Starting Chemo September 2015; join us!
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oh and I've started putting Chapstick up my nose cuz it's so dry I have a huge sore on 1 side. And of course with no nose hair it just runs out my face but it's still dry and uncomfortable at night.
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Ladies, here's the scoop on my hair.
One of the gals in another board experimented with her hair and waited for it to all fall out. I decided to do the same. I had my shoulder length hair cut to a chin length bob. I also bought a human hair wig at a wig store, just in case i'd need it sooner.My cut off point (no pun intended) would be fistfuls of hair in my hand.
Day 14, hair strands here and there.
Day 16, hair line visible balding. Wore caps.
Day 17-19 wow. Fistfuls when I brushed or ran my hand through my hair. Hair everywhere. (Life hack tip - wear a rubber glove to pick up hair). Strange thing is I was thinning evenly. I still had hair all over, but really balding on top. I just looked like those dolls that had little hair. Haha. But i did have to cover up with my caps.
Day 20- day before chemo 2. I did not want to be bothered with hair falling while dealing with se's. So I told hubby to shave. Starting wih scissors, he cut the back. I cut the front and stopped cutting above my ears and had hubby put away the shave. In front it looked like I had really tight pony tail. Hubby even said it looks neater. My head instantly felt better too. I guess it was all the weight of the hair pulling down. have five inch bangs parted in the middle. I can still see my own hair. I wear my cap and see my own hair line. This may not make sense to some but i realized is gradual loss makes it easier for me.
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Milkshakes have been one of the few things I have been able to manage on the really bad days. I hope I can have some sort of real food tonight. I've lost weight but it's been a gradual thing over the past 3 months or so.
And on a whim, just went and had my head shaved this afternoon since I was feeling semi-human. I'm sick of picking all my loose hair out of the caps & hats. Haven't had the nerve to look at myself yet other than a brief glance when it was done. Gonna be weird! Ordered a couple of warm hats today.
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DLcygnet,
I used a baking soda and water mix to gargle with four the mouth issues. It took a couple days but i did get a lot of relief. I used about a teaspoon of baking soda in a cup of warm water. I gargled FREQUENTLY throughout the day.
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I've been controlling the nausea well with a regimen of the meds I was given. But I'm realizing that's what's keeping me on my knees is the diarrhea/gas pains.
I think I need a regimen to better manage that.I've been taking liquid Imodium sporadically...it's not doing the trick. Maybe a pill version that I can take on a schedule? This has becomea terrible roller coaster ride.
Are you all taking anything better to control the diarrhea?
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i refused to take immodium because the constipation was more painful. I just rode it out for a couple days until it got better. Maybe you're sensitive to immodium. Switch to kaopectate or something else. Or
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Ok I couldn't take the itching and the shedding. Jimmy shaved my head. It's awful. I look terrible and old and fat. Fat bald with chemo acne. Oi what a thing to live through.
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I can't believe this. I thought I was doing pretty well, got through the rough part and just have itchy hands and some blurred vision. I called the MO just to reassure myself since I've read that these SE's are not uncommon and they left a message that he wants a head CT. I don't have time this week! Is anyone else having these symptoms? I'm 12 days out and just starting to feel human again.
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Hi everyone..just popping in...I finished up AC in June, and have 3 more Taxol to go. I'm also on Herceptin til July. I know how scary and crappy this all is.... it the pits.. but I have to say its been more manageable than I thought it would be. It seems like it will never end,..... but I'm getting close now, and you ladies will get there too!!
I just wanted to pass on a tip I picked up here someplace.....I had my hair buzzed to a very short stubble 2 weeks after starting AC. About a week or so later my head began to itch and get sore, and I used a sticky lint roller brush to remove the loose stubble...it helped alot!! I used almost a whole roller but it was worth it!
Also, if you are having SE that aren't responding well to what you're taking... talk to your MO. At different times, my MO increased my Zofran, and gave me an RX for diarrhea.
Good luck ladies..hang in there!!!
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I'm on day 5 of my second round, so day 19 from the start. My MO nurse told me that it would take off on day 16, but I'm only seeing it as of late this afternoon. I'd buzzed it on day 9 as I didn't want to wait until clumps fell out like a nuclear holocaust survivor. I knew that would be worse. ☹ The stubble is starting to come off on my hands when I rub it a bit now, so I suppose it's finally my turn. But at least it's not painful like it was starting to get.
mom2boo... Keep us posted, but I'm thinking they're just being overly cautious. That's a good thing!
And we got a letter from the insurance that they won't cover the Neulasta. Apparently you have to jump through multiple hoops and prove the cheap stuff doesn't work. Nice--after I've already gotten my second injection. And with two children who have been very sick with strep and bronchitis , I think it just proved its value! Is it cheaper for me to be hospitalized?!
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Sorry Lindy the scarves were at WalMart-- it was in my head, didn't make it to the keyboard.
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Carolina - the insurance news is horrible. I think it is thousands of dollars!!!!! I guess you have to fight this but who has the energy. Keep us posted. I would hope your doctor's billing dept can help. Maybe they have an insurance advocate? (Sounds like a person that would be helpful! Is there such a person?)
Mom2boo - I am sure it's just precautionary measures. If there is anything I can do, let me know. I'm not that far away! I taught at Fireside in PV for the past three years and know north phx well. Hang in there! Will send positive vibes your way.
I'm home from first infusion and had a burger and shake on way home. I have a slight head thing - not really an ache though but nothing else.Gonna start the gargling. I also got Biotene mouthwash - anyone using that?
Will be taking more activan soon just to be safe.
Glad there's lots on TV this week!! We have an excuse to sit and watch!!
More HUGS to ALL!
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Well ladies, I won't be starting chemo in Sept. After much thought, I've decided to be a cash pt with the MO here in one of Washington Hospital's building. Vandana Sharma MD is who I wanted to go with to start as everyone and their mother rave about her, but her group doesn't take my insurance so I chose one who did in Berkeley (I live in Fremont CA) and have her write orders to WH infusion center. So at least I'd get infusion around the corner from me and just see her for fu visits. Turns out she doesn't have privileges at WH. Don't know how she thought she could do it when you aren't affiliated with the hospital in question. The infusion center where she is looks like the 70s that needs a deep clean. The room is a bed, like a hospital room. No thanks. The infusion center at WH you have what looks like a room in your home: recliner chair, tv, nice decor, view of a water fountain outside- much better. And you can order whatever lunch/snacks/drinks you want from the hospital menu for free! I already had the tour there last week and the staff there are awesome. Now that I think about it, since you can't tell which days will be good ones which will be bad, I'm relieved not to worry about if this day I have an appt will be a good or shitty one. It's quite the drive when you feel like shit, even if you use drivers for survivors.
I meet Sharma next Tues so soonest chemo would start for me is the full week of Oct. I'll still follow this thread of course and wish you all the best! xo
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There are so many places to get help with paying for stuff insurance does not covers. Ask the people at your cancer center, call the American Cancer Society, Google other places. My insurance didn't cover any genetic testing but my cancer center has a program and also the genetics lab has program. Call the people who make nuelasta. Maybe they have a program.
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Yeah talk to the people at the cancer center. The ones at mine automatically set me up with a Neulasta co-pay card so it's only $25 per treatment.
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Hi DL-
We just wanted to welcome you to our community here at BCO! We hope you find this community to he supportive as you make your way through treatment.
The Mods
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Artista, you are welcome here still with an October start date. Let us know when you have a new date. The WH facility does sound a lot nicer...
CarolinaAmy: While I am taking neuprogen, not neulasta, they do have a drug assistance program for whatever insurance doesn't cover. It is NOT income based, so no jumping through hoops to qualify (they asked me three questions). But I agree: your MO should be fighting for your insurance to cover it. Mine handled all the insurance stuff and waited till it was approved to schedule everything. Let the MO office know you need this help.
Octogirl
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Welcome to all the newbies. I feel a real sisterhood with all and especially with women with young kids (I have three, ages 1, 2, and 5). I am on day 18, hair is going, going, almost gone and I am dreading the next chemo cycle in a few days. Physically, I feel pretty awesome right now (which means close to normal). But anxiety is at a fever pitch with many negative thoughts about death and leaving my kids motherless. Sigh, it is a terrible journey.
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sailorgirl - small world - my DS is at Fireside and was there last year as well. I am using biotene and it seems to be working. I got the toothpaste and mouthwash. I swish after every time I eat and did not get mouth sore. I bought some systene eyedrops and that seems to help. I know they are being cautious but I thought the first step would be an opthamologist not a CT scan. Same goes for me, if you need something let me know!
Carolina Amy, definitely look into the co-pay card, my MO office signed me up for that as well. You should not be held financially responsible for something the MO should have asked for approval of. I would pursue this, it;s a pricey shot but well worth it.
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Sailorgirl, I started using Biotene right away but by day 6 was developing a sore mouth and throat. It only started getting better when I switched to baking soda rinse.
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I am using a baking soda and warm water rinse morning and evening...I had one small sore that went away almost immediately. Otherwise, no problems.
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Good morning, ladies. I'm off to my first infusion this morning. Not sure how I feel.
They told me I would have the Neulasta auto-injector in my arm. Did anyone have any problems with that? I just feel like that's another foreign body on me. The thought of walking around for 27 hours with a little needle in me makes me a little nervous. How to sleep with that thing and not bump or move it? Maybe I'm overthinking again.
On a positive note, the Look Good Feel Better class was wonderful. Great ladies running the program and lots of high end freebies. They were very informative and made us very comfortable. If you have one in your area check it out.
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fidget I had the neulesta auto injector on my stomach. The nurse said it can either go on the back of the arm or the stomach. She is said the stomach is sometimes easier to see and monitor the blinking green light. I found the stomach ok since she put it on the opposite side where I sleep. You don't feel the needle in you and it auto dispenses the medication 27 hours post chemo. The infusion is painless.
Glad the look good feel better class was wonderful. I plan on going next month.
Annie I feel ya with the bald & fat. I miss my hair. A lot.
CarolinaAmy so sorry about the insurance crap. That sucks. How awful that the insurance co informed you after the 2nd shot. And I also am having my stubble buzz thin with prickly hairs coming out a bit when I shower. I hope that the chemo drugs don't kill my fast thick hair growing gene. Maybe I will have hair growing by spring in March. Sigh.
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I've been smoothing my hair down and coming away with multiple strands..so here we go. Maybe I'm weird but I'm putting each handful into a bowl this morning to see how much actually comes out. This may help me make my decision to chop it off and stop denying the inevitable. I'm having trouble pulling the trigger here, finding all kinds of excuses to delay.
Second round on chemo is this Thursday so I'm sure my handfuls of strands will turn into fistfulls of clumps in no time. I'm waiting for my hat/back fringe combo to be ready for pick up any day now so I'll have something fast and easy to throw on my soon-to-be buzzed head.
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LindyC, I don't think you are being weird about the hair. I am in a similar boat, and I am also denying the inevitable. We started chemo on the same day (although different regimen). Still no big loss. A few hairs here and there, but I've always had that. However, my hair is very thick, which might hide bald spots. (?) It does look thin and limp, like I am having a really bad hair day. When I saw the MO last week he sad it would be gone by my next infusion (which is Monday) so....I keep waiting...I have an apt with my hairdresser to buzz it tonight but I am seriously thinking of canceling. If I can get another week out of it why not do so? I work full time and I'd love to have another week without the stares and looks of pity. (or at least looks that I imagine are full of pity). I have scarves and hats that I carry with me at all times but so far that is all I can bear to do. When I try on one of the 'cancer hats' I look ugly and fat, so I know that feeling.
Octogirl
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I'm the same. I bought these cute hats and have tons of scarves but when I put them on, all I see is a humongous face and nose, ugh!..the baseball hat look is better so I may clip off the top first and leave the back fringe a bit to get an extra week. Yes, sounds weird but its on my terms so in this sense, I win!
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Thinking of you with the first infusion, Sailorgirl: how did it go? Please keep us posted. Looks like there are a lot of us starting this week (HazelFrancis, Mommadigs, Cat Lover, glensea, Judi1952, Scotland.....): we are in your pockets and good luck for minimal SEs! Hope to hear form you soon!
Hugs, Octogirl
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Carolina - My onco told me that some (not all) insurance companies, because of the cost, will only cover the shots if your wbc is low. In other words the insurance companies will wait for the patient to crash first.:((
I guess it explains why some women on this board get shots automatically and some don't.
That being said maybe ask your onco for the before and after results of your first shots and see if they improved your counts, therefore justifying coverage.
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SouthernCharm..I'm with you. We'll have the "Riff Raff" from Rocky Horror Picture Show look going for us. Just hope the baseball hat doesn't blow off.
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Southerncharm- i feel the same way!!! Even when.the balding and thinning started for me, I was happy to still see my own hair and just cover with caps.
Do you still have long hair? You may want to cut the length (as recommended). Will make your hair look thicker and shorter hair falling off is less dramatic.
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