Adjusting to Revlimid

After a whole week on 10 mgs of Revlimid starting on the 11th of this month, I was sure we would be coasting on this treatment.  On the 15th, my oncology team pushed the drug dosage up to 20 mgs, and things were good for a few days...I even had enough energy to do yoga, and two physical therapy sessions and to top it off a trip to the beach.

Unfortunately, on Saturday morning I woke up with shooting pain in my chest, extending into my neck, back and throughout my left arm.  To add to it, I was having a ridiculously hard time breathing in deep -- and when I did, there was a substantial amount of pain.  Being a cancer patient, we have a higher risk of throwing  a blood clot, and these symptoms did not feel good, at all.  So off I went to the ER, and was admitted to the hospital to run tests, a VQ and a CT, which luckily resulted in positive results, my lungs were clear and there were no clots to be seen. 

The ER and hospital visit took three times as long as it should of, and many arm sticks, due to not being able to access a vein, at the end of this visit my family, my partner and I all decided it is time for a new port.  The new ports you can access and use for CT's, mine at this point you cannot, and my veins in my arms have taken quite a beating over the last six years.  If you saw me today, and didn't know I was a cancer patient, I'd swear you'd think I was using heroin.  It's not a good look.  We are hoping to schedule surgery once this treatment becomes more stable. 

The muscular pain around my chest continued, the painful deep breathing continues, and after being released, new side effects/symptoms started to arise.  So far these have been side effects I've experienced on the 20 mgs of Revlimid:

My side effects of Revlimid:

• Mouth Sores
• GI issues
• Muscular cramps/spasms (primarily in feet, legs, hands)
• Fingers/Jaw locking
• Neuropathy 
• Due to jaw spasms and locking, slurring of some words
• Thinning of Hair
• Dry Mouth
• Back Pain
• Feet/Legs falling asleep within minutes
• Full body tension/pain/aching after sitting for more than an hour, and just to note I am usually incredibly pain tolerant but my muscles are so incredibly tender, that just a soft touch sends my body into a level of pain I haven't experienced since SGN

After two days in the hospital, and these symptoms on top of it, especially the joints locking and spasming/cramping which is a side effect of Revlimid that some patients do get, I have spent the last two days in bed battling my muscles.  And I am one tired pup, that still has one more week of these drugs to finish up before the end of my cycle.  Although mentally I know this will be the roughest part of the treatment, figuring out all the kinks and letting my body adjust, I am feeling a bit drained and exhausted.

Last night it was decided that I would decrease the drug back down to 10 mgs in hopes that some of these side effects lessen.  This morning I'm grateful that my hands are no longer cramping and locking anymore; however my neuropathy is consistent in my toes, and my calves continue to spasm and cramp anytime I'm not moving.

I am, with everything I have trying to be patient.  It has been a long time since I've been on a real drug, and a part of me almost forgot what it was like.  This will take some time and adjustments with medications. I'm hoping staying on the lower dose will be more of a relief -- time will tell.  

Here's to the lower dose being the key to a hopefully, very boring week,
and of course, a sweet New Year.

Sending Love and Light,

B.