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.

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!

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. :)

The new chemo regimen

I did not get into the clinical trial, and the reason given leads me to believe I never will get into any. Apparantly my "primary cancer" is unclear. I remember way back when I was initially treated being told that my cells had some evidence of endometroid and some of ovarian but the endometroid dominated. For clinical trials they need it to be clear because they are researching ovarian cancer or endometrial cancer... but never a questionable origin. So I'm SOL on the new, promising trials.

So instead I am doing adriamyacin, without the cisplatin. Not sure why we didn't include that. I had to have a MUGA test Thursday morning to make sure my heart was working well enough to proceed. That involves placing an IV and drawing 3ml of blood which is then infused with radioactive material. After 30 minutes, it's reinjected through the IV, the IV is removed and you lay on a table for about 20 minutes while they take pictures of your heart beating for several minutes. From that they can tell what volume of blood your left ventricle pumps out. This test will have to be repeated while I'm on this chemo because it is notoriously hard on your heart and kidneys.

The nice thing is that the chemo treatment takes about 1.5 hours, most of that is taken up with giving the premeds. The chemo is injected by hand into the port by the nurse in two 50ml syringes, and you're done. That's a hell of a lot better than a day and a half in the hospital. So I can work mornings and get infused in the afternoon. If I do it Thursday, I can also work Friday. I do feel more prone to nausea, but the meds have taken care of that so far. I'm also pretty fatigued. That may be related to having less steroids and more benedryl/ativan this time around. I'm pretty tired and sleepy.

Now we'll see what the next few days hold. Sunday night to Monday night were always the worst with the taxol/carbo. I'm keeping my fingers crossed this is less harsh.

Meeting with oncologist and options

I met with my oncologist this morning and I am definitely done with the taxol/carboplatin regimin. He's trying to get me accepted into a clinical trial that has shown some good results for edometrial cancer. He won't know until Tuesday if I meet the criteria. If I do, they will bring me in on Wednesday to review the trial and sign me up if I agree. Then I would start that treatment when I get back from Kodiak.

If I can't get into the trial, they will try cisplatin with something other than taxol (also done in the hosptial with the desensitization process) and see how I tolerate that. If I can't handle both drugs, they'll do single agent. But sounds like my chemo options are running out.

Here's hoping I'm accepted into the clinical trial.

No more chemo this week

But something new is coming down the line. I finally heard from my oncologist's office that I'll just come in for an appointment Friday morning to discuss a new chemo regiment. Makes me nervous, of course, because I've used the same thing since 2003. But maybe this will be something I can do in the infusion center and won't require overnight hospitalization. That would be a plus.

The other good news this week is that side effects from this most recent treatment have been milder. Hopefully I'll be ready to get back to work tomorrow. And have a good trip to Kodiak next week.

Keeping my fingers crossed. :-)

Round Two: Carboplatin failure

Things were looking up at first for yesterday's round 2 of chemo. Blood tests showed things were back to normal. I got checked in and was allowed to leave to get breakfast since everyone knew it would be hours before things really got started. Then we relaxed in the family room until the phlebotomist arrived to access my port. Shortly after that the chemo was ready so we actually got it started around 1pm. At that rate I had a shot at an early morning release. I wasn't counting on it though because it seems something always happens.

Sure enough things were going swell until I was nearly done with my second bag of carboplatin about 8:15pm when my palms started itching and turned bright red. I called the nurse in and she shut off the flow and called the doc for the next steps. As time passed, my arms got red and itchy, and eventually my knees. They finally got some more steroids and benadryl in me and the itching and redness went away. After some discussion they decided to try to proceed with more steroids. We finished bag 2 and got 2/3s through bag three. I was trying to sleep but my scalp started itching badly. I sat up and turned on the light and within a minute my arms and face were bright red and itching. The nurse came in and shut off the flow. By the time she checked in with the doc I was red from head to toe... except for my hands. I even had some hives. No problems breathing though...fortunately. They got it under control but decided to stop the carbo for the night until the doc could see me in the morning.

So I at least got a good night's sleep without the frequent interuptions. I slept until 9, when Darcy got there, with just a couple early morning interuptions. We finally heard from the doc that we're stopping carboplatin and likely switching to cisplatin, but they couldn't do that today because my treating physician wasn't around to make the final decision. So I'll hear from them Monday on the next plan of attack, which may include a return to the hospital next week for the cisplatin.