Alison had the chest CT tests done on Monday (chest CT angiogram and spiral CT). The report from Kirk is that whatever the inflammation in her lungs that was going on a month and more ago now seems to be resolved. Kirk reports that her endurance is better, she is less winded, but still taking lots of naps. She'll have another follow-up with the pulmonary specialist at the end of the week, hopefully to put the whole episode of shortness of breath/lung inflammation into some perspective as to what and why this happened (best guess at the moment is that it was a nasty side effect of the last chemo drug, Temodar).
So, with her lungs being "cleared" from the medical point of view, she will have her first treatment with Avastin tomorrow. It's an IV infusion, and we hear that most folks tolerate the drug well. Here is a link (admittedly from the manufacturer) that explains how this new type of drug works (you can copy and paste into your browser if you are curious): http://www.avastin.com/avastin/patient/gbm/about/thought/index.m
Here's wishing her the best tomorrow, that the infusion goes smoothly, and most importantly - that it WORKS!
Wednesday, March 31, 2010
Saturday, March 27, 2010
Sorting out her shortness of breath
I got the update from Kirk about the medical visits this week, besides UCSF (see prior post). Alison met with her new medical oncologist yesterday(he directs the chemo) and he has coordinated with the pulmonary (lung) specialist to make a plan. We hear very positive reports in her confidence in this oncologist.
On Monday (3/29), Alison will have CT scans to look at lung status and especially blood vessel status in the lungs (spiral CT and CT angiogram). The idea, I believe, is to see if additional tests need to be done if there is still inflammation in the lungs, and to see if there is any clot in the blood vessels of the lung that could account for symptoms such as the shortness of breath and overall difficulties with poor endurance, fatigue and faster than normal heart rate that she has been having. I'm not clear what findings would be a "deal-breaker" before starting the Avastin, but the medical oncologists want a better handle on her lung status. Avastin is a relatively recent anti-cancer drug, and works specifically on blocking blood vessels that feed a tumor, so the issue about clots and regenerating blood vessels is pertinent. You know that her hospitalization at the end of treatment last time involved this mysterious involvement of lungs and inflammation, and nothing definitive was found at that time.
I know Alison is anxious to get going with treatment, so let's cross our fingers that the tests let her move forward with her treatment.
On Monday (3/29), Alison will have CT scans to look at lung status and especially blood vessel status in the lungs (spiral CT and CT angiogram). The idea, I believe, is to see if additional tests need to be done if there is still inflammation in the lungs, and to see if there is any clot in the blood vessels of the lung that could account for symptoms such as the shortness of breath and overall difficulties with poor endurance, fatigue and faster than normal heart rate that she has been having. I'm not clear what findings would be a "deal-breaker" before starting the Avastin, but the medical oncologists want a better handle on her lung status. Avastin is a relatively recent anti-cancer drug, and works specifically on blocking blood vessels that feed a tumor, so the issue about clots and regenerating blood vessels is pertinent. You know that her hospitalization at the end of treatment last time involved this mysterious involvement of lungs and inflammation, and nothing definitive was found at that time.
I know Alison is anxious to get going with treatment, so let's cross our fingers that the tests let her move forward with her treatment.
Wednesday, March 24, 2010
Update - March 24, 2010
Team Alison:
Today Alison had her follow-up appointments (MRI, neuro-oncologist). Brain scan shows that 1 area of tumor appears to have died, 1 area appears to show no growth but 1 area is slightly increased. Future plans include some new chemo (Avastin) pending approval from her pulmonary team (resolution of her February lung issues that had her hospitalized for 11 days). She is every optomistic and she is ready to face tomorrow's challenges.
We all appreciate that you continue sending her your loving thoughts and acts of loving kindness.
cj, Jon, and Deborah
Today Alison had her follow-up appointments (MRI, neuro-oncologist). Brain scan shows that 1 area of tumor appears to have died, 1 area appears to show no growth but 1 area is slightly increased. Future plans include some new chemo (Avastin) pending approval from her pulmonary team (resolution of her February lung issues that had her hospitalized for 11 days). She is every optomistic and she is ready to face tomorrow's challenges.
We all appreciate that you continue sending her your loving thoughts and acts of loving kindness.
cj, Jon, and Deborah
Tuesday, March 16, 2010
Not much to say, but...
Been a while since my last post and, unfortunately, that's largely because I've sort of been under the weather again. Don't mean to whine, but just can't seem to stay healthy and don't know why. Nothing serious, but running low-grade fevers and my energy level is pretty low. Back to see my doctor today and had labs done (results back tomorrow or the next day). Nothing obvious going on that the doctor could see; hopefully the lab results will tell us something conclusive (and nothing serious), although, historically, so far we haven't have a lot of luck with getting answers to the medical questions.
On a more upbeat note, looking forward to a visit from my dad and his wife this weekend, which means we'll also be seeing other family members -- brother and sister-in-law and, hopefully, sister and brother-in-law. Missing my daughter, whose been kept busy with studying for mid-terms and writing term papers and all that fun stuff. At least she's got spring break coming next week so I'll get to spend some time with her soon. Had a nice visit from one of the nurses I worked with at the ICN, Cindy Hunt, who was kind enough to bring a care package of some yummy and healthy food, plus spent a little time visiting with me and catching me up on events at work.
So that's all I've got for now. I'll try to do better about keeping you guys updated more regularly, or getting one of my siblings or daughter to help me out when I fall down on the job.
Love to all, /ab
On a more upbeat note, looking forward to a visit from my dad and his wife this weekend, which means we'll also be seeing other family members -- brother and sister-in-law and, hopefully, sister and brother-in-law. Missing my daughter, whose been kept busy with studying for mid-terms and writing term papers and all that fun stuff. At least she's got spring break coming next week so I'll get to spend some time with her soon. Had a nice visit from one of the nurses I worked with at the ICN, Cindy Hunt, who was kind enough to bring a care package of some yummy and healthy food, plus spent a little time visiting with me and catching me up on events at work.
So that's all I've got for now. I'll try to do better about keeping you guys updated more regularly, or getting one of my siblings or daughter to help me out when I fall down on the job.
Love to all, /ab
Sunday, March 7, 2010
Stronger every day
Have had a good couple of days. Can now make it up the full flight of stairs without stopping and without getting overly winded. Yay, hooray.
I've tapered my decadron dose again, so I'm now taking one mg three times a day. Pretty big change from my original 16 mg/day. I'm hoping I'll start to see a real difference in my appetite over the next weeks. What a relief that will be.
I had a really nice visit today from my aunt Barbara, my mom's youngest sister. (Shhhh...She was always my "favorite aunt," and although we haven't seen much of one another in many years, or even had much contact, she's an important person in my life.) She's driving down to Southern California from Olympia, Washington, and made a side trip to visit me. Barbara, Kirk, and I did some hanging out at the house and then walked for a bit in Tilden Park, where I continued to show my improved physical endurance and walked for probably 2/3 of a mile. (So I'm feeling pretty good about that.)
Watched the Oscars, talked briefly to Deborah for the first time in almost a week (she's been at a choral convention singing her little heart out), and am waiting to hear from Dani, who's off singing HER little heart out at her regular Sunday night gig.
So that's all there is to report for now. I'm liking this trend of getting stronger, feeling better...
Love to you all,
/ab
I've tapered my decadron dose again, so I'm now taking one mg three times a day. Pretty big change from my original 16 mg/day. I'm hoping I'll start to see a real difference in my appetite over the next weeks. What a relief that will be.
I had a really nice visit today from my aunt Barbara, my mom's youngest sister. (Shhhh...She was always my "favorite aunt," and although we haven't seen much of one another in many years, or even had much contact, she's an important person in my life.) She's driving down to Southern California from Olympia, Washington, and made a side trip to visit me. Barbara, Kirk, and I did some hanging out at the house and then walked for a bit in Tilden Park, where I continued to show my improved physical endurance and walked for probably 2/3 of a mile. (So I'm feeling pretty good about that.)
Watched the Oscars, talked briefly to Deborah for the first time in almost a week (she's been at a choral convention singing her little heart out), and am waiting to hear from Dani, who's off singing HER little heart out at her regular Sunday night gig.
So that's all there is to report for now. I'm liking this trend of getting stronger, feeling better...
Love to you all,
/ab
Tuesday, March 2, 2010
Lots of news
Busy, busy morning for me and Kirk. Up early so that we could got get my CT scan of my upper lungs 7:45 am. Then a 10:00 echocardiogram. Then the 11:30 appointment with Dr. Kury, the pulmonologist to review results of my CT tests. Exhausting morning, but good to get all of that out of the way.
Preliminary report: all good news. The echocardiogram showed a small amount of pericardial effusion (fluid around the heart) but nothing that seemed significant. My primary care doc will get more complete results and call me soon. The CT scan of my lungs still showed something there, but she thought there was improvement. One glitch was that prior CTs were high resolution (1mm slices) and this was 5mm resolution, so Dr. Kury was happy that the results showed improvement, but said a 5mm vs. 1mm would look better ... but still, improvement.
So yay, hooray! The current plan is to continue doing nothing in particular in terms of doctors appointments and treatments until after my next MRI at UCSF. I've got nothing obvious to worry me for the next few weeks (other than all the legal / financial / personal business I've still not attended to!) and I can start making plans for doing some fun and relaxing stuff as my stamina allows. I'll definitely be needing a little more physical conditioning before I take on any challenges (i.e., road trips and overnight travel), but given how I felt after today's afternoon nap, I think I'll be able to start moving toward having some fun in the very near future.
So ever onward. Excited to maybe, finally, start feeling like a person and not a patient. Keep your fingers crossed for me, eh? (that's my Canadian inflection from the Olympics!)
Big hugs; lots of love to all my many supporters,
/ab
Preliminary report: all good news. The echocardiogram showed a small amount of pericardial effusion (fluid around the heart) but nothing that seemed significant. My primary care doc will get more complete results and call me soon. The CT scan of my lungs still showed something there, but she thought there was improvement. One glitch was that prior CTs were high resolution (1mm slices) and this was 5mm resolution, so Dr. Kury was happy that the results showed improvement, but said a 5mm vs. 1mm would look better ... but still, improvement.
So yay, hooray! The current plan is to continue doing nothing in particular in terms of doctors appointments and treatments until after my next MRI at UCSF. I've got nothing obvious to worry me for the next few weeks (other than all the legal / financial / personal business I've still not attended to!) and I can start making plans for doing some fun and relaxing stuff as my stamina allows. I'll definitely be needing a little more physical conditioning before I take on any challenges (i.e., road trips and overnight travel), but given how I felt after today's afternoon nap, I think I'll be able to start moving toward having some fun in the very near future.
So ever onward. Excited to maybe, finally, start feeling like a person and not a patient. Keep your fingers crossed for me, eh? (that's my Canadian inflection from the Olympics!)
Big hugs; lots of love to all my many supporters,
/ab
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