@mommacandy ,
I just saw your post. I realize you didn’t want to hear it, but you sound really good. How long will you have chemo? I do hope you can avoid the mouth sores.

Will you be taking time off work? Will someone be able to help care for you?

When they made the comment about losing hair in 2 weeks…were they saying that about starting chemo or that your illness would cause hair loss?

The genetic info is incredible. It had me wondering if I should get it, though I already know that my dad’s side has huge autoimmune issues. I don’t recall any cancers but one and that was my great grandfather who died in late 80s.

I hope you can be feeling better soon. Do you know what to expect with the chemo?

Regarding hair, my experience with carboplatin/paclitaxel was that it started falling out at the 2 week mark and was not presentable by about 4 weeks. I got it cut pretty short before starting chemo, but it still made a real mess (mostly while I was washing or combing it, but also hair all over the place.). I'd suggest leaving it until it starts falling out and then taking the clippers to it. As short as possible. That's what I did on second go round.

Hello @mommacandy !
I made sure I went to the dentist before my treatment began and he said he was so happy I did because most don't say anything and end up with mouth/teeth issues after treatment ends. He highly recommend biotene mouth rinse for dry mouth. I just used the generic brand. He also recommended xylimelts. You place them in your mouth and they stick to your gums or teeth. You can even sleep with them in. They dissolve over time and keep the moisture in your mouth. I was nervous the first time I used them at night but they worked. He also said what you already said which is to limit the acidic/citrus foods.

As far as your hair goes I think it's wise to get it cut short before you start losing it. The day before my appointment I lost a lot in the shower and I could just slightly pull and the hairs would come out. That made me ready to get it cut short. The lady who cut mine said never to shave it completely off because then you end up with ingrown hairs. I was fitted for a wig ahead of time so after she shaved me she put my wig on. I never had to announce to the world that I had cancer. The wig made me feel much more confident. I bought scarves and hats but only wore the hats when I worked on my yard so I wouldn't get my wig all sweaty. My eyebrows/eyelashes were the last to go. I bought a bunch of things for that time but they grew back so fast that I didn't have to draw eyebrows on but a few times! You've got this! Lots of people sending good vibes your way and praying for you!

Hello MommaCandy,
Your experience sounds very much like mine. I was not a Mayo Clinic patient at first. I started with a local doc in my hometown. Pelvic ultrasound showed no masses. My main cancer burden was in the omentum. First look surgery showed widespread cancer, like sesame seeds throughout my abdomen, the caking of the omentum, but no big tumors anywhere else. So I had 3 cycles of chemo, then surgery, then 3 more cycles of chemo. I, too, cut my hair very short before it fell out, and I think it was easier to handle that way. My chemo was carboplatin, paclitaxel, and Avastin. (This was 2 years ago.) They premedicated me with powerful anti-nausea meds before each cycle of chemo. I feel very fortunate that I had no nausea at all. The only side effects I had were hair loss and mild pins and needles in my fingers and toes.
After the first 3 cycles of chemo, I went for the definitive surgery. He only removed my tubes and ovaries. He did not remove my omentum, uterus, or appendix, like I expected.
I decided to go to Mayo Clinic for a second opinion. I fully expected them to say, “Your treatment was appropriate. We would have done the same thing.” But they didn’t.
The Mayo surgeon said, “Your surgery is what I would have done for an 85-year-old.” (I was 61.) “The surgery you had was BELOW STANDARD OF CARE.” 😳 The Mayo surgeon offered aggressive surgery (removing omentum, uterus, and appendix) plus HIPEC (heated intraperitoneal chemotherapy). I said, “Yes, please.” Afterward, I saw the local guy, and he said, “You could be cured!”
I was so stunned by that, I couldn’t think straight. I wish I had said, “The why didn’t YOU do all this?” I never saw him again. I’ve been with Mayo ever since.
I just wanted to share my story since yours sounds so similar to mine. I hope chemo goes smoothly for you. Before you have your definitive debulking surgery, I recommend asking what they plan to remove. (But if you are seeing a Mayo doctor, they are probably going to be very thorough!)
Turns out, I’m not cured. I am going through chemo again now for recurrence. Same chemo drugs, but worse side effects. Apparently, side effects are cumulative. After the first cycle, I had to be hospitalized for neutropenic fever. Got a bad mouth sore. Everything tasted like wet cardboard. Neuropathy worse. But no nausea, for which I am eternally grateful!
I hope your treatment goes well and that you feel well-cared for.
Take care,
—Laurie