Starting Chemo, November 2013 Group

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  • lisa137
    lisa137 Member Posts: 569
    edited December 2013


    Oops Jab...well, maybe maalox isn't your magic feather, but I'll bet there is one....but I'm scared to suggest anything lol.


    I haven't noticed any different smell to myself after chemo. After *surgery* I did! My left armpit where they removed all the lymph nodes was just evil and it took me literally weeks to get rid of it.


    A friend who had breast cancer a couple of years ago did tell a story to me the other night that might be relevant: she said that while she was on chemo one night she realized she could NOT go into the bathroom by her and her husband's bedroom. She said there was a sweet smell in there that she could not stand to be near. So her husband went in and looked and looked and took everything ---soaps and all that out--out of the bathroom. No help. Finally he looked a little closer, and there was a slight pinkish moldy type substance on the sink and on the toilet. He cleaned those off, and that fixed it. TINY little bits of pink mold, but she could smell it very clearly and couldn't get near it.

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  • FairyDogMother
    FairyDogMother Member Posts: 253
    edited December 2013


    image


    Here is me in the Big Girl Chair. My friend made me the pink,green alien blanket. She said, "Felix might look like those things." Felix is the name I gave my cancer.


    Amazon and Gayle- I hope you gals get better. Delays are just obstacles we can overcome.


    For the heartburn I am chewing Tums like no tomorrow. Try some KY.


    For lotion: head, lips, body I use Eucerin Aquaphor. It feels like crisco, but helps with dry skin.


    Note to the ladies who are going to shave heads. My 1' stub was shedding like mad yesterday I told hubby I'm done, because I'm not going to look like a spotty bald lady with a bad hair cut.. He shaved my head took 2 hours because we used my razor first. Turns out men's razor work better and I used some foaming cream.


    With Sex I had no sensation until this week. I felt like the third week I became somewhat "normal" only to get more Chemo.


    Chemo#2 is done! It almost got delayed due to high liver enzymes, but we did it. I'm at the halfway point. The next one is January 2. Way to bring in the new year. The SE showed up within 30 minutes of my drugs. They took longer on my T since I had a bad reaction last time. I just hope it worked. Total time 4:43 minutes in the Big Girl Chair today.


    Those doing chemo this week, wishing you minimal side effects. Those who are finishing, Yipee!

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  • Amazonwarrior
    Amazonwarrior Member Posts: 485
    edited December 2013


    Northwinds: You are not just imagining the smell of chemo. It's real. I could smell the chemo on me for about a week. I couldn't stand the scent of it on my own body. The smell itself would make me nauseous. I was constantly washing my clothes, bed sheets etc. When I went for my shiatsu massage, my masseur, a very sensitive Japanese guy, started to cough and said that it was the chemicals that he could smell on me. I trust that he was being sincere. The chemicals tend to stay in your system for a while.

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  • audra67
    audra67 Member Posts: 521
    edited December 2013

    LOVE YOU ALL!  Just got home from longest day ever!  I am exhausted but thrilled I was able to go out at all!  To Bloodwork, lunch, shopping, school, appt. home..

    I love reading posts and hearing about everyones day and side effects or lack thereof...

     I haven't had any heartburn at all but wake up every am early like 4 or 5 and have to have bowel movement!  It is SOOOOOO annoying...my stomach will kill me and wake me up and I'm so tired and try to stay asleep and Have to run to bathroom and go - then back to bed...weird...it could be I am eating same old foods...probably not wise.

    That and a new headache the last 2 days are my only side effects this time...praise God!  

    And fatigue of course but sortof getting used to that.

    You all with the 'private' infusion rooms I cannot even imagine!  I feel like a cow at auction at mine!  So sad...but once we are settled in and they give me that Ativan I don't even care and make friends with whoever is around.  I try for younger or my age, there are a lot of VERY OLD people there often...

    Fairydogmother-Love the photo and the blanket and you naming your cancer Felix!!! 

    Lisa137- you crack me up and your husband sounds as wonderful as mine...but yours is getting an awful lot more sex ! ha!  I have just been SOOO tired at night I cannot even stay awake to talk...maybe during the day tomorrow...

    I have a nose like a dog and I don't smell anything new??  But my nose has been running a lot...maybe that's masking chemo smell= gross! Just what we need is to smell too?! 

    I wore a scarf around my head today and called myself my husbands favorite wife...:)  It actually hurt my neck, maybe too long and too much to one side all day long...anyhow bald and bare now on the couch at my little command center...feeling much better.

    PatAlameda,Pompom, Paulette, - did you all get the neulasta shot? I really feel BETTER this time than last and I think it's because of that shot...!!!

    I am hungry a lot too and then too full to drink....my stomach doesn't seem to hold as much at a time..

    Wishing you all a great night!

    Thanks for the entertainment and honesty and friendships!  Maybe when we are all done we need to meet up somewhere and celebrate!



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  • Melrosemelrose
    Melrosemelrose Member Posts: 3,018
    edited December 2013

    Quirkygirl- Aquaphor lips or some Vaseline for lips worked the best for me when my lips dried out from the chemo.  You may also want to make sure that you use plenty of cream/lotion on your feet and hands since those areas dry out from the chemo.  I used Cetaphil cream in a jar on my feet and hands then would put socks on my feet and cotton gloves on my hands to keep the cream on longer.  The cotton gloves can be purchased at Walgreens or CVS near the bandaids....


     

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  • Phebe38
    Phebe38 Member Posts: 197
    edited December 2013


    hi everyone just want to say I enjoy reading your posts. Guess what? I'm excited going for a workshop Look great Feel Good. They are going to help me and showe how to put makeup. I talk to a friend who went there and she said she really enjoyed herself when she took it. She said you will have fun. It starts tomorrow at 10 to 12.

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  • Bec65
    Bec65 Member Posts: 312
    edited December 2013


    4th AC today. Wrung out. Why so different than other three? I don't even have the energy to read all your posts, which would make me cranky if I had the energy. Tomorrow......

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  • jab
    jab Member Posts: 220
    edited December 2013


    Northwinds - yes to body smell from me. I feel like I am a chemical dispenser. I have a particularly sensitive snout and quite frankly hate my smell. My husband doesn't seem to notice.


    Fairydogmother - great photo - you look rather sporting bald! I hope I look so good!


    Amazon - did you say your hair started to come out on day 14? How is it now? Today is my day 14 and I left a ring of hair In the tub - (and here I thought I thwarted this hair loss thing....wrong!) I'm not sure what happens next - does hair loss pick up some speed? I'm not sure when the razor should come out.

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  • FairyDogMother
    FairyDogMother Member Posts: 253
    edited December 2013


    Thank you for the nice comments.


    Northwinds: I smell the chemo. It sucks because I smell it off and on weeks afterward. It is worst if I bend down. I also taste it even with lemon drops in mouth or other hard candies.


    Bec65- Did the look good feel better on Monday. It was great. I learned eyebrows, which is the only thing I have left now. I learned how to tie scarfs. You will meet some new lady friends. My kit was missing the concealer and eyeshadow. I am most cried about the concealer since I have zits at 36yo, but I realized that is so trivial. Everyone had something missing.


    My hair started to really fall out Day 10 by Day 13 I could get clumps, so I shaved it down to 1" then the rest of the time the stubble started. I find wearing funny earrings or nice earrings is good compliment to the hair issue.


    Tonight my SE are worst the first chemo, but I'm hanging tough. Keep telling myself you will not be praying to the porcelain goddess.





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  • Phebe38
    Phebe38 Member Posts: 197
    edited December 2013


    I have my 2nd chemo on Dec 3rd, next one is on Christmas Eve. What a bummer! But I'm determined to get throw this.

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  • atlbraves
    atlbraves Member Posts: 50
    edited December 2013


    Howdy (said Minnie Pearl style!)


    I don't *think* I smell different, but I am very adverse to garlic and onions since Chemo 1. My darling ate what must have been massive amounts of garlic the second/third day after my infusion and I couldn't be near him for two days. Even slept in a different bed. Ugh, he smelled like decay to me. He's now avoiding all strong foods for me, which is super sweet, but I still don't have the zip for sex. Poor guy. Lisa, your husband seems to be making out (pun intended) the best! You go, girl!


    Ellen, I had wondered if I would end up preemptively shaving my head...I'm sorry you're a bit worried about it.


    FairyDog, I love, love, love your eyeglasses. So cute!


    Boy, after reading some posts about the infusion rooms, I felt guilty. My place is gorge...big windows on the 9th floor, private (curtained) room with a recliner for me and chairs for my entourage, a tv/DVD player, mini-fridge. Durn.


    Hugs all around!

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  • QuirkyGirl
    QuirkyGirl Member Posts: 383
    edited December 2013


    I so enjoy catching up with you! Great photo FDM and thanks for the tips ladies. Wishing sweet dreams to all and to all a good night!

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  • Phebe38
    Phebe38 Member Posts: 197
    edited December 2013


    Am I in the wrong group? Nobody acknowledge what I post. Maybe the best way for me is to sit in a corner and listen. Not a word just listen. I will continue to come and read but I won't post. I know I'm from Canada. We don't have same interests. Don't get me wrong I really enjoy the suggestions that you gave to each other. One thing I have in common with you ladies is that I have breast cancer and I'm having chemo just like you ladies. I lost my hair like you ladies. Buy what I found different is that my port is inserted under my upper right arm. That's it for now I will wait to see if anyone respond. If I don't get a respond I promise I won't utter a word. I will come and read. There done my venting

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  • Phebe38
    Phebe38 Member Posts: 197
    edited December 2013


    Am I in the wrong group? Nobody acknowledge what I post. Maybe the best way for me is to sit in a corner and listen. Not a word just listen. I will continue to come and read but I won't post. I know I'm from Canada. We don't have same interests. Don't get me wrong I really enjoy the suggestions that you gave to each other. One thing I have in common with you ladies is that I have breast cancer and I'm having chemo just like you ladies. I lost my hair like you ladies. But what I found different is that my port is inserted under my upper right arm. That's it for now I will wait to see if anyone respond. If I don't get a respond I promise I won't utter a word. I will come and read. There done my venting

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  • smrlvr
    smrlvr Member Posts: 422
    edited December 2013


    jab, my hair started to fall out on day 15 then with a vengeance a few days after that. That is when my friend buzzed it to about half an inch. I had a tub full,of that today so I think I am going to shave it off more tomorrow. Wore my wig out today for the first time.


    It seems we all have some really kind and patient husbands. I am finally feeling in the mood this week. My husband has been very patient and kind.


    Audra, I awoke to the same sensation this morning. I guess it's better than being constipated.


    I haven't noticed any smell, but I also have a chronic runny nose and sinus headache. I bought some hand sanitizer and that smell makes me gag now. Also, I have lost my taste for coffee. I love coffee.


    I went for genetic counseling today to get tested for the BRAC gene. I am doing this for my daughters and to try to make some sense of this.


    Have a good night, everyone!

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  • lisa137
    lisa137 Member Posts: 569
    edited December 2013


    @Phebe I'm almost sure I have responded to you before...but I will ask you, what it's like to have the port under the arm? Mine is up by my collarbone and just under my throat, and i hated it at first, but I guess I've gotten used to it now; don't think about it much anymore. Phebe....please believe, we DO care!! I promise! Keep posting. :)


    I asked my husband if I smelled like chemo to him and he he said "no, but i'm not really sniffing at you a whole lot either...." My dogs and cat don't seem to notice a difference, BUT, now that I think about it, last week we were at my mom's house and her dachsund all but ignored me. This is a dog that I raised from a puppy myself, and usually if I'm at their house she is in my lap and on of me almost all the time. So I guess I smelled different to her, at least.


    I am actually I think on day 16, and this is when my hair began to fall out for real. My husband went after it a bit with some duct tape (lol) but realized it was going to take a LOT of duct tape and gave up.

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  • Phebe38
    Phebe38 Member Posts: 197
    edited December 2013


    hi Lisa having a port under my arm so like a lump there and it's sensitive. Every day it's getting better I can use it more or be able to wipe my bum lol. Before I couldn't. I was using my left arm. So that's improvement.


    I find that having a pet is great. They seemed to know when you're hurting

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  • Palameda
    Palameda Member Posts: 259
    edited December 2013


    Phebe, I don't understand your post where I believe you state you feel ignored. I went back and looked at the history of your posts. You first posted on Dec 1, and Lisa, Amazon and myself all welcomed you. On Dec 6 Bec welcomed you. You do realize that by definition we are all unwell much of the time, and just trying to get by. We post here to vent and seek support and advice from each other. Many of us go for days too fatigued and ill to post. If we don't respond to someone's post perhaps we have nothing to add or don't have the energy or feel well enough.


    There is no in group, nor an excluded group. I am truly sorry you feel that way. Perhaps some of us who have been here since the end of October have gotten to "know" each other better than others. There are several other Canadiennes here, however: I don't think there is even one woman with a mean spirit. In your posts you don't so much ask for advice as narrate what you are doing. If you asked for advice I think people would try to find the energy to help and answer. If you narrate, we simply read your story. Just because we do not write a response does not mean you aren't heard.

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  • wrenn
    wrenn Member Posts: 2,707
    edited December 2013


    i'm Canadian and see our interests as all being the same Phebe. I don't understand how being Canadian makes a difference when you are struggling to survive. I would not have made it this far without the women here. I agree with Pat that all questions are answered no matter how sick and tired we are so please join in. If there is no question but just a recounting of your day we are still reading but may have nothing to add.


    Hope everyone is doing ok xo

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  • Pompom21
    Pompom21 Member Posts: 15
    edited December 2013


    Audra: symptoms for me this time are lessened. Day 5 was the worst. Day 6 was better. Seems like a period of feeling almost normal then hit with a bout of systems, nausea or cramps or fatigue. Day 7 was going even better until I went to the Look Good, Feel Good, seminar. The workshop was fun and we got a nice collection of makeup. The bad part was leaving and discovering that I had done something to my lower back. Bad spasms and a feeling like the lower spine was about to come loose. Heavens to Betsy! I really don't need another complication right now. Anyone else experience this? I would pay big money to find out that it is a little known side effect of chemo or the Neulasta shot.


    Other symptoms are super dry skin, terrible taste and dryness in mouth, no appetite.


    My hair came out on day 15 of the 1 st round and I need it a little earlier this time or I may have to shave the stubble on my head. It is starting to bug me when I try to sleep.


    Good luck today everyone! Love the posts and ability to share anything and everything.

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  • lisa137
    lisa137 Member Posts: 569
    edited December 2013


    @Phebe I agree about the pets. When I had my surgery, our puppy, Scarlett was only eight months old, but she went immediately from jumping all over me and wanting to sleep on top of me, to being (somewhat more gentle) with me and always sleeping right at the foot of my bed. Our other dog is much smaller, but she's done her part by NOT demanding that I play with her half the day every day---she waits til my husband gets home and bugs him to play instead. It's as if she knows I'm not really up to it. And, our 9 year old cat has taken to sleeping beside me for the first time in his life. They do help, a lot.... we don't have kids, so these critters ARE our kids.

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  • audra67
    audra67 Member Posts: 521
    edited December 2013

    Hi Phoebe!  Welcome!  Sucks to be here but also good there is a 'here' for us all...misery loves company right?

    OMG!  I woke up at 1am to excruciating hip, lower back and pelvis pain!  Is that from the neulasta???  Sounds sortof like yours too PomPom 21...although I just had the shot Monday and you got yours last week right?  OMG!  I took 4 advil and rubbed it through my sleepy haze and went back to sleep.  Now up at crack of dawn with my morning pooping ritual that really has become ridiculous!  I have a headache, I think from not enough sleep or just side effects of one of these medicines.... I am really questioning why I got the nuelasta, I wanted it as my wbc was 2 last time and that worried me, but when I got wbc yesterday it was a 4 and the nurse said my nuelasta probably hadn't even kicked in yet..??? So I would've been ok without it?? Do you think?  Does wbc get better each time to compensate?

    Also when alarm clock went off this am I was in a hot flash!  Whole body on fire!  Our room is set to 64 at night and I had to pull off all covers and just cool...so that's new too.  Hoping that means no period coming? 

    I am getting tired of the side effects./ new effects/surprises!  I thought I had this figured out and under control and now this! 

    I was feeling much better this round also until that!  I just took more advil as my lower back starting to hurt again..

    If this is from Nuelasta, how long do these body aches last???  Do they come and go or just continuous???

    HELP!!!  Feeling so cranky and upset this am!  I am on day 7 today and was hoping for feeling better each day...why does it not work that way??


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  • inks
    inks Member Posts: 746
    edited December 2013


    Phebe38 - please keep posting there are way more ladies reading than there are actually posting. I for sure do not have the energy to respond to all posts, mentally I do but..... But your posts are meaningful to somebody out there, trust me.


    I made it to my 3rd AC infusion yesterday despite 6inches of snow in our driveway and having to drive 35 m/h for first 20 minutes. I am definitely a believer in some higher power now that I pulled through all that deep snow in my tiny hybrid car. They dropped the Ativan because I was driving myself and so far I have been fine.


    The only thing that bothers me is that they have dropped my dose a little because I have had a cold the last 2 times. I'll ask about that next time but I wonder if anyone else has experience with lowered dose for any reason and what they were told?


    Me and my husband have noticed the chemo smell as well. I can't drink coffee the first week after AC but the second week it tastes kinda OK.

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  • audra67
    audra67 Member Posts: 521
    edited December 2013

    We have an English Mastiff that is the most LOVING dog on earth...and she still loves me, about the smell....so I wonder if some dogs more smell sensitive...I HATE smelling...and the baby duck/bald head./ and wondering what will be new each day to make me feel like crap...

    cranky today....arrrrhgghhhh.

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  • inks
    inks Member Posts: 746
    edited December 2013


    audra67 - my back and hip pain hit me also on day 6 after Neulasta. Ibuprofen helped me, I was able to take 400mg because I had cleared it with my doctor first. I wonder if Claritin would help at this point. But there is hope - I did not get the pain with the second time, they explain that bone marrow or what not has already stretched out from the first time. My pain felt like the horrible pain from my backlabour with my first baby. Hang in there, Neulasta is working!

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  • ellenkc
    ellenkc Member Posts: 173
    edited December 2013


    Yay! I managed to give myself the Neulasta shot yesterday. I was too chicken to do the first one, but when the doc showed me that the needle is only 5/8 of an inch, and that that is too short to hit anything and do any damage (particularly if you have as much padding as I do ), I was okay with it. Now it is no big deal. How quickly we change in this whole experience!


    But here is my question: HOW SHOULD WE DISPOSE OF THE SYRINGE? All the directions in the package say is to check with your doc (which I can do later today if necessary) as there may be state or local regulations. Maybe I am too conscious of this after running a facility with a medical component, but felt I should check. And there is always so much knowledge on this board!


    Had a really crappy day yesterday after my 3rd infusion on Tuesday, but slept 8 hours last night and woke up feeling great. Hope that lasts!


    Ellen

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  • audra67
    audra67 Member Posts: 521
    edited December 2013

    Inks-  Did it go away after the one night?  Or did you keep getting it??  I am taking Claritin for last 5 days....

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  • inks
    inks Member Posts: 746
    edited December 2013


    ellenkc - when I gave my husband Humira shots at home they gave him a container for disposing the syringes. But the instructions that came with his shot said that you could use a sturdy plastic container like a laundry detergent container (has to be plastic, not glass). You should also be able to place a call to your mail order pharmacy (that sent you the shot) to get the container, we had to do it once. Sometimes they will also mail you a prepaid box to send the container back. But you can take the container to your doctors office and they will handle it from there. So glad to hear you were able to do the shot yourself. I will try to do it at home the next round too to save me from a 2hour round trip.


    audra67 - I was fine after taking ibuprofen every 6 hours twice. But keep in mind I am doing AC it might be a little different. I wonder if heating pad would help if meds don't help, it truly was excruciating... I also got clearance to take my leftover pain meds from my surgery, but I asked beforehand, but never took them. Sending hugs to you!

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  • QuirkyGirl
    QuirkyGirl Member Posts: 383
    edited December 2013


    sorry you're in so much pain, Audra. :(. I hope relief comes soon. I've been on Claritin since Monday pm (shot Tuesday) and the only real related pain got started at 4 am in the tops of my feet! Now spreading slowly up to my hips. SE are so odd and incredibly personal. I'm on Day 4 of my first cycle and my taste buds are now being effected. I find it strangely fascinating to see how my body reacts.


    Ellen - hooray for the good day!


    Phebe - post away and know we hear you and care very much even if we aren't responding to them always. Have you considered adding the rest of your profile info like surgery and type of chemo? It can be helpful in deciding how to respond as in seeing if your drug regime or timing matches someone else's.


    Paulette - feel I missed a post along the way. You're in the hospital? How come?


    FDM - such a great photo! Really made me smile.

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  • jab
    jab Member Posts: 220
    edited December 2013


    Hey Ladies, another Canadian here, and OMG its -21 deg c with wind chill - Send some global warming this way please.......INKS, The snow has not started here in sunny NB yet, so if you don't mind keeping it in NY that would be great.


    Audra - My first shot of Neulasta had me in tears - For one day after the injection my bones felt like they were being cored. So I totally understand why you might be cranky. I was more bi@#$hy so good for you for just being cranky! BTW -you have an English Mastiff - WOW - Great dogs!! I hear they are like 200lb Teddy Bears....


    I notice many people are taking Claritin - I asked my pharmacist about this she poo pooed it, saying it was no longer recommended with Chemo, so I didn't get any. Do you find it helps and with what exactly?


    Ellen, with regards to the syringe - I'd ask your pharmacy - they might have disposalble dispensers - If not take it to the hospital next time through. I'm not sure that helps, but I am going to have the same problem so I'll ask my pharmacist and get back to you today.


    Phebe - I haven't posted much until the last few days. I have been nauseated and dizzy (You might note my posts seem to focus on vomit, sorry about that but its top of mind with me) Anywho, welcome, if I haven't already said that. Any advise you might have for me re your port is appreciated as I get mine on Monday. Also, as a east coast Canadian, cheers to your good health too (I have a metaphorical beer in my hand)


    Everyone, thanks for the hair advise - I think it will get buzzed by the weekend based on the rate its falling out. I have such a ugly bumpy head.....


    My best to you all


    JAB

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