This treatment went very well. I tolerated all of the meds very well, but one of the things I've noticed is steroids give you an appetite like crazy and I pretty much ate so much I became a bit "stopped up" when we got home. The nurses are all great, the facility is great. The only problem I ran into was I got sweaty on the way home and when I got out of the car got chilled so bad I was shaking uncontrollably. Luckily, my wife had a lot of blankets sitting on the steam register and she wrapped me up. Took 2 hour bath, all problems resolved. Nurse said I might feel a bit "wonky" and she's been right about everything so far.
Day 2
Steroids make me where I cannot sleep and have me pretty wired. I think I have about experienced every possible side effect. But the night of day 2 I only got 1 hour of sleep.
Day 3
Blood draw. Really tired. Managed to stay awake most of day dozing a few times. Went to library and store to break up day.
Day 4
Rest day. Wife and daughter off shopping so I'm catching up on 40 episodes of Naruto, my favorite Anime.
I feel pain on my left side which seems to correspond with other tumor necrosis sites I've had pain before. More energy. I think this stuff is really working. Hoping I can be put up to max dose soon again, the more I get I think the better.
Saturday, December 13, 2014
Saturday, December 6, 2014
Dec 5-6 2014
Most, if not all of the side effects are now gone. I feel really good. My personal working theory is this: I have had a lot of buildup in my lungs of fluids and in the past nodules there were seen but killed by a HACE back in 2005. I believe I have just wacked a bunch of micro-carcinoid - which are virtually non-detectible by the current technologies and that is why I went into such utter shock. I know they are going to reduce the dose, but I hope I get to stay in the program.
Muryphy's law continues to badger me as I keep having to go in for more and more "forgotten" or incorrect testing. Luckily today I discovered the "lab" part can be taken care of 12 miles away at a UofM urgent care center - so life may get a little easier.
Most, if not all of the side effects are now gone. I feel really good. My personal working theory is this: I have had a lot of buildup in my lungs of fluids and in the past nodules there were seen but killed by a HACE back in 2005. I believe I have just wacked a bunch of micro-carcinoid - which are virtually non-detectible by the current technologies and that is why I went into such utter shock. I know they are going to reduce the dose, but I hope I get to stay in the program.
Muryphy's law continues to badger me as I keep having to go in for more and more "forgotten" or incorrect testing. Luckily today I discovered the "lab" part can be taken care of 12 miles away at a UofM urgent care center - so life may get a little easier.
Thursday, December 4, 2014
12-4-2014
Doctor visit went ok. Sounds like they are going to reduce the amount of drug for me because they have seen other reactions like mine. There is a small possibility I might not be able to continue, but my experience is when I get THAT sick I get a huge benefit from tumor necrosis. Next CT will be 7 weeks away but I will be interested in seeing what my blood work for CGA and other markers are like. I felt fatigue at first today, but after a small rescue of Octreotide about 200 mg I feel a lot better.
Anyway, fingers crossed I'll be able to continue and get what I need. I really think this drug is working!
Doctor visit went ok. Sounds like they are going to reduce the amount of drug for me because they have seen other reactions like mine. There is a small possibility I might not be able to continue, but my experience is when I get THAT sick I get a huge benefit from tumor necrosis. Next CT will be 7 weeks away but I will be interested in seeing what my blood work for CGA and other markers are like. I felt fatigue at first today, but after a small rescue of Octreotide about 200 mg I feel a lot better.
Anyway, fingers crossed I'll be able to continue and get what I need. I really think this drug is working!
Hi, I'm Gary
I have a rare cancer called Carcinoid and it has spread to my liver and a few other places. During the summer I did a non-chemo embolization and it worked well. My new Doctor at the Universiity of Michigan wanted me to try Xeloda and something else orally for a more systemic treatment - but the requests were turned down flat. I would like to dedicate this page first to my loving wife, my supportive kids and extended family, and finally to Larry - who had signed up for a number of trials when he was alive and contributed a wealth of information to me on the Carinoid Listserv - as well as his loving and wonderful caretaker Linda Silversmith who still to this day participates in the group and adds a lot to the rolling information narrative the group builds.
So, as an alternative, an invitation had been made to join a Phase 1 trial for something called TKM-080301. I was turned down initially, but due to some growth discovered in the late summer/early fall, I was invited back to the University of Michigan to be the last enrollee in the TKM trial.
This is a drug invented by a company called Tekmira Pharmaceuticals Company. It is a study drug and not available (and probably not available until it makes it through the FDA process) to Americans until it is approved. The company is based in Vancouver and specializes in RNA delivery mechanisms.
From materials provided to me:
"TKM-080301 contains a small piece of RNA, called siRNA which is important in reducing a protein called PLK1. PLK1 is present at high levels in dividing cancer cells. In reducing PLK1, TKM may be able to block the cancer cells from dividing. In experiments in the lab with cancer cells in test tubes and mice, TKM has been shown to reduce PLK1 which is important for blocking the division of cancer cells. The study is being done to test the highest level of TKM and what effect is has on you, find the highest dose (currently 1 .75 mg/kg/wk) without causing bad side effects, and find the dose for safer future studies. This also evaluates the TKM is absorbed by your body."
So I read the 28 page document outlining the fact I'd be in the infusion area for 10 hours on the first day which covers all of the side effects and came to the conclusion I really wanted to participate. So the past few weeks have been a whirlwind of tests, pokes and prods and meetings with doctors. I thought I would have to stop taking Sando LAR, however, I don't and that clenched the deal for me.
Phase 1 is important to me because I you do not have the chance of ending up in a "control group" who get a placebo and not the actual drug. I wanted the drug because it sounds like an innovative way they've discovered to perhaps stop Carcinoid Cells from dividing. One of my good friends here on the list said "this sounds like Star Trek." I agree. I hope it works and I hope I get a cure. What the study doctors have told me is the greatest success rates come from Carcinoid patients.
Possible side effects; fever, chills, shortness of breath and low blood pressure. Major side effects is it may briefly injure the liver and spleen. Some animal studies showed a mile but reversible injury to the heart. Temporary reduction of red blood cels or platelets and temporary increase of white blood cells in your body.
As of May 2014, 47 subjects have been treated with TKM. 27 of these have been treated at my same dose of .75mg/kg/wk. One subject died from low blood cells and platelets, although this was thought to be due to tumor spread and growth rather than the drug itself. 9 had changes in spleen size, it may be due to TKM and the way it is intended to work in tumors. In each of these cases the spleen has functioned with no negative side effects. Cytokins in blood may increase and cause fever, chills, low blood pressure rapid heart rate, weakness, rash, scratchy throat, muscle and bone pain usually 24 hours after drug introduction. " (1)
November 3, 2009
Showed up to the hospital at 7am for blood draws. Saw study doc for this time and then I was whisked up to the room. We found out today we are the hospital for 10 hours (8 hours after treatment.) Had some trouble finding a placement for an IV, but once that was resolved and we got rid of some hair - the EKGs have all gone smooth and the blood draws simple. Blood draw and EKG every hour on the dot and I'm told there are no significant movements in any the tests, which is really good news. I am tolerating the drug very well and feel good so far.
The schedule works like this:
Go in Weds for infusion
Thursdays blood Draw
Fridays Large Blood draw.
Echo on my heart once a month.
CT scan likely once per month.
I'm told I can stay on the study as long as there is no tumor growth.
Well wish me luck. I'll try to post each day to describe any effects I am feeling or if any of my blood numbers.
At 5 pm or so my oncology trial nurse stopped by and warned me at about 6-7 hours I could get chills. Boy was she right.
First I started getting cold and 10 blankets latter was shaking uncontrollably. The time passed and I became incoherent and my finger nails turned blue, once before this happened. Finally after a lot of different doses of drugs they finally gave me Octreotide -500mg and I was better in 5 minutes and on my way home. I told the doc that I expected bad reactions when something is working, because that is the way it has always been. Went home had night sweats and I'm at the docs waiting for latest blood draw and EKG.
Reference
1. Phase I/II Dose Escalaton Study to Determine the Safety, Pmarmaconitecs of Intravenous and Pharmadynamics of Intravenous TKM-080301 with patients with GI-NET and ACC.
I have a rare cancer called Carcinoid and it has spread to my liver and a few other places. During the summer I did a non-chemo embolization and it worked well. My new Doctor at the Universiity of Michigan wanted me to try Xeloda and something else orally for a more systemic treatment - but the requests were turned down flat. I would like to dedicate this page first to my loving wife, my supportive kids and extended family, and finally to Larry - who had signed up for a number of trials when he was alive and contributed a wealth of information to me on the Carinoid Listserv - as well as his loving and wonderful caretaker Linda Silversmith who still to this day participates in the group and adds a lot to the rolling information narrative the group builds.
So, as an alternative, an invitation had been made to join a Phase 1 trial for something called TKM-080301. I was turned down initially, but due to some growth discovered in the late summer/early fall, I was invited back to the University of Michigan to be the last enrollee in the TKM trial.
This is a drug invented by a company called Tekmira Pharmaceuticals Company. It is a study drug and not available (and probably not available until it makes it through the FDA process) to Americans until it is approved. The company is based in Vancouver and specializes in RNA delivery mechanisms.
From materials provided to me:
"TKM-080301 contains a small piece of RNA, called siRNA which is important in reducing a protein called PLK1. PLK1 is present at high levels in dividing cancer cells. In reducing PLK1, TKM may be able to block the cancer cells from dividing. In experiments in the lab with cancer cells in test tubes and mice, TKM has been shown to reduce PLK1 which is important for blocking the division of cancer cells. The study is being done to test the highest level of TKM and what effect is has on you, find the highest dose (currently 1 .75 mg/kg/wk) without causing bad side effects, and find the dose for safer future studies. This also evaluates the TKM is absorbed by your body."
So I read the 28 page document outlining the fact I'd be in the infusion area for 10 hours on the first day which covers all of the side effects and came to the conclusion I really wanted to participate. So the past few weeks have been a whirlwind of tests, pokes and prods and meetings with doctors. I thought I would have to stop taking Sando LAR, however, I don't and that clenched the deal for me.
Phase 1 is important to me because I you do not have the chance of ending up in a "control group" who get a placebo and not the actual drug. I wanted the drug because it sounds like an innovative way they've discovered to perhaps stop Carcinoid Cells from dividing. One of my good friends here on the list said "this sounds like Star Trek." I agree. I hope it works and I hope I get a cure. What the study doctors have told me is the greatest success rates come from Carcinoid patients.
Possible side effects; fever, chills, shortness of breath and low blood pressure. Major side effects is it may briefly injure the liver and spleen. Some animal studies showed a mile but reversible injury to the heart. Temporary reduction of red blood cels or platelets and temporary increase of white blood cells in your body.
As of May 2014, 47 subjects have been treated with TKM. 27 of these have been treated at my same dose of .75mg/kg/wk. One subject died from low blood cells and platelets, although this was thought to be due to tumor spread and growth rather than the drug itself. 9 had changes in spleen size, it may be due to TKM and the way it is intended to work in tumors. In each of these cases the spleen has functioned with no negative side effects. Cytokins in blood may increase and cause fever, chills, low blood pressure rapid heart rate, weakness, rash, scratchy throat, muscle and bone pain usually 24 hours after drug introduction. " (1)
November 3, 2009
Showed up to the hospital at 7am for blood draws. Saw study doc for this time and then I was whisked up to the room. We found out today we are the hospital for 10 hours (8 hours after treatment.) Had some trouble finding a placement for an IV, but once that was resolved and we got rid of some hair - the EKGs have all gone smooth and the blood draws simple. Blood draw and EKG every hour on the dot and I'm told there are no significant movements in any the tests, which is really good news. I am tolerating the drug very well and feel good so far.
The schedule works like this:
Go in Weds for infusion
Thursdays blood Draw
Fridays Large Blood draw.
Echo on my heart once a month.
CT scan likely once per month.
I'm told I can stay on the study as long as there is no tumor growth.
Well wish me luck. I'll try to post each day to describe any effects I am feeling or if any of my blood numbers.
At 5 pm or so my oncology trial nurse stopped by and warned me at about 6-7 hours I could get chills. Boy was she right.
First I started getting cold and 10 blankets latter was shaking uncontrollably. The time passed and I became incoherent and my finger nails turned blue, once before this happened. Finally after a lot of different doses of drugs they finally gave me Octreotide -500mg and I was better in 5 minutes and on my way home. I told the doc that I expected bad reactions when something is working, because that is the way it has always been. Went home had night sweats and I'm at the docs waiting for latest blood draw and EKG.
Reference
1. Phase I/II Dose Escalaton Study to Determine the Safety, Pmarmaconitecs of Intravenous and Pharmadynamics of Intravenous TKM-080301 with patients with GI-NET and ACC.
Subscribe to:
Posts (Atom)