January 2013 chemo group

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  • hope49
    hope49 Member Posts: 370
    edited January 2013

    Cancernoway, I think that price sounds great for your shots. I just got the EOB form the ins co and my first shot was $9,000!!! My copay on it is almost $600...yikes! I'm going to give my MO a hard time about that and make sure it's something I HAVE to get every time. WOW. The whole chemo day wasn't even that much (although it was close).

  • Lauren15
    Lauren15 Member Posts: 119
    edited January 2013

    Hi ladies, I haven't been on in a few days, and I've missed so much.  I hope to catch up when I can with all the posts, but I'm so behind in work.  My next treatment (#2) is Thursday, so I need to work all weekend and long hours mon/tues/wed to make up for the lost time.  I NEED ADVICE.  I had my port put in a couple of weeks ago, and it was healing nicely and stopped bothering me the last few days.  Today it's killing me, and it looks really swollen, and it almost looks like I have an alien in me.  Has anyone had a port infection a while after it was put in?  I'm not sure if I should go to the emergency room or not.  It hurts, but it is bearable, and I don't have a fever.  I'm just scared something is going wrong inside of me.   The ice has been helping.  Any insight?

  • SeattleMama
    SeattleMama Member Posts: 147
    edited January 2013

    I just went in today for chemo and they didn't like my port 'area' at all.
    I got it 12/26.
    My postsurgery cami strap is rubbing it.  Mine is a ball under the skin, sticking out, enough, and I have been taping a gauze pad over it to keep it from rubbing.

    WELL, noone liked that today.  "Keep it uncovered" "Let it breathe and heal and dry up" "Put Neosporin on it and don't cover it"

    Definitely keep an eye on it. Let it breathe. If it hurts, I'd go to the hospital and let them look at it.  They know better than us.

  • SeattleMama
    SeattleMama Member Posts: 147
    edited January 2013

    FYI Mine does not hurt at all. I don't feel it, doesn't bother me at all.

  • cancernoway
    cancernoway Member Posts: 90
    edited January 2013

    I thought the price was great also. I even confirmed it with a couple people at the insurance company to be sure.



    Gd2shuz congrats that is awesome and thank you for sharing. Soooooo happy for you. I agree and would keep on them about antibx.



    Good night all.

  • Oliverhog
    Oliverhog Member Posts: 74
    edited January 2013

    SeattleMama, you had a huge reaction to the taxotere?  I had a huge reaction.  Pressure in my chest and head, breathlessness, really rapid heart rate, turned bright red, saw sparkly spots in my vision like someone clocked me over the head.  I thought I was going to hit the bricks and after that I had no clue whether I'd have a heart attack and die or my throat would close up and I'd wake up to find myself intubated and on a vent.  I have never been more afraid in my life of the possibility of imminent death.  The onc nurse had turned off the drip, but the saline injections for the benadryl and hydrocortisone were across the room on the desk and she couldn't get anyone to get them for her for a few minutes.  I was hunched over with my elbows on my knees trying to purse lipped breathe to calm myself out of the breathlessness.  It wasn't working.  Finally got the drugs injected into the IV and the symptoms abated pretty much in the order they appeared.  However, I had gotten SEVERE pains in my hip bones across my low back that felt like liquid bone marrow biopsies.  Those EXCRUCIATING pains and the sparkles in my field of vision were the last to go and took the longest to go.  What happened to you?  Oh, my blood pressure was up 150 over 94.  My norm is 110 over 64.

  • SeattleMama
    SeattleMama Member Posts: 147
    edited January 2013

    Oliverhog, my taxotere reaction was one the oncologist had never seen before.  Though, I've read plenty on here, and it seems it just comes with the territory (rashes, mouth sores, itchy, swelling).

    But the swelling was the worst and it all happened 3 days after infusion, when the steroids had worn off.  I likened myself to the Elephant woMan.  Scalp swelled high, mouth swelled in addition to sores inside, hands swelled to excrutiating bulge, rash - mainly around joints, including hips.  And that 'red dot rash' pretty much everywhere. 
    First they told me to get benadryl - - that did NOTHING.  Then I had a steroid regime, and that helped, but they took me off Taxotere and put me on Carbo.

  • Oliverhog
    Oliverhog Member Posts: 74
    edited January 2013

    SeattleMama, your's WAS a HUGE reaction.  Mine was a blip on the radar compared to that.  At least I was able to get my symptoms resolved in a few minutes while I was there at the University of Chicago.  You poor baby.  This crap sucks.

  • Bryona
    Bryona Member Posts: 214
    edited January 2013

    Treborsmom, ciao bella. I hope your 2nd tx today went well, and I'm glad you've found our little (not really so little -- really, far too big. Stupid cancer!) family.

    Nikki {{{{{HUGS}}}} to you, twinsie. Such a rotten feeling. I know I'm seen by everyone around me as sort of superhuman and capable of overcoming everything, and sometimes that's awesome (gotta love the respect!), but sometimes I wish I didn't have to completely collapse in front of them to make them hear me when I say I'm not feeling so strong. FWIW, they seem to respond well to specific directions from me, maybe because they're used to me being the boss! Anyway, I told a bunch of people today that the bad days for me will probably be Friday-Monday after tx, and that I don't need them to cook for me (very limited diet at that point!) but I do need them to tell me they love me A LOT and to remind me that the chemo fog is chemo and not me. We'll see how that goes.

    Lauren, I'm going to lean towards better-safe-than-sorry. If it were me, I'd at least call the surgeon and describe what's going on, then let her/him tell you whether or not you need to come in. The ports are generally easy and safe, but odd things can go wrong, and it's better to catch it early if it does. Right now, I say we should all feel free to call every doctor for any damned thing we need to know!

    gd2shuz, what wonderful news! That's so, so great! Oh, I was really ready for some good news today. Hooray!

    And, speaking of good news, here's a bit more. Nancy update: Nancy's home from the hospital! Woohoo! She says her reaction was to the Neulasta, not to the Taxotere. She hasn't given much more detail, but I think right now she's still struggling with typing clearly. Anyway, she's home and healing, and that's the most important thing.

    And now I'm going to get all lovey on you. Big, big hugs to all of you, because you're wonderful. I've just spent the past 10 minutes telling my DH how incredibly grateful I am for all of you. I never guessed how important you would be to me, but you are. A lot of people love me and are pulling for me, and my DH has been lovely and wonderful, but they don't understand. I'm so, so very glad they don't understand, but they don't understand, and you do. You all speak to my heart, and when I'm reading your posts, I feel not at all alone. It's more of a blessing than I could possibly have asked for. I hope you all know that.

  • Bryona
    Bryona Member Posts: 214
    edited January 2013

    About Neulasta: If you think you don't need it, you might want to ask your MOs about using Nupogen instead. The tricky thing about Neulasta is that it is supposed to be given the day after chemo tx and 14 days before the next tx, so they don't want to wait to see what your WBC does; they just want to get it in while they can. On the other hand, if you need it, it's just the one -- insanely expensive! -- shot. Nupogen can be given anytime (no problem with having to wait two weeks after for a chemo tx), but if your WBC tanks, you might need the shot every day to do the same thing the one Neulasta shot does. So, if you have questions about whether you really need Neulasta at all, you could always talk to your MO about waiting a few days, doing a CBC, and then doing Nupogen if it's needed. If it's badly needed, you could always go back to Neulasta from then on.

    (Thus speaks Dr. Bryona, Chief of Obsessive Research at Google Medical School. So, yeah. Take this with a grain, or many more, of salt...)

  • SherylB
    SherylB Member Posts: 450
    edited January 2013

    gd2shuz,

    Please enjoy your good news. I want the best for myself, however, I rejoice in the good news for everyone else too. That is the Grace I have received in my life and even more so now with this cancer.

    Don't get complacent is my gentle warning, stay on top of all medical needs.

    Love to all, Sheryl

  • SherylB
    SherylB Member Posts: 450
    edited January 2013

    tammi,

    Just saw your post/name and wanted to reach out. I started tx. 1/10 and wanted to let you know that I am just south of Jax and go there often (have a sister in Jax) if you need anything.

    Hang tough, Sheryl

  • SherylB
    SherylB Member Posts: 450
    edited January 2013

    Lauren,

    My port was placed 12/28 no problems, woke up 12/30 in so much pain I wanted to rip my chest open. Red, swollen, draining and very painful. Went to ED and was admitted with a cellulitis/infection of the skin, not down in the port and not in the blood. Was in hospital 12/30 until 1/2 on IV antibiotics then sent home on PO antibiotics. Please don't wait if the infection (if that is what it is) gets into the port area they may have to remove it. Go to the ED girl now if you haven't already.

    Hang tough, Sheryl

  • SherylB
    SherylB Member Posts: 450
    edited January 2013

    Hi all,

    Well AFGO (another fu...ing growth opportunity). Hair started coming out yesterday and today by the handfuls everytime I ran my hands through it. Got DH (for me that means damn husband) who was really dear tonight to shave it. I cried off and on all day and figured since it was gonna happen to get it over with. Well I didn't shed a tear, we actually laughed and it was good. I like it (yes I am a sick puppy) I  remind myself of Susan Powers (Google for you young folks). I am sure when the baldness strikes instead of the 1/2 inch peach fuzz I may feel different. I am gonna change my Avatar as soon as I get my face painted on (still working on getting my eyebrows like the picture LOL) and get another pic taken. I know we are all different but I am sitting here with a turquoise cap on and I feel ok. Had to borrow the pic from Skimommi, thank you.

    Hang tough, Sheryl

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

    hope49, well at least you went for a heathier option. We didn't hit taco bell but did go to a dive Mexican restaurant. Probably not the smartest choice right now, but nothing else sounded good. My taste buds are already playing with me. Water didn't even taste good yesterday, gatorade - ick, and soda no good. So least to say I didn't get enough hydration yesterday.

    gd2shuz that is fabulous news! Congrats on having the "good kind of cancer". LOL

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

    Bryona you are our rock! {{{hugs}}} right back at you!

    Well, I'm up at 4 am again. But maybe thats becuase I went to bed at . . . 6? IDK for sure. But we went for the N shot at 4, ate crappy, but tasting good Mex food, about another hour home and I crawled into bed never to be heard from again. Until now. Not sure how I'm feeling yet. I'm a little backed up, so that bothers me and I don't know whether I feel any neausea and should take the Compazine or not. I really truly think it is all just lower bowels. (TMI, I know). Don't think I feel quite as foggy as last time, yet. But then again, here I sit in the pitch blackness of my cozy room with no one to interact with except the computer screen. "Real" morning may make for a different outcome.

    For me, the Neulasta shots are $8,400 and my copay would have been $250 if we choose to administer at home. I only drive about 40 minutes to the hospital, so for that kind of cash I make the drive. No copay when we go in. Isn't that crazy!

    I'm already trying to plan out meals today. Nothing sounds good though. Not even that magical broth Skigirl had me craving so bad the other day. Water is finally tasting better though. I have horrid cotton mouth so hydrating today may not be so much of a problem. The water is going down good.

    Someone please make something yummy, and maybe on the spicy side, for dinner and I will be over with bells on. So, does anyone even know where that saying came from and what exactly it means? Guess to google I will tend. And if not I can count on Byrona to come up with the answer, my lovely Italian leading lady.

  • laurie2025
    laurie2025 Member Posts: 117
    edited January 2013

    mind if I join the group?  My chemo started 12/31/12, hope that's close enough.  I am on TCH for Breast Cancer Stage IIIa. ER+/PR+/HER2+. Lymph note removal dissection left.

  • gr8flmama21
    gr8flmama21 Member Posts: 31
    edited January 2013

    Welcome Laurie2025. Gd2shuz that news is fabulous! Hugs sherylb -i do remember her! Glad Nancy is out of hospital. Bryona you do rock!

    Shocked that I slept almost the whole time since returning from work yesterday but definitely dont feel as weepy as I did yesterday. Wishing all a gentle day❤

  • Bryona
    Bryona Member Posts: 214
    edited January 2013

    laurie, ciao bella! That's what we say around here, a sort of shorthand for "We hate that you have to be here, but we're glad you found us," perhaps followed by "because, frankly, we're awesome, and we guess you are, too!" You come right on in and make yourself at home. A few of our other triple-positive bellas (ablydec, cancernoway, LeeA, and Rhonda2) are also on TCH. How's your tx going?

    Sheryl, AFGO is my new favorite acronym. I think I'll have it printed on the sleeve of my "Here's to chemical warfare! Death to cellular insurgents!" t-shirt. Hope that's okay. :)

    gr8fl, I'm glad you're feeling less weepy. Ugh, I know I hate that feeling. Sleep is wonderful!

    skimommi, hoping that the real morning didn't bring any extra fog with it. I envy you -- and everyone else who's commented on it -- the Mexican food. Me, that's one of the only lingering effects of chemo in the second week: I can't eat anything spicy or acidic because it makes my mouth burn, which I can't think is a good sign. I haven't been able to eat anything tomato-based since the day of my tx, and I LOVE tomotaoes. Seriously? Personally, I think that's just rude.

    Speaking of lingering SEs, here's the other one for me: I can't exert myself at all or my heart starts to pound. I mean POUND. It doesn't race, and it isn't irregular, so my doc isn't worried (yet), but it feels like it's slamming against my ribs so hard it hurts, and that's just from walking at my normal pace. I don't have a chance to notice exertion anywhere else (breathing, muscles, etc.) before I notice it there. Yesterday I went to work, and just talking to another teacher for an hour -- sitting down! -- made it start up. Then I start to get light-headed and have to rest. This is day 11, and I'm on a two-week tx schedule, so it seems like I'm going to have to put up with this until I'm done with AC. And again I say, that's just rude. I mean, I invite chemo into my home, I feed it whatever it wants, I give it all the drugs it could hope for, and this is how it treats me. Sheesh!

    Ci vediamo, belle! Have a wonderful day!

  • klaudiak
    klaudiak Member Posts: 25
    edited January 2013

    My MO said I don't need neulasta unless I have a fever after the chemo and my WBC was good. He thinks I won't need it. I'm glad I wont need the neulasta shots.

    Bryona I completely agree with you. This forum has been very helpful and important to me. Just reading the post helps me relate and be ready for what's to come. Thank you all very much.

  • VirginiaJ
    VirginiaJ Member Posts: 13
    edited January 2013

    Hello everyone.  I have been following your comments for days and finally decided to join.  So far I have done well with my treatments -- no problems with my mastectomy or port replacement.  I had my first chemo on 1/24/13 and Neulasta on 1/26/13 -- so far just a little heartburn and constipation but I know that it is early days yet.  I am a college professor and still working; however, I have dear friends who are ready to teach my classes if the need arises.  I had should length hair until a few days ago, but it cut off and bought a wig -- not too sure if I'm going to wear the wig much.  I'm liking hats a lot more.  I have been married for 47 years.  My husband had a stroke three years ago, which affected his left side; he cannot use his left arm and has trouble walking.  He worries that he cannot do much to help me, but he tells me everyday that he loves me and that I am beautiful.  I tell him that is all I need.  We have three sons and 6 grandchildren.  Only one son lives near us, and he and wife are a huge help to us.  The others provide long distance moral support.  I also have a dear friend, who is a colleague and former student.  She is like a daughter to me and has been my side throughout this challenging phase of life.  We have a strong network of friends, who are providing are kinds of support.  Now I am adding all of you to my support group.  We'll get through this together.

  • SherylB
    SherylB Member Posts: 450
    edited January 2013

    Bryona,

    Please use AFGO it says it well. About your heart pounding I feel sure you are keeping hydrated just want to throw that out there in case. As I began to feel better I noticed I would slack on the water and have been to stay as close to a gallon of water a day. I need the gallon because I drink way to much diet coke and that dehydrates from all the caffeine. This chemo is so alien that all kinds of weird things are going on. The pounding pulse may be your b/p going up. Just checking.

    Love to see your posts keep it up.

    Sheryl

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

    Laurie and VirginiaJ Ciao Bellas. You have found a great network of strong fighters and survivors here. We all pull eachother up, are good for a laugh, and can rant and throw pity parties that we all understand.



    Bryona that sucks about the food you have to avoid. But maybe your body is doing you a favor. If you can't have it now you will never get ruined to it by associating it to chemo.

  • Skigirl72
    Skigirl72 Member Posts: 478
    edited January 2013

    Good Morning Ladies! Happy Hour yesterday was successful. I didn't fall off my bar stool, but the nurse tried to pick up my DH lol. She called him a tall drink of water and winked at me... (insert bad porn music) lol... No steroid high last night. Bummer, I was looking forward to running on the hamster wheel. I feel OK today. My tummy is just a little off. I have been using the pet hair sticky roller on my head every morning. IT WORKS! I am almost shiny bald. Fascinating stuff. My sister and my niece are coming over today. My beautiful niece (23yrs old) is donating her hair to Locks of Love for me. She is getting married in June. She is so sweet to cut off her hair 5 months before her wedding. I am weepy over this. Thanks for reading my scary thoughts the other night. I am not usually a sad person and I don't scare easy. I guess we all know how frightening this new normal really can be.

    Armdbit- Fingers crossed over here for the cold caps. Post some pics please?

    smethot- Great news on your results! Happy to hear good news! Keep fighting!

    SherylB-Sounds like going back to work is not a good idea. Lots of germs and now they are saying the norovirus is spreading and can live on a surface for a week!! WHAT??

    Colleen-doc didn't perscribe antibiotics? thats a good sign. Thinking about you.

    MandyNJ-Keep up the iron rich food intake. Try relaxation techniques too. Maybe that will help also. and NEVER apologize for the rants. We are all in this together. Someone told me that is was not my job to make everyone comfortable with my cancer... So rant away and don't hold it in. ((hugs)) gentle ones of course.

    Tammi- Glad your TX went well. Mine have been uneventful and I thank god for that everyday.

    gd2shuz-Stay with us here! YAY for drains out! I felt so much better when I had them removed. A big sigh of relief. You will keep getting stronger and glad you finally have a date for your port. mine has been in for a month and i ignore it now.

    Jubby-Holy Hot down under!! 90s?? I live in NY 1 hour from Niagara Falls and it is 14 degrees right now. Brrr. It was single digits yesterday am. And you nailed it- 'Oh, you are so brave you chopped off your hair... um NO that was a bit of a no brainer really... Being brave is chopping off a breast, having chemo and facing cancer at 40 with small children'. Perfect! Very few people get it. thank god we found a place that everyone gets it!

    Treborsmom- I do really well when I think logically and focus on tests and what i'm supposed to do. Everyonce in a while those pesky emotions creep up and WHAM! Tough few days...

    NikkiLiz- From one fellow hard ass to another... Speak up to your friends. Tell them you are not fine. Ask for thier help. They want to help, but, they dont know how. That has been a hard thing for me to learn to do. Some of my friends already know that so they dont ask and they just do. I have a schedule for when I need backup and I throw out a email or a txt and first person that responds id my babysitter for that day! It really works great.

    Lauren2025 and VirginiaJ and if I missed anyone else- Ciao Bellas! Welcome to our world of love and support! Bunch of wonderful ladies here to laugh, cry, rant, and whatever else pops up with!!

    Happy Saturday! May we all have minimal SEs and lots of laughter today. We deserve it!

  • ziffy321
    ziffy321 Member Posts: 41
    edited January 2013

    Ciao, everyone!  Welcome hugs to all the new folks.

    Has anyone here used Mugard (mouthwash) to treat/prevent mouth sores?  I have a sample bottle but only used it a few times after my treatment.  The rep who called me about a prescription said it should be used 4-6 times a day.  So far I have not felt the need for it (only very mild mouth tingling), but if it's a preventative for worse problems I don't want to skip it.

  • Lauren15
    Lauren15 Member Posts: 119
    edited January 2013

    Welcome to everyone new - this is a great supportive group. I have no battery left in my phone but I wanted to thank all of you who advised to get it checked. I'm now in the emergency room and getting admitted and be here at least overnight to get antibiotics thru IV. I had to put off my head buzzing and wig gutting today. Hope it stays in for a few more days. my head is very tingly. Port is killing me.

  • VirginiaJ
    VirginiaJ Member Posts: 13
    edited January 2013

    Lauren15 -- I am so glad that you went to the hospital to get your port checked.  Hope you're feeling better really soon.  

  • Sandra60
    Sandra60 Member Posts: 201
    edited January 2013

    Ciao to all - newbies and veterans . Just wanted to pipe in about the neulasta and neupogen shots . Apparently each medical system has their preferences but I think cost has quite a bit to do with it . Mine doe not automatically give the neulasta shot a day after chemo - they wait until a day before the next infusion to do the flood work and then decide on the day of chemo whether to give it . If your counts are low they send u home with several neupogen shots that u self administer - I guess they are smaller doses than neupogen and much less expensive . My blood work was normal so they did not give them to me this time . But yesterday I ran a 100 degree temp ( I had a higher temp the first round but it lasted 5 days - I think because of an infection in my gum from eating popcorn- was put on antibiotics ) so I called the dr . Only nurse returned my call and said drink lots of fluids , rest and go to emergency if fever goes over 101 . Interesting that one poster said they would automatically give a n shot if u ran a. Fever - apparently my health system does not have that rule .



    Hey on a lighter note - I found a great thread for yummy non- wheat recipees - it is called wheat belly - check it out ! Love the coked kale recipee - it actually sounds appetizing with all those other ingredients and kale is such a vitamin packed veggie good for all of us . I will copy past it when I get to my laptop and post ( not so talented on my beloved iPad )



    Wishing us all a wonderful weekend - I am heading into my good week - I may even snow ski on 2/4 - b4 my 2/7 infusion - stay strong warrior friends !!!



    Bryona - u need to tell your dr about those symptoms !!!

  • Rhonda2
    Rhonda2 Member Posts: 133
    edited January 2013

    Hey everyone,



    Only two days out from tax and I'm doing fine. Drinking water all day long like everyone says to do, but I visit the restroom frequently because of it. I only had the steroid affect me the day before treatment and I have been sleeping just fine. My mouth had a fuzzy feeling, but no sores yet! My taste buds are off, but I've found if I keep a little bit of food in my belly every few hours that I don't get queasy.



    I do want go chime in on working through treatment. I am fortunate enough to have sick leave carry me through treatment and wish that everyone else had that same thing. My Onc told me to resume normal life, but don't knowingly go around anybody ill. He also said my most cautious time is the second week from tx. I would like to see some universal standard to make it easier to take off from work if it is needed. Some in treatment have the option to work from home, and that's great, but for those that feel they must return to work is hard. I'm so sorry for those of you that don't have a choice. My prayers are with you.



    Blessings everyone,

    Rhonda

  • Sandra60
    Sandra60 Member Posts: 201
    edited January 2013

    Here is the cooked Kale recipee - going to try it today !

    Suzanne’s favorite thing to do with kale:

    4 cloves garlic, peeled and sliced

    1 bunch kale, stemmed and torn into bite size pieces

    1 cup vegetable broth

    1 tomato peeled and chopped

    1 cup chickpeas

    Basmati brown rice, cooked

    Saute the garlic in olive oil for a couple minutes (you could also add some onion here).  Add the kale and stir until it starts to wilt.  Dig a hole in the middle and put the tomato in there.  Put a lid on it and let it cook until the tomato starts breaking down (5 minutes or so).  Add the broth and chickpeas and put the lid back on for about 10 minutes.  Serve over basmati brown rice.

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