Advanced Ovarian

[OCSBT65]

My wife was recently told by her doctor that "the disease is blanketing her abdomen" and that "this is trouble". She is foregoing any future chemo treatments as she had a close call with Avastin at the end of last year and is not wanting to put any more poisons in her body. She has been having abdominal issues and has a hard time moving her bowels without the aid of an oil (mineral I think) and even then she sometimes needs to have an enema. She has pretty consistent pain in her abdomen and takes pain meds regularly to get a handle on that pain. I'm wondering how much longer should we wait before telling our kids, who recently went off to school, about her condition. I'm getting conflicting information as to a timeline, some are saying 6-12 months and others are saying 12-18 months, maybe longer. I know there is not an exact science but can someone shed some light on their experience if it is at all similar? I hate being held hostage by this monster!

[jr1971]

Hi Larry

Thanks for the message. I am glad to hear that your kids have taken it well. I guess that the emotional issues that kids go through are quiet and may come out in ways you don't expect. Keep talking to them - they may have questions that they ask each other but they haven't asked you.

My wife had a bowel obstruction earlier this year and they gave her a scan (follow-thru) with a substance called "gastrographin" (Spelling?). This is meant to act as a contrast in the scan but they have found that it actually helps to improve the flow thru the bowel. I am not sure if in your wife's situation it makes sense as a palliative treatment....

These must be tough times for you and your family. I don't envy your position right now. Your wife does sound like a strong lady, taking these tough decisions and looking to get quality time. Enjoy your time with her and thanks for your support.

Jon

[OCSBT65]

Hey jr,

How are things going? I hope you and your wife are holding up well. We decided to tell our kids last month and while we didn't go into detail we did let them know that the monster has reared its ugly head again and that Mommy has decided not to have any more treatments. They both have seemed to take it pretty well and all indications from teachers and coaches is that they told us the truth and are doing well. The benefit I've noticed thus far is they've become much closer with each other which makes us very happy.

Keep up the good fight my friend, you can do this. I am not going to lie to you, it has been incredibly difficult at times but it can be done. Prayers going out to you, your wife and your family.

Larry

[OCSBT65]

How are you doing? I hope you are feeling well.

My wife recently landed in the hospital because her doctor thought she had a bowel obstruction as she was not able to eat or drink anything over a 36 hour period. Fortunately the scan showed no obstruction but there are a few trouble spots where the bowel has only a "pencil lead thin" clearance. He advised her to start a couple of rounds of taxol to help with symptom control. He informed us that the treatments would solely be for that purpose and would not extend her life. She's decided to forgo the treatments stating that if it's not going to extend my life why bother. She had some severe reactions to it the last time she took it and didn't want to have that happen again and spend time in the hospital getting desensitized.

I am attaching an article that is very promising in the hopes of finding a diagnostic test to hopefully discover this monster sooner than they have been able to currently.

http://www.scientificamerican.com/article.cfm?id=ovarian-cancer-test

I wish you and your family all the best,

Larry

[jr1971]

Hi there

I am also one of the hostages here. My wife is still having chemo but we are struggling with some of the things you mention.

I know its easy for people on the outside to give advice, but one thing I would say is that your children will appreciate any time they have to enjoy with their mother. As we cannot predict the future with this disease I think it is best to tell your kids and let them enjoy the time they have. I know that the fear is that you make them hostages too, but you don't want to have the regret of your kids missing out on this time together.

I saw your message on another discussion about your wife surviving 7 years and seeing your kids graduate HS. I am really impressed by her determination and cannot imagine what it must be like to for you to have had 7 years supporting and encouraging her. I have only been doing this for 1 year and I am exhausted. Thanks for showing me that it can be done in the long term.

Good luck.

[marie3B]

You are so right about this disease holding us hostage.  Good description.  There may be a chemo that she can take to slow the progression.  I understand not wanting to endure more nasty poison, but some drugs can have less side-effects and may buy more time.  Unfortunately with no cure in sight that is what most of us are doing, buying precious time with our family and friends.  I have known of a woman that took only taxol in a lower dosage and got some time out of that.  I am sure no doc, but there may be something else to try. I hate that you and your family got caught in the grips of this monster as much as I hate being caught too.  I wish you the best.  Marie