Becca has been getting worse since October 10, when she had another successful benefit for LMS at Julia Morgan Theater. She made it to Santa Monica to get the Yondelis (mentioned in her previous post) but she never got it because some enzyme in her liver wouldn't cooperate, so she had to return home the next day. The enzyme is still too high to go back down so she's tweaking the pain medication to see if that helps. She is also getting hydrated for a couple days at Alta Bates Cancer Center. Appetite is not great, and constipation is a constant problem. I wish I had better news to report.
There was a really good article that chronicles Becca's plight and her caring cancer community in the East Bay Monthly, just out on Tuesday. It includes good photos too. Check it out here:http://www.themonthly.com/feature1011.html
...and think good thoughts. She needs them. We need them.
Love,
Steve
Thursday, October 28, 2010
Friday, October 1, 2010
Update
Life is not easy, no one every said it would be. These last weeks I have felt that the tumors were growing, I could feel shifts and changes in my back and pelvis. Given these feelings, I pushed my scan date up two weeks. The scan showed that the tumors have grown, argh. As you can imagine this was VERY depressing news as I was hoping to get some relief on Votrient.
My plan now is to do what they call a compasstionate care clinical trial (a drug called Yondelis) in Santa Monica which I will start in just under 3 weeks, not soon enough in my mind but a "flush out" period is need before I start the new drug.
I am trying to keep my head up and look on the bright side, which isn't easy. The "bright" side is the are no new tumors, nothing in vital organs other than the right kidney, and one only needs one kidney, right?
This is not fun.
Becca
My plan now is to do what they call a compasstionate care clinical trial (a drug called Yondelis) in Santa Monica which I will start in just under 3 weeks, not soon enough in my mind but a "flush out" period is need before I start the new drug.
I am trying to keep my head up and look on the bright side, which isn't easy. The "bright" side is the are no new tumors, nothing in vital organs other than the right kidney, and one only needs one kidney, right?
This is not fun.
Becca
Thursday, September 2, 2010
not feeling great
despite the "good" news I am emotionally very tenuous, the other word for this is depressed. I ve been closing in and been spending lots of time alone with the exception of a few folks. I am having a hard time staying in touch. Thank you everyone for continuing to reach out even when I don't respond.
I just got an email from Dr. Sabbatini saying that the response I got on the Votrient is typical, and he thinks it's good news. That makes me a bit happier.
one of the contributing factors to my depression is I am not fully funtional; my back is really tight where the tumor is and my left leg is slighlty numb....arghh. Okay, enough.
Some good news is we're having the second annual LMS Benifit on October 10th at 7. The Performer is Don Reed, he's fantastic! tickets will be available soon.
Becca
I just got an email from Dr. Sabbatini saying that the response I got on the Votrient is typical, and he thinks it's good news. That makes me a bit happier.
one of the contributing factors to my depression is I am not fully funtional; my back is really tight where the tumor is and my left leg is slighlty numb....arghh. Okay, enough.
Some good news is we're having the second annual LMS Benifit on October 10th at 7. The Performer is Don Reed, he's fantastic! tickets will be available soon.
Becca
Saturday, August 28, 2010
Stability
Apologies for being a bad uninvited and unauthorized guest blogger...
The news is good. After two weeks of radiation and about four weeks of Votrient, scan showed the tumor in pelvis area is smaller, the one in chest is stable, and there are tiny (1 mm) increases in nodules in right kidney and one lung lobe since last scan in early July. More encouraging is that the pain has been on the wane for two weeks. The pain meds have been dropping out and the woman looks better, too. The insurance appeal even went through.
All told, a pretty nice ride on the roller coaster.
Steve
The news is good. After two weeks of radiation and about four weeks of Votrient, scan showed the tumor in pelvis area is smaller, the one in chest is stable, and there are tiny (1 mm) increases in nodules in right kidney and one lung lobe since last scan in early July. More encouraging is that the pain has been on the wane for two weeks. The pain meds have been dropping out and the woman looks better, too. The insurance appeal even went through.
All told, a pretty nice ride on the roller coaster.
Steve
Friday, August 6, 2010
Good News, Bad News, but on balance, Better News
Becca received a report from an MRI on her pelvis this week. The good news is that her larger tumors, which had not responded to her most recent chemotherapy (AIM), have substantially shrunk by 2, 3 and 6 centimeters, respectively, since her last scan on July 6. They have gone from big and hard to smaller and softer. Speculation centers on the possibility of the Votrient pills she has been taking for about 10 days working super well, but your guess is as good as the next doctor’s.
Secondly, her lungs are clear so that one appears to be status quo.
In the bad news department, there are two newly identified small tumors. There are two areas of concern:
Most concern is the soft tissue area growing out of her sacrum into tissues parallel to it and trapping the nerve root area. This is what has been causing her really, really bad pain. Becca continues to take methadone, which is sort of the “backbone for pain”; Neurontin for nerve pain; and Dilaudid for extra pain as needed.
The second area of concern is a small tumor nearing the spinal canal, and, of course, you don’t want it to let anything into that canal (spinal cord = bad).
Doctor Tracy described the new tumors as “not an emergency” but better to radiate sooner than later. So presto, Becca begins radiation at 8 am sharp on Monday morning, which is as soon as possible. This will be standard external beam radiation, which is not considered dangerous, as it works around the nerve.
Abby and I will be off to Berkeley family camp tomorrow morning, so I wanted to get this off before I go offline.
Best,
Steve
Secondly, her lungs are clear so that one appears to be status quo.
In the bad news department, there are two newly identified small tumors. There are two areas of concern:
Most concern is the soft tissue area growing out of her sacrum into tissues parallel to it and trapping the nerve root area. This is what has been causing her really, really bad pain. Becca continues to take methadone, which is sort of the “backbone for pain”; Neurontin for nerve pain; and Dilaudid for extra pain as needed.
The second area of concern is a small tumor nearing the spinal canal, and, of course, you don’t want it to let anything into that canal (spinal cord = bad).
Doctor Tracy described the new tumors as “not an emergency” but better to radiate sooner than later. So presto, Becca begins radiation at 8 am sharp on Monday morning, which is as soon as possible. This will be standard external beam radiation, which is not considered dangerous, as it works around the nerve.
Abby and I will be off to Berkeley family camp tomorrow morning, so I wanted to get this off before I go offline.
Best,
Steve
Wednesday, July 28, 2010
Big Pain, No Gain
This is an unauthorized blog post, but an overdue one nevertheless. It's been a painful couple of weeks for Becca. She started taking the Votrient pills (mentioned in her last post) this week, but it will be a good six to eight weeks to see whether they are doing the trick. Meanwhile the meter is running as the #$%&!@% insurance company denled coverage. We're appealing. Another painful process.
The physical pain is sciatica, an intense deferred pain centered in her right upper thigh area, not near the abdominal tumors. Two theories are a blood clot or bone metasasis. Tomorrow Becca gets an X-ray and a sonogram to see if anything shows up. Then there's the pain medication, which has been ramped up from Vicodin to Dialudid to, as of today, Dialudid and Methadone. Serious stuff, and she is not even trying to kick heroin. That's on top of the Adavan for anxiety, nausea and muscles, and God knows what else.
My mom used to take Adavan during her sunset daze. She also described painful people as "pills" during her glory days. I used to think that was a funny, jaded expression. Now I'm not so sure.
Steve
The physical pain is sciatica, an intense deferred pain centered in her right upper thigh area, not near the abdominal tumors. Two theories are a blood clot or bone metasasis. Tomorrow Becca gets an X-ray and a sonogram to see if anything shows up. Then there's the pain medication, which has been ramped up from Vicodin to Dialudid to, as of today, Dialudid and Methadone. Serious stuff, and she is not even trying to kick heroin. That's on top of the Adavan for anxiety, nausea and muscles, and God knows what else.
My mom used to take Adavan during her sunset daze. She also described painful people as "pills" during her glory days. I used to think that was a funny, jaded expression. Now I'm not so sure.
Steve
Wednesday, July 14, 2010
unexpected news
Last Thursday I got disappointing news that the chemo therapy protocol that I am on is not working. The tumors are growing in both my pelvis and back. This is contrary to the encouraging news from few weeks ago that the tumor on my back was shrinking. After a few days of shock and despair, I contacted Dr. Sabbatini, the sarcoma specialist in MSKCC in NYC and he heavily suggested a drug call Votrient. Votrient is a newly approved FDA drug that is used for renal cancer and is in phase III studies for sarcoma. It's not a chemotherapy but a tyosine kinase inhibitor which blocks proteins, I don't understand it fully but I know the drug works very differently than chemotherapy. I may have some hoops to jump through to get Votrient but I am pretty certain I can get it and I am doing everything I can to expedite the process.
I am still working on keeping my weight up which has become harder because my appetite isn't as hardy as it was. I frequently have abdominal pain which is a real downer for eating and to make things more complicated, I am super finicky about what I want to eat; one minute its roast beef the next cinnamon bread.
I hope next time I post I will have better news.
Becca
I am still working on keeping my weight up which has become harder because my appetite isn't as hardy as it was. I frequently have abdominal pain which is a real downer for eating and to make things more complicated, I am super finicky about what I want to eat; one minute its roast beef the next cinnamon bread.
I hope next time I post I will have better news.
Becca
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