Starting Chemo April 2009
Comments
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Paula - Sending you strength and support from my little corner of the world. Since my diagnosis - here is what I have figured out (and this is only for me, but maybe it will help you, too). Consistently, the WORST times are late at night. EVERYTHING seems scarier, worse, more upsetting and despair can creep in when it is dark and quiet and you are tired from the day. I have found that when it gets late, and I start to unravel around the edges, it means it is time for me to go to sleep. And every single time, after a good night's sleep, I wake up more able to deal with the situation. NOT PERFECTLY, but better. Sometimes if I start to feel that feeling, I just STOP what I am doing and say to my husband "It's time to tuck me in now" and we go upstairs. Some nights it is 9pm, but mostly at least 10.
If it is too early to sleep, I keep a book and my IPOD by the bed that I use to distract me until I am sleepy. I called the onco nurse about my skin today. Actually I took some digital pix and emailed them to her so she could see what I was talking about. She checked and first said benadryl cream and then called back later and said 1% cortisone cream. No miracle prescription drug for me, apparently.
That strikes me as weird because they seem to want to give you drugs for everything else! But I am coping. It is really ugly and can upset me if I focus on it or look in the mirror too much. But LUCKILY I work from home AND I still have hair. If this happened when I was bald and had no hair to distract around the hairline, this would really be awful. I hope it clears up before my hair falls out!I hope everyone in our little April family is having a good day today and enjoying the weather. At least it is beautiful where I am!
Amy
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Amy,
Thanks for your words of encouragement. I do feel better now that it's later in the afternoon. It's been such an ordeal. Bilat. masectomy with TRAM flap reconstruction. Had tons of support from friends and family. Don't get me wrong I still have support, but not like it was when the diagnosis was new. Sailed through the surgical recovery. And now I'm afraid to go back to work, in case I can't handle the side effects. I'm afraid that once I'm off of disablity then I will have to work, and I'm afraid of not being able to manage and the risk of infection. So the financial aspect is weighing on my mind as well. My husband says don't worry about it. I have been the primary income. I'm an RN and the risk of infection scares the hell out of me. Any words of advise?
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I work from home in a hermetically sealed environment (just about, anyway) so no advice on that front from me. BUT when I went in for my lumpectomy, the very first nurse who took care of me had just finished her own treatment and was still bald under her scrub cap. (She showed me!) She said that she had missed a little time during chemo due to some dizziness she experienced but nothing else. She seemed very upbeat and didn't mention infectio or any other SE at all.
I would suggest three things - maybe post your concern in a more general section of the message boards where more people will read it besides our little group, asking for any nurses who have been through treatment to contact you personally to get their advice. Second, maybe talk to HR and see what options are available to you within your job, possibly temporary reassign doing more admin stuff, less hands-on during your most vulnerable days in the cycle (this may be naiive of me and if so I apologize - I'm just being hopeful and throwing out ideas for you to consider) and finally, fully investigate your legal rights to be sure they are being fulfilled by your employer.I would think there is info on the web about this. There may even be a nurses' survivors group out there somewhere that would offer more specific help.
I will say this - NURSES ARE MY NEW HEROES!!! And as such, I wish you the smoothest journey possible, at work, at home, with your health and in every way. You deserve it!
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Paula3558 ~ Under Forum: Just Diagnosed, there is a topic called "Nurses With Breast Cancer". Many of your concerns are addressed there. It's a great thread with many helpful suggestions from nurses who continue to work through treatment. Ditto the comment from AmylsStrong "NURSES ARE MY NEW HEROES!"
Nico
When you're marching through Hell, keep marching. Winston Churchill
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Paula 3558,
I, too am an RN, and had first A/C on 4/22...(doing the Q2wk dose dense). I talked to my onc about work, and we compromised on me staying in a "safer" area (infection-wise) for the week after treatments, until I know my counts. I am fortunate that I can either be in the office or out in the field. Also, I have a very understanding and flexible supervisor, but I've been on the job for less than a yr, so am juggling time.
I agree with the previous advise to check with your HR dept...there may be more flexibility than you've needed to knopw about in the past!
I went in to work today, but only lasted 5hrs...still fighting this nausea, and the heat is not helping!!
Hope everyone else is doing well...sounds like everyone's getting to the "buzz" stage...Not there yet, but soon, Im sure.
Stay strong ladies!!!!!!
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Does everyone here have a port? I am just getting an IV each time. I had wondered if a port was better, but after reading some of the comments, I've decided maybe not. My daughter came over and shaved my head tonight; that was tough, but I surprised myself and didn't cry. I hate the idea of having to wear a wig or hat all of the time, but am hoping I'll get used to it. Instead of just kicking off my shoes when I come home from work, I have resorted to ditching the "foob" too, so now I guess I'll just add the wig! I'm so thankful for a husband who loves me no matter what.
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Hi All
Anyone 6 days out of chemo and still feeling crap?Shivering .nauseas and generally down-cant imagine that I will have recovered in time for the next dose-is this maybe when the white cell are at their lowest? Lindatwo-I dont have a port either and I have 8 rounds(on Two Now). The vein blew the last tome so we shall see what happens next round.
Hair not easy -out today in public for the first time in my wig-everyone says its nice etc but its still a big deal for me and my remaining hair hurts..
Enough complaining-hope you ladies are all doing well .
Anna
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lindatwo- I have a port and would not do this without it. After having them try to find places for ivs(three tries a couple times) for 4 surgeries I can not imagine having to have them hunt for a sport every week for 12 weeks and then herceptin every 3 week for rest of year. With the port one easy stick each week and they get all my labs and give me my chemo. The port was slightly uncomfortab;e for 1st couple weeks, but if I had not still be recovering from 3rd re-excision on other side it probably would have been better, both sides hurt at once. Today is taxol #6 halfway thru!!
Hope everyone else having treatments today does well. hugs Annette
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Hi Anna, I hope your experience will be like mine - it took me a good 8 days to feel better after the first treatment, but second time round it was just 2 really down days (Fri and Sat after Weds treatment) and some mild aches apart from that. The main ongoing problem for me has been sleeplessness. Onc's prescription does not help much!
We had a heat wave over the weekend and I had energy to spare on Sunday so did a trip to the garden center and chores in the yard! I am back in the office today and not very motivated after poor night's sleep, I will just sit at the computer and hope it stays quiet....
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Hi Ladies,
Thanks for listening to my complaining over the last couple of days since my last treatment. Treatment was thursday, and I finally feel much better. Bone pain is GONE!!!! Still have mild sinus headache, but that's tolerable. Couldn't eat anything except scrambled eggs and watermelon (not together,lol) for the last couple of days. Last night I had a craving for a chicken sandwich and sweet potatoe fries. My husband and I went to Frudruckers and it was the best sandwich I've had in a long time. Totally enjoyed it. The nausea and food repulsion are GONE!!! -- Short term disablity extended til 5/13. Feel better that I will have three treatments under my belt.My husband felt so helpless when I felt so bad. Have to keep reminding myself that we will get through this! God Bless and thanks again for being there.
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Anna,
Do you have an elevated temp.? If so call your oncologist or go to the ER.
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Hi Paula!
Glad to see you back! My bone pain post-Neulasta shot only lasted one (very intense) day and that was 4 days after the shot itself. My onc nurses said it would kick in 2 days post-shot, but it was 4 for me.
I go in for Chemo #2 on Friday. I feel more confident going into this one since I know how my body reacted the first time...I can get a jump on the SE's.
Take Care! Alaina
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Alaina, Good Luck on Friday. Take care.
Paula
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Well, I leave for hair dresser (ha, ha - not much left to "dress) in a few minutes. So glad she could buzz me today, since the hair loss excelerated overnight. Bringing my wigso she can help me with putting it on and adjusting it to my new buzz cut head. I'll be back on later to let you know if i feel the same freedom after the deed is done that others have described - keeping my fingers crossed. Actually, short of superglue, nothing will stop the hair shedding anyway, so I'd rather deal with the "loss" of the "loss" in one memorable action, then watching it day by day.
Anna, Paula is right - if you have shivering, you should call your onc or get checked - white counts start to go down by this time, and your shivering could be a warning that you are fighting an infection. My onc told me with or without fever, shivering or chills was a reason to call him. My white count was extremely low 7 days after treatment, with the neulasta, and onc started me on antibiotic orally as a precaution. Went back three days later, and white count out of danger range.
Went to ACS Look good - Feel better night last night (thank you Kathy), and had a fun time, lots of makeup to bring home - for someone who doesn't even wear lipstick,but I could definitely see that putting makeup on correctly when you are not feeling, looking your best, is not just for you, but for those around you who love and care for you. Very good experience!
So, off to the hair undresser!
Geri
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My husband has just told me something that has so pissed me off that I had to share it. Apparently a few weeks ago he discovered that my passport had expired. So, 4 days after starting to loose my hair, he tells me this. What am I supposed to do now? I really don't want to get a new 5 year passport photo with no hair or a wig. Everytime I look at it I will be reminded of this chemo time. Why didn't he tell me 2 weeks ago when I had hair!
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jlp and PaulaThanks girls for the info -I never thought that I would have a temp-I think that this must be the lowest point for the white cells-I feel so tired -have done about 1hr work all day and had to have a sleep as well-
Thisisme -dont worry about the passport -think of it as your 5yr anniversary and you can ditch it-if you really cant stand it loose the darn thing its easy to get another .
Has anyone tried doing chemo without the steroids?
Nadine54 how are you doing these days?how are the headwraps going-I liked the hats you posted and I think that thats the easiest solution in the end
Take care everyone
Anna
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Hi,
Well here I go, still on the fence about Chemo. Going in for my Heart Test Today and 1st round of Chemo on Thurs. 4-30-09 at 3:00pm. I'm not cutting my hair!! Yes I am rebillion all the way.
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It feels so good to have this group of sisters/friends who are walking this same path with me. I am so glad I found this board!
My skin seems to be not getting any worse today; definitely not better yet, but at least not worse. I am hoping I am turning the corner and will start to heal. I have an important client meeting on Monday and would really like to look reasonably decent. Thanks to all who responded.
I see the onco doc tomorrow for my first blood test to prep for Chemo #2. I am curious how that will go. Except for my skin, I feel fantastic and wonder if that will be a reflection on how things are going inside of me. I'll let you all know after the visit.
I am going to the Look Good/Feel Better class on 6/1. Being the WORST with makeup even when healthy, I am sure I will learn a lot!
InTheMoment: Good luck at the hairdresser - let us know how it went.
Hope everyone is having a good day!
Amy
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Hello to AmyIsStrong!,
Another Marylander here, and we have the same markers (ER+/PR-/HER2+).
What chemo-blend are you on? I'm on TCH. Going in for round 2 on Friday the 1st.
Alaina
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Hi,
Geri how was the hairdresser? You must feel so cool. What did your BF say about the makeup?
My hair is starting to hurt...I only hope I can make it till Saturday when I get my wig.
ThisIsMe I agree with Anna, pictures can be changed. He most likely is just as stressed as you.
Bombus sorry about the hair. I think I have to get mine buzzed too!
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I'm on TCH also. Getting my 2nd chemo 5/7. Are you going to Hopkins? I am at Helen Graham Center in Delaware. (We live right on the MD/DE state line.)
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My first chemo was today. I have to say it went quite well. No problem with putting in the needle. Didn't feel anything. Had a pleasant experience all around. I got:
Aloxi, Adavan, Decadron, Flush, then Cytaxon, then Taxiteer. I have to go back tomorrow for the Neulesta shot.So all in all, it was good. No side effects as yet
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Well, here I am - buzzed and beautiful
. Seriously, I don't have any regrets that I did this - the alternative of watching it fall out was not at all pleasant. The hair dresser could not have been more compassionate - they had me come when noone else was booked, and it turned out her mother had chemo 10 years ago, and she had buzzed her as well. They didn't charge me for the buzz (again, since they haven't charged me my last two pre-buzz short cuts either) which makes me a little uncomfortable, but I insisted on giving her a healthy tip (told her to donate it to bc research if she really didn't want to accept it personally.What I was suprised about is that there were only a few very small totally bald spots, somehow it felt like there were many more with all that shedding. I wore my wig out of the salon and for a few hours at home just to see how it would feel. It was ok, but I understand what people have said about the comfort factor - it was hot and after a while, I just needed the freedom of taking the wig off (in the house only at this point). I put a little soft sleep cap on for now, since the bit of stubble I have is slightly scratchy to lean my head on.
So ladies, since my first treatment was April 9th, I'm hear to tell ya, that when it starts to come out - take a deep breath and buzz - at least for me, it is a relief and I move on (again
.)Geri
Kathy - pm'd you
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Is anyone else gaining weight on chemo? I had my second AC last week and my weight keeps going up. My clothes are tight. I know part of it is lack of intense exercise, but it seems like I just get puffier and puffier each week. At this rate, I have to get some new clothes. Things don't taste good so I'm not really overeating, just eating more carbs than usual.
I am very tired this go around. I am having a tough time making it to my kids' bedtime at the end of the day! At least that is soon!
Pam
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Hi Pam,
I lost 10 lbs after my mastectomy and before my chemo started (stress I'm sure). Once i had my first A/C and got through the yucky 1st week, I, like you, was eating mostly carbs, and gained the 10 back, plus 5 more!. I started weighing myself every other day, and once I was feeling a bit better, started consiously substituting veggies and fruits for some of the carbs. I checked this morning, and lost 3 of the 5 lbs that I gained. Now I go for #2 on Thursday, so we'll see if the carb craze happens again - onc and I agreed that I eat what I want, and worry about any weight gain when the chemo is all done.
As for the tired, I can only imagine younger children to care for during this - I'm tired just caring for me! Hopefully you can get some restoring sleep!
((((HUGS)))
Geri
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My skin is settling down. Not better, but definitely not any worse. I am encouraged.
Today was a great day - I went for a long walk and even ran a little. I'm supposed to wait for my doctor's permission to resume exercise but I couldn't resist!Tomorrow is a big day for me - blood work for my 2nd chemo and meeting with the oncodoc. I wonder how my blood counts will be. I feel great so I am figuring they will be ok. But is there a connection with how you feel and how your blood is?
We shall see.Also, no hair loss for me yet. The TCH combo takes longer, I've heard. I know so many of my April sisters on ACT are buzzing and shaving but I am just waiting. To read of your experiences gives me confidence that I can do it. Never fear, I will be right behind you, bringing up the rear on the baldness front!
I'll let you know what I learn at the doctor's tomorrow. We have to have a little heart to heart as well - last visit he pressed me to start taking 'vitamin P' (prozac) in this cutesy way - said I should take it for 2 weeks and then my husband would decide if I needed to continue or not. You all don't know me (yet) but suffice it to say that approach did not go over well!!! I have had time to think about it and am going to present the communication style that I need (which is not cutesy or telling me that my husband can make my medical decisions for me) and ask him if he's able to serve as my doctor in that capacity. I'm pretty assertive generally but this is a big step. But one that HAS to be made. I have to stake my claim for my autonomy. WISH ME LUCK!!
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i have my second chemo tomorrow and i am so worried about it, i don't even know why. well that isn't really true, i am worried that my onc will not be pleased with me. i know i should have called with the side effects i was having but for some reason i couldn't. i also know that i have lost some weight in the last two weeks, i don't know how much but enough that she will not be pleased. i am also not looking forward to having the daily shots again, they were hell.
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I just got my second chemo yesterday. It was nerve-wrecking waiting an hour plus for the blood test results. I was so afraid that my white blood cell count won't be high enough to do the second round. Thankfully it was. I'm feeling ok today with the second chemo.....but the metal taste is and fatigue is creeping in again. I can just feel it. This morning, I found a pillow full of hair. The balding process has begun.
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Tulipbee, I had my first chemo yesterday. No effects yesterday, but this morning blaring headache, bad burning taste in the back of my mouth & some nausea. I did use the biotene mouthwash people suggested on here & it does work for the burning.
Hope your SE go quickly too
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bombus good luck today with round 2, you should tell the dr of SE they can change meds for you. You will be in my thoughts today.
kathy
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