Sunday, December 13, 2009

Suki-Yaki Doctor Talkie - by George!

Today was another cloudy and chilly day in San Francisco, but the rain stopped and the sun came out in bits and patches.  Chilly with patches of sun, but not real warm sun, kind of describes the day in all it's particulars.  Our blog buddy, Becky L, warned us early on after the myeloma diagnosis to hang on because this would be an up and down ride.  Well, Becky, you were right.

Sue was napping this afternoon and I was bored from being cooped up in a tiny hospital room while the City was doing its Sunday thing, so I decided to take a walk.  I walked west on Irving to 9th Avenue and encountered the Thai Noodle Cafe.  There's nothing like a big bowl of steaming hot Thai suki-yaki soup (not to be confused with Japanese sukiyaki).  Matched with hot sake wine and soft Thai music, it'll take the chill off any day. It'll melt your stress and put you in a meditative state of mind.  Or is that a medicated state of mind?  Oh, never mind.  Moving on.

I bought a Starbucks cranberry bliss bar on the walk back to appease Sue and got back to the hospital just in time to hear the latest from the on-duty doctors.  Sue's midnight MRI Friday night revealed inflamation in the nerve roots (the area where nerves leave the spinal cord) in her lower back (regions S1, S2 and S3).  This inflamation extends out on both sides of her sacrum, and is the probable cause of her back pain and the probable cause of her muscle weakness in her legs and the probable cause of the increase in her neuropathy.  The good news today was that there is no evidence in the MRI of a fractured bone and it does not appear to the doctors that Sue's symptons are resulting from a tumor or myeloma cell mass pressing on Sue's spinal cord.

There are a host of possible causes of the inflamation of the nerve roots, and some of those are not good.  Well, they're all not good but some are worse than others.  Some of the possible causes which have been discussed are: (a) the nerve damage is resultant from the Velcade (that's the same awful chemo stuff that caused Sue's neuropathy, but which also killed a bunch of the myeloma cells and stopped the original back pain); (b) a viral injury, possibly related to the shingles which attacked Sue a couple of times during her chemo treatments; (c) possibly the myeloma is acting up again in that localized area; (d) some of the lesions which occurred in Sue's pelvis and sacrum prior to chemotherapy treatment could be implicated.  The doctor used some words I wrote down but couldn't understand or spell well enough to google.  I thought he said something like "gimbray syndrom" but he dismissed it immediately as just talking out loud, so I left it hanging in my note book like a dangling participle.

The other good news is that, for now, the extreme pain Sue was experiencing is being controlled, they are treating the inflamation with steroids and that appears to be working, and they are continuing to investigate to find the cause of this new problem.  The bad news is that Sue's not going home tomorrow, but I probably will.  The other other bad news is that this guest chair "bed" they let me sleep on in Sue's room is killing my back.  I'm going to have to apply to get some of Sue's pain medication if I have to sleep on this goofy thing too many more nights.  Sheesh.  Grand Hyatt king one night and couch rat the next.  Like Becky said, up and down.

The doctors here have not ruled out radiation therapy.  The plan is to put Sue through more tests tomorrow, including a PET scan (that's Positron Emission Tomography).  Dr. Wolf is going to be around and back on the case tomorrow.  We like Dr. Wolf.  He's as comforting as a sheep's wool sweater on a chilly San Francisco day.  Hmm.  Maybe alpaca?


Jerry said...

I would be very cautious about the radiation therapy. My wife started chemo with Velcade last March and had about 10 doses of radiation therapy to the lower back in April for severe pain. She also had an epidural. The pain did subside some but she has been on pain medication ever since. Switching between oxicodone and morphine and back to oxicodone now. When I looked back at the blood tests and urine at the time of the radiation it appears her cancer numbers were down so I don't know what the radiation would have done other than it did burn her skin. I wonder what it did to her internals. She has had digestive problems and pain ever since.
You might ask about targeted tomography radiation. The radiation is guided by computer tomography and results in less radiation to your body parts that don't need radiation.
The reason our doctor prescribe radiation was because other patients have had good results with back pain relief. However, my thinking is that the pain has to be due to active myeloma cells in the area of the pain. If your wife's pain is due to nerve damage or inflammation I would ask them what the radiation is going to do.
Sorry your wife is having this lower back pain. It can be very debilitating. Keep up with the side effects of the pain medication. The pain medication can slow or stop the action of the gut and constipation can be a problem.

Pat and Pattie Killingsworth said...

The PET scan is a good idea! I just wrote an several articles about using PET scans for multiple myeloma patients on my site: www.MultipleMyelomaBlog.Com. Good luck, Sue! Pat

Little Spouse in the Old House said...

My prayers are continuing for you! Love, Janice

Four Winds said...

I agree with the "be careful about radiation" advice. I know of two folks who have had additional radiation for 'pain' with further complications in their original diagnosis. Targeted treatments may be helpful, but the big question to be answered by the docs must always be: WHY are you suggesting we do this? WHAT results will this bring, if you know?

brent said...

Hi George -- when you heard "gimbray syndrom" they were probably talking about Guillain-Barré Syndrome. It can be pretty devastating, with no cure, so good thing Sue doesn't have it.

For the radiation treatment they are probably going to use one of those cyber knife systems or similar ( They are pretty cool.

- brent

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