I feel fine, and been monitoring for anything unusual. Last week i went in to talk to the social worker and happened to have my weight and blood pressure checked- I was 121lbs and my BP was 128/92! My blood pressure had gone up 20 points on both parts! I didn't believe the nurse's reading, and so I ran around to varying offices in search of an automated machine. After struggling for 5 minutes just to put the velcro cuff on my arm (I could have done it manually twice as fast) I got a new reading- 120/82. Hmm.. that's much more normal but still 2x as high. I guess Avastin does indeed cause your pressure to go up.
Other than my now normal blood pressure, I have no other issues. I guess if you don't count the fact that I only have 2 or 3 pairs of pants that really fit. Darn! I guess now I have an excuse to go shopping ;)
I haven't yet met with Dr. Rivkin to discuss the Avastin treatments, or to even officially go over the CT scan results. I'm going to try to go in tomorrow, but if not I can always see him next week. This weekend kicks off festival season :)
May 25, 2011
May 13, 2011
1st Avastin treatment
*** I posted two times today so read the post below first.***
I'm actually sitting in the waiting room for my first treatment. It's sunny and I'm frustrated because I was just starting my garden when I had to go here. Now I've been waiting for 1/2 hour and then I'm expecting treatment to be over an hour. I'm feeling pretty frustrated right now
I'm listening to some of the patients talking about their cancer experience and it's pretty sad. One guy has had chemo for 13 years. I'm not sure what cancer he has, but it keeps coming back. He is having a really hard time talking and is speaking really slow. He explained that he has a really hard time stringing words together and could even explain where he lived. What kind of quality of life can you have if you cant communicate or think straight? This is just great example of why I'm not doing the traditional chemotherapy ever again...
...I just started the infusion and she answered a lot of questions I'm been thinking about for awhile. But first I must say that Swedish offers a much better lunch than SCCA! They have a veggie sandwich and healthy food such as fruit. Such a change from the crap I used to eat- cheesitz and Oreos. They actually recognize the importance of good nutrition when you are battling cancer.
I asked the nurse what side effects she encountered with patients on Avastin. She said a lot of patients are on Avastin and it's pretty well tolerated. Most commonly she sees a raise in blood pressure and fatigue. My blood pressure is 106/64 (normal is around 120/80), so I don't think I don't think that will be an issue. Hopefully now I won't feel like I'm about to faint all the time. Because the drug prevents blood vessels from forming, they check your platelet count before each infusion to check the body's ability to clot. Therefore, there is the potential for bleeding, and so some patients may have occasional blood noses. She said she has only had two patients have the most serious side effect-abdominal bleeding. These are two out of hundreds on Avastin, and I'm guessing that they weren't that healthy to begin with. I'm not worried about anything right now except the fatigue, although that has been much much better
I have to have the chemo every two weeks until infinity. Actually I have no idea when I have to stop because it is only maintenance therapy. I guess I'll just do it as long as I can tolerate it. The infusion is 90 min today, and then 60 min next time, and then 30 min every time after that. It seems quick- it's Friday though and I definitely need to reschedule my next one earlier in the week.
I also learned Dr. Rivkin is in his 70's and will probably never retire. Apparently, at the time I set up my first appointment he was trying to cut down his patient load- making it surprising that he took me on. I'm guessing it's because my cancer is a little rarer, but mostly I'm sure it's because of my age. He is almost enthusiastic about my case which is a really really good.
He doesn't do surgery- he refers his patients to one of the ovarian cancer surgery specialists. I didn't know there was a specialist for my cancer, but I love the idea. Hopefully this one won't take out any extra body parts.
I'm actually sitting in the waiting room for my first treatment. It's sunny and I'm frustrated because I was just starting my garden when I had to go here. Now I've been waiting for 1/2 hour and then I'm expecting treatment to be over an hour. I'm feeling pretty frustrated right now
I'm listening to some of the patients talking about their cancer experience and it's pretty sad. One guy has had chemo for 13 years. I'm not sure what cancer he has, but it keeps coming back. He is having a really hard time talking and is speaking really slow. He explained that he has a really hard time stringing words together and could even explain where he lived. What kind of quality of life can you have if you cant communicate or think straight? This is just great example of why I'm not doing the traditional chemotherapy ever again...
...I just started the infusion and she answered a lot of questions I'm been thinking about for awhile. But first I must say that Swedish offers a much better lunch than SCCA! They have a veggie sandwich and healthy food such as fruit. Such a change from the crap I used to eat- cheesitz and Oreos. They actually recognize the importance of good nutrition when you are battling cancer.
I asked the nurse what side effects she encountered with patients on Avastin. She said a lot of patients are on Avastin and it's pretty well tolerated. Most commonly she sees a raise in blood pressure and fatigue. My blood pressure is 106/64 (normal is around 120/80), so I don't think I don't think that will be an issue. Hopefully now I won't feel like I'm about to faint all the time. Because the drug prevents blood vessels from forming, they check your platelet count before each infusion to check the body's ability to clot. Therefore, there is the potential for bleeding, and so some patients may have occasional blood noses. She said she has only had two patients have the most serious side effect-abdominal bleeding. These are two out of hundreds on Avastin, and I'm guessing that they weren't that healthy to begin with. I'm not worried about anything right now except the fatigue, although that has been much much better
I have to have the chemo every two weeks until infinity. Actually I have no idea when I have to stop because it is only maintenance therapy. I guess I'll just do it as long as I can tolerate it. The infusion is 90 min today, and then 60 min next time, and then 30 min every time after that. It seems quick- it's Friday though and I definitely need to reschedule my next one earlier in the week.
I also learned Dr. Rivkin is in his 70's and will probably never retire. Apparently, at the time I set up my first appointment he was trying to cut down his patient load- making it surprising that he took me on. I'm guessing it's because my cancer is a little rarer, but mostly I'm sure it's because of my age. He is almost enthusiastic about my case which is a really really good.
He doesn't do surgery- he refers his patients to one of the ovarian cancer surgery specialists. I didn't know there was a specialist for my cancer, but I love the idea. Hopefully this one won't take out any extra body parts.
Scans
I spent my day off yesterday in the clinic- getting scanned. First I had a CT scan, which includes of course drinking a quart of chalky berry-flavored contrast. It's not really that bad, but I have an hour to drink it. I finished it in 2 minutes and just sat there bored. The scan itself wasn't bad, I've done them so many times. I won't know the results until Monday, or when I schedule my next appointment. I'm not really worried though- I just had a PET and that was fine
Scan number two was a mammogram. This was new to me. First of all, everyone kept reminding me of the question "why are you here?" I'm under 30, with a weird cancer that isn't known to be linked to breast cancer. Plus, since Basic Health won't cover it, it would cost $700. I just figured, why not? it's on Swedish's bill anyways. Turns out my nurse was an ovarian cancer survivor too. She told me that she asked to scan me after reading my chart. We chatted about my experience and she encouraged me to go to one of the support groups, as well as an organization that promotes physical activity by planning hiking trips and offering classes in swimming, yoga, etc. She joined and now races dragon boats. Pretty cool. She also said that she still goes to the support groups and that there are a few younger women, and some others with clear cell. However, she said she always felt a little bad because she was a 8 year survivor and some of the women in the group had active cancer and were late stage 4. The survivors guilt often got to her but she assured me that it was still worth attending the group. In any case, I'm motivated to join a group.
The boob smasher machine itself was weird. It didn't hurt despite the fact that I had to put my boob between two plastic scanners. I had tO put my arm up while the nurse positioned me for proper placement. It was fast and I only had to wait for ten minutes before the doctor called me in to review the scan. As expected it was fine. However when I asked where the cyst was that I've had forever was located, she said that she couldn't see it. Then she said that this was an example of easy it is to miss early breast cancer, even with the most detailed scan
I wrote this a week ago so I did call for another appointment to get my results. The nurse said the CT scan was fine, which I knew was the case. And, I finally got approved for Avastin, and so I start next week!
Scan number two was a mammogram. This was new to me. First of all, everyone kept reminding me of the question "why are you here?" I'm under 30, with a weird cancer that isn't known to be linked to breast cancer. Plus, since Basic Health won't cover it, it would cost $700. I just figured, why not? it's on Swedish's bill anyways. Turns out my nurse was an ovarian cancer survivor too. She told me that she asked to scan me after reading my chart. We chatted about my experience and she encouraged me to go to one of the support groups, as well as an organization that promotes physical activity by planning hiking trips and offering classes in swimming, yoga, etc. She joined and now races dragon boats. Pretty cool. She also said that she still goes to the support groups and that there are a few younger women, and some others with clear cell. However, she said she always felt a little bad because she was a 8 year survivor and some of the women in the group had active cancer and were late stage 4. The survivors guilt often got to her but she assured me that it was still worth attending the group. In any case, I'm motivated to join a group.
The boob smasher machine itself was weird. It didn't hurt despite the fact that I had to put my boob between two plastic scanners. I had tO put my arm up while the nurse positioned me for proper placement. It was fast and I only had to wait for ten minutes before the doctor called me in to review the scan. As expected it was fine. However when I asked where the cyst was that I've had forever was located, she said that she couldn't see it. Then she said that this was an example of easy it is to miss early breast cancer, even with the most detailed scan
I wrote this a week ago so I did call for another appointment to get my results. The nurse said the CT scan was fine, which I knew was the case. And, I finally got approved for Avastin, and so I start next week!
May 3, 2011
in a rut again
I'm in a rut and I feel like I've been trying to climb out of it for months. I was doing so well with my diet and cancer tea and making treatment plans, but everything just fell apart. In the past month I have lost 5lbs and I'm down to 122- even less weight than when I was first having cancer symptoms. My pants almost fell off when I was coaching, and my boss even noticed and told me to fatten up. I've also been so tired and unfocused that I can't really get anything done. I'm run down emotionally and physically. Last week I went in to the doctor and ordered myself a blood count and thyroid test to see what was wrong. I was convinced I was anemic. Although fatigue and weight loss were the exact symptoms I had when I was first diagnosed, I didn't think it was cancer this time because my last PET scan had been clean. After explaining my worries to the doctor, he told me that nothing was wrong with me physically, and my diagnosis= stress. Stress from being tired and jobless, having to move, losing some of my support system, and all the other changes in my life. Stress that has caused so many emotional breakdowns and panic attacks in the past few weeks. I'm can't seem to regain control of my health.
It doesn't help that I'm full on menopausal. I have hot flashes every night which often wakes me up. I must kick my covers off (and my cat) at least 10 times a night. And as I mentioned above, I'm an emotional mess. It's getting embarrassing.
Luckily my entire doctor's office has been amazing. I had a breakdown at the last appointment and got the medical assistant and nurse all worked up trying to help me out. They set me up with the social worker who set me up with prescription assistance to cover the $150 copay for Effexor, an antidepressant that has helped in the past. I had to go off before because it was too expensive, but Swedish got it all worked out. Now I can get it dispensed directly from their pharmacy for free.
I also started Tamoxifen last week. So far I don't have any side effects. Unless you count hot flashes, but I had started to get those before. I'm not sure how long I will be on this but I'm sure it will be awhile. Apparently it interacts with a lot of other medications- including every other psych med that I could be on. It also interacts with most cold medicines. It's not a bad reaction- it just makes the Tamoxifen not work as well.
The social worker also got me approved for financial assistance for Avastin treatments. However, before I can start it, my doc wants a baseline CT scan and a full blood workup. The CT scan was scheduled for this afternoon, and so I didn't have breakfast. I got to the clinic and it turns out that even though the medical assistant gave me a little card with my appointment on it, my insurance company required pre-authorization first. And nobody told me. So I was hungry and crabby most the afternoon. I'n supposed to call tomorrow and get it rescheduled.
I think I may start making protein shakes. The idea of drinking smoothies again almost makes me gag, but I need some way to bulk up. My boss got his wife to bake me bread and cookies with lots of fiber and things like oatmeal and flax. It's pretty yummy and nice to walk into the gym and get a little secret snack. He keeps yelling at me for not eating meat though. Sorry but that's not going to happen!
So the plan is now to get fat and get myself back on track. Getting fat is going to be fun. How many people get to go on that diet? I can't wait. I don't think there is anything I enjoy more than eating (when emotionally healthy). The other day I had one of those bags of ravioli that you can steam in the microwave- I ate the WHOLE bag. Another day I at an entire large frozen pizza. Too bad neither of these things are that great for me, but they're a start. What I really need is a personal chef
It doesn't help that I'm full on menopausal. I have hot flashes every night which often wakes me up. I must kick my covers off (and my cat) at least 10 times a night. And as I mentioned above, I'm an emotional mess. It's getting embarrassing.
Luckily my entire doctor's office has been amazing. I had a breakdown at the last appointment and got the medical assistant and nurse all worked up trying to help me out. They set me up with the social worker who set me up with prescription assistance to cover the $150 copay for Effexor, an antidepressant that has helped in the past. I had to go off before because it was too expensive, but Swedish got it all worked out. Now I can get it dispensed directly from their pharmacy for free.
I also started Tamoxifen last week. So far I don't have any side effects. Unless you count hot flashes, but I had started to get those before. I'm not sure how long I will be on this but I'm sure it will be awhile. Apparently it interacts with a lot of other medications- including every other psych med that I could be on. It also interacts with most cold medicines. It's not a bad reaction- it just makes the Tamoxifen not work as well.
The social worker also got me approved for financial assistance for Avastin treatments. However, before I can start it, my doc wants a baseline CT scan and a full blood workup. The CT scan was scheduled for this afternoon, and so I didn't have breakfast. I got to the clinic and it turns out that even though the medical assistant gave me a little card with my appointment on it, my insurance company required pre-authorization first. And nobody told me. So I was hungry and crabby most the afternoon. I'n supposed to call tomorrow and get it rescheduled.
I think I may start making protein shakes. The idea of drinking smoothies again almost makes me gag, but I need some way to bulk up. My boss got his wife to bake me bread and cookies with lots of fiber and things like oatmeal and flax. It's pretty yummy and nice to walk into the gym and get a little secret snack. He keeps yelling at me for not eating meat though. Sorry but that's not going to happen!
So the plan is now to get fat and get myself back on track. Getting fat is going to be fun. How many people get to go on that diet? I can't wait. I don't think there is anything I enjoy more than eating (when emotionally healthy). The other day I had one of those bags of ravioli that you can steam in the microwave- I ate the WHOLE bag. Another day I at an entire large frozen pizza. Too bad neither of these things are that great for me, but they're a start. What I really need is a personal chef
Subscribe to:
Posts (Atom)