life extension hitting cancer from all sides and my update on my newest therapies

pete43lost_at_sea
pete43lost_at_sea Member Posts: 3,900 Member
edited August 2012 in Colorectal Cancer #1
Some great news from the alternative universe.

Warning this news contains opinions and facts that your oncologist may deem inappropriate, stop reading if this would cause you any distress.

now so you have kept reading great, this lef story is what i am into in principle.

it comes coincidentally just a few days after i committed to the two new alternative therapies below.

multipronged, multimodal. hitting cancer from every concievable angle.

i read this today and thought gee its what i am doing, the theory is the same, so i thought i would share it here so you guys would see that even though my multiproged approach seems crazy and is i agree.

most importantly it is not without scientific and medical merit.

http://www.lef.org/news/LefDailyNews.htm?NewsID=14570&Section=DISEASE&utm_source=DailyHealthBulletin&utm_medium=email&utm_term=Disease&utm_content=Body+ContinueReading&utm_campaign=DHB_120821

just an update on what i am up to.

I still have had a constantly increasing cea over the last 9 months.

i have backed off weightlifting to see if its got anything to do with cancer markers rising.

my focus is back to meditation while managing the business.

still doing gcmaf yogurt and shots.

paused my heavy metal chelation until latest results are back in and reduced the number of enemas.

i am starting some new protocols in the coming weeks, the most interesting is known as tallberg colorectal amino acid therapy. these latest two have nothing to do with lef directly but they are examples of the multi pronged approach.

these are from professor Thomas Tallbergs aminoacid-mineral combinations and is another psorinum.

i am certainly not recommending these as treatments, but am keen to try them, and try them i will.

one day, one of us will find a cure for crc. that day will be a great day.

hugs,
Pete

ps yes i know i may have too many prongs, i am being as careful as possible.
«1

Comments

  • glinka65
    glinka65 Member Posts: 132
    pete
    hey man, send me any and all info you have, got to belive there is better ways than just the chemo, thanks man!!!
  • smokeyjoe
    smokeyjoe Member Posts: 1,425 Member
    glinka65 said:

    pete
    hey man, send me any and all info you have, got to belive there is better ways than just the chemo, thanks man!!!

    I couldn't see what you're
    I couldn't see what you're doing....is there an easier way you could put a link??
  • peterz54
    peterz54 Member Posts: 341
    IGF-1 etc
    pete, I had a prostate cancer scare awhile back and in researching what I could do I came across information suggesting elevated IGF-1 increased chances of prostate cancer. I don't know if this is true of cancer in general, but it seems to me one would not want to increase growth factors. Weight traing increases human growth hormone I believe and might increase IGF-1. Excess dietary protein increases IGF-1 as well. I now try to make sure I have moderate protein intake and more plant based foods. I am working on memory now but when I get a chance I will try to post supportive reference.

    peter
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    smokeyjoe said:

    I couldn't see what you're
    I couldn't see what you're doing....is there an easier way you could put a link??

    Tutorial: Creating Links
    Creating a Link Tutorial...
    Hope this helps. It's really quite easy
  • peterz54
    peterz54 Member Posts: 341
    smokeyjoe said:

    I couldn't see what you're
    I couldn't see what you're doing....is there an easier way you could put a link??

    LEF link
    click on this --> LEF
  • mmadorsk
    mmadorsk Member Posts: 8
    Alternative may be working
    Hi Pete,

    I just wanted to chime in on alternative therapy. My 73-year-old Mom was diagnosed with stage IV colon cancer in March. She just had a fantastic pet scan after 6 rounds of chemo and 2 months of rigorous alternative protocol. Multiple liver lesions disappeared and peritoneal lymph node involvement regressed greatly. Here is what happened and what we've been doing, just in case.

    She had surgery in April to remove a tumor from her colon, but there were multiple mets to liver and peritoneal lymph involvement. While she recovered from surgery her mets grew in size and number, which showed on her second pet scan done two months after her pre-surgery pet scan. Then in June we started chemotherapy -- Avastin, 5FU and Fusilev. The oncologist did not want to mix anything else in because in people over 72, according to our oncologist, oxaliplatin causes neuropathy, which never goes away. At the same time I contacted Mederi Foundation in Oregon that is an herbal clinic run by Donald Yance. I read his book -- "Herbal Medicine, Healing and Cancer" and it made sense to me. Mederi herbalists concocted a huge herbal protocol for us, which they said will interact well with chemo. Our oncologist was against all alternative stuff, so we just did it without discussing it with him and relied on our herbalists' knowledge of chemo drugs and their interaction with herbs.

    Mom had 6 chemo treatments, one every two weeks. She'd be at the infusion center for 3-4 hours and then go home with a pump for 46 hours. After surgery she was anemic with hemoglobin around 10.5. Before surgery she was bleeding internally with hemoglobin of 8, which results in 1 blood transfusion. We had no additional blood transfusions and no drugs to boost her blood counts during chemo. Her latest, post-5th treatment bloodwork showed hemoglobin of 11.6, WBC at 4.5, RBC at 4.36, and PLT at 225. Her liver enzymes have been going up a bit, but still remain within range with ALT 35 and AST 33. I don't know a lot of people whose blood counts remain normal during chemo and I attribute it to the herbs. The only side effects she's had was very moderate diarrhea just a few days after each chemo and 1 or 2 days of fatigue after each treatment. She has type 2 diabetes and chemo made her fasting blood sugar spike for a few days after treatment to 150. But then it would go down to 120-129. She takes 1,000mg of Metformin daily, which we increased recently to 1,500, because controlling blood sugar is key in cancer patients. Also, Metformin's been found to work in synergy with chemo and they've been prescribing it to patients without diabetes!

    She takes around 100 herbal capsules per day, plus an herbal smoothie, herbal suppositories, and castor oil hotpacks on her stomach 3 times a week. I wouldn't even attempt to list all the herbs and minerals here. Her diet excludes all refined sugars and processed foods. It's mainly cruciform veggies, Ezekiel sprouted bread, organic eggs, chicken, turkey, sometimes bone marrow broth from grass fed beef bones, organic chicken liver (high in iron). She also drinks raw goat milk from a trusted local source and eats enzyme-rich raw goat cheeses from the same local place. No cow dairy products, except for home-made cottage cheese from organic cow milk. We mix the cottage cheese (6tbsp) with 3tbsp of Barlean's flax seed oil and 2 tbsp of ground flax seeds and she eats that once a day every day. When mixed with flax oil, cottage cheese loses its lactose properties and is well-tolerated by lactose intolerant people. It's part of the Budwig protocol that we incorporated.

    She also eats lots of organic berries -- blueberries, cherries, strawberries. She drinks 3 oz. of fresh squeezed wheat grass juice almost daily. She does mild exercise -- swimming, bike riding, treadmill -- at least 1-2 hours 5 times a week. She goes to a dry sauna at her YMCA, which isn't super hot -- about 125 degrees -- and sits there for 30 minutes with a 5 minute break in the middle. She goes to acupuncture with a good doctor of Oriental medicine once a week on chemo week, twice a week on off week.

    The best news is this -- her pet scan done after chemo treatment #6 showed disappearance of multiple liver lesions, only 4 tumors left (2 in each lobe), which are less active and growing smaller. And only one bad lymph node left in her peritoneal cavity. Now, maybe it's just the chemo that is doing all that, but she is keeping her immune system intact, which I cannot attribute to chemo. Her cancer is non-differentiated, was growing like crazy after surgery, so I think that maybe all the other stuff is helping it regress, too.

    Her CEA was 3.5 after chemo #1, when things were growing and big, then 5.1 after chemo #4, and 6.2 after chemo #5. This is why we did a pet scan on 22 June to see if CEA is a good marker for her. Apparently, it's not. At this point the oncologist wants to keep doing a reduced doze of chemo (Avastin, 5FU, Fusilev) and run a pet scan around Thanksgiving.

    I don't want to let things go and I feel that now is the time for more action. What I want to do is send Mom's test results to John's Hopkins, which is the most accessible top cancer clinic for us logistically, and see what they say. She may be a candidate for cryoablation, or regular ablation, liver surgery, cytoreductive surgery and HIPEC, or an HAI pump, or theraspheres. I want to see what they say -- they offer virtual consultations for under $1,000, where they will read the pet scan CD and all her bloodwork and provide a treatment plan. They really don't need to see a patient -- just the tests. Now, any invasive treatment will lead us to stop Avastin, because it doesn't let wounds heal. So we have to weigh in that risk.

    I am currently working in Vienna, Austria, so I will be also taking her results to an integrative oncologist here -- dr. Ralf Kleef. He has a hyperthemia clinic, which offers tons of alternative therapies, including full-body hyperthermia, which induces a high fever in a patient, which cancer cells apparently cannot handle and they die. He also offers vitamin C IVs, misletoe injections, Ukrain therapy, phytochemical injections, targeted hyperthermia and other stuff. His clinic offers great diagnostics. He is a medical oncologist who pursues alternative therapies. Usually people come to him as a last resort, but I want to come to him while things are good and see if he can zap Mom's cancer before we even consider invasive treatments like surgery.

    Our path has been an expensive one and did require a lot of advanced googling. I would say I spend about 2k a month on Mom's alternative therapies now and we buy organic food, which runs us another extra $200-$300/month. I am not wealthy, I don't yet own real estate anywhere, only 3 years after grad school, work for federal government. So it's been hard. My Mom's pension is less than the cost of her herbal monthly treatment. For those who are struggling with $$ more than I am, I would suggest a fundraising site giveforward.com, where you can post your story and ask for contributions. People do raise good amounts of money for treatment on that site. Haven't yet tried it, but may look into it soon after I find out how much hyperthermia is :). This is also a good way to non-bluntly ask all of your friends and family to contribute -- you will just provide them with a link to the fundraiser. Sometimes it's easier to do it that way than asking each person for money.

    Wish everyone best of luck and endurance.
    Marina
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    mmadorsk said:

    Alternative may be working
    Hi Pete,

    I just wanted to chime in on alternative therapy. My 73-year-old Mom was diagnosed with stage IV colon cancer in March. She just had a fantastic pet scan after 6 rounds of chemo and 2 months of rigorous alternative protocol. Multiple liver lesions disappeared and peritoneal lymph node involvement regressed greatly. Here is what happened and what we've been doing, just in case.

    She had surgery in April to remove a tumor from her colon, but there were multiple mets to liver and peritoneal lymph involvement. While she recovered from surgery her mets grew in size and number, which showed on her second pet scan done two months after her pre-surgery pet scan. Then in June we started chemotherapy -- Avastin, 5FU and Fusilev. The oncologist did not want to mix anything else in because in people over 72, according to our oncologist, oxaliplatin causes neuropathy, which never goes away. At the same time I contacted Mederi Foundation in Oregon that is an herbal clinic run by Donald Yance. I read his book -- "Herbal Medicine, Healing and Cancer" and it made sense to me. Mederi herbalists concocted a huge herbal protocol for us, which they said will interact well with chemo. Our oncologist was against all alternative stuff, so we just did it without discussing it with him and relied on our herbalists' knowledge of chemo drugs and their interaction with herbs.

    Mom had 6 chemo treatments, one every two weeks. She'd be at the infusion center for 3-4 hours and then go home with a pump for 46 hours. After surgery she was anemic with hemoglobin around 10.5. Before surgery she was bleeding internally with hemoglobin of 8, which results in 1 blood transfusion. We had no additional blood transfusions and no drugs to boost her blood counts during chemo. Her latest, post-5th treatment bloodwork showed hemoglobin of 11.6, WBC at 4.5, RBC at 4.36, and PLT at 225. Her liver enzymes have been going up a bit, but still remain within range with ALT 35 and AST 33. I don't know a lot of people whose blood counts remain normal during chemo and I attribute it to the herbs. The only side effects she's had was very moderate diarrhea just a few days after each chemo and 1 or 2 days of fatigue after each treatment. She has type 2 diabetes and chemo made her fasting blood sugar spike for a few days after treatment to 150. But then it would go down to 120-129. She takes 1,000mg of Metformin daily, which we increased recently to 1,500, because controlling blood sugar is key in cancer patients. Also, Metformin's been found to work in synergy with chemo and they've been prescribing it to patients without diabetes!

    She takes around 100 herbal capsules per day, plus an herbal smoothie, herbal suppositories, and castor oil hotpacks on her stomach 3 times a week. I wouldn't even attempt to list all the herbs and minerals here. Her diet excludes all refined sugars and processed foods. It's mainly cruciform veggies, Ezekiel sprouted bread, organic eggs, chicken, turkey, sometimes bone marrow broth from grass fed beef bones, organic chicken liver (high in iron). She also drinks raw goat milk from a trusted local source and eats enzyme-rich raw goat cheeses from the same local place. No cow dairy products, except for home-made cottage cheese from organic cow milk. We mix the cottage cheese (6tbsp) with 3tbsp of Barlean's flax seed oil and 2 tbsp of ground flax seeds and she eats that once a day every day. When mixed with flax oil, cottage cheese loses its lactose properties and is well-tolerated by lactose intolerant people. It's part of the Budwig protocol that we incorporated.

    She also eats lots of organic berries -- blueberries, cherries, strawberries. She drinks 3 oz. of fresh squeezed wheat grass juice almost daily. She does mild exercise -- swimming, bike riding, treadmill -- at least 1-2 hours 5 times a week. She goes to a dry sauna at her YMCA, which isn't super hot -- about 125 degrees -- and sits there for 30 minutes with a 5 minute break in the middle. She goes to acupuncture with a good doctor of Oriental medicine once a week on chemo week, twice a week on off week.

    The best news is this -- her pet scan done after chemo treatment #6 showed disappearance of multiple liver lesions, only 4 tumors left (2 in each lobe), which are less active and growing smaller. And only one bad lymph node left in her peritoneal cavity. Now, maybe it's just the chemo that is doing all that, but she is keeping her immune system intact, which I cannot attribute to chemo. Her cancer is non-differentiated, was growing like crazy after surgery, so I think that maybe all the other stuff is helping it regress, too.

    Her CEA was 3.5 after chemo #1, when things were growing and big, then 5.1 after chemo #4, and 6.2 after chemo #5. This is why we did a pet scan on 22 June to see if CEA is a good marker for her. Apparently, it's not. At this point the oncologist wants to keep doing a reduced doze of chemo (Avastin, 5FU, Fusilev) and run a pet scan around Thanksgiving.

    I don't want to let things go and I feel that now is the time for more action. What I want to do is send Mom's test results to John's Hopkins, which is the most accessible top cancer clinic for us logistically, and see what they say. She may be a candidate for cryoablation, or regular ablation, liver surgery, cytoreductive surgery and HIPEC, or an HAI pump, or theraspheres. I want to see what they say -- they offer virtual consultations for under $1,000, where they will read the pet scan CD and all her bloodwork and provide a treatment plan. They really don't need to see a patient -- just the tests. Now, any invasive treatment will lead us to stop Avastin, because it doesn't let wounds heal. So we have to weigh in that risk.

    I am currently working in Vienna, Austria, so I will be also taking her results to an integrative oncologist here -- dr. Ralf Kleef. He has a hyperthemia clinic, which offers tons of alternative therapies, including full-body hyperthermia, which induces a high fever in a patient, which cancer cells apparently cannot handle and they die. He also offers vitamin C IVs, misletoe injections, Ukrain therapy, phytochemical injections, targeted hyperthermia and other stuff. His clinic offers great diagnostics. He is a medical oncologist who pursues alternative therapies. Usually people come to him as a last resort, but I want to come to him while things are good and see if he can zap Mom's cancer before we even consider invasive treatments like surgery.

    Our path has been an expensive one and did require a lot of advanced googling. I would say I spend about 2k a month on Mom's alternative therapies now and we buy organic food, which runs us another extra $200-$300/month. I am not wealthy, I don't yet own real estate anywhere, only 3 years after grad school, work for federal government. So it's been hard. My Mom's pension is less than the cost of her herbal monthly treatment. For those who are struggling with $$ more than I am, I would suggest a fundraising site giveforward.com, where you can post your story and ask for contributions. People do raise good amounts of money for treatment on that site. Haven't yet tried it, but may look into it soon after I find out how much hyperthermia is :). This is also a good way to non-bluntly ask all of your friends and family to contribute -- you will just provide them with a link to the fundraiser. Sometimes it's easier to do it that way than asking each person for money.

    Wish everyone best of luck and endurance.
    Marina

    Hi Marina
    I'm glad things are looking pretty good for your Mom. This is an example where the CEA isn't always reliable as far as tracking cancer. I've been doing chemo for very many years and never has my blood counts gone anywhere near the unsafe zone that caused me to skip a treatment.
    I think that some people don't have to worry about it, I don't know why. I do not do any alternatives so that's not the reason it in my case.

    May I ask, had the chemo stopped working and you implemented the herbs and supplements or did you just use them as a way to help prevent potential issues from chemo side effects? It certainly sounds like the dietary changes have helped.

    I know that alternatives can be costly, I like your idea for helping raise monies.
    I'm not sure I understand why the alternatives were used. Had things been looking good with only chemo or were they not good?

    I had a liver resection along with HAI pump therapy almost 8 years ago. They've been successful so far. It's great to see that some doctors are combining treatments and having success. I've alway felt that combining treatments can be helpful. It may be hard to know what actually "cured or helped" them. But the bottom line is how one does.
    Hope things continue well.
    -phil
  • mmadorsk
    mmadorsk Member Posts: 8
    PhillieG said:

    Hi Marina
    I'm glad things are looking pretty good for your Mom. This is an example where the CEA isn't always reliable as far as tracking cancer. I've been doing chemo for very many years and never has my blood counts gone anywhere near the unsafe zone that caused me to skip a treatment.
    I think that some people don't have to worry about it, I don't know why. I do not do any alternatives so that's not the reason it in my case.

    May I ask, had the chemo stopped working and you implemented the herbs and supplements or did you just use them as a way to help prevent potential issues from chemo side effects? It certainly sounds like the dietary changes have helped.

    I know that alternatives can be costly, I like your idea for helping raise monies.
    I'm not sure I understand why the alternatives were used. Had things been looking good with only chemo or were they not good?

    I had a liver resection along with HAI pump therapy almost 8 years ago. They've been successful so far. It's great to see that some doctors are combining treatments and having success. I've alway felt that combining treatments can be helpful. It may be hard to know what actually "cured or helped" them. But the bottom line is how one does.
    Hope things continue well.
    -phil

    Combining traditional and alternative
    Hi Phil,

    thanks for writing! Your 8 year survival is such an inspiration!!! I'm also really happy to hear that you kept your blood counts. May I ask, how are your energy level and overall health?

    I decided to go on herbs right away to help prevent chemo side effects and "reset" the immune system. You sound like a younger person and because Mom is 73, I did not want to take any chances whatsoever. And our oncologist was not adding anything to Avastin, 5FU and Fusilev, because older patients get irreversible side effects from other chemo drugs -- so the treatment was not as aggressive as they do for younger patients. So I wanted to make sure we do something else to fight the cancer and help the immune system. The theory is that herbs don't just control side effects, they help treat cancer. Her cancer was very aggressive, she had multiple lesions that were growing and multiplying fast between surgery and chemo. So I wanted to attack from all fronts and not do the wait and see kind of thing. The amounts of herbs we've been on is massive. Who knows, maybe she'd be just fine on old diet and without the herbs, but I see other older colon patients in our chemo sessions and they are not looking so hot. So I did not want to take any chances.

    I also read that herbs may help prevent recurrence should we get to a remission. But herbs take a long time to build up in the body -- up to 6 months, so I didn't want to lose any time. We've been on them for a little over 2 months and had about 3 months of chemo. Our doc was not actually open to anything but chemo initially and he is against everything alternative, but after her pet scan came out so well after 6 chemo treatments, he did say that we should look into other non-chemo options. So we'll be exploring those options and getting opinions from surgeons, integrative oncologists, and interventional radiologists in the next few weeks. As far as the herbs -- I plan to keep her on them for the rest of her life -- at some point massive amounts may not be needed, so we'll do a "maintenance" regime of some sort.

    Thank you for your good wishes and for being there!
    Marina
  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    mmadorsk said:

    Alternative may be working
    Hi Pete,

    I just wanted to chime in on alternative therapy. My 73-year-old Mom was diagnosed with stage IV colon cancer in March. She just had a fantastic pet scan after 6 rounds of chemo and 2 months of rigorous alternative protocol. Multiple liver lesions disappeared and peritoneal lymph node involvement regressed greatly. Here is what happened and what we've been doing, just in case.

    She had surgery in April to remove a tumor from her colon, but there were multiple mets to liver and peritoneal lymph involvement. While she recovered from surgery her mets grew in size and number, which showed on her second pet scan done two months after her pre-surgery pet scan. Then in June we started chemotherapy -- Avastin, 5FU and Fusilev. The oncologist did not want to mix anything else in because in people over 72, according to our oncologist, oxaliplatin causes neuropathy, which never goes away. At the same time I contacted Mederi Foundation in Oregon that is an herbal clinic run by Donald Yance. I read his book -- "Herbal Medicine, Healing and Cancer" and it made sense to me. Mederi herbalists concocted a huge herbal protocol for us, which they said will interact well with chemo. Our oncologist was against all alternative stuff, so we just did it without discussing it with him and relied on our herbalists' knowledge of chemo drugs and their interaction with herbs.

    Mom had 6 chemo treatments, one every two weeks. She'd be at the infusion center for 3-4 hours and then go home with a pump for 46 hours. After surgery she was anemic with hemoglobin around 10.5. Before surgery she was bleeding internally with hemoglobin of 8, which results in 1 blood transfusion. We had no additional blood transfusions and no drugs to boost her blood counts during chemo. Her latest, post-5th treatment bloodwork showed hemoglobin of 11.6, WBC at 4.5, RBC at 4.36, and PLT at 225. Her liver enzymes have been going up a bit, but still remain within range with ALT 35 and AST 33. I don't know a lot of people whose blood counts remain normal during chemo and I attribute it to the herbs. The only side effects she's had was very moderate diarrhea just a few days after each chemo and 1 or 2 days of fatigue after each treatment. She has type 2 diabetes and chemo made her fasting blood sugar spike for a few days after treatment to 150. But then it would go down to 120-129. She takes 1,000mg of Metformin daily, which we increased recently to 1,500, because controlling blood sugar is key in cancer patients. Also, Metformin's been found to work in synergy with chemo and they've been prescribing it to patients without diabetes!

    She takes around 100 herbal capsules per day, plus an herbal smoothie, herbal suppositories, and castor oil hotpacks on her stomach 3 times a week. I wouldn't even attempt to list all the herbs and minerals here. Her diet excludes all refined sugars and processed foods. It's mainly cruciform veggies, Ezekiel sprouted bread, organic eggs, chicken, turkey, sometimes bone marrow broth from grass fed beef bones, organic chicken liver (high in iron). She also drinks raw goat milk from a trusted local source and eats enzyme-rich raw goat cheeses from the same local place. No cow dairy products, except for home-made cottage cheese from organic cow milk. We mix the cottage cheese (6tbsp) with 3tbsp of Barlean's flax seed oil and 2 tbsp of ground flax seeds and she eats that once a day every day. When mixed with flax oil, cottage cheese loses its lactose properties and is well-tolerated by lactose intolerant people. It's part of the Budwig protocol that we incorporated.

    She also eats lots of organic berries -- blueberries, cherries, strawberries. She drinks 3 oz. of fresh squeezed wheat grass juice almost daily. She does mild exercise -- swimming, bike riding, treadmill -- at least 1-2 hours 5 times a week. She goes to a dry sauna at her YMCA, which isn't super hot -- about 125 degrees -- and sits there for 30 minutes with a 5 minute break in the middle. She goes to acupuncture with a good doctor of Oriental medicine once a week on chemo week, twice a week on off week.

    The best news is this -- her pet scan done after chemo treatment #6 showed disappearance of multiple liver lesions, only 4 tumors left (2 in each lobe), which are less active and growing smaller. And only one bad lymph node left in her peritoneal cavity. Now, maybe it's just the chemo that is doing all that, but she is keeping her immune system intact, which I cannot attribute to chemo. Her cancer is non-differentiated, was growing like crazy after surgery, so I think that maybe all the other stuff is helping it regress, too.

    Her CEA was 3.5 after chemo #1, when things were growing and big, then 5.1 after chemo #4, and 6.2 after chemo #5. This is why we did a pet scan on 22 June to see if CEA is a good marker for her. Apparently, it's not. At this point the oncologist wants to keep doing a reduced doze of chemo (Avastin, 5FU, Fusilev) and run a pet scan around Thanksgiving.

    I don't want to let things go and I feel that now is the time for more action. What I want to do is send Mom's test results to John's Hopkins, which is the most accessible top cancer clinic for us logistically, and see what they say. She may be a candidate for cryoablation, or regular ablation, liver surgery, cytoreductive surgery and HIPEC, or an HAI pump, or theraspheres. I want to see what they say -- they offer virtual consultations for under $1,000, where they will read the pet scan CD and all her bloodwork and provide a treatment plan. They really don't need to see a patient -- just the tests. Now, any invasive treatment will lead us to stop Avastin, because it doesn't let wounds heal. So we have to weigh in that risk.

    I am currently working in Vienna, Austria, so I will be also taking her results to an integrative oncologist here -- dr. Ralf Kleef. He has a hyperthemia clinic, which offers tons of alternative therapies, including full-body hyperthermia, which induces a high fever in a patient, which cancer cells apparently cannot handle and they die. He also offers vitamin C IVs, misletoe injections, Ukrain therapy, phytochemical injections, targeted hyperthermia and other stuff. His clinic offers great diagnostics. He is a medical oncologist who pursues alternative therapies. Usually people come to him as a last resort, but I want to come to him while things are good and see if he can zap Mom's cancer before we even consider invasive treatments like surgery.

    Our path has been an expensive one and did require a lot of advanced googling. I would say I spend about 2k a month on Mom's alternative therapies now and we buy organic food, which runs us another extra $200-$300/month. I am not wealthy, I don't yet own real estate anywhere, only 3 years after grad school, work for federal government. So it's been hard. My Mom's pension is less than the cost of her herbal monthly treatment. For those who are struggling with $$ more than I am, I would suggest a fundraising site giveforward.com, where you can post your story and ask for contributions. People do raise good amounts of money for treatment on that site. Haven't yet tried it, but may look into it soon after I find out how much hyperthermia is :). This is also a good way to non-bluntly ask all of your friends and family to contribute -- you will just provide them with a link to the fundraiser. Sometimes it's easier to do it that way than asking each person for money.

    Wish everyone best of luck and endurance.
    Marina

    thoughts
    Thanks for your mom's experience, Marina. Good to see the metformin experience noted, too.

    My wife has not done her juicing, but has built up her blood into the normal range with livers alone - chicken liver and even canned Liverwurst, while on continuous chemo. Btw if your mom visits near Italy, UFT (tegafur uracil) may be available there, lots of Italian UFT papers. Don't know about Austria, some UFT related participation in papers.

    Fusilev is extremely expensive in the US. Oral leucovorin is delivered selectively as active leucovorin to the bloodstream, as well as convenient at daily low doses, lower than "standard" oral LV treatments.

    My wife's treatment is ongoing since it appears she still has low level CEA activity within the "normal range". It takes a lot of variety to keep the CEA stable or declining, even a temporary ceasation of an important ingredient can cause a rapid CEA spike. We developed a large amount of closely spaced blood data to make biomarkers more interpretable with other events like med changes.

    I don't want to let things go and I feel that now is the time for more action.
    We felt this way too, that early efforts and changes are more likely to effect major improvements in outcome than later.

    It would be nice to compare which herbs.
  • mmadorsk
    mmadorsk Member Posts: 8
    tanstaafl said:

    thoughts
    Thanks for your mom's experience, Marina. Good to see the metformin experience noted, too.

    My wife has not done her juicing, but has built up her blood into the normal range with livers alone - chicken liver and even canned Liverwurst, while on continuous chemo. Btw if your mom visits near Italy, UFT (tegafur uracil) may be available there, lots of Italian UFT papers. Don't know about Austria, some UFT related participation in papers.

    Fusilev is extremely expensive in the US. Oral leucovorin is delivered selectively as active leucovorin to the bloodstream, as well as convenient at daily low doses, lower than "standard" oral LV treatments.

    My wife's treatment is ongoing since it appears she still has low level CEA activity within the "normal range". It takes a lot of variety to keep the CEA stable or declining, even a temporary ceasation of an important ingredient can cause a rapid CEA spike. We developed a large amount of closely spaced blood data to make biomarkers more interpretable with other events like med changes.

    I don't want to let things go and I feel that now is the time for more action.
    We felt this way too, that early efforts and changes are more likely to effect major improvements in outcome than later.

    It would be nice to compare which herbs.

    thank you for your thoughts
    Thanks a lot Tanstaafl (didn't see your name, sorry!). Mom's insurance covers fusilev, so that's what we are on. Thankfully our traditional medicine's been covered, so we've only been paying for the alternative stuff.

    We are also not doing juicing, because it's good to just eat fruit and veggies and get all the fiber. Wheat grass juice we've been getting at a health store nearby. They juice it for us -- a lot less mess.

    I will look into UFT for sure! Thank you!!!

    I hope things continue to go well for your wife.
    Marina
  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    mmadorsk said:

    thank you for your thoughts
    Thanks a lot Tanstaafl (didn't see your name, sorry!). Mom's insurance covers fusilev, so that's what we are on. Thankfully our traditional medicine's been covered, so we've only been paying for the alternative stuff.

    We are also not doing juicing, because it's good to just eat fruit and veggies and get all the fiber. Wheat grass juice we've been getting at a health store nearby. They juice it for us -- a lot less mess.

    I will look into UFT for sure! Thank you!!!

    I hope things continue to go well for your wife.
    Marina

    you're welcome
    Our story summary can be clicked at "tanstaafl". Our experience might be useful for a longer term view of integrative chemo without the nasty parts.
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    mmadorsk said:

    Combining traditional and alternative
    Hi Phil,

    thanks for writing! Your 8 year survival is such an inspiration!!! I'm also really happy to hear that you kept your blood counts. May I ask, how are your energy level and overall health?

    I decided to go on herbs right away to help prevent chemo side effects and "reset" the immune system. You sound like a younger person and because Mom is 73, I did not want to take any chances whatsoever. And our oncologist was not adding anything to Avastin, 5FU and Fusilev, because older patients get irreversible side effects from other chemo drugs -- so the treatment was not as aggressive as they do for younger patients. So I wanted to make sure we do something else to fight the cancer and help the immune system. The theory is that herbs don't just control side effects, they help treat cancer. Her cancer was very aggressive, she had multiple lesions that were growing and multiplying fast between surgery and chemo. So I wanted to attack from all fronts and not do the wait and see kind of thing. The amounts of herbs we've been on is massive. Who knows, maybe she'd be just fine on old diet and without the herbs, but I see other older colon patients in our chemo sessions and they are not looking so hot. So I did not want to take any chances.

    I also read that herbs may help prevent recurrence should we get to a remission. But herbs take a long time to build up in the body -- up to 6 months, so I didn't want to lose any time. We've been on them for a little over 2 months and had about 3 months of chemo. Our doc was not actually open to anything but chemo initially and he is against everything alternative, but after her pet scan came out so well after 6 chemo treatments, he did say that we should look into other non-chemo options. So we'll be exploring those options and getting opinions from surgeons, integrative oncologists, and interventional radiologists in the next few weeks. As far as the herbs -- I plan to keep her on them for the rest of her life -- at some point massive amounts may not be needed, so we'll do a "maintenance" regime of some sort.

    Thank you for your good wishes and for being there!
    Marina

    Hi Marina
    My energy is good with the exception of 2-3 days after chemo which I'm currently getting every two weeks. I tend to want to sleep more, so I do! Otherwise, I'm active with few if any problems. I'm almost 55 so I do get tired. My overall health is also good. There are no issues at all that keep me from living a normal life. I'm living with cancer and dealing with it as more of a chronic disease.

    I do get small tumors in my lung(s) that I have ablated about once a year. I've been doing those for the past 4-5 years with my last RFA a little over a week ago, in/out the same day. Running around doing errands for 6 hours the next day. I could have used the rest but things had to be done.

    I think it's great that you were proactive with your Mom's care. I have no doubt that the things you are doing are making your Mom's treatments easier on her. You seem to be agressive in your treatment, but also taking your Mom's age into consideration. That's great and smart. I went with agressive at the start but I was (only...) 46 and was very up for it. Fortunately, new treatment options came out at the right time. Avastin in Feb/March 2004 and Erbitux a year or two later. The Avastin shrunk my liver tumors so I became operable and Erbitux came out which helps slow/stop the growth of lung tumors. The side effects are minimal and totally manageable.
    Continued success and welcome to the site.
    -phil
  • luvinlife2
    luvinlife2 Member Posts: 172 Member
    Again, thanks Pete :)
    Always love to see more info. I'm glad that you've cut back on the enemas if only for the reason that I worry your system will become dependent on them.

    I'll check out the links you provided and good luck eh? :)

    Marina...Thank you so much for your detailed post. Your Mom is so lucky to have a daughter who takes such good care of her. I also take Metphormine but lower dosage 500mg/day (1/2 a tab at am and pm). I don't have diabetes either but it is used for the same reasons as you described. I do Vit C IV's, Iscador, Avemar and MCP. I have done the full body hyperthermia (machine from Germany) and it was very successful in stopping my rising CEA. In fact, my CEA dropped from 47 to 24. I've also done local oncothermia treatments, all of which have helped keep my cancer from progressing. It is very expensive and hard on the budget.

    I think the dietary changes help immensely. It's hard to do when you are first diagnosed and recovering from surgery, starting chemo, etc. It's all too much...but once things have settled down a bit, making some changes is worth the effort. Keep us posted on how your Mom is doing, ok?

    Kathy :)
  • mmadorsk
    mmadorsk Member Posts: 8

    Again, thanks Pete :)
    Always love to see more info. I'm glad that you've cut back on the enemas if only for the reason that I worry your system will become dependent on them.

    I'll check out the links you provided and good luck eh? :)

    Marina...Thank you so much for your detailed post. Your Mom is so lucky to have a daughter who takes such good care of her. I also take Metphormine but lower dosage 500mg/day (1/2 a tab at am and pm). I don't have diabetes either but it is used for the same reasons as you described. I do Vit C IV's, Iscador, Avemar and MCP. I have done the full body hyperthermia (machine from Germany) and it was very successful in stopping my rising CEA. In fact, my CEA dropped from 47 to 24. I've also done local oncothermia treatments, all of which have helped keep my cancer from progressing. It is very expensive and hard on the budget.

    I think the dietary changes help immensely. It's hard to do when you are first diagnosed and recovering from surgery, starting chemo, etc. It's all too much...but once things have settled down a bit, making some changes is worth the effort. Keep us posted on how your Mom is doing, ok?

    Kathy :)

    Will do, Kathy
    Thanks for your comments and sharing your experience Kathy.

    It's good to know that hyperthermia does help! I want to give Iscador and Vitamin C a try. We now have to negotiate not just with our oncologist but with the herbalists, too, who can be as "conservative" in their own right. They seem to think that eating herbs is better than injecting stuff. But now that things are good and tumors are shrinking and disappearing from Mom's liver, maybe it's time to do a crash alternative treatment? It's so hard to know when health providers refuse to agree with each other's treatments. One has to make one's own treatment decisions and when it's a matter of life or death, it's not easy. I'll see the Austrian integrative oncologist within the next two weeks and I will post what he recommends. And getting John's Hopkins' surgeons and integrative radiologists to chime in will be helpful.

    As far as dietary changes and taking about 100 herbal capsules and a smoothie that tastes like s@#$ was not easy. I took 3 months off work and had to do some heavy convincing, begging and pleading. Mom just wanted to do chemo and be left alone. But she gave in and her continued well-being, next to no side effects, and her latest pet scan finally have her convinced. I think :).

    Thanks again and all the very best to you!
    Marina
  • mmadorsk
    mmadorsk Member Posts: 8
    PhillieG said:

    Hi Marina
    My energy is good with the exception of 2-3 days after chemo which I'm currently getting every two weeks. I tend to want to sleep more, so I do! Otherwise, I'm active with few if any problems. I'm almost 55 so I do get tired. My overall health is also good. There are no issues at all that keep me from living a normal life. I'm living with cancer and dealing with it as more of a chronic disease.

    I do get small tumors in my lung(s) that I have ablated about once a year. I've been doing those for the past 4-5 years with my last RFA a little over a week ago, in/out the same day. Running around doing errands for 6 hours the next day. I could have used the rest but things had to be done.

    I think it's great that you were proactive with your Mom's care. I have no doubt that the things you are doing are making your Mom's treatments easier on her. You seem to be agressive in your treatment, but also taking your Mom's age into consideration. That's great and smart. I went with agressive at the start but I was (only...) 46 and was very up for it. Fortunately, new treatment options came out at the right time. Avastin in Feb/March 2004 and Erbitux a year or two later. The Avastin shrunk my liver tumors so I became operable and Erbitux came out which helps slow/stop the growth of lung tumors. The side effects are minimal and totally manageable.
    Continued success and welcome to the site.
    -phil

    Thanks Phil!
    It's great to hear that ablation works and that it's not too tough on the body. Mom may be a good candidate with her 4 remaining liver lesions. She had so many tumors in the liver just 2 months ago that she was not a candidate. I wonder if ablation is a better therapy than liver surgery. She has 2 tumors in each lobe and they are getting smaller, so surgery may not yet be an option. I am very tempted to continue giving the herbs more time and see if they and chemo shrink things further. Our herbalists keep telling us that herbs do treat as well as minimize side effects and prevent spread... But now at least we have options, while at first chemo (and alternatives) were our only option.

    Wishing you continued success, too!!!!
    Marina
  • lepperl
    lepperl Member Posts: 39
    update
    Thanks for the update. Either you or tanstaafl are gonna figure this out one day I know it. I posted a quote n colon club today and I think it applies here: "Don't be afraid to try something new, remember amateurs built the ark, professionals built the titanic" This is not for anyone to think doctors can't help. They are just trapped by their profession sometimes.
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    lepperl said:

    update
    Thanks for the update. Either you or tanstaafl are gonna figure this out one day I know it. I posted a quote n colon club today and I think it applies here: "Don't be afraid to try something new, remember amateurs built the ark, professionals built the titanic" This is not for anyone to think doctors can't help. They are just trapped by their profession sometimes.

    thanks lepperl
    I really needed that today of all days.
    If we each save our own butt.
    And inspire one Friend here to do the same.
    That's enough for now, baby steps.

    Tans has a light chemo that seems good.

    Before I go there I am giving extreme none chemo alts a chance to shine.

    Hugs,
    Pete

    Ps thanks for peacefully sharing and everyone's comments.
  • manwithnoname
    manwithnoname Member Posts: 402
    mmadorsk said:

    Alternative may be working
    Hi Pete,

    I just wanted to chime in on alternative therapy. My 73-year-old Mom was diagnosed with stage IV colon cancer in March. She just had a fantastic pet scan after 6 rounds of chemo and 2 months of rigorous alternative protocol. Multiple liver lesions disappeared and peritoneal lymph node involvement regressed greatly. Here is what happened and what we've been doing, just in case.

    She had surgery in April to remove a tumor from her colon, but there were multiple mets to liver and peritoneal lymph involvement. While she recovered from surgery her mets grew in size and number, which showed on her second pet scan done two months after her pre-surgery pet scan. Then in June we started chemotherapy -- Avastin, 5FU and Fusilev. The oncologist did not want to mix anything else in because in people over 72, according to our oncologist, oxaliplatin causes neuropathy, which never goes away. At the same time I contacted Mederi Foundation in Oregon that is an herbal clinic run by Donald Yance. I read his book -- "Herbal Medicine, Healing and Cancer" and it made sense to me. Mederi herbalists concocted a huge herbal protocol for us, which they said will interact well with chemo. Our oncologist was against all alternative stuff, so we just did it without discussing it with him and relied on our herbalists' knowledge of chemo drugs and their interaction with herbs.

    Mom had 6 chemo treatments, one every two weeks. She'd be at the infusion center for 3-4 hours and then go home with a pump for 46 hours. After surgery she was anemic with hemoglobin around 10.5. Before surgery she was bleeding internally with hemoglobin of 8, which results in 1 blood transfusion. We had no additional blood transfusions and no drugs to boost her blood counts during chemo. Her latest, post-5th treatment bloodwork showed hemoglobin of 11.6, WBC at 4.5, RBC at 4.36, and PLT at 225. Her liver enzymes have been going up a bit, but still remain within range with ALT 35 and AST 33. I don't know a lot of people whose blood counts remain normal during chemo and I attribute it to the herbs. The only side effects she's had was very moderate diarrhea just a few days after each chemo and 1 or 2 days of fatigue after each treatment. She has type 2 diabetes and chemo made her fasting blood sugar spike for a few days after treatment to 150. But then it would go down to 120-129. She takes 1,000mg of Metformin daily, which we increased recently to 1,500, because controlling blood sugar is key in cancer patients. Also, Metformin's been found to work in synergy with chemo and they've been prescribing it to patients without diabetes!

    She takes around 100 herbal capsules per day, plus an herbal smoothie, herbal suppositories, and castor oil hotpacks on her stomach 3 times a week. I wouldn't even attempt to list all the herbs and minerals here. Her diet excludes all refined sugars and processed foods. It's mainly cruciform veggies, Ezekiel sprouted bread, organic eggs, chicken, turkey, sometimes bone marrow broth from grass fed beef bones, organic chicken liver (high in iron). She also drinks raw goat milk from a trusted local source and eats enzyme-rich raw goat cheeses from the same local place. No cow dairy products, except for home-made cottage cheese from organic cow milk. We mix the cottage cheese (6tbsp) with 3tbsp of Barlean's flax seed oil and 2 tbsp of ground flax seeds and she eats that once a day every day. When mixed with flax oil, cottage cheese loses its lactose properties and is well-tolerated by lactose intolerant people. It's part of the Budwig protocol that we incorporated.

    She also eats lots of organic berries -- blueberries, cherries, strawberries. She drinks 3 oz. of fresh squeezed wheat grass juice almost daily. She does mild exercise -- swimming, bike riding, treadmill -- at least 1-2 hours 5 times a week. She goes to a dry sauna at her YMCA, which isn't super hot -- about 125 degrees -- and sits there for 30 minutes with a 5 minute break in the middle. She goes to acupuncture with a good doctor of Oriental medicine once a week on chemo week, twice a week on off week.

    The best news is this -- her pet scan done after chemo treatment #6 showed disappearance of multiple liver lesions, only 4 tumors left (2 in each lobe), which are less active and growing smaller. And only one bad lymph node left in her peritoneal cavity. Now, maybe it's just the chemo that is doing all that, but she is keeping her immune system intact, which I cannot attribute to chemo. Her cancer is non-differentiated, was growing like crazy after surgery, so I think that maybe all the other stuff is helping it regress, too.

    Her CEA was 3.5 after chemo #1, when things were growing and big, then 5.1 after chemo #4, and 6.2 after chemo #5. This is why we did a pet scan on 22 June to see if CEA is a good marker for her. Apparently, it's not. At this point the oncologist wants to keep doing a reduced doze of chemo (Avastin, 5FU, Fusilev) and run a pet scan around Thanksgiving.

    I don't want to let things go and I feel that now is the time for more action. What I want to do is send Mom's test results to John's Hopkins, which is the most accessible top cancer clinic for us logistically, and see what they say. She may be a candidate for cryoablation, or regular ablation, liver surgery, cytoreductive surgery and HIPEC, or an HAI pump, or theraspheres. I want to see what they say -- they offer virtual consultations for under $1,000, where they will read the pet scan CD and all her bloodwork and provide a treatment plan. They really don't need to see a patient -- just the tests. Now, any invasive treatment will lead us to stop Avastin, because it doesn't let wounds heal. So we have to weigh in that risk.

    I am currently working in Vienna, Austria, so I will be also taking her results to an integrative oncologist here -- dr. Ralf Kleef. He has a hyperthemia clinic, which offers tons of alternative therapies, including full-body hyperthermia, which induces a high fever in a patient, which cancer cells apparently cannot handle and they die. He also offers vitamin C IVs, misletoe injections, Ukrain therapy, phytochemical injections, targeted hyperthermia and other stuff. His clinic offers great diagnostics. He is a medical oncologist who pursues alternative therapies. Usually people come to him as a last resort, but I want to come to him while things are good and see if he can zap Mom's cancer before we even consider invasive treatments like surgery.

    Our path has been an expensive one and did require a lot of advanced googling. I would say I spend about 2k a month on Mom's alternative therapies now and we buy organic food, which runs us another extra $200-$300/month. I am not wealthy, I don't yet own real estate anywhere, only 3 years after grad school, work for federal government. So it's been hard. My Mom's pension is less than the cost of her herbal monthly treatment. For those who are struggling with $$ more than I am, I would suggest a fundraising site giveforward.com, where you can post your story and ask for contributions. People do raise good amounts of money for treatment on that site. Haven't yet tried it, but may look into it soon after I find out how much hyperthermia is :). This is also a good way to non-bluntly ask all of your friends and family to contribute -- you will just provide them with a link to the fundraiser. Sometimes it's easier to do it that way than asking each person for money.

    Wish everyone best of luck and endurance.
    Marina

    Not sure about the Iron
    We were using Artemesinin that chelates iron, reason here; http://www.ncbi.nlm.nih.gov/pubmed/8664805

    Where are the HTML functions to put live links?
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member

    Not sure about the Iron
    We were using Artemesinin that chelates iron, reason here; http://www.ncbi.nlm.nih.gov/pubmed/8664805

    Where are the HTML functions to put live links?

    A friend gave me the slide
    A friend gave me the slide show from a uni presentation, its the best on artemisinin i found.

    let me know what you think.

    https://docs.google.com/present/view?id=dc92p8z2_09d4fdgds

    it goes over iron, what type, when , why.

    vit c benefits,

    in a nutshell it says to have pleasant exercise in the evenings and then artemisinin.

    its a worthwhile cancer therapy on the off chance you get lucky, its possibly so good.

    i am upping my shots to 4 per week, to see how it goes, and also bumping up the exercise again gently.

    hugs,
    Pete
  • manwithnoname
    manwithnoname Member Posts: 402

    A friend gave me the slide
    A friend gave me the slide show from a uni presentation, its the best on artemisinin i found.

    let me know what you think.

    https://docs.google.com/present/view?id=dc92p8z2_09d4fdgds

    it goes over iron, what type, when , why.

    vit c benefits,

    in a nutshell it says to have pleasant exercise in the evenings and then artemisinin.

    its a worthwhile cancer therapy on the off chance you get lucky, its possibly so good.

    i am upping my shots to 4 per week, to see how it goes, and also bumping up the exercise again gently.

    hugs,
    Pete

    Hi Pete
    Hope you had a good trip, I was emailing the same Prof. from Washington, he cleared up lots of questions I had about dosage and action. He also mentioned combining with Butrayte which we never did (just too many pills at the time)

    Today we had to go to school and pick up our son, he threw up, too many new medicines I think ( I hope!) so we are cutting back to NDV + valproic acid then VP16 twice a week.

    I feel we are running out of time.

    I think the ART compounds are really worth investigating. Where do you get injectables?