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Sister needs positive stories

pat4428
Posts: 1
Joined: Jun 2005

My sister was recently diagnosed with stage 1C ovarian cancer. She has had one chemo treatment so far and has lost most of her hair. So far all she has read or heard are horror stories. Does anyone have any positive survivor stories? Also anyone have any tips on how to get thru some of the chemo side effects, such as, shooting leg pains, tiredness, headaches? Also any special web sites out there to purchase hats, scarves, wigs?

Thanks

diana0903
Posts: 4
Joined: Mar 2004

I think I can help here. I was diagnosed with stage 1C clear cell ovarian cancer in September 2003 at the age of 40. Had surgery and went through 6 rounds of chemo. Had all the side effects of the chemo, hair loss, leg pains, even a real special rash to enhance my looks! I know the side effects are not at all pleasant, but they will pass and once they do you will have a new appreciation for what it is like to feel good! I have always been very active to tried to exercise as much as I could through the treatments. Since my last treatment in January 2004 I have ridden my bike over 6000 miles, run at least 2 times per week and really am in the best shape of my life. I work daily on keeping things in perspective, and enjoying everyday. I have excelled in my career and am able to spend quality time with family and friends. Tell your sister to stay positive, love, laugh and know there are MANY, MANY Survivors.
Every Day is a Good Day.... Some are just better than Others
Diana

mopar
Posts: 1954
Joined: Apr 2003

First of all, I'm sorry to hear about your sister. She and all of you will be in my prayers. But please don't give up hope. I am a 5-year OVCA (Stage 1C) survivor! And there are MANY other inspirational and encouraging stories on this site and elsewhere.

I lost my hair also. I had little bits that remained so I just had them buzz the rest off and got a wig, which I mainly wore to work. At home I wore a terry cloth turban or sometimes a hat. Whatever makes your sister comfortable. What state are you located in? I'm in Michigan. There was a woman who worked at a local beauty salon here who shaved those last few hairs off and helped me pick out a wig. They were able to order it for me. There were other wig shops also available, and they had turbans, hats, etc. You might also want to contact your local American Cancer Society. They had a great class called 'Look Good, Feel Better'. It talked about special situations regarding hair, skin, etc. They showed how to apply make-up (and actually gave us a beautiful kit) and how to take care of your skin, etc., wear scarves, hats, etc.

As far as the side effects, the pains in the legs is called neuropathy. I had it also in my feet, arms and hands. After chemo it will lessen and hopefully go away completely. It's basically nerve damage, so it takes time. Is her doctor attentive to pre-chemo meds such as anti-nausea, etc.? I also had a nutritional approach. I shouldn't get too lengthy here, so just click on my name in the list if you want to e-mail me. I'll be happy to tell you more.

In the meantime, having hope and being as positive as possible will make a big difference in your sister's recovery and how she gets through this all.

My prayers are with you. Please keep us informed!

Monika

AuthorUnknown
Posts: 1563
Joined: May 2006

Hi, yes there is life after OC....I am a 4 yr 6month survivor. Stage IIIC, 6 rounds, 6 months, Taxol and Carbo. My best advice is to 'go with it' do not push too hard and let your body do what it needs to do to gets rid of the 'bad guys' and built good healthy cells. Stage 1C is quite 'curable'. I chose to take a few chemical drugs as possible. EAT, drink plenty of water and take vitamins. Get some exercise even when you feel you can't....have this sweet sister of yours walk you 20 yards outside if thats all you can handle but do it. do whatever it takes to get well and get well you will! My attitude was, we dx'd it, we got rid of it, we poisoned the bad cells. The rest I just 'went with it' because you can do little else. In time you will rise again. My faith in God sustained me. I welcome further discussion...swalchw@netscape.net...if you would like to contact me. Sweet Sister who posted this, you are wonderful to seek support for your sister. Please don't push her too much, this is rough stuff! She will, by sheer human nature, begin to 'do' for herself as she recoveres. I t takes a long time too. There will be a new normal. The most fun thing is to have a Hat Party for her! No wigs for me! Several friends can come a bring her cute hats and scarves! They love her and they can do somethng positive and she will love the FUN! I had 2 or 3 favorites I wore most of the time. Soft was what I preferred and I put scalp treatment on my head. Get that make up on girl and as much as is possible do what has been nornal for you. I had my teeht cleaned befor emy counts dropped too low. After a period of time I did my own nails too because of the risk of exposure to infection in public maincure salons. Lots of Love and Lots of Luck!! You are in my prayers. Teri50...Thriver!

groundeffect
Posts: 651
Joined: Mar 2003

I was diagnosed with 1C Ovarian and 1B Uterine cancers in September 2002. I knew I had the uterine when I went in for surgery; the ovarian was a surprise. I have not had any further evidence of them.

The hair loss is no great deal, really. My hair came back a little wavy at first, but has resumed its usual thick, straight nature.

I had the standard carboplatin/taxol chemo, and experienced fatigue for a couple of days after the sessions. I was very grateful for my mother-in-law's preparation of meals for us for those days.

I did not have shooting leg pains or any nausea, and absolutely maintained my weight through my treatments-so well I joined back up with Weight Watchers as soon as my docs gave me the go ahead!

You can get a pattern for a chemo beret at
http://www.nancysnotions.com/Nancys/assets/html/gailsckberet.asp This is a page that has a free pattern for a "Creative Kindness Beret", a very simple project that is very useful for one who has lost their hair. Made with polar fleece, they are very warm and nice to sleep in; made in a lightweight knit, they're good for summer.

If you're making them as gifts, you might want to make 3 for each person: one to wear, one to wash, and one to have ready for the transition. I wore them all the time when I didn't have a wig on!

The American Cancer Society publishes a catalog of head coverings and hats, too. You may be able to find a way to get one through this website, but I found them available at our local cancer center.

My advice to your sister is to not anticipate too much by way of side effects, but not be surprised if she gets them! I think I had more trouble from surgery-related pain (the gas pains can be a real problem) than any I had from chemo!

megbrorn's picture
megbrorn
Posts: 13
Joined: Apr 2005

I am so sorry to hear about your sister. My Mother in law has a recurrance of OC. She is on her 4th dose of carbo/taxol and is doing well. She is tired after her treatments; but has a wonderful attitude. Her CA 125 went from 722 to 60! We are so encouraged!
I found a great website www.headcoversunlimited.com. They have all kinds of hats and turbans that are quite stylish! GOod luck to your sister and your family.

stark
Posts: 1
Joined: Jun 2005

I just turned 29 and I finished my last round of chemo for ovarian cancer on March 18. I had moments when I was down, but I always go to bed feeling blessed that God has given me another day. The best advice that I can give your sister is to try to live as normal a life as she did prior to her treatments and lean on God, family and friends. As for you, be there for her,even if it is simply sitting in the chair next to her. My support system and prayer got me through.

Snowberry
Posts: 1
Joined: Jul 2005

Hello,
I was diagnosed with Ovarian Cancer 12/2004. My CA-125 was at 1617. I was so very scared, I had no idea what to do, what to think, what to feel. I had surgery within 2 weeks of being diagnosed. Both ovaries were removed along with 9 liters (27 pounds) of fluid (ascites). I was staged at 3c. Due to the amount of fluid, tumors, etc. my surgeon was not able to do a complete hysterectomy. 4 weeks after my surgery I started chemo (Taxol & Carboplatin). I am on a protocol that involves getting chemo every week for 3 weeks then off a week, and so on. I completed 4 rounds of treatment and watched my CA-125 fall. 937 (2-22-05) 165 (3-09-05) to 97 (4-13-05) then down to 15 (5-04-05). I was amazed and felt very lucky. I also know that just because the CA-125 has dropped to within the normal range does not mean that the cancer in me is gone. My battle is far from over

I just had my second operation on 6/24/05 and had my uterus and cervix removed, along with the peritoneum. My doctors were very happy. All that was left were microscopic cancer cells which they HOPE will be eradicated by 4 more months of chemo. I remain optimistic and am feeling great. Just a week after surgery and I cannot believe how much better I am doing from the first time I had surgery.

For me, I try to stay positive, not dwell on having cancer and just keep moving forward with my life. I lost the friendships of the two people closest to me during this time and if anything, that has been worse than finding out I have cancer. Hopefully your family will surround your sister with UNCONDITIONAL love. Just be there for the times that she needs you. I know I still have got a long way to go and remain hopeful that my treatment will continue to bring about good results. I wish your sister the best.

Cynthia
Cancer may take my life but it will not control my life!

amjjka
Posts: 2
Joined: Jul 2005

Hi, my name is Amy. I was diagnosed with stage 1 ovarian cancer at the age of 21 in 1993. I am now a 12 year survior. I used to ware a baseball hat that I decerated with buttons that my grandma had. or just went with out. I do know if a wig is warn to much the hair may not come back in. and besides that they are hot and ichy.

Pnndrgn63
Posts: 1
Joined: Jan 2005

I was diagnosed Oct. 18, 2004. I had a complete hysterectomy the following day. 13 inches of my colon and a portion of my rectum were removed.

Yes, I was sick during treatment, but it wasn't so bad. Yes, I lost my hair, but I thanked my parents for giving me a well-shaped head. They threw me a hat party and my cub scout pack gave me some very nice scarves. I missed out on the mouth sores, thank goodness.

I had some excellent advice from a breast cancer survivor. Allow yourself the down times, but bounce right back up. Positive additude, good doctors, family, friends, and lots and lots of prayers are what got me through. My MedCert nurse, Lisa, was always there to listen and help with little ideas to make things better.

I just finished treatments June 6th, 2005. My tests so far have all come back very well. My hair is growing back! I'm getting stronger everyday. I take each day one at a time. I'm seeing an holistic/herbalist to help me get back to where I was and to hopefully keep it from coming back.

Keep Positive......it's the best medecine there is!
Huge hugz for your sister. :-)

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