Difficulty finding ovarian cancer patients

Diagnosed and surgery Aug 05. CA125 was 845. Chemo Sept-Jan, now on Avastin trial with infusions every 3 weeks. This will continue to Sept. Neuropathy in hands and feet, headaches, elevated BP and lots of fatigue and muscle aches, esp in arms.  Often have a limited range of motion. Fatigue usually starts 2-3 PM and lasts for 7 or 8 hrs.  Hair started to grow back in  Feb but seems to have stopped growing. Working p/t. My Ca125 ranges from 12-15.  I live in Phila area.

Would appreciate communicating with ovarian cancer fighters.

Annes

On 4/30/2009 Annes wrote:

Diagnosed and surgery Aug 05. CA125 was 845. Chemo Sept-Jan, now on Avastin trial with infusions every 3 weeks. This will continue to Sept. Neuropathy in hands and feet, headaches, elevated BP and lots of fatigue and muscle aches, esp in arms.  Often have a limited range of motion. Fatigue usually starts 2-3 PM and lasts for 7 or 8 hrs.  Hair started to grow back in  Feb but seems to have stopped growing. Working p/t. My Ca125 ranges from 12-15.  I live in Phila area.

Would appreciate communicating with ovarian cancer fighters.

Annes

Hi, Annes:  I have ovarian cancer.  Diagnosed in July, 2008 and had surgery August 4th, 2008.  The ovarian cancer was wrapped around the large and small colon and I had to have two splices one in the large and one in small intestine and reversable ileostomy.  That surgery was in February 13, 2008.  Everything has gone well for me.   Except when my surgeon did the reversal of the ileostomy he felt around and found two tumors which ended up malignet.  I had a ca125 of 904 at surgery and just before the reversal of the ileostomy it was down to 24 after taking Carboplatin and Taxol.  Now my ca125 is 79.  I just started taking Avastin yesterday along with Cisplatin and Gemzar.  I haven't have any problems with any of these yet. 

I know how you feel as far a feeling alone.  I too have not done much networking and have no other cancer patients to talk to.  But I am so busy even though I quit my job and am concentrating on getting well.

My tiredness is the first four days after chemo and then I have alot of energy.  They give me something to prevent getting sick and that really tires me out.

I hope this helps.

Charma

Welcome, I was dx in Feb.08 stage 3c. ca 125 was 13,000 I had surgery and debulking. ca 125 was then 7,222. I had 8 tx of carbo/taxol ca 125 went down to 40.I Lost my hair after the second round of chemo. Ct scans were all clear. My Gyn/Onc wanted to see my ca go into the normal range, which is 0-35. So I was put on Doxil,  well my ca 125I got down as far as 34 after the 5th treatment it started to rise. Another ct scan was down and it showed a very small tumor on my vaginal cuff. I am now on Gemzar.I have to say I feel really good. I have lots of faith in God. I live in the Scranton area. I had my surgery at the Lehigh Women's cancer Center. You have come to a good place for support. Please come back and post anytime to share your ups and downs.Keep a good attitude and never stop fighting.

Hugs and Prayers, Terry

Hi Charma,

I too am on Gemzaar and Carbo.  What are they giving you to boost your white blood counts?  I get Neulasta after every chemo and I hate it, but it brings my WBC back up.

Gayle

Annes,

     I don't live far from you - I am in Berks County. I was diagnosed with stage IIIC ovarian cancer during a routine hysterectomy in October 2007. Luckily, a gyn. oncologist was called in to compelte the debulking and the surgery was successful.  I was then scheduled for 8 rounds of carbo/taxol. Before I even started chemo, a small nodule was found in my vagina. So, I did 3 rounds of chemo, then had minor surgery to remove the nodule, and then 5 more rounds. I was done with chemo in April 2008, and have been in remission ever since. My ca-125 has been a steady 6. I fight this nasty cancer with everything I can ( nutrition, supplements, exercise, prayer, meditation, etc ). I have a 13 year old daughter who needs me and I plan to be around for a long time. We need to throw everything we can at this to try to get it under control and then keep it under control. Good luck to you and the other ladies fighting ovarian cancer !

Hi all on this posting: I am Nancy and I have Ovarian cancer stage 3c was dx july 07 Ca 125 was 6600, had hysterdectomy with full debulking, started cisplatin/ taxol in Sept, 07. Had one treatment of cisplatin and had kidney problems from it. Was chnged to carbonplatin and Taxol and finished that Jan. 08. end of.

Ca 125 went down over time, to 28 then started to go back up agian in August of 08, and has been climbing ever since. I started doxil in Dec. 08 after they did a Ct scan and found a small 4 mm tumor on my peritonum, lining of adbomen. I stopped Doxil in late march and I am now on Carbon/ gemzar. Ca 125 was last at 517 which was before I started this carbo / gemzar treatments. After my 6 treatment I will get another Ca 125 test to see if this is working.  Just praying and hoping it works.

If you want to be apart of a bunch of ladies with this trouble beast, there is a posting on page 3 of ovarian cancer, titled Chemothreapy with over 500 postings on it. We all have a great time and share our problems and frustrations, and help each other day to day. So, you want to chat come on and join in, love to have you all.

I am in Long Island NY and go to Sloan kettering. I am 49 years old and have no kids but 5 cats and a dog and 2 parrots. I am married and love to decorate and do crafts and love indoor plants and of course go shopping on my good days.

So come and join us,. Looking forward to hearing from you there.

Blessings to all and hope there is a cure for all of us!

Love nancy

On 5/1/2009 fiestysurvivor wrote:

Annes,

     I don't live far from you - I am in Berks County. I was diagnosed with stage IIIC ovarian cancer during a routine hysterectomy in October 2007. Luckily, a gyn. oncologist was called in to compelte the debulking and the surgery was successful.  I was then scheduled for 8 rounds of carbo/taxol. Before I even started chemo, a small nodule was found in my vagina. So, I did 3 rounds of chemo, then had minor surgery to remove the nodule, and then 5 more rounds. I was done with chemo in April 2008, and have been in remission ever since. My ca-125 has been a steady 6. I fight this nasty cancer with everything I can ( nutrition, supplements, exercise, prayer, meditation, etc ). I have a 13 year old daughter who needs me and I plan to be around for a long time. We need to throw everything we can at this to try to get it under control and then keep it under control. Good luck to you and the other ladies fighting ovarian cancer !

                  

                  

 

Hi! God bless you! My mom is just starting her battle and I want her to go into this fight with every piece of ammo. she can! What types of supplements did you take ? Specifically , what did your diet consist of? I need all the info. I can get for her and I appreciate any help you can offer. Thanks so Much!! Nicole