Thursday, October 13, 2011

Back on a Chemo Treatment Plan

The cancer marker number continues to increase at an increasing rate.  Rebecca started taking Revlimid a couple of months ago.  The first cycle was 10 mg/day for 21 days on and 7 off.  The doze was increased to 15 mg/day the second cycle.  Our oncologist wanted to start out with a low doze to see what the side effects would be like.  She will start the next cycle tomorrow with 20 mg/day of the Revlimid along with 20 mg of Dex on days 1, 8, & 15.

The first two cycles of Revlimid doesn’t appear to be doing much from looking at the Lambda free light chain protein trends.  Hopefully adding Dex will help.  I have added the rate the Lambda number is changing per day to the one graph.  Divide this number by 100 to get the correct unit of measure of mg/L/day.  The rate of increase has decreased per the last test so maybe the Revlimid is doing something.
The pain from the peripheral neuropathy seems to be getting a worse.  She does get a little relief by applying some Neuragen.  She is still taking the oxycotin and oxycodene.  I wonder what her tolerance to this is since it doesn’t seem to give her much pain relief.

Our venture to the new pain clinic didn’t go well.  Rebecca has a difficult time waiting a long time sitting in a wheel chair.  After waiting about two hours for the doctor we left.  They called us later and we went back the next day.  Only waited 15 minutes to see the doctor.  That went pretty well.  The plan was to evaluate having a pump installed to inject the pain medicine directly into the spine.  However, they scheduled us to go to several classes.  When we went to the first class two weeks later we didn’t like this approach.  It felt like it was a behavior recovery meeting.  We left that class early on.

Rebecca has been doing a good job of managing the dysfunctional digestive system.  She feels the domperidone is helping to prevent an other ileus.  She has had a few times where she thought she was going to have an ileus.  She would tell me to get things ready for the trip to the ER room.  But she got it to pass.  We have not been back to the hospital for 4 months now.  That is pretty good since the last ileus was only 6 weeks after the previous one.  An ileus is very painful and discomforting.  She errors on the side of keeping the stools too loose in an effort to prevent an ileus.  She also has incontinence when she sleeps so this puts a big clean up effort on her and I.  She is embarrassed about it and doesn’t let me help as much as she should.

Rebecca’s mobility continues to be very limited.  She seems to be having more pain when she tries to walk.  That is why I wonder if she is becoming more tolerant to the pain medication or are the fractured vertebrae re-fracturing.

We have an appointment with the neurologist next week.  She is continuing to take the seizure medicine.  I think she continues to have small seizures.  She continues to have some small jerks in her sleep.  The doctors thinks these are just normal muscle spasms.  The other tell tale sign is in the past the seizures seem to affect her memory and her personality.   There seems to be a little bit of this going on.  Her driver’s license was due to expire and I said she needed to get it renewed for the purpose of a picture ID.  She didn’t think they would renew it but we went anyhow and they did renew it.  She didn’t think they would renew it because of the seizures.  I had forgot about that.  Evidently the doctor forgot to send in the restriction.


  1. hi jerry, i am a fellow mm caregiver to my husband hugh, who was diagnosed in 2009. i just wanted to say i am so sorry for all that rebecca and you are going through. i hope so much that the neurologist appt. next week will bring some answers, as well as new comfort measures that will help rebecca, both with her mobility and her pain. thank you for posting and letting us know how you both are doing. wishing all the best, karen

  2. Karen, thank you for the response. It has been a difficult time for my wife.

  3. you are so welcome, jerry. and i'm sure it's been so very hard for you, as well. we watch what happens to those we love so dearly, and often feel so helpless - to make things better, to find answers and to keep ourselves strong and brave. it can be such a torturous road to hoe. i hope you are taking good care of yourself, and that your blog helps you as you navigate this very rough patch. keep writing! your care and devotion to rebecca is an inspiration to all us other caregivers - and we all learn from each other's experiences, both good and not so much, eh? i'm thinking of you both, karen

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  5. Thank you for sharing this post on neuropathic pain. Good job