Chemo in Sept 08
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Hi Girls,
Gena, great news about the shrinkage, what a wonderful feeling, knowing all the SE's are worth it.
Funny about the hair commerical comments, I remember when I lost my hair I just keep looking around at people with long hair, thinking how strong their hair folicles must have to be to keep hold of such a lot of hair. This hair thing sure can turn into a full time hobby. My hair has stopped falling out and I still have some left, OK it's not a lot, but at least there is something there!
Those of you on taxotere, don't expect to get neuropathy, as I had 6 rounds of TX and didn't get it. Fingers crossed that none of you will either.
Jane M, you take care and get rid of that fever. Go ahead and take the disabled parking space, you have nothing to feel guilty about, we need all the help we can get. Just remember it is only a short term thing and you will be fighting fit and well again soon. We all will.
Donna, glad you wig is feeling good and that you have lots of good things to look forward to, I am looking forward to seeing my oldest son at Christmas when we visit, as he is at university in the Uk and we are so far away in Singapore.
Take care girls
Singapore Chris
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Girls, I was just wondering.....
I wear a little headcap liner with my wig. Can you use the gel headband and also a liner, or would I have to choose?
Chris
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I tried using both, but it felt like there was too much bulk; I left off the head cap liner and just used the gel band. It's probably whatever feels best for you.
Donna
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Great news - the PT said she doesn't think I have lymphodema - that it is just fluid from the surgeries which could take months to go away. She gave me the special massage which totally reduced all of the swelling and talked me through a lot of my questions. I go back next week for a follow up and then can go as needed. I am at high risk for it through radiation, but at least feel like it is a manageable process. According to her, if you get tx within a week of a flare up, they are generally able to stop any progression.
Today is the day for buzz cut - at this point it is almost a relief to be done with it. I didn't know about the gel band - am ordering one today.
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Let it be know from all the information I have read from all of you 14 days is the hair loss day...and yes on that 14 day it started shedding. It seems to me it takes about 9 days to feel good again (normal) except for the maltalic taste. Thanks to all of you that went before me. Chemo #2 is this Monday. Dose it get worst everytime? Thanks to you all.
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Ruth, great new about the lack of lymphodema! And you learned some valuable information that you have shared with all of us, thank you! I know what you mean about the buzz cut; I was happy to be rid of all of the shedding, but it was a stark reality moment to see myself without hair. It seemed to me that the two things that outwardly defined me as a woman were now gone. Yes, I know that I'm more than a couple of boobs and hair - it was just (and still is sometimes) an emotional event for me. I think that you will like the gel band - it sure has made wearing a cranial prothesis (lol) a lot more comfortable. It doesn't look like much for your $29, but I think that it's worth it.
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Hey Bunny, I had my second tx on Oct 2; my SEs were not as bad as #1 (and yes, day 14 was the magic hair loss day for me too); but I experienced more fatigue this time - it's taking a little longer to bounce back.
Donna
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I've not been posting, as I had a real meltdown this third treatment, and didn't think anything I said could possibly be of value to anyone, but now, I'm feeling back in the saddle.
For me, each treatment did get worse. This last time (3rd AC), even the thought of water made me nauseous. And it wasn't just the nausea, it was overwhelmingly tired. I'd have to convince myself to do things in 15 minute increments. I felt really horrible. I felt like giving up. I didn't think I could take one more treatment (I only have one more AC to go). Monday and Tuesday, I just felt like crying. Nothing felt right. I felt like a prisoner in a broken down body. Last night, I laughed for the first time in days. Today, I'm starting to feel like "me" again. I think I will make it! I think I may even be able to handle one more round. Trust me, that is a long ways from where I was on Monday.
So, I suppose the purpose of my post is just to let you know there may be bad days, horrible days, but if you can just get through them, it does get better. For me, the SE get worse each round, but it isn't true for everyone, so I wouldn't tell anyone to anticipate they will. I did buzz cut my hair, and I'm surprised I still have quite a bit left, even after 3 treatments. It is very thin, and wouldn't look good if I hadn't buzzed it, but it looks decent buzzed. I've come to grips with my hat, scarves, and wig (varies on the day).
My tumor is shrinking too, but I can definitely still feel it. Weird thing is my period came back, and I didn't expect that.
Hugs to all! And if you are reading, but not posting because you feel awful like I was, a big, big hug to you! You can get through this!
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Donna.....your cranial prosthesis made me laugh out loud.
I can't even begin to tell you all HOW many times I have been sitting here reading and all of a sudden read something funny, one of you has said.....and I belted out with laughter. Such a bond here......even tho I don't talk to any of you on a daily basis........I still know you are there!!!
Very comforting........hugsssss
I'm on day 15.....and my hair is just shedding maybe for or 5 hairs when I run my hands through it. I guess I'm just WISHING and HOPING that mine won't come out.......but I'm kidding myself. Even my Dr. said it would be out this week.....before my next round.
Look out Uncle Fester......here I come.......only I have bigger eyes than you do!!!!! LOL
I'm feeling sooo good right now.......almost normal again. My food tastes better and I'm laughing more........and more alert. Get to go for round two in less than a week ......but feeling this tumor shrinking is making this a LOT more bearable...........
Genia
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Hello Everyone-
Had my Emend, Adriamycin Cytoxan Chemo, Avastin, Aioxi IV yesterday and my Neulasta shot today. Still feeling as if I have a headache and upper back pain ( Thought that it could be the way I have been sitting on the chair spending endless hours reading about breast cancer )
Thankful I was approved for intermittent FLMA family medical leave act.. thank you very much Mr. Bill Clinton! It adds comfort if you need few days intermittently at work.
Having chemo before surgery... cross your fingers for me girls.
I am praying for you all.
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Glad you were approved Can't........I didn't have anything like that to fall back on. I'm self employed which translates to.......YOU'RE SCREWED......lol
Not sure what I'm gonna do......prob live in my car!
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Hi BrandonMom,
OH I hear you!
My third AC was the hardest too. I've had another person tell me that as well; I think with the 4th AC, you are just so glad it is over. My counts did keep going lower though, But...HANG IN THERE. I have finished all AC's and will get my second Taxol this upcoming Monday. Taxol has been so so so so so much easier. NO NAUSEA! Less fatigue. I feel like "me" again, vs. just days 11-14 feeling more back to me.
Not much longer now for you! ;-)
Springtime
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brandonmom- glad you are feeling a little better. I had TX 2 today of the FEC and the nausea isn't that bad but yes i am sooo much more tired this time than last time.
They put the epirubicin in a push this time instead of a slow drip so instead of 6 hrs it was more like 3-4. They were packed today and the girl sitting in front of me was there last time and reacted to her txotere. She didn't react the first time but did on #2 and 3. When we left she was back on the taxotere slow drip and they told her they would give her more pre-meds next time for #4- last one!
i am going to get some chicken noodle soup and then off to bed! Have a great night everhyone!
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springtime,
I just did my 2nd AC today.....I am now worried about number 3. I have done really good so far except for lack of appetite. Thank god for Zofran.....it is a miracle drug. Compazine was terrible.It made me tired and groggy.....but with the zofran I haven't even missed a day of work. Thank god I have a desk job and a great boss. Hair is the hardest part. I cut it short but it really is sad to see it keep falling out. I have lost a little weight due to eating more healthy and less quantity, I am very grateful, (about 20 lbs could stand to go!!!)
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Hi All...I had my 2nd TC treatment on Sept. 29. My experience with round 2 was that the side effects were much less although I had overwhelming fatigue on day 4 and 5. I will gladly take that over the diarrhea, nausea, and mouth sores after round one. Who knows what round 3 will bring. Just when you think you have it figured out and know what to expect it throws you a curve.
Hang in there all. L
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Genia, remember the old saying, "you can live in your car but you can't drive your house". I started a new topic about private insurance vs national healthcare and it's been quite interesting. It's bad enough that we have to go through all of this and then worrying about paying for it too! Hearing that your tumor is shrinking is priceless! Happy, happy news!!!! You do have some big, beautiful peepers Girlfriend!
I'm actually starting to feel better today; more energy. Hopefully I'll have two good weeks before my third tx. Still have burnt pizza mouth - but I can manage that. I just couldn't deal with the overwhelming fatigue this time. I'd have to rest from resting! I have a tendency to start sliding down the old depression downspout if I'm kept from my normal routine for too long.
I went to an American Cancer Society support group this evening and I am sooo glad that I did. October is Breast Cancer Awareness month (as I'm sure that we are all aware of) so we had a presentation about the new digital mammography machine that has just been installed at our hospital (we are a small not-for-profit community hospital). The difference in the clarity is amazing! What a wonderful new tool for us. I met a lot of survivors; people that know what I'm going through. I would highly recommend seeking out a support group in your area.
I hope that everyone is managing well and able to get a good night's rest.
Goodnight all.
Donna
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Genia - You're right about this group. I can share things here with you gals, that no one else would get.
I bought the pre-moistened flushable wipes and desitin expecting my bottom to hurt, but that's not where it hurts. I bought some vagisil cream to use. Is there anything else you can think of? I know it's not a yeast infection because there is no discharge and only the outside hurts.
I just started with the metal taste. Nothing tastes good and I have no appetite, but I force myself to eat because I need to keep up my strength. Maybe I can share the "chemo diet" with Jenny Craig. Any of you have itching? I had to get up in the middle of the night and take some Benadryl last night. I feel like I itch all over - head included - but I don't have a rash or hives or dry skin. What's up with that.
How do you all deal with people asking you how you feel and telling you how good you look. I feel guilty that I don't look sicker. Maybe after I lose my hair (Sunday or Monday if I am on the same schedule you all are on), I'll look sicker. Also, I know people are trying to be polite asking how I am, but I REALLY don't think they want to know that my crotch itches and my farts stink. Nor do they care that I can now wash my own hair and wear deodorant. How much info is too much and how much is too little? I have been trying to tell people "It could be worse, but it could be better." I'm not great, fine, well, peachy, ducky or super. Any catchy comebacks that won't tick them off?
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Use the "Chemo Brain" routine and tell them that you can't remember how you're feeling. And when they tell you that you are looking good tell em - you bet! Naw, when you lose your hair they'll just tell you how natural your wig looks - unless of course you go cranial commando. You might want to use some barrier cream (Boudreaux [sp?] Butt Paste) on you whole vaginal- rectal area; I've heard people say that your urine can indeed burn your tender skin
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Quote from Jane
"but I REALLY don't think they want to know that my crotch itches and my farts stink. Nor do they care that I can now wash my own hair and wear deodorant. How much info is too much and how much is too little? I have been trying to tell people "It could be worse, but it could be better." I'm not great, fine, well, peachy, ducky or super."
LMBOOOOOO.....I am cracking up here....you guys are TOO much I'm tellin ya. And I can SOOOO relate to those questions....even had a lady in Walmart yesterday TOUCH my hair.....and she said it still feels THICK.....lolol That was right AFTER I passed gas that was so bad I moved to another isle cause I was afraid someone would come towards me and just KNOW it was me............hahaha
Donna and the chemo brain excuse.......oh I haven't laughed this hard in DAYS!!!!!!!!!!!!
THANKS
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Hi Girls,
I have just laughed so much, I misread your message Donna and thought you were recommending that we put Butt Paste on our cranial commando heads! thank god for this site, it does keep us smiling.
Jane M, I know what you mean about feeling guilty we don't look sick, forget it, I have now taken it as a personal challenge to look even better than people without cancer!
Keep smiling. Singapore Chris
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Gina-
Can you go down to your the local social security office and apply for disibilty social security? One woman in my support group was able to get food assistance, medicare Blue Cross/Blue Sheild and SSI. She is a single mother... not easy and having breast cancer. She said it took a while but it was pro rated and the people in the Boston office where very helpful to guide her through the process.
Trude-
Great advice on switching the compazine to zofran. The copazine knocks me out. Gonna send an email over to my doctor as we speak. In addition I have been drinking Apple flavored pedialyte in the am to help with the cotton mouth.. it works pretty good.
This is the lighest cycle of my period that I can remember... at least I have one positive thing.
Thank you all for the helpful tips.
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Can't....I did get disability.
I was thankful for that.......although it is only $418 per month. I don't know how they think a person is supposed to survive on THAT amount.........just blows my mind. I got a much needed medical card.......so now I have insurance..........and I get $176.00 a month in food stamps.........don't feed two growing boys for long tho!!! Plus my income was all we had........guess you can go from being able to pay bills one day........to being unemployed the next!
I don't mean to sound ungrateful........but I can't understand why such low amounts on everything.
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Genia...try to stay away from Walmart (at least during the busy hours) I believe thats where I picked up a germ last week. A friend of mine say her 5 year old got RSV from the cart ( she was not around anyone else for weeks before). How is your white count? Have you checked with the American Cancer Soicety about $ help? A nurse from my Onc office told me they have $ for tansportation, wigs, hats, meds etc. Hang in there, I have two boys to, how are yours doing with it all? I to have people wanting to touch my hair...I now just say thanks when they tell me my hair looks good ( I use to say oh its a wig). Chemo #2 TC on Monday I plan on working my two 10 hour days next week I'm hoping for the energy....Genia buy frozen fruit bars they really help with the dry mouth etc. Brabbit
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bunny......my white counts were good. I haven't been out much.....especially before I had them checked. But once they were ok.......I didn't care as much.
And after I left the store........I put some germ x on my hands until I could get home to wash them.
The ACS has been working with the Social Sec agency to help me get some benefits. I'm gonna call the little gal that I've been talking to. Cause I think something is wrong...........
Thanks for all the advice.........I do appreciate it!
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Good luck with your next round too, bunny!
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Genia,
Check out the fundraising this family is doing. I don't think I could do something so aggressive, but you might get some ideas. Also note she lives in a wealthy community.
Lisa
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Hi girls,
Still trying to get over the 'yuck' feeling from tx 2 this week. If I could get rid of this headache, I think I would be doing a lot better. I'm also downish because of the whole hair thing and I just think I look older (who needs that?!). My skin is really dry - guess I need to keep up the hydration.
Anyone else noticing skin changes?
Hope everyone else is hanging in there or doing well!
Susan
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Sue508- My skin is so dry! I keep putting lotion on but feel like I didn't! The hair loss has been hard on my DH. My son is Ok with it since he did chemo 1 1/2 yrsago. I wear a scarf during the day, but take it off around 9:00 at night. They need to get used to this. I still have fuzz and am going to ask my friend to shave my head (he does his all the time). I do not feel like I could do it myself. Tx #2- having a hard time drinking, just don't feel hungry or thirsty. Still tired. Hope this is all I get. Have had abdominal cramping but no diarrhea yet.
D
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Hi Trudecox,
Hang in there. You are now 50% done with AC!!! If you are on Taxol next, for 95% (my ONC says) it is much easier. For me, it is so far (after Tx 1) it is so much easier. Tx #2 on Monday....
I cut my hair short too and then it fell out. Over time, I got used to a "dusting of hair" and wearing caps and scarves. I got a wig, but when the hair was first coming out, it was like too uncomfortable. But now that I feel better and am out more and seeing people more, I am happy I have a wig. My head got used to it too. (When I first put it on each morning, my scalp screams Nooooooooooo!!! but then it sort of goes numb or something.... ha!) I think it is used to it?
I don't know about you wonderful women, but I would find this whole thing a lot easier if you could just keep your own hair! I mean SHEESH already!
Springtime
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I agree Springtime......and today.......my hair is coming out by the handfuls. It's day 16 for me.
I went a looked at wigs......I looked rather sexy I must say.....lolol.
Not sure if I wanna get one......but it was fun trying them on!
This whole hair thing is bothering me too. I was a hair dresser several years ago........so my THING is hair....... it feels odd.
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