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.

Hospital Admission was just a big mistake

I spoke with the doc covering for my oncologist's office this morning after my post and she told me when she talked with Urgent Care about the blood test results last night, they initially said the ANC (Absolute Neutrophil Count) was 700. They later said it was 300, which would require hospitalization. They couldn't explain that discrepancy to the doc satisfactorily so she had to admit me to run their own tests.

After IV antibiotics last night and further blood tests this morning, my ANC is low, but not so low as to require hospitalization. My total white blood cells had improved overnight so I was already on the mend. So they discharged me at 11:30. Needless to say, I pretty pissed at Urgent Care. The gave me a sleepless night, a bunch of stress, another sick day used over nothing.

Greetings from the hospital again

After chemo last week, I would normally start feeling better by Tuesday, but this go around, I didn't perk up as soon as I should have. In fact, I got a sore throat and started running a low grade fever by Tuesday evening. I ended up missing work all week. I felt a little better Saturday morning and met some friends for an event, but left early and crashed again after I got home. Felt bad all day Sunday as well. By Sunday night my throat was so sore I finally took a vicodan and was able to gt some sleep. Yesterday morning I felt much better, though I had no voice. I went to work and held up pretty well, though all the talking really made my throat hurt by the end of the day.

I was scheduled for a blood test at the oncologist's and I asked them about the sore throat. They said to see my primary care physician if I wanted treatment for that. After the test, they called and left a message that my white blood cell count was "a tad bit low" and I should see my primary care physician. I didn't get that message until after 5 because my voice mail is screwed up. So I got the earliest appointment I could get which was Wednesday morning. In an abundance of caution I decided to call the consulting nurse at Group Health to see if it was ok to wait that long. She told me to go to Urgent Care that night. After 4 hours and a bunch of tests, turns out my neutrofils were alarmingly low. They talked with the oncologist's office and had me admitted to Swedish about 1am. Got about 2 hours of sleep last night.

Spoke with the resident this morning and they are still running tests looking for signs of infection. They will give me a shot to boost my production of white blood cells, then let me go when my counts are closer to normal. I'm not looking forward to this. I hear those shots hurt.

Out of the Hospital after Round 1

I had high hopes of getting out early this time given that all the chemo orders got submitted early and I was showing up at 8am. I had my port accessed shortly after 9am... and the waiting commenced once again. From 9am to 2pm... nothing. Finally the pre-meds began a little after 2pm. Major frustration. I didn't finish the Taxol until 6:30 in the evening. Then... more waiting. The carboplatin had not been mixed yet and it was shift change. Finally we started with more pre-meds and the carboplatin commenced at 9pm. That put me on a release schedule of about 2pm Saturday afternoon. It also assured I would be awakened repeatedly all night. They gave me a big dose of benedryl to knock me out, then woke me up every 45 minutes to either take vital signs or change the carbo bag until 1:45 in the morning when they started the final bag. They decided to run it at a 10 hour rate instead of the usual 12 hour rate which put me back on pace to be out of there before noon. And from that point, I was only awakened every hour and a half for vital signs. Despite that, I still felt like I slept OK. I was so zonked from the drugs I barely woke when needed and fell right back to sleep. I love the night nurse. I remember her from my last go around.

I got a visit from the doc making rounds about 7am and got up and ordered breakfast. Then I got a surprise visit from my oncologist, too. That was nice of him to visit me while seeing his surgical patients. I asked about my CT scans and he said he got them, and didn't remember there being anything noteworthy in them. He also noticed my iPad and asked about it. I showed him a few things and said I loved it. By the time he left he said he would probably be getting one soon. Ha!

So I finished the last bag and they had everything ready to check me out. The nurse came right in, removed the access needle and I was on my way before noon.

I have decided I just need to be zen about the whole thing and just anticipate being there until Saturday around noon each time. I might try telling the nurse I will be downstairs until noon and to call if they get things ready earlier. That 5 hour wait drove me nuts. They did a good job of keeping me medicated and hydrated this time. That was encouraging. They even gave me a new 3 day nausea med, twice, and the usual zofran.

So now to get through the next 3 days. Sunday night to Monday night should be the worst. Then I climb out of the hole slowly... then wait to lose my hair again. Boo-hoo!

Chemo Begins Again August 6th

I saw my oncologist on Friday and went through the current treatment plan. I will return to taxol/carboplatin with the first infusion occurring this Friday, the 6th. It will be with the overnights at Swedish Hospital. I've already done the bloodwork and the orders should be in when I check in Friday morning at 8am, so I'm hoping they can manage to get this round done and have me out of there by Saturday MORNING for a change. I'm doing a CT Scan tomorrow for a baseline (things may have been growing since the last one on May 20th) and we'll probably do another after 3 treatments to see if it's working this time around. He had me stop with the hormones saying he doesn't believe they are working to control growth any longer.

My sister will be in town this weekend for a couple Seattle Storm games. I'll make the Thursday one, but doubt I'll feel up to Saturday night's game. The Blue Angels are in town for Seafair next weekend and I hope to get a good show from my hospital room. :-)

Sounded like my doc was thinking of giving me another week to recover from radiation, but I needed to start this week to be able to make my trip to Kodiak in September during a feel good part of the cycle. The sooner I get started, the sooner I'll be done. If things stayed on track, my last treatment would be the Friday before Thanksgiving so I could be feeling better for Christmas. Lets hope anyway.

Radiation update

Just a week left, but it's started to kick my butt energy wise. I don't remember being this tired the first couple times I did this, but I was doing chemo, too, then, and probably blamed the chemo more than the radiation. My hip is doing pretty well. Every now and then I'll have a stiff day, but I think it's getting better.

I called my oncologist about starting chemo and he says ideally they would want to start 3 or 4 weeks after finishing radiation. I rescheduled our trip to Kodiak to September so we can be in Kodiak for my sister's birthday and will just ask him to work around that trip. That means starting sometime in mid August. I would just as soon get it over with and to do it in the "ideal way" rather than take a break right now.

MRI results -- a bit of good news

I had an MRI today. The process was miserable. The headrest pad was too thin and the back of my head really started aching before we even got to the contrast dye portion of the test. FINALLY we got there and I only had about 10 minutes left. Then about a minute from the end, the tech comes on and says the contrast did not inject so we had to start that section over. Another 11 minutes on the table with no break. I was pretty miserable. As it was, I finished about 2:30 and had to be at the cyberknife Doc's appointment at 3:00. I rushed over there with a little time to spare.

The reward was that my head tumor is STILL "rock solid stable". Sweet! What I love about this Doc is that she always takes the time to answer questions and show me the scans to explain everything thoroughly. She confirmed for me that there has been no change in the spleen tumor. So only the hip and a tiny 1 cm tumor on the right side had grown any. She was very positive that this round of radiation would either kill or send into another long remission the tumor in my hip. She was also confident that I wouldn't have chronic pain there. She said I should take it easy, but it should be feeling better once radiation is finished.

What's more, she thinks the hormoe therapy is still being effective. She said sometimes if you have multiple tumors some will grow while others are responding to the treatment. She suggested asking the oncologist to delay chemo until the end of summer. "Scan it again in 10 weeks and take it from there." I'm sure I'll bring that up. :)

All in all a big mood booster when I really needed it. :-)

One Week Down, Four to Go

Finished my first week of radiation today and I can sure tell. My hip has been much sorer, even by the weekend. It was really bugging me last night and I had to up the dose of ibuprofen and make sure I stay on top of it. I do remember it getting worse when I did this back in 2008, but then it the pain went away completely. What makes me nervous was the doc's prediction that I would have chronic pain after this. Just how much remains to be seen. So that has me stressed out a little.

The sessions themselves are more trying, too. Lying still when my back hurts for 20 minutes wears me out each morning. Four weeks seems like a long time today.

First Radiation Session

This was something new today. I'm doing IMRT which is kindof like a crude cyberknife. Instead of 2 or 3 long blasts, they do a series of short blasts from one position, shifting the plates in the machine each time. Then on to position 2 for another series of short bursts. A total of 6 short burst sessions. Total time on the table is something like 20 minutes. The position I'm in is not very comfortable, but it's tolerable.

I won't finish radiation until July 15th so my planned trip to Kodiak isn't going to happen. I would imagine I'll also start chemo pretty quickly once the radiation is done. I gues I should call the oncologist to let him know the end date. Maybe I'll wait until I've got the results of my MRI scheduled on the 18th.

I should add that my hip has not been bothering me lately like it had been. I've been using the cane when I have to go any distance. So unless the radiation ramps up the pain, I'm doing OK for now.

Radiologist appointment: Good news/Bad news

I saw my radiologist today to discuss treatment. Sounds like the location of the growth is in a bit different spot... more in the bony ring at the base of my left hip. Those are thin flexible bones designed to flex when you walk. As such, they are more delicate to treat but it is treatable with radiation. He believes the treatment will again stop the growth. The bad news is that I am likely to have chronic pain there for the rest of my life. Unlike the last treatment when the pain was alleviated by the radiation, it likely won't get any better. He was ready to sign a form for a permanent disabled parking permit, which took me aback a bit. He also thought about sending me for cyberknife treatment, but thought better of it. Most likely because he didn't think insurance would approve when regular radiation would do the same job.

So... treatment planning session on Friday, a week to put a plan together and radiation will commence about June 7th. This will be a lower/slower treatment, so it will be drawn out over 5 weeks, unlike the 3 weeks I did last time. He also thought there would be minimal side effects, just like last time. Another tidbit of good news.

Latest CT Scan results -- Back to treatment I go

I was really expecting this, this time, but that doesn't make it any easier to actually hear it. For a full 14 months after finishing radiation to my hip I'd had no pain in my hip/groin at all. In February I pushed a big stack of carts at Costco into a holding bin and that evening started feeling that old ache in my groin. It got better after a while and when I had my March check-up the oncologist really felt around the groin area throroughly and didn't feel anything. Things kept feeling better until mid April when I really overdid it one weekend and my hip/groin got really sore again. It didn't really get any better and then it started getting kindof achy on top of that. I was scheduled to return for a regular check-up in June, but the persistent discomfort that was so similar to how it felt in November 2008 led me to call them up early for an early CT Scan. I had that done yesterday... got the results this morning.

The tumor in my hip is growing again. Apparently there's one in my right groin that has also grown a half centimeter, but I have no symptoms from that. My spleen is still stable and there is no new growth so that's all positive news. But I'm getting referred back for more radiation to the hip and will also get back on chemo once I finish the radiation. I'll be doing the taxol/carboplatin regimine again initially. If that doesn't work as well this time, he'll switch to another type. But I'll lose my hair either way. It'll be different being bald in the summer. Could be interesting. I'm considering dying my hair blue again right before it falls out. :)