A question for ladies in remission

kikz

Tethys41 said:

No need...
to apologize. One would hope that an organization such as the American Cancer Society would be a reliable source of information. Some of their information is, no doubt, helpful, and it is wonderful that the emotional support you received from them was good for you.

Thanks again for all your support
and understanding. It is a lonely road we travel. I have had to be stronger than I ever have and often have to hold feelings and fears inside because those around me cannot deal with them. That's why I feel so grateful for this board.

I watched Dr. Oz the other day and was impressed by Dr. Li. The foods he suggested as helpful in ov/ca prevention are foods that I can easily consume. Well, I don't know about sea bass. Is that easily attainable? I pulled up a list of fish high in omega-3 and many were higher than sea bass. Albacore tuna for example which I have no problem eating several times a week. Red onions and tomato I eat all the time and I know I can eat 1/2 cup of endive twice a week (although I don't think I've ever had it). The percentages of success in these foods ability to prevent or kill ov/ca cells was amazing. My question is will that work for those of us who already had ov/ca?

So much information and so many questions. Geez, I just want to do whatever I can to stick around for as long as I can.

Gratefully yours
Karen

Tethys41

kikz said:

Thanks again for all your support
and understanding. It is a lonely road we travel. I have had to be stronger than I ever have and often have to hold feelings and fears inside because those around me cannot deal with them. That's why I feel so grateful for this board.

I watched Dr. Oz the other day and was impressed by Dr. Li. The foods he suggested as helpful in ov/ca prevention are foods that I can easily consume. Well, I don't know about sea bass. Is that easily attainable? I pulled up a list of fish high in omega-3 and many were higher than sea bass. Albacore tuna for example which I have no problem eating several times a week. Red onions and tomato I eat all the time and I know I can eat 1/2 cup of endive twice a week (although I don't think I've ever had it). The percentages of success in these foods ability to prevent or kill ov/ca cells was amazing. My question is will that work for those of us who already had ov/ca?

So much information and so many questions. Geez, I just want to do whatever I can to stick around for as long as I can.

Gratefully yours
Karen

Food Choices
My opinion is that if you can eat the foods that help fight cancer, while you are in treatment, it serves only to help your body during treatment. If, however, you cannot stomach the helpful foods, eat whatever you can. Malnutrition is a common and dangerous side effect of cancer treatment. As for those of us in remission, yes, studies show these foods help reduce the risk of recurrence.
Although Albacore tuna is an easy high omega-3 fish to acquire, it contains higher levels of mercury, due to being at the top of the food chain. There are other choices of fish that are safer and still offer high levels of omega-3.

sarahb74

Tethys41 said:

Cancer Society Booklets
There has been a discussion about the after treatment booklet put out by the cancer society on another board. The information is outdated and downright misleading. I know that not everyone here agrees that diet is important in managing this disease, but there are many resources out there that indicate otherwise. One gyn/onc I talked with supported this view. Yet, the pamphlet the cancer society distributes recommeds the exact types of foods that will stimulate tumor growth, to gain weight lost during chemo. They also recommend avoiding cancer fighting foods, such as broccoli and cauliflower, to avoid the discomfort of gas. A woman on another board said she confronted the cancer society about the exceptionally bad information contained in their pamphlet. They replied that they only update them every 10 years. So, the bad information will continue to be distributed until the end of that 10 year window.
I know a woman who acheived remission after first line chemo for OVCA. She folowed the advice in this pamphlet and ate a lot of sugar and flour laden foods to gain weight back that she had lost. 9 months later, her CA-125 shot up and she was back in treatment. After her second line of chemo, and another remission, she made some moderate changes to her diet, cut down on sugar and flour, ate more organic, and started taking only one supplement that controls inflammation (curcumin). She has maintained a longer remission this time around, and although her CA-125 has crept up to one point above normal, it is holding steady. Imagine what her results might be if she incorporated a more comprehensive plan.

I largely followed the anti cancer diet
by Servan-Schreiber during my first remission. Apart from the odd piece of cheesecake or ice cream, which I absolutely refuse to give up,I followed the diet religiously. Ate turmeric/black pepper, garlic, cabbages, tomatoes, ginger, green tea whatever every day. I also took supplements, although not many. Most were way too expensive. My remission still only lasted 12 months.

carolenk

sarahb74 said:

I largely followed the anti cancer diet
by Servan-Schreiber during my first remission. Apart from the odd piece of cheesecake or ice cream, which I absolutely refuse to give up,I followed the diet religiously. Ate turmeric/black pepper, garlic, cabbages, tomatoes, ginger, green tea whatever every day. I also took supplements, although not many. Most were way too expensive. My remission still only lasted 12 months.

Healthy eating
In my opinion, healthy eating probably DOES help slow cancer progression and provide some degree of resiliance against the onslaught of side effects of chemotherapy. And yet, if healthy eating alone could cure cancer, a lot of us would be cured by now. Myself included.

I believe that something has to happen with the immune system to prolong/maintain remission. A vigorous immune defense seems to be an event that happens naturally for some lucky people who acheive a prolonged remission or cure. When I hear stories of disease recurrence 12 years after the original diagnosis, I feel that it must have been a lapse in immune function that allowed the recurrence. This opinion is based on the knowledge that there is a significant amount of current cancer research interest in fostering the immune response via cancer vaccines, boosting T-cell function, etc. Unfortunately, the results of the research are not forthcoming soon enough for us.

Surgery, chemo & radiation are tools to buy us TIME in the hope that the "magical event" of remission will happen. Unfortunately, some of the tools do further damage to the immune system while they confer their benefits. Chemo does not kill cancer stem cells--only kills off the daughter cells produced by the cancer stem cells. When the initial daughter cells are killed off, the cancer stem cells can be suppressed by the immune system. But in many cases, the cancer stem cells produce a NEW set of daughter cells resistant to the first-line chemo--and so it goes. Not everyone's cancer originates from cancer stem cells--but we have no way of knowing how/why the cancer happened so we go thru the standard medical treatment and hope for the best.

So, in your case Sarah, your remission possibly may have been EXTENDED to 12 months thanks to your attention to diet in addition to your immune defense whereas some women NEVER get to be in remission at all despite their best efforts living an anti-cancer lifestyle.

EnglishGal

carolenk said:

Healthy eating
In my opinion, healthy eating probably DOES help slow cancer progression and provide some degree of resiliance against the onslaught of side effects of chemotherapy. And yet, if healthy eating alone could cure cancer, a lot of us would be cured by now. Myself included.

I believe that something has to happen with the immune system to prolong/maintain remission. A vigorous immune defense seems to be an event that happens naturally for some lucky people who acheive a prolonged remission or cure. When I hear stories of disease recurrence 12 years after the original diagnosis, I feel that it must have been a lapse in immune function that allowed the recurrence. This opinion is based on the knowledge that there is a significant amount of current cancer research interest in fostering the immune response via cancer vaccines, boosting T-cell function, etc. Unfortunately, the results of the research are not forthcoming soon enough for us.

Surgery, chemo & radiation are tools to buy us TIME in the hope that the "magical event" of remission will happen. Unfortunately, some of the tools do further damage to the immune system while they confer their benefits. Chemo does not kill cancer stem cells--only kills off the daughter cells produced by the cancer stem cells. When the initial daughter cells are killed off, the cancer stem cells can be suppressed by the immune system. But in many cases, the cancer stem cells produce a NEW set of daughter cells resistant to the first-line chemo--and so it goes. Not everyone's cancer originates from cancer stem cells--but we have no way of knowing how/why the cancer happened so we go thru the standard medical treatment and hope for the best.

So, in your case Sarah, your remission possibly may have been EXTENDED to 12 months thanks to your attention to diet in addition to your immune defense whereas some women NEVER get to be in remission at all despite their best efforts living an anti-cancer lifestyle.

A very interesting and illuminating subject
Hi ladies: I am back now after purchasing a new computer. It works like a charm and I have one of those big monitor screens (25 inch). My old computer was hacked.

I have printed off this whole thread to read at my leisure. I really tuned into the posts about healthy eating.

In my own case, my see my gyn-onc every 4 months and he gives me a thorough physical along with a CA-125 test, however, he hasn't sent me for a CT scan. When I see him in December, I will ask him for one even though I freak out like crazy waiting for test results.

I also see a naturopathic doctor and I feel he has done wonders for me, he told me on my last visit that "my immune system is shining"." (Don't know how he can tell that)!

msfanciful

I still continue to see my
I still continue to see my oncologist ever since my 2007 diagnosis as well as through each of my separate remission periods.

I've had 3 periods of remission; even during remission she insists on seeing me roughly every 2-3 months with a ca-125 test prior to each visit with her. Depending on the ca-125 results, she will either reschedule me for another 3 months (if everything is normal) or she will order scans if my numbers seems to "jump" a bit too much for her comfort. Keep in mind she tells me that my numbers will probably always attempt to rise as I'm stage iv, but her concern is how "rapidily" the numbers are rising. This usually prompts the scans.

Even on a good visit with her she'll say something to the effect..."Okay sweetie, everything looks good, but we're going to have a very long relationship together." Well that right there tells me, that she intends to always be in the picture when it comes to my ovarian cancer follow-ups.

I've always assumed she will be a part of my arsenal when it comes to my health, I think I would absolutely panic if the day came when she wouldn't be. :-(

I have so many moments when something seems abnormal and I get great solace in knowing that when I see her in a few weeks, I can ask her about it being a valid concern or am I just being paranoid, whichever it is; I'm just glad she's there for me to ask.

Sharon

South Jersey

Karen,
I have always felt
Karen,
I have always felt that I could contact my oncologist at anytime and never feel like I was bothering her. When I finished my treatment, I continued to see her every three months for the next year and a half. I am now seeing her every four months... In addition, when she returns phone calls, if I am not available, she leaves her cell phone number for me to call her back... I am so sorry you are experiencing this.
Take care,
Beth

MK_4Dani

My follow up treatment:
Port flush: every 6-8 weeks and they check my CA-125
ONC: (actually the nurse practitioner) every eight weeks the first year, now it is every four months.
GYN/ONC: every eight weeks the first year, now it is every four months.
I go to my primary care doc for flu, cold....normal stuff.

The first year I felt like every pain, ache I wanted to call the ONC. There is a safety net when you are in treatment because you have someone looking at you weekly. The fear of every ache/pain "the cancer is back" never really goes away but you do start to feel a bit more confidence as time progresses. If you are feeling bad and you do not get satisfaction from your primary doc then don't be afraid to seek out another doctor. The bloodwork is a good starting point, did she order a CA-125?
LOL....after treatment I did feel like I wasn't the popular kid anymore, after being the center of attention with family and friends during treatment I went thru attention withdraw. I kinda wish a home made dinner would show up on my door step every so often!
Peace and hugs!
Mary

kikz

MK_4Dani said:

My follow up treatment:
Port flush: every 6-8 weeks and they check my CA-125
ONC: (actually the nurse practitioner) every eight weeks the first year, now it is every four months.
GYN/ONC: every eight weeks the first year, now it is every four months.
I go to my primary care doc for flu, cold....normal stuff.

The first year I felt like every pain, ache I wanted to call the ONC. There is a safety net when you are in treatment because you have someone looking at you weekly. The fear of every ache/pain "the cancer is back" never really goes away but you do start to feel a bit more confidence as time progresses. If you are feeling bad and you do not get satisfaction from your primary doc then don't be afraid to seek out another doctor. The bloodwork is a good starting point, did she order a CA-125?
LOL....after treatment I did feel like I wasn't the popular kid anymore, after being the center of attention with family and friends during treatment I went thru attention withdraw. I kinda wish a home made dinner would show up on my door step every so often!
Peace and hugs!
Mary

I do have
a CA125 scheduled every three months. 9/16 marked a year since my last chemo. I ended up very sick and spent a week in the hospital the first week of October. Thankfully they got me healthy so I could start my "new" life feeling really good. After a year and a half I did decide to continue with my primary. I have a good rapport with her and trust her. It's unfortunate that she is in the large number of medical professionals who miss the ov/ca signs. I gave teal toe cards I had with me to her staff. I will take some to the doctor along with the Dr. Oz sheet the next time I go in.

I feel better than I did when I posted. The bloating has subsided. As I suspected I feel it was constipation. But I was worried. I try so hard to not let this THING overtake my whole life. Sometimes it just gets to be too much. I really feel alone when it comes to my worry about recurrance. The thought is never out of my mind but I am usually able to stay a little detached or I am sure I would go nuts.

I will discuss my feelings about needing to speak to my onc when I am afraid I do have ov/ca related symptoms when I see her next. I will be seeing my gyn/onc in November and I have some questions for him as well.

Karen