Unbeatable Cancer - PLEASE HELP

My mom has been diagnosed with stage 4 ovarian cancer in june of 06. When she was first diagnosed the primary was unknown and had her start Carboplatin and Taxol. After 6 treatments she went into remission dec 06. In jan 07 it reoccured and she started doxil. After several treatments she was stable and then her CA 125 started rising rapidly. The doctors say she can't have surgery and they started her on Gemzar every two weeks. Ever since her CA 125 has been falling until 3 weeks ago. It started rising again.

The doctor told us that her CA 125 level is in the normal range and she could either stop chemo or continue which she wanted to continue but we increased it to every 3 weeks. Once we did that her CA 125 level went from 44 to 54 and now its up to 129. She is going in for another chemo this friday and I want to know if the doctors will put her back on the 2 week schedule again. Also, if this chemo has stop working is there anything else we can do?

When they started her on Gemzar they didn't believe she would make it cause we were draining 5 liters of fluid from her abdomen. But this medicine really helped. I don't know what to do anymore, she is only 57 yrs of age and I'm her youngest daughter at the age of 22. If this is it how long does she have to live? The doctor hasn't been very clear with us ever since we started this hole thing. My mom doesn't speak english so we do all the translation which I think the doctor doesn't trust us. Should we go for a second opinion even if we're too late? Please help I am overwhelmed with everything.

[Annekathryn Goodman, M.D.]

Dear Ozlem,

I think you have been given some very sage advice from many people here.
Some cancers can be controlled with surgery, chemotherapy, clinical trials, and other approaches. Some other cancers will grow back and cause illness despite many good therapies.

There are two very important parts to the journey that your mother is on:

1) Information: You and your family need as much information about what she is going through as possible.  It is really important for you to feel that you know everything about your mother's condition. Prognosis is a tricky guesswork. It is helpful to have a range of possible scenarios that your mother may face. but as Aussie points out, we (doctors) are frequently wrong.

So what is clear in the case of your mother is the following:
   - she has an ovarian cacner that has grown back
   -her cancer has responded to several chemo drugs but no for long
  --she had a one year remission from her primary treatment of carbo/taxol. so she may have platinum sensitive cancer.

2. Treatment options
  In addition to the drugs your mother has received, there are other treatment options:

   - clinical trials
   -using a platinum drug again (carbo, cisplatin, oxaliplatin)
   -topotecan
   -using taxol again in a differnt way such as weekly
   -oral cytoxan

The decision to use the drugs and how much will depend on how she is physically doing. This is called performance status. For a person whose performance status is 0,1, or 2 , chemotherapy is reasonable. For a performance status of 3 or 4  (not getting out of bed, unable to take care of self), chemotherapy is not helpful and  may be harmful.

I agree that a second opinion can help clarify issues
best wishes

[Ozlem]

I still haven't had any responses and forgot to include that when we started Gemzar the doctors told us that if this chemo doesn't work there is really nothing else to do expect home care and hospice. We are not ready for this, and I know we never will be but I still want her to stick around for a longer time. Please help, i can't take all this anymore.

[karikay]

Hi Ozlem. Sorry to hear you are going through this harsh time. I am not a doctor, just another daughter with a mom who has cancer.
However, two things I would say:
1) Even if your mom doesn't have any conventional treatment options left, she might be a candidate for a clinical trial of an experimental treatment. Sometimes this is the way to get access to a new treatment before it becomes widely available.
If you do a search for ovarian cancer on http://www.clinicaltrial.gov/   you might find a study that sounds like it would be worth pursuing.
2) I personally think that a second opinion is always a good idea just for peace of mind. What do you have to lose?
Good luck to you and your mom!

[spacewoman]

Do get a 2nd opinion of a GYN Oncologist and Oncology Surgeon.   I would have thought if Carbo and taxol put her in remission the first time that they would have tried it again or at least put Carbo with the the Gemzar.  You might ask your doctor also about Glutamine day before and day of chemo as it did prevent my own sister who survived 7 years on Carbo and Gemzar on and off from getting neuropathy from the chemo.  You can do a search on (cancer Glutamine).    I'm so sorry, but don't give up hope, and don't let her give up hope at least, until you get that 2nd opinion.

[Kimchi]

My comment to MARY 180 about recurring so soon after stopping chemo is starting to make me sit up in my chair.  Why did your Mom 's doctor not continue the same chemo meds?

[Aussie000]

I'm so sorry for your mother and your family because it does affect everyone, I'm in the same situation as you, my mother was operated on in May 05 and went on carbo/taxol. Her oncologist and surgeon were very clear to her & the family that she had 6 months to 2 years left to live. Well it's now been nearly 2 & a half years and her ca125 is only 22 as of yesterday. You must ask the doctors how long she has left as her ca125 is rising, I can't believe they would not tell you this. I would definately be seeking a second opinion because communication is vital here, there are some great doctors out there. It must be very difficult for your mother not speaking english so it is up to her family to take charge and start demanding clear answers.
I hope your mother is a positive thinking person because this can affect the outcome too.

[Anyuka]

I have witnessed several friends/family members suffer through chemotherapy treatments only to get much worse and die.  On the other hand, I have witnessed several cancer patients, friends of mine, heal completely without any chemotherapy.  They chose to go the holistic approach through a clinic that specializes in this approach.  They begin with a serious detox and then eat nothing but all natural organic raw foods, strictly focusing on keeping the body Alkaline.  Either the body is acidic or alkaline and cancer cannot survive in an alkaline body.  There is plently of information online.  Hope this helps.  If I had stage 4 cancer or any stage cancer I would completely change my eating habits in this manner.

Hope your mom gets better, above all else, pray, pray, pray....  keep the faith

[Ozlem]

Thanks a lot for all of the comments. The reason they did not continue carbo/taxol is because the cancer came back too soon so they think it is not going to work. And now she is feeling really good. We saw the nurse practioner on friday and she suggested a cat scan to make sure everything is alright. The doctor did not suggest this since may 07. Sometimes I think she might be a good dr but not enough to convience me that she is going to do everything she can to save my mother.

I'm so glad I found this site. It helps so much. Thank you everyone, I am definately going to take her in for a second opinion no matter what.

[SusiefromOZ]

Dear Ozlem,
I also reocurred in a short space of time and was considered to be carbo platin resistant. So I received 6 rounds of doxil which lowered my markers and slightly reduced my tumours but no remission. Then they put me back on carbo platin after a chemo break of a few months. My numbers tumbled so much that everybody was surprised. Ask the oncologist if she can try the carbo platin again. There are also plenty of other chemo's left to try. I have another friend who had been on constant chemo for 2 years and nothing was working. She had 7 litres of fluid in her abdomen which they wouldn't drain. Her oncologist put her on one of the older drugs as a last resort. Her tumour markers after a couple of months came down from 6000+ to 100+ and her fluid disappeared. I am not a doctor but my point is don't give up! Arm yourself with knowledge - the internet is a good place to start. Support groups and talking to others with the same disease is also good - the more you know the better. Get another opinion if you can. Good luck.

Susie

[typejs]

Hey Ozlem,

I read your story and it broke my heart to read it.  My girlfriend's mom is in stage 4 of Ovarian Cancer and she's been fighting it for 5 years.  Just recently her condition has gotten worse.  She has tried every single drug out there and many chemotherapies as well.  Her mother cannot speak English either, so my girlfriend and her brother has to translate.  There have been so many situations that her family has gone through.  Your story reminded me so much of my girlfriend's mom and I have been searching and searching for more and more information about this cancer.  I would like to ask you for a favor though.  Could you possibly email me your email address so that maybe my girlfriend can hear more about your mom's story.  I know she would love to share her's with you as well.  Maybe it could help writing to someone who's in such a similar situation and maybe there could be new insights and ideas from this as well.  I would completely respect any decision you make. =)

Thank You,
JS

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[Crickie]

Hello Ozlem, my thoughts and prayers are with you, your mom and family,

I also am fighting ovarian recurrence since March 2005 and am 45. You have received great advice here snd I agree with them all. I have learned that going for many opionons are so useful and help you get all the information you require to make the best possible decision for your unique situation and you (your mom) have to be happy, in control and positve in how you feel about it all.

I have just come back from seeing an Italian oncologist/researcher and am glad that I went. The doctors I have seen here so far have given me opionons from 'stop all treatments, your cancer is chemo resistant, nothing else to do -go do the things you love in life until the end comes' to 'not surgically able to remove this cancer as we'll nevr get it all -ovarian cancer always recurs-why bother opertating'.

And I understand their reason for telling me these things: Doctors say quality of life is more important than quantity - that surgery is risky and not a 'cure' -that once you've tried all these chemos and they haven't worked, it only makes your body weak and the cancer grows. Yes, all this is true but they  (the doctors) don't understand that we (the patient), our families and friends want us around for as long as they can have us -as my husband says "Doctors don't understand that I want you around for a long time".

Sorry for dragging this and, please, I'm not a doctor so I I'm saying what's in my heart as someone that is going through what your mom is going through. I've had many chemo regimens and am now trying my last one -if it doesn't work (I'm having an MRI this month) I'll go for a surgery that will remove one of the tumors that is making me bleed for the past year and a half -no it's not a cure but it will give me 'extra' time to fnd a chemo that does do something for me. Many doctors told me not to operate and many say it's possible with a high risk of having a bag (poop) and both bags.

Don't give up and I commend you on being such a caring, loving daughter. Your mom must be so proud of you. Support at this time is what she also needs other than the 'medical' needs. She has to understand hw she feels and express to you what makes her scared and the fears she has, especially when she doesn't understand the launguage. The medical jargon alone is enough to confuse and depress anyone!

As I mentioned -I will have you in my thoughts and prayers.