Ohio Chemo Sisters

Diane, good luck with surgery Monday, I hope it is UNEVENTFUL!

So I have been "de-ported", or as I told my son, I had the face-hugger yanked out of my chest!  (Remember the Alien movies?)  It looks and feels like I took a fastball to the chest, but it will heal quickly and I am glad to have it out. 

Roadwarrior, my first infusion sucked too.  Every one was different.  The time will go faster than you think.  Godspeed to you. 

Ihatemyboobs - congrats on being done with chemo, I am doin' the happy dance right now for you!  You feel like you cleared the last hurdle in a race.  In a month or so you will get rads out of the way, and keep moving forward.

I found out my oldest sister (the 33 year BC survivor) IS BRCA1+.  I still do not know the status of her other 2 daughters - the one that passed 5 years ago was BRCA1+.  I really dodged a bullet, drew the long straw, on the BRCA thing.  Wow. 

Well I am enjoying this cooler weather.  Ladies, shine on!

Debbie

Thought I'd share this information with the Ohio ladies. I just returned from Elegant Essentials in Medina and I am so happy my doc reffered me there. They carry a lot of BC stuff like hats, scarves, etc., but they specialize in fitting prostethic breasts - I currently only have 1 expander in so a bit lopsided. Before I even came in, they got a prescription from my doctor, verified my insurance and spent 1 on 1 time fitting me. I walked out with 4 gorgeous bras and a prospethic - and barely paid anything out of pocket. Couldn't be happier

Roadwarrior - there is also a place at Mercy Medical Center in the Cancer Center called Mercy Boutique. Very nice facility, easy to find, extremely helpful. I actually liked the compression sleeves/measuring from Mercy better than Elegant Essentials. It is much closer to home, I just didn't know it was there.

Like Elegant Esssentials, they carry a full store of items. Either place is wonderful. Finding them was the challenge

Ohio4Me - yes, I asked my onco and she said there's no actual evidecene that it works, but she's been hearing anecdotal evidence from patients. She doesn't seem any harm in it, so I'll give it a try. 

Has anyone had a super red face after chemo? And no, no fever 

Didn't have a red face. Not sure what that might be. I had two of same chemos + Taxotere. Never had a red face.

Did they tell you about mouth wash? I used an non-alchol mouthwash a lot - mininal 4-5 times daily to 'prevent' mouth sores. Never got sores. Either the mouthwash worked or that SE wasn't intended for me.

Also lots of water - no less than 8 but usually 12 glasses daily. And lots of protein. I ate 90 grams of protein daily, sometimes I had to force feed but I got my water and protein in above all else. Never had issues with bloodwork dropping too low. MO and nurses were always pleased with my labs (me too!).

Did you get a prescription for the nausea? I took Compazine chemo day and every 8 hours thereafter for 4-5 days - never got sick. Also took Ativan since the anticipation of SE's made me crazy. Those two pills sure helped chemo week go more smoothly. My sisters (both nurses) also had me taking stool softeners daily during chemo week. I learned that lesson after first treatment. I added Benefiber to my morning Malt-O-Meal every day., also.

I knew SE's were coming, I was just determined to control the ones I could.

Roadwarrior ...

I agree with ihatemyboobs, chemo was worse than any of the surgery, radiation, etc.  My chemo cocktail was same as Ohio4me, 6 rounds, every 3 weeks, of TAC (taxotere, adriamycin, cytoxen).  Nasty.  You get through it, one day at a time. 

NAUSEA ... I was on Decadron (steroid) 2x a day the day before, the day of and the day after chemo.  Made my face round as the moon, but boy did it give me energy!  Chemo day was a high-energy day!  I also took Zofran the day of and a couple days after, and they put both of those in my infusion bag too, along with a couple other things for nausea (the kitchen sink theory, I guess).  The Zofran acts slower, and sends a signal to your brain and tells it not to puke (seriously) but it does not work for morning sickness.  The other nausea medicine I had available to me was Phenergan - it was fast acting and would also make me sleep, which was really nice.  The only time I ever barfed, really, was if I forgot not to scrub my tongue when I was brushing my teeth and I would accidentally trigger my gag reflex and puke - LOL!

MOUTH SORES ... the first round of chemo burned the inside of my mouth awful.  It also put me in the hospital (long story).  Chemos 2-6 were reduced in dosage by 20%.  After that my mouth tasted like crap but I did not have blisters. 

SORE MUSCLES & NEUROPATHY... my leg pain lasted all the way through and 2 months beyond radiation.  I still have joint pain in my knees and ankles, but it is steadily improving.   Neuropathy in my feet from chemo did not begin until about 6 weeks after my last chemo.  It is almost gone (my last chemo was 12/27/11).  I luckily did not have it in my hands.  Once I finally got enough energy to start walking again, it accelerated the reduction in leg issues. 

PAIN RELIEF ... I have a high tolerance to pain meds so Aleve and Ibuprofen didn't make a dent.  Vicodin does not like me (nausea and constipation).  After a couple trials we ended up with percocet.  It worked great and did not make me sicker.  Don't be afraid to take the pain meds.  Make yourself comfortable.  Better living thru pharmaceuticals!  It's the only time in your life they will pretty much give you what you want. 

FOOD & DRINK ... for me it was NOTHING carbonated to drink, and no spicy or fried foods.  No ginger ale.  No beer, no club soda.  No PEPSI, even with pizza!  And nothing alcoholic, it would turn my stomach as soon as it splashed down.  I really did well with fruit flavored gator aid, next best thing to an IV bag.  Do not get dehydrated, I let that happen once and did not recognize the signs.  My MO taught me about the gator aid.  My go-to foods were PB&J, and Bob Evans individual servings of mac & cheese, and mashed potatoes.  Bland, tasty, tolerated well in a sore mouth, and just the right amount.  I did pretty well with salads as long as there was nothing greasy in them.  I CRAVED AND DESPERATELY MISSED Chipotle, but could tolerate nothing spicy.  I love to eat, so it was like being in food prison.  On a brighter side, my weight remained constant at 150 throughout the entire process, and since finishing radiation and getting back to walking I have lost 5 lbs. 

I hope this helps.  Everybody is different.  I called chemo 5 months of walking death, but I kept looking at the light at the end of the tunnel.  Keep your eye on the prize, girl friend!

(((HUGS))))!!

Debbie

Roadwarrior - double check whether Biotene has alcohol. Alcohol will add to dryness so non-alcohol containing mouthwash is a good choice. I think Crest is was what I used.

I never had joint pain from the chemo. The Neulasta SE is joint pain but I took Claritin for a week and never had pain from that injection either.

For that first day - ask for Ativan. It helps with the anxiety of anticipated SE's. Every eight hours for 2-3 days is just fine if needed. Take what you need to make the ride easier.

I found Mexican and Chinese food to be my favorites during chemo! Unusual I guess. Sweets did not taste good at all. Pasta only with tomato sauce - chili was good. It's just trial and error to find what works for you.

Lots of good wishes coming your way - one down.

Ohio4me, I go to Mercy Well Fit, corner of Whipple & Dressler.  Awesome team, and a little time in the therapy pool is great.

Ivylynn - good luck and it'll be over before you know it. I go in for my 2nd treatment tomorrow

Thanks for the welcome.  My first round of chemo was yesterday and was really not that bad.THe benadyl injection pretty much knocked me out.  The nurses were really awesome.  Today I'm in a total fog and feel like I'm having an out of body experience.  Scared of the Neulasta shot today, but took Claritan last night.

Hi Lady Buckeyes, I have an appointment Tuesday to talk to a surgeon for my port and they want to start chemo the week of Aug 27,2012.

hi gals! haven't checked in for awhile- i've had comp issues like nuts from home and at work my time on the net is limited so....

finished my T/C and have had my RADS simulation- just waiting for my RO to work out my plan..should start either end of this week or sometime next-just want it done!

my hair is finally starting to come back tho very sparse on top...eyelashes are almost visible! brows are another subject! had one toe nail that tried to lift-didn't get far but i am watching it for infection etc! i'm still wearing my wig and quite frankly am just plain ol tired of it but not near enuff top head hair to go topless!

my allergies have been awful- and my PCP fought with me that A)since i am getting older they should be decreasing and chemo should have knocke dthem out! well- teh allergy specialist that he grudgingly referred me to agrees with me that the chemo (2 rounds totalling 20 weeks) is probly partly to blame and once it is finally detoxed i should see relief. meantime she ordered blood work and we're medicating with extra allegra!

i don't really remember when the last time was i wrote- we did get moved and i have that wonderful screened in back porch! finally getting to enjoy it on cooler mornings and evenings!i need to find the perfect porch furniture tho-and price IS an object!

work is good and i am still loving the job! i qualified for my own health ins (first time since 2007!!!!!!!) a month ago and i feel so good about me!

BIL in wisconsin has been dx with Stage IV pancreatic cancer -his liver is involved -and his non aggressive chemo was trying to kill him so they have discontinued..i think well go visit over labor day while he is healthy enough to sit with his brother (my ex/live in).

RED FACE: i had that for the few days i was on decadron with my A/C. it would go away after....

good to catch up with all of you!so jealous of the canton gals for your coffee date! wish there was someone out near me!

well- enjoy the sunday and the end of summer stuff as fall is quickly approaching!

Representing Columbus, Ohio here!!! I actually live in Reynoldsburg, a suburb east of Columbus.



Kellogg, tonlee sent me a message to help me find this thread. Thank you so much tonlee.



I was diagnosed on July 27, 2012. Im on disability, so I do have Medicare. DH started a new job on August 1, so I won't have major medical again until October 1. I see the surgeon again tomorrow, and I'm hoping we can hold off on surgery until then.

Husband makes less than $12 per hour, and no children in the home, so I'm sure, I'm not eligible for Medicaid.

I was told, that since he went from one job straight to another, and was insured for 5 years, the gap wouldn't be long enough for a pre-existing clause.



Anything you can tell me would be appreciated.



Blessings

Paula

Kellogg's thank you for the info. My private message was actually from sewingnut. I misspoke. I went back and read it again, and I see now that tonlee is all about nutrition.



Sorry sewingnut.



I see the surgeon tomorrow. If he feels strongly that October is too long to wait, I'll take his advice. I figure they wouldn't schedule me for at least another week, which would only make October about 4 weeks out.



It's great to connect with other gals from Ohio.



Blessings

Paula



FIGHT LIKE A WARRIOR!!!