February 2011 chemo pals

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  • EmilyInOntario
    EmilyInOntario Member Posts: 626
    edited February 2011

    Charlottesmama...does your cancer centre have a social worker or some supportive service that you could talk to about getting some help with care for your daughter? This cancer journey is hard enough to deal with without extra stress. Or can you afford someone to come in to babysit a few hours a day so you get your rest? Do not hesitate to ask for help wherever you can find it.

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  • Kymn
    Kymn Member Posts: 999
    edited February 2011

    Hi ladies

    Sorry you are going through such a hard time with your daughter Michelle. My son who is 14 now is ADHD with Aspergurs tendencies. It has been a hard long road with him but watching the improvments even the small ones along the way have so been worth it. he is starting to come into his own and I am so proud of him and all the work to get where he his today. Even has a little group of friends now they are WWE fans oh lord help me lol but I love that he is now socializing. but I do remember how many tears i shed over that boy trying to do what was best for him. I just might take your advice on the short due.

    Hi Mary I am going wig shopping this week to try and get an idea of what will look good. I definetly plan on wearing one at least at work. Maybe even to bed with DH i will get a few and he will get a  new woman every night lucky man lol.

    I am trying to find my positive side,I know its in there somewhere I had it a month ago before finding this stupid BC and I know they didnt take it out during surgery so going to dig deep and regain my power. Gee dont i sound strong hope i can believe what i am saying.

    Well sweet dream ladies talk to you tomorrow

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  • LisaGH
    LisaGH Member Posts: 242
    edited February 2011

    New to this group.

    Hi all,

    Going to get my port today (in about 5 hours I'll be headed to the hospital).

    Start chemo 2/16. TCH x 6 cycles. Herceptin of course for a year. Scared. Read up alot on side effects this weekend. 

     Had BMX w/ TE. Still have some days where being tired is tough. Also the TE pain is rough at times. Not sure why some days it feels worse than others. Go for my first post op fill this week on Thursdays.

     Look forward to support- have read all the posts. Hope I can join this support group of us starting chemo in February. I too thought- Happy Valentine's day to me- I get chemo. But then, Yes, in a way I am thankful that I am on what I am on and where I am.

     I too started a blog http: pinkflamingowarrior.blogspot.com It helps me deal w/ the craziness of this disease. I love the other blog- Michelle's. It's on track.

     Weird when I think/hear how 'typical' I am. Gearing up for battle.

     Better take a nap before port insertion time.

    Hope to talk more w/ everyone.I want/need this support.

    Lisa

    IDC stage 1; ER+, PR (1 percent- not sure if positive or negative w/ that- MD says it doesn't matter); HER2 3+

    BMX w/ TE 1/22/2011

    Port- to be done today.

    TCH starting 2/16

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  • Kymn
    Kymn Member Posts: 999
    edited February 2011

    Welcome LisaGH you will definetly get support here, I too am new dont know when I will be starting chemo yet but know its in my future, waiting for my second lumpectomy to be done first. I know it is weird how typical we are when we read all the other posts and how the women are feeling during this process, its somewhat comforting to know all the crazy emotions are normal and all we can do is get through them and put one foot in front of the other. I just keep thinking by next christmas I should be done all the treatments and mending, seems so far away but at least there is a light to focus on. I will make that my best christmas every with my family and trully appreciate all it stands for . Religious or not its about love and appreciated those around you I am sure these are lessons I will be learning plenty of in the months to come.

    I hope everything went ok with the port, do you have to be put under for that? Afraid I dont know much about them yet.

    Look forward to getting to know you

    Kymn

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  • safari94
    safari94 Member Posts: 19
    edited February 2011

    Thanks for the warm welcome Paula! This is definitely a journey that you don't want to take alone! It is really difficult to 'compare notes' when we are all different but I think this has really helped my fear factor! It helps so much to know that you are not ALONE! A feeling that I find myself getting lost in :(  Take care! Lots of love and hugs from sunny west palm beach! :)

    Mary

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  • LisaGH
    LisaGH Member Posts: 242
    edited February 2011

    Thanks- we all sound alot alike-

    I am just home from having port placed. Of everything I have been through so far that has been painful, this was the least painful.

    The IV they started did hurt- and yes I was so happy that's the last for a while. I have no veins. They used a very small IV and it was still uncomfortable.

     My procedures was done by my BS- he's fabulous MD. I am so blessed there. I was given meds to relax me- and then they told me the meds would make me be/feel asleep. I remember getting on the OR table, being told I was going to be given some medicine to make me sleepy- then woke up in recovery. Was short- was not intubated so my throat not sore or anything like that. I had a chest xray done in recovery to make sure port was in place (routine). Then had to wait for that result before I could leave.

    I am tired and a little sleepy. I so far have no regrets. I cannot stand the thought of more IVs- there are no veins left. I"ll be on TCH- so one year of trying to be stuck- I don't think so.

     Happy to answer questions about that. I start TCH next week 2/16. They said it'll take about 4 hours or so the first time. Reading up on all of it trying to think through how to start this part of the battle.

    So thankful folks on here are all near the same place (and others w/ great advice who have moved past this).

    Lisa

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  • crog234
    crog234 Member Posts: 801
    edited February 2011

    Hi Lisa,

     I have to agree with you on the port placement.  It was the least in the painful category.   I am so glad they don't have to try and find a vein (it usually took them 2 or 3 tries) that would work and not colapse on them. 

    Cindy

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  • goldiebelle
    goldiebelle Member Posts: 45
    edited February 2011

    Hi all

    I will be having my second round of chemo on tomorrow. My doc is doing my chemo a little different. There is a shortage of the A chemo drug so I am doing 4 taxol then hopefully they will have the A drug for my next four treatments. My doc says if they do not get the A in they will start me on the E. I am a little concerned about that but I have no choice. Hope we all get through this together. I feel better knowing I am not alone.



    D

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited February 2011

    Hello FebBabes-

    Michelle - I used to live near you in Rome, NY.  My husband was stationed at Griffiss AFB and my kids were born there.  Love your hair!  Can you qualify for respite care from community/cancer sources?  I can't imagine doing this with young ones - mine are 21 & 22.  They have found support from their friends who have had moms who are survivors.

    Ladies who have already started - sounds like you all are hanging in, my prayers are answered for you.

    Ladies who are starting soon - I am sure you all are nervous as hell, like me.  It is a mix of trying to get the errands done, and trying to get the mind right.  Errands are easier.  I keep thinking back to that saying "sometimes you are the windshield, sometimes you are the bug" and right now we are all bugs.  At some point in the past we were windshields, and we will be again!  This will be a year of being a bug, so I am trying to adjust!

    I cut my hair short, an inch in the back with side sweeping bangs in the front.  I saved my eight inches of hair to send to the lady here in Tampa who can make it into a thing to wear under hats.  Site is www.hatswithhair.com and they have all kinds of stuff.  Your hair, human hair and synthetic.  Even a swimming one for you babyswim!  I am doing wig/scarf/hat/bald at home,maybe.  I bought a "cranial prosthesis" that is heat tolerant so I can flat iron and blow dry it.  It is Racquel Welch - I paid more for it in a shop than I found it for online, FYI.  I probably should have tried it on in the shop but bought it online later.  I really just wanted to get it done!

    Something useful - www.cancer.org American Cancer Society has a chemotherapy side effects worksheet.  You can find it under the site, chemotherapy, then look down the list.  I thought it might be helpful to track stuff.

    Question - Did you ladies get prescriptions ahead of your first chemo?  I have not and am worried about that.  I have nothing (other than Xanax, which I have not tried yet even though I have had the scrip since October) to take before.  Also somewhat worried about the timing conversation taking place - I was diagnosed 9/27/10, BMX 11/1/10, complete node dissection 12/6/10, 3 subsequent skin excisions in Dec '10 and Jan '11.  By the time I start it will have been 3 and 1/2 months since BMX and more than two months since the last known cancer removed.  The oncologist was more concerned with healing taking place before starting chemotherapy.  Any thoughts?

    Has anyone had a "wardrobe malfunction" yet with a "chicken cutlet"?  I bent over in my kitchen and it fell right out the top of my shirt.  Made a splat sound on the floor!  I had to laugh, but I have been a lot more careful what I wear in public to keep it where it belongs!

    Chin up!

    Kathie

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  • charlottesmama
    charlottesmama Member Posts: 250
    edited February 2011

    Hi Everyone. Welcome Lisa, Goldibelle and Mary! Hey Laura~ Your hair cut is very cute! Or is that a wig? Wink

    Thank you for all the thoughtful replies re: the tough weekend with my daughter. We got through it. It's hard to find ways to keep her entertained in the winter. There will be more days like those to come. *sigh*

    I start chemo tomorrow (A/C) and am already ratcheting up the anxiety. Can I have a Xanax and a beer? PLEEEEEEASE???

    To the Ladies Who Have Gone Before (LWHGB): Did you go home after your first treatment and just crash? Or were you able to function fairly well for the rest of the day, amybe even the next day? I guess I'll return for a Neulastin shot on Wednesday. Can I drive myself to that? Maybe I'll have my mom drive just in case.

    And, lovely LWHGB, what about food and how things taste? I have to admit, I'm worried about that one, since I'm all about the food (pastry cook, here). I expect I'll be eating a lot of bland crap for a while, if I have any apetite at all. I loaded up on yogurt, crackers, nuts, brown rice, prune juice and pears. Got a Brita water pitcher and am determined to drink 3 full pitchers a day.

    Off to therapist shortly. I'll go back and re-read previous posts.

    Cheers,

    Michelle 

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  • charlottesmama
    charlottesmama Member Posts: 250
    edited February 2011

     Here's my girl brushing a horse last summer. Just thought I'd give you all a visual. Laughing

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  • NJvictoria
    NJvictoria Member Posts: 119
    edited February 2011

    Very pretty little girl, Michelle! :)

    Vikki

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  • crog234
    crog234 Member Posts: 801
    edited February 2011

    Michelle   When I had my first chemo last tuesday I went home and was just fine that day and the next day.  I had my Nuelesta shot the same day as there was going to be a big snowstorm the next day and they were going to be closed.  It was the third day that I started feeling lightheadeness but I was still hungry and have had no problem with eating.  I would have to say that today some food is tasting different.  I go tomorrow for my blood counts.    Will be thinking of you tomorrow as you get your treatment. 

    Cindy

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  • JeanH
    JeanH Member Posts: 281
    edited February 2011

    Hey ladies,



    Michelle,



    I went home and rested after first infusion, tired but not bad. Extremely sensitive to smells for the first couple of days then not a big issue. First night a chicken soup hit the spot. It was a chickeny lighter version of pasta faioli(?) that our local pizza place makes and my sisters favorite comfort food so that is what she brought, with a backmup of plainer chicken noodle. I had a mild headache and slight queeziness but functioning. Tylenol and soup helped. I also suggest bringing snacks with you, for me it turned out to be a much longer day than I expected. Long wait between doc and infusion. I needed the saltines on the way home to counter the smells. Also had figs, carrot and cereal bar and Ginger tea.....next day ok again with headache and queey in am but not terrible. Afternoon ok.

    I think you have a good selection of foods...i would add some soups. Surprising to me I have absolutely no chocolate desire....mjor change but heal tier for the time being, the other thing I noticed was I felt wobbly legged...how's that for a medical term... My mom added ensure to the stock pile and I have been using that as well.I have found better to eat small snacks in beginning so your snot empty.



    Myninsurance allows me to self inject the Neaulasta so I did at home, no immediate issues but I would have someone drive for the first one.



    I am not having a problem with tastes, thing taste normal :)



    Your daughter is beautiful.

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  • JeanH
    JeanH Member Posts: 281
    edited February 2011

    Ok part 2.

    Kathie, I had rx from my onc visit that were filled at pharmacy at the cancer center and I picked up the day of first infusion. My neulast shots are sent home from the insurance plan...each none does that differently so the cancer center does wht is needed. I think the healing is the most critical part. They want you pretty healed before they start chemo.



    Gold belle, I am doing EC instead of AC for muntjac round due to the shortage. No difference in functionality or side effects per onc. Chemo nurse say just longer to inject into the port A is 3 Ewas more like 6-7( really did not want to count.) but since all going to same shunt not really a problem.( I don't have a port, they prefer to try without first.



    Lisa glad the port surgery went ok. I think it makes it easier especially if veins are hard to prick.



    We are all different doing different chemise but is is deftly a sisterhood....and it absolutely helps to have a place to share with so many wonderful women that get it... I followed the January group for the entire time I was waiting to get scheduled and it has definitely helped me be prepared.



    I actually went to work today, in a little late and not a full day but worked out.0 pm actually fell better than am...had my handy snack bag too. Feels like pregnancy at some points....



    Hang in there girls. Michelle good luck tomorrow...try and relax tonight...drink lots of water and if you don't have a port you want warm hands when they start the IV - it makes it easier.



    Jean



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  • JeanH
    JeanH Member Posts: 281
    edited February 2011

    Mary,

    I am dreaming of warm sunny places with all the snow andice we have here! More on the way .



    Jean

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  • mamaoftwo
    mamaoftwo Member Posts: 267
    edited February 2011

    JeanH, Cindy and everyone else who started this week - keep us posted on how you're doing.  I'm glad to hear that no one has had any major side effects yet.  keeping my fingers crossed for the rest of us.

    Michelle - will be thinking of you this week as you get started.  Stay strong and don't worry - I hope you sail through is.  (Yes, that is my "real" hair - the pic is 5 years old.  Actually I still have my real hair for two more weeks... already starting to miss it).

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  • charlottesmama
    charlottesmama Member Posts: 250
    edited February 2011

    Well ladies, a couple of Senakot (spaced a few hours apart) a few huge glasses of water (not enough, I know), a Xanax (to stave off the inevitable 3 AM panic attack) and a glass of wine. I hope I don't crap my pants in the night!

    My house is in its usual state of disarray, but reminded myself I'm not off to the gallows. The messes and laundry will still be there when I get home tomorrow. I let my kid sleep where she wanted tonight--not a battle worth fighting. She's snuggled in my bed where I will be VERY soon. 

    I tossed a few things in a bag for tomorrow. Not going to worry about clothes or even a shower! Well, I WILL wear clothes, just not fussing over it (my sister thinks I should wear yoga pants. Doubt they look cool with my cancer-ass kicking Doc Martens!). I will just don the usual jeans, black t-shirt and boots. Spike up the do, and I'm good to go. I'll pack a snack bag for me when I pack Charlotte's. 

    Off to bed now. Will report tomorrow afternoon depending on how I feel.

    Sweet dreams!

    Michelle 

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  • charlottesmama
    charlottesmama Member Posts: 250
    edited February 2011

    BTW~ I don't even OWN Yoga pants and find the whole concept ridiculous. Also, my chemo bag is a Hello Kitty! bag.

    Laughing 

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  • bdavis
    bdavis Member Posts: 6,201
    edited February 2011

    about hair...I JUST went thru the losing the hair thing... My plan was keep my hair until I started to lose it... just something I needed to do... and it started last Tuesday, as I brushed it... gently, it shed about 200 hairs that day... and I have (had) tons of hair, so no noticeble effect.

    Then more came out Wednesday, but by Thursday morning, it had matted. I think the hair fell out and got matted into the existing hair... there is no way I could have brushed it, so I pinned it up and went to work.

    Thursday night I cut it (after a good shampoo) to 3/4 inch, but it continued to shed and even tho it was less messy (long sheddy hair if very messy), 3/4 inch hair is also messy... so Friday am I shaved it to 1/8 inch and then headed to my wig boutique for some final trimming (shaping, sizing etc)...

    I have found that I went into the wig thing thinking I would wear it ALL day long... but I have generally found that once home for the evening a scarf is more comfortable and it is kind of hot (so a wig liner has helped a lot there)... I also bought a second cheaper short wig, thinking I'd wear it golfing or to the beach (going to St John in March), but now not so sure... may sport the scarves then.  My wig looks great and Iwork in a school, so I needed normalcy and today I wore it to work for the first time, and it was fine... a couple of kids said "I like your hair" or "Is your hair different?" I just say thanks or yes, its straighter (I normally have ringlet hair, but can and do oftern iron it, so I can go both ways normally)... Faculty who know just gave the thumbs up!! Easier than I thought it would be... PHEW.

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  • Salma1971
    Salma1971 Member Posts: 42
    edited February 2011

    Beautiful daughter Michelle!!! --- It's not easy, but I am sure you have rewarding moments, just as tthis one!! Good bless her... and good luck with your first session...

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  • NJvictoria
    NJvictoria Member Posts: 119
    edited February 2011

    Hi Michelle,

    You are so right in choosing which battles you want to fight with children! It took me a while to understand that concept. Children seem to be able to sleep just about anywhere, and if they want to sleep on the couch or the floor and I'm so tired that I don't want to fight, then that's where they're sleeping. 

    I'm not a yoga pants kind of wearing person either, but check out Athleta. They have a really cute legging with built in skirt that I really love! It looks cool with whatever you want to wear it with! Boots, flats, etc. :)

    Hope all goes well today! By the way, I love Hello Kitty!

    Vikki

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  • safari94
    safari94 Member Posts: 19
    edited February 2011

    Hey ladies!

    Hate to say it but had a TERRIBLE day yesterday and through the night last night. I thought I was going to have to go to emergency as my temp was over 102.  Just a miserable day with stomach pains, aching and fever - flu-like symptoms.  Weird cause my treatment was last Thurs and that day and Friday when I got the injection, I was fine.  Sat and Sun I  was just drained and couldn't really eat anything.  So the 4th day after kicked my butt!! I made it through the night and am chugging ORANGE Gatorade! Yes - tastes great cold!  Also, my boyfriend was determined for me to eat Miso soup last night as it is wonderful for you! It tasted AWESOME and I hadn't even had it before! Fluids fluids fluids today and fingers crossed that was the worst ;)

    Finally ladies - get your RX filled prior (just in case)! On a positive note again - NO mouth sores! Although I have been rinsing with baking soda, H2O and salt like a madwoman!

    Best of luck and hang in there gals! 

    xoxo Mary

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  • Melanie_Ann
    Melanie_Ann Member Posts: 414
    edited February 2011

    Hello everyone,

    I saw this post and wanted to reply. I started chemo on February 1st. It's nice to have a group of people going through it at the exact same time. I'm getting TAC. 

    I think I've had about every side effect under the sun. My Dr. told me I would feel fine for 2 days before I started to notice anything. That definately did not happen. I ended up feeling bad 2 hours after infusion. I ended up in the ER with slow heart rate and chest pain. Everything checked out ok, but next time they're going to give me Benadryl before the infusion. I also experienced the flu like symptoms. I was barely able to get up on day 3 after treatment. But now it's been a week and I'm pretty much back to my normal self. 1 down, 5 more to go! 

    I also do not have mouth sores! I had ice in my mouth for the infusion. But I have noticed major changes in my taste.  My hair is still hanging around. I got it cut really short and used my hair for an "underhair." I haven't recieved it yet, but hopefully I will before it all falls out. 

    Another side effect that I was not expecting was inner ear pain. Did anyone else experience this?

    Melanie

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  • Melanie_Ann
    Melanie_Ann Member Posts: 414
    edited February 2011

    SpecialK- I just read your post after I posted mine. I'm doing the hats with hair thing too! I can't wait for mine to come in!

    Also, my doctor gave me Xanax too before chemo, but I didn't take any and still haven't yet. I was also prescribed steriods to take the day before I started. And before I left my first chemo appointment, they gave me a prescription for Phenergen. Other than that, I don't think I have anything else. 

    I know that every doctor is different. Mine said "cancer is not an emergency." We do not need to do emergency surgery. But listening to your timeline, mine has gone much quicker. I was diagnosed Dec 1, 2010, Surgery on the 30th, and started chemo February 1st. I'm young though-26. So I'm not sure if that has something to do with it...

    Melanie

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited February 2011

    Hi Ladies,

    Safari - sorry you were not feeling well - I think your protocal is same as mine, we have very similar stats.  I am a FL girl as well.

    Melanie - is your underhair coming from Tampa?  I just had my hair cut off last Thurs.  I look like Suze Orman now!  I am here in Tampa so I considered driving my hair over there.  I need to call them.

    On the med front - my concern was that if there was something I was supposed to take before I go next week I don't have it.  They have told me that it will be a 5 and 1/2 hr. appt. so they may pre-med me while I am there.  My timeline is obscured by the five, count 'em, five surgeries I have had since 11/1/10.  The onc is pretty relaxed about it so I guess I will be too. 

    I have been reading the TCH thread - scary stuff. I want to be informed but not panic stricken.   Here is the topper for today - last week I had to have some spots biopsied on my shins and back before I start chemo, because I can't do it during.  Just got those results by certified letter, and even though I knew they would be skin cancers (harmless basal cells) I was bummed reading that letter.  Tired of that C-word.

    Oh well.

    Kathie

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  • EmilyInOntario
    EmilyInOntario Member Posts: 626
    edited February 2011

    Hi Ladies....I am a few days ahead of some of you ( first chemo was Jan 28) and wanted to tell you it really does get better. By day 9 I was feeling almost normal and now day 11 I feel like my old self, just a bit tired. My cancer nurse told me yesterday that I probably felt so dreadful Day 4 and 5 due to coming off the Decadron . I had that the first 3 days. Although I am nervous now about Round 2, knowing that I could feel normal for two weeks of the 3 week cycle helps. Also since it has taken them 2 months to determine if I had bone mets and I found out yesterday my bone biopsy was negative for cancer my spirits have certainly lifted. But that ordeal is a whole other story..

    Thinking of all of you and hoping for minimal SE's...

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  • Mimidi
    Mimidi Member Posts: 231
    edited February 2011

    I started chem the last of January.  I hope you will let me join your group.  I was diagnosed with IDC in November, 2010.  Mastectomy and resconstructive  surgery within the next two weeks.  Question my decison to do this for a couple of weeks after surgery but so happy now that I had this done.  I also had a port placed for the checmo.  Another good thing.

    I am 64.  A wife, mother, grandmother, daughter, and sister.   No history of breast cancer.  I lost all my hair last week.  I am wearing caps some.  Honestly I hate to wear anything on my head.  I don't know if I will ever wear my wig unless I have to.

    I am trying to get all my thoughts together so I can do posts that make sense.  I find that I ramble a these days.

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  • SeaReb
    SeaReb Member Posts: 1
    edited February 2011

    Hello All:

     I started my spiral down the rabbit hole in September 2010. I've been through AC and just had my second of 12 Taxol treatments. I start radiation therapy once the Taxol's done.

     At the risk of sounding self-promoting (which I'm not trying to do), I've found writing a blog has been helpful. It's my way to at least attempting to describe what I'm going through, and to articulate the more bizarre aspects of diagnosis and treatment, including surgery.

     I don't have many people following my blog, and it's not my intent to have lots of readers. The intent is to write so I feel better about my treatment. It truly has helped me, and I recognize that for others, there will be different ways.

     Taxol's kicking my butt. I'm sick of being bald. I can barely keep on top of my meds. I'm missing days at work. I'm so tired that I can't exercise, so I'm gaining weight. There's plenty of fodder to write about.

    Wishing the very best to all of you,

    Rebecca

    http://chemotransit.blogspot.com/

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  • charlottesmama
    charlottesmama Member Posts: 250
    edited February 2011

    Heloo my bosom buddies. I'm sitting in the chemo chair, still waiting. Seems as if my port is blocked and the nurse is trying to clear it with some sort of drug. She had to re-install the needle. UGH. Hurry up and WAIIIITTTT!!!! Glad I brought the computer with me.

    Well, some changes. I'm getting Emend in my IV, so I didn't need those 3 pills I filled the prescription for. Luckily my co-pay was only $6. It's expensive stuff. A shame to waste it. Also will get Decadron for 3 days after, like Emily.

    Emily~ wonder if they can ease us OFF the Decadron. I'll be taking 2 tomorrow, then 4 THursday and 4 Friday. Is that what your schedule was?

    I took a couple of Senakot yesterday, and a couple today. I woke up in the night with a mild gut cramp like when you have the trots. Things moved right along this morning. I'm drinking scads of water. Just ate 1/2 a turkey sandwich. Hope I don't regret it. Took a Prevacid just in case. 

    Been reading Kris Carr's "Crazy Sexy Cancer", and am liking it so far. Easy reading. The girlie antidote to Susan Love's book.

    So far in the ROC (regional Oncology Center) today: a prisoner in cuffs and leg chains, an oozing cup of pink liquid on the counter in the exam room, and a near resperatory failure (not me). SHeesh! 

    Later, ladies.

    Michelle 

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