Starting chemo January 2009?

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  • Renrel
    Renrel Member Posts: 497
    edited February 2010

    kmmd - I have always been blessed with good skin but you may be right, it may be even a little better lately.  And life is starting to feel fairly normal again.  I am more focused on trying to keep my posture and breathing in line with what I learn in yoga moment by moment than I am on anything to do directly with Canser.  I am continuing to try to fill my diet with canser fighting foods, particular green tea and tumerric and fresh fruit.  Weight loss is not going anywhere.  I think I am still eatting too much, even if it is mosly good.  I have never really needed to watch my weight and am having trouble getting into the mindset that I really can't just cheat a bit every day and still loose weight. 

    I need to run.  I am not dressed yet and DH and DC will be home soon with bagel and lox.  I need to finish packing for Florida and order a new set of glasses and contacts, and take DS to a b-day party.

     luv ya all, 

    Renrel

  • jrgolomb
    jrgolomb Member Posts: 1,236
    edited February 2010

    Hello everyone.

    Jilly G.  Oh , I would love to hear about your trip to Scotland.  My dd and I were just looking up a couple of possibilities.  Thank you.

    Kmmd-  I would have agreed with you about the complexion until a huge carbuncle (sp?) type mini red pod appeared on my fore head.  Oh my goodness...fortunately I have to excitedly say my bangs covered it!  Can you believe it?  BANGS!

    Today I had fun teaching teenagers ( yes, I have a screw loose!).  In spite of the full moon, the cabin fever inspired Michigan snow storm and many non morning people ,I enjoyed leading 25 teens through a class of exercising and sweat!  You know, many teens seem to not be morning people, I swear it is a genetic glitch that turns itself off- they can't seem to function very well in the morning- and then later around 25 years of age the glitch turns itself back on and the no longer teens   seem to be not so grumpy in the morning , or gosh, finally realize mom knows something and finally a conversation can be had. 

  • holtbolt
    holtbolt Member Posts: 625
    edited February 2010

    I'll have to catch up reading your posts later.. just wanted to let you know I am down in Nola.. my bilateral SGAP recon stage 1 was Tuesday... Had a rough night or two but feel 100% better now... they helped me with a shower and I've been walking around the halls.... So far so good, flaps are thriving... I haven't look at them too closely yet or my butt.... just taking tiny steps.... I should be discharged Sat and then stay in hotel through Tues.. fly home Wednesdy... hope you all are doing well... I now have Bayou Boobs.. lol

  • kt57
    kt57 Member Posts: 425
    edited February 2010
    HoltBolt AKA BayouBoobs:    Been thinking about you all week.    Thanks for posting.  I am so happy you have this behind you.    Can't wait to hear the whole story --perchance I find myself there some day.
  • jrgolomb
    jrgolomb Member Posts: 1,236
    edited February 2010

    Bayou Boobs---That's good. I like that. 

  • ktym
    ktym Member Posts: 2,637
    edited February 2010

    I'll second that, Bayou Boobs.  I had been pretty happy with my results, but that makes me a little jealous.

    Jess, I think you're next up at bat for recon

  • jrgolomb
    jrgolomb Member Posts: 1,236
    edited February 2010
    Yeah, Kmmd I am a little jealous too.  hm......how about great lakes ta tas!!?? or.........sleeping bear mounds???  or.......boobies from the winter wonder waterland......hm........Just doesn't have the same effect does it?   
  • ktym
    ktym Member Posts: 2,637
    edited February 2010

    No, but I like sleeping bear mounds

  • ktym
    ktym Member Posts: 2,637
    edited February 2010

    Jess, DH suggested we add Mackinaw Mammaries into the line up for a vote

  • PLUTZ
    PLUTZ Member Posts: 133
    edited March 2010

    Hi ladies! Glad everyone is doing well. just had my 1st physical checkup in almost 2 yrs. had a pap. hopefully it comes out ok. My ekg was fine and I had a bone density test done and it was good. Keep putting off my colonoscopy but my dr. says I need to get it done, so I will be getting a cal in the next week or so. ugh! Has anyone had this done? have a great week

  • Renrel
    Renrel Member Posts: 497
    edited March 2010

    Plutz, I haven't had a colonoscopy yet by my DH did for the first time this year.  He was due last  year but the doc gave him a pass saying he had enough stress for one year.  It was not bad.  The prep is a pain but he said the test was not bad and he asked for minimal drugs.  My PS told me that she enjoyed hers.  She said her doc gives really good drugs and it is one of the few times she, my doc, just relaxes and lets some one else do the work.  

     Just got back from a week in FL.  Not long enough and the weather was lousy, for FL, but it was still vacation.  Spent alot of time with DS.  We swam in the heated pool even though it never hit 80 while were were there and playing a card game I bought him called ratatatcat, that teachs card playing skills like remembering cards you can't see, probabilty and reading peoples faces.  Chemo brain was showing, I could not remember my two hidden cards a minute after I got them.  Kept giving away my best cards, but since DS is still learning the art of being a good looser, this was not such a bad thing.  

    I am thinking too much these days about recourances.  Already worrying about my next check up in May.  Luckily I found a podcast provider (is that what they are called?) with some pretty good guided meditations. Helps me sleep when my mind won't turn off.  

     Anyone read about that study that asprine can cut the chance of metastism by over 50%?  I have to ask my doc about that one. 

  • jrgolomb
    jrgolomb Member Posts: 1,236
    edited March 2010

    LOL kmmd.  That is a good one mackinaw mammaries. 

    Renrel---I know what you mean about the chemo brain.  Mine has been bad lately.

  • holtbolt
    holtbolt Member Posts: 625
    edited March 2010

    Hi Jewels... you guys are funny.....

    Just wanted to check in and tell you I am back home from NOLA with my bayou boobs and resting comfortably.  The whole experience seems like a dream ... like it happened to someone else... parts of it were rough ..... but I see hope and normalcy and yeah everything is bruised and scarred and bloody and I have a dented ass , etc. etc.. but I have new girls and the sun is shining in Indiana... one day at a time.... hope you all are doing well....

  • ktym
    ktym Member Posts: 2,637
    edited March 2010

    hotbolt: happy to hear all is well

    sunny and the snow is starting to melt.  

  • Renrel
    Renrel Member Posts: 497
    edited March 2010

    So glad you are on the road to recovery from a surgery that was really a choice and not a requirment.  All good, all around. 

    Yesterday I could swear I heard the bulbs I managed to plant last fall, even though I probably should not have been out digging earth so soon after my surgury.  Today it is a warm 50 degree and sunny.  I went outside, with no jacket and checked.  Sure enough my bulbs, the iris I believe are popping out of the ground.  Just a few inches of green of course, but the flowers will be here soon.  

  • jrgolomb
    jrgolomb Member Posts: 1,236
    edited March 2010

    HI.  Holt---it's gotta be great to be home an from NOLA sporting the new bayou boobs. I will be undergoing my exchange, but won't have a dent in my butt.  I am dealing with the anxiety of the exchange on a radiated foob- hope it heals well.......

    Renrel--Isn't it something when the plants start to grow?

    Kmmd---I expect to have new sleeping bear bounds on the 17th of March.  Leave it to the Dutch in Grand Rapids to NOT take St. Patrick's day off.  Yeah, isn't that a national holiday? Well, at least shouldn't it be?  :) 

  • ktym
    ktym Member Posts: 2,637
    edited March 2010

    Sure should be Jess.  Are you getting excited?  I'm getting excited for you.

  • Renrel
    Renrel Member Posts: 497
    edited March 2010

    I was right!  They started popping out yesterday.  My face book post said "With the blanket of snow pulled away my bulbs are starting to wake and stretch.  Their little green toes are peeking out from under the sheet of soil.  I just want to tickle them awake.:  Or something like that.

    Tomorrow is the little reception for the art and writing exiblit the hospital made from the submissions from patients and their caregivers.  I have one poem and one collage in the exibit.  

    I was wondering if any of your doctors proscribed any foods as medicine for keeping the cancer at bay?  When I read that things like green tea and Tumererik can be almost as effective as Tamozafin at keeping cancer a bay I have to wonder why doctors don't add it to our list of "drugs."  They are harmless to most people, as shown by the fact that we have been eatting them in our food for thousands of years and they may be of great benefit.  I am trying to figure out how to ask my doctor about this next visit without sounding combative or like a alterative therapies nut.  

  • jillyG
    jillyG Member Posts: 401
    edited March 2010

    Holtbolt, so glad you are doing well, I hope you have a speedy recovery :)

    Jewels, I requested a copy of my health record from the hospital and got the photocopies in the mail the other day.  It said that I had several areas of DCIS, as well as the IDC and something was written on the pathology I didn't hear about before.  It said "extensive cancerization of the lobules, involving 9/27 blocks, with a largest size of 1.8 cm".  First off, didn't know cancerization was a word, but really not sure what that means.  Do I have LCIS or ILC as well?  I see my surgeon on Friday for a routine follow-up, so I am going to ask about this.  Any thoughts ladies?

  • jillyG
    jillyG Member Posts: 401
    edited March 2010

    Oops, saw something else, it states "The E-cadherin stain on C6 demonstrate cancerization of the lobules by DCIS".  Weird.  Don't know what that means, so I have DCIS in the lobules then?  I thought DCIS would be in the ducts only. 

  • BerkeleyKim
    BerkeleyKim Member Posts: 390
    edited March 2010

    Holtbolt--Glad you're recovering well with your new Bayou Boobs!

    Jess--Glad you love teaching your teens! Some people thiink I'm nuts loving my Ks, with all the runny noses and shoes that need tying, but I do. Good luck on your recon. But what are sleeping bear bounds? (oh--just looked back through older posts "mounds!")

    Renrel--I'm up for some long-distance Reiki when you finish that course! And I'm taking 1000 mg of Tumeric (although my platelets decreased last week--which I think could be from that and the aspirin I'm taking) and green tea. My cancer support group leader shared an article about concentrated bitter root being very effective (I believe it's being researched by maybe md anderson) and also homeo pathic remedies that md anderson is researching.

    Jilly--don't know what that means about the "cancerization." New word to me too. I'm sure your surgeon will set your mind at ease.

    KT-9 pounds!! wow I'm jealous. That eating like a bunny is so hard.

    Plutz--good to hear things are going well. My husband is scheduled for a colonoscopy, and my onc keeps reminding me to do it, plus see by ob gyn. (I haven't been in since my nurse prac found the lump).

    I saw my onc last week and he basically just feels my good boob and around my mast site and armpits. My blood pressure was so high--anxiety I guess. But they called today and said my Vit D is better (up from 21 to 36--I'm taking 3000 mg/day) and my tumor marker was normal (CA15-3) at 7. But I forgot to ask why I have a number at all. Now I can bury my head for another 3 months! 

    Oh--and he said to take a baby aspirin a day.

  • Renrel
    Renrel Member Posts: 497
    edited March 2010

    Sorry I can't answer your question Jilly.  (Love the pic by the way)

    This evening I attended a showing of art work at my hospital.  Artist donate pieces to be displayed around the hospital and there were a few pieces by us patients done as part of the expressive arts workshops.  I had one art piece and one poem displayed.  It was a pleasant evening but for some reason I found by the end of the evening I was feeling very emotional.  I think maybe mingling with people and being identified as one of the patients struck a nerve after being back to real life for so long.  Just being asked what kind of cancer to you have, rather than did you have rung in my head strangely even though nothing was meant by it and the person was just making conversation.  

    I am going to be now.  I am very tired. 

  • ktym
    ktym Member Posts: 2,637
    edited March 2010

    Renrel, hugs

    BerkleyKim, interesting your doc told you to do the asprin a day.  I've thought about it, just feel like I'm popping so many pills already.  So many supplements recommended for the neuropathy.  Calcium etc now that have to worry about the bones on the hormonal therapy.  Its a wonder I have room for food, but, sure don't seem to have a problem fititng that in.  I find I do better most days but have had a couple of melt downs.  DH says it catches him by surprise, I'll be doing fine and BAM.  Both times it has been dropping stuff I know I normally wouldn't have dropped.  I hate this residual neuropathy.  My feet hurt all the time.  It takes three times as long to type, and the typing is full of mistakes, and I have to type a lot for work.  Every once in awhile I'll drop something and the frustration just boils over.  For the most part I'm doing better, however.  

  • jrgolomb
    jrgolomb Member Posts: 1,236
    edited March 2010

    oh my goodness, sleeping bear bounds!   that is funny.  Couldn't have pulled that off if I tried. 

    Get my markings for my new boobies Tuesday!!  Then up bright and early on Wednesday. 

  • ktym
    ktym Member Posts: 2,637
    edited March 2010

    Jess, I'm so excited for you.  congratulations and keep us informed about how things go

  • momand2kids
    momand2kids Member Posts: 1,508
    edited March 2010
    So,I have my 6 month visit tomorrow--- I am going armed with some questions-wanted to test them out here to see if I am missing anything--1. Zometa--what are the benefits for me (lobular, grade2/stage 2) no nodes and what are the risks and will insurance cover it for my dx? What tests (liver, etc) would I need before starting it?2.  Femara- better since I started taking it at night--- is 5 years still the recommended course of action ?3.  Definitely don't feel as sharp as I did pre-chemo--- noticed that some people are using wellburtin?  should I consider that?  what are the side effects? 4.  MRI- when can I have my follow up MRI (was told I would have to wait for at least a year after radiation which ended in May 09 5.  Participating in the LISA study (exercise and nutrition study) doing well-- are there other studies like this that I might participate in once this one ends?6.  Ovaries- I still have them- do we think that we need to get them out?  7.  Gene test-I have not had it and not sure whether I should or not (no history in family)8.  Soy? can I have it or should I be avoiding it?9.  My original dx said er+pr+- the oncotype sheet says er+,pr-  who is right?10. Right side (lumpectomy side) still feels tight and breast is still tender from radiation- common?taking any and all suggestions for additional questions!
  • ktym
    ktym Member Posts: 2,637
    edited March 2010

    momand2kids, those all sound good to me,  kudos to you for being on the LISA study.  Any SE's you need to ask about besides the right side tenderness and tightness? 

  • Frankie_
    Frankie_ Member Posts: 422
    edited March 2010

    Hi ladies,

    My name is Frankie. I had 4 AC & 4 Taxol. I just finished my last taxol on March 9/10. I had relatively no SE's from AC. However, Taxol was very rough for me. The neuropathy is really BAD. My onc had to decreased my dosage starting the second infusion. It feels like each of my toes and fingers are wrapped so tight with tape that the circulation is being cut off. I have numb, pins and needles feeling. My shoes don't fit comfortably anymore and anything I touch (hands/feet) feels like sandpaper. I was wondering since this group started chemo (Jan/09) 11 months before me, I was wondering if any of you had this experience, and if so, does the neuropathy go away completely? if so, how long???

    Frankie

  • ktym
    ktym Member Posts: 2,637
    edited March 2010

    Sorry Taxol was so tough, but congratulations on finishing.  Frankie, my neuropathy never went away.  However, for the majority of us, not all of us, but the majority of us it does get better.  Things I've been told may help and won't hurt: Co-enzyme Q-10, Vitamin C and B, L-carnitine (the most important one).  Are you having pain, or "just" numbness?  For the pain I tried neurontin/gabepentin, which did nothing for the neuropathy but did help my hotflashes a lot.  Acupuncture helps a little.  I've had a couple of docs tell me to try lyrica which I haven't tried but am thinking of asking about.  As you get out moving around be careful of your balance, it can be effected also.  Be careful walking because you may not feel blisters developing, so watch walking in new shoes or sandals as the weather improves.

     Hope it helps, and hope you are in the majority and by next year this is all a distant memory and the neuropathy is gone.  So happy for you that you are done. 

  • Renrel
    Renrel Member Posts: 497
    edited March 2010

    Hey all, Today was supposed to be a fun day off from work.  I was going to spend time at DS school and host a playdate.  But, DS started vomiting around 9:30 last night and continued to do so on an off every half hour or so until 6am or so this morning.  So I have been home with him all day. It was a gorgous day outside but I never got past the front porch.  He is feeling much better but we are both tired. Hopefully he will keep down the fryed egg and toast with honey I made him for dinner and neither DH nor I will get the bug.

    We also signed the papers to refinance our mortgage just before DH left on an overnight business trip.  The agent looked at my licence photo and asked if I had gotten a perm.  I gave DH a look and just said sort of. 

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