Starting Chemo May 2015

rainnyc

Beautiful hat. It's the color contrast with the rose(?) that really makes it stand out!

MarlanaB

Love the hat! I bought one similar to that in all black--for the same reasons....too hot for a wig or scarves with the hot flashes! Ugh. Plus I had to match my work uniform so it was black or blue for me.

Shanann

I miss you all! I just want you to know that. I check the site every day for updates just because I want to know everyone is doing well! I know some of you have had setbacks (my heart hurts for you), and some of you are further ahead with treatments. Some are new. I have had my second treatment of Taxol, and am experiencing totally different SE's. I'm so bloated I've gained about 10 lbs, but I keep working, and figure I can work on getting it off once I'm done with my treatments. I am not suffering nausea, and I don't have heartburn. YEA! I am not sleeping for days at a time. YEA! However, I find I'm not sleeping from too much energy after the steroid, I guess. I got a treatment on Wednesday, and was awake all night that night- peeing a lot, The next day I went to work, and worked my butt off (physical labor), came home cleaned house, made dinner- and thought I'd crash, but was up every hour, peeing. I woke up Friday morning at 6 AM, and didn't start feeling tired until 2 ish that afternoon. TOTALLY different than with the AC. I can still taste my food. I know the Taxol is accumulative, so I wonder when, what and how long until SE's will begin hitting me with each treatment?

rainnyc

Shanann, Taxol SEs seem to be different for different people. For me, they were worse in the early weeks, peaking around 5-6. The thing that really bugged me was that water tasted like soap, and it was hard to taste my food. I craved salt and still do. Foot rashes come and go, and I eat carefully for a couple of days after the treatment--no spicy food. Steroid high peaking the day after, then crash the day after that. Benadryl really got to me, so they switched me to hydroxyzine. Looks like I'm going to 15 or so weeks, then switching to AC or surgery as the next step. Good luck to you!

surprisedat65

Bitch, bitch, bitch—that's all I've felt like doing, so I haven't been posting, but, of course, I'm still at it!

Last A/C was June 30, at which time it was decided that I needed a transfusion because I told them I had been doing little except sleep, often more than half the day. Unfortunately the person who set it up with the hospital didn't check it out with my insurance first, so the hospital told me not to come. When I next showed up for my first Taxol I was told that tho' my hemoglobin was still equally low they'd wait till the next week to decide if I should have the transfusion.This week I was told it was my iron (which it hadn't been previously—I had been specifically told that my iron studies were fine) and I've been put on something which I have to pick up today. So, no transfusion, I guess.

For weeks now I have continued to sleep a lot, and I am grateful I have a retired lifestyle to have been able to do so. Tho' I'd hoped my tastebud problem would have subsided by now, no such luck. My poor husband has been going nuts trying to find something to cook for me that I can actually eat and enjoy, but it has resulted in a lot of wasted food. I can get breakfast down, but everything else tastes like drek. Fortunately I find vanilla Ensure palatable. Have lost 15 lbs. since this adventure began, the only good thing I have to say about it.

Got the tingling in my fingertips so have been put on Gabapentin. No sign of new hair growth yet. Because my hair is so fine I didn't have the discomfort that many of you reported as the hair was coming out from the A/C, so I didn't bother to have it shaved. This enabled me to keep some of it, enough that I actually have a little wisp of bangs visible when I wear my fedora which I have festooned with buttons that say things like, "Stronger than cancer," and "My oncologist does my hair," which always gets a laugh. Unfortunately, all that's left of my hair is white, so I have to wonder if I'm going to be solid gray for good when it grows back.

9 more weeks of Taxol (plenty of time for new and exciting SEs to pop up), then 7 weeks of radiation. Blah! But I'm still kickin', so that's enough bitchin' for now.

rosesrx

I am still here too. 5 of 6 TCH this Wednesday . I have been lurking on other boards as well. Managing s/e best I can. Eyes have gotten considerably worse so will be switching to new glasses. On abx for sinus infection..good news it's not an abscessed tooth but the pain has me taking pain meds (left over from surgery) nightly. See MO on Monday.

My Mom passed away July 28th. Had memorial service today interred her cremens. Had grandsons incharge of music. Let It Be-Beatles, It Is Well-Jars of Clay, Tears in Heaven-Eric Clapton, Blessed Be Your Name-Matt Redman. We shared memories, scripture graveside sitting in a circle. It was lovely, then out to eat and more visiting. Very low key but uplifting at the same time. More family coming in Labor Day wknd but that will be to celebrate last Chemo on September 2nd. All the stress has drained me.

I call days 12-21 my honeymoon period and get stuff done as able. I truly don't sweat the small stuff. I admire those who are able to run after their kids and those who walk and run. The spirit is willing but the flesh is weak. Taste buds and appetite come and go. Carbs are still my go to. I stick with familiar things that I know should taste good and just eat. Weight is the same-thankyou steroids. Drink an occasional chocolate Boost to get protein .

counseling has beena God send along with venting here onthe boards plus a few pm's. Housemate has been keeping up with mowing and yardwork, cats and housework. Wish I could help you with the Taxol s/e. Thanks to the cold mits and slippers, nails an neuropathy have not been an issue. Did not keep ice in my mouth last time as much and had a couple of sores and no taster for 5 days. With this toothache I may not be able to this week.

surprisedat65

rosesrx:

So sorry you've lost your mom. There's never a good time for such a thing but to have to deal with your sorrow, your SEs and a toothache simultaneously seems too cruel. Here's hoping the near future brings much better health your way.

rosesrx

Thank you surprisedat, really trying not to go to "crazy-town". ONJ anyone? Must stop…

CatsRus

rosesrx, so sorry about your mom. A lost mine in January just before I was diagnosed. As Surprisedat65 said, there's no good time. Hold your good memories tight and be well! Take care

Shanann

So sorry that you lost your mama! This is the worst possible time of your life to have to deal with that kinda loss/stress. A BIG CYBER HUG!! My parents are up there in age, and the thought of loosing one of them at this time has crossed my mind. Again, I am so sorry.

crs003

I started the first of four DD AC treatments on 8/4 and my reactions have been much more severe than with Taxol. Day three I crashed and the uncontrollable nausea began. Both of my anti-nausea pills weren't doing a thing. I started having heart palpitations and feeling very weak. I went back in, and they said it was from dehydration. Water made me nauseous. They gave me some iv fluids and some anti-nausea fluids and that worked for two days, then I went back to the constant nausea and extreme weakness. I have enough energy to get from the bed to the kitchen for a drink, and after sleeping most of the day, have energy to be on the computer. Last night I was curled up against the couch with terrible nausea. I almost wish I would just throw up, but I'm afraid it would be hard to stop. Is this normal for AC? I am otherwise healthy 36 year old who is very active, but it feels like something sucked the life force from me.

rosesrx

crs, it isn't uncommon to go back for fluid several days in a row even on the weekends. MO along with you will find a combo of anti-nausea meds as well as adjusting the doses of chemo, something you probably don't even want think about next round.

Call and call again. Someone else will have to give their experience with DD AC.

Sorry for your misery.

CatsRus

just venting.... And nothing to do with chemo.... I had a bone density test last week because I just started Femara. I got a message Friday to call my PCP's office, which I just did and they told me my doctor will call me back when she's free. My stomach is doing loops and I feel like I did after first being diagnosed... I hate this!!!! I was never scared like this before BC.

Updated at 4:45 pm.... Doctor finally called. my bone density results were low...I have osteopenia. She wants me to start taking 500mg of calcium daily and 2000mg of Vitamin D. (I've been taking 1000 mg vitamin D since I finished chemo). Not great, but this I can handle...panic over!

rosesrx

Cats, It is so hard not to go to crazytown. I think I should get frequent flyer miles for those unnecessary trips, or atleast count as excercise for jumping to conclusions.

Sorry about the osterpenia, keep up with that calcium.. I take to chewing tums when I get stressed out. Magnesium helps if you find that calcium constipates.

CatsRus

Thanks rosesrx, luckily I didn't panic all weekend, my DH thought it was a receptionist who called on Friday (it was actually my PCP) and I thought it was just to change an appointment I have for later this year. I think my PCP is pregnant. Definitely agree on the FF miles and exercise.... that made me smile! Hope you are doing okay?

MarlanaB

Roses--sorry for your loss. I know you wrote last month about how tired you were staying with her so I hope you can at least finally get some rest.

Cats--I hear ya on the panic. I was constantly self-checking my breast before BC and I'm even worse now. Since I have fibroid cysts, ones that have been there for a long time are still throwing me into a panic. I started having to keep a journal just for my cysts!

JillyB

Just dropping in from July 2015 chemo page. Just have a question for you guys. I received a call from the PA yesterday stating I have high liver counts. They cancelled my 3rd treatment tomorrow and getting labs done. Have any of you gone through this? What questions should I ask? Anything to worry about? Thanks for your advice.

MarlanaB

Jilly -- check out this link:

http://news.cancerconnect.com/liver-damage-hepatot...

Shanann

I'm getting ready to go in for Taxol #3, and that brings me down to single digits (9- left). I have been eating chicken livers to keep my iron up, and taking B-complex and Vitamin D-3. Feeling pretty good so far. My brother asked me to walk in the Dog Park with him after work, so yesterday I got in a few miles. I was sweating profusely, because I can't handle the heat with the chemicals in my system, but I did it. I hope to walk every day. I got to walk with my brother, my daughter in law and my little grandson, as well as with my fiance and dog!

StefLove

jillyb, i have high liver counts too and my MO hasn't seemed TOO worried about it yet, just that we'll keep an eye on it and that if it doesn't go down AFTER taxol is over then we'll move forward with seeing specialists/test/etc. I've also had two blood transfusions since starting taxol though, which also elevates liver numbers some times. My bilirubin was 1.4 last week and AST and ART (?? I'm pretty sure that's wrong) were both over the normal range as well.

So I haven't been around the past week or so, just kinda doing my own thing and was in a funk lately about my hair. Cold capping doesn't seem to be working as well for me as it does for many others that are capping so I'm debating to just grab the clippers and give up. Friends and family are urging me to keep with it though to at least try saving the little hair I have left on my head! Taxol #6 on Friday. Definitely thankful my SE haven't been too crazy. I'm only really constipated when I get the carboplatin every three weeks. I defnitiely don't sleep the night of treatment. Luckily it's Fridays so staying up until 4am watching Netflix isn't so bad. My taste buds are decent so no complaints there. In between my big toe and my 2nd toe on one foot seems numb at night but I can't tell if it was poorly fitting shoes a few days ago or chemo. I'll bring it up on Friday!

Hope everyone is doing well!

tjh

Expander exchange is done, port comes out tomorrow before I leave the hospital. I feel good....almost normal.

Shanann

YEA for you, TJH!!! Port out!! I can't wait. I have nine more treatments/weeks to go before I get mine out.

karabesque

crs- I did AC first and now I am doing Taxol. AC, in my experience, was 20x harder than Taxol. The constant icky belly was a SE for me, too. I found that if I drank water and I know that's hard to do(lemon is essential) and not let my belly get empty, it was better. Ensure and pedialyte were suggested to me but I just managed. One week all I ate was ice cream and watermelon.

I also stated to feel better around day 10. So, about 3 good days before I had to do it all over again. The good thing about AC is it's only four treatments. Zofran and lorazapam are my friends. Good Luck and remember, this too shall pass.

karabesque

Totally random observation: My head and ears get so dirty without hair! I can not even go outside and I feel like there is a film of filth. Does our hair really absorb and protect us from all of that dirt? I live in the desert but still, my ears have never been so dirty. I wonder if I will think about my hair being dirty all of the time when it grows back?

Just sayin'

Shanann

Karabesque- Hope I spelled that right- another SE on AC has been a loss of vision; other than that, I have experienced at the same SE's as you! I was apologizing to the nurse, when she took my temperature in my ear, for it being so dirty. I didn't make the connection, but I am constantly cleaning out my ears. Never had that problem before. And, my nose is so sore without nostril hair. UGH

StefLove

Haha, I'll second the nose hair thing! My nose felt so weird and got gross without nose hair! Picking it (hey...I had to get that crap out of there!) felt so awkward.

Magnolia83

Hi Gals!

Been MIA for a bit, just working/doing my chemo thing/hosting family in town!

crs003, I did DD A/C and yes, it's a beast. Definitely talk to your doc about your nausea and SE's!! There are many different combinations of anti-nausea drugs they can give you, and sometimes it takes a few tries before you find something that works for you. I also had the "yuck fluids" problem during AC, I would feel "full" after like 2 sips of liquid. I found eating soups helped to get in my liquids, as well as fruit (particularly watermelon and pineapple, as they are juicy and I felt safer eating something with a removable rind). Also experiment with fluids...plain water is still blech to me, but sparkling water with lime is my jam I think it's the bubbles?). Lemonade also tastes pretty good. Try different things until you find something you can "stomach" a little easier and you will find yourself drinking more. Gatorade or other electrolyte drinks might help. I found that during DD A/C, I'd feel super crappy for the first week, then I'd start to feel better each day the second week. So try to make it through that first week and see how you feel!

LOL about the nose hair stuff...I have found that having no nose hair is definitely one of the oddest things of this whole experience. My nose just feels weird all the time, and when I have a runny nose it's like a faucet..there's nothing there to slow it down!

I am having the worst tooth sensitivity with extreme temperatures...hot stuff like coffee hurts, and last night I could barely take a bite of ice cream, it was sooo cold on my teeth! Might have to try toothpaste for sensitive teeth. Sheesh!

OK, off to Taxol #6 today!

rosesrx

Ended up at the dentist last Friday for what I thought was an abscesse tooth, nope just a lovely sinus infection. Finally eased by Tuesday. Yep I am doing the granny thing with kleenex in every pocket an up my sleeve. Always nearby. Can count on bloody nose days 10-19.

Great job on the walking. I manage about 1500 steps a day probably double that since I dont carry my phone with me while at work, with 2 flights of stairs.

#5 of 6 down + 2 weekly herceptin the every 3 weeks thru May then I can be deported. Echo on the 20th and scans in september along with starting AI.

MarlanaB

Karabesque--I also had one week where I mostly ate ice cream and peaches. As for the dirt on the head, the hair tends to disperse oils so it makes sense. I also find more sweat pouring off of me than usual.

I didn't even think about the nose hair--I know I've been more gunked up than usual so using my saline solution more and a borderline sinus infection. My nose bled a lot days 3-6 and I still get a little blood if I blow too forcefully. I get sinus infections so much that if my teeth start hurting, I automatically think sinus infection and not tooth infection. I finally bought one of those nose steamers a few months ago and it seems to help sooth my sinus issues.

rainnyc

Karabesque, I think you're right about the hair. Or lack thereof. I've been wearing a wig, and when I wash it in the sink--every couple of weeks or so--the gunk that floats off it is amazing. I've been keeping it on a styrofoam wig stand at night, and that has turned completely brown. It's just we don't notice the dirt when the hair is attached to our heads and we wash it off in the shower every morning!

Hope you're doing okay with SEs.