Illinois ladies facing bc

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  • [Deleted User]
    [Deleted User] Posts: 4,011
    edited August 2011

    Marsha - My Onc...years ago suggested Lipoic Acid (OTC supplement) for Neuropathy. You may want to ask your Onc about it. Sorry you have to deal with it. BC - the gift that keeps on giving...sigh!

  • lago
    lago Posts: 11,653
    edited August 2011

    Marsha I was told it can take along time for it to go away and in some cases it doesn't. My left heel is still numb especially on humid days. I wake up and I know what kind of moisture will be in the air. Yesterday my heel was the numbest. This morning not so bad. Right now, very numb again.

    I too am getting concerned I may have to live with this but it's still only been 7+ months PFC.

    Zap I thought that was the article you were talking about. I too read it in the Trib this weekend.

  • ATeamNana
    ATeamNana Posts: 224
    edited August 2011

     Lago -      I will check into that supplement...thanks for the info... Sept 14th I have mamo on both sides and follow up with surgeon...I will also give my OC a call I had not heard of that supplement...the last time I seen OC he said B complex...No other suggestions...

  • [Deleted User]
    [Deleted User] Posts: 4,011
    edited August 2011

    lago - Best wishes tomorrow!

  • MaryjRN
    MaryjRN Posts: 43
    edited August 2011

    So does the chemo neuropathy go away? 

    Jenn...4:00am is my new norm! 

    Susan(Zap)...thanks for the link.  Great article.

    Off to fix some dinner.  Had dh cook out some chicken breast and small steaks yesterday.  We will use them for the next few meals.  I don't mind reheated/microwaved food at all.

    Have great days, ladies!

  • lago
    lago Posts: 11,653
    edited August 2011

    Here is a good link on chemo induced Neuropathy (NCI) linky 
    I did take acetyl-L-carnitine (read section:Clinical Research Ahead) on chemo and I do believe that's why I only have it in my left heel. I still take it because it's a memory booster. I swear it works.

    Marsha don't you mean Laura?

  • Madismommy719
    Madismommy719 Posts: 377
    edited August 2011

    I'm taking my daughter to see Taylor Swift tomorrow (bought the tickets for her as a bday present 3 weeks before my BC ride started) and just found out my mom and aunt split the rental of a car and driver for us!!! I'm SO excited!!!! I have been terrified if I'd be able to handle driving the hour there and hour home since I'm still not back to normal after my surgeries..... YAY!!!!

    Be back later, I'm going to a movie with my girlfriends.... I almost feel "normal" again right now.... Or atleast my old normal.... :)

  • ATeamNana
    ATeamNana Posts: 224
    edited August 2011

    Yes....so sorry....Laura.....I was reading both posts and got confused who said what....after reading again I see it was Laura that recommended the supplement....(Chemo brain still kicks in also...or possibly age relatedSmile

    The linky has some very good information....I had tried to search for neuropathy but this explains it much better than what I had found.

    Thanks everyone!

  • onward
    onward Posts: 229
    edited August 2011

    My last chemo of taxol was on Feb.2. I still have numb toes and fingers. I dont even count it as a cancer thing anymore. The list was getting too long and had to be moved off to include new side effects..lol.  :  )

    Does no one take aromasin? I have a months supply I would like to pass on to us illinois girls.

  • determined3
    determined3 Posts: 41
    edited August 2011

    onward, did you take anything for the numbness during taxol?

  • ATeamNana
    ATeamNana Posts: 224
    edited August 2011

    Madismommy....how thoughtful ....a car & driver...woo hoo!

     Have fun!!!!!!

  • Char2010
    Char2010 Posts: 362
    edited August 2011

    Lago - Thanks for the link to the article about chemo induced neuropathy.

    I finished chemo June 2010 and have been dealing with neuropathy in my feet (especially toes) since then.  Have been taking neurontin for six months now and can't say it is really helping.  Onc keeps on saying that it will go away.  Sure hope so.

     Lago - How did the interview go?  I was holding my fingers crossed.  Would have done the same with the toes but they don't feel that good :-)

  • lago
    lago Posts: 11,653
    edited August 2011

    Interview is tomorrow. Also got a call today from a headhunter about a possible temp to perm design job. She sent my stuff over. Lets see if I can  land an interview. Certainly pays better than retail.

    Char how are you doing? BTW I can't cross fingers or toes in the morning and sometimes no toes late in the day. Anastrozole stiffness Tongue out

  • ritajean
    ritajean Posts: 4,042
    edited August 2011

    Wow!  This is a busy place.  I'm having trouble keeping up with everyone, too! 

    I was also glad to see the post from WendyTY.  I visited with her for just a few minutes today and she looked so much better.  It was so good to see her up, moving, and a little stronger. 

    Zap...so what book did your book club discuss today?  I am currently reading "The Forgotten Garden" by Kate Morton, and I'm really enjoying it.

    The little country club that I belong to in LeRoy had a Golf for the Cure event on Saturday.  Dave and I played in it and had so much fun.  It was a true fundraiser.  They made $5,000 for Susan G. Komen.  That's just outstanding for such a small club!  It's always so good to know that people continue to give.....hoping beyond hope that their money will help find that cure! 

    Marsha, I can't imagine how terrible that was to lose your toenails during chemo.  I don't think I've ever heard of that happening to anyone else.  OUCH!  You are indeed one tough gal!

    Thanks for the app suggestions for my smartphone.  Keep them coming.  I'm going to check them all out.  I have found a really neat coupon one that offers lots of discounts at all types of stores.  If I understand it correctly, you just present your phone coupon and don't need a paper one.  One of the coupons was $5 off a $15 purchase at Barnes and Noble and there were lots of restaurant coupons.  I'm just amazed at what this phone can do.  It's just called COUPONS.  Maybe tomorrow I can get some of your suggestions downloaded. 

    Right now, I'm off to read some more in my book.

    Everyone have a great Tuesday.

    Rita

  • lago
    lago Posts: 11,653
    edited August 2011

    ritajean I lost several toenails and one of my big ones had to be taken off. Every single toe & fingernail lifted. They hurt too. More gross details that I won't go into. I even have pictures but you really don't want to see those linkies.  Tongue out My dermatologist said I had a "really bad" reaction to the taxotere in my nails. I guess when I get the rare SE I don't fool around.

    Wendy I really hope you don't have it this bad. To be honest it was better when the nails fell off. When they were just lifted there was only on pair of boots I could wear.

  • determined3
    determined3 Posts: 41
    edited August 2011

    lago..even though your nails lifted...did they stay on? i know you said that your tonails fell off, but i was wondering about the nails too?

    thanks

  • ATeamNana
    ATeamNana Posts: 224
    edited August 2011

    Sorry I did not explain too well, I did not lose all toenails....just the big toes...but the other all lifted and were really thick and Blue..my fingernails were not as bad...I did not lose any of them...they just looked funky and thick. 

    But....they look great now...so they did get healthy again...just numb now...and I'm hoping that will go away one day too.....It was still worth it....I feel fortunate the tumor shrank and am now NED....

  • joan888
    joan888 Posts: 711
    edited August 2011

    Well, I tried to keep up with you ladies while traveling this past week, but sometimes, I think it is a full-time job!  LOL.  I got home this afternoon and have put off the laundry and unpacking for now.  Funerals always turn into family reunions so it was actually fun.  Then off to my DH's family reunion which was alot of sitting around and eating.... overcooked buffet food.  Am so glad to get back home and back to a more normal diet.

    Love how everyone is sharing and helping each other on this journey.  WendyTy .... so glad you are feeling better.  NavyMom... let us know how the tatoo job comes out.  I have to visit with my PS next month to discuss nip options.  Zap.. I hope I get time tomorrow to read that essay! Sounds so interesting.

    Wonderful cooler weather this week.  Thinking of you all.  Good luck to Lago for th interview tomorrow.

  • lago
    lago Posts: 11,653
    edited August 2011

    Determined I did not lose any fingernails but only the thumbs and pinkies are almost back to normal. The other 6 are still lifted and a bit tender. Toenails look like crap still and several are still lifted.

    Marsha how long before your nails became normal again? I'm finding it's taking me a bit longer to recover from things than most. Fluid retention finally seems to be getting better.

    Thanks for the good luck wishes everyone.

  • wendyk13
    wendyk13 Posts: 1,458
    edited August 2011

    Morning! Lots of rain, but at least it's cooler! In the 70's tomorrow and Thurs with sun....heaven!



    Lago...good luck with the interview and with that new lead!



    Mad/Jenn...my niece and her daughter are going to the concert too! Have a wonderful time!



    WendyTY...waving at you!!!!!!



    Nails....boy, does chemo do a number on them! I don't remember my toenails doing anything but my fingernails were crappy to start with but they grew long and hard and beautiful while on chemo. When it was just Herceptin they went back to really crappy and now just plain crappy. I cannot imagine losing nails or the lifting. I have never heard tho that this is permanent...it eventually resolves. Eventually. Hate that word.....



    Learned something yesterday off-topic...and also take this with a grain of salt. Had to have the relay

    Board in my frig replaced yesterday as the freezer wasn't working. Was chatting with the guy we always call about those french door frig's which I love. Told me that those are the ones that they get called to fix the most as the doors start to bind and you don't notice that they aren't closing so if u have one, check it once in awhile. Also...Samsung/LG/FischerPykel(sp?) are pretty darn good BUT parts come from NJ and can take up to 3 weeks to arrive. Not good if it's a frig! Mine is GE and Altho he didn't have the part in his truck we went to get it and was back in 15 minutes. So...just thought it was interesting. Still love that $3200. Samsung tho with the French doors and the computer/tv in the door!



    Have a great Tuesday all! Rita, I will check out that app....

  • ATeamNana
    ATeamNana Posts: 224
    edited August 2011

    Lago...Good Luck today with interview....

    Regarding nails...It does not seem it took long for them to start doing better once I stopped treatment...maybe 3  -  6 months.....

    Have a great day everyone!   I'm off to work...busy week...kids are coming back to school....and it is

    end of previous school year audit...yuck...but it too will pass.....

  • lago
    lago Posts: 11,653
    edited August 2011

    I would love a computer in my fridge. I look up recipes all the time. Granted an ipad would be a less costly (and more fun) solution.

  • Madismommy719
    Madismommy719 Posts: 377
    edited August 2011

    The nail s/e is starting to scare me, is their one particular chemo drug that causes the blackening, etc??? Does the possible s/e list ever end??? Oh my goodness..... Not sure how I'll do if my nails fall off, OUCH!!! :(



    Joan....welcome home!!!



    Lago...maybe a perk of one of these jobs will be an i pad? How sweet would that be! I love mine.... Best gift ever!



    Wendyk...I have a Samsung fridge, we call it "the beast" because it's LARGE (especially in my little kitchen) no tv or computer though.... But I LOVE it.... :) it's French door/bottom freezer....spent too much but I'm glad now!



    Rita...talking about the $5000 for Susan g koman, does anyone do any of their local BC events? I'm not a runner....or really a long distance walker (bad knee) but I'm hoping to find something within my community to help fundraiser for BC.... I do a 5 mile "step out" walk for diabetes every year (I hope I can handle 1/2 of it this year?) my cousin's 8 year old son was diagnosed with diabetes at age 5. I'm hoping 2012 after I'm past chemo that I find my way to contribute.... Just curious if anyone knows of something other than marathons and 40+ mile walks....



    I went to the Look Good, Feel Better class yesterday.... It was a great class and met a few wonderful BC sisters from my area.... We all cried several times when talking about wigs and losing our hair. :( The only thing they didn't really teach us do was scarf tying....I'm all thumbs, it's crazy and I thought this class would help me with it. I'm no better.... I am going to purchase another wig though, nothing crazy expensive but different from "me" I think i'm going to embrace the wigs and have fun with them??? My hope is by the time my real hair starts growing back I'll be sad to let go of my wigs?!? Maybe??? Lol....

  • lago
    lago Posts: 11,653
    edited August 2011

    Mad Mom all the information they cover at those sessions are online. Even the stuff they don't cover like the  scarf thing. I also went to two sessions. The 2nd session I asked them specifically to go over the scarf thing. So many women are more focussed on wigs (and of course makeup) that they don't have enough time to go over the scarf purchasing/wearing. There are also videos on youtube.

    http://lookgoodfeelbetter.org/beauty-guide/new-hair-looks
    There's even a guide on how to make a head wrap from an old tee shirt!

  • 2ns_Jenn
    2ns_Jenn Posts: 95
    edited August 2011

    Jenn -

    I have participated in the American Cancer Society Making Strides walk - typically about 5 miles and usually mid-October.  There are many different locations in the area & you can search for one on their website:  http://makingstrides.acsevents.org/site/PageServer?pagename=MSABC_FY12_findanevent

    I have also particpated for the past 8 years (both as a walker and a volunteer crew member) in the Avon Walk for Breast Cancer.  You can walk either 26.2 or 39.3 miles over the course of 2 days.  That is always the first weekend in June & it is held in downtown Chicago.  As a walker you have to commit to raising $1800 but as a crew member you don't have to but can raise money.  I believe that crew is almost closed for 2012 so if you are interested you should probably move quickly.  Their site is http://www.avonwalk.org/chicago/

    I know there are others that are held around Mother's Day (Y-Me maybe).

    How ironic that I participated in these events well before my diagnosis!  It is such a fulfilling experience and it meant even so much more this year to participate as a Survivor! 

    PM me if you want more info.

    Take care,
    Jenn

  • Rene23
    Rene23 Posts: 290
    edited August 2011

    WendyTY - Always such a joy to see you posting and feeling better. Good luck with the sleep issues.  I'm a night owl, but even I need my 6 hours a night.

    Susan - Thanks for the article.  I loved her last few paragraphs too.  

    Marsha - My neuropathy was a little strange.  I had a lot of joint pain from my AI's, so I really didn't notice much in the way of numbness or tingling, until maybe my 3rd year of being on them.  I started getting numbness in my legs, from right above my knee down the front of my lower leg.  It got to the point that my doc ordered an EMG test to check the nerves.  All was fine (and that test was a trip), and after a few months the numbness went away.  I had weird bouts of extreme back itchiness that eventually went away that I also attribute to my AI's. 

    Lago - I'll have to look into that acetyl-L-carontine supplement.  My memory can use all the help it can get at this point.  It always makes me feel better to read about other people having memory issues from all this stuff we go through. I know its not just me!   Good luck on the interviews. :)

    Madismommy - Omg. I took my daughter and her friends to N'Sync concerts several times.  Too be honest, the other moms and I really enjoyed them.  Those boys really could sing and dance - especially Timberlake.  One show, they did a whole Beatles medley, which was hysterical because all the moms were on our feet dancing and singing, and the girls were all looking at each other like.. "huh?"  LOL.

    Having a HUGE problem with my family - my cat family, that is.  My 2 cats have suddenly decided that they HATE each other with a fiery passion.  I have to separate them, or they go at each other with intent to kill in their eyes (and teeth and claws).  I have no clue what started this.  I was talking to my daughter through the backdoor three nights ago and the cats were both looking out the door with me, suddenly they went for each other.  It was a a huge, snarling and hissing ball of fur rolling around!  They've lived together for around 3 years or so, and only once have they acted like this towards each other, and that only lasted overnight, then they were back to normal.  "Normal" for them is, compatible, but not overly friendly.  I'm at a loss, and both my DS and I are very distressed about this.  The DH just shrugs his shoulders, "They're cats..."  

    Any suggestions would be appreciated.  This morning, I actually have to lock one up so the other one would come out and eat, and hopefully use the litterbox! 

    Off to see my b.s. today and hopefully get the date for my proph. mast set.  Then on to work afterwards.   Have a great day, everyone!

  • makmak
    makmak Posts: 374
    edited August 2011

    Sitting at Rush waiting to register for my appts today.. Realize why I so like where I usually go.. This place us way too large and impersonal and crazy for my taste.. Of course I'm sure the drs will make it worth while.. Have 2 hrs between docs so hopefully their caf and kindle will keep me busy!!



    Otherwise nothing exciting going on... Been reading and saying hi to everyone.. Hopefully some if you are out enjoying this beautiful weather!

  • zap
    zap Posts: 1,850
    edited August 2011

    Makmak, I hope you get lots of good encouragement today.  Lago, hope the interview provides a job opportunity you would love to have!

    Rita, that book sounds so good!  We read The Glass Room but it was a very dark book. IT was a page-turner for me, but definitely dark and some of the members thought it was too dark.  My book group is great.....we raise our  voices, get emotional and then all hug each other when it is time to go home.  We really like each other but we are opinionated!  The next book we are reading is The Book Thief which is a very popular book and is read by people of all ages, so less controversial.  We have a GROUP on the computer (like the addy list) and I put The Forgotten Gardenon as a suggested read  after reading the review.

    Hope all are well and enjoying this lovely day!

  • ATeamNana
    ATeamNana Posts: 224
    edited August 2011

    Rene23...I hope my neuropathy goes away eventually also....

    Regarding the Tshirt wrap...I wore that alot ....I even purchased some cheap turtlenecks....(it was wintertime) and bought two and wore one and made a turbin out of the other one....you just need to cut off the bottom 6 - 8 inches off the bottom of the tshirt/turtleneck and you have a circle to work with...I can explain further if anyone is interested...I found it much more comfy & warm during the winter months....I added some bling with clips and such also....

    What a beautiful day in our neck of the woods today....I am definitely getting in some pool time this evening....wish you all could come get in with me. (I won't be skinny dipping- it is not a pretty sight:)

     susan...book club sounds like fun.

    Have a great day all!

  • WendyTY
    WendyTY Posts: 94
    edited August 2011

    Hey girls! I'm about ready to pass out but I wanted to post first. The doctor gave me sleeping pills to help combat the side effects of Tykerb. I took one last night. I woke up at 4 again. So they didn't help. I've felt out of it all day. I don't think this was how it's suppose to work.



    Rita and I were laughing at the book I wrote yesterday. She stopped over to deliver your gift. Thank you for the Fanny May chocolates. Chocolate makes everything better! I also enjoyed all your responses.



    Zap I'm going to read the essay when I wake up.

    Lago Good luck with your interview. Remember an interview is all about removing their doubt. Let them know you are the person for the job.



    Darn my phone doesn't allow me to do spell check and my brains barely functioning. Teachers forgive me.