March 2012 chemo
Comments
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masserz - your hair description evokes such a vivid image...be sure to take before-and-after pics so that when all the BC crap has passed, you and your family can LAUGH!
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Just got home from port placement. Not as bad as I thought it would be. So I guess everything is a go to start chemo Monday. Hope everyone is hanging in there.
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Just spent 30 minutes typing (one handed) a long post to lots of different people and then POOF it was gone. ARRGHH! So... I'll have to be pretty general because I don't have 30 more minutes and I don't want to leave anyone out.
I'm so glad to have found such an amazing group of women to "talk" too. It helps me so much to read everyone's posts and I wish I could write more but my current one armed situation makes that hard.
Quick update - I was supposed to have my head shaved yesterday but my wig was on back order and they loaned me one until mine comes in. It's a slightly different style and I didn't want to be so obvious about switching wigs after a few days so I decided to hold out until Tuesday. I may cave and get it shaved this weekend if necessary.
My wrist surgery is still scheduled for Monday. I have the most horrendous, gigantic bruise above the cast that has me a little freaked out. If they have to cancel my surgery for any reason I may go off the deep end. I cannot handle one more thing.
So here is the way next week is shaping up for me - wrist surgery on Monday, head shave on Tuesday, and chemo (#2) on Wednesday. Sounds fun, huh? The good news is that my daughters love my wig, and they were sooooo worried about that part.
I hope everyone enjoys their weekend. I will be cheering loudly on the sideline of my girls' soccer games! Thinking about wrapping myself in bubble wrap as a precaution...
Hugs!
Jeanne
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Curious as to the use of caffeine during chemo, i.e. drinking coffee, black tea and green tea. I am finding it helpful for staying more alert, its clearing the head a little.. Has anyone had any bad caffeine experiences or information relevant to chemo? Thanks!
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Michelle - glad your surgery went well. I have had mine for 2 weeks now and it really doesn't bug me. I notice it sometime but the two seconds it takes to get the little thing in to do the blood draws and ivs makes it well worth it. Ok what is that called people?
Jeanne I hate it when I post and that happens! When I have my laptop out I actually open two browsers and read on one while replying on the other. One wrong click and it's gone! Good luck with surgery on Monday. Hope that it is uneventful.
Cucho the only thing I have been told about caffeine is that it isn't good for hydrating so to avoid for that reason. If you ate drinking plenty of other liquids I don't see where it would hurt. Just my opinion.
Personally I have totally lost my taste for coffee and diet coke so it hasnt been an issue but that probably made my headaches worse! -
Hi ladies
Just to let you know that after being amazed that I just had minor side affects from my first round of chemotherapy on March 12, I got carted off to Accident & Emergency (ER) on Wednesday.
Unfortunately, I was suffering chills and couldn't get warm. At A&E, the doctors ran a blood test and discovered I had neutropenia (low white blood count and very low neutrophils of 0.37).
They pumped me full of intravenous antibiotics, admitted me for 48 horus and I got home today.
Fine now, thank you!
Alice
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jeanne- busy week! Hope it goes well and have a blast at your girls soccer games! I think I heard once that bubble wrap is one accessory that goes with any outfit
cucho- I was told coffee was okay but to remember it dehydrates so to compensate with water, Heck, they told me I could send my husband out to get me some coffee during chemo! I don't know if I could make it through the day without my coffee. My taste buds have changed a bit and all coffee kind of thats like that really late night coffee you get at Dennys but I still drink it. (I just add cocoa). Still tastes weird but it's coffee.
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Oh Alice, sorry to hear but glda you made it home safe and sound! Stay warm and out of the hosp!
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Cmclean - I just look at my Keurig I got at Christmas and sigh.
Alice - oh my!! That is crazy. So glad that they got you pumped full of antibiotics. What do you do from here? Just lie low until next TX? -
Alice, glad they got you fixed up!
Had my shot this morning, so far so good! I am sure the steroids are helping me feel as good as I do, hope tomorrow when I am off them I still am rocking along!
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I am jealous of y'all with your steroid energy! I think the only thing they did was interfere with my sleep.
Here is another topic that I just saw referenced on another board. Do any of you feel that the SE's were very much downplayed to you before treatment? My family is VERY supportive, do not get me wrong, but they have told me on numerous occasions that my BS told them after my port surgery that the chemo would basically be not a big deal, that there are such good ways to control SE etc...that people went on with their lives/work, etc...which I know is true for many people. But that has not been the case for me.
Now keep in mind that this was my BS not my MO. I guess maybe because she is just a more "happy happy joy joy" personality. My MO didn't do either. She simply presented all the side effects in a clinical/matter of fact way. I just sometimes feel like I am supposed to be "getting over" my SE. Again, I am totally not complaining. I do nothing around here. DH is going to work, my parents are taking care of the house and kids and everyone is telling me how I just need to rest/recover, etc...but part of me wishes that the BS wouldn't have presented that information to them in that way because I think it is really inaccurate. Or it is for me at least.
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I got the shave today. They don't go all the way to smooth. There is a stubble which she told me to massage with the washcloth when I shower and it will work its way out. It's kind of like G.I. Jane only in my case it's gray. That's kind of yucky...no hiding gray roots. Also my part is still showing.That looks kind of funny. I'm definitely keeping it covered. I have a fitted hair net cap I got from the TLC catalog. It's good for catching stray hairs. Then I have a comfortable light cap over it. I made up my mind to do it today because I was starting to see that with as much hair as I have, I could be shedding for another two weeks. The shedding is pretty gross. I think it was better getting it over with quickly.
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Karri- thanks. Did yours feel tight? That's what's bugging me the most. My MO told my husband that SE would be rough but not like they used to be. He also told him that I would need to exercise. Hubby thinks we'll be out doing 2 mile walks!
Alice- sorry to hear about that. We have so much going on and then that happens. Hopefully they fixed you up and you're on the road to feeling better. -
fedfan - good for you for getting it over with. I am thinking I need to get a couple caps and such from them - I got some handmade ones through the New Outlook program but I don't know about the seams and such on those.
Michelle - truthfully I was SO SICK from the infection I had (my fever was 103 that night) I don't recall the actual couple of days after the port surgery...plus I still had pain from my SNB site. I do know the next day it was very sore all along my collarbone onto the back so be prepared for soreness. Mostly just when I was getting up and down from the bed, etc... It just depends on how hard they have to push and pull to get things into place. I hear ya, my mom is wanting me to start walking too...I know I need to, I just can't fathom walking anywhere except the bathroom right now!
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got a couple questions....
does n e one know if it is better to get hair cut short after the first tx....then go to beauty shop when that starts to do and get it buzzed????
a friend told me after she got it buzzed she ...at one point could draw like smiles in the fuzzbuzz and it came out...and she wore a satin nite hat as it irritated her at one point when it was buzzed and started falling out.
also, do u have to put a cream on your head after it comes out...if so...what kind
know i will have more ?? later
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Munnybunni- I am struggling with the same thing. I wasn't going to do anything this week, because it isn't even supposed to shed for 2 weeks. The lady at the wig place told me there was no need to get multiple cuts. i got a wig the same length as my hair now (long) so when I start the shedding i figure I will cut it off and wear my wig. But I still am not sure! I guess in the end it doesn't matter, whatever makes you feel the most comfortable. I am guessing once it starts I will just want to have it out!
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I have had such a problem with headaches this round that my ONC told me to drink caffeine. They finally stopped after day 9 and some caffeine. Stomach still not right. Anyone else having these lingering SE?
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Mselle - I'm only on day 2 of treatment, but I had coffee this monring and then took my naseau meds just in case. I have tried to eat tons of fibre and drink a lot of water and I think that is helping my stomach.
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MsBelle........my stomachs not right either, and I'm 5 days out from Tx 2. headaches are seeming to come on with the Nuelasta; I'm beginning to wonder. Finally had to quit taking my compazines and ativans, as they are causing big time fatigue, and all I want to do is sleep. Don't know what to do....just waiting it out at this point!
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I quit the compazine and Ativan as well. I was actually wondering if they were contributing to the headache. I have not eaten much today but getting ready to have a normal dinner. Hope I don't get the diarrhea going again. I took enough immodium yesterday I probably plugged myself up. I am also so tired of sleeping and feeling so fatigued.
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Kltb04- I hear you. My BS also told me that she has several patients in college and/or working full time with no problems because they're able to manage SE's so well. Well, now I feel like I'm being a big baby or something, because I haven't been coping do well with the SE's. I'm on day 11, and I'm STILL struggling with fatigue and nausea. I had to leave work early 3 times this week. I just feel like maybe I'm not as strong as these other super women that she was talking about.
Msbelle- I'm still having some lingering SE's too. Not only do I have the fatigue and nausea, but I have headaches and diarrhea too. Fantastic. -
Kitb03 and nsmolen
I cant stand when SE's get glossed over like everyone just goes cheerily about their normal business sans hair. For the love of god the professionals should know more than anyone that everyone has a different experience with different drugs and surgery for that matter. Fatique, pain, infections. BTW that goes for friends and family too that think because you look "fine" that everythnig is fairly normal. Most undersand, some don't get it.
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Regarding hair, today is my Day 11 and the first strands of hair have come out, just a few, but it is definitely happening. Before I started chemo, I cut my mid-chest long hair down to a few inches. I am planning to go for a buzz cut as soon as I get the courage together to do it.. I didnt expect it, but I am experiencing a strange sense of "hair mourning"..I guess its becuz its hard to say goodbye to anything you really like.
I was suffering from very bad headaches as well after chemo, even tho I dont regularly drink caffeine. But caffeine is helping reduce these headaches now, but even better is the Extra strength Aceteminopen- highly recommended to all!
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Regarding doctors glossing over SEs, that's actually really commonplace. The main reason is it's human nature to downplay bad things. Another is that they don't want people to choose not to do chemo because they are scared...that happens more often than you would think. Finally, some believe that if you go into it thinking all will be fine, you have a better chance of that being true. The mind IS a powerful thing. I don't think any doctors minimize the SEs to be callous or cause easy harm. They are well intended, or just plain clueless. Mind you, I'm not excusing it...it does make you feel like a wimp when you feel pain or have problems. There was actually a study done recently that said that a large percentage of doctors admit to lying to their patients about the seriousness of their condition or hiding the truth from them if they thought it would help their treatment. Talk to nurses...they will always tell you like it is. I honestly don't ask my MO much...I talk to the nurses and PAs. They are the ones hands on helping people so they have a better perspective anyway. I always get the best advice from them.
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I believe in the power of the mind and positive thinking. My MO didn't really gloss over my potential SE. He listed the things that may happen to me, but they may not. He encouranged (really insisted) that I work, continue my exercise and clean diet and get by the best I could. Yes I would have bad days, but I would get through it.
I liked that approach. I have done enough reading and research to know how bad it can be, but I have chosen to go in hoping for the best and preparing for the worst!
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i have a question....after they give you the adriamyacin...do you tinkle red for a couple days ...i know after they administered it...i had to go to bathroom and i tinkled and it was a light red...but ever since then it has been normal....is that ok
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Yes, totally normal munnybunni!
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My surgeon or MO never presented a bed of roses rather pretty straightforward without scaring the crap out of me enough that I wouldn't return. I am a positive person and have been lucky with SE's, some aren't as lucky though. Its a shame its more common than not than not to have an MO that doesn't give you the straight goods like you would from a nurse or NP/PA's.
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Dear Mary, I was a first timer today and went back to look to see if anyone had read my post and now I can't find the forum I was in LOL..................but that must have planned because I read your post! How wonderful to hear that you are well and active and once again enjoying life. I am not in a good place ..........waiting to start chemo and scared. Your diagnosis is somewhat similar to mine and of course not the same LOL. Your post just gave me such a boost on a night where I am trying to figure out what I will do and how I will do it. Yep, a planner, type a/b
. God love ya, gave my heart a smile! MaryIIa
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Hi All! Day 11 of #1, daughter's bday, still have hair for the party tomorrow. Which I'm so very grateful for.
So after the day in ER yesterday, my temp was normal, I learned that there is no infection anywhere, my blood counts are good, ultra sounds showed nothing to be concerned about, so this unexplained pain in my side has been served with Tylenol, which lessens the pain and my energy is so much better! So I don't know if day 11 is the day I turn the corner, or if it's the Tylenol, but it's a better day.
Thanks for all you loving thoughts, you amazing ladies.
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