Starting Chemo, November 2013 Group

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  • Amazonwarrior
    Amazonwarrior Member Posts: 485
    edited January 2014

    paulette: Thanks so much for the tip for the dressing. The rash that I mentioned was actually 3 small blisters. The incision area feels pinchy as of now. I hope and pray it's not another infection!  And no, the nurse didn't put any skin prep because she insisted that that's something they don't have and can't even order. Really?! I think I am going to call the agency to verify this as my picc and my health are at stake. 

    I too am quite flexible. I used to be able to put my feet behind my head and still can touch my toes with my head when sitting on the floor.

    BTW, Thanks for the invite. I might just pop in one day. Wouldn't that be something! 

    Virginia: Sorry to hear about your allergic reaction. I hope it gets better. And hey, another Slovak on this site? That's great! 

    Smile 

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  • audra67
    audra67 Member Posts: 521
    edited January 2014

    LOVE IT WALLYMAMA!!!  That is awesome~

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  • jab
    jab Member Posts: 220
    edited January 2014

    that's great wallymama!!!! Let me know when and ill scream with ya!

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  • Paulette23
    Paulette23 Member Posts: 499
    edited January 2014

    with the big round moon the past few days.....PERFECT SCREAM TIME! LETS SET A TIME!!!!

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  • Tammibaby
    Tammibaby Member Posts: 14
    edited January 2014

    Paulette:  When you speak of teeth pain, I know exactly what you mean.  The other night I was looking for a snack and made a ham and cheese sandwich.  The first bite sent radiating pain through my teeth.  The sensitivity to the cold was unbearable.  I immediately brushed my teeth with warm water.  After my second chemo treatment (which reminds me I need to update my information) my gums bled and were really swollen.  I needed to see the dentist who cleaned my teeth and I felt so much relief.  He gave me a mouth wash called chlorehexidine gluconate 0.12% oral rinse.  It was okay.  Since I can't taste much from the chemo, I can't say how it tastes.  I also use ACT mouth rinse which I like better.  I had pros and cons of biotene so I haven't tried it yet.  I use arm and hammer toothpaste with baking soda which really cleans my teeth and didn't burn as much as my other toothpaste which I can't remember at this moment.  Chemo brain is real! :).

    Is anyone's mouth (front lip area) inflamed?

    I don't know if it was a full moon but I was on the same page with a few of you wonderful ladies -- meltdown.  My BFF just listened to me vent the whole day and didn't respond which was exactly what I needed.  God bless her.

    Oh, I found that lemon drops are pretty good in taking out that metallic taste of chemo.  My other friend brought me some from Cracker Barrel -- lemon sanded candies. They sell them online but shipping is more than the candies.  

    I pray everyone has minimal side effects today.

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  • Tammibaby
    Tammibaby Member Posts: 14
    edited January 2014

    Lisa137:  You know, you're right with respect to the different side effects. When you mentioned, the fact that they're different and not the same one throughout the cycle.   I never looked at it from that point of view.  Thanks.

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  • Tammibaby
    Tammibaby Member Posts: 14
    edited January 2014

    smlvr:  Try not to worry about the glucose too much.  I think many of us will have elevated levels during this treatment.  My glucose is elevated as well and diabetes runs all through my family.  My dad lost his leg, my grandma lost her eye so I get your concerns.  Just try to focus when the chemo is all out of your system you will be able to handle it much better.  Hang in there my fellow New Yorker :).

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  • Amazonwarrior
    Amazonwarrior Member Posts: 485
    edited January 2014

    Wally: I'm all in for a loud scream! Tell me the time and I'll join in! 

    Paulette: I hear you about the teeth and gum pain. I've had a few issues there myself. After my 1st chemo, I developed tooth ache for a number of days. I had experienced this kind of toothache when having sinus problems related to my seasonal allergies. This time, however, it was definitely brought on by chemo and luckily it went away after a while. I kept my mouth as clean as possible by brushing with baking soda and also putting a topical fluoride on the tooth to strengthen it. It helped. As far as gums, that seems to be with me an ongoing issue again chemo related. For that, I use lots of baking soda and salt rinses and Nystatin (lidocaine) mucositis mouth wash for pain relief.

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  • Palameda
    Palameda Member Posts: 259
    edited January 2014

    Just found this incredible organization that runs fly fishing retreats for BC women! They're weekend long, free, and sound like a hoot! Apologies to our Canadiennes, looks like it's just US. I'm signing up, it's a lottery. The N CA one is in April, I should be recovering enough from rads to do a little something. Check it out! Castingforrecovery.org

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  • jab
    jab Member Posts: 220
    edited January 2014

    fly fishing? Cool - I'm gonna sign up too or at least try,

    Screaming - how about 11pm Atlantic time  tomorrow?  I'm in the most eastern time zone, I think, so I'd be the latest. I'm going to go down to the ocean at one of my favorite spots, take a picture then scream. Ill post my picture. If others did that it would be quite cool! 

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  • audra67
    audra67 Member Posts: 521
    edited January 2014

    PatAlameda-

    I just signed up to fly fish!  I LOVE flyfishing!  Ours is in Boerne, Texas and I LOVE that area too...the hill country, lots of shops and restaurants and gorgeous!  Thanks for the info!  Wish we could all go to the same one though....everyone in Texas sign up!  It's in April!!

    I took Phenergan and Ativan every 6 hours during the night even as I've had more nausea this time than EVER...and OMG...I just woke up...slept 14 hours!!!!  Must have needed it! 

    Feels good to be on the home stretch....!

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  • Phebe38
    Phebe38 Member Posts: 197
    edited January 2014

    hi everyone: I have no strength with this chemo Texatere and Herceptin. I have sore joints and muscle aches. During infusion I ice my toenails and fingernails with ice pack gel, not ice. I have no problems with my nails. The nurse was the one that suggest I use ice pack gel. She taped the ice pack gel on my toenails but with the fingernails She put my fingernails in between the ice gel. No problems with cracking or breaking off and it's not ice cold. Sorry can't respond to anyone later

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  • audra67
    audra67 Member Posts: 521
    edited January 2014

    Forgot to say this earlier- MY MO said that the Tamoxifen blocks all estrogen, so if wine creates estrogen it will block effects of that too...does that make sense?

    It seems they all say different things to all of us and none of them really 'KNOW"....just a crapshoot I guess.

    I am going to rely on God and He will take care of me.  Otherwise I would go crazy from internet articles, tv shows, peoples opinions, and remarks...

    Happy weekend!

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  • QuirkyGirl
    QuirkyGirl Member Posts: 383
    edited January 2014

    Phebe sorry to hear you're so wiped out.  

    Audra you sound you are in a great place and I'm truly delighted for you.

    Pat you're just too cool for words. If I had the money and vacation, I'd sign up.

    Had my Neulasta shot today and enjoying the break before the big SE kick in.  "Nesting" for them and had enough entry to wash my sheets and mend a quilt.  It's the small comforts that make such a difference.

    Hugs to all I missed. Steriod rush is wearing off until the next dose.

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  • Palameda
    Palameda Member Posts: 259
    edited January 2014

    Quirky- the fly fishing is on a weekend and it is FREE! All equipment and everything! That's what's so incredible about this opportunity: unfortunately it's a lottery, since it is such a deal. I hope I get in. Sorry you're tired Phebe, me too.

    Depressing: they just sent me a booklet of the SE of rads. Cripes, here I am doubled over with intestinal cramps, and for my relaxing reading on the couch here's what's coming at me for my next phase.

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  • smrlvr
    smrlvr Member Posts: 422
    edited January 2014

    Audra, so happy for you that you are in the home stretch.  Are you having rads?

    I am into a big scream as well, thank you, Wally.  It snowed all day again here and I am sick,of it.  

    Sorry for all of you who aren't feeling well; Pat and Phebe.

    Tammy thank you for your kind words.

    Pat, thanks for the fly fishing tip.  I checked it out and I am going to apply.  Ours is in the Pocono mountains of Pennsylvania.  My husband is really into fly fishing and he would live it if I got into it. It sounds really relaxing.

    I just wish we could all go,together.

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  • QuirkyGirl
    QuirkyGirl Member Posts: 383
    edited January 2014

    thanks for the clarification, Pat!  It looks great and I just applied. : )

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  • wallymama
    wallymama Member Posts: 146
    edited January 2014

    Ok- 11 PM Atlantic time is 10 PM Eastern, 9 Central, 8 Mountain, and 7 Pacific.

    Everyone in for a group scream tomorrow night

    ??

    My front teeth had gotten really sensitive to hot or cold for awhile, but it's gotten better finally. Just keep using a sensitive formula toothpaste and hopefully that will help.

    I checked out the fly fishing trip, but I'll have to print an application because the online one doesn't seem to be working. But it's not until Oct. so there' plenty of time. That really does sound like fun. I love fishing although I've never fly fished before. Can't fly fish for catfish, and that's what I really like to go after.

    Pat, Phebe, sorry that you're both feeling bad this weekend.

    Audra, hope all that sleep helped you to get over the nausea. Try to stay awake to scream tomorrow.

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  • lisa137
    lisa137 Member Posts: 569
    edited January 2014

    I wonder what would happen if we could start a movement where people went out once a month at a designated time and just screamed "FIND A CURE!" Imagine if we cold get enough people so that once a month it was literally the scream heard round the world.

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  • lisa137
    lisa137 Member Posts: 569
    edited January 2014

    @wallymama I love to fish for catfish too! And they are my favorite fish to eat, once caught, as well.

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  • jab
    jab Member Posts: 220
    edited January 2014

    Im in - That;s tonight 11 Atlantic?

    Today is my 50th birthday so a bit of screaming might be in order....

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  • BigT16
    BigT16 Member Posts: 100
    edited January 2014

    Happy Birthday JAB!!!!!!

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  • audra67
    audra67 Member Posts: 521
    edited January 2014

    Pat and Phebe- I am feeling like crap too, very weak and nauseous this time...

    The fly fishing sounds so fun! 

    I am thinking about getting an MRI of my liver anyway.  When first got the scans it showed 2 spots they didn't know what they were...4mm and 7mm..all the Dr's said no worries, everyone has them...and my MO said we would rescan when done to see what happened to them or if they were still there..

    Now at the final chemo he said no scans for 2 years from surgery!!!  I would like to know.  if they went away, they could've been cancerous ,right? or just things that go away...if they are still there, then non cancer and ok too?  what is the down side?  I am just wondering how they know you have a mets if they never look at what was there after chemo?  Or do they just not care and wait and see is the modem operando for them? By then it would be too late?

    What do you all think of that?  Am I being paranoid or should I just not get the scans.

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  • QuirkyGirl
    QuirkyGirl Member Posts: 383
    edited January 2014

    Happy 50th JAB!!!!!!!

    Audra - we are a similar diagnosis and my MO isn't doing any scans at all because of the lack of lymph node involvement.  She'll only do them in the future if something comes up that indicates the need.  I'll see her or my BS every 3-4 months for two years and they'll be keeping an eye on me.  I'd feel better to have at least one scan ever but apparently my diagnosis just doesn't warrant it.  My two cents is that you probably don't need them because everything really is fine.  However, if its going to stress you out not to have them, I'd have them.   

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  • Bec65
    Bec65 Member Posts: 312
    edited January 2014

    Happy birthday, JAB!

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  • Amazonwarrior
    Amazonwarrior Member Posts: 485
    edited January 2014

    Jab: Happy birthday! Doing anything special? 

    Pat/ Phebe/ Audra: Unfortunately, I am joining the 'I'm feeling like crap' club. For the past couple of days my energy level just plummeted. Not sure why. I am in a bit of a panic mode, because I developed allergic blisters around my port / picc and the incision area looks angry red.:( I pray for it to get better. I don't want to have another infection. My next chemo is coming up this Tuesday and I don't want anything to compromise that. The weather sucks too. We are having a bit of a blizzard with gusty winds and the temperature is dipping. It's supposed to be -16 C on Tuesday. Brrrrr. I am dreaming of a sunny, warm beach! 

    Wally and others: I am in for the scream today. However, I have to see if I can keep my eyes open until 10 pm because of my lack of energy. I usually go to bed around that time, but yesterday I was in bed by 7pm!!! That was really weird! Am I fighting something or is it a chemo SE?

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  • jab
    jab Member Posts: 220
    edited January 2014

    got attacked by a dog today. It swelled and bled immediately. I'm not exactly sure what to do, as it isn't that significant and I have had my tetnis recently. If I get rabis shots chemo wil get put on hold, yet I'm pretty sure rabies is not an issue. Humm. 

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  • Amazonwarrior
    Amazonwarrior Member Posts: 485
    edited January 2014

    jab: So sorry to hear about the dog atacking you! Are you OK? Was it your dog or a strange one? Are you going to see a doctor about it? I hope you feel better.  

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  • Palameda
    Palameda Member Posts: 259
    edited January 2014

    Jab, Happy Birthday, and please call the doctor. My cat bite infection was serious. Way beyond the rabies issue is the infection issue with your compromised immune system. I had neulasta shots, so I wasn't that weak, but I'm concerned...

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  • QuirkyGirl
    QuirkyGirl Member Posts: 383
    edited January 2014

    jab please call your doctor right away and keep us posted

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