Chemo resistant tumors

Tethys41

I was getting a thermography done yesterday, and it turns out the nurse performing it is the same nurse practitioner I had heard of a few months ago who was working on a clinical trial, treating cancer with large doses of proton pump inhibitors. I got a full hour to ask her questions, and she is a wealth of information. Long and short of it is that the trial, although challenging, is going well and what the treatment is best for is sensitizing cancer that has become chemo resistant so that the chemo is effective again. It kills the cancer while it is also sensitizing it. She said the proton pump inhibitor is the most drastic measure to achieve sensitization. She said the first level to sensitize cancer again to chemo is high dose IV vitamin C. The second level to re-sensitize the cancer is Iscador (mistletoe injections). If levels one or two are not effective; the proton pump inhibitor treatment is the next step. I asked whether these approaches would sensitize platinum resistant tumors to platinum drugs and she responded that they would. I asked about tumor assays that show which forms of chemo are effective on a given tumor, and whether these treatments would sensitize a tumor to any form of chemo, not just the ones to which it was already sensitive, and she said they would. I share this as it would seem that this information would be helpful for patients that are trying their hands at the whole array of chemo drugs or those who are not getting a response from chemo.

poopergirl14052

good info
thank you What is thermogragy?//Thanks..val

Tethys41

poopergirl14052 said:

good info
thank you What is thermogragy?//Thanks..val

Thermography
It is an type of imaging that picks up variations of temperature on your body surface that can indicate certain activities going on in your body. It is supposed to be able to detect whether a breast cancer tumor is or has formed and has accuracy equivilent to mammography, without the radiation. From my imaging, they can tell I have insulin resistance and autoimmune conditions.

maggie_wilson

Tethys41 said:

Thermography
It is an type of imaging that picks up variations of temperature on your body surface that can indicate certain activities going on in your body. It is supposed to be able to detect whether a breast cancer tumor is or has formed and has accuracy equivilent to mammography, without the radiation. From my imaging, they can tell I have insulin resistance and autoimmune conditions.

tethys
that is such interesting information. always makes sense to me to see what's happening on this board, since i'm usually on the uterine cancer board, despite having upsc. i've just had a long discussion with several people on uterine board re: vitamin c, iv, just as i have done some here. i was extremely interested to learn that high dose vitamin c sensitizes cancer to chemo again. who would have thought?

btw, having an assay is a very expensive proposition, $3500 out-of-pocket. i think my doctor took it into consideration, but because there have been no studies on the efficacy of this process on human beings, she was still skeptical. she did manage to give me two chemos that were shown to be synergistic, actually, one and a "cousin" of the other. i think this is what she probably had in mind the entire time. in the meantime, i'm appealing my insurance's denial of the assay, but i probably won't win; still it's worth doing, so they know that this could be important to women. my surgeon wrote a great letter, but didn't make the difference. in any case, the chemo combination seems to be working well, though kicking my butt, but as long as it's doing it's job, i'm not complaining much.

thanx for your always good information. wanted to mention here that front page of the san francisco chronicle had an article on 4 august about starving cancer. that 5 drugs have been discovered to inhibit glucose, which is the main fuel of cancer.. the researchers, at stanford are quite excited about this, and think a combination of these drugs could really make a difference, targets the cancer cells, and leaves healthy cells unharmed. has not been tried on humans yet, so will probably be a while before we see it available, still glad they found something promising.

sisterhood,

maggie

realtimedyno

maggie_wilson said:

tethys
that is such interesting information. always makes sense to me to see what's happening on this board, since i'm usually on the uterine cancer board, despite having upsc. i've just had a long discussion with several people on uterine board re: vitamin c, iv, just as i have done some here. i was extremely interested to learn that high dose vitamin c sensitizes cancer to chemo again. who would have thought?

btw, having an assay is a very expensive proposition, $3500 out-of-pocket. i think my doctor took it into consideration, but because there have been no studies on the efficacy of this process on human beings, she was still skeptical. she did manage to give me two chemos that were shown to be synergistic, actually, one and a "cousin" of the other. i think this is what she probably had in mind the entire time. in the meantime, i'm appealing my insurance's denial of the assay, but i probably won't win; still it's worth doing, so they know that this could be important to women. my surgeon wrote a great letter, but didn't make the difference. in any case, the chemo combination seems to be working well, though kicking my butt, but as long as it's doing it's job, i'm not complaining much.

thanx for your always good information. wanted to mention here that front page of the san francisco chronicle had an article on 4 august about starving cancer. that 5 drugs have been discovered to inhibit glucose, which is the main fuel of cancer.. the researchers, at stanford are quite excited about this, and think a combination of these drugs could really make a difference, targets the cancer cells, and leaves healthy cells unharmed. has not been tried on humans yet, so will probably be a while before we see it available, still glad they found something promising.

sisterhood,

maggie

Sugar and cell assay
Good comment, Maggie. I'm taking the frontline carbo/taxol, although the Rational Therapeutics' recommendation was otherwise. Interestingly, cisplatin was sensitive, but its cousin carboplatin wasn't. Of course, who wants cisplatin!? I've just completed 4 infusions of carbo/taxol and after an initial big drop in the CA 125 (978 to 493; and then down to 293), infusion # 3 only lowered the CA 125 by 20 more points. I'm thinking about requesting a mid-stream correction to a sensitive/synergistic combination.

About sugar...I've been on a very strict paleo diet for well over a year now. I eat no sweets of any kind, not starchy vegetables, no grains of any kind, maximum of 50 mg. of protein daily. In addition, I hike uphill three miles every day. Despite all this, my fasting glucose level (which should have been around 60-70, considering the diet)checked out at 104. My oncologist said it was due to the chemo!!! What a bummer...I'm trying to deny the cancer cells glucose sustenance and they get a mouthful anyway!

Tethys41

realtimedyno said:

Sugar and cell assay
Good comment, Maggie. I'm taking the frontline carbo/taxol, although the Rational Therapeutics' recommendation was otherwise. Interestingly, cisplatin was sensitive, but its cousin carboplatin wasn't. Of course, who wants cisplatin!? I've just completed 4 infusions of carbo/taxol and after an initial big drop in the CA 125 (978 to 493; and then down to 293), infusion # 3 only lowered the CA 125 by 20 more points. I'm thinking about requesting a mid-stream correction to a sensitive/synergistic combination.

About sugar...I've been on a very strict paleo diet for well over a year now. I eat no sweets of any kind, not starchy vegetables, no grains of any kind, maximum of 50 mg. of protein daily. In addition, I hike uphill three miles every day. Despite all this, my fasting glucose level (which should have been around 60-70, considering the diet)checked out at 104. My oncologist said it was due to the chemo!!! What a bummer...I'm trying to deny the cancer cells glucose sustenance and they get a mouthful anyway!

Sugar
Frankly, I think sugar is not that big a deal during chemo. I practially lived on ice cream during chemo, because I couldn't tolerate much of anything else. After chemo, however, I do believe it is important to avoid sugar. It would be interesting to see if IV vitamin C would get your numbers moving back down again.

LaundryQueen

realtimedyno said:

Sugar and cell assay
Good comment, Maggie. I'm taking the frontline carbo/taxol, although the Rational Therapeutics' recommendation was otherwise. Interestingly, cisplatin was sensitive, but its cousin carboplatin wasn't. Of course, who wants cisplatin!? I've just completed 4 infusions of carbo/taxol and after an initial big drop in the CA 125 (978 to 493; and then down to 293), infusion # 3 only lowered the CA 125 by 20 more points. I'm thinking about requesting a mid-stream correction to a sensitive/synergistic combination.

About sugar...I've been on a very strict paleo diet for well over a year now. I eat no sweets of any kind, not starchy vegetables, no grains of any kind, maximum of 50 mg. of protein daily. In addition, I hike uphill three miles every day. Despite all this, my fasting glucose level (which should have been around 60-70, considering the diet)checked out at 104. My oncologist said it was due to the chemo!!! What a bummer...I'm trying to deny the cancer cells glucose sustenance and they get a mouthful anyway!

Dawn phenomenon
Realtimedyno: your high fasting glucose could be related to inadequate glycogen storage (not eating enough complex carbs or burning up your reserves) or check into something called the dawn phenomenon.

If you have your own glucometer, check your blood glucose about an hour after you eat, if it drops below 100, you have inadequate glycogen. In any case, if your non-fasting glucose is less than 140, you are fine.

I think the steroids mess with blood sugar more than the actual chemo does.

LQ

carolenk

LaundryQueen said:

Dawn phenomenon
Realtimedyno: your high fasting glucose could be related to inadequate glycogen storage (not eating enough complex carbs or burning up your reserves) or check into something called the dawn phenomenon.

If you have your own glucometer, check your blood glucose about an hour after you eat, if it drops below 100, you have inadequate glycogen. In any case, if your non-fasting glucose is less than 140, you are fine.

I think the steroids mess with blood sugar more than the actual chemo does.

LQ

Proton pump inhibitors
Just wanted to add some comments about proton pump inhibitors (PPIs). The way cancer becomes chemo resistant is by creating lots of proton pumps that pump the chemo out of the cancer cells to protect itself. So by taking something like Prilosec or Nexium (there are a whole bunch of these PPI drugs available both on prescription and over the counter), one can block the proton pumps and thwart the cancer's attempt to protect itself against chemo.

PPIs are typically given to people who have GERD (reflux of stomach acid) and I have not heard of it being prescribed for chemoresistance. However, there is research to support the use of PPIs along with chemo and many women are given some type of PPI to treat for the side effects of chemo.

PPIs are given to intentionally block the hydrochloric acid release in the stomach. There can be a downside to blocking this acid. Hydrochloric acid is an important part of protein digestion and it also stimulates the release of bile (bile contains estrogen metabolites and toxins among many other things).

Hydrochloric acid is so important to health that there is an entire book written by Jonathan Wright ("Why Stomach Acid is Good for You") about hydrochloric acid (aka stomach acid). There is a higher incidence of pneumonia in people who are taking PPIs. So these drugs are not without their risks.

If I had chemoresistance, I would probably take one of the PPIs but then I would take a digestive supplement that contains betaine hydrochloride (when I ate) so that I would maximize my digestion of protein and optimize my bile release. Chemoresistance is a LOT scarier than any of the side effects from the PPIs.

Tethys41

carolenk said:

Proton pump inhibitors
Just wanted to add some comments about proton pump inhibitors (PPIs). The way cancer becomes chemo resistant is by creating lots of proton pumps that pump the chemo out of the cancer cells to protect itself. So by taking something like Prilosec or Nexium (there are a whole bunch of these PPI drugs available both on prescription and over the counter), one can block the proton pumps and thwart the cancer's attempt to protect itself against chemo.

PPIs are typically given to people who have GERD (reflux of stomach acid) and I have not heard of it being prescribed for chemoresistance. However, there is research to support the use of PPIs along with chemo and many women are given some type of PPI to treat for the side effects of chemo.

PPIs are given to intentionally block the hydrochloric acid release in the stomach. There can be a downside to blocking this acid. Hydrochloric acid is an important part of protein digestion and it also stimulates the release of bile (bile contains estrogen metabolites and toxins among many other things).

Hydrochloric acid is so important to health that there is an entire book written by Jonathan Wright ("Why Stomach Acid is Good for You") about hydrochloric acid (aka stomach acid). There is a higher incidence of pneumonia in people who are taking PPIs. So these drugs are not without their risks.

If I had chemoresistance, I would probably take one of the PPIs but then I would take a digestive supplement that contains betaine hydrochloride (when I ate) so that I would maximize my digestion of protein and optimize my bile release. Chemoresistance is a LOT scarier than any of the side effects from the PPIs.

Proton Pump Inhibitors
Please be aware that I am not advocating that taking Nexium or Prilosec will reduce your tumor resistance to chemo. The proton pump inhibitor study I am referring to is a trial being conducted by integrative oncology doctors. It is not something that can be self administered. This trial is using high doses of PPIs and involves multiple doctors, nurses, and arrangements with a nearyby emergency room to address potential side effects. The patients who are participating in the trial are required to stay in Colorado Springs over the course of the treatment.

The science behind the treatment is that cancer cells keep an alkaline environment within the cells and an acidic environment outside the cells. The acidic environment outside the cells reduces the body's ability to fight the cancer. The PPIs limit the cancer cells' ability to maintain this desireable environment, resulting in higher acidity within the cell and lower acidity outside the cell, making it weaker and more vulnerable to chemo and the body's immune system.

As I said, this method of sensitizing the cancer cells to chemo is step 3, if the other methods fail. It has side effects and definitely needs to be done under a doctor's supervision.

maggie_wilson

Tethys41 said:

Proton Pump Inhibitors
Please be aware that I am not advocating that taking Nexium or Prilosec will reduce your tumor resistance to chemo. The proton pump inhibitor study I am referring to is a trial being conducted by integrative oncology doctors. It is not something that can be self administered. This trial is using high doses of PPIs and involves multiple doctors, nurses, and arrangements with a nearyby emergency room to address potential side effects. The patients who are participating in the trial are required to stay in Colorado Springs over the course of the treatment.

The science behind the treatment is that cancer cells keep an alkaline environment within the cells and an acidic environment outside the cells. The acidic environment outside the cells reduces the body's ability to fight the cancer. The PPIs limit the cancer cells' ability to maintain this desireable environment, resulting in higher acidity within the cell and lower acidity outside the cell, making it weaker and more vulnerable to chemo and the body's immune system.

As I said, this method of sensitizing the cancer cells to chemo is step 3, if the other methods fail. It has side effects and definitely needs to be done under a doctor's supervision.

i'm on carboplatin and gemzar, and my ca 125 went down from around 350 to 143 the first chemo, then from 143 to 53 the second chemo, 3rd chemo went down to 32, so clearly going down less each time, but still going down. my doctor has stated that the first 4 chemos are the most effective, but i don't know her source for this. still, she is evidence-based, and doesn't make idle comments.

i asked to skip my 6th chemo, since i'm already down to 32, and i think my 5th chemo will go down even more, though probably less than the 4th. she said it was my choice, though when i asked her what she would do, she said she'd probably go for all 6. frankly, i think the cost of the 6th outweighs the benefits. mostly i want to protect my immune system as well as i can. i was scheduled for my 5th chemo today, but my platelets were a little low. they gave me a choice about whether to do it or not, but added that it was almost a given that i'd miss next week's chemo because of low platelets, plus i'd have to have more labs and possible transfusion. i declined to have chemo today; by next monday my platelets will be up, i'm sure, and i'll have a chance of being able to have the last infusion the following monday.

then, i'm exploring high dose iv vitamin c. i've only heard good things about it; and i need to do something other than look forward to chemo for the rest of my life.

are you sure you want to switch chemos at this point? ca 125 do tend to go down less with each chemo, or so i've been told. as long as the trend is down, i think it's still working.

sisterhood,
maggie

Tethys41

maggie_wilson said:

i'm on carboplatin and gemzar, and my ca 125 went down from around 350 to 143 the first chemo, then from 143 to 53 the second chemo, 3rd chemo went down to 32, so clearly going down less each time, but still going down. my doctor has stated that the first 4 chemos are the most effective, but i don't know her source for this. still, she is evidence-based, and doesn't make idle comments.

i asked to skip my 6th chemo, since i'm already down to 32, and i think my 5th chemo will go down even more, though probably less than the 4th. she said it was my choice, though when i asked her what she would do, she said she'd probably go for all 6. frankly, i think the cost of the 6th outweighs the benefits. mostly i want to protect my immune system as well as i can. i was scheduled for my 5th chemo today, but my platelets were a little low. they gave me a choice about whether to do it or not, but added that it was almost a given that i'd miss next week's chemo because of low platelets, plus i'd have to have more labs and possible transfusion. i declined to have chemo today; by next monday my platelets will be up, i'm sure, and i'll have a chance of being able to have the last infusion the following monday.

then, i'm exploring high dose iv vitamin c. i've only heard good things about it; and i need to do something other than look forward to chemo for the rest of my life.

are you sure you want to switch chemos at this point? ca 125 do tend to go down less with each chemo, or so i've been told. as long as the trend is down, i think it's still working.

sisterhood,
maggie

CA 125
Hi Maggie,
I've been told the doctors hope to see the CA-125 drop by half with each chemo. This is why the amount the number drops decreases with each chemo. I actually had 8 rounds of carbo/taxol. My oncologist recommended two additional rounds when I went in for my 6th. She based her advice on the fact that I was holding up well (which I atrribute to the IVC I was receiving) and my initial cancer was very aggressive. She felt that the additional chemos might give me a better chance at a cure, rather than limiting my treatment to the normal 6 rounds. My CA-125 was 5 when she recommended this. I agreed to the two additional doses. I don't know whether there is science that shows additional chemo contributes to more cures, or not. My CA-125 after 8 rounds of chemo was <1. It has gradually inched its way up to 4, but is still lower than what it was after 6 rounds. Personally, I thought it was better to really kick it while it was down. And, if all the additional chemos did was buy me more time before recurrance, I'd rather get the additional chemo while I felt bad anyway, rather than start chemo sooner, once I'm feeling really good. This is all my opinion, and maybe it is something to further discuss with your doctor.

By the way, eating 2 tablespoons of tahini daily will keep your platlet counts up.
Take care

fellinimom

Tethys41 said:

CA 125
Hi Maggie,
I've been told the doctors hope to see the CA-125 drop by half with each chemo. This is why the amount the number drops decreases with each chemo. I actually had 8 rounds of carbo/taxol. My oncologist recommended two additional rounds when I went in for my 6th. She based her advice on the fact that I was holding up well (which I atrribute to the IVC I was receiving) and my initial cancer was very aggressive. She felt that the additional chemos might give me a better chance at a cure, rather than limiting my treatment to the normal 6 rounds. My CA-125 was 5 when she recommended this. I agreed to the two additional doses. I don't know whether there is science that shows additional chemo contributes to more cures, or not. My CA-125 after 8 rounds of chemo was <1. It has gradually inched its way up to 4, but is still lower than what it was after 6 rounds. Personally, I thought it was better to really kick it while it was down. And, if all the additional chemos did was buy me more time before recurrance, I'd rather get the additional chemo while I felt bad anyway, rather than start chemo sooner, once I'm feeling really good. This is all my opinion, and maybe it is something to further discuss with your doctor.

By the way, eating 2 tablespoons of tahini daily will keep your platlet counts up.
Take care</p>

CA125
Hi - I'm just weighing in with my story:

I did 6 rounds of carboplatin/taxotere Dec '10-Mar'11 and my CA125 dropped from >1000 to <5. However, I've already have had a recurrence. So, while it seems I responded beautifully to platinium, I really didn't. I doubt more than 6 rounds would have made a difference. It only takes a few cells to slip by with the initial chemo and you can have a tumor growing again.

I started chemo again last week - topotecan. I'll be getting that once a week for three weeks, then a week off. If I respond to the treatment, most likely I remain on it until it is no longer working. I'm also looking at clinical trials.

PS - what is in tahini that keeps platelets up?

LaundryQueen

fellinimom said:

CA125
Hi - I'm just weighing in with my story:

I did 6 rounds of carboplatin/taxotere Dec '10-Mar'11 and my CA125 dropped from >1000 to <5. However, I've already have had a recurrence. So, while it seems I responded beautifully to platinium, I really didn't. I doubt more than 6 rounds would have made a difference. It only takes a few cells to slip by with the initial chemo and you can have a tumor growing again.

I started chemo again last week - topotecan. I'll be getting that once a week for three weeks, then a week off. If I respond to the treatment, most likely I remain on it until it is no longer working. I'm also looking at clinical trials.

PS - what is in tahini that keeps platelets up?</p>

First recurrence
felinimom: Sounds you and I are in the same situation with having a recurrence so soon after finishing chemo. I had my last chemo 3/11 and my CA-125 started climbing in June. It is over 200 now but my oncologist is OK with having me "sit on it" until fall when he expects that I will be symptomatic. He doesn't believe in treating on the CA-125 level unless the scan shows something or the patient is symptomatic.

Just wondering where your CA-125 level was when you returned to chemo and if you had any symptoms of ascites. If I didn't check my CA-125, I would swear I was in remission.

My oncologist is planning for me to return to carboplatin as I also responded very well to it (even though I could only keep CA-125 down for 3 months). And your oncologist is opting NOT to do a platinum drug. Seems like there is more of an art than a science to treating cancer.

All this being said, I cannot bear the thought of going back on the full-dose chemo again--my bone marrow could barely hold up to five chemo treatments. I've booked a flight leaving next week to go to a clinic in Tijuana, Mexico for 3 weeks. None of the therapies are "proven" but the proven therapies offered here in the US have a pretty poor success rate anyway. I had considered going out of the country when I was first diagnosed but I was way too ill to be able to do that last year.

The office staff at my family doctor's recently told me that when I was diagnosed last year, there was another women who was diagnosed with the same kind of ovarian cancer with carcinomatosis, same stage & grade as me. They knew that I was doing "everything under the sun" in addition to standard surgery & chemo whereas the other women did everything Western medicine could offer her--full dose chemo and lots of it. Last week when I was in for my blood work, the office staff told me that other women had just died. She was 10 years younger than me, too.

Tahini is made from sesame seeds. There is something in the sesame seeds that increases platelets--sesame seed oil has the same effect. I was taking it all through chemo and never had a problem with low platelets.

maggie_wilson

Tethys41 said:

CA 125
Hi Maggie,
I've been told the doctors hope to see the CA-125 drop by half with each chemo. This is why the amount the number drops decreases with each chemo. I actually had 8 rounds of carbo/taxol. My oncologist recommended two additional rounds when I went in for my 6th. She based her advice on the fact that I was holding up well (which I atrribute to the IVC I was receiving) and my initial cancer was very aggressive. She felt that the additional chemos might give me a better chance at a cure, rather than limiting my treatment to the normal 6 rounds. My CA-125 was 5 when she recommended this. I agreed to the two additional doses. I don't know whether there is science that shows additional chemo contributes to more cures, or not. My CA-125 after 8 rounds of chemo was <1. It has gradually inched its way up to 4, but is still lower than what it was after 6 rounds. Personally, I thought it was better to really kick it while it was down. And, if all the additional chemos did was buy me more time before recurrance, I'd rather get the additional chemo while I felt bad anyway, rather than start chemo sooner, once I'm feeling really good. This is all my opinion, and maybe it is something to further discuss with your doctor.

By the way, eating 2 tablespoons of tahini daily will keep your platlet counts up.
Take care</p>

tethys

thanx for the info re: why the number of ca 125 decreases with each chemo. i think i asked my doctor if there were any studies that showed additional chemos contributed to more cures, and i believe she said no. though now i'm not so sure. still, i'm hoping that the extra chemos you had will effect a cure, or at the least, a nice long remission. she did say that most oncologists believe that the more chemo, the better; it's just that most women can't tolerate more than 6 cycles.

that's so interesting re: tahini: i'm getting some today. i know my platelets will be fine by next monday; i just need them to be fine for the following monday, if possible, so i can be through with chemo--at least for a long time. i wish my doctor has okayed vitamin c iv for going through my chemo. i'm going to speak with her in depth re: pursuing high dose vitamin c iv, as soon as i'm done with chemo. most places here, i'm told, do require your doctor's consent for vitamin c treatment. i can't imagine why she wouldn't agree, but who can tell?

in any case, i declined chemo yesterday because my platelets were a little low, but the trend was up, which is why my doctor and nurse thought it would be ok to have it. i certainly did not, especially since it was nearly a "given" that i'd have to skip the following week because of low platelets. why on earth would i have chemo when my platelets are low and feel even worse, plus miss the next one, have additional labs and the possibility of a transfusion? made no sense to me. i didn't speak to my doctor directly. and i know she wouldn't have pushed me to have it, which i feel the nurse kinda did. more convenient for her, i think.

hoping for the best for you. thanx again for the info.

sisterhood,
maggie

maggie_wilson

LaundryQueen said:

First recurrence
felinimom: Sounds you and I are in the same situation with having a recurrence so soon after finishing chemo. I had my last chemo 3/11 and my CA-125 started climbing in June. It is over 200 now but my oncologist is OK with having me "sit on it" until fall when he expects that I will be symptomatic. He doesn't believe in treating on the CA-125 level unless the scan shows something or the patient is symptomatic.

Just wondering where your CA-125 level was when you returned to chemo and if you had any symptoms of ascites. If I didn't check my CA-125, I would swear I was in remission.

My oncologist is planning for me to return to carboplatin as I also responded very well to it (even though I could only keep CA-125 down for 3 months). And your oncologist is opting NOT to do a platinum drug. Seems like there is more of an art than a science to treating cancer.

All this being said, I cannot bear the thought of going back on the full-dose chemo again--my bone marrow could barely hold up to five chemo treatments. I've booked a flight leaving next week to go to a clinic in Tijuana, Mexico for 3 weeks. None of the therapies are "proven" but the proven therapies offered here in the US have a pretty poor success rate anyway. I had considered going out of the country when I was first diagnosed but I was way too ill to be able to do that last year.

The office staff at my family doctor's recently told me that when I was diagnosed last year, there was another women who was diagnosed with the same kind of ovarian cancer with carcinomatosis, same stage & grade as me. They knew that I was doing "everything under the sun" in addition to standard surgery & chemo whereas the other women did everything Western medicine could offer her--full dose chemo and lots of it. Last week when I was in for my blood work, the office staff told me that other women had just died. She was 10 years younger than me, too.

Tahini is made from sesame seeds. There is something in the sesame seeds that increases platelets--sesame seed oil has the same effect. I was taking it all through chemo and never had a problem with low platelets.

laundry queen
i've certainly thought myself of going out of the country for treatment, but haven't really found any place to go with upsc. what kind of treatment are you having in mexico, if you don't mind saying? i wish you the very best, and was sorry to hear of the woman with the same stage and grade as you, has died. it just seems like a gigantic crap shoot most of the time, while we exert whatever control we can to have an effect on our cancers.

sisterhood,
maggie

Tethys41

maggie_wilson said:

tethys

thanx for the info re: why the number of ca 125 decreases with each chemo. i think i asked my doctor if there were any studies that showed additional chemos contributed to more cures, and i believe she said no. though now i'm not so sure. still, i'm hoping that the extra chemos you had will effect a cure, or at the least, a nice long remission. she did say that most oncologists believe that the more chemo, the better; it's just that most women can't tolerate more than 6 cycles.

that's so interesting re: tahini: i'm getting some today. i know my platelets will be fine by next monday; i just need them to be fine for the following monday, if possible, so i can be through with chemo--at least for a long time. i wish my doctor has okayed vitamin c iv for going through my chemo. i'm going to speak with her in depth re: pursuing high dose vitamin c iv, as soon as i'm done with chemo. most places here, i'm told, do require your doctor's consent for vitamin c treatment. i can't imagine why she wouldn't agree, but who can tell?

in any case, i declined chemo yesterday because my platelets were a little low, but the trend was up, which is why my doctor and nurse thought it would be ok to have it. i certainly did not, especially since it was nearly a "given" that i'd have to skip the following week because of low platelets. why on earth would i have chemo when my platelets are low and feel even worse, plus miss the next one, have additional labs and the possibility of a transfusion? made no sense to me. i didn't speak to my doctor directly. and i know she wouldn't have pushed me to have it, which i feel the nurse kinda did. more convenient for her, i think.

hoping for the best for you. thanx again for the info.

sisterhood,
maggie

Doctor's consent
Maggie,
I don't know of any requirement for your oncologist to give consent for vitamin C IVs. Personally, my oncologist has tried to talk me out of it on multiple occasions and certainly never gave consent. Unless laws differ in various states, you should not need your oncologist's consent.

Tethys41

LaundryQueen said:

First recurrence
felinimom: Sounds you and I are in the same situation with having a recurrence so soon after finishing chemo. I had my last chemo 3/11 and my CA-125 started climbing in June. It is over 200 now but my oncologist is OK with having me "sit on it" until fall when he expects that I will be symptomatic. He doesn't believe in treating on the CA-125 level unless the scan shows something or the patient is symptomatic.

Just wondering where your CA-125 level was when you returned to chemo and if you had any symptoms of ascites. If I didn't check my CA-125, I would swear I was in remission.

My oncologist is planning for me to return to carboplatin as I also responded very well to it (even though I could only keep CA-125 down for 3 months). And your oncologist is opting NOT to do a platinum drug. Seems like there is more of an art than a science to treating cancer.

All this being said, I cannot bear the thought of going back on the full-dose chemo again--my bone marrow could barely hold up to five chemo treatments. I've booked a flight leaving next week to go to a clinic in Tijuana, Mexico for 3 weeks. None of the therapies are "proven" but the proven therapies offered here in the US have a pretty poor success rate anyway. I had considered going out of the country when I was first diagnosed but I was way too ill to be able to do that last year.

The office staff at my family doctor's recently told me that when I was diagnosed last year, there was another women who was diagnosed with the same kind of ovarian cancer with carcinomatosis, same stage & grade as me. They knew that I was doing "everything under the sun" in addition to standard surgery & chemo whereas the other women did everything Western medicine could offer her--full dose chemo and lots of it. Last week when I was in for my blood work, the office staff told me that other women had just died. She was 10 years younger than me, too.

Tahini is made from sesame seeds. There is something in the sesame seeds that increases platelets--sesame seed oil has the same effect. I was taking it all through chemo and never had a problem with low platelets.

Mexico
LQ,
I went to Tijuana for treatment. Which hospital are you considering? I went to Oasis of Hope

carolenk

maggie_wilson said:

tethys

thanx for the info re: why the number of ca 125 decreases with each chemo. i think i asked my doctor if there were any studies that showed additional chemos contributed to more cures, and i believe she said no. though now i'm not so sure. still, i'm hoping that the extra chemos you had will effect a cure, or at the least, a nice long remission. she did say that most oncologists believe that the more chemo, the better; it's just that most women can't tolerate more than 6 cycles.

that's so interesting re: tahini: i'm getting some today. i know my platelets will be fine by next monday; i just need them to be fine for the following monday, if possible, so i can be through with chemo--at least for a long time. i wish my doctor has okayed vitamin c iv for going through my chemo. i'm going to speak with her in depth re: pursuing high dose vitamin c iv, as soon as i'm done with chemo. most places here, i'm told, do require your doctor's consent for vitamin c treatment. i can't imagine why she wouldn't agree, but who can tell?

in any case, i declined chemo yesterday because my platelets were a little low, but the trend was up, which is why my doctor and nurse thought it would be ok to have it. i certainly did not, especially since it was nearly a "given" that i'd have to skip the following week because of low platelets. why on earth would i have chemo when my platelets are low and feel even worse, plus miss the next one, have additional labs and the possibility of a transfusion? made no sense to me. i didn't speak to my doctor directly. and i know she wouldn't have pushed me to have it, which i feel the nurse kinda did. more convenient for her, i think.

hoping for the best for you. thanx again for the info.

sisterhood,
maggie

Delayed chemo treatments
Dear Maggie

Just wanted to let you know that I had to take a couple of breaks while I was doing chemo--once was for 7 weeks after I had a bad reaction to taxol and then again for 3 weeks while my neutrophils were too low for treatment. Even though I was not doing chemo for those two breaks, the CA-125 continued to decline. I don't know if that is unusual or not.

Carolen

fellinimom

LaundryQueen said:

First recurrence
felinimom: Sounds you and I are in the same situation with having a recurrence so soon after finishing chemo. I had my last chemo 3/11 and my CA-125 started climbing in June. It is over 200 now but my oncologist is OK with having me "sit on it" until fall when he expects that I will be symptomatic. He doesn't believe in treating on the CA-125 level unless the scan shows something or the patient is symptomatic.

Just wondering where your CA-125 level was when you returned to chemo and if you had any symptoms of ascites. If I didn't check my CA-125, I would swear I was in remission.

My oncologist is planning for me to return to carboplatin as I also responded very well to it (even though I could only keep CA-125 down for 3 months). And your oncologist is opting NOT to do a platinum drug. Seems like there is more of an art than a science to treating cancer.

All this being said, I cannot bear the thought of going back on the full-dose chemo again--my bone marrow could barely hold up to five chemo treatments. I've booked a flight leaving next week to go to a clinic in Tijuana, Mexico for 3 weeks. None of the therapies are "proven" but the proven therapies offered here in the US have a pretty poor success rate anyway. I had considered going out of the country when I was first diagnosed but I was way too ill to be able to do that last year.

The office staff at my family doctor's recently told me that when I was diagnosed last year, there was another women who was diagnosed with the same kind of ovarian cancer with carcinomatosis, same stage & grade as me. They knew that I was doing "everything under the sun" in addition to standard surgery & chemo whereas the other women did everything Western medicine could offer her--full dose chemo and lots of it. Last week when I was in for my blood work, the office staff told me that other women had just died. She was 10 years younger than me, too.

Tahini is made from sesame seeds. There is something in the sesame seeds that increases platelets--sesame seed oil has the same effect. I was taking it all through chemo and never had a problem with low platelets.

CA125 and CT scan
My CA125 was ~75 (from a low of <5)and a CT scan ordered by my family doc showed a mass near the rectum. My onco doc had a PET done and compared it to the one in early May and the mass was there and now larger and the PET showed signs of cancer in that area. It made sense, because I've been having a hard time passing gas or having a BM.

I had chemo #2 today - my blood counts were good. Not due for a CA125 for a few more weeks and I have appt with the onco doc in early September to review how I'm responding.

I believe in my doctors and their staff. I know everyone has to do what they think is best for their bodies. I'm hoping that I get good results from this drug.

LaundryQueen

Tethys41 said:

Mexico
LQ,
I went to Tijuana for treatment. Which hospital are you considering? I went to Oasis of Hope

Immunity Therapy Center
This clinic offers stem cell therapy, hyperthermia & sonobionic therapy. I've been looking into these therapies individually and I would have to travel to China or Korea if they were not available in Mexico. The program is for 3 weeks.

I guess it is just a leap of faith for me as there are no guarantees for someone with late-stage ovarian cancer--especially with an aggressive case like mine.

LQ

Tethys41

LaundryQueen said:

Immunity Therapy Center
This clinic offers stem cell therapy, hyperthermia & sonobionic therapy. I've been looking into these therapies individually and I would have to travel to China or Korea if they were not available in Mexico. The program is for 3 weeks.

I guess it is just a leap of faith for me as there are no guarantees for someone with late-stage ovarian cancer--especially with an aggressive case like mine.

LQ

Guarantees
Frankly, there are no guarantees for anyone. I think what you are doing is great. My experience in Mexico was very positive. They can do so much more down there than they can here because they are not hamstrung by the FDA. The doctors down there talk so positively about successful treatment. They see the positive results of their work every single day.