Long term treatment management

jongaw

I was diagnosed with stage 4 cancer with met to lung in year 2007. After my operation in year 1, I have started with my chemo treatment and continuouly doing chemo treatement year after years with chemo break in between 3-6 months depeding of cancer progression. Until this year (year 4) when all the chemo drug failed to control, I am looking for alternative. Is there anyone similar to my situation and what are the drugs used? Any other drug than below that I have used that can be used in my case?

Oxaliplatin
Xeloda
Avastin
Erbitus
UFT
Irinotecan
Mitomycin-c
Raltitrexed (Tomudex)

Buckwirth

Your best bet may be
a clinical trial. Are you currently working with a research hospital? If not, that link may help you find something you qualify for.

tanstaafl

others
In Japan, cimetidine and polysaccharide K have been added to continuous UFT (5FU fused with THF) and DFUR (the active metabolite of capecitabine) for CRC and adenocarcinomas. Since my wife has assay indications of resistance to normal chemo, we are looking at variations of GOLFIG as a backup option, where the assay indicated GEM-5FU-OXI as the only conventional chemos with a cidal response and all the components are available already.

On the other side, the assays indicated either K3 or K2 combined with ascorbate and 5FU chemo might do well. Lots of potential combinations were not tested. We're largely on our own beyond that.

pepebcn

tanstaafl said:

others
In Japan, cimetidine and polysaccharide K have been added to continuous UFT (5FU fused with THF) and DFUR (the active metabolite of capecitabine) for CRC and adenocarcinomas. Since my wife has assay indications of resistance to normal chemo, we are looking at variations of GOLFIG as a backup option, where the assay indicated GEM-5FU-OXI as the only conventional chemos with a cidal response and all the components are available already.

On the other side, the assays indicated either K3 or K2 combined with ascorbate and 5FU chemo might do well. Lots of potential combinations were not tested. We're largely on our own beyond that.

What about start again with the first one, it may work after
two years after first treatment!

lisa42

similar
Hi,

This coming month will also be four years for me since my stage IV rectal diagnosis (w/ numerous mets found right at the time of diagnosis in the liver and both lungs). I've also been on almost nonstop chemo- I had 2 or 3 breaks of between 2-6 months & it's been nonstop chemo now for the past two years now and I'm still going on it.
You've beat me by a couple of chemos- I've never taken Mitomycin, tomudex, or UFT. I've been on one you haven't taken, however- I've been on Gemzar (gemcitabine), 5FU (Xeloda part of the time), and Avastin since March 2010. My last two scans showed a slight amount of growth, but it was still within what they technically consider as stable. I have another scan coming up July 18th & we will see what that shows. I am always looking at what to do next to. The reason I went on the Gemzar was because the Irinotecan along with Xeloda and Avastin failed me (it worked two other times, but the third time I went on it, I had disease progression so they said it wouldn't work for me anymore). At that time, I looked into trying to get in on a clinical trial somewhere, but couldn't get in anywhere. I didn't qualify for most of them due to all the chemos I've already had and/or genetic testing didnt qualify me. I actually found two trials I did qualify for in L.A., but they were both full with a waiting list, so they didn't happen. Going on the Gemzar was based on the opinion of Dr. Lenz from Norris Cancer Center at USC in L.A. He's not my main oncologist, but i have consulted with him 3 times now (I live in north San Diego county, CA & that's where my oncologist is). There were two clinical trials on advanced colorectal patients taking Gemzar and Xeloda. The first study didn't have great results, but the second one had pretty good results & that was what his recommendation was based on. I had talked to my doctors about going back on oxaliplatin again. As much as I dreaded thinking about going on that again because of the side effects, I was willing to do it because that chemo gave me the most tumor shrinkage of all of them. The reason I wasn't put back on it was a combination of fear of more neuropathy and mainly because I had an allergic reaction to it. That reaction happened the very first time I took it, but I was able to continue on taking it by getting first infused with benadryl and steroids, then getting the oxi infusion slowly over six hours. I was able to keep that up until treatment #10, when I had another big allergic reaction in spite of the benadryl, steroids, and slow infusion- so they said no more ever again.
IF you didn't have any allergic reaction to the oxaliplatin, I'd talk to your doctors about trying that again. the oxi is so darn toxic, that I'm personally scared of it, but you do what you have to do, right?!

In February of this year, I sought out a naturopathic doctor to help support my immune system from all the ongoing chemo & also hopefully take something that can also help combat the cancer. Fortunately, my oncologist is a pretty open minded guy who was okay with me doing most of what I was wanting to do (some sauna therapy to detox heavy metals and chemicals in my body and taking several mineral supplements and herbs to boost my immune system, raise my alkaline ph level, and attack the cancer cells). I honestly don't know yet if they are doing anything against my cancer, but I do know that my red blood counts have definitely improved since I started this all. Gemzar's main side effect is that it causes very low platelet levels. Since I started the supplements, I literally have had every weekly blood test show normal levels for my platelets! So, I think that makes it worth doing, as my body can handle the chemo easier.

If you want anymore info on what I'm taking specifically, send me a pm. On a side note, I realized recently that some of my supplements were causing me a great amount of nausea. So I stopped them all for a couple of weeks and am now slowly reintroducing them into my system so I can figure out which ones were causing the nausea. So far, I'm feeling good again.

Take care & best wishes-
Lisa

jongaw

lisa42 said:

similar
Hi,

This coming month will also be four years for me since my stage IV rectal diagnosis (w/ numerous mets found right at the time of diagnosis in the liver and both lungs). I've also been on almost nonstop chemo- I had 2 or 3 breaks of between 2-6 months & it's been nonstop chemo now for the past two years now and I'm still going on it.
You've beat me by a couple of chemos- I've never taken Mitomycin, tomudex, or UFT. I've been on one you haven't taken, however- I've been on Gemzar (gemcitabine), 5FU (Xeloda part of the time), and Avastin since March 2010. My last two scans showed a slight amount of growth, but it was still within what they technically consider as stable. I have another scan coming up July 18th & we will see what that shows. I am always looking at what to do next to. The reason I went on the Gemzar was because the Irinotecan along with Xeloda and Avastin failed me (it worked two other times, but the third time I went on it, I had disease progression so they said it wouldn't work for me anymore). At that time, I looked into trying to get in on a clinical trial somewhere, but couldn't get in anywhere. I didn't qualify for most of them due to all the chemos I've already had and/or genetic testing didnt qualify me. I actually found two trials I did qualify for in L.A., but they were both full with a waiting list, so they didn't happen. Going on the Gemzar was based on the opinion of Dr. Lenz from Norris Cancer Center at USC in L.A. He's not my main oncologist, but i have consulted with him 3 times now (I live in north San Diego county, CA & that's where my oncologist is). There were two clinical trials on advanced colorectal patients taking Gemzar and Xeloda. The first study didn't have great results, but the second one had pretty good results & that was what his recommendation was based on. I had talked to my doctors about going back on oxaliplatin again. As much as I dreaded thinking about going on that again because of the side effects, I was willing to do it because that chemo gave me the most tumor shrinkage of all of them. The reason I wasn't put back on it was a combination of fear of more neuropathy and mainly because I had an allergic reaction to it. That reaction happened the very first time I took it, but I was able to continue on taking it by getting first infused with benadryl and steroids, then getting the oxi infusion slowly over six hours. I was able to keep that up until treatment #10, when I had another big allergic reaction in spite of the benadryl, steroids, and slow infusion- so they said no more ever again.
IF you didn't have any allergic reaction to the oxaliplatin, I'd talk to your doctors about trying that again. the oxi is so darn toxic, that I'm personally scared of it, but you do what you have to do, right?!

In February of this year, I sought out a naturopathic doctor to help support my immune system from all the ongoing chemo & also hopefully take something that can also help combat the cancer. Fortunately, my oncologist is a pretty open minded guy who was okay with me doing most of what I was wanting to do (some sauna therapy to detox heavy metals and chemicals in my body and taking several mineral supplements and herbs to boost my immune system, raise my alkaline ph level, and attack the cancer cells). I honestly don't know yet if they are doing anything against my cancer, but I do know that my red blood counts have definitely improved since I started this all. Gemzar's main side effect is that it causes very low platelet levels. Since I started the supplements, I literally have had every weekly blood test show normal levels for my platelets! So, I think that makes it worth doing, as my body can handle the chemo easier.

If you want anymore info on what I'm taking specifically, send me a pm. On a side note, I realized recently that some of my supplements were causing me a great amount of nausea. So I stopped them all for a couple of weeks and am now slowly reintroducing them into my system so I can figure out which ones were causing the nausea. So far, I'm feeling good again.

Take care & best wishes-
Lisa

Similar
Hi Lisa,
Really appreciate your long & informative email. I will try out Gemzar (gemcitabine), if my new drug tumodex fail me again. I am quite interested in the supplement that you are taking to boost your immune system & maintaining a good plalete count for chemo.

Few days ago, I went for a bone scan, there was a spot shown on my back rib, suspect is another met. I am a bit impatient but I am looking for options to shrink my tumours.

I have 3 big tumours on my lungs measuring about 3.5cm x 4cm.

May I know how long have you being on chemo? Do you have tumours & how big?

Take care & best regards,
Ai Woon

jongaw

lisa42 said:

similar
Hi,

This coming month will also be four years for me since my stage IV rectal diagnosis (w/ numerous mets found right at the time of diagnosis in the liver and both lungs). I've also been on almost nonstop chemo- I had 2 or 3 breaks of between 2-6 months & it's been nonstop chemo now for the past two years now and I'm still going on it.
You've beat me by a couple of chemos- I've never taken Mitomycin, tomudex, or UFT. I've been on one you haven't taken, however- I've been on Gemzar (gemcitabine), 5FU (Xeloda part of the time), and Avastin since March 2010. My last two scans showed a slight amount of growth, but it was still within what they technically consider as stable. I have another scan coming up July 18th & we will see what that shows. I am always looking at what to do next to. The reason I went on the Gemzar was because the Irinotecan along with Xeloda and Avastin failed me (it worked two other times, but the third time I went on it, I had disease progression so they said it wouldn't work for me anymore). At that time, I looked into trying to get in on a clinical trial somewhere, but couldn't get in anywhere. I didn't qualify for most of them due to all the chemos I've already had and/or genetic testing didnt qualify me. I actually found two trials I did qualify for in L.A., but they were both full with a waiting list, so they didn't happen. Going on the Gemzar was based on the opinion of Dr. Lenz from Norris Cancer Center at USC in L.A. He's not my main oncologist, but i have consulted with him 3 times now (I live in north San Diego county, CA & that's where my oncologist is). There were two clinical trials on advanced colorectal patients taking Gemzar and Xeloda. The first study didn't have great results, but the second one had pretty good results & that was what his recommendation was based on. I had talked to my doctors about going back on oxaliplatin again. As much as I dreaded thinking about going on that again because of the side effects, I was willing to do it because that chemo gave me the most tumor shrinkage of all of them. The reason I wasn't put back on it was a combination of fear of more neuropathy and mainly because I had an allergic reaction to it. That reaction happened the very first time I took it, but I was able to continue on taking it by getting first infused with benadryl and steroids, then getting the oxi infusion slowly over six hours. I was able to keep that up until treatment #10, when I had another big allergic reaction in spite of the benadryl, steroids, and slow infusion- so they said no more ever again.
IF you didn't have any allergic reaction to the oxaliplatin, I'd talk to your doctors about trying that again. the oxi is so darn toxic, that I'm personally scared of it, but you do what you have to do, right?!

In February of this year, I sought out a naturopathic doctor to help support my immune system from all the ongoing chemo & also hopefully take something that can also help combat the cancer. Fortunately, my oncologist is a pretty open minded guy who was okay with me doing most of what I was wanting to do (some sauna therapy to detox heavy metals and chemicals in my body and taking several mineral supplements and herbs to boost my immune system, raise my alkaline ph level, and attack the cancer cells). I honestly don't know yet if they are doing anything against my cancer, but I do know that my red blood counts have definitely improved since I started this all. Gemzar's main side effect is that it causes very low platelet levels. Since I started the supplements, I literally have had every weekly blood test show normal levels for my platelets! So, I think that makes it worth doing, as my body can handle the chemo easier.

If you want anymore info on what I'm taking specifically, send me a pm. On a side note, I realized recently that some of my supplements were causing me a great amount of nausea. So I stopped them all for a couple of weeks and am now slowly reintroducing them into my system so I can figure out which ones were causing the nausea. So far, I'm feeling good again.

Take care & best wishes-
Lisa

similar
Hi Lisa,
Thank you for your sharing, really appreciate it. I have completed 2 cycles of Tomudex with Erbitus, after the 1st cycle, my marker has dropped slightly, somehow after 2nd cycle, the marker went up again. I have to stop my chemo now due to my liver function abnormal, the liver enzyme is very high. (ALP:179, ALP:268, AST:111, GGT:234 and I just notice I seem to have jaundice today so it's getting worried. I am also having fever & infection and I was coughing for more than a month. My immunity is also very low, lymphocytes is 14 only. My condition is very unexpectable, when I am recovered I am just like normal but can be down with fever again any time. I started to experience short breathness 1 month ago, I have not really recover due to the flu symptom one after another. I am using oxygen concentrator to improve my oxygen intake.

I really want to strengthen my body, just kind of hard. I am taking quite a lot of supplement to boost my immunity, does not seems to work. I will send you a pm to understand more about your supplement.

Thank you & Best wishes.
Ai Woon