TRIPLE POSITIVE GROUP

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  • robinlk
    robinlk Posts: 363

    Linda - your wig is fabulous!

    Pbrain - yikes!

    Home from surgery. Went well. My "not a node" is a node that somehow found itself in no-node-land. Not sure how or why it was located where it was. Should know more at follow up appt next week. Time to sleep off the good meds....excited to see my daughter tonight!

  • princessrn
    princessrn Posts: 270

    Linda.. Excellent look!

    Pbrain...OMG too funny!!i got a total visual. 

    Lago you asked my age a while back. 48. 

    I saw MO today. Done with TC. 4 cycles. He was fine. I will continue herceptin. Rads then hormone tx. Muga looked good according to tech. I'm hopeful 

    Thanks for your input and support   

  • eileenohio
    eileenohio Posts: 268

    Linda-  your wig looks so natural- it is beautiful..  You look great..


     

  • specialk
    specialk Posts: 9,299

    debiann - talk to your MO - you need an antifungal.

  • lago
    lago Posts: 11,653

    debiann What special K said. Don't wait on this. You have thrush (yeast infection in mouth/throat). Longer you wait the harder it is to get rid of.

    princessrn I do believe you made the right choice. Like I said there are no guarantees either way but it sounds like you were in store for some serious damage if you continued. You're still getting Herceptin and endocrine therapy. With no nodes and small tumor you have a good chance of being just fine.

  • linda505
    linda505 Posts: 395

    Princess - glad to hear that your MO was good with the 4 treatments.  I may end up where you are on this if I have any more neuropathy this next treatment than the last one.  I will be talking to him about this next week.   I do not want to end up with major life altering neuropathy.  I watched my mom shuffle for years from uncontrolled diabetes and living in a retirement community I see it all the time.  That is why I took such strong measures with my diet to control my diabetes and am so vigilant about monitoring my glucose.   That SE terrifies me.   I am taking all the suggested supplements and am fine now - but the first 4-5 days after treatment were not good - we will see how if goes next week with doing the supplements ahead of the treatment.  

    Am enjoying these SE free days leading up to the the next treatment - and gonna try to have a normal before cancer weekend.    

  • lago
    lago Posts: 11,653

    Linda just to let you know I did get some permanent neuropathy in my left heel.  It's really not bad. Most of the time I don't even notice it. Just a bit numb. Granted others can get it worse but not all of us get it really bad. Most of us it does go away.

  • linda505
    linda505 Posts: 395

    Hi Lago - I have a little permanent neuropathy in my left hand - my baby finger - most likely brought on by my diabetes before I knew I had it - that doesn't bother me - but after the first treatment I had the tingling, numbness and pain in both feet and hands for multiple days and that really bothered me - I had a hard time typing for a day or two, and i do almost all my correspondence with my customers via email and my job entails alot of spreadsheet and data entering.  I would be in bad shape as far as work goes if I can't type and I can't afford to hire someone to do that part of my job - I run the company and we are small and the owners are absent non participating owners - just collect a check now and then - but keeping us profitable is my job.

  • debiann
    debiann Posts: 447

    good call on the thrush ladies, thanks for your help. They told me this is an se of the steroids. So far I think the steroids have caused more problems than the chemo.

  • soriya123
    soriya123 Posts: 383

    hello ladies,  so much going here n i haven't post for a while.   Pbrain your wig story made me laugh so hard..  ouch ..ouch!!!..thanks for laughs.  I had TE echange today, so far looks good...knock on wood.  my PS able to take some fat out from my inner upper thights n around my belly button.  Pain so far not bad at all.  i only took one norco pill since 4pm till now.  i hope i continue to feel like this would be great.  praying no complication or no infection.  :) 

  • camillegal
    camillegal Posts: 15,710

    Good Luck Soriya, I hope u'r pain is no pain.

    Pbrain too funny.

    Linda I have to say that doesn't even look like a wig.==Beautiful.

    Hi Ashla u know I'm always reading, I just don't know anything to add, u ladies are all so knowledgeable that I just pop in for compliments to give. 

  • mckatherine
    mckatherine Posts: 180

    Linda - love that wig!  You look great!   :)

    Lago - I mentioned ovarian suppression + an AI to my MO during my ovarian cyst craziness back during the holidays, and she said even if I had my ovaries removed, she'd still keep me on tamoxifen for the first five years then switch to an AI.   The potential for bone loss was her reason.  Guess she's deeply entrenched in the premenopausal= tamoxifen belief.   

    Anyone get a cut or other boo boo on their Lymphedema-danger side?    Got stuck on my knuckle by a raspberry when I was gardening today (the one spot on my glove where the neoprene isn't).  I forgot about it after it happened (no bleeding or anything), but it started getting sore tonight and now it's red.  :(  I put neosporin on it.   Is there anything else I can do?  

    Hi Cami!   :)

  • linda505
    linda505 Posts: 395

    Hey McKatherine - I had a hang nail last week and mine started to get red too - I cleaned it with hydrogen peroxide and did neosporin and bandaides - did it about four times a day for two days and it is better.  I couldn't believe how quickly it got red.

    Thanks all on the wig compliments - I have another that my insurance paid for but I must say I like that one the best and it is cooler too.  Being in florida and going through this during the summer - I will be wearing mostly scarves for  the heat -but it is nice to have something to wear for going out at times. 

  • lago
    lago Posts: 11,653

    McKatherine my onc is more worried about the SE from Tamoxifen and also the AIs seem to work a little better. I was already osteopenic before chemo with family history and other risk factors for osteoporosis. After chemo it got worse. Diagnosed with osteoporosis last fall. So my guess is her focus is to keep the cancer away because the other SE are more treatable. Both our oncs have a good points.

    I've cut my LE many times but never had an issue even when I noticed it the next day. 

  • bren58
    bren58 Posts: 688

    Linda- great wig! I am sure people that don't know you would never guess it was not your real hair.

    princess- glad you are finished with the TC part of chemo.

    soriya - I hope you continue to heal well.

    McK, yes. I have had a small cut and bug bites on my Lymphedema risk arm. I try to clean it and put antibiotic on it ASAP and so far no problems.

    Right now my LE risk arm muscles are very sore from transferring on and off the knee scooter I have to use for the next 2 weeks because of foot surgery. It is my dominant arm (right side) and I think I must have overused it the first day without realizing it. So now I am wearing the sleeve everyday and being more careful about using my left arm to support myself when transferring to and from the scooter to the bed/chair/potty. I am hoping I don't wind up with full blown LE because of this :(

  • McKatherine, my doctor is of the same mind as yours re: ovarian suppression and tamoxifen. For PREmenopausal women, the side effects from being shoved into menopause (bone loss, heart issues, cognitive issues) can actually be very very dangerous, especially when you take into account the YEARS we would have to acquire these side effects. Tamoxifen is supposed to have protective effects on the bones, heart, and mind as I'm sure you know, so I think that's definitely why docs try to keep young women on it, at least for a while before switching! Also, like lago, I have cut my LE risk arm or hand several times with little issue, so sometimes it's not an emergency situation, let's hope it stays that way!

    Now, of to get ready for the day as its my BIRTHDAY and almost my one year from diagnosis!!!

    Happy Sunday ladies!

  • specialk
    specialk Posts: 9,299

    twin mama - happy birthday!!!

  • susanhg123
    susanhg123 Posts: 257

    Good morning ladies,

    I have been lurking and reading as I helped my youngest pack to move to Boulder. Additionally, she wanted to help me clean out cupboards, dressers, closets, in anticipation of a (hopeful) move from this house. Lots of trips to GoodWill. Bless her-she has worked hard and been a great help. I did not realize (or have been in denial) until Thursday-this is her final move.  

    image

    She goes to law school then gets a real job. Or as she pointed out to family friends-actually becomes a grown up. She will never live with me again. Since she is the 4th-and final-I have done this 3 times. I should be dancing on the roof. But, my gosh this is becomming harder and harder. Empty nest for most occurs several years prior. I will miss my late-in-life best-thing-I-ever-did baby so very much. Am so proud of her. A true bittersweet moment if there ever was. 

    i clearly cannot upload pictures. Sarah and her "twins. Part of "The Herd" best friends since 6th grade-some since 3rd. Male on her right-finishing his first year of medical school @ UCLA. Goal Surgery-probably plastics. He is the only one who will make substantial amounts of money. Male on left. Tested out of a master's degree. Finishing his first year of a forensic chem PhD in Florida. Can't remember which University. Goal-FBI as in Bones TV show. He worked as a research assistant @ a state university with a real hot shot PhD who works on and has created some of the drugs protocols for prostate and now breast cancers. Cowboys for Cancer group. Expect that guy to win a Nobel. Sarah. Applied to law school of choice. Accepted. Scholarships. Goal-work with food industry for humane treatment of animals for human consumption. And take her dog to work. Herd Member # 4. Male. Finishing undergrad. Will live with Sarah this summer then stay in Boulder as he decides between law and masters in museum type. Way too smart. Full ride to state univ with money thrown at him to live. Herd member # 5. Female. Starting grad school in fall for education @ Michigan State. She and Sarah both took a gap year as graduated suma while having high levels of out of school activities (Sarah had a little sistier for 3 years, mom with cancer, sorority, internships for her major, volunteered @ the zoo to do enrichment with a 700 # gorilla every Friday morning all senior year, etc). 5th member is doing grad in education for English and theatre to teach in underserved and expose to arts. The 5 essentially lived together in middle school and HS. None went to the same university-but traveled back and forth. Any w/end home camped @ my house. #5s mom moved to Houston so I won't see her much-but the others are here when they visit parents. 

    Not sure why I just shared the above. But it was fun. Sarah is much thinner. Runs every day and back to her early college weight. Wish I was! She is healthy and strong. As long as she stays on 2 feet. She is like her mom. We trip on air. 

    Off to pack and load. And maintain my composure and not cry until Sunday @ the airport when I fly back. Because I am so darn proud of #4.

    Thanks for listening and for your shoulders. Still hate Femara. If I posted about Minipress 1mg for the Femara vivid dreams/nightmares on this thread in addition to Femara. And it working after 4 days and no dreams. Well, not so much. Last night was dose 8. Dream back. Usual people-those I love. Synopsis was different. Usually I am on task to save people I love and am successful. This one a friend was killed in front of me. I knew if I did something I would be killed and would not be able to save the rest. I could not hold his hand or "they" would know I knew him. Sacrafice for the greater good. And YES I see a therapist. He wraps it into my nursing and saving people-mainly lots and lots of children, PTSD from nursing and working in high death areas-again children and infants, BC, the @#$#$# husband from hell, Femara. Chemo. All piled at the same time. Said Minipress should work. Going to keep trying of course. 

    Or, I am bat shit crazy. 

  • footballnut
    footballnut Posts: 449

    hi everyone. Just stopping in to say hi. This tues I have my genetic consult at 11. Anyone ever go through this?  I've already told them as much as I can remember about my family. Anyone know what I can expect in this consult?

    At 1 I have bloodwork then at 1:30 I meet with my MO

    Wed at 9 is round 2 of FEC

    For the past few days I've felt chilled and my buzzed hair has been falling out more and more. Other than that and an itchy scalp all has been ok

    Wishing all a great afternoon!!

    Go rangers!!

    :-)

  • lago
    lago Posts: 11,653

    Footballnut They should be telling you what it's all about. Personally I found my genetic counselor a waste of time. I had done a lot of research so she wasn't telling me anything I didn't know. You'll probably get a pamphlet or something too.

  • ashla
    ashla Posts: 1,566

    Some more good news on her2 pos treatment research. This from Cold Spring Harbor Lab home to 8 Nobel Prize winners and one of the birthplaces molecular biology!

    "In a paper appearing online today in Nature Chemical Biology, a multi-institution team led by CSHL Professor Nicholas Tonks reports that it has found a means of inhibiting another protein, called PTP1B, whose expression is also upregulated in HER2-positive breast cancer. PTP1B has been shown to play a critical role in the development of tumors in which HER2 signaling is aberrant.

    When they treated mice modeling HER2-positive breast cancer with a PTP1B inhibitor called MSI-1436 (also called trodusquemine), Tonks and colleagues inhibited signaling by HER2 proteins.

    "The result was an extensive inhibition of tumor growth and prevention of metastasis to the lung in HER2-positive animal models of breast cancer," notes Navasona Krishnan, Ph.D., a postdoctoral investigator in the Tonks lab who performed many of the experiments and is lead author on the paper reporting the results.

    Dr. Tonks discovered PTP1B some 25 years ago. It is an enzyme – one in a "superfamily" of 105 called protein tyrosine phosphatases (PTPs)—that perform the essential biochemical task of removing phosphate groups from amino acids called tyrosines in other proteins. Adding and removing phosphate groups is one of the means by which signals are sent among proteins.

    PTP1B for many years has been a target of interest among drug developers. It is well known to be a negative regulator of insulin – an antagonist of insulin signaling—and of signaling by leptin, the hormone that helps regulate appetite. Drugs that can block or inhibit the action of PTP1B have great potential in controlling diabetes and obesity. Yet properties of the molecule—involving both its charged active binding site and its shape – have stymied potential developers of inhibitory drugs.

    The new paper by Tonks and collaborators importantly reveals an alternative binding site, called an allosteric site, that does not present the biochemical difficulties that the active, or "catalytic," binding site does. This allosteric site is a target of the candidate drug trodusquemine.

    Later this year early-stage human trials will begin for the drug, a collaboration of CSHL and North Shore-Long Island Jewish Hospital. Dr. Tonks and CSHL have interests in a joint venture called DepYmed Inc., in partnership with Ohr Pharmaceutical (NasdaqCM: OHRP). The venture seeks to develop trodusquemine and related analogs.

    http://m.medicalxpress.com/news/2014-05-validates-...

  • soriya123
    soriya123 Posts: 383

    day 3, still sore.  will see PS tomorrow hopefully she will remove the drain.  Thank you ashla for a new article :)

  • soriya123
    soriya123 Posts: 383

    day 3, still sore.  will see PS tomorrow hopefully she will remove the drain.  Thank you ashla for a new article :)

  • LeeA
    LeeA Posts: 1,092

    Hi everyone.  It took me a couple of hours (on and off reading) to get through what I had missed since I last read the thread in March.  Kathec perfectly described how I've been feeling the past few months:  

    "there are days when I would like to just bury my head back in the sand. Not to be unaware of cancer in general, but to be unaware of mine." 

    I think that's what I've tried to do since March or so, not that it hasn't been there as a constant reminder because of a wound-healing issue I had that started up in January and ended up with me having my 12/10/13 reconstruction completely redone on April 29.  I'm hoping this one will take.  Smaller implants this time (good!  I didn't want 595cc implants in the first place).  

    I've been on antibiotics on and off for months and my 3-month oncologist appointment had to be moved up because of his vacation which meant my blood was tested on the seventh day following my surgery.  When I went in the following week he ordered all these extra tests (some of which I had never even heard of) because every single one of my liver enzymes is elevated, which has had me completely freaked out.  This oncologist does a lot of tests that my other oncologist in California didn't seem to do.  Now I have to go in for blood testing every two weeks.  There is no sand - or maybe the saying is "there is no spoon."  Anyway, there's no sand deep enough it seems to hide in for very long at all.  

    SpecialK, I didn't realize you were going through more reconstruction.  You are such a trooper!  

    As I was reading through the posts from March through May I was wondering about Nicky as well.  I hope she is doing okay.  

    Bren58, I'm so very sorry to hear about your mom and sorry to hear about your foot surgery.  

    lago, I'm intrigued by the AI vacation.  It's amazing to me to read how much better people can feel when they take a holiday from the estrogen-sucking drug.  I now know what it means to feel like an 80-year old women when getting out of a chair.  The strange thing is, I feel the best when I'm walking -- or I did, until I went on Levaquin and my right knee swelled up to about the size of a cantaloupe.  Fortunately, the swelling has gone down but I since have found out that Levaquin can cause all kinds of problems.  Who knows what these antibiotics do when combined with the AIs . . . 

  • bren58
    bren58 Posts: 688

    Good to hear from you LeeA. Sorry that you are dealing with recon issues :(

  • lago
    lago Posts: 11,653

    Hi LeeA

  • ashla
    ashla Posts: 1,566

    Hi LeeA 

    Sorry about your troubles. 

    On the subject of AI s and breaks. July will be my 2 year anniversary on anastrozole. I have had all the issues. Hair loss, achiness , stiffness, gyno issues. Gonna have my 2 year dexa to find out just how badly my bones have handled it. MO is pretty certain they have taken a hit. We actually discussed the fact that nearly 30% of women stop taking AI's because of the side effects.

    I think I found a new side effect. I noticed that suddenly my skin seems dryer & looser. Bit flabby looking. I work out and have never been heavy  so it's not like I had a lot of extra skin. I looked up side effects and loose skin was on the list!

    I am getting old but this  happened  rather suddenly. Anyone else notice this?

  • specialk
    specialk Posts: 9,299

    LeeA - good to "see" you but sorry to hear that you are having some issues!  Hope things settle down.

  • lago
    lago Posts: 11,653

    Yes Lee I have noticed the lack of elasticity in my skin as well as dryness. To be honest that is the least of my worries with the SE. It was going to happen eventually anyway.

  • ashla
    ashla Posts: 1,566

    Lago

    Was just surprised. It happened suddenly . Guess these are all the changes of a woman's natural aging compressed in a shortened time frame by lack of estrogen.

    Sigh...