Starting chemo July 2014
Comments
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Jennliza - My scalp started feeling sunburned right before it started thinning (day14). Every day after that, the old droppage increased until I asked hubby to cut off some of the length. Finally, I had it shaved at the hospital beauty shop 3 weeks after my 1st infusion. It was actually a relief to be rid of the mess. The loose strands were tangling with the intact strands when I washed my hair. Also felt like I was encased in spider webs all the time.
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ugh. So turns out my TE inflammation is indeed a huge infection. I've just been admitted for 3-5 days of IV antibiotics and my chemo postponed for 2 weeks.
Soooooo bummed. Felt like the cart was moving forward, somehow feels like this is a huge setback.
Just whining.
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Blownaway - no deadening cream, she just swabed it down with some kind of cleanser, counted to 3 and told me to take a big deep breath and hold it. I actually thought there may have been some kind of numbing stuff in the cleanser, but she said no when I asked. I was scared to look while she was putting it in too, lol. I'm wimpy about that kinda stuff.
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Momtoirish: good for you, enjoy your book, or listen to music or take a nap. Another good web site is cancer.org that has good info on the side effects of chemo, precautions to take, questions to ask your Dr., etc. Also has cancer specific Discussion Forums that have good info
Big decision to make to drop chemo, make sure you've made an educated decision and not just reacting to the poor communication your providers have had with you - is your life worth that?
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In my mind, one reason for the port is to make this whole process easier, no reason for it to hurt when they access it, ask your doc for a prescription for the numbing cream, it has lidocaine in it, at home about an hour before you go for your chemo you put a good dab on the skin over the port, cover it with a square of plastic wrap lightly taped down to keep your clothes from rubbing it off - you won't feel a thing
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JoeysMommy, you look beautiful and your little boy is adorable.
Mainlady, I hope Wed goes smoothly for both of us. I'm on the same treatment as ElaineTherese... AC every other week x 4, Taxol and Herceptin every week x 12 weeks and 9 more months of Herceptin. Blah! Seems like this will never end and I haven't even started!
Kitkatmo, hope your feeling better and your pup, Nucky, is so cute!
Mumford, that is a great idea. I was in England when I was in college and would love to go back someday. My dream vacation for this winter is Hawaii. We can dream right?
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Mags, happy anniversary! Glad that you are getting some pain relief for your tummy. Shirley, good luck with your surgery. I had a hysterectomy in 2011 but they left my ovaries.
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I'm having a blast with the family at the beach. Today is day 12 and the first day I was able to keep my dinner in me!!!! I feel 100% and full if energy. I got a fohawk before coming to the beach cause I didn't want it to start falling out here and get emotional. I hate looking in the mirror and seeing my hair all gone. Has anyone else had little pimples on their scalp? I noticed several sore spots today.
And I think all of the critters are out of me, boy what a story I'll have to tell about those!
Hers a pic of my hair and of my baby Kiku
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Puffin2014 - it really didn't hurt much, maybe just a little more than getting blood drawn. I was surprised really. But I've been told I have a high pain threshold, so maybe thats some of it. If it had hurt bad, you better believe I would be asking for some kind of deadening.
Pinkninja - im so glad you are enjoying your vacation. The fur baby is cute! And I love the hair! Looking good.
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Awww thank you maidentiredofwaiting.. that was so sweet... you are beautiful as well...
Pinkninja you look fabulous with that hair style. I Love it... cute little pooch pic
Feeling 100% for 3 days now which is a huge relief from 4 days of the runs ... hoping I have minimal side effects from round 2 on Wednesday but from what I have read over and over the runs and gas pains seem like the norm
praying for all of you ladies 
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I eat really cold yogurt with a probiotic capsule emptied and stirred in it to keep a health flora going. The mouth wash I use is salt, baking soda, xylitol (a sweetner used in chewing gum in Europe to help prevent tooth decay) and warm water - after brushing my teeth with Arm & Hammer peroxide and baking soda toothpaste using a very very soft brush. Thrush started this time, (my tongue turned white) but all the mouth care seemed to fight it off. LTR (Last time round) I had terrible thrush and went with that compounded liquid prescription.Lots of new posts today.
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Raindew I'm sorry to her it but let's hope you can go home soon ;(
Pink ninja you look so stylish
cutie puppy ...0 -
Wow, Blownaway, you couldn't opt out if you decided you didn't want to put your body through torture? Just wow. Control freaks.
MomtoIrishQ, I like Puffin's suggestion, too. Even though you're not going to continue with chemo, you've had one treatment, and that alone can compromise your immune system, making it that much harder to fight the cancer. I can't imagine that your husband has seriously considered the implications for your long term survival.
You could always show up to dinner with a surgical mask on...
Kebab, welcome to our company, I added you to our list above. As you can see, we are an eclectic group, but we are always here for each other.
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Pinkninja, your fauxhawk rocks and your fur baby is so cute! Glad you are feeling better!
I had an echocardiogram today and it hurt like hell! Did anyone else have one of these? Not sure if it was because of the tissue expander or the fact they pressed so hard my ribs have bruises. Now I have sharp nerve pains around my scar that even 2 Percocet haven't got rid of. Does anyone know what meds help nerve pain?
CoyoteNV, thanks for the tips! I will be prepared to fend off thrush.
Thanks JoeysMommy!
I hope everyone has a good night.
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Mags, thanks. I need to start the probiotics- I'm already eating yogurt a couple of times a day. I just don't think anything could have withstood the massive amounts of antibiotics they poured through me when I was neutropenic, so of course the yeast was all "MUAHAHAH! Now it's OUR turn!".
I will definitely look into the food-grade peroxide tomorrow
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Raindew -- sorry to hear about your infection
. Hope you feel better soon.Thrush -- isn't there some basic antifungal med you can take to get rid of that? I forget; my kids had that when they were toddlers. Coyote's got some good home remedy ideas, though.
Pinkninja -- love the hair; glad to hear you're having fun! I'm supposed to be going to the beach today as well. I hope it goes well. My sons (who have autism) typically love the beach, but they don't really love family gatherings. Hopefully, I can keep them on the beach and out of the beach house, where there's an expectation that they "socialize."
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Maidentired, a drug called gabapentin targets nerve pain (knowledge acquired from a physiotherapist when I had a pinched nerve in my neck). Not sure what the American trade name would be...
Coyote, thank you for the mouth-care tips...I have a couple of jars in the washroom (one is a salt water mix and one is a baking soda water mix). I may look into the peroxide, too...
Sounds basic, but I'm keeping the lips moist with a really good lip balm (last time around I got those annoying cracks at the sides of my mouth) especially at bedtime. Look Good Feel Better gave me one made by Polysporin. It's fantastic and meant to be used at night...
Off to scratch my scalp...
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Mags - just got my date of first chemo. Starting August 13th. Hope you all sont mind if I stay on this board!?!?!
Maidentiredofwaiting....I thought I was the only one whose EKG hurt! I wanted to claw the ceiling and I clenched my teeth so the vulgarites I wanted to sceam at the tech wouldn't come out!
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My incision has gone from flesh colored and looking good to pink to blotchy red, going in to see physician's asst in half an hour. It's warm to the touch and tender, not running a fever and I feel good otherwise. Really hope it's not an infection.
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SlappySquirrel - I finally finished my first knitting project! Can't say that a lot of cursing didn't go into it, along with split stitches and achy fingers but, all in all, it can be used as a scalp covering device..... Next time, I will choose easier yarn to work with - this was super bulky and crinkly, probably not the best yarn for a beginner. I don't know how you are turning them out so fast - we'll have to change your name to NimbleFingers.
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JennKay2001 - What about Diflucan for the thrush?0 -
Puffin 2014 - My incision did the same thing and it was determined that I am allergic to surgical glue. The next two surgeries, they used steri-strips and no infection.
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Blownaway and Elaine- I got prescriptions for the thrush. I'm using a Nystatin rinse to supposedly get rid of it and a lidocaine/Benadryl rinse to ease the pain. It seems to be a tiny bit better today. I think if the nystatin doesn't work then diflucan is the next step.
I was mostly just lookin' for personal-experience advice on how to be more comfortable/prevent it from happening again. It's just so painful! I wasn't prepared to not be able to eat anything I have to chew because my mouth hurts so bad. Hopefully if I cram in enough yogurt (and probiotics, thanks for the tip, mags!) I can get my natural flora going again.
Coyote- I just saw your reply, not sure how I missed it before. That's pretty much what I'm doing now, although I haven't been able to brush my teeth for the last 36 hours because even the ultra super soft toothbrush feels like little razors on my gums
Pinkninja- you're adorable! I just love the hair!
Raindew- I'm so sorry to hear about your infection. Big hugs to you. It'll be over before you know it!
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RainDew: I don't know if you can get on line at the hospital, but if you can, know you have good wishes headed your way. The TE experience is tough enough without complications! I remember sitting in the PS exam room (waiting for my first fill ) a listening to a woman wail in the next room about the pain during a fill. Not saying it was comfortable, (mostly later in the day) but not quite that bad.In conversations about possible issues with TEs, PS said there could be infection issues, but that it would be a temporary setback. Disclosure: I didn't have a particularly bad experience. It sucks to be the one with the bad experience, but you were smart and followed up on it. I'm sure you are in good hands and I hope this will eventually be remembered as merely an annoyance.
I did have a weird infection at the site of my lumpectomy this time. My fever spiked to 101+ in the night. I had a several day daily 1.5 hour drive to the hospital for an IV antibiotic plus an oral antibiotic. I almost ended up in the hospital. It was resolved within 10 days.
I'll be thinking about you.
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Blownaway,
your hat looks great! I'm proud of you for sticking with your project and finishing it. I'm a little faster because I've been doing this a lot longer than you, and because crocheting is faster than knitting. Keep practicing and you'll speed up!
I got your thank you card and money. Thanks so much for paying it forward! You didn't have to do that, but it's appreciated.
Shirley
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Thanks Blownaway, I do have allergies so that makes sense. Rather than have me on 3 antibiotics (I'm still on the cipro and flagyl for the diverticuli flare up), they're going to stop the flagyl and start augmentin which will add some coverage for the skin infection. Hated the taste of the flagyl plus it was 3 times a day so don't mind getting rid of that one.
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Maidentiredofwaiting here's your purple brimmed hat. Hope to get it mailed out tomorrow!
Shirley
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Mumford here's your hat too! Going out tomorrow! Shirley
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hi ladies,
First, thanks SO MUCH for the nice thoughts. I was so bummed yesterday, I couldn't stop crying all afternoon - in the PS office, when I spoke to MO on the phone about delaying chemo, on the ward when admitted, in the procedure room where they aspirated the infected fluid. These people all think I am CRAZY.
It's just that...well, everything about cancer sucks. I feel like I've put my life on hold, including some major professional setbacks and thinking thru/accepting that DH and I will probably never have kids (I am 39, we weren't sure, but likely to be impossible now combining age and tx).
I can do all that, have cried my tears and gotten angry and found peace. What's thrown me utterly this time is that I thought I understood the path through all this. DO the really aggressive tx in hopes it never comes back. Have the BMX, do the chemo, 10 years tamox and ovarian suppression if they say so. Ok I got this. Positive outlook, going to get through it.
But I didn't account for something totally unexpected and how much it has thrown me off. So now I have 3-5 days in hospital (bored out of my mind...) for the IV antibiotics to work or else emergency surgery to remove TEs. Delayed chemo which scares me even tho MO says it's fine. And worst of all? I had a mental end date for all this crap - before my 40th birthday at the end of the year...which I am still hoping for, but less confident than I was.
Ok, totally whining now. I am sorry. Thanks for listening.
Ps - JennKay, let me know what works for thrush. Given the amount of antibiotics being thrown at me, I can see that one coming from a mile away!!!
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RainDew - it will all work out. Just keep picturing the end game - you with no cancer. Don't get bogged down in the everyday pain and awfulness. I know how it is, we all do. I just keep trying to think that this is the best thing for my body and once this year is over all will be well. We can get through this!!!
Here's how my first week of post chemo has gone:
Chemo day 1-3 for me included fatigue and queasiness. Took compazine and wasn't too bad. Day four I woke up with no queasiness. A better day. That was just to trick me into day 5 which was the worst heartburn i've ever had. Did a CVS run at 11pm after eating a box of Tums that didnt help all day. Mylanta was wonderful! Took 2 teaspoons and was able to sleep sitting up. Day 6 is today. My mouth is starting to feel funny, super sensitive and I'm looking at all your posts about thrush. I'm there, unfortunately. Thanks for all the great ideas to combat it!
SlappySquirrel thanks for the hat!!
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