel to the shore until you get out of the rip current and then head for shore. If you try to swim against it, you risk exhaustion and potentially drowning.
The Revlimid takes me in one direction, and the dex in another, and the combination sometimes exhausts me. I will have to make some adjustments to my usual lifestyle to stay afloat. I am fortunate to have a lifestyle that allows me to set my own pace and rest when I need to.
After taking the 20 mg dose of dex during the third week of the first treatment cycle, I realized that so far I have muddled along with no serious side effects. I think that I could carry on like this for as many cycles as it takes to quell the myeloma.
My main concern continues to be whether or not I can handle such a strong dose of Revlimid without becoming neutropenic.
During my first monthly check-up since starting treatment, at the end of October, I was really pleased to find that my serum free light chain ratio had already dropped by 60 percent and my M-spike had decreased by 20 percent. My white blood cell count, red blood cell count, platelets, and other markers are still in the normal ranges.
This allowed me to get the Revlimid/dex prescription for a second cycle, and I will have my next check-up in five weeks.
After receiving that encouraging news, I finished up the last week of the first treatment cycle with my weekly dex dose (as I mentioned earlier, no Revlimid in the last week). Everyone around me notices that I am very talkative after I take the dex. They also keep an eye on me in case of any problems with dizziness or light-headedness.
I’m hoping that I continue to respond well to these treatments so that I don’t have to deal with the edginess and hyper-activity caused by the dex and the tiredness by Revlimid for a long time.
Overall, I’m very grateful that so far I am managing to stay afloat and have not been swept away by a rip current.
───────────────── ♦ ─────────────────
The quotation for this month is from Ralph Waldo Emerson (1803 – 1882), an American essayist, lecturer, and poet, who said: “Sleep lingers all our lifetime about our eyes, as night hovers all day in the boughs of the fir-tree.”
Nancy Shamanna is a multiple myeloma patient and a columnist at The Myeloma Beacon. You can view a list of her columns here [5].
If you are interested in writing a regular column to be published by The Myeloma Beacon, please contact the Beacon team at .
Article printed from The Myeloma Beacon: https://myelomabeacon.org
URL to article: https://myelomabeacon.org/headline/2014/11/13/northern-lights-rip-currents/
URLs in this post:
[1] July : https://myelomabeacon.org/headline/2014/07/11/northern-lights-reaching-the-five-year-milestone/
[2] Revlimid: https://myelomabeacon.org/resources/2008/10/15/revlimid/
[3] dexamethasone: https://myelomabeacon.org/resources/2008/10/15/dexamethasone
[4] Velcade : https://myelomabeacon.org/resources/2008/10/15/velcade/
[5] here: https://myelomabeacon.org/author/nancy-shamanna/
Click here to print.
Copyright © The Beacon Foundation for Health. All rights reserved.