• willie's Avatar

    willie wrote on Vaccarob's wall

    These are some things that we have learned over the years:
    Dryness. Total body dryness. This was (is) a big issue on a daily basis for my wife when she had IV chemo and now as she is taking oral chemo. Here are some things that we have learned from a number of people over too long a time.
    BIOTENE This stuff is wonderful for her mouth. Get the rinse-and-spit bottle and the lozenges. Plus, they make a toothpaste! Goods stuff.
    RESTASIS This is a prescription from her ophthalmologist for her dry eyes.
    EYES: Also, we learned that it is OK to mix Restasis with Systeane Ultra drops and Systane Nighttime ointment. The 3 are working well against the dry eye.
    LANOLIN LOTIONS Put it on after a shower while you are still damp.
    SHEA BUTTER in chap stick.
    COCONUT OIL This is wonderful for sex. We started using it years ago during menopause---still works great. Use liberally.
    WATER Keep a bottle handy and drink it.
    LIQUID BANDAGE Pat gets cracked finger tips. Use this to allow them to heal.
    RUBBER GLOVES Get some elbow-length ones for washing dishes to keep your hands out of soap and water.
    NO SOAP Pat uses soap only on her arm pits and crotch. Everything else gets MOISTURIZING CLEANSERs.
    LOMA This is an after-shampoo rinse to help her hair, from Amazon. She tries to shampoo as little as possible, like twice a week.
    PROBIOTIC: The chemo is hard on her gut. The probiotic helps keep those microbiomes in there to aid digestion. Talk with your doc about it.

    It took us too long to learn this because this dryness is torture by increments. So save yourselves the aggravation and get ahead of the curve. Try some of these products and make life more pleasant.
    Compression stockings. Pat thought (for too long) that those ugly hospital or airplane stockings were the only thing out there. Then she started looking and found some very attractive ones, that work! Why put up with the swollen ankles if you don't have too? Buy yourself or your sweety some as a gift.

  • Carol-Charlie's Avatar

    Carol-Charlie wrote on Vaccarob's wall

    One more thing, I never had a relaps... Chemo was exhausting, but totally doable...

  • Carol-Charlie's Avatar

    Carol-Charlie wrote on Vaccarob's wall

    Welcome to our WhatNext Family... Sorry you had to look for us, but you've found the right spot. I was 62 when I heard the words... Stage IV Ovarian Cancer... Wow.... The first thing they did was to refer me to a Gynecologic Oncoligust Surgeon...(They were created just for us Ovarian Cancer patients) My referring doctor told me they were so new that I was getting one of three in the state of Minnesota. And we have U or M Medical School and of course, the Mayo Clinic.... You're lucky ... it's been 13 year and there are a quite a number of them out there. Mine did his exam, then referred me off to get many tests... Heart, lungs, (I'd had a hysterectomy at 45 - but when I'd asked back then, they said I was much too young to lose them, and they looked healthy).....(Just to let you know, the colonoscopy was almost a breeze) But glad they did them all. Then he scheduled my debulking surgery.... He said he wouldn't know for sure what stage I was till he was in there. Discovered it in January, he did the surgery Feb. 23, 2006. He woke me and told me what he'd removed, A 39 pound tumor, and both ovaries. Then he very carefully scraped all the cancer he could see from my intestines (he knew it hadn't grown in by the colonoscopy) my urethra, my fat pads... Wow.. Then He said. Stage IV prior to surgery. but he'd upgraded me to a IIIC... Wow.. Then I asked him how long I had. He answere slowly and his hand made a fist.... "six months" and he punched the door... I was still quite doped up, but I remember telling God I was terrified! - Immediately my fear was gone... I started being my logical self... I did the math... I'd die in August.. my kids wouldn't freeze at my funeral.... I then asked God to take my hand and lead me to where He wanted me to be. Here I am 13 years and six months later. He led me here to read your post just now and let you know you can beat this!!!! But please find a Gynecologic Oncologist Surgeon. Then do what he asks of you..... Mine told me it was my 'positive attitue' that helped get me through.... I'll pray that you have one close by.... As a follow up, a few years back, my regular doctor did an internal and we were chatting away.... "CAROL SHUT UP!!!!' My hand flew upward, and I felt the Lord's had holding mine... He said "Carol, I'm still here!" then my doctor said..." I'm sorry Carol, I did the biopsy and can see it's not cancer... I'm sorry for scaring you! I'll send it in, but I know... and it wasn't. God sent me the perfect doctor.. May He bless you and keep you!

  • kalindria's Avatar

    kalindria wrote on Vaccarob's wall

    Hi Vaccarob and welcome to WhatNext! I'm so very sorry to hear of your diagnosis but you've found a great place to ask questions, get information, and share experiences. We're the same age. Almost 6 years ago, I was diagnosed with stage 4 fallopian tube cancer and I've had a couple of relapses. I'm still getting chemo but feeling good. I'm just back from a short trip to California to play with my grandkids and see my one daughter's new home!

    Stage IV isn't a death sentence so please don't lose hope.

    Anyway, some time ago, I recorded a series of videos for WhatNext about my cancer journey. You may find them helpful. I've included a link at the end of this message should you wish to check them out.

    WhatNext.com is a great place for everyone, from the newly diagnosed to those of us who've been living with cancer for some time - friends and loved ones too! While you're here at WhatNext.com, check out the questions and experiences of other folks here. You can find people who've had the same cancer, surgeries, chemotherapy and experiences should you wish. It's often reassuring to know others have been through what you're facing and thrived. I also recommend the PINBOARD - there are often humorous or uplifting posts that can make your day. Definitely worth checking out.


    In the meantime, I'm here if you have any questions or want to chat.

  • macfightsback's Avatar

    macfightsback wrote on Vaccarob's wall

    Welcome Vaccarob,
    Finding out someone you care about has Stage IV Ovarian Cancer is overwhelming, shocking and frightening. I am glad you have joined us. I was diagnosed stage 3C in 2015. It has been a struggle but I can honestly say I have more good days than bad days. Sites like What Next are great sources of knowledge and support. I urge you to consider suggesting this site to your loved one. Since we all have screen names, you could both choose to remain anonymous and both be on this site. You will see all sorts of questions on this site and answers. You can pose your own question or gain info from other questions. Feel free to ask any questions. We are here for you.

  • Lynne-I-Am's Avatar

    Lynne-I-Am wrote on Vaccarob's wall

    Hi, welcome to the site. I am sorry your family/ friend has been diagnosed with ovarian cancer. I was 66 when I was diagnosed with later stage of ovarian cancer and had my “ oh no “ moment. It was very important to find a gynecologist oncologist to treat me. We found him in Sacramento, 2 1/2 hours from where we lived. There were none of these specialists in my small city. These doctors have the extra training and experience to treat ovarian cancer . The treatments are not easy, no treatments are when it comes to battling this disease, but they are DOABLE! It is so important to have strong family and friend support, my husband was my rock. Everything is unknown and scary and these are tough times but there is life when the treatments are over and she grows her hair back and regains her strength. As a caregiver make sure you take care of yourself too. My husband shared with his brother the things he couldn’t share with me at the time. You need an outlet. I was diagnosed in 2013 and I am still here. I have many friends who are living with stage III and stage IV ovarian cancer on maintenance therapy. I would like to refer you to a video by my friend kalindria who is very busy living her life with stage IV ovarian cancer and was diagnosed ,like me, in 2013. WhatNext was a lifeline for me when I was first diagnosed and has remained a great site for me to connect with other survivors. Everyone is here to help each other. Wishing you and your family/ friend better days ahead and successful treatments. I am here to talk anytime on my wall. Take care.