December 2012 chemo group

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Comments

  • Bren58
    Bren58 Member Posts: 1,048
    edited January 2013

    powermom - the stew sounds wonderful! What is your recipe?

  • powermom
    powermom Member Posts: 195
    edited January 2013

    Bren, Got it from Real Simple magazine, and this is the first time I have tried it. If it's good I'll share the recipe. Hope it is good because the ingredients are super healthy!

  • kiwikid
    kiwikid Member Posts: 204
    edited January 2013

    Yes Nicole I got really puffed. I thought I'd like to go for a run about day 8 last time and only made it to the end of the street, I was puffed and my legs were exhausted! I think it is to do with the cell counts, not our hearts. X

  • mfml
    mfml Member Posts: 77
    edited January 2013

    Hi Ladies - I've been reading your posts but off the grid for a few days.  First of all - I am very excited that I did my last AC a few hours ago!  Very happy about that - just get me through the next 5 days!.  I decided at the last minute to do taxol every 2 weeks for 8 weeks (I was given the option of weekly 12).  I was really frustrated that I couldn't get a clear recommendation from doctor and that the choice was left to ME of all people. 

    I had to have a surgery last Thursday to recut and seal the incission from tissue expander.. would not heal!  Hope it makes it through this last AC - I guess its worse for healing than the taxol is.

    Another bit of weird news... my ER receptor status... keeps changing.  Biopsy - slighly positive, surgery - negative.  Now they have taken some of the frozen tumor and found something "interesting" - there are clumps of cells where greater than 50% of cells stain low to mod - but overall these are less than 1%.  Not sure if this is technically triple negative or not.  Anyhow - will take tamoxifen.

    Another curve ball... radiation.  I guess I am in the gray zone on this so my MO wants me to see a second RO.  Sounds like kiwikid in a similar dilemma??  Now I have to decide on radiation?  I am guessing it will do a number on these already poorly healing tissue expanders...  but if it gives me a few % improvement in 10 year survival - I'll do it.

    Ugh.. I just feel like I am in alot of "gray areas" - triple negative or not?  radiation or not?  There just doesn't seem to be much data on the "in between" cases.  Any advice, experience, or anything would be much appreciated!

    I hope everyone is doing OK-ish now that most of us are pretty far along in our treatments. 

    Take care!

  • Bren58
    Bren58 Member Posts: 1,048
    edited January 2013

    mfml - WOOHOO for your last AC!!!! Sorry you had to have another surgery though. You are not alone in being in the grey area. Not all of our cases are cut and dried. I think in the end we have to get as much information as we can and make the most informed decision that we can live with. Nothing about this disease is easy!

  • Dawn1008
    Dawn1008 Member Posts: 31
    edited January 2013

    Ladies, I'm on my bad day, day 3. Struggling to get enough fluids in. Everything I try makes me burp and I hate water alone. Any suggestions? Does anyone else on dose-dense AC have problems with bloating, burping, and generally feeling awful?



    Anyone's feedback would be appreciated.



    Dawn

  • Dawn1008
    Dawn1008 Member Posts: 31
    edited January 2013

    Nicole, yes! I feel so weak the week after AC. I walked from my room to bathroom to my son's room and back this morn and I felt like I ran a mile. This is my stay in bed day #3.... I just feel icky from head to toe. Day 1 I always get a weird heat rash on my face and neck. Has anyone else experienced this? It goes away, but now my face feels like the Sahara Desert.



    Praying for minimal SE's for all my fellow AC-ers.



    Dawn

  • PeggySull
    PeggySull Member Posts: 686
    edited January 2013

    Dawn and Nicole, I had my last AC on Monday and if I walk from one end of the house to the other today I have to sit and rest.



    I'll have nausea until Tuesday if the previous 3 rounds repeat.



    Now on top of that I've developed thrush in my throat. Haven't been able to eat anything solid all day. MO nurse is calling in prescription for Magic Mouthwash. Anyone had experience with this med and how quickly it works? Is it yucky tasting?



    Peggy

  • Nicole503
    Nicole503 Member Posts: 295
    edited January 2013

     Dawn1008 - I definitely struggle with fluids a few days after chemo.  I am finding good luck this round with grape juice cut in half with lemon sparkling mineral water.  The sparkling mineral water makes it palatable somehow.   Water is out (tastes godawful) and I get grossed out by too much tea.  I also burp a lot, and then a few days later end up farting a lot as the steroid and nausea meds work their way out.  It's just lovely. Bald, burping and farting and my belly swells a bit too.  I'm starting to look and sound like my Dad!

    Thanks everyone for the feedback about being easily winded after AC.  It does seem better today.  Yesterday I was really worried ~~ if only I could turn off my worrying mind!

    Congrats mfml and PeggySull on your last rounds of AC!!!  It's a month until I will follow in your footsteps but everyone who crosses the AC finish line helps me embrace the idea that it can be done and I will do it!

  • Bren58
    Bren58 Member Posts: 1,048
    edited January 2013

    Magic mouthwash is awesome! I got a script for it when I got mouth sores after tx1. Now I start using it a few days after each tx and keep using it for about a week. It has really helped with some of the mouth issues.

    As far as drinking all that water goes, it is really a challenge to get enough when it tastes so bad. Try mixing in some juice, whatever kind you like. I have tried both orange and grape with some sucess. Also try ginger ale or gatorade as alternatives.

    For those of you with the burping/gas/heartburn issues, have you tried taking something like gas-X? You might also want to consider a 10-14 day course of pepcid or prilosec starting a few days before tx. I did not know this until recently, but since the chemo drugs target fast growing cells in our bodies, that includes the ones in our mouth, stomach and intestines. That is one of the reasons we get all the digestive issues.

    ((((hugs)))) to all of you who are feeling so crappy this week.

  • Dawn1008
    Dawn1008 Member Posts: 31
    edited January 2013

    Nicole, I hear you and I am exactly the same way... Such a joy to live with the week of chemo! Hahahaha!!!! I also get the bloated, swollen tummy (along w my burping, farting, nausea, and lethargy). This morning my 7 yr old touched my stomach and asked, "Mom, is that your BELLY?!?!?" There's no filtering what my boy thinks! It's good to be able to laugh about all this mess though. We can get through it! Thanks for the tip on the grape w lemon sparkling... Will definitely try this. I will also be on my last round of AC in about a month, Feb 4th. I can hardly wait to get it over with. They say the taxol is not nearly as bad. I am hoping and praying for truth in that statement!



    Peggy, I haven't had the magic mouthwash, but baking soda and salt in warm water is good to help ease the irritation. I had bronchitis for 6 weeks (not fully recovered yet as chemo seems to trigger snot and coughing all over again), plus I had laryngitis. I ended up at the throat specialist since I had no voice for 4+ weeks. He said AC is causing acid reflux, inflaming your voice box, causing the loss of your voice. Who would have known that? Only one thing is for sure, there is never a dull moment on AC! :). So take good care of your throat!



    ~Dawn

  • powermom
    powermom Member Posts: 195
    edited January 2013

    Bren, The soup was Great! Here's the recipe:



    I used kale instead of mustard and turkey sausage



    Lentil Stew with Mustard Greens and Sausage



    1 T olive oil

    3/4 lb Italian sausage links, casings removed

    2 medium onions, chopped

    2 cloves garlic, chopped

    6 cups low-sodium chicken broth

    6 cups stemmed and torn mustard greens (about 1 bunch) or kale

    1 lb sweet potatoes (about 2 medium), peeled and cut into 1-inch pieces

    1 cup dried lentils

    Kosher salt and black pepper



    Heat the oil in a large pot or Dutch oven over medium high heat. Add the sausage and cook, breaking it up with a spoon, until browned, 8-10 minutes. Add onions and cook, tossing occasionally, until beginning to soften, 3-5 minutes. Add the garlic and cook until fragrant, about one minute more.



    Add the broth, mustard or kale, sweet potatoes, lentils, 1/2 t. Salt and 1/4 t. pepper to the pot. Bring to a boil, reduce heat and simmer, partially covered, stirring occasionally until the lentils and sweet potatoes are tender, 30-35 minutes.



  • tracyleigh
    tracyleigh Member Posts: 9
    edited January 2013

    Runnergirl2013, I hope tx went smoothly for you today.  I had number 4 today and, even though 3 went really well, I still found myself feeling unsettled going into today.  We have to do a a lot of psychological battle just to walk forward, don't we?  I'm glad today is behind you.

    Nanc620, I hope your tx went well today too and that you finally got to sleep last night!

     

    Bren58, I'm so impressed that you've managed to keep walking.  I was walking before tx began, but have had a hard time getting back to it.  No guilt for taking a snow day. :o)

     

    Nicole503, I've absolutely felt more out of breath.  If it's in the first couple of days, I think (for me, anyway) it's the steroid I start taking the day before tx, Dexamethasone.  After that, I learned last week at my doc appointment that the chemo causes our hemoglobin to steadily decline, so it's as though we're growing more and more anemic.  After round 3, my nurse said it's as though I've lost 2 pints of blood.  Unfortunately, it will continue to be cumulative until chemo is finished.  I sympathize with you - it's no fun.

     

    powermom, I'm totally with you on taking the time to enjoy life a little more now.  I had to take a leave of absence from grad school to do tx and was sad about that, but I'm doing a better job of enjoying and being patient with my kids and not being too hard on myself for things that don't get done.  Let's pull out all of the good that we can from this tough time!

     

    mfml, I finished AC today and am shouting with you!  And by shouting, I mean, sitting in my chair preparing for the next 5 days like you are. :o)  My biopsy returned as very slightly positive, which my MO said is essentially negative, so she's treating it as negative.  I can't say that I can advise you based on that, but just wanted to offer my experience.  I would feel very anxious and overwhelmed if I were offered a lot of options, too; I'm a researcher and work hard to be informed, but at the end of the day, I don't have a medical degree and 20 years of clinical experience behind me.  My MO is respectful of me and open to my questions and thoughts, but ultimately, I've chosen to trust her, put my care in her hands, and feel good about it.

     

    Dawn1008, oh, the burping and bloating and feeling awful - have definitely been there and expect I'll be there again shortly.  I agree with Bren58 on the gas relief and heartburn meds.  I, too, am HATING water right now, but know that I really need fluids, the clearer the better, although whatever I can tolerate will have to do.  Right now, apple juice and Aquafina grape-flavored water are the best I can do.

     

    I'm wondering if anyone on AC deals with super watery eyes.  If so, any suggestions?  Mine are constantly running, especially in the morning, starting as soon as I get up, and it's lasting longer and longer into the day.

     

    Settling in after tx 4 today for a couple of days of yuck.  The fact that it's the last AC will hopefully be enough to push me through it.  Much empathy and understanding to all of you in the same post-tx boat, and many well wishes for those of you preparing for the next one!
  • Sandra60
    Sandra60 Member Posts: 201
    edited January 2013

    Hey runner girl - i am on # 2 Tommarrow ! Had my steroids and went for a nice bike ride and lunch with df :)

    Hey question for those on the TC regime - do us still feel like u have a funny metallic taste in your mouth at day 20 ? Guess it will go away post chemo eventually !



    Nancy - glad u re- read that bottle - no more steroids than necessary Thank You !



    And Paula - and all going for treatments thurs and Friday - we are all closer to our goals so let's all be thankful doe that !!!



    Bren - the Latisse is by prescription only so it should just be a co pay if your insurance works that way .

  • LeeA
    LeeA Member Posts: 1,660
    edited January 2013

    I started generic Prilosec a few days ago.  I'm not sure if it's a coincidence or not but the burning lower GI pain has ceased (hallelujah!).  

    I felt so good today that I moved some furniture (not too smart). 

    Next week's chemo may have to be delayed by a day or two because of my low WBC count.  I guess it's a Neulasta shot for me on round two (the day after TX).  

    Gentle hugs for everyone who isn't feeling well.  Regular hugs for everyone else!

  • kiwikid
    kiwikid Member Posts: 204
    edited January 2013

    Mfml, why do you or might you need rads after mx? Were margins close?



    Dawn, I had hiccuping, burping and a few times I had a mouthful of food and really struggled to swallow, like I thought I was going to spontaneously vomit without feeling sick, just my throat wouldn't take the food down, it was weird. It has only just stopped actually, probably my longest se.



    Day 19, hair follicles hurting like hell, going forthe proper shave tomorrow morning.



    Not looking forward to round two but it's closer to the finish line so all good.



    Xx kk

  • LeeA
    LeeA Member Posts: 1,660
    edited January 2013

    kiwikid, have you tried Prilosec?  It's over-the-counter here.  I bought a bottle of the generic version and started taking it this week based on some suggestions here on the boards.

  • kiwikid
    kiwikid Member Posts: 204
    edited January 2013

    Yes I have losec, I guess it's the same thing, but haven't been taking it as my stomach acid has been fine. :) The problem is actually getting the food beyond my mouth, like it seems to get stuck at the back of my mouth and activates my gag reflex, it's quite awful!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2013

    I made a meal day 7 after AC #2... Breaded haddock, macaroni & cheese, and mixed vegetables. I couldn't taste it at all, (though it looked so pretty on my plate). DH liked it so I made it again last night. I was amazed at the awesome taste of the haddock! It could taste every bite.



    Now tomorrow comes AC #3. I'll keep my tastebuds for about 4 days, then it's back to looking for anything with taste.



    I hope you are all having a great day.



    Blessings

    Paula

  • Bren58
    Bren58 Member Posts: 1,048
    edited January 2013

    Powermom - Thanks for the recipe! It looks really good. I will have to try it this week.

    Hoping all goes well for those of you going for treatment today and tomorrow.

    For those who just had treatments, I wish you mild and minimal SE's.

  • jenjenl
    jenjenl Member Posts: 948
    edited January 2013

    If you can't get enough fluids I recommend going in to get some.  My side effects were too hard on me now my MO gives me fluids tx day and the 3 days after.  I don't think I would make it without it. 

  • tracyleigh
    tracyleigh Member Posts: 9
    edited January 2013

    kiwikid, I haven't really had burning with heartburn/indigestion either, but when I needed to burp, it would feel like something was blocking it from coming up, and when I drank, it was like trying to swallow past a marble.  Not exactly like what you're experiencing, but that's just to say that heartburn symptoms can be varied.  40mg of Pepcid 2xday as prescribed by my MO nurse has made a world of difference.

    Paula, those no-taste days are rotten for sure.  When I have them, I worry I'm eating too much in my quest for flavor (plus I sometimes have a hard time distinguishing nausea from hunger), and when they're done, I worry I'm eating too much because I'm so glad to enjoy food again. Undecided  I hope #3 goes well for you!

  • powermom
    powermom Member Posts: 195
    edited January 2013

    Hi girls, I have noticed that my daily pills have been harder to swallow lately. I guess the throat is part of the digestive system, and we all know that it's under attack during chemo. It makes sense now that I think of it that way.



    Wishing all the best for all of you.

  • Sandra60
    Sandra60 Member Posts: 201
    edited January 2013

    Hi ladies - remember that small frequent meals are the best - hi proteins and low sugars and whole grains fruits and veggies . Mi think my saviors were low acid foods that go down your throat easy like yogurt with live cultures , bananas and avacodos !!

  • bcoct
    bcoct Member Posts: 28
    edited January 2013

    My onc prescribed Magic Mouthwash which is from the pharmacy.  Its a mix of lidecaine, and some other stuff and only

    thing that eased my mouth sores in the past.  Call them to get some and you will have relief

    goes 2x a day and helps.  Hope that helps you.

  • FriendGwen
    FriendGwen Member Posts: 177
    edited January 2013

    Hi ladies. I'm at work gearing up to head to chemo round three which will put me at the half way mark. Hoping I don't feel any worse than the previous two rounds but will deal with whatever comes my way. Happy to have off work on Monday for MLK as that may be my worse day. It's like running a race every three weeks! Good luck with all my sisters whether at infusion or battling the soldiers on the home front!

  • donster
    donster Member Posts: 39
    edited January 2013

    Good morning Ladies,

    I found this thread this morning and am so happy to have found all of you.  I was also diagnosed in October 2012, had a double mastectomy in November and started my chemo treatments in December (Taxotere and Cytoxan).  I have just finished round 2 of 4 so I am halfway there.  I find it frightening not knowing if the tough times are behind me or ahead of me as each treatment has had different side effects.  

    Like Bren58, I have found Magic Mouthwash to be my savior this week.  I had no issues with thrush the first time but the second round it came on with a vengeance.  My tastebuds are still shot but at least my mouth is numb and I am able to swallow food...

    I am wondering a few things and hoping you ladies might have some advice for me -  I have very thin veins and although the nurses have been able to find a vein for iv they have now eliminated 2 veins for further infusions.  They are discussing a Picc Line and am wondering if anyone has one or has any thoughts?

    Also I feel not just dizzy during the day but sort of a heaviness in my head.  I did not have this feeling at all with round 1 and wonder if anyone else has had this side effect and what you all did about it? 

    I am sorry that so many of us are going through this.  I hope you are all feeling better from your treatments and side effects and enjoying a good day today.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2013

    Donster~I think what you're describing is the dreaded Chemo Fog. For me it's comes about Day 6 and its the worst part for me. I feel like I can't stand for more than a few minutes, (on the edge of dizziness). It feels like it takes effort to hold my head up. Even my vision is a bit fuzzy. For me, it only lasts one day, or maybe 36 hours.



    It's mostly from the steroids leaving our systems. At least, in my case, that's what it is.



    Blessings

    Paula

  • donster
    donster Member Posts: 39
    edited January 2013

    Oh my goodness, Paula, you hit the nail on the head.  I had chemo on Friday, which makes today, day 6.  I am relieved to know that this is normal and it will pass.  I did not have this with round 1 and it really took me by surprise.  I so appreciate your reply.

    I am so sorry that you are going through this too and I hope you are doing well and feeling well today.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2013

    donster~If you're taking steroids, expect a lot of peeing over the next couple of days along with possible chills. It's the steroids way of waving bye bye, as they stick their tongues out at us.



    Blessings

    Paula

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