Chemo June 2010
Comments
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Workmother - try and get as much protien in you as you can. That is one of the things that we need to help us rebuild red blood cells. I have developed a strong need for peanut butter. Hang in there! You will get through this.
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sherry: how are u feeling today? u've had a tough go at this from the beginning!!
all: seems the hair loss thing is what we're all facing right now----& i have to agree, it's the absolute pits to know that something we are usually proud of that NO ONE can take away from us w/out our permission is now something that we have absolutely NO CONTROL over-----something wrong with that picture!
question: do any of you have a 'better potion' of hair product(s) for the hair loss process, then the bald scalp issue? i've heard some ladies actually get a few sores on the head while others have a rash.....but haven't seen anyone post if there's a 'best choice' for the scalp.....anyone????
to those who are facing their 2nd AC treatment this week, i'll be watching to see how you fare--mine will be next wednesday & i'm curious to see if i have the same wretched SE's from my 1st round.
deb
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Thank you twin mom jack will try it out!
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Hey Cheyanna:
I just noticed that your dx and mine are very similar - my tumor was larger but it seems there are very few ILC ER+/PR+ HER2- 's no the board. I know that chemo has been rough for you, Hang in there girl.
Liz
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dsa
I have chemo acne - and - I was just about to ask the rash question - my hand is up - I got it!!! My head is full of bumps and rash and so is my stomach. My first TC was last Thursday and my scalp is so itchy!! I have been taking Benadryl for the rash but it isn't helping the scalp. I am so afraid that if/when my hair falls out, my head will be truly disgusting. I am anxious for any help to keep me from looking like a giant zit.
I'm sure I'm not the first.
Liz
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Mybails and Dsa--> I heard someone mention awhile back that they use witch hazel on the pimples on their scalp. I've had some off and on tenderness, but that's it so far. I bought a 3 pc Nioxin kit and my hairdresser said to keep using all 3 products (cleanser, scalp conditioner and scalp treatment) even after I lose my hair. Thankfully he gave me a discount
Its what he uses on his thinning hair too.
Anybody else getting hiccups after AC? I've had them both rounds. Maybe its from all the liquids I have to drink. I only get them 1 day, but they are really annoying! They keep coming back and they hurt!
T
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I didn't get hiccups from treatment but in my early twenties I had really bad hiccups from indigestion a lot. At that time, chewing a teaspoon of sugar helped stop them. You might try that. And thanks for the witchhazel suggestion. I'll give it a try.
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Meliss
That's too bad! Well I know longer regimen is hard to deal with but better than ending up in the ER. I hope whatever you decide it works out better for you.
Lots of luck!
Di
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Okay, everyone. I have been struggling ALL day with this issue - no hair! In all honesty, it hasn't bothered me much until yesterday and it seemed that was all I could think about. I've only worn my wig once, and that was the day I got my hair buzzed and wore it home from my hairdresser. It's just been too hot here in OK. The few times I've been out of the house, I've just worn a ball cap and I wasn't bothered by that. But as I anticipate my trip to onc tomorrow, I find that I am stressing about being there with no hair (or my buzz cut). I put my wig on tonight to check it out since it's been almost two weeks since I've worn it or even seen it. And I HATED it! I think I must be headed for a melt down which is probably due because I haven't had one yet. But here is the reason for my post. I've seen some of you talking about scarves and hats. I've looked at the TLC web site. Would you help me come up with some alternatives to wearing my wig when I have to go out? I just can't get my brain wrapped around the way I look in public right now. Sorry for the pitiful post.
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Sherry9316: I ordered several different types of hats from both tlc and headcovers.com. I have a small head, and I wasn't sure which styles of hats would work for me. I wanted a variety to choose from, and I will send back what doesn't work. My order from headcovers came in and I liked 2 or maybe 3 of 8 I ordered. I should get an order from tlc tomorrow. Scarves don't work for me. I look like an idiot. Not my style--I need something with a brim of some type.
I have a wig that looks better to others than it does to me. I wear it at work, but at home I go bald unless I am cold from having the air conditioning on in the sauna that Georgia is in right now. To go out casually I usually choose a hat over the hair. Part of the reason for that is I need a band to put under the wig to keep it in place better. I ordered that from tlc. Hopefully that will make the wig stay put so i won't feel like tugging on it all day!
I saw a baseball cap on a website that said "Hairstyle courtesy of my oncologist" and another that said "I'm having a no hair day!" When someone complimented my "haircut" at work today, I said "Thanks, my oncologist provided it!" They honestly did not realize it was a wig. I don't know if it really looks that real or people are just that unaware...whatever!
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workmother - after my first tx I also felt weak and dizzy and awful - it turned out that my blood pressure had dropped really low. Maybe you should check whether this is the problem for you? if it is, there are things you can do to get it back up (some of which you should be doing anyway) - drink more, eat often, protein, etc. Speak to your dr and get them to take your blood pressure. Sometimes just knowing the reason for feeling yucky can help (i.e. it's not directly because of the chemo, but rather because the chemo caused a problem that can be fixed)
For everyone losing their hair - I did a really fun activity this morning (well, in my state, things qualify as fun that maybe wouldn't have in the past...). Based on a recommendation from someone in this group, I tried to get rid of as many short hairs on my head as possible, using a lint roller :-) It was lots of fun, didn't hurt, and was quite satisfying to see all the little hairs sticking to the roller.
I still have a lot of sores on my scalp and it hurts to put my head on the pillow at night, I am trying to keep my head uncovered as much as possible. I did a bit of research and it seems to be folliculitis caused by chemo. I will speak to my onc nurse today and see if she has any ideas or if i should go to a dermatologist.
Is anyone trying acupuncture to help with SEs and inability to sleep? I am thinking about it.
Latte
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I went and got a pedicure and manicure today ~ then took my 2 year old grandson to the golf course as he loves to 'help' the kids wash the golf carts ~ then went to play at the park ~ went for a long walk with a friend.....all day long my hair was shedding, coming out in bigger and bigger clumps so this evening my daughter buzzed my head, we left about 1/4 inch of what is left of my hair. It hit really hard tonight, I feel so desperately alone, even though I'm surrounded by wonderful friends and family. I look so different, I don't feel like myself at all. I decided that I'll have my pity party tonight, and then put on a happy face, with scarves for my head and all, tomorrow.
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How kind some people are. A complete stranger said to me today "oh you do look lovely in your hat" I have a feeling she knew that I was wearing it because of chemo hairloss, the no hair at the sides of your face and back of neck is a bit of a giveaway. Nevertheless I felt so good when she said it - when this is over I'm going to be bold enough to complement anyone I see in similar circumstances.I am a wee bit luckier than most of you though, we are at our coldest time so wearing a beanie or hat doesn't look too out of place in this weather.My thoughts are with those of you struggling over the hair loss issue - I think you'd be surprised at how self centered people are and how little most people actually notice about how others look. (apart from my lovely stranger!) We think our baldness , wig or scarf 'sticks out a mile' but in reality I reckon most don't even notice it.
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Hi Beanus!
Yes I developed Thrush also. I tool Acidophillus tabs (3mil/tablet) 3 or 4 times per day and that helped). My MD also prescribed Diflucan - that really fixed things up in about 3 days. If you have diarhhea with this, stay away from diary! Even yogurt!
Going in for 2nd tx today and hardly slept last night. Noticed yesterday that my eyebrows are thinning out, but not so much my hair. I wonder if by swabbing with Witch Hazel that has helped (closes the pores). The sore on my head are gone and the pimples are FINALLY clearing up (again thanks to Witch Hazel).
But in case my SE are as bad as last time I got all my meds (lomotil, difucan, nausea meds [which I didn't need last time}, acidophillus and the dreaded steroids - wonder if I'll get pimples again - dang!)
I'll keep you informed and wish everyone a SE free day!
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Going into my second treatment today, hoping it goes as well as the last. Sorry that I haven't been posting or even replaying pm's, all my family lives away and I get tired of writting but I do follow all the time and thankful to be part of this amazing group of coraugeous women.
Strengh and healing to all of us!!
Hugs,
Daniela
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Sherry, I have become a hat-olic! I buy a new hat every time I go into a store anymore. I have a million. I have a wig but it is too hot and I don't feel natural in it. I also went to the discussion board on "head coverings" and checked out some of those sites. I got some great headwraps on there. Hopefully you can find some alternatives that will work for you. I found some really cute ones at DSW shoes, Charlotte Russo (ordered online) and Old Navy.
Also, I am one day past my #2 treatment and doing ok. Was a little tired yesterday afternoon but otherwise doing ok. Tomorrow will be the real test for me. Hoping to have a good day!
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T~
Popping in here to answer your hiccup question. TERRIBLE hiccups during A/C. And..the most massive and awe inspiring burps I have ever had in my life. I was DS's hero, LOL!
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Latte - I think the dizziness and weakness may be blood pressure related. Spoke to nurse on the phone and thats what she said. I actually have high blood pressure and take meds for it. Have to monitor it now throughout day to see if I should skip meds some time if its too low. Last night and today have funky tongue - like i kind of burned it? And really bad sore throat. And a congested cough. Like too much mucus going down back of throat (maybe just regular allergies?)Nurse called to check in on me and said to come to triage today to have throat checked later if still bothering me. Think I may go just to ease my mind. Also, YES, I'm doing acupuncture. Never did it before but was recommended by a friend of mine who went through chemo last year. She swore by it. I went day before my treatment. Have another session today and will go every single week. Figure it can't hurt!
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Hello to all you courageous women!!! Monday, I had tx # 2 of Taxotere/Cytoxan. Aside from a 3 hour wait (Columbia was packed) and 8 attempts by 3 different nurses to start the infusion (port was not an option for 4 doses)....I had a meltdown.... but I survived and I'm happy to report that tweaking some of the drugs the past few days helped. Last night I had the Neulasta shot and the Onc suggested taking advil the day before and for a few days after to help alleviate the abdominal pain...I'm keeping my fingers crossed that it works this time!! Had a few hiccups but tolerable. Bloating is less due to pepcid and good ole pepto.
Today I look like that Fire Marshall with spotty bald patches. That was hilarious! Keep in mind that this is temporary and we are all moving forward! My head is as large as a watermelon too and I'm finding it very difficult to find caps/hats. Have the wig but it's just too hot so cotton scarves are working well. I need to find more. I do get lots of stares but I'm sure they are all because I'm beautiful as are all of you!!!!!!!! Stand tall!!
Lots of Hugs to you awe inspiring gals!! Best wishes for few SE!!
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Just checking in on all my new friends. Yesterday I spent an absolutely perfect day with a dear friend at her beautiful home enjoying her gardens, pool, wonderful food and wonderful conversation. Swimming with my 11 year old and fishing lost frogs out of the pool (and avoiding being dumped off my float!) helped me totally forget about cancer for the day. What a gift! I highly recommend taking a vacation from cancer to all of you.
For all my friends battling the hair loss. There are two wonderful sites that give a free high fashion headwrap to chemo girls. Some of the scarves are truly lovely. I also found an organization that offers free housecleaning services to anyone in chemo. It has cleaners in place nationwide. I can't deal with having anyone underfoot in my place, but I think it would be a wonderful gift for others. I am writing the addresses below. I think you have to copy and paste them, I still haven't figured out how to make the links work.
www.gailafund.org
www.franceluxe.com (click on Good Wishes)
www.cleaningforareason.org
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DesignerMom - so glad you had a beautiful day, that is great news!!!
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workmother - Hi, I am 8 days past my first TC and also have had a funky tongue as well. Mine feels burnt also. I also had a sore throat yesterday but I found that brushing my tongue lightly with some Biotene toothpaste and then rinsing with the Biotene mouthwash has helped some. Each day it does seem to get better.
Sherri K
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DesignerMom, I too am so glad you had such a wonderful day and thank you for the head-wrap sites!! I'm going outside right now to enjoy this 80 degree gorgeous day in New York!!
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Mari- I just got my headwrap from the francelux (Good Wishes) good wishes site. It is so beautiful and it comes with a card from the folks there all signed personally! It was so special. Definitely check that one out.
Enjoy the beautiful day! It is a beautiful one here in OH as well.
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Hallelujah! There is life after air conditioning. I feel released from my cave and am going to the park with my son. Enjoy some small something today, my brave friends!
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workmother - i was also on blood pressure medication for high blood pressure before chemo. then with chemo, my blood pressure plummeted to 80/60 and i felt terrible. my GP stopped my BP medication altogehter and then i felt much better, but I need to monitor it every day and if it goes up (for example, on days that i need to take steroids) then I need to start taking a reduced dose again. I hope you get it sorted soon, because it will make you feel much better.
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WooHoo! Had labs today and my blood work looks great! What a relief! Other results take until tomorrow, fingers crossed for those. Kittycat - yes all the supplements I'm taking were on a handout provided by my chemo nurse, so they're approved.
Julia
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Has anyone found anything that helps with the irritated scalp? I am trying some aloe vera and will let you know if it works...
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New treatment plan: I am switching to CMF. I will have 5 treatments, 3 weeks apart if I get Neulasta. I can go 4 weeks apart without Neulasta. I am going to opt for the 3 weeks, unless I can't tolerate the Neulasta. I did fine with it the first round of TC, so hopefully it will work out. I go on Friday at 11:00 to start with the CMF. Anyone on CMF have any information on what to expect? We are supposed to go out of town on Sunday to a party, and our 15 year old son is coming home from a couple weeks at camp. He hasn't seen me bald yet!
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Yay! No chemo today! My sweet onco decided my body was not going to tolerate the AC/T tx so we changed today to FEC once a week for 12 weeks starting next Wednesday. He says he doesn't think I'll have any trouble with this tx. He gave me an extra week off and I'm so glad. I feel pretty good today and look forward to several days of feeling more normal. My CT scan revealed a spot on my liver. Will have a PET scan in a couple of days. There's always something!
Thanks everyone for the hair covering tips. I wore a ball cap today to the onco office and I didn't feel as "odd" as I thought I would so I think that's the way I'll go for this summer while it's so hot. I'm just not digging my wig as much as I thought I would.
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