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What would you ladies do???   Help please... What would you ladies do??? Help please...

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Unread 11-15-2005, 07:39 PM
What would you ladies do??? Help please...

I value your opinions SO much and hope that you can share your thoughts about my situation:

I was diagnosed with OVCA in July 2004 after extreme nausea following a back surgery (lost 40 lbs. due to an abdominal abcess from the surgery), and have been on a rollercoaster every since. Had a total hysterectomy, and underwent 6 rounds of carbo/taxol...finishing in March of this year. Everthing went OK, usual side effects, neuropathy, etc. and CA125s went down. I was over 3,000 before surgery, 1,000 immediately after, and down in normal range after chemo. Have been gradually feeling better, gained all the weight back (UGH) and have started building my freelance business back up.

In april of this year, I had some problems with a root canal tooth (which also gave me problems during chemo) and started getting abdominal pains and arthritic legs and lower body. After a lot of research, found that root canals can cause all these symptoms, and had the root canal redone. A large abcess formed on my gums and stayed for the next 3 months while I had the dental work done, which failed, and finally had the tooth pulled in Oct. 2005. Within 2 weeks, arthritis was much better, and abdominal pain less severe. (I really think it was the infection from the tooth) Now comes the problem:

My CA 125 has been climbing 86 in August, 155 in October (before the tooth pull) and now 220 today! I still have abdominal pain, which my MD thinks is an ulcer, and am on medication for that. Now I know that any infection can cause an increase in the CA125, and kind of figured that the tooth was the reason for the increase, but now wonder about the ulcer.....Here's the question.

Today, my gyn/onc during the checkup visit expressed his concern about the rising CA125. My recent Cat Scan was perfectly clear, and the physical exam was fine....but Doc wants me to start on Tamoxifen as a precaution, right now.

Im not sure what to do, family isnt either. My greatest hope is that the ulcer is the culprit for the rising CA125, but doc doesnt want to wait and take a chance. I on the other hand dont like taking chemo drugs, especially if there's a chance that I dont need them. Have a followup appt after Xmas with gyn/onc to see if ulcer is better (how can it get better with all this on my mind!!) and to see if CA 125 goes down. But have a prescription which the doc expects me to take.

Has anyone had a similar experience?? How would you handle this.... Am making an appt with the gastro doc in the AM.... DONT KNOW WHAT TO DO!

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Unread 11-15-2005, 08:25 PM
What would you ladies do??? Help please...

Hmm, I think I would probably take the Tamoxifen. It is my understanding that the doctors look for doubling in the CA 125. Another option you have is second opinion with another gyn/onc. I guess I would want to cover the possibility.

Your CA 125 may be very sensitive to those teeny tiny cells.

Unread 11-15-2005, 08:29 PM
What would you ladies do??? Help please...

I'm confused, isn't Tamoxifen a medicine that is given to suppress hormones? If so, it isn't a chemo drug.
Maybe I am mistaken the name of the drug.

Needless to say, I think I would do as your doctor suggests, or seek out another opinion.

I am so sorry you are having such a roller coaster.... it just plain *****!
Sending you a big hug and lots of prayers. (not that I think you need them because anything physically is wrong,,... I'm sending them for emotional support)

XO Donna
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Unread 11-15-2005, 10:05 PM
What would you ladies do??? Help please...

Hi, I dont have any experience with what you are going through, but I feel for you. it's a dilemma, for sure...treat the rising number, even though you show no clinical signs of recurrance? Could the ulcer make the ca-125 rise? the ca-125 isnt' perfect, so I too would be very confused if I were in your shoes, and would question whether you are really in a recurrance or if something else is going on. Too many coincidences with the abcessed tooth and the ulcer, and I can't help but wonder if they are all tied in.
Can you ask to be sent for a PET/CT scan? That test would show microscopic bits of cancer, if there were any.

Also, I think I"d seek a second opinion with a cancer center, or at minimum voice your concerns and confusion to your gyn/oncologist and see if he can help you make an informed decision.

Good luck to you. I hope everything works out.

Unread 11-15-2005, 10:06 PM
What would you ladies do??? Help please...

I can't explain how it works but Tamoxifen has been used for ovarian cancer and there are studies going on to determine how effective it would be. Here is one article on the use of tamoxifen:


You can also search for studies for ovarian cancer.

Unread 11-15-2005, 10:25 PM
What would you ladies do??? Help please...

Why don't you want to take Tamoxifen? Women have taken it for breast cancer for years, with few side effects. It suppresses estrogen production and there are indications that it helps with ovarian recurrences. It is not a chemotherapy agent, it's an estrogen suppressor. It doesn't kill cells like chemotherapy but it starves them of estrogen. That's my understanding of how it works. If your cancer is estrogen receptive, as most pelvic cancers are, tamoxifen suppresses the production of that estrogen.

I would definitely take it. If it might suppress your tumor growth, why not take it? How will feel if you didn't take it and your CA125 goes up again? Will you regret not doing everything the doctor suggested you do? What is it that you fear will happen if you take it?

I would suggest, as others have, that you do some research on tamoxifen so that you are making an informed choice if you decide go against your doctor's advice. But I would do anything that might help suppress, or cure, or prevent, ovarian cancer.

Aren't ulcers caused by a bacteria? I don't think that they have anything to do with stress. And it seems that ulcers are generally pretty easy to treat, with medications to kill the bacteria and to prevent excess stomach acid. But you should see a gastro doctor to determine if you have an ulcer and to prescribe the medication to wipe it out.

Hope this helps!
Unread 11-16-2005, 10:20 AM
What would you ladies do??? Help please...

Thankyou all SO much...although I still don't know what I'm going to do. I very much have the attitude that I can beat this disease, although the last few days have been real "spirit busters"!

Jmberg....thank you for the website! Very informative, and I'll keep it in my list of favorites for backup research.

K9....asked doc about PET scan, and he doesn't think they are an accurate assessment of cancer presence...He's seen a lot of false positives.

Denton...I have another appt with my gastro doc, and will have to do an endoscopy to see if there is an actual ulcer present. (Was just hoping that the Protonix my MD gave me would eliminate the symptoms...guess not) At this point we were just assuming that was the problem. Just so tired of being poked and prodded!!
Also, I don't have a lot of luck with drugs....am allergic to quite a few of them, and others (like sedatives) dont work. Have had many procedure done where the Verset and Fentynal (spellings??? sorry) didn't work and I've been totally awake and allert for surgical procedures like colonscopies and even the insertion of my port. So Im always leery of new drugs that I may have to take.

Donna Fay....I guess tamoxifen works by blocking estrogen, binding to estrogen receptors. When this occurs, the cancer cells that depend on estrogen to divide stop growing and die. Sounds like a good idea, but seems like only a preventative measure, and not a cure. I'll have to do more research.

Thankyou all for the hugs and support! ....I really didnt expect an answer, just knew that you would all share your experiences and knowledge. Am feeling much better today, but still have research and decisions to make.

Bless you all
Unread 11-16-2005, 01:05 PM
What would you ladies do??? Help please...

s tac112

I'm kind of going thru the same thing as you. ugh !

My CA125 has always ran around 7. Started creeping up, 10, 13, 16, now it's at 21.7. Granted, I still have a CA125 drawn monthly. My CA125 was over 2000 before surgery, 500 after and down in the single digits by my third chemo. I've been freaking out about the rising trend in the CA125. I know it's still in the normal range, but it's not normal for me. 7 is normal for me.

Mid-Oct. i felt like I had a sinus infection, went to my GP who put me on antibiotic. CA125 drawn after antibiotics went up not down. I asked my gyn/onc and she feels that CA125's do not rise due to infections, adhesions, etc. Kind of burst my bubble there......

Had my CA125 drawn again yesterday. Hopefully it has stabilized or better yet went down.

I saw my GYN/ONC on October 31st, soon after my CA125 hit the all time high of 21. She said that i have a 40% chance of being in the start of a reoccurence. When I asked about a PET or CT scan, she said that even if I was reoccuring, any tumor with a CA125 of 21 would be too small to be picked up by the scan. So, I'm in a wait and see mode.

I hope my story has helped a little. Keep us posted on how you are doing and what happens from here, k?

P.S. I have no symptoms like abd. pain, etc. So, I'm hoping for good news.

Unread 11-16-2005, 05:37 PM
What would you ladies do??? Help please...

Hi tac112,
Your gyn/onc apparently wants to err on the side of caution and of course you will weigh her advise carefully and not ignore it. Since you are gathering information, perhaps you can set up a meeting with your gyn/onc soonest to discuss your concerns, doubts; etc., re taking tamoxifin if indeed these remain. You might even ask her if the gatroent. found an ulcer would this change her suggested treatment for you.
Should you still remain concerned that your gyn/oncs treatments may not be right for you, you can always seek another opinion. Please let us know how you make out.
s, peggiesue
Unread 11-16-2005, 06:28 PM
What would you ladies do??? Help please...

s Terri

Tamoxifen is not chemotherapy. There is a woman who posts on the acor ovarian problems list that has had stable disease for four years just by taking tamoxifen. It also does not work for many women, but is worth a try if it allows you to stay off chemo.
It sounds as though your ca 125 has been an accurate tumor for you in the past year.
Johns Hopkins strongly recommends CT/Pet scans for ovarian cancer. I believe even medicare now covers this for ovarian cancer. Since your CAT scan remains normal and your ca 125 is climbing I would strongly tell my doc I want a CT/PET to see what is happening.
Most inflamation that can affect your ca 125 is in the chest, abdomen and pelvis.
The above is just my own opinion and how I believe I would handle the situation.
I don't mean to upset or frighten you.

oxoxox karenann

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