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Stage 4 Dx

Hi.  My sister is recovering from surgery.  She has stage 4 disease and our family is looking to get educated as quickly as possible on resources, treatments, trials etc.  I would appreciate feedback on useful web sites, organizations etc.  Thank you.
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Avatar universal
Thanks for the comments.  

Stan, I don't know the specifics to a level of detail but I do know there was tumor left behind and that there are malignant cells in the pleural ascites.  We are researching everything but right now the task is too large.  We need to have the MD's and counselors narrow our focus so we aren't wasting time on things that are not applicable.  We've made that request and should have a better idea by weeks end.

Van, I think she really needs to see and talk to a living, breathing person who has or has had advanced disease.  I know that will happen once she is discharged but the gap between surgery and the outpatient resources ignores this period of mental anguish.  There is only so much reassurance family or clinicians can do because we don't have cancer.  We can't relate on that level.  I'm surprised this isn't standard practice.

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Avatar universal
Ray,
It is difficult to watch, it's frightening, maddening, and so humbling...all at the same time.
Your sister's questions are similar to what my Mom and Aunt whent through.  The Drs treated my Mom for pneumonia for over a month before they figured out what was really wrong.  She always wonders if she had gone to a different Dr or if she had a hysterectomy after my aunt was diagnosed would they have caught the diagnosis earlier or maybe she wouldnt have gotten it at all.  Its often misdiagnosed at first, and that is why they say this is the cancer that whispers and why there are so many people diagnosed at late stages.  Please tell your sister she is not alone in this.  One of the things that has helped my mom are all of the women she meets during her chemo treatments.  They share stories and  experiences.  She has met many women who are stage 4 and have been survivors for many, many years, with a great quality of life.  Hopefully there is a local cancer support group (maybe even Ovarian specific) you sister could get involved in after she recovers from surgery.  It took my mom a bit of time.  She couldnt research it or look on the internet..it was all too overwhelming at first.  Hang in there and I'll say a prayer for your sister. Janice
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Avatar universal
It's difficult to watch this unfold.  The physical pain from the surgery subsides but the mental pain escalates out of control.  "Why me? What did I do to deserve this?  Why did my GP tell me it was my gall bladder. when my belly was distended?  If they caught it then, I'd be able to beat this."

The hospital and nurses are coldly efficient.  They take care of the physical and ignore the mental.  It seems most of the resources at the cancer center don't cross into the acute care hospital.  We are shaking the tree and some things are starting to fall but you shouldn't have to ask.  It's very frustrating.  I can't imagine how anyone could deal without family advocates looking out for them.
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Avatar universal
Hi Ray,
My mom started chemo 2-3 weeks after surgery, but she had to have chemo even before the surgery...so  not sure if that impacted her time to start backup. My understanding is that the doctor will usually start it as soon as the patient has recovered/healed enough to start. With regard to the ascites, depending on the drug, it takes at least 2 cycles before the chemo starts to reduce it.  She was on taxol and carborplatinum.  That did get rid of all the ascites.  She could not get chemo via intraperitoneal , but gets it thru an IV.  Diet is very important as Terry said, of course for overall energy and the nurses told my Mom to make sure she gets plenty of protein during her chemo treatments.  Even if she doesnt feel like eating, they wanted her to sip protein shakes (Carnation Instant Breakfast (sometimes with Icecream))  A lack of protein will cause swelling.  Also, it is important to drink alot of water.  If your sister takes supplements, you should just let the Dr know which ones. They also gave my mom B-1 and B-6 to help with the symptoms of neuropathy from her treatment.  With regard to what we have learned,  many say a positive outlook and optimism really assist with the healing.  I do agree with that but also know there are times that we can not always be that way.  You will just need to let your sister go through the cycle of emotions but try to be positive and encouraging.  Excercise (which the Dr did recommend), even just walking around in the house, really helped my Mom. Both mentally and physically. She eventually worked up to taking walks outside.  Also, someone needs to be an advocate for your sister with the doctors and hospitals.  She knows her body and if something isnt right, tell the Drs.  Depending on how she is feeling, she may need someone there to help with questions, etc.  Our Dr and Hospitals are great, but we still need to monitor the meds closely and ask lots of questions.  I hope she recovers from surgery quickly and best wishes.  Your an awesome brother for taking such an interest and learning everything you can to help! Janice
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523728 tn?1264621521
Chemo usually starts when the patient has fully recovered from surgery, within about 5 or 6 weeks.  I did IV, many others here were able to tolerate IP chemo.  My ascites went away after the second treatment.  I am now experiencing recurrence and believe it is building up agaiin altho it did not show on CT scan.  
As far as wisdom I have gained, I have definitely learned to slow my pace and appreciate the small things which sounds trite but it is very true.
Best wishes to your sister,
Sharon
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Avatar universal
Thank you for the comments. It's been helpful.

I have some specific questions.  I hope this is not too detailed for this forum.  If it is, please let me know.

How long post surgery did you start chemo?
Were you able to do intraperitoneal or IV?
Is ascites fluid buildup a constant problem or does surgery/chemo help?
Based upon your experiences, what do you know now that you wish you knew when you started that might help my sister deal with this?  Both medically and psychologically.

Thanks.  I'm sure I'll have more questions.

Ray
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454026 tn?1236881142
Hi,I am sorry to hear about your sister, you have gotten some really good advise from these wonderful women. But I will say that good nutrition is very important to help building a healthy immune system.I also take supplements.I will be saying prayers for her.
Hugs, Terry
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Avatar universal
Hi ,
I too, am sorry to hear of your sisters diagnosis and I hope she is recovering well from her surgery.  My mom is stage 4 and when she was diagnosed I spent hours googling Ovarian Cancer.  There are great sites with very helpful information, these are a couple I have gone to repeatedly:
cancer.gov
ovationsforthecure.org
www.mayoclinic.com/health/ovarian-cancer
Your sisters hospital may also have a library where they will research articles that you may not have access to otherwise.
Our local hospital has a support / educational program called Life With Cancer. This is an unbelievable group that supports anyone in the the community that is a patient or caregiver, family member, etc... they have oncology nurses that are extremely helpful in answering all those questions we think of after we see the doctor.  You may have something similar in your area as well.
Best wishes to your sister and your family.
Janice
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Avatar universal
Hi Raywell, so sorry about your sister's diagnosis, I am staged 4B.OVCA

She can of course start by speaking with her GYN/ONC Surgeon. He has a wealth of information to share with her including recommending an oncologist for her chemo treatments, and will also be a wealth of info. for your sister.

In the upper right side of this page, you'll find search MedHelp, write in anything you want to get information about, and click search.

it's good that you're starting to gather information, but remember that your sister has to heal from her surgery, and she's surely in shock from the diagnosis. Let her deal with this at her own pace, and take it one day at a time.

Come back any time for help, the ladies on this forum are unfortunately, so well  educated in OVCA.
Best of luck to your sister,
Jane
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