initial results on Thursday

kimberly sue 63

carolenk said:

Weekly taxol
Kimberly Sue

I'm sorry your path report showed cancer after all. I had started off with the dose-dense taxol but couldn't tolerate it. The weekly dose is less but the cumulative dose is more than if the taxol were given only every 3 weeks.

There was new research a couple of years ago that concluded that the better results from the dose dense taxol were possibly from an anti-angiogenic effect. If you look into "metronomic chemotherapy," you will find that it also has promising anti-angiogenic results; however, that daily dosing approach has not been adopted as first-line therapy.

You may want to discuss whether or not your oncologist has any thoughts on "maintenance chemo" which would begin if/when you reach NED status. Some women begin Avastin every 3 weeks & others have taken monthly taxol treatments (although I have not heard of many women recently who are doing maintenance with taxol).

Your hair will probably be gone between 2-3 weeks after your first taxol treatment. There is a free Look Good Feel Better class offered by the American Cancer Society where you can learn about head covering options & how to draw on eyebrows--it's worth going to even if you aren't someone who wears makeup.

If you are going with head scarves, you will want to get a cotton cap to wear UNDER the scarf--otherwise, the scarf can slide around & slide off your bald head & become a nuisance. I went thru chemo in the winter & just went with the wig & sleeping caps.

I don't know if you are opting for a port or not. I highly recommend one. It seems like chemo trashes our veins and a port is something that will make life a little easier for you.

Best wishes to you on the journey back to wellness.

preparing
Thank you for words of experience and wisdom.

I have already bought scarfs and the underneath cap. I decided since I am going through it in the summer scarfs would be more comfortable. Everything I heard about wigs is they are so hot. I have bought eyebrows and lashes that I am going to try. I decided if I have to go through these awful treatments....I was going to do it looking good and classy! I admit I am pretty vain and the loss of hair is a challenge for me.

I am also looking into and reading about what I can do to keep my body in optimal shape to fight this. I have already started diet changes. I also bought the Anti-cancer book and so far it is speaking to me and empowering me that I do not have to let cancer rule. I also bought the "Cancer-fighting Kitchen". I read a little of it and also find it to be something of empowerment. It actually has recipes to help reduce nausea from chemo, foods and herbs to stimulate the appetite, and overall food ways to keep your body in optimal health.

LaundryQueen

kimberly sue 63 said:

preparing
Thank you for words of experience and wisdom.

I have already bought scarfs and the underneath cap. I decided since I am going through it in the summer scarfs would be more comfortable. Everything I heard about wigs is they are so hot. I have bought eyebrows and lashes that I am going to try. I decided if I have to go through these awful treatments....I was going to do it looking good and classy! I admit I am pretty vain and the loss of hair is a challenge for me.

I am also looking into and reading about what I can do to keep my body in optimal shape to fight this. I have already started diet changes. I also bought the Anti-cancer book and so far it is speaking to me and empowering me that I do not have to let cancer rule. I also bought the "Cancer-fighting Kitchen". I read a little of it and also find it to be something of empowerment. It actually has recipes to help reduce nausea from chemo, foods and herbs to stimulate the appetite, and overall food ways to keep your body in optimal health.

I think you are on the right
I think you are on the right track by making dietary changes--not everyone is in agreement on the subject. Diet seems to be a very HOT subject on any cancer discussion board! I think each person has to do what they feel is best for them.

It must be hard for you to have to assume the role of "cancer patient." I imagine you have already been all over the Internet by now & at some point you will get to the place where you realize you are NOT a statistic. On the other hand, you ARE an uncontrolled experiment where n = 1.

I want to throw in my support for having a port--it is a minor surgery with a big benefit. I only got chemo thru my port & my veins became "hard to stick" anyway!

Kimmyanne

kimberly sue 63 said:

Well, results are in...I have been staged with serous papillary carcinoma stage IIIc. The only abdominal lesions were within the omentum,ovaries, and fallopian tubes and that was all removed.I had nodes on my diaphragm that were quite small, but the pathology of those was negative. I had positive abdominal washings which is a given. The good news is that all of my lymph nodes were clean. My oncologist is confident we can keep it under control and my type is very receptive to the chemo-therapuetic agents. So all in all it is a good result for ovarian cancer....but the sense of doom is still there!! The prospect of chrmotherapy is overwhelming.
She (my oncologist) wants to chemo-dense treatment which means day one I get carbo/taxol, then weekly taxol. This is the cycle of 3 weeks. Has any one done it that way?

chemo
In jan of this year, during surgery for a removal of an 18cm cyst and one ovary they found out tht the cyst had grown to 30cm and that i had ovarian cancer.(2nd surgery i ws staged and biopsied) I am stage 3c and actually will be receiving my 5th chemo treatment next week. I receive weekly chemo. When they told me I would be receiving chemo everyweek my jaw dropped. Initially it is scary at first but afterwards you get used to it. I'm not sure what they do anywhere else but before they start ea chemo treatment for me, they put in zantac zofron for nausea and benedryl and usually the benedryl makes me real sleepy. I start ea cycle with avastin taxol/carboplatin then 2nd and 3rd week of the cycle its just taxol. I have only had minimal side effects so far my blood count has went down so i will be receiving neupogen shots. They say everyone is diff you'll be ok. You'll probably meet other women with ovarian cancer. It is def scary to think of chemo, but you seem strong.

Kimmyanne

kimberly sue 63 said:

treatments
Well my doc wants chemo -dense treatments....meaning first week carbo/taxol, 2nd and 3rd week only taxol then repeat the cycle on week 4. total cycles are 6 which means 18 weeks of chemo.It is apparently the same dose given every three weeks, but now more often. So it is weekly chemo. I have been doing the research on chemo-dense treatments and the theory is that cancer cells are very proliferative in the early life cycle of the cancer cell. Also during this rapid multiplication the cell is most vulnerable so chemo is very affective during the cancer cells early proliferation. So going 3 weeks without chemo may allow some cells to get a little older and thus possibly not as responsive to the chemotherapy. Weekly chemo is not for everyone and needs to be individualized. I think it can be quite taxing on the system, but I'm young and healthy so hopefully I will tolerate it. There may be episodes that chemo is delayed due to blood counts.
However, my gyn/oncologist surgeon is nearly two hours away from me, so she is setting chemo up much closer to me. So now I am awaiting to meet my new oncologist locally who will manage the chemo. He comes with good credentials and he is into all the research and is on the cutting edge of new treatments that should be approved by next year. So I am anxious to meet him.

I might add...
I forgot to mention that after my initial chemo is done I will be receiving avastin maitenance for about 9 months. Will you be doing that aswell?

JoWin615

Scarves
I wore scarves during my baldness (wig = too hot for Florida!), and I discovered that a wide, stretchy headband worn under the scarf kept it from slipping.

Cheers,
Jo

LoveButterflies

kimberly sue 63 said:

treatments
Well my doc wants chemo -dense treatments....meaning first week carbo/taxol, 2nd and 3rd week only taxol then repeat the cycle on week 4. total cycles are 6 which means 18 weeks of chemo.It is apparently the same dose given every three weeks, but now more often. So it is weekly chemo. I have been doing the research on chemo-dense treatments and the theory is that cancer cells are very proliferative in the early life cycle of the cancer cell. Also during this rapid multiplication the cell is most vulnerable so chemo is very affective during the cancer cells early proliferation. So going 3 weeks without chemo may allow some cells to get a little older and thus possibly not as responsive to the chemotherapy. Weekly chemo is not for everyone and needs to be individualized. I think it can be quite taxing on the system, but I'm young and healthy so hopefully I will tolerate it. There may be episodes that chemo is delayed due to blood counts.
However, my gyn/oncologist surgeon is nearly two hours away from me, so she is setting chemo up much closer to me. So now I am awaiting to meet my new oncologist locally who will manage the chemo. He comes with good credentials and he is into all the research and is on the cutting edge of new treatments that should be approved by next year. So I am anxious to meet him.

I had the exact same
I had the exact same diagnosis and treatment as you Kimberly. The weekly treatments were tough. Just when I felt I started feeling better, it was time for another treatment. But, thank God I didn't have hardly any nausea or vomiting. I did have to have a blood transfusion about half way through because my RBC were so low. But, once I did that, I started to feel much better and finished strong. I'm on Avastin every 3 weeks now until October. I have another CT scan on Tuesday and hope everything will be NED just like the last one.

Stay strong. Come to the board often for encouragement or simply to vent. We're praying for you and sending you (((hugs))).

Carmen

kimberly sue 63

Kimmyanne said:

I might add...
I forgot to mention that after my initial chemo is done I will be receiving avastin maitenance for about 9 months. Will you be doing that aswell?

Avastin
They have not discussed that yet.

kimberly sue 63

LoveButterflies said:

I had the exact same
I had the exact same diagnosis and treatment as you Kimberly. The weekly treatments were tough. Just when I felt I started feeling better, it was time for another treatment. But, thank God I didn't have hardly any nausea or vomiting. I did have to have a blood transfusion about half way through because my RBC were so low. But, once I did that, I started to feel much better and finished strong. I'm on Avastin every 3 weeks now until October. I have another CT scan on Tuesday and hope everything will be NED just like the last one.

Stay strong. Come to the board often for encouragement or simply to vent. We're praying for you and sending you (((hugs))).

Carmen

how long
Carmen, How long have you been dealing with OVCA.

kimberly sue 63

LaundryQueen said:

I think you are on the right
I think you are on the right track by making dietary changes--not everyone is in agreement on the subject. Diet seems to be a very HOT subject on any cancer discussion board! I think each person has to do what they feel is best for them.

It must be hard for you to have to assume the role of "cancer patient." I imagine you have already been all over the Internet by now & at some point you will get to the place where you realize you are NOT a statistic. On the other hand, you ARE an uncontrolled experiment where n = 1.

I want to throw in my support for having a port--it is a minor surgery with a big benefit. I only got chemo thru my port & my veins became "hard to stick" anyway!

A patient
Yes it is hard for me to accept the cancer diagnosis, which i am sure everyone has had this transition. At times it seems surreal. 6 weeks ago I was an active busy woman with a busy internal med and pain practice and enjoying life with my husband and dogs. And enjoying visits from our girls.
6 weeks later.....I have had major abdominal surgery and a diagnosis of ovarian cancer. I question why...
I have episodes where I just cry, and then I try to be strong and push to remember the positive aspects of my current situation.
I treat patients, Ive never had to be the patient...

I have learned how fantastic my husband is...He has always been great, but he really has stepped up to the challenge this time. I've learned that my four daughters have grown into four beautiful women with deep compassion and strength. And I have felt the kindness, friendship and love from my work companions and our friends. It brings me to tears every time I think about it.

lulu1010

JoWin615 said:

Scarves
I wore scarves during my baldness (wig = too hot for Florida!), and I discovered that a wide, stretchy headband worn under the scarf kept it from slipping.

Cheers,
Jo

Hi Kim
So sorry for your diagnosis. I am also an RN and though a little older than you was very healthy and had so many plans and things to look forward to. I was diagnosed Aug 2010 with 3c serous pap also. Actually I had Primary Peritoneal but it was from the ovary cell. It was not in the ovary or lymph nodes but scattered outside the colon. I did 4 Carbo treatments before the surgery and then I did the dense dose carbo/taxol for 6 more cycles. I am being treated at Cleveland Clinic. I did not work for about 7 months. I then went back PRN. I did a vaccine trial after chemo. Was in remission for 9 mos. In March of this year they found 3 small tumors near my colon. I am now on Doxil. I decided not to go back to work when I had the recurrance but now I am sorry I made that decision. Dr says I could be stable on Doxil for years and I really need work to take my mind off the cancer every once and a while. Things are not all bad. Doxil does not make you sick or lose hair and I am vacationing in Maui this week.
I know how hard it is. I think I cry more with the recurrance.It all seems so unfair. I was so sure I had it beat. Chemo worked very well for me the first time and I am trying to be much more positive and understand that I can live with the disease. I am also BRCA 2 positive which makes me more sensitive to chemo which is good.

I have heard of many with 3c and even stage 4 that have done well and lived for many many years. I pray yours is gone for good after the chemo. (I had been sick for a long time before diagnosis so it had spread around the peritoneum.)I love your positive attitude. That is the most important thing.

lulu1010

JoWin615 said:

Scarves
I wore scarves during my baldness (wig = too hot for Florida!), and I discovered that a wide, stretchy headband worn under the scarf kept it from slipping.

Cheers,
Jo

Hi Kim
So sorry for your diagnosis. I am also an RN and though a little older than you was very healthy and had so many plans and things to look forward to. I was diagnosed Aug 2010 with 3c serous pap also. Actually I had Primary Peritoneal but it was from the ovary cell. It was not in the ovary or lymph nodes but scattered outside the colon. I did 4 Carbo treatments before the surgery and then I did the dense dose carbo/taxol for 6 more cycles. I am being treated at Cleveland Clinic. I did not work for about 7 months. I then went back PRN. I did a vaccine trial after chemo. Was in remission for 9 mos. In March of this year they found 3 small tumors near my colon. I am now on Doxil. I decided not to go back to work when I had the recurrance but now I am sorry I made that decision. Dr says I could be stable on Doxil for years and I really need work to take my mind off the cancer every once and a while. Things are not all bad. Doxil does not make you sick or lose hair and I am vacationing in Maui this week.
I know how hard it is. I think I cry more with the recurrance.It all seems so unfair. I was so sure I had it beat. Chemo worked very well for me the first time and I am trying to be much more positive and understand that I can live with the disease. I am also BRCA 2 positive which makes me more sensitive to chemo which is good.

I have heard of many with 3c and even stage 4 that have done well and lived for many many years. I pray yours is gone for good after the chemo. (I had been sick for a long time before diagnosis so it had spread around the peritoneum.)I love your positive attitude. That is the most important thing.

Cafewoman53

Ovations for a Cure
They have a website where you can get a beautiful bracelet for being a "Teal Princess". It is really pretty. Good luck with your treatment it will go by faster than you think.
Colleen

whiterose

Dose-Dense
Is this "Dose-Dense"? When I had my chemo I had taxol every week for three weeks. Then a week off. On one of those taxol treatments, they infused a large dose of carboplatin also. (So, one out of every three weeks.) This went on for 8 cycles. I've read that other people had their treatments once every three weeks. So, does that mean two weeks off? I'm confused.

carolenk

whiterose said:

Dose-Dense
Is this "Dose-Dense"? When I had my chemo I had taxol every week for three weeks. Then a week off. On one of those taxol treatments, they infused a large dose of carboplatin also. (So, one out of every three weeks.) This went on for 8 cycles. I've read that other people had their treatments once every three weeks. So, does that mean two weeks off? I'm confused.

Modified dose dense chemo
Whiterose

I would consider your treatment as "dose-dense taxol" modified to allow a week to recover from the chemo before starting another cycle. I watched a YouTube video where a doctor was excited about what the Japanese had researched using an old drug in a new way.

This doctor commented that the dose-dense approach had a better overall survival rate, too.

This doctor (on YouTube) said that the oncologists like to wait until TWO studies have been done that confirm these results before they adopt a new way of doing chemo. I don't think a second study has been published (or done yet); however, GYN/Oncs are jumping on the band wagon with the "dose-dense taxol" already--maybe because the Japanese study (published in The Lancet) had a lot of validity.

Linda Procopio (may she rest in peace) posted info about intraperitoneal (IP) chemo & the Japanese research on dose dense taxol on this discussion board in February 2011; if you want to search for it, try using the words "dose dense taxol."

LoveButterflies

kimberly sue 63 said:

how long
Carmen, How long have you been dealing with OVCA.

Not long, but it truly seems
Not long, but it truly seems like forever. I was diagnosed on 6/28/11, thought I had appendicitis, I wish I did now! I finished my weekly chemo mid December and since then have been on Avastin every 3 weeks as maintenance therapy. I'm on a clinical trial for Avastin and it will end October 2012. A total of 15 months of treatment. I was declared in remission in December with a clear scan. I go for another scan tomorrow and I'm praying that it will still be NED. It should be since my ca 125 was 18 last month.

Hope this helps.

Carmen

whiterose

carolenk said:

Modified dose dense chemo
Whiterose

I would consider your treatment as "dose-dense taxol" modified to allow a week to recover from the chemo before starting another cycle. I watched a YouTube video where a doctor was excited about what the Japanese had researched using an old drug in a new way.

This doctor commented that the dose-dense approach had a better overall survival rate, too.

This doctor (on YouTube) said that the oncologists like to wait until TWO studies have been done that confirm these results before they adopt a new way of doing chemo. I don't think a second study has been published (or done yet); however, GYN/Oncs are jumping on the band wagon with the "dose-dense taxol" already--maybe because the Japanese study (published in The Lancet) had a lot of validity.

Linda Procopio (may she rest in peace) posted info about intraperitoneal (IP) chemo & the Japanese research on dose dense taxol on this discussion board in February 2011; if you want to search for it, try using the words "dose dense taxol."

Dose Dense
Thanks carolenk!!

kimberly sue 63

LoveButterflies said:

Not long, but it truly seems
Not long, but it truly seems like forever. I was diagnosed on 6/28/11, thought I had appendicitis, I wish I did now! I finished my weekly chemo mid December and since then have been on Avastin every 3 weeks as maintenance therapy. I'm on a clinical trial for Avastin and it will end October 2012. A total of 15 months of treatment. I was declared in remission in December with a clear scan. I go for another scan tomorrow and I'm praying that it will still be NED. It should be since my ca 125 was 18 last month.

Hope this helps.

Carmen

wow we are similar
I had two episodes of pain a week apart and thought initially I was having an appendicitis. After the 2nd episode it did not resolve as quickly so then I thought maybe a kidney stone. I was leaving the next day for Houston for a conference so the day before I had the Dr. I work with order me a pelvic and abdominal xray. No stones, but that is how I found the enlarged ovary and started my work up which lead to surgery and then my diagnosis.

kimberly sue 63

LoveButterflies said:

Not long, but it truly seems
Not long, but it truly seems like forever. I was diagnosed on 6/28/11, thought I had appendicitis, I wish I did now! I finished my weekly chemo mid December and since then have been on Avastin every 3 weeks as maintenance therapy. I'm on a clinical trial for Avastin and it will end October 2012. A total of 15 months of treatment. I was declared in remission in December with a clear scan. I go for another scan tomorrow and I'm praying that it will still be NED. It should be since my ca 125 was 18 last month.

Hope this helps.

Carmen

Congrats on NED!!!
I hope you maintain that sweet status of NED!