my mother has ovarian cancer

ovarian_support · March 2014

Hi,

I'm not really very good at communicating and if I say anything over the line, please just let me know. I've been a follower of csn since my mother was diagnosed and have only recently signed on. She was diagnosed and had a hysterectomy and debulking surgery in January of 2013. She was given carboplatium and taxol for her first chemo and we and her doctor were very optimistic as she was in good health and tolerated the drugs so well. Her CA 125 level dropped steadily throughout the treatment and by the end were under 30 and her follow up CAT scan showed no sign of disease. We were completely relieved and thought it was beat. We did not know then that only 20% of women stay in remission. Around 5 months later she started feeling bloated again; she said she felt the same way she did when she was diagnosed. When she went in the CAT showed "nodularity" and other signs of disease. The put her on Gemzar and Taxotere. Between the CAT scan her and start of treatment her CA 125 jumped from 300 to 900. Initially there were good results as far as the CA 125 levels went with another steady drop but not as dramatic as the first time. Between the 4th and 5th treatment the doctor noted a small tumor not seen before when doing a palpation. He said that we would watch that but were not going to do anything about it. We didn't get the chance to ask about it at the 5th and the final treatment because he was out of town for both appointments. After that my mother's CA 125 level out at around 250 and did not fall too much lower. It was around this time my mother agreed to a second opinion. I had been reading a lot about heat therapy, RFA and HIPEC and have for a number of years been inducing an artificial fever in myself to cure colds and flu's and so after some research and a recommendation from a friend who knew a cancer survivor, my mother scheduled her second opinion with another local gynecological oncologist who did know about heat therapy. She read my mother's latest CAT scan and noted that the cancer while not too bad in the abdominal cavity had spread to the outside of her stomach, lungs and liver. She recommended a clinical trial using Doxel and a new immuno stimulant drug. My mother's primary oncologist agreed that Doxel was a good choice whether or not she was given the immuno stimulant. Both doctors agree that the possibility of any sustained remission is between 10 and 20%. I suppose I am just looking at options now, I get ideas thrown at me all the time from well-meaning friends and family. I was wondering if anyone had any ideas of things we can do at home or dietary supplements that help with the side effects of the chemo. My own doctor recommended something called Pterostilbene and I have found information on it but it's all pretty new. Neither of my mother’s doctors had heard anything about it but still said it was ok to take. I was wondering if anyone had taken that or knew someone who did. Or really any other suggestions. It's hard to know on the internet what’s real and what is something someone has just cooked up to sell their product. I like to think that I've done in-depth research, but I'm not sure. My mother has started taking it and my doctor had me start it as well as a preventative measure. Since my mother started her second round of chemo (gemzar/taxotere) I have been doing a lot of internet searches involving the key words 'new ovarian cancer treatment 2014' Some things are pretty straightforward but I can't find information on when clinical trials for these new drugs are starting. If anyone has any ideas of where I can look for that information I would really appreciate it. I'm encouraging my mother to get on the csn board so that she can communicate with people who understand what she is going through; but so far she just likes to have me summarize what I've read. I'm not really sure what to say to encourage her to sign on. I know she's worried about starting the Doxil and what the side effects can be and I know she's worried about the future because I am too. Really any ideas or information about what third line treatment with Doxil is like would be appreciated. I think this site is a great comfort to a lot of people and I would like to thank Alexandra and Seatown for helping me sign on.

Alexandra · March 2014

sorry about your mom's condition

Welcome to CSN Melissa.

After the first line of Carboplatin / Taxol chemo your mom recurred within 5-6 months, which means that her cancer was platinum-resistant and thus repeating platinum-based chemo (Carboplatin, Cisplatin) would not be beneficial. I am assuming that her cancer is high-grade. Taxotere and Gemzar worked for a while but now stopped working, and cancer has spread to remote organs. It is time for another type of chemo (if she wants more chemo). Doxil, Avastin and Topotecan would probably be her choices outside of clinical trials. If you want to look at clinical trials, go to clinicaltrials.gov, search and pay attention to eligibility requirements. PARP inhibitors are the latest craze for high-grade, even more so for BRCA+ patients. Unfortunately none of those drugs are close to being FDA-approved.

I have no knowledge of RFA for recurrent ovarian cancer. HIPEC (heated intra-peritoneal chemo wash) is rearly done with ovca debulking surgery due to high mortality / morbidity and never done if cancer has spread outside of peritoneal cavity. IP chemo is usually not an option for recurrence either, especially since she is now stage 4.

Pterostilbene showed some anti-cancer effect in rats but there is no conclusive proof of its effect on humans, leave alone prevention of ovarian cancer. Not sure why your doctor would put you on it. I understand your best intentions to help your mom, but I can assure you that obsessive googling does not cure cancer, only creates anxiety and confusion. Some people believe in alternative or integrative treatments and you will read many different and polar opinions. If you decide to go this route, please consult with a reputable naturopath, don't just buy random "miracle cures" off the internet. The better it sounds, the more likely it's a scam.

If you haven't yet, contact genetic counselor and get your mom tested for BRCA gene, it's a simple blood test. If she is positive, you (and your siblings) need to get tested too. I doubt that her cancer is hereditary because of platinum resistance, but better safe than sorry.

Your mom is very lucky to have you as a caregiver and supporter.

Good luck and big hugs,

Alexandra

seatown · March 2014

Don't overthink it

Melissa, I'm glad you were able to sign up. Your dedication to helping your mom is admirable--but you have to remember to take care of yourself, too, so you can be there completely for your mom & not get too stressed out over decision-making.

I have found reassurance in hearing from others that my doctors are the best available & the treatment they recommend is state-of-the-art. Nevertheless, I find myself sometimes confronted by conflicting opinions by various docs. I think you have to accept that that's just the way life is.

If you haven't already found it, I would suggest the web site of the National Comprehensive Cancer Network, comprised of the leading cancer teatment hospitals in the US. It has many resources, among them patient guidelines for many types of cancer treatment including ovarian. It takes digging & concentration, but if you have patience you can find what the nation's experts say are the optimal current treatment alternatives. The web site seems to be updated frequently. http://www.nccn.org/patients/guidelines/ovarian/index.html#1

Finally, an anecdote: a dear friend had a cancer (not ovarian) recurrence last year. She first saw her longtime doc, then decided she wanted the best available opinion. So she went to M.D. Anderson in Houston for an opinion there. That recommendation differed from the one in her home town, so she went to the Mayo Clinic to see what they would say. She got yet another opinion. My point is, you can make yourself crazy (& poor) chasing down possible options. I think you have to do your best to educate yourself, but in the end go with what your heart & your gut say.

Good luck. Hoping for only the best for your mom & you.

Carole

ovarian_support · March 2014

thank you

Thank you for your support and the information is great, I am looking into it. My mom is Brca negative and she does qualify for and is starting next week a clinical trial using Doxil in combination with a new TLR8 agonist. As far as the supplement goes I’m not sure where my doctor got his initial information but he and his wife take it and some of his patients with terminal cancer are on it and are still alive, so that’s why he recommended it. This doesn’t mean that it works, it could be any number of other factors and he is not an oncologist but his opinion is that since it has been tested and shows no signs of side effects or drug interactions (yet) that it couldn’t hurt so why not. I am always leery of non FDA approved drug cures on the internet claiming 200% improvement and using the words “what big pharma doesn’t want you to know” so I’m not likely to take them or recommend my mother to take them. I like to have doctor recommendations before trying anything, especially since I’m the weird girl that calls the 24 hr. pharmacy at 1 a.m. wanting to know about possible drug interactions between my new antibiotics and my multivitamin. Thank you very much for your kind thoughts and advice, I really appreciate it.

Lisa13Q · April 2014

ovarian_support said:
thank you
Thank you for your support and the information is great, I am looking into it. My mom is Brca negative and she does qualify for and is starting next week a clinical trial using Doxil in combination with a new TLR8 agonist. As far as the supplement goes I’m not sure where my doctor got his initial information but he and his wife take it and some of his patients with terminal cancer are on it and are still alive, so that’s why he recommended it. This doesn’t mean that it works, it could be any number of other factors and he is not an oncologist but his opinion is that since it has been tested and shows no signs of side effects or drug interactions (yet) that it couldn’t hurt so why not. I am always leery of non FDA approved drug cures on the internet claiming 200% improvement and using the words “what big pharma doesn’t want you to know” so I’m not likely to take them or recommend my mother to take them. I like to have doctor recommendations before trying anything, especially since I’m the weird girl that calls the 24 hr. pharmacy at 1 a.m. wanting to know about possible drug interactions between my new antibiotics and my multivitamin. Thank you very much for your kind thoughts and advice, I really appreciate it.

Hi....is that a border terrier??? My Mom had OVCA too

Hello,

My name is Lisa and my Mom had OVCA as well. I don't know how long you've known or where she has been treated, but I sure understand the process. First, I hope you are seeing an oncologist who specializes in Ovarian cancer. Secondly, I have done some research on supplements. Some are quite helpful and some not so....but I would check with your oncologist about the supplements the doctor recommends. They are pretty particular about what they want people to take and not. I think it's great your Mom is in a clinical trial and she is lucky to have you. When my mother was on Doxil, she did get mouth sores, so be sure to ask for a prescription for "magic Mouthwash".....keep us posted....

ovarian_support · April 2014

Lisa13Q said:
Hi....is that a border terrier??? My Mom had OVCA too
Hello,

My name is Lisa and my Mom had OVCA as well. I don't know how long you've known or where she has been treated, but I sure understand the process. First, I hope you are seeing an oncologist who specializes in Ovarian cancer. Secondly, I have done some research on supplements. Some are quite helpful and some not so....but I would check with your oncologist about the supplements the doctor recommends. They are pretty particular about what they want people to take and not. I think it's great your Mom is in a clinical trial and she is lucky to have you. When my mother was on Doxil, she did get mouth sores, so be sure to ask for a prescription for "magic Mouthwash".....keep us posted....

Thanks

Thank you for posting, it is nice to hear from another family member; even though I read posts from family members I still sometimes feel like I am intruding on those who are actively battling this disease. I was very sorry to hear that your mom passed and I know you loved her as much as I love mine, so your response means a lot to me. Both her current doctor and her first doctor are gynecological oncologists and we told them about the supplement my doctor recommended. Her first doctor was against it even though he admited he had never heard of it. Her second doctor said it was okay to take...even though she had never heard of it. We decided to role the dice and take it, so far there have been no side effects or interference with her chemo drugs. We do have Magic Mouthwash, but she hasn't had side effects from the Doxil yet. I read that it sometimes doesn't happen until the second or third treatment. We are still up in the air about the clinical trial, it's late so I won't go into it now; but I plan to post a more in depth note of it and what is going on in that department. Thank you for your advice.

P.S. She isn't a Border Terrier, though there might be some in there. What she is a lesson on why you are not supposed to believe what the people are selling on Craigs List..Still a great dog but not the Irish Wolfhound we were hoping for

NoTimeForCancer · April 2014

ovarian_support said:
Thanks
Thank you for posting, it is nice to hear from another family member; even though I read posts from family members I still sometimes feel like I am intruding on those who are actively battling this disease. I was very sorry to hear that your mom passed and I know you loved her as much as I love mine, so your response means a lot to me. Both her current doctor and her first doctor are gynecological oncologists and we told them about the supplement my doctor recommended. Her first doctor was against it even though he admited he had never heard of it. Her second doctor said it was okay to take...even though she had never heard of it. We decided to role the dice and take it, so far there have been no side effects or interference with her chemo drugs. We do have Magic Mouthwash, but she hasn't had side effects from the Doxil yet. I read that it sometimes doesn't happen until the second or third treatment. We are still up in the air about the clinical trial, it's late so I won't go into it now; but I plan to post a more in depth note of it and what is going on in that department. Thank you for your advice.

P.S. She isn't a Border Terrier, though there might be some in there. What she is a lesson on why you are not supposed to believe what the people are selling on Craigs List..Still a great dog but not the Irish Wolfhound we were hoping for

Dear, I had to reply to

Dear, I had to reply to something you said. Please don't think anyone here would think you are intruding on anyone here. There are lots of daughters, husbands, sons, etc...who come on the site to read and ask questions about the ones they love. I think it is beautiful and how lucky your mom is to have a daughter who cares so much. She may not want to become a member, but maybe she will have you ask questions, and the amazing women in the Ovarian group will answer.

my mother has ovarian cancer

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