My brother is a big proponent of mind over matter. I have trouble envisioning a battle like he suggests, but, I'm doing my best to repeat to myself, any of the following... I add a bit when I think of it:
Fight the sarcoma. Kill the sarcoma. Destroy the sarcoma. Break the sarcoma. Battle the sarcoma. Beat the sarcoma. Lyse the sarcoma. Delete the sarcoma. Tear apart the sarcoma. Annihilate the sarcoma. Shrink the sarcoma. Vaporize the sarcoma. Invade the sarcoma. Starve the sarcoma. Eviscerate the sarcoma. Stop the sarcoma. Choke the sarcoma. Evict the sarcoma. Recognize and kill the sarcoma. Vanquish the sarcoma.
Monday, January 21, 2013
Friday, January 18, 2013
Pazopanib end point
Dang. That pazopanib was really treating me pretty well. Easy to take, minimal side effects, and even some repeated tumor response... some even still are!?!? But, others aren't and the disease has progressed, as they say.
Locations: Seems like all over, but honestly, sarcoma doesn't move distally, so; 2 nodules left lung, 2 nodules liver, 1 large(small orange) in my abdomen, the primary tumor, and some other stuff in the abdomen area.
Symptoms: Typical of sarcoma, not much pain. I get some discomfort if I eat a large meal. The only pain I feel is really hard to explain; like a short little shooting pain maybe if you tweaked something. It only happens briefly and isn't wincing, but gets my attention. Only other discomfort is bowel movements, the tumors are pressing up on the GI tract, so if I have to go, I don't really have a choice and have to get to the bathroom pronto. Also, I still have persistent edema in my leg.
Next: I'm prequalified for this trial: http://clinicaltrials.gov/ct2/show/NCT01515306 My doctor thinks it will work well for me since the Ramucirumab works in similar fashion to pazopanib and I had such a good response to that early on. Plan is to start 2/5-2/6 time frame. Only 50 or so patients get to try, so I'm feeling lucky about that.
Thoughts: I was asked if I'm afraid of the next chemo? No, I'm more afraid of wasting good time on things that don't help. My history with chemo has shown that I'm pretty tolerant of it all, and I kind of use that as a barometer of how effective it is. Adria and Ifos, they say I sailed through and we see that wasn't effective. Yondelis(trebectadin), that actually knocked me down pretty good for maybe a day or two, then I was just "blah" for a week; but that didn't work on the cancer. Pazopanib, that actually gave me a lot of pain to start with, but that was more likely from it working on the tumors. If this Ramucirumab works for me, I'm anticipating that pain again. Heck, I'm even hopeful for that pain again, but if I do experience that, I will literally be doubled over, not able to stand up straight and "afraid" to have a bm.
Locations: Seems like all over, but honestly, sarcoma doesn't move distally, so; 2 nodules left lung, 2 nodules liver, 1 large(small orange) in my abdomen, the primary tumor, and some other stuff in the abdomen area.
Symptoms: Typical of sarcoma, not much pain. I get some discomfort if I eat a large meal. The only pain I feel is really hard to explain; like a short little shooting pain maybe if you tweaked something. It only happens briefly and isn't wincing, but gets my attention. Only other discomfort is bowel movements, the tumors are pressing up on the GI tract, so if I have to go, I don't really have a choice and have to get to the bathroom pronto. Also, I still have persistent edema in my leg.
Next: I'm prequalified for this trial: http://clinicaltrials.gov/ct2/show/NCT01515306 My doctor thinks it will work well for me since the Ramucirumab works in similar fashion to pazopanib and I had such a good response to that early on. Plan is to start 2/5-2/6 time frame. Only 50 or so patients get to try, so I'm feeling lucky about that.
Thoughts: I was asked if I'm afraid of the next chemo? No, I'm more afraid of wasting good time on things that don't help. My history with chemo has shown that I'm pretty tolerant of it all, and I kind of use that as a barometer of how effective it is. Adria and Ifos, they say I sailed through and we see that wasn't effective. Yondelis(trebectadin), that actually knocked me down pretty good for maybe a day or two, then I was just "blah" for a week; but that didn't work on the cancer. Pazopanib, that actually gave me a lot of pain to start with, but that was more likely from it working on the tumors. If this Ramucirumab works for me, I'm anticipating that pain again. Heck, I'm even hopeful for that pain again, but if I do experience that, I will literally be doubled over, not able to stand up straight and "afraid" to have a bm.
Wednesday, April 18, 2012
Took weekend off
I'm pretty convinced that all the troubles I've been having are a result of the pazopanib, so I stopped taking it to alleviate that. In some ways it got better, in other ways it didn't, and I was still in pain when I saw my doctor Tuesday. He's not convinced it's the pazopanib and really wants me to start/stay on it for a while. We talked about the issues, but didn't really come up with any solutions. I asked for pain meds and got that, but I'm hesitant to take those and start a new set of side effects that I have to manage. He ordered a CT to see if there was anything going on in my abdomen; there was nothing conclusive about what could be causing the pain, but he is still not convinced it's the drug. The CT did show, as I suspected, that at least one tumor had a "marked" response to the pazopanib, so we really want me to get back on it. I think it might be some kind of infection but really the coincidence with me starting on the drugs is hard to ignore.
I go in for blood work either today or tomorrow. I started on a reduced dosage of the pazopanib again. I feel ok as long as I just sit still, which although the med might be working, is not the quality of life I was hoping for.
I go in for blood work either today or tomorrow. I started on a reduced dosage of the pazopanib again. I feel ok as long as I just sit still, which although the med might be working, is not the quality of life I was hoping for.
Friday, April 13, 2012
Pazopanib Day 3
Wow, ok, so now this stuff is really starting to kick in. My pains at what I know to be tumor sites persisted for the rest of the day and seemed to get a bit worse, so I loafed around home the rest of the day. I took some tylenol for the pain, it did ok, but I don't think it was enough...I ended up falling asleep a bit early for me and woke up for my dose a bit later. After I took that dose I went to bed and was able to get to sleep, but woke up at 1:30ish with some of the worst stomach pain I've felt, as well as the pain I seem to be feeling at the tumor sites. I kept going over in my mind what number I'd give the pain since the nurses always ask that...7 or 8 I think... I was able to finally get back to sleep an hour later. I got up for work like usual, but ran late, still having a lot of pain in my abdomen and feeling like I might vomit. I didn't have diarrhea this morning, but a bit of it last night. The only thing really getting to me currently is the pains. One good thing so far, that leads me to believe it's helping, is the swelling in my leg has gone down a bit.
In other news, the cryoablation specialist I found was able to look at my scans and determined I am not a good candidate. There is too much tumor. I forgot to ask if they could just remove some of the tumors, not all, but really in the medical community that doesn't seem to be they way they want to do things... It's frustrating, but I'm on to other leads and I think this pazopanib is working for me. I got on a waitlist for a clinical trial in SFO that was looking good to me...
In other news, the cryoablation specialist I found was able to look at my scans and determined I am not a good candidate. There is too much tumor. I forgot to ask if they could just remove some of the tumors, not all, but really in the medical community that doesn't seem to be they way they want to do things... It's frustrating, but I'm on to other leads and I think this pazopanib is working for me. I got on a waitlist for a clinical trial in SFO that was looking good to me...
Thursday, April 12, 2012
Pazopanib day 2
Well, after most of the day was fine, I started to get a headache towards the end of the day. I took aspirin for that and it helped. After that, just some abdominal pain which seems to be located near my tumors... I took my dose again last night before bed. This time I woke up several times having to go to the bathroom bad. Then in the morning, I had diarrhea, one of the most common adverse reactions. So far the rest of today has been fine.
Wednesday, April 11, 2012
Starting Pazopanib(Votrient)
Finally was able to get on Votrient. A bit of a chore to get that going from the manufacturer and insurance. But, I now have it in my possession. Last night I took my first dose, before bed. Woke up fine, no problems yet, but I'm paranoid about every little thing being a side effect or something. I have read of some weird side effects, but nothing major. We'll just keep trucking...
Friday, April 6, 2012
Clinical attempt
Unfortunately, not able to get on the clinical trial in Canada. My Dr. referred me, but the trial is closed; per British Columbia CA(BCCA), the company is having financial difficulties. I wasn't clear on whether that is in reference to the BCCA or the actual drug manufaturer(sponsor). The drug was for an HDAC inhibitor that has shown good results and great tolerability. Many HDACi's seem to be well tolerated.
That lead to my brother finding out about a clinical HDACi drug called PCI-24781. I looked up some information on it and it will be tested in combination with Pazopanib in a trial in SF. I'm going to see if I can get on that one. It seems to have a large enrollment option and starts soon. Since I'm getting scripted for Pazopanib, I'm cautiously optimistic I can get on it. It's Phase 1, so it's open label... NCT01543763 http://clinicaltrials.gov/ct2/show/NCT01543763
Other news; what a fiasco to get on Pazopanib... I was told I could get the script filled locally, then the manufacturer informed the pharmacy they can't/won't ship to them. I ended up spending over an hour on hold and transferring around the manufactures help lines and my insurance helplines before I was able to get my insurance to send the drug to me directly. They just need the script from my Dr. Should get that today...
Cryoablation; I received a call from them, the had a problem with the cd's I provided them, so I'm going to have to get new ones from my Dr. I'm dragging my feet on that...
That lead to my brother finding out about a clinical HDACi drug called PCI-24781. I looked up some information on it and it will be tested in combination with Pazopanib in a trial in SF. I'm going to see if I can get on that one. It seems to have a large enrollment option and starts soon. Since I'm getting scripted for Pazopanib, I'm cautiously optimistic I can get on it. It's Phase 1, so it's open label... NCT01543763 http://clinicaltrials.gov/ct2/show/NCT01543763
Other news; what a fiasco to get on Pazopanib... I was told I could get the script filled locally, then the manufacturer informed the pharmacy they can't/won't ship to them. I ended up spending over an hour on hold and transferring around the manufactures help lines and my insurance helplines before I was able to get my insurance to send the drug to me directly. They just need the script from my Dr. Should get that today...
Cryoablation; I received a call from them, the had a problem with the cd's I provided them, so I'm going to have to get new ones from my Dr. I'm dragging my feet on that...
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