Are there any other MMMT survivors out there?
Comments
-
My Suggestionskimberlite said:mmmt with rhabvdoid cells
In November 2009 my wife noticed spotting and went to her ob/gyn. She was 68 at the time.
she was diagnosed by biopsy with uterine cancer..
She was referred to Mt Sinai Hospital and met with the head of the oncology gynacology department.
in early December she has surgery and her uteris , ovaries and about 12 lymph nodes removed.
After biopsy they found mmmt cancer with rhabdoid cells in 95 percent of her uteris and 7 lymph nodes, Stage 3
In January She then went through 6 rounds of chemo each lasting 24 hours for 4 days each of taxol and isofosomide,plus a number of preventative drugs. the on the 5th day she received an injection ( iforgot the name) it increases her white blood cells very painful and costs $4500- for the one injection, thank god for medicare.
in July she finished her Chemo and had another pet scan, more lymph nodes were hot. she then went through 25 rounds of radiation and internal radion, the new type of focused radiation. 4 months later her pet scan was clean. that was about march 2011.
We were so happy it was clean.
Unfortunately last week after 5 months later there are now 5 new lymph nodes that are hot and something on her bladder.
She is beside herself as she does not want to lose her hair again and suffer tyhrough chemo this time of taxol and carbol(sp).
anyone had this experience? Any suggesdtion?
Thanks
Kimberlite
Dear Kimberlite,
Am so sorry to hear of your wife's diagnosis and ordeal.
Would like to offer a hint of hope here: and that is that taxol and carboplatin should be an EASIER chemo regime than the one she last had. (My own onc told me that ifosamide is definitely "harder on you" than carboplatin and taxol.)
I myself have had five rounds of carbo/taxol and so far--I am not exaggerating--NO side effects.
Of course your wife has already been a bit debilitated by a prior chemo regimen so I won't pretend that may not play some role in her response to upcoming treatment. (But I too, by the way, had 25 external radiation treatments of my pelvis after the first three rounds of chemo--and still had no side effects from the fourth and fifth rounds of chemo.)
If it's fear of her chemo that's the main problem right now, here's what I'd recommend.
If she can see an integrative doctor who will prescribe a few supplements for her, your med insurance will pay for office visits
if not for the supplements.
What my integrative doctor prescribed during treatment with taxol/carbo were the following--all availalbe online, by the way.
1) glutamine (a white powdery amino acid), inexpensive
one teaspoon, three times a day, in a glass of water before meals. Start a day before chemo and continue first three days OF chemo. Helps to prevent neuropathy in hands and feet and protects intestines from the chemo
2) fish oil (two to three teaspoons a day AFTER meals) (best brand "Finest Fish Oil by Pharmax)
Helps to protect the intestines and prevent appetite loss. This brand has NO fishy flavor at all! Orange is in it to prevent that.
Research also shows that fish oil helps the taxol to work more effectively!
3) ProGreens (comes in a jar, refrigerate after opening)
Take one scoop each morning before breakfast in a glass of water. Don't let the green color deceive you; it does not taste bad at all. Not good, but not bad! And it's a powerhouse of protective ingredients that fortifies your system against the assaults of chemo. Helps to prevent that horrible constipation most experience during chemo and protects intestines.
If your wife can't eat a lot of green vegetables during chemo, this supplement will supply her with all the nutrients she needs that come from greens!
4) Two multivitamins a day (one, twice a day with meals) - brand, "Nutrient 950" (contains no copper or iron which many researchers believe promote metastasis). Available online and not too expensive. Once she's done chemo and treatment, take two, three times a day.
5) AHCC (two capsules three times a day or three twice a day) brand Protocols for Life.
This is a mushroom extract given to nearly all chemo patients in Japan. Helps soften the effects of chemo and bolsters your killer T-cells (the ones that attack cancer). Problem: it IS expensive: eighty dollars a bottle, and at this dosage, you'd need three bottles a month. You could lower dose to four a day to ease the expense. If you dont take AHCC, you could try Maitake D fraction (half as expensive).
6) Optional: 200 to 400 mgs of vitamin E succinate a day (esp if you fear or are develoopoing numbness or tingling in the extremities).
With just these supplements, I went through five rounds of carbo/taxol with nearly NO side effects: no vomiting, not even nausea, no numbness or tingling in hands and feet, no mouth sores, not even much fatigue.
Finally: While on taxol your wife MUST, in my opinion, take curcumin. Best brand is probably Life Extension's Bio Super Curcumin. She should take two capsules a day WITH meals. Why essential? To prevent an inflammatory response to taxol and to help taxol to work better. There's been some rsearch from Dr. Aggarwal, of MD Anderson about the danger that taxol may, while very good at eliminating any current tumors, may "spread" a few microscopic cells throughout the body; curcumin, his research shows, has been shown to prevent that from happening.
Finally: Please refer to my post under "best books read" near the top of the subject index; I"ve just listed some that were most valuable.
And do take some heart: there HAVE been patients even with Stage IIIC cancer of your wife's sort that have survived far longer than predicted.
Best,
Rosey0 -
mmmt and new drug PazopanibRoseyR said:My Suggestions
Dear Kimberlite,
Am so sorry to hear of your wife's diagnosis and ordeal.
Would like to offer a hint of hope here: and that is that taxol and carboplatin should be an EASIER chemo regime than the one she last had. (My own onc told me that ifosamide is definitely "harder on you" than carboplatin and taxol.)
I myself have had five rounds of carbo/taxol and so far--I am not exaggerating--NO side effects.
Of course your wife has already been a bit debilitated by a prior chemo regimen so I won't pretend that may not play some role in her response to upcoming treatment. (But I too, by the way, had 25 external radiation treatments of my pelvis after the first three rounds of chemo--and still had no side effects from the fourth and fifth rounds of chemo.)
If it's fear of her chemo that's the main problem right now, here's what I'd recommend.
If she can see an integrative doctor who will prescribe a few supplements for her, your med insurance will pay for office visits
if not for the supplements.
What my integrative doctor prescribed during treatment with taxol/carbo were the following--all availalbe online, by the way.
1) glutamine (a white powdery amino acid), inexpensive
one teaspoon, three times a day, in a glass of water before meals. Start a day before chemo and continue first three days OF chemo. Helps to prevent neuropathy in hands and feet and protects intestines from the chemo
2) fish oil (two to three teaspoons a day AFTER meals) (best brand "Finest Fish Oil by Pharmax)
Helps to protect the intestines and prevent appetite loss. This brand has NO fishy flavor at all! Orange is in it to prevent that.
Research also shows that fish oil helps the taxol to work more effectively!
3) ProGreens (comes in a jar, refrigerate after opening)
Take one scoop each morning before breakfast in a glass of water. Don't let the green color deceive you; it does not taste bad at all. Not good, but not bad! And it's a powerhouse of protective ingredients that fortifies your system against the assaults of chemo. Helps to prevent that horrible constipation most experience during chemo and protects intestines.
If your wife can't eat a lot of green vegetables during chemo, this supplement will supply her with all the nutrients she needs that come from greens!
4) Two multivitamins a day (one, twice a day with meals) - brand, "Nutrient 950" (contains no copper or iron which many researchers believe promote metastasis). Available online and not too expensive. Once she's done chemo and treatment, take two, three times a day.
5) AHCC (two capsules three times a day or three twice a day) brand Protocols for Life.
This is a mushroom extract given to nearly all chemo patients in Japan. Helps soften the effects of chemo and bolsters your killer T-cells (the ones that attack cancer). Problem: it IS expensive: eighty dollars a bottle, and at this dosage, you'd need three bottles a month. You could lower dose to four a day to ease the expense. If you dont take AHCC, you could try Maitake D fraction (half as expensive).
6) Optional: 200 to 400 mgs of vitamin E succinate a day (esp if you fear or are develoopoing numbness or tingling in the extremities).
With just these supplements, I went through five rounds of carbo/taxol with nearly NO side effects: no vomiting, not even nausea, no numbness or tingling in hands and feet, no mouth sores, not even much fatigue.
Finally: While on taxol your wife MUST, in my opinion, take curcumin. Best brand is probably Life Extension's Bio Super Curcumin. She should take two capsules a day WITH meals. Why essential? To prevent an inflammatory response to taxol and to help taxol to work better. There's been some rsearch from Dr. Aggarwal, of MD Anderson about the danger that taxol may, while very good at eliminating any current tumors, may "spread" a few microscopic cells throughout the body; curcumin, his research shows, has been shown to prevent that from happening.
Finally: Please refer to my post under "best books read" near the top of the subject index; I"ve just listed some that were most valuable.
And do take some heart: there HAVE been patients even with Stage IIIC cancer of your wife's sort that have survived far longer than predicted.
Best,
Rosey
Has anyone heard of the phase 2 clinical trial of this drug
at Colorodo State or Sloan Kettering?
thanks
Kimberlite0 -
mmmt and new drug PazopanibRoseyR said:My Suggestions
Dear Kimberlite,
Am so sorry to hear of your wife's diagnosis and ordeal.
Would like to offer a hint of hope here: and that is that taxol and carboplatin should be an EASIER chemo regime than the one she last had. (My own onc told me that ifosamide is definitely "harder on you" than carboplatin and taxol.)
I myself have had five rounds of carbo/taxol and so far--I am not exaggerating--NO side effects.
Of course your wife has already been a bit debilitated by a prior chemo regimen so I won't pretend that may not play some role in her response to upcoming treatment. (But I too, by the way, had 25 external radiation treatments of my pelvis after the first three rounds of chemo--and still had no side effects from the fourth and fifth rounds of chemo.)
If it's fear of her chemo that's the main problem right now, here's what I'd recommend.
If she can see an integrative doctor who will prescribe a few supplements for her, your med insurance will pay for office visits
if not for the supplements.
What my integrative doctor prescribed during treatment with taxol/carbo were the following--all availalbe online, by the way.
1) glutamine (a white powdery amino acid), inexpensive
one teaspoon, three times a day, in a glass of water before meals. Start a day before chemo and continue first three days OF chemo. Helps to prevent neuropathy in hands and feet and protects intestines from the chemo
2) fish oil (two to three teaspoons a day AFTER meals) (best brand "Finest Fish Oil by Pharmax)
Helps to protect the intestines and prevent appetite loss. This brand has NO fishy flavor at all! Orange is in it to prevent that.
Research also shows that fish oil helps the taxol to work more effectively!
3) ProGreens (comes in a jar, refrigerate after opening)
Take one scoop each morning before breakfast in a glass of water. Don't let the green color deceive you; it does not taste bad at all. Not good, but not bad! And it's a powerhouse of protective ingredients that fortifies your system against the assaults of chemo. Helps to prevent that horrible constipation most experience during chemo and protects intestines.
If your wife can't eat a lot of green vegetables during chemo, this supplement will supply her with all the nutrients she needs that come from greens!
4) Two multivitamins a day (one, twice a day with meals) - brand, "Nutrient 950" (contains no copper or iron which many researchers believe promote metastasis). Available online and not too expensive. Once she's done chemo and treatment, take two, three times a day.
5) AHCC (two capsules three times a day or three twice a day) brand Protocols for Life.
This is a mushroom extract given to nearly all chemo patients in Japan. Helps soften the effects of chemo and bolsters your killer T-cells (the ones that attack cancer). Problem: it IS expensive: eighty dollars a bottle, and at this dosage, you'd need three bottles a month. You could lower dose to four a day to ease the expense. If you dont take AHCC, you could try Maitake D fraction (half as expensive).
6) Optional: 200 to 400 mgs of vitamin E succinate a day (esp if you fear or are develoopoing numbness or tingling in the extremities).
With just these supplements, I went through five rounds of carbo/taxol with nearly NO side effects: no vomiting, not even nausea, no numbness or tingling in hands and feet, no mouth sores, not even much fatigue.
Finally: While on taxol your wife MUST, in my opinion, take curcumin. Best brand is probably Life Extension's Bio Super Curcumin. She should take two capsules a day WITH meals. Why essential? To prevent an inflammatory response to taxol and to help taxol to work better. There's been some rsearch from Dr. Aggarwal, of MD Anderson about the danger that taxol may, while very good at eliminating any current tumors, may "spread" a few microscopic cells throughout the body; curcumin, his research shows, has been shown to prevent that from happening.
Finally: Please refer to my post under "best books read" near the top of the subject index; I"ve just listed some that were most valuable.
And do take some heart: there HAVE been patients even with Stage IIIC cancer of your wife's sort that have survived far longer than predicted.
Best,
Rosey
Has anyone heard of the phase 2 clinical trial of this drug
at Colorodo State or Sloan Kettering?
thanks
Kimberlite0 -
No side effects from carbo/taxol?RoseyR said:My Suggestions
Dear Kimberlite,
Am so sorry to hear of your wife's diagnosis and ordeal.
Would like to offer a hint of hope here: and that is that taxol and carboplatin should be an EASIER chemo regime than the one she last had. (My own onc told me that ifosamide is definitely "harder on you" than carboplatin and taxol.)
I myself have had five rounds of carbo/taxol and so far--I am not exaggerating--NO side effects.
Of course your wife has already been a bit debilitated by a prior chemo regimen so I won't pretend that may not play some role in her response to upcoming treatment. (But I too, by the way, had 25 external radiation treatments of my pelvis after the first three rounds of chemo--and still had no side effects from the fourth and fifth rounds of chemo.)
If it's fear of her chemo that's the main problem right now, here's what I'd recommend.
If she can see an integrative doctor who will prescribe a few supplements for her, your med insurance will pay for office visits
if not for the supplements.
What my integrative doctor prescribed during treatment with taxol/carbo were the following--all availalbe online, by the way.
1) glutamine (a white powdery amino acid), inexpensive
one teaspoon, three times a day, in a glass of water before meals. Start a day before chemo and continue first three days OF chemo. Helps to prevent neuropathy in hands and feet and protects intestines from the chemo
2) fish oil (two to three teaspoons a day AFTER meals) (best brand "Finest Fish Oil by Pharmax)
Helps to protect the intestines and prevent appetite loss. This brand has NO fishy flavor at all! Orange is in it to prevent that.
Research also shows that fish oil helps the taxol to work more effectively!
3) ProGreens (comes in a jar, refrigerate after opening)
Take one scoop each morning before breakfast in a glass of water. Don't let the green color deceive you; it does not taste bad at all. Not good, but not bad! And it's a powerhouse of protective ingredients that fortifies your system against the assaults of chemo. Helps to prevent that horrible constipation most experience during chemo and protects intestines.
If your wife can't eat a lot of green vegetables during chemo, this supplement will supply her with all the nutrients she needs that come from greens!
4) Two multivitamins a day (one, twice a day with meals) - brand, "Nutrient 950" (contains no copper or iron which many researchers believe promote metastasis). Available online and not too expensive. Once she's done chemo and treatment, take two, three times a day.
5) AHCC (two capsules three times a day or three twice a day) brand Protocols for Life.
This is a mushroom extract given to nearly all chemo patients in Japan. Helps soften the effects of chemo and bolsters your killer T-cells (the ones that attack cancer). Problem: it IS expensive: eighty dollars a bottle, and at this dosage, you'd need three bottles a month. You could lower dose to four a day to ease the expense. If you dont take AHCC, you could try Maitake D fraction (half as expensive).
6) Optional: 200 to 400 mgs of vitamin E succinate a day (esp if you fear or are develoopoing numbness or tingling in the extremities).
With just these supplements, I went through five rounds of carbo/taxol with nearly NO side effects: no vomiting, not even nausea, no numbness or tingling in hands and feet, no mouth sores, not even much fatigue.
Finally: While on taxol your wife MUST, in my opinion, take curcumin. Best brand is probably Life Extension's Bio Super Curcumin. She should take two capsules a day WITH meals. Why essential? To prevent an inflammatory response to taxol and to help taxol to work better. There's been some rsearch from Dr. Aggarwal, of MD Anderson about the danger that taxol may, while very good at eliminating any current tumors, may "spread" a few microscopic cells throughout the body; curcumin, his research shows, has been shown to prevent that from happening.
Finally: Please refer to my post under "best books read" near the top of the subject index; I"ve just listed some that were most valuable.
And do take some heart: there HAVE been patients even with Stage IIIC cancer of your wife's sort that have survived far longer than predicted.
Best,
Rosey
Dear RoseyR
So you never lost your hair from chemo? Good for you! Any idea which supplement helped you not go bald? I would love to know.
thanks,
Carolen0 -
Of course I DID lose my hair!carolenk said:No side effects from carbo/taxol?
Dear RoseyR
So you never lost your hair from chemo? Good for you! Any idea which supplement helped you not go bald? I would love to know.
thanks,
Carolen
Carolen,
Sorry: side effects to me meant nausea, flulike symptoms, mouth sores, peripheral neuropathy, and fatigue.
I had none of those.
But I did lose my hair after the second round of carbo-taxol. (Curiously haven't lost any more of it after round 5 and 6, however; it's now half an inch long and my last treatment was two weeks ago.)
I am so unconcerned about hair loss that I neglected to mention it as a "side effect."
Sorry,
Rosey0 -
NO, but will look into it.kimberlite said:mmmt and new drug Pazopanib
Has anyone heard of the phase 2 clinical trial of this drug
at Colorodo State or Sloan Kettering?
thanks
Kimberlite
Kimberlite,
Will now try to research this trial and new drug. Have you heard promising things about it?
Rosey0 -
NO, but will look into it.kimberlite said:mmmt and new drug Pazopanib
Has anyone heard of the phase 2 clinical trial of this drug
at Colorodo State or Sloan Kettering?
thanks
Kimberlite
Kimberlite,
Will now try to research this trial and new drug. Have you heard promising things about it?
Rosey0 -
Panzopanibkimberlite said:mmmt and new drug Pazopanib
Has anyone heard of the phase 2 clinical trial of this drug
at Colorodo State or Sloan Kettering?
thanks
Kimberlite
I did 2 28 day cycles with this clinical trial after witch my CT should increased Lymph node activity as well as growth of the tumor in my liver and a new spot. They are now suggesting a clinical trial of Ixabepilone Phase II.
I had 9 rounds of Carboplatin and Taxol. Which shrunk the tumors and put lymph nodes into remission. But at the end of 9 the tumors were once again active so that is when I went to the Panzopanib.
Will be anxious to know how this worked for you
bkramer04120 -
Foods that you LIMIT?dlustrous1 said:Question!
I had the chemo treatment first and then followed with the radiation, external and internal. I try and eat well, but with the radiation scarring, I have bouts of intestinal blockage so fresh fruits and vegetables, seeds, nuts and all of the good fiber foods we should be eating are a no no for me. In all honesty, I never thought I would still be around so eating is one of my pleasures and I haven't limited what I eat other than those I mentioned before. I am going to have a PET scan since I have just hit my 5-year "birthday" and truly, am scared to death. I don't think the fear ever diminishes. I wish you luck with everything...life is precious. Remember to enjoy each day...blessings to you and yours...
Diane,
Scrolling back through these posts, saw this message again. You say you "havn't limited what I eat other than those I mentioned before."
Can you let us know what foods you've limited? (I can't find the answer in prior posts and your long remission from this cancer i'm sure inspires many. So we'd love to know what foods you've limited. I assume you can't eat raw fruits and vegetables now?
Thanks,
Rosey0 -
what supplements?bkramer0412 said:Panzopanib
I did 2 28 day cycles with this clinical trial after witch my CT should increased Lymph node activity as well as growth of the tumor in my liver and a new spot. They are now suggesting a clinical trial of Ixabepilone Phase II.
I had 9 rounds of Carboplatin and Taxol. Which shrunk the tumors and put lymph nodes into remission. But at the end of 9 the tumors were once again active so that is when I went to the Panzopanib.
Will be anxious to know how this worked for you
bkramer0412
Rosey, have you continued taking any of the supplements you listed above, now that you have finished chemo? If so, which ones and in which dosage?
Is your integrative medicine doctor at Penn or elsewhere?
thanks
JOANN0 -
What I Continue to TakeJoAnnDK said:what supplements?
Rosey, have you continued taking any of the supplements you listed above, now that you have finished chemo? If so, which ones and in which dosage?
Is your integrative medicine doctor at Penn or elsewhere?
thanks
JOANN
Dear JOANN,
Having just finished treatment (for at least a year or two, let's hope!), including three rounds of taxol/carbo, 25 external pelvic radiation treatments, and three more sessions of taxol/carbo, I continue to take the following:
ProGreens (one scoop in glass of water before breakfast)
multivitamin (Formula 950, without copper or iron), two a day
curcumin (brand is SuperBiocurcumin, highly absorbable, by Life Extension, 2 capsules with meals each day)
sylibin (derivative of milk thistle that protects liver), two a day with meals
I WOULD have continued, as well, with the following but my platelets dropped so low at end of treatment that couldn't risk any more bloodthinning supplements:
3 tsps of "Finest Pure Fish Oil" a day after meals by Pharmax
200-400 mgs a day of dry Vitamin E (vitamin E succinate)
astragalus (esp good when your neutrophils are low; helps to ward off infections; also helps chemo to be more effective),
2 capsules twice or three times a day between meals, brand is GAIA (60 caps per bottle)
All were prescribed by my integrative physician, Dr. Stephen Rosenzweig in Philadelphia.
NO way my onc would have approved; like most American oncologists, she told me "NO supplements but a multivitamin." Nine months of my own research and Rosenzweig's advice (MD from U Penn who studied in Eastern Europe afterwards for six years) persuaded me that supps ARE the way to go.
But hadn't realized, when platelets were falling, that fish ol and E tend to thin the blood a bit--so I cut back on them during my last round of chemo. (In effect, all my dietary habits--lots of green tea, blueberries each morning in oatmeal, little red meat, lots of garlic, ginger, curcumin--ALL have a blood thinning effect--equivalent to fewer platelets. According to Dr. Keith Block, thin blood is exactly what you WANT if you have cancer because "thick blood" (dense platelets) encourages metastasis. But when your platelets fell as low as mine, you risk bleeding a bit--so I recently cut out blood-thinning supps except for curcumin, which I'm convinced is essential to stopping the capacity of taxol to CAUSE metastasis.
I'm due to see my integrative doctor in ten days and recall his advising that when I'm done treatment, he wants to boost the antioxidants (C, E, etc). Am even considering intravenous Vitamin C if I can afford a few treatments, for have read of several patients of Dr. Jeanne Drisko with ovarian cancer, stage 3C, who took vitamins similar to the ones I've been taking during chemo and afterwards had a lot of intravenous C--and three years later, are NED!!! (Major studies are going on to examine the role of antioxidants during treatment for gynecological cancers but in the meantime I prefer to TRY to use them.
Please refresh my memory on your own diagnosis. And do you leave near Phila? If so, and would like to meet for lunch sometime, let me know. Did nine months of my own research on rare uterine cancers because I have great medical leave where I work. During recovery from hysterectomy and subsequent treatment I read, read, read. And kept notes.
Warmly,
Rosey0 -
What I Continue to TakeJoAnnDK said:what supplements?
Rosey, have you continued taking any of the supplements you listed above, now that you have finished chemo? If so, which ones and in which dosage?
Is your integrative medicine doctor at Penn or elsewhere?
thanks
JOANN
Dear JOANN,
Having just finished treatment (for at least a year or two, let's hope!), including three rounds of taxol/carbo, 25 external pelvic radiation treatments, and three more sessions of taxol/carbo, I continue to take the following:
ProGreens (one scoop in glass of water before breakfast)
multivitamin (Formula 950, without copper or iron), two a day
curcumin (brand is SuperBiocurcumin, highly absorbable, by Life Extension, 2 capsules with meals each day)
sylibin (derivative of milk thistle that protects liver), two a day with meals
I WOULD have continued, as well, with the following but my platelets dropped so low at end of treatment that couldn't risk any more bloodthinning supplements:
3 tsps of "Finest Pure Fish Oil" a day after meals by Pharmax
200-400 mgs a day of dry Vitamin E (vitamin E succinate)
astragalus (esp good when your neutrophils are low; helps to ward off infections; also helps chemo to be more effective),
2 capsules twice or three times a day between meals, brand is GAIA (60 caps per bottle)
All were prescribed by my integrative physician, Dr. Stephen Rosenzweig in Philadelphia.
NO way my onc would have approved; like most American oncologists, she told me "NO supplements but a multivitamin." Nine months of my own research and Rosenzweig's advice (MD from U Penn who studied in Eastern Europe afterwards for six years) persuaded me that supps ARE the way to go.
But hadn't realized, when platelets were falling, that fish ol and E tend to thin the blood a bit--so I cut back on them during my last round of chemo. (In effect, all my dietary habits--lots of green tea, blueberries each morning in oatmeal, little red meat, lots of garlic, ginger, curcumin--ALL have a blood thinning effect--equivalent to fewer platelets. According to Dr. Keith Block, thin blood is exactly what you WANT if you have cancer because "thick blood" (dense platelets) encourages metastasis. But when your platelets fell as low as mine, you risk bleeding a bit--so I recently cut out blood-thinning supps except for curcumin, which I'm convinced is essential to stopping the capacity of taxol to CAUSE metastasis.
I'm due to see my integrative doctor in ten days and recall his advising that when I'm done treatment, he wants to boost the antioxidants (C, E, etc). Am even considering intravenous Vitamin C if I can afford a few treatments, for have read of several patients of Dr. Jeanne Drisko with ovarian cancer, stage 3C, who took vitamins similar to the ones I've been taking during chemo and afterwards had a lot of intravenous C--and three years later, are NED!!! (Major studies are going on to examine the role of antioxidants during treatment for gynecological cancers but in the meantime I prefer to TRY to use them.
Please refresh my memory on your own diagnosis. And do you leave near Phila? If so, and would like to meet for lunch sometime, let me know. Did nine months of my own research on rare uterine cancers because I have great medical leave where I work. During recovery from hysterectomy and subsequent treatment I read, read, read. And kept notes.
Warmly,
Rosey0 -
Panzopanib--bkramer0412bkramer0412 said:Panzopanib
I did 2 28 day cycles with this clinical trial after witch my CT should increased Lymph node activity as well as growth of the tumor in my liver and a new spot. They are now suggesting a clinical trial of Ixabepilone Phase II.
I had 9 rounds of Carboplatin and Taxol. Which shrunk the tumors and put lymph nodes into remission. But at the end of 9 the tumors were once again active so that is when I went to the Panzopanib.
Will be anxious to know how this worked for you
bkramer0412
sorry it didn't work for you.
howlong ago did you use this drug and at what hospital?
thanks
eric0 -
Panzopanib--bkramer0412bkramer0412 said:Panzopanib
I did 2 28 day cycles with this clinical trial after witch my CT should increased Lymph node activity as well as growth of the tumor in my liver and a new spot. They are now suggesting a clinical trial of Ixabepilone Phase II.
I had 9 rounds of Carboplatin and Taxol. Which shrunk the tumors and put lymph nodes into remission. But at the end of 9 the tumors were once again active so that is when I went to the Panzopanib.
Will be anxious to know how this worked for you
bkramer0412
sorry it didn't work for you.
howlong ago did you use this drug and at what hospital?
thanks
eric0 -
thin bloodRoseyR said:What I Continue to Take
Dear JOANN,
Having just finished treatment (for at least a year or two, let's hope!), including three rounds of taxol/carbo, 25 external pelvic radiation treatments, and three more sessions of taxol/carbo, I continue to take the following:
ProGreens (one scoop in glass of water before breakfast)
multivitamin (Formula 950, without copper or iron), two a day
curcumin (brand is SuperBiocurcumin, highly absorbable, by Life Extension, 2 capsules with meals each day)
sylibin (derivative of milk thistle that protects liver), two a day with meals
I WOULD have continued, as well, with the following but my platelets dropped so low at end of treatment that couldn't risk any more bloodthinning supplements:
3 tsps of "Finest Pure Fish Oil" a day after meals by Pharmax
200-400 mgs a day of dry Vitamin E (vitamin E succinate)
astragalus (esp good when your neutrophils are low; helps to ward off infections; also helps chemo to be more effective),
2 capsules twice or three times a day between meals, brand is GAIA (60 caps per bottle)
All were prescribed by my integrative physician, Dr. Stephen Rosenzweig in Philadelphia.
NO way my onc would have approved; like most American oncologists, she told me "NO supplements but a multivitamin." Nine months of my own research and Rosenzweig's advice (MD from U Penn who studied in Eastern Europe afterwards for six years) persuaded me that supps ARE the way to go.
But hadn't realized, when platelets were falling, that fish ol and E tend to thin the blood a bit--so I cut back on them during my last round of chemo. (In effect, all my dietary habits--lots of green tea, blueberries each morning in oatmeal, little red meat, lots of garlic, ginger, curcumin--ALL have a blood thinning effect--equivalent to fewer platelets. According to Dr. Keith Block, thin blood is exactly what you WANT if you have cancer because "thick blood" (dense platelets) encourages metastasis. But when your platelets fell as low as mine, you risk bleeding a bit--so I recently cut out blood-thinning supps except for curcumin, which I'm convinced is essential to stopping the capacity of taxol to CAUSE metastasis.
I'm due to see my integrative doctor in ten days and recall his advising that when I'm done treatment, he wants to boost the antioxidants (C, E, etc). Am even considering intravenous Vitamin C if I can afford a few treatments, for have read of several patients of Dr. Jeanne Drisko with ovarian cancer, stage 3C, who took vitamins similar to the ones I've been taking during chemo and afterwards had a lot of intravenous C--and three years later, are NED!!! (Major studies are going on to examine the role of antioxidants during treatment for gynecological cancers but in the meantime I prefer to TRY to use them.
Please refresh my memory on your own diagnosis. And do you leave near Phila? If so, and would like to meet for lunch sometime, let me know. Did nine months of my own research on rare uterine cancers because I have great medical leave where I work. During recovery from hysterectomy and subsequent treatment I read, read, read. And kept notes.
Warmly,
Rosey
Rosey.......Only having blood work done every three months (after treatment is over), how does one know if one's blood is thick or thin?0 -
Living with and 'surviving' MMMT
i was diagnosed with stage IIIa uterine carcinosarcoma after an hysterectomy in Jan 2009: I was 59, in good health with healthy habits and no previous serious illness.
Although my pelvic wash was positive and deep endometrial invasion but my lymph nodes were clean. My surgeon recommended intensive chemo cocktail and full pelvic radiation. But the metaphor of 'waging war on cancer' did not resonate at all with me. A month later, I traveled from Charleston SC where I live to Boston. Went to Dana Farber, had my pathology re read and had a consult: the next day, i did a group consult at Mass General where I heard a suggested treatment plan that i was willing to try as well as the name of an oncologist at the medical university down the street from my house.
At the advice of my environmental doctor, I began taking turmeric and other anti inflammatories (cancer is inflammation), upped my dosage of CoQ10, EFAs,A,D,E and several chelators and L Glutathione (all folks with cancer have low levels) and LDN (google LDN: it is the secret to success and costs only $20 per month). I had all my dental amalgams replaced with ceramic fillings and I pulled out my root canals.
Four months later after I had healed sufficiently, I began 6 treatments of Avastin, nothing else. My oncologist does not believe in scans, just physical exams (in front of a group of medical residents)--which is good because there is a growing body of data to suggest that frequent scans just facilitate distant metatasis.
In the fall/winter of 10, I had a 'local recurrence' in the upper vaginal area: my oncologist thought it was pre existing (before the surgery) and just had 'matured' enough to be visually seen by my oncologist although the radiologist was impressed that he had even seen it. I did consent to 6 sessions of brachytherapy radiation although I had very severe side effects.
And during the winter of 11, I did a 4 week intensive bio detox program which consisted of oxygen and IV therapy for 2 hours every day, 120 ounces of alkaline water, more chelators, and 3-4 hours a day of infrared sauna. I also was walking or exercising 40-60 minutes a day.
I do green drinks, take lots of supplements, dramatically limit my intakes of sugars(no corn syrup at all), eat lots of colorful fruits and vegetables, exercise and stretch regularly (check out www. stretchingusa.com)....as well as maintain a very full professional schedule.
I have invested alot of time of learning about 'how to live successfully with cancer (cause we all have it even if it is much less active at any one time)...and discovering what makes good cells go bad...and reducing those things that stimulate good cells going bad.
There is alot of very creative approaches coming out of the EU and China. And the US protocols have not significantly advanced in the last 50 years.
My original oncologist threatened me and told me that I would be dead within a year if I did not do exactly as he said. And it has been nearly 3 years with no evidence of metatasis.
NED without chemo and proud of it0 -
Panzopanibkimberlite said:Panzopanib--bkramer0412
sorry it didn't work for you.
howlong ago did you use this drug and at what hospital?
thanks
eric
I was on the drug for two twenty eight day cycles. I had no side effects. However my rumors became more active. I was in phase 2 of the clinical trial at Dr Sharma's office in Hinsdale, IL. I begin a new clinical trial the 28th of September. Barb0 -
Panzopanibkimberlite said:Panzopanib--bkramer0412
sorry it didn't work for you.
howlong ago did you use this drug and at what hospital?
thanks
eric
I was on the drug for two twenty eight day cycles. I had no side effects. However my tumors became more active. I was in phase 2 of the clinical trial at Dr Sharma's office in Hinsdale, IL. I was on the drug August and July of 2011. I begin a new clinical trial the 28th of September. Barb0 -
avastinmadcoast said:Living with and 'surviving' MMMT
i was diagnosed with stage IIIa uterine carcinosarcoma after an hysterectomy in Jan 2009: I was 59, in good health with healthy habits and no previous serious illness.
Although my pelvic wash was positive and deep endometrial invasion but my lymph nodes were clean. My surgeon recommended intensive chemo cocktail and full pelvic radiation. But the metaphor of 'waging war on cancer' did not resonate at all with me. A month later, I traveled from Charleston SC where I live to Boston. Went to Dana Farber, had my pathology re read and had a consult: the next day, i did a group consult at Mass General where I heard a suggested treatment plan that i was willing to try as well as the name of an oncologist at the medical university down the street from my house.
At the advice of my environmental doctor, I began taking turmeric and other anti inflammatories (cancer is inflammation), upped my dosage of CoQ10, EFAs,A,D,E and several chelators and L Glutathione (all folks with cancer have low levels) and LDN (google LDN: it is the secret to success and costs only $20 per month). I had all my dental amalgams replaced with ceramic fillings and I pulled out my root canals.
Four months later after I had healed sufficiently, I began 6 treatments of Avastin, nothing else. My oncologist does not believe in scans, just physical exams (in front of a group of medical residents)--which is good because there is a growing body of data to suggest that frequent scans just facilitate distant metatasis.
In the fall/winter of 10, I had a 'local recurrence' in the upper vaginal area: my oncologist thought it was pre existing (before the surgery) and just had 'matured' enough to be visually seen by my oncologist although the radiologist was impressed that he had even seen it. I did consent to 6 sessions of brachytherapy radiation although I had very severe side effects.
And during the winter of 11, I did a 4 week intensive bio detox program which consisted of oxygen and IV therapy for 2 hours every day, 120 ounces of alkaline water, more chelators, and 3-4 hours a day of infrared sauna. I also was walking or exercising 40-60 minutes a day.
I do green drinks, take lots of supplements, dramatically limit my intakes of sugars(no corn syrup at all), eat lots of colorful fruits and vegetables, exercise and stretch regularly (check out www. stretchingusa.com)....as well as maintain a very full professional schedule.
I have invested alot of time of learning about 'how to live successfully with cancer (cause we all have it even if it is much less active at any one time)...and discovering what makes good cells go bad...and reducing those things that stimulate good cells going bad.
There is alot of very creative approaches coming out of the EU and China. And the US protocols have not significantly advanced in the last 50 years.
My original oncologist threatened me and told me that I would be dead within a year if I did not do exactly as he said. And it has been nearly 3 years with no evidence of metatasis.
NED without chemo and proud of it
Madcoast,
Thanks for the info and glad you are NED. You signed off "NED without chemo and proud" - however Avastin is on my list of chemotherapy agents. I'm confused. Mary Ann0 -
Avastin is not like the typical chemodaisy366 said:avastin
Madcoast,
Thanks for the info and glad you are NED. You signed off "NED without chemo and proud" - however Avastin is on my list of chemotherapy agents. I'm confused. Mary Ann
I think when someone uses the term "chemo," it is in reference to the anti-metabolic agents that damage healthy cells along with malignant cells.
Avastin is a monoclonal antibody that falls in the category of "targeted biological therapy." It is an anti-neoangiogenesis agent (supposed to stop the growth of new blood vessels that feed cancer).
I wouldn't consider Avastin to be "chemotherapy" just because it is used to treat cancer.0
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