when is OVCA actually diagnosed? how often should CA125 be done?

madeline236

Hello everyone,

I don't know if I have a right to post here as I don't have an official diagnosis of ovarian cancer. That is actually one of my questions - since it cannot be diagnosed until surgery as biopsy is not recommended, is that the only time I will get a diagnosis of OVCA or do people get one sooner?

I am 39 and BRCA positive (strong family history of breast cancer, so I know lots about that, but no one has had OVCA). I have had regular transvaginal ultrasounds and CA125 tests for about 6-7 years due to my high risk status. My normal CA125 is 15. I've had cysts come and go, none suspicious or stressful.

I got pregnant late August and my dr sent me for a dating ultrasound (transvaginal). It found everything was fine, including my ovaries. 10 days later, I miscarried and was sent for another transvaginal ultrasound to confirm everything was gone. This one found a 2cm solid, vascular nodule on my right ovary. This led to a CA125 which is 139. I know CA125 can rise during first trimester, but everything I've read is that it should be more in the 50 range at that time.

I have been having symptoms of OVCA daily for about 2 months, but these overlap a bit with pregnancy symptoms, so I wasn't concerned initially. Predominantly: (1) Now I have daily right-side pelvic pain and it's getting worse. Pain level of a 1-2 last month is now a 3-4. and (2) I feel bloated daily and cannot wear button up pants but have no weight change. Other symptoms come and go (fatigue, constipation, back pain, indigestion).

I've been referred to gyno/oncology and for an MRI but will not even hear when those appointments will be for a week and likely the appointments will not be for about a month. Should I ask my dr for a repeat CA125 test in the interim? I know serial results are useful, but how far apart should they be taken? Anything else I should be requesting or could be doing while I wait?

Thanks for being willing to share your knowledge and experiences. You are all brave and strong!

 

LorettaMarshall

Madeline~Don't wait around~Push to be seen now!

 Good morning Madeline

 You have every right to be overly concerned.  Find a good gynecologic/oncologist that will see you “sooner rather than later.”  There is no ideal time to be tested for Ovarian Cancer, just when you have unusual pains of any kind.  I went to the ER with groin pain, a small nodule on the left hand side below my waistline that moved around a bit, and a slight bit of nausea.  No real intense pain that could be measured.  This all happened in a matter of days.  I thought perhaps I had a hernia. 

 My CT scan at my local hospital revealed Peritoneal Carcinomatosis, meaning that multiple cancerous tumors were floating around in my abdominal cavity.  A SECOND OPINION revealed it to be in my Ovaries as well.  The first diagnosis was already Stage IV, but the new assessment by PET/CT revealed live activity in my ovaries as well.  Exploratory surgery performed there at UPMC revealed tumors too large and too numerous for surgery at that time.  (December 2012).

 I had an appendectomy at age 12, and a hysterectomy with only the uterus removed at age 36.  But I was advised by University of Pittsburgh Medical Center to first have Chemotherapy.  I came home and started a series of Carboplatin/Taxol treatments in early February 2013.   That was effective enough for me to have Cytoreductive surgery on July 1, 2013.  At that time I had my spleen, gallbladder, ovaries, fallopian tubes, omentum and sections of my intestines removed.  It is a major operation, but Ovarian Cancer Stage IV is terminal at some point, and often goes undetected till it is past time to stop it in its tracks.  Don’t want to scare you, but time is of the essence.  Time and cancer wait for no man or woman.

 Yesterday, I started my third series of chemo/ same formula.  This time it will be not as effective and more toxic.  That’s just the way it is, much like antibiotics.  The more you use them, the more your body becomes accustomed to it, and they don’t work as well.  But at this time, I am having such a good quality of life that I will go ahead and “suffer through another round.”  But there will come a time, when chemo will not help.

 So my advice to you is to find a competent doctor that will not put you off, and then HAVE A SECOND OPINION, before you accept recommendations.  Sometimes doctors differ, while at other times they confirm your diagnosis.  But often the case is that on a second opinion, things are more serious than the first set believed.

  Also if you go to a hospital, check out the location and their experience in treating your SPECIFIC CANCER.  No two docs are alike and no two hospitals have equally trained docs or the latest equipment for detecting the cancer.

 As for the CA125 count, anything up to 35 is normal.  No need to seek out someone to just perform another CA125 test.  That is not the only criteria, although it is a “tumor marker.”  Higher than 35 can be indicative of something serious.  However, I have a low CA 125 count and I have serious spread of cancer in several places.  So the higher the number doesn’t mean it is more serious than a lower number.  Each person will measure differently with a different diagnosis.    My latest is something like 340 and I have extensive spread.

 Others range in the thousands, and do not have the same spread.  So CA125 is not the only determinant.  There are several tests that should be performed.  My CA125 count is taken each time I consult with my oncologist on a monthly basis.  So whomever you choose to consult, will conduct their own CA125 test along with a CBC (Complete blood count). A consistently rising number is something to be concerned about.   My count was 8 in December 2015, now the rise is substantial by comparison. 

  Below my name are some references that will inform you more about Ovarian cancer.  Anytime you feel something new and different in your body is when you should go immediately and have it checked out.

 And one can have Ovarian cancer even if they have previously had their ovaries removed because the same type of cells that cover the ovaries can slough off and go their separate way and choose to become cancerous on their own.  And docs now suspect that the cancer can begin in the Fallopian tubes.  So don’t settle for “piece work”.  If surgery is warranted, please have them remove everything.   Uterus, ovaries and tubes.  Moreover, the other organs that were called “non essential” that were located in my Peritoneum were removed so as to prevent further spread to those areas. 

 So while not intended to give you a diagnosis, I can tell you that you should get going now.  Don’t wait for months.  You only have one body, but the docs have hundreds of them waiting in his office.  Don’t settle for a “we can see you in a month”.  If nothing else, just show up in the Emergency room like I did.  I thought I had a hernia.  Two hours later, after they performed a CT scan, I had Stage IV Peritoneal cancer, later confirmed by my second opinion to be Ovarian Cancer as well.  Either diagnosis is treated with the same chemo basically.

 The surgery was called Cytoreductive Surgery (CRS), commonly called “debulking”.    There are different things that may be done during the surgery, including Heated Intraperitoneal Chemo infusions, but you’re not there yet.  That would be determined at the time of any surgery that you may or may not be having.  But that comes after a thorough diagnosis. 

 So yes, you’re in the right place, and you have every right to be concerned.

 Hope you find the best place to be seen, and treated if surgery is necessary.  And a hint,--close to home is not the first criteria.  Go where the experienced surgeons are, please! Check in anytime.  Plenty of advice and experiences will be found here and eager to help.

 Loretta

 Peritoneal Carcinomatosis/Ovarian Cancer Stage IV

__________________________________________________________

 1.  http://news.cancerconnect.com/ovarian-cancer-screening-prevention/

 “ …HEREDITY AND GENETIC FACTORS

 An estimated 5-10% of ovarian cancers are due to inherited gene mutations. Women with mutations in the BRCA1 or BRCA2 genes, for example, have a high risk of both breast and ovarian cancer. Estimates of the lifetime risk of ovarian cancer among women with a BRCA1 or BRCA2 gene mutation range from 10% to 68%.[2] Preventive surgery to remove the ovaries before cancer develops is one approach to reduce the risk of ovarian cancer among women at high risk of the disease.

In addition, even among women without a BRCA1 or BRCA2 mutation, those with a family history of ovarian cancer (particularly in a close relative such as a mother, sister, or daughter) are at increased risk of developing the disease…

  remains unknown.

 Annual Pelvic Examination: Currently, the most widely utilized way to detect ovarian cancer is to undergo a complete gynecologic examination at least once per year. Because ovarian cancers begin deep in the pelvis, they often do not cause any symptoms until they are at an advanced stage. In order to improve outcomes for women with ovarian cancer, the disease has to be diagnosed early, before it spreads.

 Pay Attention to Symptoms: According to a consensus statement developed by the American Cancer Society, the Gynecologic Cancer Foundation, and the Society of Gynecologic Oncologists, certain symptoms are more likely to occur in women with ovarian cancer than women in the general population:

 Bloating

Pelvic or abdominal pain

Difficulty eating or feeling full quickly

Urinary symptoms (urgency or frequency)

• Women who experience these symptoms almost daily for more than a few weeks are encouraged to see a doctor, preferably a gynecologist. [13]

   

  Transvaginal ultrasound plus CA-125 testing: For women who have a BRCA1 or BRCA2 mutation, ovarian cancer screening using a combination of transvaginal ultrasound and serum CA-125 testing may be recommended, even in the absence of firm evidence that it reduces ovarian cancer mortality.[14] Women with a BRCA1 or BRCA2 mutation are advised to talk with their physician about the optimal approach to risk reduction or surveillance.

   

  STRATEGIES TO IMPROVE SCREENING AND EARLY DETECTION

 Potential approaches to screening for ovarian cancer include transvaginal ultrasound and measurement of serum CA-125 levels, but thus far there is no firm evidence that these tests reduce ovarian cancer mortality. To improve upon currently available tests, researchers are exploring new approaches to early detection, such as combining several different blood tests,[15] or using a combination of blood test and symptom results.[16]…”

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 2.  http://news.cancerconnect.com/types-of-cancer/ovarian-cancer/

 I would read everything on this page, and go through the steps for staging and treatment options.

 _______________________________________________________________________

3.  http://www.cancer.org/cancer/ovariancancer/detailedguide/ovarian-cancer-what-is-ovarian-cancer

 “What is ovarian cancer?

 Cancer starts when cells in the body begin to grow out of control. Cells in nearly any part of the body can become cancer, and can spread to other areas of the body. To learn more about how cancers start and spread, see What Is Cancer?

Ovarian cancer begins in the ovaries. Ovaries are reproductive glands found only in females (women). The ovaries produce eggs (ova) for reproduction. The eggs travel through the fallopian tubes into the uterus where the fertilized egg implants and develops into a fetus. The ovaries are also the main source of the female hormones estrogen and progesterone. One ovary is on each side of the uterus in the pelvis.

 The ovaries are made up of 3 main kinds of cells. Each type of cell can develop into a different type of tumor:

 Epithelial tumors start from the cells that cover the outer surface of the ovary. Most ovarian tumors are epithelial cell tumors.

• Germ cell tumors start from the cells that produce the eggs (ova).

• Stromal tumors start from structural tissue cells that hold the ovary together and produce the female hormones estrogen and progesterone.

  Most of these tumors are benign (non-cancerous) and never spread beyond the ovary. Benign tumors can be treated by removing either the ovary or the part of the ovary that contains the tumor.

  Malignant (cancerous) or low malignant potential ovarian tumors can spread (metastasize) to other parts of the body and can be fatal. Their treatment is discussed later in this document…”

  ________________________________End of references___________________

   

 

madeline236

Thanks for responding. I'm in

Thanks for responding. I'm in Canada where we are not able to get 2nd opinions and change providers easily. My file has gone through the provincial central intake office and was assigned to the cancer centre they believe is the best fit given my situation and knowing the wait times / drs / etc.

I hate not knowing enough and feeling like I cannot do more when my gut and the signs are saying 'bad news'.

I will look at the links you provided. Information is power in my opinion and I am aiming to become an expert on this.

 

LorettaMarshall

madeline236 said:

Thanks for responding. I'm in

Thanks for responding. I'm in Canada where we are not able to get 2nd opinions and change providers easily. My file has gone through the provincial central intake office and was assigned to the cancer centre they believe is the best fit given my situation and knowing the wait times / drs / etc.

I hate not knowing enough and feeling like I cannot do more when my gut and the signs are saying 'bad news'.

I will look at the links you provided. Information is power in my opinion and I am aiming to become an expert on this.

 

Madeline~Sorry U have 2 wait~Hope U can B seen SOON!

Hello again Madeline

Unfortunately, when one has universal health care, it has drawbacks.  Options aren't as many, and the patient can't always be the one to decide where to go.  I'm sorry you can't have the second opinion.  And the long wait is not good news either.  My husband and I have talked to cancer friends in both Canada, and Britain, and they do NOT have as many choices as we have in the states. 

I am adamantly opposed to the state dictating to the doctors what they can do for their patients.  I've yet to meet a doctor here in the U.S. that is happy with the turn of events of late in this country.  Nope, when folks sign up for "Affordable Health Care"...OFTEN they can neither keep their doctor, nor their health plan, and many health exchanges have withdrawn from states they originally agreed to serve.  They are losing money, and it has caused our own private health plans to increase to help subsidize the money companies are losing.  It takes a lot of our money to pay for health care premiums but at least I know I am getting great health care, and I am #1 when I go into a doctor's office.

 So please educate yourself, so you can ask intelligent questions.  I remember one fella in Britain told us that he had to go to the clinic, pick a # and get in line.  He was never assured that he would get to see the doctor that he last saw.  His record said Esophageal Cancer.  But when he went back the next month, he found those were not his records, and he did NOT have Esophageal Cancer.  Unfortunately, some other fella was walking around with a diagnosis of cancer, and did not know it.  This fella railed against the British system. 

One thing for certain, you can write here and ask questions and someone will answer you.  We have many ladies who post here who will be able to help when you've received a diagnosis.  I will tell you that the things you've described give me cause to think that something serious is probably going on, but I'm not a doctor--Just someone who has been upclose and personal with cancer since 2002, first with my husband's cancer, and now my own in 2012. 

So I wish you well, and be sure to ask lots of questions.  My doctor allows us to use a camera phone and record our office visits.  Because doctors run right through some awful big words.  I always say, "And how do you spell that?"  He takes all the time we need together.  Sometimes he is running behind schedule, and I never complain.  I think to myself, well I'm sure others have been sitting in another room waiting for me to quit talking.  So I never complain. 

Wishing for you a quick appointment so you can put your mind at ease.  There's always a possibility that it may not be as bad as we think.  But for now, do your homework, and you'll know if the doctor knows what HE/SHE is talking about.  Patients who are informed about their own situation will get the best answers from their doctors.

Loretta

 

Tethys41

Delay

I am sorry you have to wait to be seen.  That is very frustrating and stressful, I am sure.  If you are locked into your system of health care, I don't know that testing your CA-125 will be of much help to you, unless it would get you in to see a specialist any sooner if you number went up.  If not, it doesn't seem that it is worth is.  I am a huge advocate for integrative and alternative approaches to cancer.  I made it through front line chemo and acheived remission, even though my doctor said I would not.  And I have been in remission for 7 1/2 years.  I too am BRCA positive.  I know that diet plays a very large role when it comes to cancer.  Essentially, cancer is a result of malnutirion and toxic exposures, much of which is related to food.  While you are waiting for your appointment, it certainly can't hurt to clean up your diet, eating organic and cutting out as much sugar and carbohydrates as possible.  A ketogenic diet is showing promising results when it comes to cancer.  I hope you find a way to keep calm during your wait to see a specialist.  Good luck to you.

madeline236

waiting and researching

Thanks ladies. If my CA125 went up, my file would be triaged again and likely move up the 'urgent' list. Blood was taken Oct 7 for the last one and I finally found one study that did the CA125 every 28 days so I think I may ask my GP for another one at that interval. It cannot hurt as far as I see it.

My GP also thought I might get an MRI in the next week or two and those results could have the same effect re triage and become more urgent if necessary. I still need to research and get to know the differences between MRI, CT, and PET scans as I don't know why I'm being sent for an MRI and not one of the other two. I have seen people talk more about CT and PET scans on forums so I'm hoping they arent' giving me the wrong scan.

I have never heard of a ketogenic diet and will look it up. Generally I do eat healthy, but of course, there is always room for improvement. I lost 60 lbs after having kids as I knew I needed to be healthy and set a good example for them and did this via diet change. Not easy but the right decision in the end.

At least I can do more research this week while I wait and so I'm ready for the appointment. I always go to medical appointments with a written out list of questions.

It is great that OVCA is not common and yet it totally sucks for that exact reason as I'm sure that's one of the reasons we don't have better screening tests. As I have kids who may also have BRCA, I really hope this problem is fixed before they're old enough to have to worry about this.

LorettaMarshall

Madeline~Videos & Oncolink.org reference links re Ovarian Cancer

 Hello again Madeline ~

 There are a multitude of links relative to Ovarian Cancer, but I know you said you wanted to research this cancer, so you would know more about it, in case you were to be diagnosed with it.  So here is an excellent link for you to keep in your “informational folder.”  Incidentally, I have a consultation with my oncologist once a month, and my CA-125 count is constantly monitored.  He doesn’t always become alarmed unless it indicates a steadily-rising count month after month.  And like I’ve said previously, the count doesn’t have to be in the thousands to indicate serious escalation.  So thought I would just add this to the helps that others have provided you as well.  The fact that you have to “wait” certainly adds anxiety and stress.  But meanwhile, you’re smart to know about the “big words” the doc might throw around.  A gynecologic oncologist is always preferable for your treatments, but looks like you’re going to be given a “number!”  Hope you rank high on the list for extensive testing.  I certainly would want the PET/CT scan “Tethys” mentioned.  It shows live activity wherever the cancer may be “hiding!” 

 Wishing you a speedy consultation.

 Loretta

 P.S.  Incidentally I’ve started my third chemo regimen of Carboplatin and Taxol, this past Thursday, and am not feeling well.  So if you don’t hear from me on a timely basis, it will be because I may not feel like monitoring this as closely as in times past.  But there are others who will be here to help.

 ______________________________________________________

1.   https://www.youtube.com/watch?v=d9iOxMFmPlAA video explaining PET Scans and how they are given.  Like he says, drink plenty of fluids after to flush the tracer out of your system. 

2.https://www.youtube.com/watch?v=QYYWs58IvE8

 Another video explaining what happens during a PET scan.  “A wonderful presentation created by GE health care to guide patients through their PET/CT (Positron Emission Tomography / Computed Tomography )scan. This educational and stimulating video illustrates what a person can expect before, after and during their scan.”  Incidentally, you should drink as much water as possible in order to flush your kidneys of this contrast.  And I will tell you that the contrast usually causes me to have diarrhea for the following day at least.  And I always tell the technician that I would like a copy of the disc, and they always accommodate me, and prepare an extra copy for me.  Of course, the evaluation of the scan is done by professionals, and my doctor always schedules a consult to discuss the findings as soon as the report is complete.

3.  https://www.oncolink.org/cancers/gynecologic

4.https://www.oncolink.org/cancers/gynecologic/ovarian-cancer

5. https://www.oncolink.org/cancers/gynecologic/ovarian-cancer/all-about-ovarian-cancer

_______________End of references_______________

Tethys41

Tests

I think it is unusual for a doctor to order an MRI for ovarian cancer.  I don't know that it wouldn't identify all of the cancer present, but it is not the typical test, at least not in the US.  MRIs definitely do detect cancer, as I receive a breast MRI annually, due to my BRCA positive status.  I had only CT scans (kind of a 3D x-ray) during the ovarian cancer incident, but PET scans are a little better.  A PET scan is actually done in conjunction with a CT scan.  For a PET scan, you are injected with radioactive sugar prior to the scan.  Cancer cells absorb sugar at a much higher rate than normal cells, so the radioactive sugar becomes more concentrated in the tumors.  The scan detects where the radioactivity is and then the pattern of what lights up is overlain on the CT scan so that the radiologist can determine the locations and extent of the tumors.  With a CT scan, alone, just as, I would assume, with an MRI, they use some type of contrast that will highlight the tumors. I think, at least for many things, an MRI is better than a CT scan alone.  I think doctors in the US prescribe CTs because they are cheaper. 

Which is kind of a nice segway into the ketogenic diet, which is a very low sugar, low carbohydrate diet.  Cancer cells rely heavily on sugar to produce energy.  They are actually very mutated, poorly functioning normal cells that have started fermenting sugar to survive, instead of through aerobic processes that normal cells carry out.  So, if you eat no sugar and very few carbohydrates (which turn into sugar), you are essentially starving the cancer cells.  

Good luck

madeline236

sorry you need chemo again / question re diet

I'm sorry to read you need chemo again. That's one more thing that the world of cancer needs to find a better way. (1) detecting OVCA early and (2) curing it once found without the side effects of chemo.

I think my GP ordered the MRI because the US report said they found this nodule and to follow up with an MRI. She's a good doctor in my experience and has personal experience with OVCA so I trust her for the most part.

Today is the day my file will be triaged at the cancer centre. As my abdominal pain and bloating are getting worse and my stress level is through the roof, I am hoping to get an early appointment.

That diet makes sense as cancer does like sugar. When my aunt had stage IV breast cancer, she was given 6 months but lived 2 years by drastically changing her diet. I am going to have to do more research on the specifics of it so I can apply it to my life. Would this diet also do anything to prevent cancer?

Tethys41

Keto diet

Madeline, 

Researchers are starting to recognize that a ketogenic diet addresses a number of chronic conditions, including diabetes, epilepsy, and cancer.  It would definitely help with prevention.  But it is a fairly strict diet and, in my opinion, lacks some important nutrients that you would get in a more Paleo style diet.  I am pretty certain that I would have recurred not long after completing treatment if I had not changed my diet drastically and done some other things to live a healthier lifestyle.  It seems to be working.  I suspect you are asking on behalf of your children?  Definitely eating a Paleo diet, organic, with grass fed and finished meats is a very healthy option and my guess is that if everyone ate this way, the amount of disease in our society would be drastically reduced.  The typical American diet has far too many carbs and sugar, not enough nutrients and way too much processed food.  Chronic illness was far less prevelent in our grandparent's time and they ate a Paleo style diet.  You might enjoy a book that explains why this works.  Pottenger's Prophecy: How Food Resets Genes for Wellness or Illness.  I have a lot of other references too.  Just let me know what you'd like to know.  

madeline236

thanks. will let you know if I have further diet questions

I will do some more internet research on the Kato and Paleo diet and see. I do believe that diet change can make huge differences but it also requires a learning curve and commitment. I will have to consider it closely. I'm stressed now and to add to my stress with tons of change wouldn't be great and I'm not sure if my family would support this (ie switch to it too) and I certainly do not want a household where I have to prepare my food and then the family's food. Life is too short and busy for  that.

I will let you know if I have questions after reading more.

So I called the Cancer Centre yesterday and they did triage my file as urgent. I am seeing the head of the department of gyno-oncology Nov 22 and before that they will re-do my CA125 and a TVUS so the most current information is available at that appointment. I'm glad things are moving forward now, and quickly by Canadian standards, but it's still a long wait until Nov 22.

Rebekah77

Hey Madeline

How did it go with the Cancer Centre!  Haven't heard from you, i hope things are goin gok!! Sending hugs!

Chicky1941

Tethys41 said:

Delay

I am sorry you have to wait to be seen.  That is very frustrating and stressful, I am sure.  If you are locked into your system of health care, I don't know that testing your CA-125 will be of much help to you, unless it would get you in to see a specialist any sooner if you number went up.  If not, it doesn't seem that it is worth is.  I am a huge advocate for integrative and alternative approaches to cancer.  I made it through front line chemo and acheived remission, even though my doctor said I would not.  And I have been in remission for 7 1/2 years.  I too am BRCA positive.  I know that diet plays a very large role when it comes to cancer.  Essentially, cancer is a result of malnutirion and toxic exposures, much of which is related to food.  While you are waiting for your appointment, it certainly can't hurt to clean up your diet, eating organic and cutting out as much sugar and carbohydrates as possible.  A ketogenic diet is showing promising results when it comes to cancer.  I hope you find a way to keep calm during your wait to see a specialist.  Good luck to you.

My wife's recurrence of ovarian cancer...

Hello...I am new to this website as of tonite.  I joined because my Chinese wife is having a recurrence of her ovarian cancer.  Four years ago she was diagnosed, had 3 chemo Rx's pre-op., surgery, 3 chemo Rx's post-op., and some kind of immune system treatment.  She had been cancer free until her CA-125 going up and had a CT scan which showed two one inch peri-aortic  lymph nodes that were biopsied and showed to be cancerous.  Her oncologist told us she could do nothing as sometimes such small nodes stay in one place and the patient can live for many years, or they can get bigger and cause problems without another six rounds of chemo Rx...so it's a crap shoot.  He said if it was his wife, he would recommend the six rounds of two kinds of chemo along with Avastin which stops the blood supply to cancer cells thereby killing them.   I too am a huge advocate for integrative and alternative approaches to cancer, but we decided to do the chemo.  She is a vegan and other than the cancer is very healthy and very active.  So along with the chemo, I've been given her some alternative supplements which I researched and discovered to stop and/or control the cancer which I hope will permanently.  She is doing what you said in your post, but I want to do more to get her away from the acid side of the pH balance, so I'm going to try to get her on a ketogenic diet, altho she is probably very close to that now.  She's had only one treatment so far and has tolderated fairly well except for developing a sore mouth a couple days ago and now her hair has been falling out, so she wants to get it all cut off, since it's falling everywhere.  She had the BRCA test and it showed negative.  She has cut out all sugar, but she likes rice and pasta, but I'm going to try and wean her off of that.  I've heard that Lysine is helpful for the sore mouth as so far nothing that we've tried as far as mouth rinses and topical anesthetics has really helped.  Any other suggestions you would be willing to give me so I can help her would be very much appreciated since you have been in remission for a long time.  I hope you continue to stay in that remission and live a long and a happy life.  Thank you very much...RJ

LorettaMarshall

Chicky1941 said:

My wife's recurrence of ovarian cancer...

Hello...I am new to this website as of tonite.  I joined because my Chinese wife is having a recurrence of her ovarian cancer.  Four years ago she was diagnosed, had 3 chemo Rx's pre-op., surgery, 3 chemo Rx's post-op., and some kind of immune system treatment.  She had been cancer free until her CA-125 going up and had a CT scan which showed two one inch peri-aortic  lymph nodes that were biopsied and showed to be cancerous.  Her oncologist told us she could do nothing as sometimes such small nodes stay in one place and the patient can live for many years, or they can get bigger and cause problems without another six rounds of chemo Rx...so it's a crap shoot.  He said if it was his wife, he would recommend the six rounds of two kinds of chemo along with Avastin which stops the blood supply to cancer cells thereby killing them.   I too am a huge advocate for integrative and alternative approaches to cancer, but we decided to do the chemo.  She is a vegan and other than the cancer is very healthy and very active.  So along with the chemo, I've been given her some alternative supplements which I researched and discovered to stop and/or control the cancer which I hope will permanently.  She is doing what you said in your post, but I want to do more to get her away from the acid side of the pH balance, so I'm going to try to get her on a ketogenic diet, altho she is probably very close to that now.  She's had only one treatment so far and has tolderated fairly well except for developing a sore mouth a couple days ago and now her hair has been falling out, so she wants to get it all cut off, since it's falling everywhere.  She had the BRCA test and it showed negative.  She has cut out all sugar, but she likes rice and pasta, but I'm going to try and wean her off of that.  I've heard that Lysine is helpful for the sore mouth as so far nothing that we've tried as far as mouth rinses and topical anesthetics has really helped.  Any other suggestions you would be willing to give me so I can help her would be very much appreciated since you have been in remission for a long time.  I hope you continue to stay in that remission and live a long and a happy life.  Thank you very much...RJ

RJ~Things I've learned about chemo effects & mouth sores

 Hello “RJ”

 Although you are addressing “Tethys41” relative to diet and alternative treatments, I would just offer one suggestion about mouth sores.  Being now on my 3^rd treatment regimen of Carboplatin and Paclitaxel (Taxol) for Peritoneal Carcinomatosis/Ovarian Cancer Stage IV, I know something about chemo treatments and their effect on our bodies.  When I first began my treatments, my oncologist recommended some things for me to do.  And there are quite a few things I’ve learned since my first chemo in 2013.  Once a fellow named Brian wrote and asked if we had any tips on how to combat chemo effects since his mother was about to begin chemo.  And so as not to write that same long letter, if you’re interested in things I’ve benefitted by, see the link below my name written specifically for him. 

 And all my hair fell out within 3 weeks of each regimen.  So the first time, it was dramatic.  The second time is was not a shock.  The third time around it was no big deal.  I simply took the clippers and shaved my own head.  I had my husband do the back.  Sure it makes me look a bit less feminine, but loose hair on the pillow isn’t something I like either.  I also lost the hair on my eyebrows and eyelashes.  And peripheral neuropathy was a problem, and this time around, I’m having a tingling and a numb feeling in my fingers.  Chemo does effect the nerve endings.  We have to “take the bad along with the good!”  I purchased several wigs, and some false bangs which I wear under turbans, and the nurses didn’t even know I was bald until I “took it off to show them that I really had no hair.”  The bangs have a Velcro strip across the top that adheres to the fabric in the turban.  I’m fine with having no hair, as long as the chemo is killing some of the rapidly-advancing tumors.  But the Lord has blessed me with four years of survival thus far, and so far the “price I’ve paid in suffering and tolerating the chemo, surgery and targeted radiation during that time” is worth it.  I was diagnosed with Peritoneal Carcinomatosis/Ovarian Cancer Stage IV, right out of the gate!  So whatever the stage of your wife’s ovarian cancer is, I’m hoping that her treatments will provide her with a long-time progression free survival.

 In addition the mouth is very sensitive to the chemo and can easily develop mouth sores.  And dental work should be done before or after chemo regimens are completed.  And even when I’m not on a chemo regimen, since I am a cancer patient, my oncologist says I need an antibiotic that is to be taken for at least 3 days, the day before, during, and the day after. 

 My oncologist told me to keep something cold in my mouth at least for the first 24 hours after a chemo treatment.  He suggested sucking on ice chips, popsicles, anything cold, but nothing hot or spicy.  And so I try to sip on some ice chips while I’m in the oncology lab because my treatments last for at least 6 hours. 

 Now just prior to my last treatments which began on October 20, 2016, I went to the dental for an annual checkup.  The dentist knew that I was going to start treatments.  They gave me 3 samples of a product called BIOTENE.  There is a Biotene toothpaste as well.  So she gave me a bottle of the solution, a toothpaste sample, and a Biotene Jel which can be rubbed on the gums.  It’s important to use a soft toothbrush and keep the mouth moist at all times.

 I brush my teeth with a small “soft” toothbrush.  Actually I like the ones that are for children.  I rinse my mouth with a baking soda solution, or the Biotene oral rinse for dry mouth often during the day, and even when I awake during the night.  If you purchase any, the Jel in the tube would be nice addition to the oral rinse solution.  She could carry it in her purse in case her mouth begins to feel dry while she is away from home.  It’s not unusual during chemo treatments to have a “parched feeling” in one’s mouth.  And it’s very important to keep the gums massaged and the tongue brushed as well.  My oncologist prescribes a certain solution if he sees any suggestion of problems in my mouth.  See the Mayo Clinic link for more info about “Magic Mouthwash.”  Your wife’s oncologist will no doubt be familiar with that.   

 Other things that helped me are listed in my letter to Brian.  Hydration is very important, and Neulasta for keeping up the WBC White blood count is very important.  If the count drops below a certain number, the session will have to be “skipped.”  And it’s never good to miss a treatment.  That gives the cancer cells time to regroup.

 And since this is a recurrence for your wife, I would never opt to do nothing, if I had some choices. 

 Below are some informative links relative to peri-aortic lymph nodes.  Personally, I would want to take some kind of treatment, and if your wife’s oncologist were my doctor, I would follow his advice.  I’m not too “hip” on just letting cancerous nodes lie and hope they never get any larger!

 Well, “RJ”, needless to say, we’re never happy to hear of another case of any kind of cancer, but many here are willing to help in any way we can.  And “Tethys41” seems to be a good one for “thinking and acting outside the box.”  She has lots of good info when it comes to alternative treatments and diet suggestions. 

 These are all the suggestions that I have to combat mouth sores, and so far, I haven’t had any in my 4 years of dealing with this cancer.  And, I for one, always say a prayer for whomever I’m writing to, and hope that everything that can be done will be done by the very best doctors available. 

Loretta Marshall

 Peritoneal Carcinomatosis/Ovarian Cancer Stage IV

  P.S.  As if I hadn’t said enough, here is the formula that was prescribed by my oncologist.  With the ingredients listed below, any pharmacist will be able to fill it.  It was quite expensive.  My insurance didn't cover it and it costs $37 a bottle.  But what isn't expensive these days?  And it's priceless when it helps with mouth sores.   I use it when I feel like my throat feels "scratchy."   

It is a prescription called “CLACK’S SOLUTION – 150 ML’S”

                                  Here is the info on the bottle. 

“Swish & swallow 5 milliliters by mouth four times a day if needed for mouth sore pain”

The formula on the bottle reads thus: 

(HYDROCORTISONE 30 MG…..LIDOCAINE 50 ML...NYSTATIN 30 ML…

DIPHENHYDRAMINE 60 ML)

 

   1.  http://csn.cancer.org/node/301646

 Letter to “Brian from the North” re chemo sessions and things that I found helpful.

_________________________________________

 2.   https://www.biotene.com/dry-mouth-products

Company ad touting the benefits of an oral rinse that my dentist recommended

______________________________________________________________

3.   http://www.mayoclinic.org/tests-procedures/chemotherapy/expert-answers/magic-mouthwash/faq-20058071

 “I have mouth sores from receiving chemotherapy. I've heard that something called "magic mouthwash" might help. What is it?

 Answers from Timothy J. Moynihan, M.D.

 Magic mouthwash is the term given to a solution used to treat mouth sores (oral mucositis) caused by some forms of chemotherapy and radiation therapy.

 Oral mucositis can be extremely painful and can result in an inability to eat, speak or swallow. Magic mouthwash provides some relief.

 There are several versions of magic mouthwash. Some are available in pre-measured kits (First-Mouthwash BLM, First-BXN Mouthwash) that can be mixed together by pharmacists, while others are prepared to order by a pharmacist. If it's determined that magic mouthwash might be helpful, your doctor will write a prescription.

 Magic mouthwash usually contains at least three of these basic ingredients:

•  An antibiotic to kill bacteria around the sore

• An antihistamine or local anesthetic to reduce pain and discomfort

• An antifungal to reduce fungal growth

• A corticosteroid to treat inflammation

• An antacid that helps ensure the other ingredients adequately coat the inside of your mouth…”

• _______________________________________________

 4.   https://www.ncbi.nlm.nih.gov/pubmed/19955908

 Lymph node-positive stage IIIC ovarian cancer: a separate entity?

 Berek JS¹. - Author information – Abstract - INTRODUCTION:

 “Ovarian cancer spreads via the retroperitoneal lymphatics, and these lymph nodes frequently contain metastasis. A subset of patients whose disease was classified as stage IIIC has retroperitoneal lymph node metastases in the pelvic and/or para-aortic lymph nodes without intraperitoneal carcinomatosis and was upstaged from stage I to IIIB diseases based on these findings. Patients undergoing cytoreductive surgery for advanced-stage ovarian cancer undergo concomitant retroperitoneal lymphadenectomy in an effort to improve their survival…”

______________________________________________________

 5.   https://www.ncbi.nlm.nih.gov/pubmed/2661088

 Baillieres Clin Obstet Gynaecol. 1989 Mar;3(1):143-55.

 Lymph node metastasis and retroperitoneal lymphadenectomy in ovarian cancer.

 Wu PC, Lang JH, Huang RL, Qu JY, Wang H, Tang MY, Zhao RG, Lian LJ.

 Abstract

 “While clinicians are devoting themselves to the study of the behaviour of ovarian cancer as well as to the search for more effective therapeutic modalities, little attention has been paid to an important route of metastasis in this group of diseases: retroperitoneal spread through the lymphatic pathway…”

________________________________________________________

 6.   https://www.ncbi.nlm.nih.gov/pubmed/2661090

 The effect of chemotherapy on lymph node metastases in ovarian cancer

 ________________________________________

 7.   https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4195296/

 Role of lymphadenectomy for ovarian cancer

 ______________________________________________

 8.   http://www.chemocare.com

"RJ", You didn’t specifically name the chemo agents, but here is a link that will give you all the side effects of any drug that you key in.

 ___________________End of references______________

  

Chicky1941

LorettaMarshall said:

RJ~Things I've learned about chemo effects & mouth sores

 Hello “RJ”

 Although you are addressing “Tethys41” relative to diet and alternative treatments, I would just offer one suggestion about mouth sores.  Being now on my 3^rd treatment regimen of Carboplatin and Paclitaxel (Taxol) for Peritoneal Carcinomatosis/Ovarian Cancer Stage IV, I know something about chemo treatments and their effect on our bodies.  When I first began my treatments, my oncologist recommended some things for me to do.  And there are quite a few things I’ve learned since my first chemo in 2013.  Once a fellow named Brian wrote and asked if we had any tips on how to combat chemo effects since his mother was about to begin chemo.  And so as not to write that same long letter, if you’re interested in things I’ve benefitted by, see the link below my name written specifically for him. 

 And all my hair fell out within 3 weeks of each regimen.  So the first time, it was dramatic.  The second time is was not a shock.  The third time around it was no big deal.  I simply took the clippers and shaved my own head.  I had my husband do the back.  Sure it makes me look a bit less feminine, but loose hair on the pillow isn’t something I like either.  I also lost the hair on my eyebrows and eyelashes.  And peripheral neuropathy was a problem, and this time around, I’m having a tingling and a numb feeling in my fingers.  Chemo does effect the nerve endings.  We have to “take the bad along with the good!”  I purchased several wigs, and some false bangs which I wear under turbans, and the nurses didn’t even know I was bald until I “took it off to show them that I really had no hair.”  The bangs have a Velcro strip across the top that adheres to the fabric in the turban.  I’m fine with having no hair, as long as the chemo is killing some of the rapidly-advancing tumors.  But the Lord has blessed me with four years of survival thus far, and so far the “price I’ve paid in suffering and tolerating the chemo, surgery and targeted radiation during that time” is worth it.  I was diagnosed with Peritoneal Carcinomatosis/Ovarian Cancer Stage IV, right out of the gate!  So whatever the stage of your wife’s ovarian cancer is, I’m hoping that her treatments will provide her with a long-time progression free survival.

 In addition the mouth is very sensitive to the chemo and can easily develop mouth sores.  And dental work should be done before or after chemo regimens are completed.  And even when I’m not on a chemo regimen, since I am a cancer patient, my oncologist says I need an antibiotic that is to be taken for at least 3 days, the day before, during, and the day after. 

 My oncologist told me to keep something cold in my mouth at least for the first 24 hours after a chemo treatment.  He suggested sucking on ice chips, popsicles, anything cold, but nothing hot or spicy.  And so I try to sip on some ice chips while I’m in the oncology lab because my treatments last for at least 6 hours. 

 Now just prior to my last treatments which began on October 20, 2016, I went to the dental for an annual checkup.  The dentist knew that I was going to start treatments.  They gave me 3 samples of a product called BIOTENE.  There is a Biotene toothpaste as well.  So she gave me a bottle of the solution, a toothpaste sample, and a Biotene Jel which can be rubbed on the gums.  It’s important to use a soft toothbrush and keep the mouth moist at all times.

 I brush my teeth with a small “soft” toothbrush.  Actually I like the ones that are for children.  I rinse my mouth with a baking soda solution, or the Biotene oral rinse for dry mouth often during the day, and even when I awake during the night.  If you purchase any, the Jel in the tube would be nice addition to the oral rinse solution.  She could carry it in her purse in case her mouth begins to feel dry while she is away from home.  It’s not unusual during chemo treatments to have a “parched feeling” in one’s mouth.  And it’s very important to keep the gums massaged and the tongue brushed as well.  My oncologist prescribes a certain solution if he sees any suggestion of problems in my mouth.  See the Mayo Clinic link for more info about “Magic Mouthwash.”  Your wife’s oncologist will no doubt be familiar with that.   

 Other things that helped me are listed in my letter to Brian.  Hydration is very important, and Neulasta for keeping up the WBC White blood count is very important.  If the count drops below a certain number, the session will have to be “skipped.”  And it’s never good to miss a treatment.  That gives the cancer cells time to regroup.

 And since this is a recurrence for your wife, I would never opt to do nothing, if I had some choices. 

 Below are some informative links relative to peri-aortic lymph nodes.  Personally, I would want to take some kind of treatment, and if your wife’s oncologist were my doctor, I would follow his advice.  I’m not too “hip” on just letting cancerous nodes lie and hope they never get any larger!

 Well, “RJ”, needless to say, we’re never happy to hear of another case of any kind of cancer, but many here are willing to help in any way we can.  And “Tethys41” seems to be a good one for “thinking and acting outside the box.”  She has lots of good info when it comes to alternative treatments and diet suggestions. 

 These are all the suggestions that I have to combat mouth sores, and so far, I haven’t had any in my 4 years of dealing with this cancer.  And, I for one, always say a prayer for whomever I’m writing to, and hope that everything that can be done will be done by the very best doctors available. 

Loretta Marshall

 Peritoneal Carcinomatosis/Ovarian Cancer Stage IV

  P.S.  As if I hadn’t said enough, here is the formula that was prescribed by my oncologist.  With the ingredients listed below, any pharmacist will be able to fill it.  It was quite expensive.  My insurance didn't cover it and it costs $37 a bottle.  But what isn't expensive these days?  And it's priceless when it helps with mouth sores.   I use it when I feel like my throat feels "scratchy."   

It is a prescription called “CLACK’S SOLUTION – 150 ML’S”

                                  Here is the info on the bottle. 

“Swish & swallow 5 milliliters by mouth four times a day if needed for mouth sore pain”

The formula on the bottle reads thus: 

(HYDROCORTISONE 30 MG…..LIDOCAINE 50 ML...NYSTATIN 30 ML…

DIPHENHYDRAMINE 60 ML)

 

   1.  http://csn.cancer.org/node/301646

 Letter to “Brian from the North” re chemo sessions and things that I found helpful.

_________________________________________

 2.   https://www.biotene.com/dry-mouth-products

Company ad touting the benefits of an oral rinse that my dentist recommended

______________________________________________________________

3.   http://www.mayoclinic.org/tests-procedures/chemotherapy/expert-answers/magic-mouthwash/faq-20058071

 “I have mouth sores from receiving chemotherapy. I've heard that something called "magic mouthwash" might help. What is it?

 Answers from Timothy J. Moynihan, M.D.

 Magic mouthwash is the term given to a solution used to treat mouth sores (oral mucositis) caused by some forms of chemotherapy and radiation therapy.

 Oral mucositis can be extremely painful and can result in an inability to eat, speak or swallow. Magic mouthwash provides some relief.

 There are several versions of magic mouthwash. Some are available in pre-measured kits (First-Mouthwash BLM, First-BXN Mouthwash) that can be mixed together by pharmacists, while others are prepared to order by a pharmacist. If it's determined that magic mouthwash might be helpful, your doctor will write a prescription.

 Magic mouthwash usually contains at least three of these basic ingredients:

•  An antibiotic to kill bacteria around the sore

• An antihistamine or local anesthetic to reduce pain and discomfort

• An antifungal to reduce fungal growth

• A corticosteroid to treat inflammation

• An antacid that helps ensure the other ingredients adequately coat the inside of your mouth…”

• _______________________________________________

 4.   https://www.ncbi.nlm.nih.gov/pubmed/19955908

 Lymph node-positive stage IIIC ovarian cancer: a separate entity?

 Berek JS¹. - Author information – Abstract - INTRODUCTION:

 “Ovarian cancer spreads via the retroperitoneal lymphatics, and these lymph nodes frequently contain metastasis. A subset of patients whose disease was classified as stage IIIC has retroperitoneal lymph node metastases in the pelvic and/or para-aortic lymph nodes without intraperitoneal carcinomatosis and was upstaged from stage I to IIIB diseases based on these findings. Patients undergoing cytoreductive surgery for advanced-stage ovarian cancer undergo concomitant retroperitoneal lymphadenectomy in an effort to improve their survival…”

______________________________________________________

 5.   https://www.ncbi.nlm.nih.gov/pubmed/2661088

 Baillieres Clin Obstet Gynaecol. 1989 Mar;3(1):143-55.

 Lymph node metastasis and retroperitoneal lymphadenectomy in ovarian cancer.

 Wu PC, Lang JH, Huang RL, Qu JY, Wang H, Tang MY, Zhao RG, Lian LJ.

 Abstract

 “While clinicians are devoting themselves to the study of the behaviour of ovarian cancer as well as to the search for more effective therapeutic modalities, little attention has been paid to an important route of metastasis in this group of diseases: retroperitoneal spread through the lymphatic pathway…”

________________________________________________________

 6.   https://www.ncbi.nlm.nih.gov/pubmed/2661090

 The effect of chemotherapy on lymph node metastases in ovarian cancer

 ________________________________________

 7.   https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4195296/

 Role of lymphadenectomy for ovarian cancer

 ______________________________________________

 8.   http://www.chemocare.com

"RJ", You didn’t specifically name the chemo agents, but here is a link that will give you all the side effects of any drug that you key in.

 ___________________End of references______________

  

Dear Loretta,

Thank you very much for your reply with all of the useful info re. help for my wife's sore mouth.  Her first Rx was performed  at the Munson Oncology Center in Traverse City, MI.  She got Zofran 16 mg., Benadryl 25 mg., Famotidine 20 mg., Dexamethosone 10 mg. all IV prior to the agents which were:  Avastin 800 mg., Carboplatin 400 mg., Gemcitabine 1600 mg. all IV with normal saline IV for flush.  At first she had some constipation which we took care of and then she had been doing fine until a couple days ago when the mouth sores started.  We got her some topical oral anesthetics plus that script mouth wash for that plus an antibiotic which she has been taking for that with only fair relief.  I found out that Lysine 1000 mg. tabs and Zinc Lozenges are also helpful for that, so I'm getting her some soon to take.  She is 57 y/o Chinese lady who had never been sick before and who tries to walk a mile or two every day depending on our U.P. weather, and she stays busy here at home using a serger and sewing machine to make U.P. Chooks which are very warm for this time of year.  You can google U.P. Chooks to find out more about them and see or order them.  My wife Yuxin (eeshee) does all the cutting of material for them and all of the serging and sewing for them, and makes some money from the lady who owns the business.  She had chemo before in Harbin, China after her initial diagnosis there at University Hospital #1 in Harbin which is in northern China not far from Siberia.  She then came here and we got married on December 1st. up north here in MI., so we just celebrated our 3 year anniversary on Dec. 1st., and I hope we will be able to celebrate many more together.  She is a vegan and a Buddhist while I am a Christian, and we both have been doing a lot of praying as well.  We initially met on a Chinese dating website.  I have been back to China with her twice and we are hoping to go again this spring if all goes well, as she is a new grandmother for a new little baby girl named NiuNiu by Yuxin, her grandmother which makes me a new grandfather, so I am looking forward to meeting and spending time with my new Chinese grand daughter.  Yuxin has only one son and daughter in law there in Harbin, her mother who just turned 80, a married sister, and three married brothers, as well as friends and classmates.  So she has a lot to live for and I and her Buddhist teacher and her family all tell her to be positive and confident that she will beat this and live a long and happy life.

Tethys41

Chicky1941 said:

My wife's recurrence of ovarian cancer...

Hello...I am new to this website as of tonite.  I joined because my Chinese wife is having a recurrence of her ovarian cancer.  Four years ago she was diagnosed, had 3 chemo Rx's pre-op., surgery, 3 chemo Rx's post-op., and some kind of immune system treatment.  She had been cancer free until her CA-125 going up and had a CT scan which showed two one inch peri-aortic  lymph nodes that were biopsied and showed to be cancerous.  Her oncologist told us she could do nothing as sometimes such small nodes stay in one place and the patient can live for many years, or they can get bigger and cause problems without another six rounds of chemo Rx...so it's a crap shoot.  He said if it was his wife, he would recommend the six rounds of two kinds of chemo along with Avastin which stops the blood supply to cancer cells thereby killing them.   I too am a huge advocate for integrative and alternative approaches to cancer, but we decided to do the chemo.  She is a vegan and other than the cancer is very healthy and very active.  So along with the chemo, I've been given her some alternative supplements which I researched and discovered to stop and/or control the cancer which I hope will permanently.  She is doing what you said in your post, but I want to do more to get her away from the acid side of the pH balance, so I'm going to try to get her on a ketogenic diet, altho she is probably very close to that now.  She's had only one treatment so far and has tolderated fairly well except for developing a sore mouth a couple days ago and now her hair has been falling out, so she wants to get it all cut off, since it's falling everywhere.  She had the BRCA test and it showed negative.  She has cut out all sugar, but she likes rice and pasta, but I'm going to try and wean her off of that.  I've heard that Lysine is helpful for the sore mouth as so far nothing that we've tried as far as mouth rinses and topical anesthetics has really helped.  Any other suggestions you would be willing to give me so I can help her would be very much appreciated since you have been in remission for a long time.  I hope you continue to stay in that remission and live a long and a happy life.  Thank you very much...RJ

Chicky,

I am sorry you and your wife are going through this.  Very difficult for both of you, I'm sure.

It would be very difficult for your wife to remain vegan and do a ketogenic diet.  In my experience with my naturopath and many ovarian cancer patients, it apears that a vegan diet is not the best approach to resolving cancer.  We just simply need some nutrients that are only available in animal products.  Would she consider at least eating eggs and dairy?  Unfortunately, most ketogenic rely heavily on dairy as it is a good source of fats, which is the bulk of a ketogenic diet.  Although vegan diets are thought to be the ultimate healthy diet, they just don't supply all of the nutrients we need. 

Definitely, the rice and pasta will only add carbohydrates and those are what a ketogenic diet avoids, as these just convert to sugar in her body.  The general idea is eating low carb, no sugar, a lot of vegetables, which she already does, and small amounts of animal protein, plus a lot of fats, like coconut milk, avacados, and oils, plus dairy.  Of course you want the food to be organic and hormone-free.  There is a book titled "Anti-cancer: A New Way of Life" which describes a number of things she can do to support herself through this.  Food is included in the book.  I know a few women who have active cancer in their lymph nodes and they seem to be able to manage it primariy through deit and lifstyle, although many do end up having some chemo eventually. 

I managed to avoid mouth sores altogether.  I sucked on ice chips while I received the Taxol infusions, the drug that seems to cause them.  That reduces the blood flow to the mouth and lowers the damage to cells there.  I wish you and your wife well. 

Chicky1941

Tethys41 said:

Chicky,

I am sorry you and your wife are going through this.  Very difficult for both of you, I'm sure.

It would be very difficult for your wife to remain vegan and do a ketogenic diet.  In my experience with my naturopath and many ovarian cancer patients, it apears that a vegan diet is not the best approach to resolving cancer.  We just simply need some nutrients that are only available in animal products.  Would she consider at least eating eggs and dairy?  Unfortunately, most ketogenic rely heavily on dairy as it is a good source of fats, which is the bulk of a ketogenic diet.  Although vegan diets are thought to be the ultimate healthy diet, they just don't supply all of the nutrients we need. 

Definitely, the rice and pasta will only add carbohydrates and those are what a ketogenic diet avoids, as these just convert to sugar in her body.  The general idea is eating low carb, no sugar, a lot of vegetables, which she already does, and small amounts of animal protein, plus a lot of fats, like coconut milk, avacados, and oils, plus dairy.  Of course you want the food to be organic and hormone-free.  There is a book titled "Anti-cancer: A New Way of Life" which describes a number of things she can do to support herself through this.  Food is included in the book.  I know a few women who have active cancer in their lymph nodes and they seem to be able to manage it primariy through deit and lifstyle, although many do end up having some chemo eventually. 

I managed to avoid mouth sores altogether.  I sucked on ice chips while I received the Taxol infusions, the drug that seems to cause them.  That reduces the blood flow to the mouth and lowers the damage to cells there.  I wish you and your wife well. 

Good afternoon Tethys 41.  Thank you for the info re. the Ketogenic Diet and it's application to my Chinese wife who is a Buddhist vegan.  I do not think her religion would allow her to change her diet...but I can inform her about the rice and pasta which turns to sugar, and it turns out one of her Chinese lady friends who was either a physician or worked in a hospital told her the same thing.  Aside from that she eats a lot of veggies and drinks hot tea or water.  She does not eat sugar and is very conscious of any food that contains sugar, and so many foods of course do.  I do have a few books on diet and cancer, but I don't think I have the one you suggested, so I think I will purchase it and maybe it will give me more ideas on what would be better for her to eat.  In addition, I did some research and discovered that Llysine, Biotin, and Zinc lozenges will help her sore mouth and gums.  I don't know why they don't tell you that to begin with as I find it hard to believe they don't know about it.  I also have her on some other natural organic cancer restraining supplements i.e. Vit. B-17 caps, High potency liquid Vit. C, Cucurmin caps, Essiac tea caps, Vit. B complex, High dose Vit. D, Dandelion Leaf Root Tea, and Frankincense Oil one drop on her tongue b.i.d., in addition to a good all around women's vitamin every day.  I haven't told the dispenser of the chemo about this, but I don't believe it will hurt her or affect the potency of the chemo, and in fact may well help her.  I do not believe that doctors and nurses know everything, and in fact doctors know little to nothing about any kind of nutrition or diet and are prohibited from using anything but the big three conventional cancer treatments...surgery, radiation and chemo.  Those who have tried have been warned by the AMA and the FDA about losing their medical license, and many of them have.  The reason for this of course is greed, as for years the medical schools have taught drug based medicine due to the influx of big money by people who have a vested interest in phamaceutical companies, hospitals and oncologists.  If you look into the very interesting history of medicine and medical schools, you will see that the natural and/or holistic schools were forced out of business because nothing that they used could be patented, thereby no money could be made from them, and the big medical schools financed by people like the Rockefellers and the Carneagies thrived because they had at least one of their members on the boards of the medical schools who pushed them to teach drug based medicine, which is how it is today.  It is documented and well known that conventional cancer treatment methods have not improved the lives of cancer patients or truly killed the cancers since the 1950's, and most of today's doctors know that, but they are not allowed to even consider other alternative, safe and inexpensive methods of treating all types of cancers which often recur due to simple greed.  That is why I know that traditional conventional methods of cancer treatments like chemo, which 90% of oncologists would not prescribe for themselves or their families, does not work in the long run no matter what doctors tell us.  Yet they want to put cancer patients into experimental new drug programs which they in fact know may very well kill the patient, but they do not care about that as it is just research, and if they kill a few guiena pig cancer patients, it doen't matter.  Chemo drugs were first discovered when Mustard Gas was used in the first world war, and it hasn't gotten much better since then.  I personally would not have chemo if I should get cancer, but it was my wife's decision to get it so I went along with her wishes.  I know there are things you can do and nutritional supplements you can take go keep from getting cancer by keeping your immune system strong, and anyone can do the same.  You have to become your own health care advocate and learn as much as you can because the bottom line is that no doctor who sees so many patients in a day, can help you even if he would want to, as that would mean he'd have to see fewer patients and take more time with each one, and if you can find a doctor who is willing to do that please let me know as I'd like to make an appointment with him. 

Tethys41

Chicky1941 said:

Good afternoon Tethys 41.  Thank you for the info re. the Ketogenic Diet and it's application to my Chinese wife who is a Buddhist vegan.  I do not think her religion would allow her to change her diet...but I can inform her about the rice and pasta which turns to sugar, and it turns out one of her Chinese lady friends who was either a physician or worked in a hospital told her the same thing.  Aside from that she eats a lot of veggies and drinks hot tea or water.  She does not eat sugar and is very conscious of any food that contains sugar, and so many foods of course do.  I do have a few books on diet and cancer, but I don't think I have the one you suggested, so I think I will purchase it and maybe it will give me more ideas on what would be better for her to eat.  In addition, I did some research and discovered that Llysine, Biotin, and Zinc lozenges will help her sore mouth and gums.  I don't know why they don't tell you that to begin with as I find it hard to believe they don't know about it.  I also have her on some other natural organic cancer restraining supplements i.e. Vit. B-17 caps, High potency liquid Vit. C, Cucurmin caps, Essiac tea caps, Vit. B complex, High dose Vit. D, Dandelion Leaf Root Tea, and Frankincense Oil one drop on her tongue b.i.d., in addition to a good all around women's vitamin every day.  I haven't told the dispenser of the chemo about this, but I don't believe it will hurt her or affect the potency of the chemo, and in fact may well help her.  I do not believe that doctors and nurses know everything, and in fact doctors know little to nothing about any kind of nutrition or diet and are prohibited from using anything but the big three conventional cancer treatments...surgery, radiation and chemo.  Those who have tried have been warned by the AMA and the FDA about losing their medical license, and many of them have.  The reason for this of course is greed, as for years the medical schools have taught drug based medicine due to the influx of big money by people who have a vested interest in phamaceutical companies, hospitals and oncologists.  If you look into the very interesting history of medicine and medical schools, you will see that the natural and/or holistic schools were forced out of business because nothing that they used could be patented, thereby no money could be made from them, and the big medical schools financed by people like the Rockefellers and the Carneagies thrived because they had at least one of their members on the boards of the medical schools who pushed them to teach drug based medicine, which is how it is today.  It is documented and well known that conventional cancer treatment methods have not improved the lives of cancer patients or truly killed the cancers since the 1950's, and most of today's doctors know that, but they are not allowed to even consider other alternative, safe and inexpensive methods of treating all types of cancers which often recur due to simple greed.  That is why I know that traditional conventional methods of cancer treatments like chemo, which 90% of oncologists would not prescribe for themselves or their families, does not work in the long run no matter what doctors tell us.  Yet they want to put cancer patients into experimental new drug programs which they in fact know may very well kill the patient, but they do not care about that as it is just research, and if they kill a few guiena pig cancer patients, it doen't matter.  Chemo drugs were first discovered when Mustard Gas was used in the first world war, and it hasn't gotten much better since then.  I personally would not have chemo if I should get cancer, but it was my wife's decision to get it so I went along with her wishes.  I know there are things you can do and nutritional supplements you can take go keep from getting cancer by keeping your immune system strong, and anyone can do the same.  You have to become your own health care advocate and learn as much as you can because the bottom line is that no doctor who sees so many patients in a day, can help you even if he would want to, as that would mean he'd have to see fewer patients and take more time with each one, and if you can find a doctor who is willing to do that please let me know as I'd like to make an appointment with him. 

Curcumin

Chicky,

I agree with all of your observations.  I didn't realize it was the same in China.  It is very frustrating and you really have to become your own advocate.  It sounds as if you are using a number of very good vitamins and minerals to support her.  I love that you can get B-17.  As far as I know, it is still not legal in the U.S.  I had to go to Mexico to have it when I was sick.  

I have seen mixed reviews on Curcumin during chemo, but it seems that it is advisable to discontinue taking it for 48 hours before and after chemo and limit it to no more than 2 grams per day.  She can take more than that when not in treatment.  

Good luck to you both.