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Newly Diagnosed

Cshoenfelt
Posts: 9
Joined: Aug 2012

Greetings,
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

Myrav99
Posts: 11
Joined: Aug 2012

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)!!

Myrav99
Posts: 11
Joined: Aug 2012

double post.

Cshoenfelt
Posts: 9
Joined: Aug 2012

Thanks for your reply and CONGRATS on the NED!
Sounds like you are a survivor with quite a ways to go! Outstanding!

Myrav99
Posts: 11
Joined: Aug 2012

another double posting

Myrav99
Posts: 11
Joined: Aug 2012

another double post

Myrav99
Posts: 11
Joined: Aug 2012

double post

Tethys41's picture
Tethys41
Posts: 1057
Joined: Sep 2010

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.

lovesanimals's picture
lovesanimals
Posts: 1266
Joined: Sep 2011

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

jadav1956
Posts: 95
Joined: May 2011

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 ..Jackie

Cshoenfelt
Posts: 9
Joined: Aug 2012

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.

2timothy1 7's picture
2timothy1 7
Posts: 337
Joined: Jan 2012

Hi Kelly
I noticed you said your friend is a 9 yr survivor. That is so encouraging to hear. Would you mind sharing if your friend has adjusted her lifestyle or done anything other than conventional treatment.
Thanks
Shawnna

Cshoenfelt
Posts: 9
Joined: Aug 2012

Congrats w the NED! That is so encouraging to hear. Thank you for your reply. Wishing you all the best.

Mwee's picture
Mwee
Posts: 1316
Joined: Nov 2009

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))) Maria

kimberly sue 63's picture
kimberly sue 63
Posts: 396
Joined: Apr 2012

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

Glad to be done's picture
Glad to be done
Posts: 558
Joined: Jul 2012

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

Cshoenfelt
Posts: 9
Joined: Aug 2012

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!!

Cafewoman53's picture
Cafewoman53
Posts: 735
Joined: Jul 2010

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.
Colleen

Sara2011's picture
Sara2011
Posts: 77
Joined: Oct 2011

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!

Cshoenfelt
Posts: 9
Joined: Aug 2012

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!

Marnel's picture
Marnel
Posts: 41
Joined: Mar 2012

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!

Tethys41's picture
Tethys41
Posts: 1057
Joined: Sep 2010

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.

Alnik
Posts: 56
Joined: Feb 2012

i was told that the ice caps could possibly slow down the effects of the chemo if used to prevent hair loss .not an expert on the subject but i knew i was not going to take a chance and god forbid have to do more chemo . However i wish i new if it was safe because my neuropathy is brutal after carbo/taxol as well

Carsen928's picture
Carsen928
Posts: 8
Joined: Aug 2012

Hi Cathy: I have been doing the weekly treatments since diagnosed May 7. I had taxol, carboplatin and avistan cycle 1 and taxol only cycle 2 and 3. The first treatments are the hardest and then it gets easier from there. You will get to know how your body responds. For me, I have my treatments on Friday and I am feeling great until Monday . Monday is my me day and I usually feel a little nausea and need a good 3 hour nap. I heard it was going to get harder as I had more but it wasn't like that for me. But listen to your body the first couple rounds so you are not planning and pushing yourself on a day you know you won't have your A game going. Also, if the meds they gave to you are not working 100% then ask for another series. I take zofran the first 2 days and then another one a third day( can't think of the name) also I was getting nausea confused with acid stomach which my nurse pointed out to take pepcid everyday and that was a huge difference. I am on my 6 round of 3 cycles. Havingi taxol weekly is sometimes considered a heavier dose then one time every 3 weeks so sometimes your blood counts may not be high enough to have treatment. I mention this because it happen to me twice but the first time it scared me. It was not a big deal, they gave me a shot of a cell stimulator and I was ready to go the following week. In my thoughts and prayers - Dawn

Alexandra's picture
Alexandra
Posts: 1246
Joined: Jul 2012

Hello Cathy and welcome.
Below is my experience with IV chemo (taxol / carboplatin every 3 weeks) - I had 4 rounds so far and now I am waiting for the debulking surgery.

1st round: day 1 after chemo was great, lots of energy and great appetite thanks to steroids. Days 2 through 5 were bad - puking my guts out, fatigue, lost a lot of fluids. 2 weeks after that - no problem at all. Hair fell out on day 13.

2nd and 3rd round: they changed my anti-nausea meds and I felt great for 6 weeks, ate everything I could find and was gaining weight. No one believed that I am on chemo.

4th round - still no nausea or vomiting and keep gaining weight. The day after chemo peripheral neuropathy started (loss of feeling in toes and tingling in feet) as well as difficulty swallowing. Fatigue in the afternoons, joints aches and back pain. Brain fog, loss of short-term memory. And the one that really upset me - eyebrows fell out.

Fingers crossed, I have not had any mouth sores, change in taste or bowel issues so far.

Throughout chemo I did not follow any special diet, did not drink nearly enough fluids, did not rinse my mouth with salt, did not protect my immune system (took out garbage, cleaned toilets, sprayed weeds, etc), self-medicated with supplements I bought off the internet without a prescription (DCA, B1 vitamin for neuropathy, mega doses of chaga extract for immune system, probiotics) and the worst offence of them all - smoked a pack a day. I don't condone any of this behavior, it's just my normal way of not following instructions and not taking anything seriously.

From cycle 1 to 4 my CA125 dropped from 1083 to 18 and CT showed "significant tumor shrinkage", ascites disappeared, and I had perfect blood counts.

To summarize: I believe that chemo effects are cummulative and that everyone reacts differently. Don't be scared of the worst case scenario. Too much negative information causes anxiety and some symptoms may be psychosomatic. Survival rate, progression-free rate are averages, that may be significant to the population as a whole but totally meaningless to predict one individual's outcome.

Best of luck to you Cathy

kimberly sue 63's picture
kimberly sue 63
Posts: 396
Joined: Apr 2012

Cathy,

I'm doing chemo dense the same chemo and same regime you are starting. I have five chemo days left(but it is taking more than five weeks to get through). It was pretty good with chemo every week in the first few weeks, then I started having trouble keeping my blood counts up, so I had to start neupogen (boosts the bone marrow to increase white blood cells) shots. They have helped, but I notice after a carbo/taxol week now, even with neupogen, I can't usually have chemo the next week due to low blood counts. I typically have to get a blood transfusion every 4-5 weeks due to low hemoglobulin. This is what has been typical for me. Things may be different for you.

Fatigue was a problem with on going chemo. I take a nap every afternoon. I did start walking about six weeks ago and I think it has cut my fatigue in half. So remember good diet and get some daily exercise.

Through all of it, the physical aspects of chemo have been ok for me. I also have worked every am as a nurse practitioner seeing patients. I think this helped me mentally get through these many weeks. Working took my mind off myself. The most challenging for me was the whole emotional roller coaster I have been on. Some days I feel emotionally stable and I can handle anything and I feel positive about where I am at with the cancer and can deal with it. Other days, I'm lost and totally emotional and worry about all that ovarian cancer means (it is usually worse when my hemoglobulin is low). I am sure all of us have felt this way and it is part of accepting the changes that we all have had to deal with. So I hope you have a great significant other who you can lean on through the ups and downs. Don't forget to accept help during this time and most importantly ask for help when you need it. Hope this helps Kim

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