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More Tips (and a Shopping List) for Getting Through Chemo

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  • lemonjake
    lemonjake Member Posts: 342
    edited February 2009
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    Sorry this will be short (I pay per minute + megabyte).

    1. Periods. It varies, it varies, it varies. Some women have their periods throughout.  Others, like me, had them for the first month or two and then... well, lets just say that I have no idea when my last period was. To be honest, I'm a little sad that it's gone, and that I didn't know the "last one of my life" was the last one of my life.

    My hot flashes lasted a few months, of varying intensity. Somewhere on my blog (www.rockthebald.blogspot.com) I discussed the various KINDS of hot flash I had. I learned to treat them as a form of biofeedback as they were often associated with stress or anxiety. So when I felt one coming on, I used it as a reminder to pause, and take a couple deep breaths.  I'm much calmer now.  I haven't had a hot flash in a long time. I'm not sure why, but it could be because I'm happier and more relaxed. Or maybe my body's just "done."

    2. Chemo brain. In my experience, and despite my early and complete DENIAL that such a thing existed (I was convinced that the diminished mental capacity had to be a function of stress, disrupted sleep patterns, etc.), I have to say, "Yep, it exists." For what it's worth, though, my mental functioning WAS restored. 6 months post-chemo, I'm still a little more forgetful and inarticulate than I recall being, but I'm definitelyin the bounds of normal. In the throes of chemobrain, however, I'd have these horrible moments -- like when your computer is trying to access the CD drive and it can't.  Just spinning, helplessly,pointlessly.  My brain was like swiss cheese. Sometimes I'd go to recall something and I'd be fine. And other times, I couldn't even remember what category of thing I was trying to call. NOT PRETTY. but also, NOT PERMANENT (in my experience).

    3. Blurry vision. My vision was a mess during chemo. It improved afterwards but it is still not what it was. That could be a function, however, of the shift my eyes would have made anyway at about this age (43).  

    Hey, Nico!  And hey to all the newcomers.  I am observing my one year anniversary of my diagnosis this week.  In this year, I've gotten a Fulbright, published a book, and moved to South Africa where I am loving loving loving my life. (It was also a year where my dad almost died, my mom got really sick, and I had to call the police twice when a friend came off the rails.)  I feel for everyone who is just setting out on this ... this path/journey/experience.  It taught me things I didn't know about myself. It highlighted strengths and weaknesses I didn't know I have. But it also brought some (more) wonderful people into my life and for that, I'm oddly grateful.

  • EvaPerone
    EvaPerone Member Posts: 14
    edited February 2009
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    To CJ42: I am on dose dense A/C (just had 3rd round) and I have trouble seeing the first week each time (cannot drive, or even see my laptop at times), but it seems to clear out in the 2nd week. My center sent me to have my eyes checked and they said nothing wrong, definitely the chemo.

    Can anyone tell me if Taxol does the same to the eyes? I'll be moving to weekly doses x 12 after one more A/C. I do admit its kicked my ass!

    I've started with night sweats but haven't had a hot flash yet. My period didnt show as expected, and feeling a bit nostalgic already (Nico: can relate) - most primal sex of my life was on my period (sorry if TMI).

    And I am a believer in chemo brain as I travel and live overseas and dont lose things ever - and I've lost credit cards, house keys, glasses, and my cancer book (all test results, phone #'s, etc.) in the last few mos. Cannot comprehend work documents at times, just have to put them away and come back.

    Finally, Nico congrats on your Fulbright! What an achievement! Eva

  • frank2008
    frank2008 Member Posts: 1
    edited February 2009
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    Hello , I am Franco Fiori, I live in Italy, Milano.

    I really want to suggest you an alternative therapy which I am convinced can help against cancer and can help overcome side effects of chemiotherapy. It's alex chiu's method with magnets and herbs. Check this out: WWW.ALEXCHIURINGS.COM

    My testimonial and pics are on that site, on testimonial page.

    It's not scam, it really works , it gives strength to all cells and realign them.

  • lemonjake
    lemonjake Member Posts: 342
    edited February 2009
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    My eyes were worse on A/C than on Taxol. They no longer burn (I finished chemo 6 months ago), but my vision isn't as good as it used to be, especially when it comes to reading small print. That could be due to age, though.

    Re: Sex.  I am happy to report that while the libido (and the body's natural lubrication) went away, it also came back.  I kind of took the approach of "use it or lose it." I know that it's not that simple. But while it is one thing to say goodbye to periods, it's another thing to say goodbye to enjoying sex. Of course, one doesn't feel terribly sexy when one is hairless and anemic.  But as the body healed, my sex drive returned. I'm starting to feel like my old self.

    There are other threads that deal with this in more detail. And Eva, for what it's worth, I kind of think my body is still going through some of the cycles, I just don't have my period. So don't write off the primal sex just yet. It may be MIA for awhile, but you just might get your sex groove back,  too! (God, I must say, though. It is making me cry thinking about those of you who are going through this now.  I just feel for all of you who are starting chemo. It is hard. There is so much that is unknown, that can't be known, that only time will tell.  You WILL come through this, though. I promise. I cannot promise a cure. I cannot promise it will be easy. I can only promise that we do have what it takes to do this, whatever "this" turns out to be.)

  • Nico1012
    Nico1012 Member Posts: 1,152
    edited February 2009
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    Eva ~

    WHOOOAAA!   I WISH I had a Fulbright!!  That's Rock (the brainy one) who has the Fulbright.

    Nico

  • crazy4carrots
    crazy4carrots Member Posts: 624
    edited February 2009
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    Here's something else I just thought of:  While on chemo, start using a toothpaste for sensitive teeth, because you may find that your teeth will be very sensitive at your first cleaning following tx.  I didn't do that, and the hygienist couldn't finish her work at my first appt.  So I started using Colgate Prevident, and 4 months later I not only had the best checkup ever (!) but my teeth didn't hurt!

    This is not a special endorsement; there are severral other toothpastes you could use as well!

    Linda

  • diamonddarter
    diamonddarter Member Posts: 1
    edited March 2009
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    Thanks for the tips, and yes we are funny.

  • Nico1012
    Nico1012 Member Posts: 1,152
    edited March 2009
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    Bumping in honor of Rock ~

    Nico

  • bethr
    bethr Member Posts: 4
    edited March 2009
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    I'm so glad I found this post!  Chemo starts on March 27th... 

     Thanks to you all so much!!!

    Beth

  • lemonjake
    lemonjake Member Posts: 342
    edited March 2009
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    Nico, you're the best.  How are you doing these days?

  • dmknanny
    dmknanny Member Posts: 1
    edited March 2009
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    Great list!  I opened a boutique for women living with cancer, called LifeChanges, after my diagnosis of stage IIIA IDC in Dec 06, bilateral mastectomy, TRAM flap reconstruction, dose dense chemo and radiation.  Your list ROCKS!  I hope you don't mind if I print it out and distribute it to my customers who come in pre - or during - chemo - it will be a great help!  And yes, credit will be given......with pleasure!

    Also, may I adapt if for my website, www.lifechanges4women.com?

    Thanks so much

    Diana

  • lemonjake
    lemonjake Member Posts: 342
    edited March 2009
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    Be my guest!  The three biggies:

    1.  There are patterns, trends, shared experiences. We learn a lot from the wisdom of women who have gone through this before us.  At the same time . . . 

    2.  Everyone is different.

    3. When in doubt, try to keep your body moving. Go for walks, even short ones.

  • Nico1012
    Nico1012 Member Posts: 1,152
    edited March 2009
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    "We learn a lot from the wisdom of women who have gone through this before us."

    HOW TRUE!

    Nico

    Hey Rock!

  • Melissa1971
    Melissa1971 Member Posts: 1
    edited March 2009
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    Hi Ladies,

    I had my second round of AC last week and for the past couple of days have been experiencing terrible heartburn/backpain. I have taken pepcid complete and am eating well (very small meals) but the pain is terrible. It is in my upper back...feels like bottom of throat area. Anyone else have this experience? Any tips welcomed. Other than that my other side effects are being managed well. I didn't have this experience the first time around....

  • crazy4carrots
    crazy4carrots Member Posts: 624
    edited March 2009
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    Oh Melissa, I feel for you!!  It certainly sounds like severe heartburn but please call your onc about it.  These chemo concoctions can really do a number on your digestive system.  I'm sure s/he can prescribe something stronger, as the pepcid complete just isn't doing it for you.

    Hugs, Linda 

  • Nico1012
    Nico1012 Member Posts: 1,152
    edited March 2009
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    Melissa ~

    Several sisters on the boards used Prilosec OTC for heartburn and acid reflux with good results.

    Two tabs is equivqlent to the prescription amount and comes out to about half the cost of a prescription.

     Rock ~ Doing well these days. Slowly but surely returning to life in the "new normal" and enjoying it!

    Nico

  • Nico1012
    Nico1012 Member Posts: 1,152
    edited March 2009
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    Bumping for the newbies!

  • Nico1012
    Nico1012 Member Posts: 1,152
    edited March 2009
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    Bumping in honor of ROCK!

  • chelev
    chelev Member Posts: 417
    edited April 2009
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    Hi, Ladies.  Starting my first of 4 rounds of TC tomorrow.  Was terrified, now just anxious and want to get it over with, so I can begin the countdown (I only have three more, etc).  Your tips and advice have been wonderful and the checklist was really helpful.  I'm hoping I don't have a lot of SE, and did the most traumatic thing already - cutting my long hair very very short.  Wigs are on order, have some hats and "bangs" I can put into the hats, and as I'm getting used to the short hair, you know what?  I'll probably rock the bald head on occasion.  My biggest fear, and this may sound stupid, but I am terrified of the actual finding the port process, doing the initial stick, etc.  I had my port put in on Friday and I'm still really bruised (I bruise very colorfully and painfully) and tender, so I think that's my largest obstacle to get over.  I've got the anti-anxiety meds (started last night), and am taking the steroids, started this morning.  Wish me luck and I'll keep you all posted!

  • Nico1012
    Nico1012 Member Posts: 1,152
    edited April 2009
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    chelev ~

    I too was terrified of the port stick the first time. Afterwards, I almost laughed from relief! The nurse sprayed some freezing spray on the port sight and I didn't feel a thing. There is also a cream called EMLA available by prescription that you can rub on the port an hour before the stick and it is supossed to be very effective at deadening the site.

    The bruising and tenderness at the port site goes away in about 2 weeks. Aftter a month, you'll hardly notice that you have it.

    I DO wish you the best of luck, and please keep us posted on your progress!

    Nico

  • chelev
    chelev Member Posts: 417
    edited April 2009
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    Nico - thanks!  That makes it almost a little easier - I was hoping they would do some sort of numbing effect prior to the poking around part.  Trying to settle down and get to sleep, but the steroids have me jazzed still, and I've taken my ambien - trying to get it to work.  I haven't heard of Emla cream, but it sounds a little late now - maybe they'll just numb it good for me tomorrow.  I'll keep you posted how I do - once I get over this fence, it's all down hill from here - I just don't climb very well, but I'm determined to do it, so this hilltop isn't looking so fierce after all!

  • Nico1012
    Nico1012 Member Posts: 1,152
    edited April 2009
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    chevlev ~

    THAT'S the spirit! You CAN do this, YES YOU CAN!

    Nico

  • chelev
    chelev Member Posts: 417
    edited April 2009
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    Nico,

    Yes, it was mostly all in my head!!!  They sprayed a freezing solution on it, were very gentle and did the stick into the port and it wasn't bad at all!  It actually was cool that they could take blood and then start the infusions right away.  I'm on Taxotere and Cytoxan and while I'm feeling tired and a little wired (must be all the 'roids), I'll see how I do once they wear off.  Best part . . .one down, and three to go and the next one is scheduled for the 23rd, so hopefully by June 1, I will be done with this part and can move on with my life!!  Oh, and a very nice lady who was there with her husband saw me sort of freaking out a little prior, and came over and told me she was leaving me with a tub of the emla cream, her husband doesn't use it anymore, so I can pick it up next week when I get my blood draw.  People are wonderful!!!

    Peace and love to everyone!

  • lemonjake
    lemonjake Member Posts: 342
    edited April 2009
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    Nico --  thanks for the love. I'm sending some right back atcha!

    And I'm with you, To all the newcomers . . . you can do this. You will find you have strengths that you didn't even know you have, I promise. (And it's okay to be afraid, it really is.)

  • Nico1012
    Nico1012 Member Posts: 1,152
    edited April 2009
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    chelev ~

    Yeah! One down! That's great about the lady with the EMLA cream, it's very pricey, and she's a sweetheart to pass it on to you. You might find that once the steroids wear off you'll sleep the first day away. Please, keep coming back to these boards with any questions or concerns you have. I would not have made it through chemo and radiation without the knowlwdge and support of the fantastic women here.

    "You will find that you have strengths that you didn't even know you have, I promise. (And it's okay to be afraid, it really is.)"  Rock, you are THE BEST, you really are!

    Nico

  • LindaYO
    LindaYO Member Posts: 4
    edited April 2009
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    Lost my hair again 13 months ago when I started Taxol.  Because of neuropathy, onc has switched my treatment to Gemzar; he says I might get my hair back.

    Now I'm not sure I WANT it to grow back.  I love being able to go natural (bald) most of the time or adding a wig when I feel like it.  Additionally, it seems people are friendlier and kinder when they see the bald head.  I may keep it off for good!!

  • Nico1012
    Nico1012 Member Posts: 1,152
    edited April 2009
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    Bumping for the newbies.

    Nico

  • lemonjake
    lemonjake Member Posts: 342
    edited April 2009
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    Nico-mania!! BUMP.

  • Nico1012
    Nico1012 Member Posts: 1,152
    edited April 2009
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    Bumping in honor of rock!

    Nico

  • lemonjake
    lemonjake Member Posts: 342
    edited April 2009
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    I am skipping, rather than bumping, because I am so very happy.  Skip for Nico!  (Boy am I annoying when I am in a good mood!)