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March 2011 chemo-lounge

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Comments

  • PennyCookson
    PennyCookson Member Posts: 356

    Day 6 and starting to feel better - yeah, today I am an IT Consultant again instead of a cancer patient. Not sure about makeup but I ordered a care pack from http://www.alra.com/product.html for deoderant and skin cream, will be good during radio too.  You can swim with the port once the skin heals.  I am really happy to have the port, I am also a big lady with small veins, and the port takes away the stress. 

  • migallen
    migallen Member Posts: 46

    I've also started to purchase organic products.  I go to whole foods where they have a large selection of organic hair color, burts bees ( i bought some shampoo today), organic body wash even dandruff shampoo.  It is expensive, but I'm changing over slowly but surely.  I'm trying to change out the foods too so that the rest of the family can't tell the difference.

    Silia, you worked 8 hours after your first treatment? I'm just wondering  because i have to go back to work 5 days after my first treatment and trying to figure out how I'm going to feel.

    Hi Maxine, I haven't had the dexascan yet, but I know I have to have one.  I have 5 appts this week, it's insane.

    hugs to all of you,

    Min

  • lilylady
    lilylady Member Posts: 478

      Are you allowed to drive yourself to and from chemo? Anybody doing that?  Or is it like outpatient stuff where they insist someone be there?

  • Kymn
    Kymn Member Posts: 887

    Hi huskerkkc I just noticed you are TNBC like me have you started chemo yet? Are you getting FEC-D. I found another website stricly for triple neg they have lots of information on it not quite as chatty as our groups here though :). I love the women on this board. Its called tnbcfoundation.org you might want to check it out just for the information part of it. anyhow hope your all having a nice evening.

    Kymn

  • PennyCookson
    PennyCookson Member Posts: 356

    migallen - I could work on day 2, but would have had trouble days  3-5.  I am on TAC though and I think the Taxane kicks in at day 4-5.

    You might be fine to work after 5 days, but don't be too hard on yourself.

  • Kymn
    Kymn Member Posts: 887

    Penny thanks for the lyrics i love it

  • divinemrsm
    divinemrsm Member Posts: 5,996

    Maxine,

    The book "Anticancer" currently a best seller, would be able to help you understand how changes in eating, dealing with stress and other lifestyle changes (like exercising) and going organic when possible can help in our journey back to health.  I've learned Burts Bees has lots of the good stuff we're looking for in terms of natural ingredients, ect.  You can Google Burts Bees and read up on their product information.  I will more than likely purchase more of their products when needed.

    Thanks for the info on Aveda products, looks like a store in a Pittsburgh mall I occasionally shop carries their products.  

  • mdg
    mdg Member Posts: 1,468

    About the port, anyone else's doc's office won't do blood draws from the port?  I thought getting the port would allow me to do that and then I went in on my first chemo day and the tech refused to do the blood draw from the port.  I lost it and got mad and said "then what the heck to I have a port for when I only have 4 chemo's?"  She said it can increase the chance of infection the more they access the port...blah, blah, blah.  I was pissed....now I have weekly blood draws from my arm and chemo every 3 weeks in the port...whatever.  Just curious if my doc's office is really strict and conservative on this...

    As far as deodorents...anyone find anything aluminum free and natural that works well?  I ordered Bubble & Bee's deodorant and it's OK but  I could use something stronger for working out.....my sister tried most that were available from Whole Foods but none work well. The Bubble and Bee is the best we can find so far.  Also about hand lotion...I have horribly dry hands and the Kiss The Face brand and Burt's Bee's brand just aren't cutting it.  Anything else organic or natural work well for dry hands???  My hands are cracking....

  • mdg
    mdg Member Posts: 1,468

    Another make up brand people talk about is Bare Esceuntials.  They are in our local mall. They are also all natural..not organic though.  But all mineral based from what I read.  FYI if that helps anyone.  I am still searching for better make up.  WHat I have now just doesn't stay on well and look like my old make up (you know, the real stuff....that looks good but is bad for you). 

  • divinemrsm
    divinemrsm Member Posts: 5,996

    I have heard of the brand Tom's Deodorant, which is also sold at Walmart and Krogers, supposed to be all natural.  Have not tried it so cannot say how effective it is. Of course, a deodorant may keep you from smelling, but it takes an antiperspirant to help keep your from sweating.  

    One of the first things I did since finding a lump in my breast is stop wearing an underwire bra.  Not that I read that anywhere.  But it was something my gut was telling me: stop. 

  • PennyCookson
    PennyCookson Member Posts: 356

    The deoderant I got from http://www.alra.com/product.html is aluminium free and works quite well.  i will also end up having blood takes from veins - I don't think its anything to do with risking infection in the port - its cause they don't know how to use it.  To my mind its much more of an infection risk digging around trying to find veins.  For hand lotion I am just going with Johnson Sorbolene and Glycerol - seems to work as well as anything.

    I am using biotene mouthwash and so far so good, but a friend who had this reckons when her mouth got really bad the only thing that worked was Myrrh (yeah right the baby Jesus stuff).  I have bought some Myrrh essential oil just in case.  The nurse also reckons to put Vegemite on mouth ulcers as its high in Vit B, - you guys don't have that do you - but I guess you marmite or something.

    Thank god we live in 1st world countries - can you imagine dealing with this in the 3rd world.

  • Mauimama
    Mauimama Member Posts: 16

    Silia,

    I just had my first treatment this morning and it all went well...except the chemo nurse had a hard time getting the needle in my veins...tried 2xs, couldn't do it, called another nurse over and she did it instantly.  After that, it was smooth sailing.  I know the SEs haven't kicked in yet, but as I sit here typing this, with ALL of the chemicals in my body, I feel perfectly fine.  Strange, eh?

    Anyway, I wanted to comment on the Belleruth Naperstek CD...a dear friend of mine in LA sent me the CD and I listened to it this morning...it's powerful beyond words and so deep and moving...it made me cry...my daughter sat and held my hand while I cried and the release of emotions felt sooo good....it's an amazing CD of affirmations that takes you some very deep places but you feel such a sense of calm, and peace and healing and support from it all....great thing to listen to while you're sittin' in that chair.  I highly recommend it to everyone, and glad you mentioned it in  your post....

     Hoping in 3 days I'll be managing my SEs as well are you are~  Take care and keep the faith!

    Aloha~

  • Huskerkkc
    Huskerkkc Member Posts: 471

    Kymn, 

    I have not seen that site but will check it out. I have not started chemo yet-am getting the port placed Monday. Still working out when I will start-either the 25th or the 31st. My mom is having surgery the 24th and I really want to be there. Onc isn't crazy about waiting but says it's up to me. I am eligible for a clinical trial-if eligible (have to do blood work and echo-cardiogram first) then I will have Cytoxan and Taxol DD every two weeks for six treatments. If I am ineligible, I will get Adriamycin (sp?) and Cytoxan for 4 treatments and then Taxol for 4 treatments.

    MDG, I am getting my port next Monday and I will be so PISSED if I can't get blood work via the port! I'm with you! What is the point? I have terrible veins anyway (8 sticks prior to my lumpectomy, two different nurses, blew a vein, it was AWFUL!) and that should be a benefit. SIGH. I see my family doctor tomorrow so I will definitely ask when I'm there. I'll let you know.  

  • pejkug3
    pejkug3 Member Posts: 277

    Just an FYI - I've heard that lab tech aren't qualified to do blood draws from the port, but nurses can.

  • mdg
    mdg Member Posts: 1,468

    Hey ladies....the bone pain hit from the neulasta shot at 1am this morning.  What joy....it's shooting, sharp and achy all at once and is in my saccrum, hips and upper legs. I hope it goes away with some tylenol.....ick.  I am going to workout and hope it just subsides.  I feel like every day is like spinning the roulette wheel.....what symptom is going to come up today?  Well the symptom of the day is bone pain....let's see what tomorrow brings...I hope you are all doing well.

    Silia:  glad you got through #1.  I hope you are SE free..... :)

  • MIchelle67
    MIchelle67 Member Posts: 42

    Kymn - I'm also a triple neg girl. The TNBCfoundation website is good and the thread here for TNs is great as well. When I was first dx, this bit of my info scared me more than anything, but I've learned over the past few months that it shouldn't necessarily be so terrifying. Many young women are TNs (you and I are about the same age) and apparently chemo really works well on it, so that can help get through the down days of treatment. Welcome, even though I know you'd rather not be a member.

    Chemo report: I'm on day 5 post first tx (infusion 3/3) and the bone pain that kicked in on Saturday finally subsided yesterday. I actually had a somewhat normal day, although I still tire out easily, and went to my local American Cancer Society office's Look Good Feel Better program. There were only 4 women there - me and 3 others - but it was the first time since I was dx back on Nov. 30th that I'd actually met another woman, face to face, who also has bc.

    The program was wonderful in terms of the social experience (I already know a lot about makeup) - two of the ladies had already been doing chemo for a while and confirmed a lot of what we talk about here. They were much older than me and managing well, which made me feel strong.

    Then, I was able to help the other woman who had just had surgery and not yet started chemo. She seemed afraid and I talked with her since we were sitting next to each other. I think I was able to put her at ease a little bit. I was glad to do that since I've been so grateful through all this for the generous women - on this website - who've done the same for me.

    We need to stick together and form our own life raft of strong bodies in this awful storm - we can do it, and one day soon wake up on a pretty beach somewhere and this will be behind us. I imagine a private island with gorgeous cabanas, where you can eat all you want with no consequence, and every night there's a big dance party, with cocktails of course. Smile

  • carberry
    carberry Member Posts: 997

    Hi everyone,  I dont really qualify to be here,  am 2 weeks past last chemo, 6 rounds of TCH, butjust wanted to give some words of encouragement.  I had very little side effects till the 3rd round then hair started falling out, bld counts plummeted, and many bothersome side effects.  All of these ARE manageable!  I worked during the treatments, got infused on Fri and had the weekend to rest.  Didnt start to feel icky till 3days after treatment, usually coming down from steroid (they tapered my steroid a few extra days to help with that)  Remember,if you side effects you cant manage..tell someone..they can help you in a variety of ways. I had my moments when I became a crying, whiny, baby, but we are all entitled to those days, sometimes its hard to remember that this poison they are feeding us is gioing to save our lives!  Good luck to all, you WILL get through this.

  • Colodisneylover
    Colodisneylover Member Posts: 183

    Lillylady-My onc said they would like me to have someone with me at my first treatment and see how it goes, but wouldn't require anyone to drive me to/from the rest of the treatments if I do ok on the first.

  • divinemrsm
    divinemrsm Member Posts: 5,996

    I drive an hour for my chem appt.  The onc said have someone drive me to and from.  Next day, it's an hour drive back for the Neulasta shot. They said I could drive myself but my sister will take me.  I prefer that, as I don't know how I'm going to feel.  Would rather be safe that sorry.  People are wanting to help, and I think asking someone every several weeks for a ride is not asking too much. At some point we have to realize we can't and shouldn't do it all.

  • divinemrsm
    divinemrsm Member Posts: 5,996

    I also meant to add, carberry, I always love when someone just out of chemo treatments, or a few months finished with them all pops in an offers encouragement.  It means a lot and always makes me feel better.  God bless.

  • supersally
    supersally Member Posts: 158

    I got my start date, 3/17.  Happy St. Patrick's Day to me I guess.  Hopefully I can wear my green that day and drink green water instead of clear - bleh.  Wish it was green beer!

    Glad to hear all of you are doing so well after 1,2, or more rounds.  That helps settle me down about it.  I'm going to think about what supplies I need in a couple of days.  I have my port surgery Monday, so not much time next week. 

    I plan on returning to work on Monday, 3/21, after my first chemo on Thursday, 3/17.  Is that do-able?  I will be doing taxotere and cytoxan four times. 

    Have a great day!

  • Kymn
    Kymn Member Posts: 887
    Hi supersally I am starting the same day as you whoo hooo hey. Maybe they will put green dye in our chemo drip Smile. I dont know what I need for supplies havenet even thought of it guess I better check out a thread for that Im sure there is one. I was thinking of going back to work on the monday too but my boss knows I will playing it by ear seeing as I have heard on FEC-D day 5 can be the worst but who knows guess were about to find out. will be thinking of you are you in the am? I am start first thing 8:30 . good luck to you
  • cellomomof5
    cellomomof5 Member Posts: 49

    Hello all - I just got my chemo orders, and will be joining your March cocktail club!

    I am participating in a clinical trial at Dana Farber in Boston, and will be receiving ACx4, then T-DM1 for a year, with rads sandwiched in the middle of the T-DM1 regimen.  They don't like to do ports at DF, so I guess my left arm will get a workout!

    First day of chemo is this Thursday, the 10th.  Wait a minute - that's only two days away! 

  • lilylady
    lilylady Member Posts: 478

      I thought I had bookmarked a list someone made up on what supplies to have on hand but now I can't find it. Seems like it listed brands that worked well and everything. Maybe someone else will have it or post where to find it.  Maybe I have pre-chemo brain? Is that better or worse than menopause brain?

  • supersally
    supersally Member Posts: 158

    Lilylady,

    My first chemo I will meet with my onco first then head down to the chemo lounge, so I'll be doing chemo about lunch time for you.  Think they'll be serving us corned beef/cabbage and shepard's pie to go with our green cockails?  Ha ha...

  • PennyCookson
    PennyCookson Member Posts: 356

    Good luck supersally and Kymn for St Patrick's day - do you both have a Leprechaun hat to wear into chemo?  Hang onto the fact that you will feel better after a few days.  I am now day 7 after the first one, and managed a good session with my trainer in the gym this morning.  I feel almost normal. (yes I know the hair loss etc is still to come, but I really don't care about that too much).  I would let someone else drive - my husband insists on coming with me each time which is lovely in someways and in others annoying as I can't ignore him and just read a book - but its good to know I can relax on the way home.

    Michelle67 - definitely see you on the island - its going to be a hell of a party.

    If you are shopping for supplies the Tips for Getting thru Chemo - and More Tips and a Shopping List threads were really useful

    http://community.breastcancer.org/forum/69/topic/706846 

  • mdg
    mdg Member Posts: 1,468

    So the bone pain is just crap....oh my God.  I did manage to get to the gym and do the elliptical for 45 minutes and it wasn't hurting, but as soon as I stopped moving...the pain was there again.  It has been uncomfortable most of the day but I just tried to keep moving as it doesn't help to sit or lay down..it just hurts.  Tylenol has not helped at all and that is what my doctor said to take. I took two hot baths and not much relief either.  Did anyone read how long the bone pain can last?  My hips are just aching horribly....it's like flu body ache in the entire hip/pelvis but more intense.  I want to boycott the neulasta shot next time....my doc will probably disagree though.  I hope you ladies don't experience this....I need something stronger than a pinot grigio to kick this...bring on the hard liquor...maybe a shot!

  • divinemrsm
    divinemrsm Member Posts: 5,996

    mdg, if it were me, I would contact my onc and ask for stronger meds than Tylenol.  My onc said to start with Tylenol (I am allergic to products like Advil & Aleve) but if it was ineffective, they would give me a Vicodan perscription.  The Tylenol helped, but I won't hesitate to request Vicodan if or when needed.  Some on the boards mention taking Claratin prior to the Neulasta shot, and claim it helps the bone pain.  The posts on "Tips for getting thru Chemo" and "More tips for getting thru chemo" discuss this, you might want to read up on it.

    P.S. Thanks for the admittance to your lounge! 

  • jenn_h
    jenn_h Member Posts: 21

    Just checking in to say hi!

    I will be having my mastectomy after chemo as well...I have BC bilaterally so both the girls are leaving me. I have a PICC line in my arm for my first four treatments, the next four will be by IV I guess. It's a pain b/c it can;t get wet so I have to wrap in Saran wrap for shower...showers just aren't as fun.

    I shaved the remainder of my hair on Sun., Monday my school had a hat/scarf day in my honor so I wasn't the only one! Today my sister shaved her head!! I am very lucky!

    Right now is day 5 after treatment #2, my worst problem right now is constipation...be prepared!

    Good luck everyone hitting the chair this week!! hugs and prayers to you all!

  • mdg
    mdg Member Posts: 1,468

    DivineMrsM;  I have so many pain meds and I hate taking them...they mess with my stomach and make me nauseated.  I am hoping it will go away.....I did take claritin today but it did not help...I guess next time I will take it in advance and hope it stops it from happening at all.  Maybe it  will work next time.  I just hope to sleep tonight.....tomorrow is a new day - that's what I keep saying!