Newly Diagnosed
I was diagnosed w ovarian CA in early June, at age 55 ... Was previously very healthy. I had abdominal surgery followed by a small bowel obstruction which required additional surgery, and JUST started chemo (cycle 1) last week ... So this is all new to me. In searching for a place to reach out and connect with others who may be having similar experiences, I found this website and am thankful for anyone who wishes to share their thoughts and feelings. The chemo was rough, I am having carboplatin and taxol combination week 1, then taxol alone week 2 and 3 for a complete cycle. I suppose "rough" is relative .... Day 1 was ok, the next 4 days feeling very weak, queasy. I have seen others write that chemo effects are cumulative ... Does this mean it will continue to get worse each time? I suppose what I'm looking for is any encouraging words (and stats!) about SURVIVAL and what to expect as far as side effects from chemo going forward. Thanks so much. Cathy
Comments
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Welcome Cathy
I too am new to this site but find it very helpful talking to others with OC. I was diagnosed 11/15/11 (3 weeks before my 60th birthday). I had total hysterectomy for what was thought to be fibroids (very large fibroids 7& 8 cm wide) with a CA125 of 663! The GYN/ONC surgeon honestly thought I did not have OC because I didn' have any typical symptoms other than lower pelvic pressure. This pressure was the ovarian tumors pressing down on my bladder and rectum after every meal. I was Stage 3C since 2 of the lymph nodes removed were positive. None of my major organs were affected. I started chemo 12/19/11 (Taxo/Carboplatin) 1 session every 3 weeks.
I was very nervous my first chemo but with all the anti nausea drugs I didn't have any adverse reactions. Only on the 4th day I had very bad aches and pains in my muscles and joints. By the 3rd session I took the L -Glutamine on days 2 -5 to ease the aches.
I had buzzed my hair off after the first chemo but I didn't lose my hair until the 3th chemo (Feb1st). I didn't have any blood counts drop until the 5th chemo 3/18/12. My Hgb was 8.5 and I was transfused with 2 RBC's units.
I had 6th and last chemo 4/4/12 and a CTscan 4/26/12 which was NED (no evidence of cancer)!!0 -
Anti-Cancer
Cathy,
If you want to research the suvival statistics, I can't help but recommend the book "Anti-Cancer" by David Servan-Schreiber. In the book the author conveys a realistic way to look at the statistics, primarily that you are not one, but are an individual. He also shares things you can do to keep your body healthy, therefore reducing the risk of cancer growing in it.
My prognosis was quite poor, but my treatment was successful and I've managed to remain NED for 2 1/2 years...so far. I have incorporated a comprehensive diet and lifestyle in an effort to support my initial treatment and to remain NED.
Taxol was tough on me too. I was receiving treatment once every three weeks, and didn't start to feel normal until a few days before my next treatment. I supported my body through chemo with high dose IV vitamin C, which helped reduce the side effects.0 -
Hi CathyTethys41 said:Anti-Cancer
Cathy,
If you want to research the suvival statistics, I can't help but recommend the book "Anti-Cancer" by David Servan-Schreiber. In the book the author conveys a realistic way to look at the statistics, primarily that you are not one, but are an individual. He also shares things you can do to keep your body healthy, therefore reducing the risk of cancer growing in it.
My prognosis was quite poor, but my treatment was successful and I've managed to remain NED for 2 1/2 years...so far. I have incorporated a comprehensive diet and lifestyle in an effort to support my initial treatment and to remain NED.
Taxol was tough on me too. I was receiving treatment once every three weeks, and didn't start to feel normal until a few days before my next treatment. I supported my body through chemo with high dose IV vitamin C, which helped reduce the side effects.
You have good reason to be hopeful and optimistic. There are many long-time survivors, some of whom are on this board. Come October 11, 2012, I will be two years NED (no evidence of disease). One of my friends is a nine-year stage 3C ovarian cancer survivor, and she just recently returned from a cruise to Alaska, one of many, many trips she has taken since being diagnosed.
It's my understanding that many of the effects of chemo can be cumulative, which means that they may not be for you. As a stage 2b, I myself had six sessions of carbo/taxol every three weeks during a three and a half month period of time. I had a lot of fatigue, lack of appetite and constipation usually just for the first five or so days after each session and then after that, I felt pretty darn good. To keep ahead of any potential queasiness, I took a couple of prescription anti-nausea pills the evening after each session and I never experienced any nausea or vomiting.
Please keep us posted when you can. We're here for you.
Take care,
Kelly0 -
Hi Cathy ! Sorry you arelovesanimals said:Hi Cathy
You have good reason to be hopeful and optimistic. There are many long-time survivors, some of whom are on this board. Come October 11, 2012, I will be two years NED (no evidence of disease). One of my friends is a nine-year stage 3C ovarian cancer survivor, and she just recently returned from a cruise to Alaska, one of many, many trips she has taken since being diagnosed.
It's my understanding that many of the effects of chemo can be cumulative, which means that they may not be for you. As a stage 2b, I myself had six sessions of carbo/taxol every three weeks during a three and a half month period of time. I had a lot of fatigue, lack of appetite and constipation usually just for the first five or so days after each session and then after that, I felt pretty darn good. To keep ahead of any potential queasiness, I took a couple of prescription anti-nausea pills the evening after each session and I never experienced any nausea or vomiting.
Please keep us posted when you can. We're here for you.
Take care,
Kelly
Hi Cathy ! Sorry you are here under these circumstances, but WELCOME. I was diagnosed april 11' at 54 with a 3c. I had carbo/taxol every 3 weeks until Dec. 11'. I am now on a combo of a pill- cytoxin 50 mg. daily and avastin every 2 weeks. My ca125 got down to 22 and then started to rise. I just started these meds the 2nd of August. There are so many helpful ladies here !! They have helped me so much. I think we are all in the same boat, but there is so much love and compassion here. Any question you need to ask, and anything goes, please ask it. Our family and friends mean well, but they really have no idea sometimes what we actually go through. It's actually my get away to read all and learn more. Please come here as often as you can. Prayers and love ..Jackie0 -
Welcome, Cathy
and as always we wish we could have met under different circumstances. You have found a place where can find understanding, knowledge and strenght. I am a 6 year survivor, 3C and I can tell you that those grim statistics that you'll find by surfing the medical websites are outdated. I, too am extremely healthy... except for cancer...
. No questions or subjects are taboo here and you'll find we discuss poop quite often. Chemo is rough, but we can help you deal with it. My first words of advice is to report all your symptoms and side effects to your ONC and nurses. They can make adjustments to your dosage etc. if they know how you are feeling. You are not alone.
(((HUGS))) Maria0 -
Cathy, I am on the same
Cathy, I am on the same chemo dense protocol that you are on. I am just into week 12. Carbo did make me nauseated and weak 1-2 days after treatment. Make sure they are giving you antinausea medicine. My doctor also changed my nausea medicine prior to the treatment when he knew it caused me to be so weak and nauseated 1-2 days after and it helped. Just let you doctor and nurses know each week and they can help adjust things so you can feel ok. It is all cumulative, but the nausea doesn't get worse, just seems to come more often (at least for me). I didn't usually get nausea with taxol treatments alone. Now I just get bouts of intermittent nausea. The fatigue does seem to get worse with time. Make sure you rest everyday and also get some exercise everyday. This will help. Kim0 -
Hi Cathy- I joined here akimberly sue 63 said:Cathy, I am on the same
Cathy, I am on the same chemo dense protocol that you are on. I am just into week 12. Carbo did make me nauseated and weak 1-2 days after treatment. Make sure they are giving you antinausea medicine. My doctor also changed my nausea medicine prior to the treatment when he knew it caused me to be so weak and nauseated 1-2 days after and it helped. Just let you doctor and nurses know each week and they can help adjust things so you can feel ok. It is all cumulative, but the nausea doesn't get worse, just seems to come more often (at least for me). I didn't usually get nausea with taxol treatments alone. Now I just get bouts of intermittent nausea. The fatigue does seem to get worse with time. Make sure you rest everyday and also get some exercise everyday. This will help. Kim
Hi Cathy- I joined here a few weeks ago... Unlike you finding when you are starting chemo, I found it after I finished chemo. Sure wish I would have stumbled upon it sooner. The ladies here have alot of great hints.
I did the cisplatin/taxol cocktail. 6 cycles. Each cycle consisted of day 1 (mon) taxol in the upper port and cisplating in the I P Port in my belly. Do you have one of those? Day 2 I was back for 2 liters of fluid.. Day 8(the following mon) i had taxol in the I P port then I was done for the remainder of that week and the next.
Round one went fairly well after I learned that ALOT of fluid intake meant ALOT. I am not a big water drinker so I was drinking half of what I should have been. Dehydrated amd ending up passing out on the kitchen floor. As far as side effcts they were pretty mild the first time and I thought gee. this isn't so bad. After round 2 they set in. The fatigue got worse and joint pain was bad. But that was as bad as it got throughout.... As long as you have a good anti nausea med you are good. Also, someone here took glutemine supplement and that helped the joint pain alot. I have read so many stories I am not sure who it was. The Fatigue - well you can't do anything about that. Just sleep when your body tells you to sleep....
I hope the process is not too rough.
I had my final treatment at the end of June and my scan. After a clean scan and a CA level of 10 I am NED (no evidence detected). Had my i p port out yesterday. The other i will keep till next spring.
Eileen0 -
Hello Cathy
Welcome to the board! This board and the wonderful ladies here has helped me deal with my diagnosis of 3c Fallopian tube cancer (treated the same as ovarian cancer). That was in June'10 and even though it looked pretty dire at the time I am still here and kicking after two years.
I was not on the same chemo as you are on initially but for me some treatments were harder to take (#3) and then at the end(#6) it was not as bad,everyone reacts differently though. The best advice I think is to drink plenty of fluids.
Colleen0 -
Stay on top of the neuropathy!
Take the supplements while you're going through chemo to help alleviate neuropathy in hands and feet (glutamine, alpha lipoic acid). It may seem like it's okay the first few rounds, but the more treatments you get, the side effects can begin accumulating. Drink lots of water too, if you can. It is a scary path to go down at first, but you will get through it. This is a great site to reach out for encouragement. There are so many incredible ladies dealing with the same thing you are and they will boost your spirits! I like what someone shared with me, we're not cancer survivors, we're cancer overcomers! Praying for you!0 -
NEDMyrav99 said:Welcome Cathy
I too am new to this site but find it very helpful talking to others with OC. I was diagnosed 11/15/11 (3 weeks before my 60th birthday). I had total hysterectomy for what was thought to be fibroids (very large fibroids 7& 8 cm wide) with a CA125 of 663! The GYN/ONC surgeon honestly thought I did not have OC because I didn' have any typical symptoms other than lower pelvic pressure. This pressure was the ovarian tumors pressing down on my bladder and rectum after every meal. I was Stage 3C since 2 of the lymph nodes removed were positive. None of my major organs were affected. I started chemo 12/19/11 (Taxo/Carboplatin) 1 session every 3 weeks.
I was very nervous my first chemo but with all the anti nausea drugs I didn't have any adverse reactions. Only on the 4th day I had very bad aches and pains in my muscles and joints. By the 3rd session I took the L -Glutamine on days 2 -5 to ease the aches.
I had buzzed my hair off after the first chemo but I didn't lose my hair until the 3th chemo (Feb1st). I didn't have any blood counts drop until the 5th chemo 3/18/12. My Hgb was 8.5 and I was transfused with 2 RBC's units.
I had 6th and last chemo 4/4/12 and a CTscan 4/26/12 which was NED (no evidence of cancer)!!
Thanks for your reply and CONGRATS on the NED!
Sounds like you are a survivor with quite a ways to go! Outstanding!0 -
YayTethys41 said:Anti-Cancer
Cathy,
If you want to research the suvival statistics, I can't help but recommend the book "Anti-Cancer" by David Servan-Schreiber. In the book the author conveys a realistic way to look at the statistics, primarily that you are not one, but are an individual. He also shares things you can do to keep your body healthy, therefore reducing the risk of cancer growing in it.
My prognosis was quite poor, but my treatment was successful and I've managed to remain NED for 2 1/2 years...so far. I have incorporated a comprehensive diet and lifestyle in an effort to support my initial treatment and to remain NED.
Taxol was tough on me too. I was receiving treatment once every three weeks, and didn't start to feel normal until a few days before my next treatment. I supported my body through chemo with high dose IV vitamin C, which helped reduce the side effects.
Congrats w the NED! That is so encouraging to hear. Thank you for your reply. Wishing you all the best.0 -
Congrats !Glad to be done said:Hi Cathy- I joined here a
Hi Cathy- I joined here a few weeks ago... Unlike you finding when you are starting chemo, I found it after I finished chemo. Sure wish I would have stumbled upon it sooner. The ladies here have alot of great hints.
I did the cisplatin/taxol cocktail. 6 cycles. Each cycle consisted of day 1 (mon) taxol in the upper port and cisplating in the I P Port in my belly. Do you have one of those? Day 2 I was back for 2 liters of fluid.. Day 8(the following mon) i had taxol in the I P port then I was done for the remainder of that week and the next.
Round one went fairly well after I learned that ALOT of fluid intake meant ALOT. I am not a big water drinker so I was drinking half of what I should have been. Dehydrated amd ending up passing out on the kitchen floor. As far as side effcts they were pretty mild the first time and I thought gee. this isn't so bad. After round 2 they set in. The fatigue got worse and joint pain was bad. But that was as bad as it got throughout.... As long as you have a good anti nausea med you are good. Also, someone here took glutemine supplement and that helped the joint pain alot. I have read so many stories I am not sure who it was. The Fatigue - well you can't do anything about that. Just sleep when your body tells you to sleep....
I hope the process is not too rough.
I had my final treatment at the end of June and my scan. After a clean scan and a CA level of 10 I am NED (no evidence detected). Had my i p port out yesterday. The other i will keep till next spring.
Eileen
So great to hear you have NED, no evidence of disease. Sooooooo just how much fluid intake is recommended after the taxol? I have the anti-emetic meds on board now, so that's improved. How much water over what period of time? Thanks and good luck to you!!0 -
NeuropathySara2011 said:Stay on top of the neuropathy!
Take the supplements while you're going through chemo to help alleviate neuropathy in hands and feet (glutamine, alpha lipoic acid). It may seem like it's okay the first few rounds, but the more treatments you get, the side effects can begin accumulating. Drink lots of water too, if you can. It is a scary path to go down at first, but you will get through it. This is a great site to reach out for encouragement. There are so many incredible ladies dealing with the same thing you are and they will boost your spirits! I like what someone shared with me, we're not cancer survivors, we're cancer overcomers! Praying for you!
Thanks for your response. I've not yet had a problem w neuropathy yet. Could you give me more detail on the supplements? Are they approved by your oncologist, or do you do this on your own? Also ... im probably not doing enough fluid intake ... After treatments, how much and for how long should the water intake go for?
Thank you for your support. Best wishes to you!0 -
Thankslovesanimals said:Hi Cathy
You have good reason to be hopeful and optimistic. There are many long-time survivors, some of whom are on this board. Come October 11, 2012, I will be two years NED (no evidence of disease). One of my friends is a nine-year stage 3C ovarian cancer survivor, and she just recently returned from a cruise to Alaska, one of many, many trips she has taken since being diagnosed.
It's my understanding that many of the effects of chemo can be cumulative, which means that they may not be for you. As a stage 2b, I myself had six sessions of carbo/taxol every three weeks during a three and a half month period of time. I had a lot of fatigue, lack of appetite and constipation usually just for the first five or so days after each session and then after that, I felt pretty darn good. To keep ahead of any potential queasiness, I took a couple of prescription anti-nausea pills the evening after each session and I never experienced any nausea or vomiting.
Please keep us posted when you can. We're here for you.
Take care,
Kelly
I appreciate your reply and the encouraging news about long term survival. I really needed to hear that right about now! Ironically Alaska is #1 priority on my new bucket list, and I have every intention of getting there next year. Best wishes to you.0 -
Help for NeuropathyCshoenfelt said:Neuropathy
Thanks for your response. I've not yet had a problem w neuropathy yet. Could you give me more detail on the supplements? Are they approved by your oncologist, or do you do this on your own? Also ... im probably not doing enough fluid intake ... After treatments, how much and for how long should the water intake go for?
Thank you for your support. Best wishes to you!
I just finished my 6 rounds of carbo/taxol and for anyone suffering from neuropathy, I have a suggestion. My naturopath suggested holding a metal water bottle full of ice and water during your entire carbo infusion (30 minutes or so). I tried it and it was amazing in helping my neuropathy. You have to hold it the whole time. It constricts the blood vessels in your hands and keeps the carbo from reaching them. He said to tie ice packs to your feet if you have a problem with neuropathy in the feet but I never tried that. My neuropathy was slowly getting worse with each treatment and it is almost completely gone now and I'm only 3 weeks out of treatment. Just a suggestion...worked great for me!0 -
IceCshoenfelt said:Neuropathy
Thanks for your response. I've not yet had a problem w neuropathy yet. Could you give me more detail on the supplements? Are they approved by your oncologist, or do you do this on your own? Also ... im probably not doing enough fluid intake ... After treatments, how much and for how long should the water intake go for?
Thank you for your support. Best wishes to you!
I also held ice and iced my toes during the infusions of Taxol, which is the drug I was on that could cause neuropathy. I also received a vitamin B6/B12 injection the days before each of my infusions from my naturopath. I had almost no neuropathy throughout my treatment. There are also cold caps that are said to be effective at preventing hair loss due to chemo. I didn't know about those until after I lost my hair. I did start icing my head during the Taxol infusions on my second treatment, and had about a half inch of hair by the end of treatment. I don't know how much water you should drink after chemo. But you should drink a lot.0
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