Been a while since I've updated, mostly because it's a long story that I haven't felt like spending the time on, so I thought I would just start with where things are out now and maybe fill in as I go along so I don't have to do it all at once. I'm back doing chemo again, this time Avastin by itself. My CA125 had gotten up to 192 before they decided to bring me back in. Just before starting it was up to 217, which is a smaller rise per month than I had been having. I get infusions every 2 weeks. The nice thing is that there are no real side effects. It only takes about an hour, with no pre-Meds and no need for nausea Meds at all. There are very serious, but rare side effects, like bowel perforations or strokes. Too soon to tell if it's working.
The hard part is dealing with the pain from the tumor in my hip. I did get referred back to the radiologist but he said you can't do Avastin and radiation at the same time. But more concerning, he didnt think more radiation would help with the pain. He said they would hold it in reserve and possibly go to it to preserve the bone in my hip. If my hip breaks and can no longer support weight, I'm screwed. So the pain has gotten worse since early September. Some days are better than others, but no days are good, except the day I took steroids to prep for CT scan.
So I'm trying various methods that might help some. I've done massage, which feels good in the moment, but lasts for only a short term and doesn't make walking any easier. I also started acupuncture which I think has helped a little bit, but it is early in the treatment. I finally saw a physical therapist this week and she recommended I use a walker instead of a cane. I tried one out and sure enough, it made walking considerably easier. Not that it doesn't hurt, but it's much better than using a cane. Insurance will pay for 1/2 and there was supposedly a 2 day turn around for them to get me one. I was desperate enough I didn't want to wait so I went out Thursday and got what would be a second one. Getting it up and down the stairs at home on my own did not seem practical so I plan to leave one in the house and one in the car to use when I'm out and about. My insurance one should have been here Friday and of course I have not even gotten a CALL from them to set up delivery so I'm glad I took the time the go out and get one on my own. it's going to take some getting used to and will make my arm sore until I get used to it, I'm sure.
I also discussed other methods of working around the pain and will plan to put up grab bars in the bathroom, get a "sock assist" that will help me put my socks on myself, and a tub bench and a couple other things. She gave me some very basic excersises to strengthen other muscles in my leg that are having to compensate for my worthless adductor muscles. Hopefully all this will help in time, but it will likely really come down to whether the Avastin is effective in stopping or reducing the tumors.
Saturday, October 29, 2011
Thursday, July 21, 2011
Officially back in treatment
Hi all
Been quite a while since I updated. I suppose no news is good news, but that hasn't exactly been the case. Things have been kind of ominously flowing along since April, May, June. I felt pretty good in April. So good in fact that I decided to try my old 2.3 mile walk around Seward Park on a Saturday morning. It was great! I felt so good I decided to do it again Sunday morning. Keep in mind, we had plans to go to Disneyland for a week in May and I wanted to get used to walking again. Well my Sunday walk started off fine, but half way around I started getting very tired and achy. Took me a full week to recover. After that I was worried about the Disney trip, but NO WAY was I going to miss it!
Made the trip and did pretty well for the most part. I had the hardest time with standing around, waiting in line or waiting for shows. I also felt like I needed more breaks than I had in Dec in WDW. We watched World of Color one night and I nearly got sick I was hurting so much from standing around. I eventually had to leave early. I was hurting the rest of the stay as well. Once back home, it took me weeks to recover some energy. And my legs were achy all the time, to the point I needed Ativan or Vicodin to get to sleep. I was in for a blood test after we got back and the CA125 was up to about 38. Disturbing, but I figured some of that might be accounted for by my leg achiness. The oncologist also wanted to me to go get my overdue MRI on my head tumor.
I scheduled the MRI for 6/6 and was to meet the doc right after to discuss. She kept me waiting a long time and finally came in to say some of the scans were missing but she hadn't seen anything on what was there. She said she'd call either way once she had the rest. Two days later I get a call that there is some new growth in one spot. She was going get insurance approval for more cyberknife treatment which was going to take some time, but no rush.
Also in June we had plans to go to New Orleans. My energy had pretty much returned after a lot of rest. I was worried about the heat and humidity, but I love New Orleans and wanted to do what I could. The weekend before our trip I felt, out of the blue, that old familiar pull in my groin that has been a precursor to my hip tumor growing in the past. I had a blood test that Monday and Tuesday they called with the results to 58! Twenty points in a month! However, my oncologist wanted to wait for a "doubling" of the marker and for the tumor in my head to be treated to see if that had an effect on the number.
So off to New Orleans we go. Two days after we got there, I was back to using a cane to get around. It was very hot and humid and sapped my energy quickly, but I'm glad I went. Still had a good time in spite of everything else. The groin pain also eased up after a couple days and I was able to get around OK.
I finally got the insurance OK for the Cyberknife and went in on July 12th for another CT and MRI for treatment planning purposes. Two days later my groin REALLY started hurting again, to where I could barely walk. I was practically draggin my leg around and in a lot of pain. I knew I'd be getting another blood draw on the 18th so I just gritted my teeth through it. I figured I'd be due for another CT scan and we'd figure out what to do from there.
So by yesterday I'm still waiting to hear when Cyberknife is scheduled and waiting for my latest CA125. They called mid-day to give me the treatment schedule: Starting today, 5 days through next Wednesday. I started on steroids for that this morning. My groin had felt better (being a relative term)yesterday and after taking steroids this morning, it was even better. So when the oncologist nurse called to say my number is now up to 98, I thought for sure I would be in treatment again. Instead she says the doc wants to do another test in October after I finish Cyberknife. I said, I finish Cyberknife next week. AND my groin hurts a lot! Though it had been better the last couple days. No real response to that. Hmmm. Makes me wonder if he has ANY ideas for more treatment. Or if whatever they do next basically worthless so why do it until I'm BEGGING for something. I have to say I was shocked.
Any way, I did start Cyberknife this morning. They were great as usual. I asked them if they could get me a disabled pass and they took care of it since they are the only place apparantly still treating me. I will also be on steroids through next week so hopefully my groin will be doing better over that time. And maybe I should get a referral to a PT or an accupuncturist for help with the pain. I also intend to talk to my PCP and the Cyberknife doc about options. And to get more Ativan and Vicodin for the pain. I'm about 1/2 way through my last presciption of 30 -- most of that in the last 2 weeks.
UPDATE
I got a call from the oncologist's office on Friday to clarify that when he said he wanted to see me in three months, the nurse thought that meant from that day. Turns out he meant from the LAST time he saw me, May. So I actually have an appointment in August now, which is much more reasonable.
The leg/groin has been more like it's old self: a bit achy, but mainly bothers me when I walk. Using the cane helps.
I am noticing a little vision problems from the radiation -- mainly a sensitivity to light. I was hanging white sheets on the line in bright sun yesterday and it took several minutes for my right eye to make the adjustment back to indoor lighting.
Been quite a while since I updated. I suppose no news is good news, but that hasn't exactly been the case. Things have been kind of ominously flowing along since April, May, June. I felt pretty good in April. So good in fact that I decided to try my old 2.3 mile walk around Seward Park on a Saturday morning. It was great! I felt so good I decided to do it again Sunday morning. Keep in mind, we had plans to go to Disneyland for a week in May and I wanted to get used to walking again. Well my Sunday walk started off fine, but half way around I started getting very tired and achy. Took me a full week to recover. After that I was worried about the Disney trip, but NO WAY was I going to miss it!
Made the trip and did pretty well for the most part. I had the hardest time with standing around, waiting in line or waiting for shows. I also felt like I needed more breaks than I had in Dec in WDW. We watched World of Color one night and I nearly got sick I was hurting so much from standing around. I eventually had to leave early. I was hurting the rest of the stay as well. Once back home, it took me weeks to recover some energy. And my legs were achy all the time, to the point I needed Ativan or Vicodin to get to sleep. I was in for a blood test after we got back and the CA125 was up to about 38. Disturbing, but I figured some of that might be accounted for by my leg achiness. The oncologist also wanted to me to go get my overdue MRI on my head tumor.
I scheduled the MRI for 6/6 and was to meet the doc right after to discuss. She kept me waiting a long time and finally came in to say some of the scans were missing but she hadn't seen anything on what was there. She said she'd call either way once she had the rest. Two days later I get a call that there is some new growth in one spot. She was going get insurance approval for more cyberknife treatment which was going to take some time, but no rush.
Also in June we had plans to go to New Orleans. My energy had pretty much returned after a lot of rest. I was worried about the heat and humidity, but I love New Orleans and wanted to do what I could. The weekend before our trip I felt, out of the blue, that old familiar pull in my groin that has been a precursor to my hip tumor growing in the past. I had a blood test that Monday and Tuesday they called with the results to 58! Twenty points in a month! However, my oncologist wanted to wait for a "doubling" of the marker and for the tumor in my head to be treated to see if that had an effect on the number.
So off to New Orleans we go. Two days after we got there, I was back to using a cane to get around. It was very hot and humid and sapped my energy quickly, but I'm glad I went. Still had a good time in spite of everything else. The groin pain also eased up after a couple days and I was able to get around OK.
I finally got the insurance OK for the Cyberknife and went in on July 12th for another CT and MRI for treatment planning purposes. Two days later my groin REALLY started hurting again, to where I could barely walk. I was practically draggin my leg around and in a lot of pain. I knew I'd be getting another blood draw on the 18th so I just gritted my teeth through it. I figured I'd be due for another CT scan and we'd figure out what to do from there.
So by yesterday I'm still waiting to hear when Cyberknife is scheduled and waiting for my latest CA125. They called mid-day to give me the treatment schedule: Starting today, 5 days through next Wednesday. I started on steroids for that this morning. My groin had felt better (being a relative term)yesterday and after taking steroids this morning, it was even better. So when the oncologist nurse called to say my number is now up to 98, I thought for sure I would be in treatment again. Instead she says the doc wants to do another test in October after I finish Cyberknife. I said, I finish Cyberknife next week. AND my groin hurts a lot! Though it had been better the last couple days. No real response to that. Hmmm. Makes me wonder if he has ANY ideas for more treatment. Or if whatever they do next basically worthless so why do it until I'm BEGGING for something. I have to say I was shocked.
Any way, I did start Cyberknife this morning. They were great as usual. I asked them if they could get me a disabled pass and they took care of it since they are the only place apparantly still treating me. I will also be on steroids through next week so hopefully my groin will be doing better over that time. And maybe I should get a referral to a PT or an accupuncturist for help with the pain. I also intend to talk to my PCP and the Cyberknife doc about options. And to get more Ativan and Vicodin for the pain. I'm about 1/2 way through my last presciption of 30 -- most of that in the last 2 weeks.
UPDATE
I got a call from the oncologist's office on Friday to clarify that when he said he wanted to see me in three months, the nurse thought that meant from that day. Turns out he meant from the LAST time he saw me, May. So I actually have an appointment in August now, which is much more reasonable.
The leg/groin has been more like it's old self: a bit achy, but mainly bothers me when I walk. Using the cane helps.
I am noticing a little vision problems from the radiation -- mainly a sensitivity to light. I was hanging white sheets on the line in bright sun yesterday and it took several minutes for my right eye to make the adjustment back to indoor lighting.
Wednesday, March 23, 2011
The Treatment Break Goes On!
I had my appointment with the oncologist this morning. My tumor marker had actually gone down a couple points, but is basically stable. So my break will continue until the marker either doubles, I get new symptoms, or the CT shows new developments. My next blood draw is mid-April, my next appointment with the oncologists is mid-May, and CT scans quarterly so probably due for another in June. Big relief. Now I can go to Disneyland with my 5 year old nephew in May!
Saturday, February 19, 2011
A Short Treatment Break
It's better than no break at all!
It's been a long time since I've written anything because I just been plugging along with my last, lengthy round of chemo -- Adriamyacin. I had some concerns before beginning because the stuff has the nickname "the red devil" but I actually had a pretty easy time with it. The infusions were quick, and no steroid pre-treatment the night before. I was able to work the next day, Fridays, then felt my worst on Sundays and improved until I was back at work on Wednesday. There was some nausea but it had gotten to where the side effects from the anti-nausea pills bothered me more than the nausea. The two biggest side effects were fatigue and a gummy mouth and bad taste in my mouth. I was able to take a trip to Disney World in December and held up surprisingly well. My hair also grew back very slowly to the point that I quit wearing a hat and dyed it blue again in early January. But I was definitely ready for a break having been on chemo since early August.
At my last round on January 26th, the nurse practitioner told me my CA125 had gone up to about 19, which is not normal for me. That got me worrying a bit. Then when I went in for my pre-chemo appointment on Wednesday, before my last round of Adriamyacin, the doc told me it had gone up again to 28 or so. Not good. Since Adriamyacin is so hard on your heart, he thought it best to get a new CT scan to see what was up rather than do another treatment if it wasn't working anyway. So instead of chemo on Thursday, I had another CT scan. I just knew it would be bad news with that rise in the CA125.
Got the call yesterday that everything is still stable, though! That means,other than the slight growth in my hip tumor last spring, nothing else has shown growth or progression since finishing treatment in the spring of 2009. Gotta be happy with that! I am due for a MRI, but everything else is fine for now. That means I didn't have to do my last chemo and I don't go back again until March 23rd. Five weeks of no appointments. And 8 weeks off of chemo. Yay!
I do believe the plan is to start a new round of something in March, though. But I will enjoy this break while I can. :)
It's been a long time since I've written anything because I just been plugging along with my last, lengthy round of chemo -- Adriamyacin. I had some concerns before beginning because the stuff has the nickname "the red devil" but I actually had a pretty easy time with it. The infusions were quick, and no steroid pre-treatment the night before. I was able to work the next day, Fridays, then felt my worst on Sundays and improved until I was back at work on Wednesday. There was some nausea but it had gotten to where the side effects from the anti-nausea pills bothered me more than the nausea. The two biggest side effects were fatigue and a gummy mouth and bad taste in my mouth. I was able to take a trip to Disney World in December and held up surprisingly well. My hair also grew back very slowly to the point that I quit wearing a hat and dyed it blue again in early January. But I was definitely ready for a break having been on chemo since early August.
At my last round on January 26th, the nurse practitioner told me my CA125 had gone up to about 19, which is not normal for me. That got me worrying a bit. Then when I went in for my pre-chemo appointment on Wednesday, before my last round of Adriamyacin, the doc told me it had gone up again to 28 or so. Not good. Since Adriamyacin is so hard on your heart, he thought it best to get a new CT scan to see what was up rather than do another treatment if it wasn't working anyway. So instead of chemo on Thursday, I had another CT scan. I just knew it would be bad news with that rise in the CA125.
Got the call yesterday that everything is still stable, though! That means,other than the slight growth in my hip tumor last spring, nothing else has shown growth or progression since finishing treatment in the spring of 2009. Gotta be happy with that! I am due for a MRI, but everything else is fine for now. That means I didn't have to do my last chemo and I don't go back again until March 23rd. Five weeks of no appointments. And 8 weeks off of chemo. Yay!
I do believe the plan is to start a new round of something in March, though. But I will enjoy this break while I can. :)
Subscribe to:
Posts (Atom)
