August 2011 chemo, anyone w/ me?!

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  • michelleo13
    michelleo13 Member Posts: 342
    edited August 2011

    Doodlebug & Summergirl, don't feel too bad about the state of healthcare in Ireland. I don't think there are any plans to make the test available in Canada either. In my case, it likely wouldn't have made any difference. I would have probably needed chemo anyway due to the grade of my tumour and the two lymph nodes impacted so I'm not worrying about it too much.

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  • peachy-pie
    peachy-pie Member Posts: 201
    edited August 2011
    I see my oncologist tomorrow at 3pm for my game plan.   I made it through surgery & radiation with no worries,  so why am I so worked up about chemo?   I don't know why,  but I feel this is going to be the roughest part for me.  I've been out of work since June 25th,  and was released by my BS to go back to work Aug. 18th.   But worried I will not be able to work if I am sick and not feeling well.   I guess that's why I am dreading this phase.   Frown
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  • Grimbol
    Grimbol Member Posts: 326
    edited August 2011

    A Zombie with the flu, I love that, except you"re missing the bit about being run over by a truck/lorry first!!  I went back in today to get my port checked and they gave me a bag of fluid too, made a big difference! I thought I was doing well with the hydration bit but obviously not well enough.

    I am from the UK, have lived in SoCal for 26 years now.  My family is telling me it depends where you live in UK as to whether you can have Herceptin or not.  If you live in the wrong postcode (ZIP) it's not considered cost effective!!!!!

    Neither system is perfect, but for now I am glad I am here.

    Hope you all have a good restful night.

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  • Kasi
    Kasi Member Posts: 216
    edited August 2011

    Doodlebug & Summergirl - If it helps, my age (31), grade of my tumor (3), and 2 out of 5 positive lymph nodes solidified the fact that I was getting chemo. They said there was no point in me getting the test, chemo is what I would be getting. Michaela, I'm sorry you've been feeling so awful, I am glad you are feeling a bit better!

    And Summergirl, yes, the PS will go through the same incisions to exchange the turtle shells for the implants.

    Peachy-pie - I know what you mean. Chemo seems the suckiest to me. I breezed through surgery and I am not worried about radiation. It's the chemo. If it helps, I am working full time although they do let me work from home when I am not feeling up to snuff (2 days after chemo and one day last week when my white blood cell count was low and I didn't want to be around germs).

    Leighsa - Good luck on the oncotype test!!! 

    Dogmom - I'm sorry about Hercules. It sounds like he saved your life. Dogs are such angels. Mine are definitely helping me get through this. My girl, Pebbles, is my protector. She did not leave my side when I was laid up from surgery. One day I would definitely love to foster if me or my husband works from home. And definitely get a third dog. That's awesome that you have 3, vtEllen!!!

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  • Kasi
    Kasi Member Posts: 216
    edited August 2011

    Grimbol - I had fluids the next day, too. When I went in for my Neulasta, I had the "a truck just ran over me" look and they gave me another anti nausea and fluids for a couple hours and I did feel better, although I felt like I had been drinking a ton!

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  • vtellen
    vtellen Member Posts: 345
    edited August 2011

    It helps that my fiance's a vet. He had spayed Tally for the shelter, so that's how we discovered her, we weren't looking for other dogs, but..... She is adorable!

    So, folks, I kinda think the curls are on there way out a' here..... Other than that I am virtually SE free. .

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  • Kasi
    Kasi Member Posts: 216
    edited August 2011

    Ellen! Is it starting to come out? Are you 13 days out from you first treatment? I am 11 days out and waiting...so far nothing.

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  • summergirl1
    summergirl1 Member Posts: 182
    edited August 2011

    Michaela: yes it must have been that article my friend was talking about , but if it goes by tumor size i wouldnt stand a chance as my tumor was 5cm and I had 4 nodes affected so maybe thats another reason I was offered it, sorry to hear you havent felt well, I start on thursday and if my doc hadnt given me some valium today I would probably be climbing the wall right now haha , hopefully your SE;s will ease soon 

    Kasi ,Michello and leighsa thxs for making me feel better about the test,Im pretty sure now I would have probably needed chemo anyway 

    VTellen, glad you are doing well and dont have too manySE's  :) 

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  • Chrys23
    Chrys23 Member Posts: 291
    edited August 2011

    Evening -

    I went wig shopping with my sister, good friend and God-Niece; picked up 3 cute wigs! So excited. Also, my free scarf from http://www.goodwishesscarves.org/ came in the mail today. It is absolutely beautiful!! As a cancer patient, you can pick out one of their Good Wishes scarves. 

    My sister shaved her head down today really, really short in support of me and I took out all my extensions and cut my hair really short, about 1-2 inches long.   

    I feel achy and fluish today (Day 5 for me)-- tongue still feels weird and numb sometimes too. For those that aren't feeling well; rest -- I hope you feel better soon.

    Re: the Oncotype Test -- My Onc wasn't going to order it because I had positive lymph nodes, and chemo was a given -- but I wanted him to anyway as I was curious what my score would be. I ended up being a 16 (which is low from what my Onc has said).  I've read where women have high scores of 30 to 50 range.  Also, the test is VERY expensive; I am very thankful I have really good healthcare, as the test was almost $5K and my insurance paid it in full. Whew....

    The Oncotype is usually used in women who are NOT node-positive to see if chemo would benefit them or not.  For example, if there was NO lymph involvement, but the test was run on the tissue sample and the score was 30 or higher; they really would possibly benefit from chemo.  For me, I was node-positive and for node-positive, if your Oncotype score is 18 or above, of course you could benefit from chemo. I was only 2 points below at 16 -- but again, I wanted to do chemo as a preventative measure, since it had already traveled.  Frown

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  • 46MD
    46MD Member Posts: 25
    edited August 2011

    Hi all - checking in Day 5 after first AC. Neulesta stinnnnnngs! Next day had major bone/muscle pain, but it just made me feel like stretching, and moving. If I kept on the move, I felt better. Throat feels tight sometimes..no mouth sores yet! Constipation!!! Got it taken care of, but thats a real b*tch. Be careful drinking fluids with your meal. Let your digestive juices break down your food good. THEN drink like crazy all the other times. I feel minor flu-like symptoms, but so far, besides the constipation, its doable. Keeping fingers crossed it doesn't change too much.

    Thanks to all for sharing. I learn something everytime I get on here.

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  • Chrys23
    Chrys23 Member Posts: 291
    edited August 2011

    Ps...Doodlebug: I hope you feel better hon! Try to rest. I'm so flu-y right now that every spot in my whole  being hurts. Popped two Extra-Strength Tylenol to see if that helps. Just picking my head up is a chore! Feels like I have a whopping flu-bug.

    Surprised

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  • 46MD
    46MD Member Posts: 25
    edited August 2011

    Chrys23, let us know how the Tylenol helps. I have that all over body ache too, just not sure what to take for it (and actually tired of pill poppin) but need to sleep too! Good luck.

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  • Leighsa
    Leighsa Member Posts: 63
    edited August 2011

    My MO said the oncotype results are in three groups:

    Low risk 0-17 - chemo not usually recommended

    Intermediate risk 18-26 - weigh the risks vs benefits of chemo

    High risk above 26 - requires chemo



    Got a call from the lab today to let me know my sample was received last Friday and to make sure I wanted the test. Was told my insurance covers the test 100%. Results should be available next Monday. I told my MO if I needed chemo, I wanted to start ASAP because I go back to work (school nurse) the day afte Labor Day. He checked my veins and I don't need a port if I will be getting the 4 treatments over 12weeks. He said I could do chemo training in the morning and then have my first treatment that afternoon.



    For those that have started, is doing all that in one day doable? Hoping for low number, but want to be prepared.



    (((Hugs)))



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  • sandy115
    sandy115 Member Posts: 172
    edited August 2011

    Good Evening Everyone I had Chemo # 2 this morning Came home and slept all day woke up @ 9 pm staving good sign.I think It was the Emend for nausea that made me sleep did'nt have it 1st Chemo round had othere meds and I was nausea's for 3 days but did not sleep.So far feeling good Get Nuelasta shot tommorow did anyone take claritin and do you take it the day of shot or the day before.I asked my Dr about Octo type here in Canada and she said There was no point in me taking the test either grade tumor size and 1 node infected had to have Chemo.Talkinng about Fostering pets I fostered children for 18 years and ended up adopting 4 so ended up with 8 children altogther 4 Homemade and 4 born in the heart..Great job fostering the doggies as long as you dont adopt them all its hard to give them up.Lol

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  • vtellen
    vtellen Member Posts: 345
    edited August 2011

    Well, as to the hair loss question - You wouldn't know it to look at me- except that my hair is a mess because I'm afraid to touch it now! But, I started noticing over the past couple of days that my legs were staying smoother from one day to the next. Then, this morning, I had my ritual chin hair check (don't go spreading that little tidbit around, please, ha!) the little hairs just came right off w/ the merest pull. And, then the clincher - I had this annoying grey stright up curly guy right in front at my part, and I went to pull it, and it just came right out as well! And just lots of hair loose every time I touch it!

    And as you can see from the hour of this post, I am up and about and insomniac again.

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  • mommyx2
    mommyx2 Member Posts: 10
    edited August 2011

    Can I join your group? I start TCH chemo on Wednesday. I found a lump when I was 6 months pregnant, but OB thought it was just clogged milk ducts and would flush out when I started nursing. When it didn't, they sent me for a mammo/us and then biopsy which showed DCIS. I then went to a different surgeon who wanted a second biopsy of the lump and my lymph nodes, and those showed micro invasion and presence in the lymph node. I'm still in shock. They want to do chemo first and mastectomy second - anyone else having that? The reason they say is so they can watch the tumor shrink to know the chemo is working. I never in a million years would have thought the reason I would stop breastfeeding would be to start chemo treatments! But our sweet baby is thankfully doing great moving to the bottle and formula - weaning just in the last 4 days. She is 3 months old and I have a 2 1/2 year old son also. I'm 37. Thanks everyone for posting out here. It really helps alleviate the fear of the unknown to read about what everyone is experiencing. I'm dreading starting but am also ready to get on with it and get this thing out of me!

    Whitney

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  • Madismommy719
    Madismommy719 Member Posts: 781
    edited August 2011

    Welcome Whitney although I really wish you didn't have to join. I'm only 35...it's crazy right?? A friend of mine is doing chemo now to shrink her's (6+cm) and than she'll make her surgery decision depending on the outcome. She's 3 transfusions in (out of 6) and doing TCH....and her tumor has already shrunk half the size so it does work!!!! One day at a time right? We'll all get there.

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  • mommyx2
    mommyx2 Member Posts: 10
    edited August 2011

    Thanks madismommy - that's so good to hear! I feel so ill-prepared for chemo. I've been so busy with my little ones that I haven't bought anything to get ready for this - or maybe I'm still in denial! I read watermelon, green tea, colace ... any other suggestions on what to have on hand? Tomorrow is my last day before the poison. Oh, and anyone doing chemo without a port? I haven't got mine yet.

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  • Madismommy719
    Madismommy719 Member Posts: 781
    edited August 2011

    Someone else said ginger ale and crackers for any nausea...and lots of water.



    Im supposed to buy claritin over the counter to hopefully help with the neulasta shot. And that biotene mouthwash for keeping away mouth sores.



    And I also read chapstick is good to have, that your lips get really dry...

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  • pc711019
    pc711019 Member Posts: 2
    edited August 2011

    Hi, I am just starting chemo in August. My port  is scheduled to be placed on 8/16 and will start 4 cycles of TA on 8/25.  I was delayed due to an infection and expanders had to be removed 7/18 and it delayed my chemo. After the IV chemo I will take the Tamoxifen or some other drug to suppress hormones for 5 years.  I too just want to get this going and finish it.  I am a nurse and it is hard to be on the other side.  I was directed to this site by another post chemo surviver and she said it was a life saver to have support with others in the same treatment time.  I look forward to interacting with all. 

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  • meholly
    meholly Member Posts: 7
    edited August 2011

    Hi all, 

    Sorry that we all meet this way but this site has been helpful to poke around on.  I start chemo  friday and havent had my port placed yet either but they said they can do it without it the first time.

    I have read the chemo "shopping list" and got a bit overwhelmed so i got a few things and will hope i dont need all the stuff and will get it as i go. I can add it onto the back to school shopping i guess.

    I am 43 with and 8 year old and work in a restaurant.  So I was trying to pick the best day to start chemo this week as they told me i can't change it once i start.  I am hearing that the first 2 days are the good and the 3rd day is the worst so i will stick to Friday because my busy work time and family day is the weekend.  

    Thanks to all for the info and support.  

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  • Madismommy719
    Madismommy719 Member Posts: 781
    edited August 2011

    Welcome pc711019 and meholly....so sorry you had to find us under these circumstances though.



    Pc...best of luck today with the port placement, it's not too bad. And I'm being told it really makes it easier so we'll see. I start TAC x6 on 8/23.



    Meholly...that's the worst part about chemo for me (well, and the hair) is the unknown variables.... How I'll feel afterwards and on which days, which s/e's will be worse, etc.... I didn't really get a choice on my treatment day so that's nice you are able to choose Fridays. Do you have to get a booster shot the 2nd day than?

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  • vtellen
    vtellen Member Posts: 345
    edited August 2011

    I would add to your lists pre-chemo: ICE! But, I suppose I may be the only one w/ a unhooked up ice maker!  I use Senokot-s. I did get new toothbrushes,Biotene (original flavor - I like it, but Kasi was dissing it so maybe I'm wierd) Lots of stuff that you like to drink, but I would avoid really sweet stuff unless you're OK w/ watering it down.

    And I don't have a port, but am doing 4 treatments. Has anyone else been told to avoid having stuff done on the side where the node/nodes were removed?

    Also, my words of wisdom, stolen from someone else,Temporary and Forward. You will get some SEs, but, they seem to show up and move on. For me on days 4,5,6 I would not want to be working.

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  • Madismommy719
    Madismommy719 Member Posts: 781
    edited August 2011

    Ellen, no ice maker for me either....we always buy a bag every week.... What's Senekots?



    I had the axilliary node dissection on my left and was told no more use on that side....no BP checks, needlesticks, tattoos, finger pricks, etc.



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  • michelleo13
    michelleo13 Member Posts: 342
    edited August 2011

    Welcome Whitney, Pamela and meholly!

    Whitney, I don't have a port. I've never had a problem with my veins. However, last week when I went for my first AC treatment, it took three tries to get the darn IV in. We'll see what happens when I go back next week.

    vtEllen, yes I was told they shouldn't even draw blood on the side where the nodes were taken. I'm going to ask the ONC about that this week, though, as they only took 8 nodes and my arm is fully recovered. Between chemo and all the staging tests, my right arm is full of bruises. My husband said people will think I'm a junkie! Laughing

    For the first time today (day 8 post AC), I feel almost 100%. Got up early this morning and did a light yoga workout - first time since my dx. So far, I've had no bone pain from the Neulasta and didn't take any Claritin. Maybe I'll take advantage of this energy and go back-to-school shopping with my girls.

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  • michelleo13
    michelleo13 Member Posts: 342
    edited August 2011

    Senekot-S is a mild laxative with a stool softener. I also took it for the first few days and it helped ward off the dreaded constipation.

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  • Vivie
    Vivie Member Posts: 52
    edited August 2011

    Hello ladies!

     I'm back..got in from my first treatment an hour ago.Turns out I'll get the red devil for x4 , then the Taxotere for x4 and then , hormone therapy.Oooh well.I also was prescribed IV Zantac and other meds for minimal SE's.I did want to scream at the onco doctor , NO , not any stomach meds...but I kept my mouth shut...

     Guess that was a mistake.15 mins in the premed , I got REALLY dizzy and my pressure fell - I'm low pressure anyway, so not an ideal situation.another lady in the room seemed to have the same problem and groaned to lie down, and she got transferred to a bed...and promptly tossed her cookies.Since I suffer from dizzy spells and reflux even before my dx , I knew I had to stay upright and just ignore it best as I could,and once I got hooked up at the red devil it slowly went away.Treatment was pretty short , 45' mins , lucky me! Everyone else had to stay on longer! Got discharged and my dad drove me home...A little tired , but I've just gotten back from holidays on the boat  , so I don't know which is SE and which is just plain ol' tiredness.I did manage to eat and down  a LOT of water.Lemon/mustard delivery chicken , french fries and toast was ideal for me! 

     Let's hope to a free SE day , but staying in just in case for the next couple days...as for hair loss..not too fussed abt it , although my mother's still driving me crazy abt that..."buy a wig , buy a wig" she nags.I do NOT have the money for a wig , when they're 500€ apiece and insurance reimburses only 40% of the cost.

     if anyone wants to see pictures from Samothrace , feel free to pm me to give you my FB name and I'll add you.

     Hugs ! 

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  • Madismommy719
    Madismommy719 Member Posts: 781
    edited August 2011

    Thanks Michelle....I'm going to add that to my shopping list before next week. I dealt with the dreaded constipation enough after my BMX. ugh.



    Hope you continue to feel good today!!!! Yay!

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  • vtellen
    vtellen Member Posts: 345
    edited August 2011

    Yea! Michelle! Isn't it encouraging to feel like yourself again? I am using the analogy that treatments are like labor pains. You just have to hunker down to get through it, but then you get a little break between. I only had 1 node removed, and what do people do who have nodes taken from each side. I think it has to do w/ lymphedema. Which I haven't experienced, thank goodness.

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  • Grimbol
    Grimbol Member Posts: 326
    edited August 2011

    I only had one node removed but was told by the onc nurse not to have anything done on that arm for at least 2 years!

    I am still waiting for the Neulasta pain to go away, I had it on Friday!!  Didn't start Claritin until Saturday since my onc nurse hadn't heard of it, but once the pain set in I sent out for it and started it, but maybe I was just too late this time.

    I am using Biotene and think it's just fine, my husband used it and thought it was disgusting!! Must be a matter of taste!

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