Hello ladies😊
I am new on this board, was diagnosed with stage 2 low grade serous OC on July 24. I had surgery to remove a complex cyst that turned out to be cancerous. Had full hysterectomy Decided not to have chemo and now on LEtrozole.
Any ladies out there that have been on letrozole without chemo? Any special diets or special herbs that are recommended for this type of cancer?
Thank you and have a lovely day and sending positive thoughts, love and courage to all🌷🌷
Welcome to our lovely gang. I can’t comment on the letrozole as I had the surgery then was put on the Carbo/taxol regime, but I wanted to wish you well and hope your treatment works well for you. Keep well love ❤️Xx Jane
My mum was diagnosed with stage 3c 7 years ago. Had a year of chemo then started on Letrozole as they discovered she was ER positive. Letrozole kept mum's disease stable until last August. No special diet. Just leading a 'normal' life. Good luck and all the best xx
Than you Charlotte! Very encouraging and the best to your mom.😊
Hi there
I am also on letrozole. I did chemo for three rounds then just decided what's the point as it's low grade. Disease is stable so dinsny want to put my body through it.
I do find I am getting quite achey after sitting down for a while. Not sure if it's the letrozole.
I am not on a special diet. Indeed rating rather too much crap however I do try to get my greens in, eat lots of anti intoxicant berries and take tumeric. Not sure if it all works or not but makes me feel better. I did see a natropath who prescribed over $500 of suppleness which I bought. In hindsight think they probably saw me coming!
Wishing you healing thoughts on your journey!
Maxine
Hi Babbey,
Thank you for your response and wishing well in this journey of ours. I also did not want chemo since the statistics are so low on it working for low grade serous.
The Letrozole can make you ackey and stiff, plus hot flashes. I walk about 2.5 miles a day and take the Letrozole in the morning. Looking into a nutritionist and some stress reducing alternative methods such as reflexology, acupuncture, energy healing etc. don't know how we got this and hope they are successful in trials to find a good remission drug so that we can live a lon life.
I am 57 and had just retired, now this unfortunately has become my full time job along with taking care of my elderly parents.
Have a good day and lots of positive thoughts! Sending hugs!💜💜
Susana
I was diagnosed with stage 2A low grade endometroid OC July 22 last year and also decided chemo was not for me. Part of that decision was due to the fact that no relatives who have taken chemotherapy lived past 18 months and I was told by a top hospital in the US it would only add 10% to my overall survival if they found the right drugs, my body could tolerate the treatments/side effects, etc.
So I radically changed my diet (vegetarian, no sugar/low carb but do eat fish) and take supplements (ginger root, turmeric, vitamin D3, modified citrus pectin, vitamin C & B complex, mushroom mix, quercetin, pancreatic enzymes, CoQ10, etc.). My CA125 was 256 before surgery and last month was 12. I try to exercise (walking/swimming) several times a week to help lower blood sugar and take bitter melon every other day or so to lower glucose. I have also been on Budwig diet and made Essiac tea during the first year after diagnosis which I think has helped. I also go to a sauna once a week to sweat out the toxins and de-stress.
I’m sorry I don’t have any experience with Letrozole as my surgeon basically abandoned my care once I refused chemo/radiation so my protocol is based on my research and reading I have done. I recommend the books “The Metabolic Approach to Cancer” by Dr. Nasha Winters ND and “The Truth about Cancer” by Ty Collinger for alternative treatments. Dr. Winters had OC 20+ years ago and is still here and fighting it. She did not do chemo or radiation for her treatment.
I wish you success in finding your own cure and don’t forget to find joy in every day.
Thank you so much for your response and information given. I also think the same way! I went on Letrozole since it is much less toxic than chemo and hopefully will delay if it comes back.
Wishing you the very best and lots of good energy and hugs from me💗
Thank you - I am also allergic to many common life saving medications and when I asked about testing to see if I would be allergic to the chemo they purposed, I was told they don't do that but would put me in ICU for infusions if necessary (cause we know ICU is free - not!). Be sure to detox your system when you are done with treatments as I have heard not doing so causes lingering side effects and other health issues. Not many on here who refused chemo/radiation but I refuse the "try this try that" method of treatment until you are too toxic and nothing works. Take care and hope you find your cure.
Thank you and you do the same. I have followed you😊😊
How is letrozole treatment going? I have just been diagnosed with 2c low grade serous OC. The oncologist wants to do the chemo approach but after researching it doesn't seem like the best move in my opinion. I am meeting with my Dr. in a week and a half and will inform her then about my decision.
Hi Leannie,
I was diagnosed in July 2017 also with stage 2 low grade serous. As you know this is such a shock and it takes time to absorb all and believe its real. After surgery went to Memorial Sloan Kettering for a second opinion with the slides to verify same diagnosis. The dr wanted me to do the baseline chemo! But after so much research including all research papers from Dr. Gersheson who is the guru of this type of cancer here in the states in Texas, I decided to go on Letrozole and opt out of chemo since currently the statistics are very low with chemo for Low grade serous. It is my understanding that it’s not that great with Letrozole either but I decided to take the best of the two evils. ( less side effects)
When I was diagnosed in July my Ca125 was 16. After surgery and 1 month on Letrozole, the Ca125 was 5, I am going to have a first scan and another Ca125 beginning January.
It was my own personal decision based on the statistics they gave me for this type of cancer.
I can always try chemo later, or other medications from currently on going clinical trials.
I am having the tumor and my own DNA tested for possible better future treatments.
Where are you in the states? I am in NY.
Sending you positive thoughts and love ! Hang in there and I am here if you need to talk.......🦋🦋
Thanks so much for your reply! You have given me so much more information. I appreciate it!!!! Yes what I've read so far about the chemo isn't so promising. I have my appt with the oncologist next week, but won't start the chemo until Jan. IF I go that route. CA125 results have been all over: July 144; About 1 month later in August was 183; then was 160 the morning of/before the debulking surgery. Did you have any of your tissue sent to Foundation One? I am in FL. Went back to work today. Felt good to be busy!
Leannie
Thanks for the good advice, skdavidson1!! I am reading the book The Truth About Cancer and also have a very good doctor friend that is leading me in the direction that is right for me! My niece has a personal friend that had been diagnosed with pancreatic cancer and is in total remission using the holistic approach! Also an article written by a Dr. at Sloan-Kettering also helped me come to the conclusion I won't do chemo!
Gratefully,
Leannie
Each of us has to decide what is best for us and the quality of life we want and once you understand the low success rate vs the systemic damage chemo can cause, you have a clear picture of what is right for you. I am not going to spend a lifetime of earnings on a 10% chance of chemo working for me. To many people are scared to go against what the white coats recommend but they are legally prevented from giving any other treatments than surgery, chemo, radiation or will lose their license to practice medicine. I am reading another book "The Healing Platform" by Annie Brandt who also had cancer and survived it without chemo. There are other roads to chose and God told me this is the road I need to take. I have already survived longer than all my relative who took chemo/radiation. Wishing you the best as you find your cure and sending a big hug for having the courage to do it your way.
Hi Leannie! I'm from the Netherlands and was also diagnosed with lgsoc stage 2/3 (what my Dr. calls it because they only found a minimal amount of cells in the omentum wich officialy makes makes it stage 3). I was completely debulked and my uterus was treated with plasma jet and left intact because I'm only 24 years old. Ovaries and omentum were taken out. I'm on chemo now because my oncologist thinks that there's a 30% chance of killing the cells that might have remained. It's for sure contradicts everything I've read as well. But no side effects so far and just going for it. But I'm researching a lot and I'm very curious about the article you've read from the Dr. from Sloan Kettering. Could you point out where I can find it? I'm also more interested in the hormonal maintenance approach that Dr. Gerschenson from MD Anderson describes in 2017 as being successful instead of just surveillance. You are aware of this? Hope you made the right decision and let's keep in touch to share ideas as our staging and timeline look very much the same. Good luck and all the best!
Esther
Good Morning Droomfles,
Here is the article. Under the conclusion subheading clinched it for me! cancernetwork.com/oncology-.... My numbers have hovered around 11 and 12. I have also gone on bioidentical hormones (progesterone and testosterone only).
I've had scans and all is good so far. Not sure what the future will bring but being single and independent it will be on my terms!!
I drink kombucha with CBD oil daily and feel that has helped me in other areas (RA) and overall...
I have only been back to my oncologist once as I needed a note to return to work and to get a scan. I will probably go to someone else for the scans...someone in my insurance network. Each year, insurance seems to cover less!!
Maybe my doctor friend was aware of Dr. G's work . She seemed to think my ovarian cysts then cancer was caused from the birth control pills I was on for more than 35 years. I just trust her as she is hyper aware of her own body as her Grandmother passed away more than 20 years ago from OC and mother was diagnosed with breast cancer about 19 years ago...
Hope this was helpful.
STAY strong!
Ok thank you! Every bit of info helps. I like to be informed about things that helped others and I'm willing to experiment with cbd oil if necessary. I'm actually feeling great and have almost no side effects from chemo so far:).
Hope you won't need it but if you do I hope your insurance won't be a problem! Thanks again and all tje best!
Esther
Dear Sana,
Were you a stage 2A? Anything higher and chemo is very much advised or did the doctors support you in your choice?
All the best
Esther
Hi there, my stage was 2C did have pelvic washings. I could not see myself go through chemo due to its low working statistics. Dr at Sloan back in September 2017 thought I should have it but I said no. Been on Letrozole maintenance ever since. Just had a scan and it was clear thank God. Wishing you the best. There’s a low grade serous group on Facebook if you would like to join.
Best wishes on your journey 🤗🤗
Hi Sana!
Thank you for your quick response and I'm very happy you are doing good! Keep it up!!
I am also low grade 2C plus minimal cells in my omentum wich oficially makes it 3 but my Dr doesn't want to call it that because he says the omentum is like a magnet for cells and expected some in there. Still a bummer..didn't get info about my washings, will ask. I guess you had a complete debulking that brought you straight into remission? I had. CA125 is 13 and NED.
I know the statistics of chemo on low grade but my Onc thinks it still has a 30%chance of killing it all in my case. I didn't ask why and just took it but doubted chemo a lot. I will request hormonal maintenance after chemo. How did your Dr. respond when you didn't go for it?
I guess your tumor was hormone responsive? I also had a next gen test and they found a Somatic Chek2 mutation and testing the blood now if I inherited this. You have that test?
Sorry, many questions but I just started chemo 4 weeks ago and still in the thinking process.
All the best!
Esther
Hello. Low grade Serous 
Diagnosed - Low Grade Ovarian Cancer 
SURVIVERS AFTER STAGE/GRADE 3C OVARIAN CANCER
