Worried about my mom...Help please??

[thezoo]

HI all,

I am wondering if anyone out there can help me?

My mom (63 yrs old) was dx'd with stage 4 OV in Feb. 05, she had a complete hystrectomy and the cancer metastized in her spleen as well so they removed that as well. Her oncologist told her from the start that he would never be able to put her into remission that the chemo would just keep her stable. So they did chemo for 2 years and every chemo she was either allergic to or it quit working. Her CA count when she first started was 27,000, one of the chemos she was on actually got her CA count down to 258 but she became allergic to it and had to stop it.
Now 2 years later, the dr. has told her that he has used every OC chemo there is and that she is terminal and there is nothing else he can do for and that she should go live the last months that she has.
She has accepted this and Hospice has been called in.
She has 4 children and 2 of us believe there is still more that can be tried and 2 of us think that she should just let Hospice do there thing because she is terminal and too far gone.
Her tumors and Lymph nodes (it is also in some of her bones in her ribs, pelvic and spine) have increased in size and she ascites which she has drained every 8 to 10 days but it has not gone to the liver, bowel or any other organ.

We have contacted Cancer Centers of America and she had an appt with them in OK in May but she cancelled it when her dr. told her she was terminal and doesnt feel she will make it until May.

I have read alot on the internet and have read several websites that says some cancer patients that are chemoresistant can have chemo in longer durations and become desensitized to that chemo.

If anyone has had the same or similiar situations or if anyone has any suggestions it would be more than greatly appreciated.

Thanks again

[thezoo]

Thank you Miss Pickles,

I have not heard of that but I will definetly look into it. I do not think mom
is interesting in clinical trials or research chemo. She had one chemo that was  a research and it caused severe blisters all over her body. But I will check it out just in case.

She has a bad last couple of days, we were so worried about her. She pretty much slept for 3 days straight and then we realized that the Hospice nurse added Ativan to her meds morning and night and years ago mom had a bad reaction to Ativan so we think that is what knocked her out for those days so we stopped giving them to her all together. Her last one was last night and today she seemed more alert but now her ankles are starting to swell and the nurse told us that this is the process. I just hope MD Anderson can help her.

Thanks for all the info.

Sincerely, Joyce

[Miss Pickles]

I am sorry to hear about your mother.  I don't want to give you false hope, but I recently read an article about how they were using nanotechnology to deliver little magnets or something directly to the tumor sites, then used heat once the magnets arrive at the sites to effectively kill the tumors.  It's very, very new, only used in mice, but they indicated starting clinical trials soon in humans.  If your mother truly wants to give up, it's her choice, but if she's only giving up because the doctors say there's no hope, maybe she can hang on long enough to get into the clinical trials.  Good luck to you and your mom.

[thezoo]

Hi Jatoo,

I will most definetly be praying for your wife and all others out there that need the prayers!

Bless you!

Thanks again!
Joyce

[thezoo]

First of all, thank you all so very very much for the replies!

I got a hold of MD Anderson today in Houston and on Monday her drs here are going to fax her paper work to them and they will look at them to see there is anything else that can be done. She will not have to travel there unless they think something else can be tried. I would rather she know this than give her false hope.

I think the hardest part is that she looks really good, except her belly area is really big. But then again it would not be much easier if she looked bad.

I told my mom today that this way we will all know that we did all we can. She said that she would love to be able to go in remission and live another 5 years if possible. However she is really torn between getting a second opinion or just letting nature take its course, because the Cancer Centers of America is far away and they can not get her in until May and she doesnt think she has that long and at MD Anderson if they feel they can try something different they can get her in in a 2 weeks tops, plus they are only 4 hours away. If she doesn't get nothing done she will die from the fluid crushing her lungs.

I do not want her to do this for me or anyone else, it must be her decision. She tries to please everyone. I just want to give her more options if there are any.

I do not think she has been on some of the chemos you all mentioned. I know that they tried Carboplatin, Taxol, Doxil, VP 16 and maybe Gemzar but I can not find the paper work for the Gemzar so I am not sure about that one.

I feel that the reason her dr. told her that there is nothing left for him to do is because she allergic/chemoresistant to all the chemos he has tried and that maybe another place or dr has some other ideas. But if we just around doing nothing then it will be to late to do anything at all.

I will keep you all posted as to what MD Anderson has to say.

Please keep us in your prayers!

Thanks again for the replies.

Joyce

[Jatoo]

That is an excellent decision. MD Anderson is one of the best hospitals there is for ovarian cancers. I think they are one of the hospitals that has a lot of clinical trials particularly on biologic drugs.

I will pray for your mom and please pray for my wife.

All the best,

Jatoo

[nyc lady]

The doctor is probably correct, there may be no cure for your mother, but to say that they have tried everything, is unacceptable.  As Jatoo stated, there are so many different chemos out there.  

I recently lost a friend to OvCa and although in the end she was terminal, they kept up with chemo as it kept her pain and the ascites to a minimum.  

Best wishes to you and your family.

[Jatoo]

Hello and I am sorry for your mom. I don't think they have tried all chemos probably alkylating agents (like Carbo, Cisplatin, etc) or alkaloids (like Taxol, etc) which can be or are cytotoxic. What about Avastin, Sorafenib, VEGF Trap?

My wife was tapped weekly with ascites last December, had peritonitis and after been given Avastin ( with reduced dose of Gemzar) in January all tapping of ascites stopped. Her CA 125 went down from 500 to 74. I can mention other drugs, but right now monoclonal or antiangiogenic drugs are very good in stopping ascites. There were women in Germany that were supposed to be dying 19-20 years ago that after been accidentally been given another monoclonal antibody (Ovarex Mab, now on Phase III) are still alive. You really need another doctor that think outside of the box.

We have to pray as if everything depended on God, but be proactive or use the human means as if everything depended on us.

I hope this helps.
Jatoo

[rmarie]

I am a person with OVCA stage 3, who just had my second surgery and will be starting chemo.  I understand what you are saying about not wanting to lose your mom, it is the hardest thing in the world, however she is telling you something.  You need to listen to her and talk with her.  I just finished a book by a Dr. Groopman "How Doctor's Think", he is a Oncologist and in his last 2 chapters discusses cancer treatment and the end of life.  He did a previous book on cancer, that dealt with living with it and dying.  None of us wants to think about dying, however to me, if this disease eventually wins, then I hope I have a physician who will be honest with me, and I have the courage to say enough and to enjoy the time I have with my family, feeling fairly good, with pain control, to leave good memories for my family.  When I am feeling courageous, I hope I do my job well and prepare my husband for that time.  Others may say fight till the end, but it is a personal decision, that we don't know what it will be until we get there.  Talk with your mom, your brothers and sisters and with hospice you can all help each other.  My thought and prayers are with you, this is a difficult time.