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March 2011 chemo-lounge

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Comments

  • Anniemomofthree
    Anniemomofthree Member Posts: 370

    Careful on the constipation...you can (and many will) have diarrhea.  You need to gauge yourself daily.  Get immodium AND stool softeners.  You may need both.  I did for chemo #1.  

    Good luck! 

  • lilylady
    lilylady Member Posts: 478

     I just finished reading the entire March lounge. I am not an "official" chemo girl yet but since it will happen before the month is out I thought I would check in. Not a drinker so mix me something fruity with an umbrella-I'm ready to join the party!  These sound like my kind of people.

      I have IDC and will start wih neoadjuvant chemo to try to shrink the bomb in my boob down to a manageable size. Looks like evreyone else so far has had their surgery first. I haven't got my receptor status yet and they haven't come right out and told me the actual size of it. All I have is that is lemon sized and attached to the chest wall. Ialso don't know if they are going to get any nodes out before the chemo starts. Seems to be 2 schools of thought on that. Going for a CAT scan, bone scan and another MRI this week. They are also going to install the port. When the pathology people get done I guess I will find out what I will be getting.

      Has anyone done the dense dosing? I am going to drop back into Jan/Feb  chemo threadsand  see if anbody is talking about that.. I read some articles on that today. Sounds tough but a way shorter time. I have no idea ifi am even a candidate for it.

    I will drop back in when i know more.

      

  • ckelly4181
    ckelly4181 Member Posts: 5

    The tampon thing is a little confusing, but I went to "Chemo Class" the other day, aparently that a prereq. out here, but they gave me a giant list of don't do's while going through chemo and tampons was a no no.  I think it has something to do with the toxicity level.  

     I know that it's unlikely that we will need them during the next few months, but I was told that if I do get my period I have to use pads :(~

    It probably best to just ask your onco and see what they prefer.

    I'm thrilled to hear that everyone is doing so well after their first treatments. 

    bikenyc:  I don't know how you kept your cool through all that, I would have been biting peoples heads off.  You deserve a serious gold star or sainthood for that one.  They set the bar pretty high on your first day, so let's hope that it's all down hill from here.  

  • EmilyInOntario
    EmilyInOntario Member Posts: 288

    I'll just echo what Annie said above to be careful you don't overdo the laxatives and stool softeners until you see which way you are going to go. I was told to expect diarrhea..but things went the other way but after some prune juice and senekot got straightened out quickly. Now I find things are working a little too well and I don't want to be too far from the BR..not quite diarrhea though. I was told NOT to use immodium so check that out with your oncologist. This has been my pattern through 2 rounds of chemo but everyone seems to react differently. 

  • jenn_h
    jenn_h Member Posts: 21

    Oh so glad to be able to run away here while my husband is going through he medical bills!!! Think maybe I need to go hide on the second floor!!

  • MIchelle67
    MIchelle67 Member Posts: 42

    Hi all,

    Just checking in for the first time since my tx #1 on 3/3. The Benadryl is what kicked my butt during infusion - I'm sensitive to any "down" med - so I felt ok but out of it Thursday night when I got home.

    The first appt. took a long time, with labs and stuff, so hopefully next time won't be so long. I was there from noon to 5pm. I felt ok Friday and had to go back for my Neulasta to save a $700 co-pay.

    By yesterday, feeling worn down quite a bit, weak and tired, but not sick to my stomach. In fact, I ate pretty well - some plain chicken with a veggie stir fry, and lots of water, juice and tea.  Zofran is my friend. lol

    Still drained today but better. I'm moving around more and feeling more awake and normal. 

    Does anyone know if chemo's cumulative? I mean, will it be thisway each time - since there's time to recover in between treatments - or does it build?

    I never asked my onc that question.

    Hope everyone's having a good Sunday. I'm dreaming of late summer and maybe a real cocktail...

  • christine47
    christine47 Member Posts: 846

    Michelle67,

    Sounds like things went well for you.  I am a Jan girl, but love to stop by the March lounge.  I have had 3 rounds of chemo, and feel like the 1st was the toughest, but everyone is different, and I still have 3 to go.  Everyone says the effects are cumulative, I am trying to take good care of myself, rest, etc between chemos.

    A real cocktail at the beach this summer is what I am dreaming of too.

  • Huskerkkc
    Huskerkkc Member Posts: 471

    Keep those warm beach images coming! WHile it is currenlty 43 degrees in Nebraska today, we have winter storm warnings posted (actually 2 storms possible), starting Monday morning, with 8-14 inches by Wednesday! ACK! Normally I love a snow day (I'm a school counselor) but we've missed so much that every new snow day means adding on another day somewhere else, usually the last day of school! 

    My chemo lounge drink is appletini and just thinking of that springy, green, Jolly Rancher color has transported me to....Belize, I think. For this afternoon. Looking for my suntan lotion and sunglasses as we speak Cool 

  • Mauimama
    Mauimama Member Posts: 16

     Hi Michell67~

    I just asked my oncology pharmacist that same question a couple of days ago.  He said with Taxotere the fatigue and neuropathy tend to get worse with each cycle.  However, he said he's seen many people on our cycle (Taxotere&Cytoxan X4) and on more intense regimens work fulltime during chemo.  So like Christine47 said, it's so different for everyone.  I start my first treatment tomorrow so I'll find out firsthand for myself....it is very helpful to read these posts, though, I've learned a lot from ALL of the women warriors who've posted....    How many cycles will you be on?  I'm guessing 4 -- 1 tx every 3 weeks, yes?

    Hope you enjoy your Sunday!!!

  • Huskerkkc
    Huskerkkc Member Posts: 471

    Is anybody doing Cytoxan and Taxol? (NOT Taxotere) If I agree to the trial on Monday, this will be my regimen, DD every two weeks for six cycles. 

  • mdg
    mdg Member Posts: 1,468

    Colodisneylover:  I started stool softeners a day after chemo.  Did no help me at all.  I also had the same issue post surgury.  I took stool softeners the evening of surgery and then a day later started laxatives and kept up on the stool softeners.  Unfortunately for me, neither worked.  A few days post op it was supposotories and an enema.  Everyone is different.  The funny thing is that I usually suffer from diarrhea (I have IBS) and never get contsipated.  I am shocked it was so bad.  Now that I know how my body responds, I will do laxitives and stool softeners the day of chemo and a few days after. 

    Lilylady:  Welcome to the lounge.  We can whip up an non-alcoholic fruffy drink just for you.  Let us know when you are starting and what chemo you will get.  I had surgery first....don't know about the chemo first.  Sorry I can't help with that.  Maybe some other ladies in the lounge can help?

    Ckelly:  I had my period on chemo day and a day or two after and did use tampons....oops!  No one said anything to me about this....I guess I won't have to worry about it much now anyway, right? 

    Michelle67:  Glad you are OK and got one chemo done!!  My doc says it is cumulative and that for many patients the treatments get harder.  I hope we all manage it fine.....I just want this over with! 

    So I am still doing OK after my 3/2 chemo.  I am just tired because I am not sleeping.  Oh how I wish for 1 good night's sleep......I have been hungry still!  What's up with the appetite???  I guess it's ok since I have lost 17 lbs since getting diagnosed anyway.  

    Good luck to our gals sitting up at the chemo bar this week!

  • migallen
    migallen Member Posts: 46

    Hi Maria,

    I take 1 mg of xanax each night and am able to sleep through the night, however, I haven't had my first treatment, maybe that will make a difference.  I'm like a reluctant child, I just don't want to do the chemo. wah, wah, wah. 

    Husker, I am going to do 4 tx of AC, followed by 12 weeks of taxol.  6 months of hell, I believe.

    always, min

  • PennyCookson
    PennyCookson Member Posts: 356

    Day 5 and not much energy - like having flu and a hangover (good thing I have alot of practise at having those).  I am also thinking next time I'll get in with the laxatives early - but its really hard to judge.

    They do say it is cummulative for lots of people - but that doesn't necesarily mean us lot, lets assume we will go from strength to strength - at least we know what we are up for now. One out of 6 down - I am determined to start feeling better from tomorrow - really need to go to back to work.

  • momand2kids
    momand2kids Member Posts: 118

    Greetings from the Feb 2009 Board-

    I just wanted to drip in and say YOU CAN DO THIS!!!  It will be challenging- but you totally have this.

    I just wanted you to know that my chemo ended about 2 years ago-- had lumpectomy, chemo and radiation---today I have a full head of hair and my regular chaotic life back..... this is such a short time in your life, although I know it does not feel like it right now.  But by September, you will have your life back, your hair will be growing back and you will feel better and better each day!!!!!

    Best of luck.......  

  • Kymn
    Kymn Member Posts: 887

    Hi ladies, I'm 41 and a mom of two,II will be joining your board looking forward to getting to know all of you. I start on the 17th feeling pretty nervous. I am doing FEC-D. 3 rounds of FEC (Flourouracil,Epirubicin,Cyclophosphamide) then 3 rounds of D (Docetaxel otherwise known as Taxotere). After that will be 5 weeks of radiation(25sessions in total). I too just want to get this started so it can be over. If I get to pic a name for my chemo I'll go with rye and diet lol.

    Hope you all had a nice weekend with some moments not consumed by Cancer thoughts

    Love and light from Canada

  • PennyCookson
    PennyCookson Member Posts: 356

    Huskerkkc - its gets to 43 deg here - but thats 43 Centigrade.  Pleasant 36 deg C here today, there is a breeze rolling in with the waves and the sand is too hot to walk on, You can all walk on my beach, you can go anywhere in your head after all, and I will stand and look over your snow covered hills.

    Hi Kymn - just been listening to one of Canada's best - big Leonard Cohen fan,
    "Ring the bells that still can ring
    Forget your perfect offering
    There is a crack - a crack in everything
    Thats how the light gets in"

     Keep letting the light in - this will be over before we know it and we will have our lives back , but better. (Geez I am sloppy today- must be the drugs)

  • mdg
    mdg Member Posts: 1,468

    Kymn:  Sorry you have to join us but glad you found us here in the lounge!  I am a mom of a 4 year old...45 years old.  I have made it through 1 chemo so far - pretty good.  Pull up a chair and order a drink.  The company is great here! 

  • maxineo
    maxineo Member Posts: 199

    It is so helpful to hear all of your first impressions of chemo.  I am SO much more nervous about chemo than the MX surgery.

    I am not getting a port at first. My onc suggested we try without and see how it goes...I'm a little nervous since I have only one arm to use (had axillary dissection on the left).

    Like many of you, I am nervous about the loss of energy. I am 38 and a mom to 2 daughters (7 & 8), and they like to be very active. I do appreciate hearing from those who are completely done and living their regular lives again. I look forward to being one of those!

    I had read about tampons, also no sushi! My dh and I had a huge sushi dinner last weekend to hold us over for many months! Aren't our periods supposed to stop, too?  My onc said that's a good thing, and if she had her way, she would want me to stay in menopause. What a crazy place this is to be.

    But glad to have all of you along.

  • Colodisneylover
    Colodisneylover Member Posts: 183

    MaxineO-My oncologist said the same thing. We'll try it in my veins first and then if that doesn't work, consider a port in my arm. I am crossing my fingers I don't have to get one.

    I went to the Look Good Feel Good class this morning. I was bummed that most of the samples I got had parabens and soy in them.  I asked the women conducting the class about it and they had never heard of BC patients not using products with soy in them. 

  • mdg
    mdg Member Posts: 1,468

    Colodisneylover: I was going to sign up for the Look Good Feel Good class but if the make up has parabens and soy...forget it.  That doesn't make sense at all!  I am still trying to find good make up to use.  I have some Physician's Formula Organic Wear and Aveda.  Still not liking it though...anyone find any GOOD make up that has no aluminum, sulfates, parabens???  I need more things to try.  

    My onc said I should just get a port....I didn't want one but she said taxotere is bad on the veins and it could be an issue...even with only 4 chemos she wanted me to have a port - I guess too because I had sentinel nodes out on both sides.   The port is not bad...fyi.  I got it in my arm and it's fine even with working out. 

  • migallen
    migallen Member Posts: 46

    ugh, I am so not looking forward to the port.  They are going to put it in my chest.  Ihope they don't pop my implant. lol.  Ihave to do a muga too tomorrow.  Is that painful? 

    How are you doing today Maria?

    min

  • divinemrsm
    divinemrsm Member Posts: 5,995

    I do not have a port, had one chemo treatment three weeks ago with another coming up on Wednesday.  Taxotere is one of the chemo meds I'm taking.  The IV was no problem for me, am hoping that continues.  My onc said she didn't think I'd have any problem.  Interesting how every onc has a different perspective.

    I've switched to Burt's Bees moisturizer, their product line is supposedly all organic with no parabens and such and easily found at Walmart and other places.  It'd be nice if they came out with a cosmetics line.

    Can anyone please tell me where to purchase Aveda products?

  • mdg
    mdg Member Posts: 1,468

    I purchased Aveda products at their store in my local mall.  I believe you can also order from their website.  I don't think other stores carry Aveda.

  • maxineo
    maxineo Member Posts: 199

    migallen: I had a muga last week. Not at all painful. One injection, sit 15 minutes, then injection of radioactive material. Then they took 3 exposures, 8 minutes each. Did you have a bone scan? The machine was very similar. You are not enclosed (like PET scan), so there isn't that claustrophobic feeling, but one image had the machine pretty close to my face.

    colodisneylover and TheDivineMrsM: why the avoidance of parabens and soy? I have heard conflicting info about soy, but I am very interested if anyone can tell me more about the soy and about the parabens (including what they are!) and aluminum and sulfates...

  • Kymn
    Kymn Member Posts: 887

    Hi Muga scan is not painful just a bit long. As for all natural face products you could loook into Arbouron. its expensive but very nice. I dont think I have to worry about soy though as I am TN. No one has mentioned anything to me anyhow.

  • christine47
    christine47 Member Posts: 846

    you can only get Aveda products in there stores or online.  They are very earth friendly and nature, I was a big fan prior to BC.  They have leave-in conditioners with color that will probably be great when we all start to grow back hair, but are not ready to color.  Everything is a bit pricey, but really lasts.

  • lilylady
    lilylady Member Posts: 478

      Hey can I have some Rum in my fruity umbrella drink please? I went today and had my elbow length hair cut off and donated it to Locks of Love. BYE BYE. I have worn ultra short hair before but it has been years ago. I went punk rock -totally spiked up and colored pink at the tips. Figured on losing it anyway so some other cancer person can wear it for me.

      I didn't realize the port thing was an option for most people. I am in the pool a couple times a week and wasn't sure if you can swim  with a port. I am seeing my second BS Wednesday then the onco right after-maybe I will bring that up to them. The port install has been scheduled but that doesn't mean I can't change that. They have already agreed neoadjuvant chemo for me. I will get the rest of my path report then-I decided I didn't want to hear it over the phone.

      I will probably be just under the deadline to be one of the cool March lounge ladies-but you already feel like the people I want to hang with.

  • Huskerkkc
    Huskerkkc Member Posts: 471

    Lilylady, 

    I will get my port next Monday by my BS. He said that I can swim with it, go in the ocean with it, even scuba dive with it! Not that I have any of those things scheduled but I would like to go to the ocean this summer when all this CRAP is over! Truly wish I could have squeezed a beach trip in prior, but that is not to be. I was going to request a port even if they didn't offer it because I have very small veins (strange, because I am not a small person!) When I had my lumpectomy it took the surgical nurses 8 sticks before they found a vein. By then I was a nervous wreck! My lab tech at my local hospital in my little town of 2800 finds my vein first time every time. I offered her an all-expenses paid trip if she would go with me anytime I needed blood work! It will be a god-send for me, because not only does the chemo go through there any blood draws for the next 6-9+ months will come from there. No more vein trauma. Be sure to ask both the BS and oc about it.  

  • Silia
    Silia Member Posts: 265

    I'm ready to take a nap but wanted to chime in with some random input:

    Lilylady - I started chemo on Friday and won't have my R mastectomy until afterwards (in 6 months) so you and I have a similar situation...  FYI I had my first chemo in the vein but will have a chest port put in before my next treatment on 3/25.  My understanding is that it cannot get wet for 2 weeks - so that may get in the way of your swimming?!

    PennyCookson - Thanks for mentioning my fav Leonard Cohen quote.  It brought tears to my eyes, as it always does!

    LOVE Aveda products -- you can look at their stores or online OR at Aveda hair salons.  Just Google locations near you.

    I highly recommend the free downloadable meditation/ relaxation tapes that Kaiser Permanente offers by Belleruth Naperstek (hope I got that name right -- I asked for suggestions elsewhere on the Board.  Got lots of great ideas but this one was free and awesome.)

    I'm 3 days out since my first chemo.  I've been pretty low energy but am managing the side effects pretty well.  It was definitely more scary in anticipation than in actuality.  When I first arrived, I truly thought my head would explode.  Plus I was putting pressure on myself to not lose it which didn't help.   I felt my sinuses acting up the 24 hours BEFORE starting chemo and am wondering if I didn't have this woozy sinus fluids in the head feeling, if I'd feel even better.  Don't know...Today was a busy work day for me and I'm just glad to have gotten through it -- VERY thankful today that my office is in my home.

    Can anyone tell me how I add my diagnosis into my profile?  I tried but didn't see the specific spot (am sure it's my oversight...)  Thanks all for being such great lounge-mates.

  • Huskerkkc
    Huskerkkc Member Posts: 471

    Silia, 

    Be sure you are logged in to the site first, with your user name and password. Up at the top it should say, Welcome, Silia. Click on your name and on the right side of the page should be a place to edit profile.

    Click on that and you will have a list of questions to answer yes, no, or it will give you a dropdown arrow for other choices. You can choose how much you want to share, or there may be things that you won't be able to answer because you don't have those results yet, or you may not know, or you may just not want to have it public. It's up to you. Be sure to save and then you'll have it showing next time you post.