TRIPLE POSITIVE GROUP

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2017

    I hope this is ok..

    But I got my wig from the American Cancer Society . And I love it! It makes me feel so much better.. I don't look as pale...
    they also gave me a wig stand, pins,two head wraps and a pretty carrying bag.. all for free :)

    I feel a little self conscious ....but I will get over it... :)

    Its the little things Ladies .. its the little things :)

    Hugs
    Denise

  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2017

    CoachVicky or anyone .. this is what my report said for my


    The left ventricular chamber size is normal. The wall thickness is normal. Normal left ventricular systolic function. LVEF 60-70%. Normal wall motion The ejection fraction is calculated to be 65% by Biplane Simpsons. Normal diastolic filling pattern.

    is this the same as MUGA report ?

    Thanks for the help...
    Denise ..

  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2017

    I found this here o BC.org site.. .I thought I saw something about 10 year rate for early stage cancers using Herceptin...
    Now this it wasn't with Taxtol or Taxotere but with another chemo...

    http://www.breastcancer.org/research-news/hercepti...

    At 10 years after treatment, disease-free survival also was better in women who were treated with Herceptin:

    • 73.7% of the women who received chemotherapy plus Herceptin were alive without the cancer growing
    • 62.2% of the women who received chemotherapy alone were alive without the cancer growing

    This means that disease-free survival was 40% better in women who got Herceptin plus chemotherapy compared to women who got only chemotherapy.

  • SpecialK
    SpecialK Member Posts: 16,486
    edited July 2017

    denise - echo and MUGA are two different tests, that essentially measure the same thing - you have a totally normal result. Which test docs choose is chalked up to style points.

    hap - you are in the enviable, and unenviable, position of making a choice. Enviable because you get to, unenviable because you have to. I know that you know that the figures given by your oncologist are a best estimate based on populations - as I said before, it is either 0%, or 100%, and there is no guaranteed predicting, as you are a study of one. Keep in mind that the definition of early stage encompasses a pretty wide range of patients - from stage 1A to stage 3A. The choices patients make at 1A are likely very different from those at 3A. One of the reasons Taxol plus Herceptin was proposed and adopted as a viable regimen for those with smaller, node negative tumors, is for this very reason. A less harsh regimen for a potentially less problematic set of circumstances in regards to Her2+. You and I are in very different places as patients even though we are both "early stage", I did not have to make a choice really, I would have been a fool to refuse treatment, regardless of the side effects. Refusing chemo and Herceptin would have been a death warrant for me, my cancer was already on the move, and undetected. I had an almost 3cm tumor, not seen by mammogram but could be felt. Thank my lucky stars that the policy in military hospitals is to do ultrasound for any palpable mass not seen on mammo, or I would be dead now. I had a positive sentinel that was not picked up at the time of BMX, was discovered later in the lab. I had to wait for my surgeon for 5 weeks between BMX and ALND because he was out of the country lecturing and already had surgeries lined up right when he returned. Upon ALND I had a much bigger positive node further up in the axilla that had never been palpated and was missed on pre-surgical MRI, so by this time it had been 3 months since cancer was discovered. Due to surgical complications which spawned several additional surgeries prior to start of chemo, the delay to begin chemo was 14 weeks, almost 6 months from the discovery of the mass - well outside the optimal window for commencement of systemic treatment. Just as an aside - I have a very supportive husband, but all decisions for surgery and treatment were mine alone, we didn't discuss options or choices. While it is great that he is here, he is not particularly involved and doesn't know a great deal about my situation as a patient regarding systemic treatment - either chemo or anti-hormonal, other than my surgical travails. He came in with me to the first couple of oncology appointments, but then stayed out in the waiting room after that because he felt that my oncologist was taking too much time explaining things to him, and that was time taken away from other patients. I thought that was actually a very considerate thing to do. He came to the surgical consult with the oncological breast surgeon, but has been to no other appointments there or with either plastic surgeon. He knew I had a firm handle on what was happening, he brought me to the 6 infusions, but has not been back to the center since, and this is just fine with me. I spent 28 years as a military spouse and am used to doing things on my own, I didn't need him there, and he is super busy at work. This may seem odd to others, but I have walked through stage IV cancer with both my dad and only sibling, and helped care for my mom, who had a degenerative neuromuscular disorder for 25 years. I had concerns for myself going forward, but didn't particularly take comfort from having someone with me at appointments. Weird, I know, lol!

    Herceptin has been in use long enough for early stage patients that data has been collected - here is some info. Herceptin was added to chemo for early stagers in late 2006, so 11 years ago. This study looked at Herceptin use with an anthracycline based chemo regimen - which has potential for additional cardiac issues, the use of taxane based regimens did not happen until a bit later, but it is known that non- anthracycline regimens reduce the potential for cardiac problems as a side effect of treatment:

    http://www.medicalnewstoday.com/articles/287021.php

    http://www.medicalnewstoday.com/articles/73250.php?sr=&utm_source=TrendMD&utm_medium=cpc&utm_campaign=Medical_News_Today_TrendMD_0

  • deni1661
    deni1661 Member Posts: 463
    edited July 2017

    specialk- I just want to say thanks for all the helpful information you share. I learn so much from each of your posts and always feel inspired.

    You really are special!

  • SpecialK
    SpecialK Member Posts: 16,486
    edited July 2017

    deni - you're most welcome! It brings me happiness if people find value in what I post - it is my silver lining! When I was first on this site others did the same for me - this is my pay it forward.

  • deni1661
    deni1661 Member Posts: 463
    edited July 2017

    specialk- I would like to follow your example and pay it forward too. Friends and family just don't understand what we're going through so it's comforting to have the support from you and everyone in this group 😊
  • wabals
    wabals Member Posts: 242
    edited July 2017

    HapB I agree hate pink

  • BJI
    BJI Member Posts: 154
    edited July 2017

    Taxol/Herceptin #6 done- half way to the finish line! Went fine, port did well. Since my blood work has been good, got to skip blood draw and MO visit. Was great since we were still at the lake. Neighbors invited us over for supper. Have been wearing my wig when I go out, still have lots of hair on sides and back, just thin on top. But I did have it cut very short last week. Anyway got some compliments tonight on my cute haircut, did admit to them it was a wig. They were very surprised and thought it looked great. So I am feeling better about that. Home tomorrow for a few days, then off to see my daughter and grandkids.

  • coachvicky
    coachvicky Member Posts: 1,057
    edited July 2017

    DeniseT,

    I am not an MD so this is only what I have researched for my care.

    Ejection fraction (EF) is the fraction of blood ejected from a ventricle of the heart with each heartbeat. If you ejection fraction is 65% that means 65% of the total amount of blood in the left ventricle is pushed out with each heartbeat.

    Your report reads "The ejection fraction is calculated to be 65%."

    At www.heart.org I found "a normal heart's ejection fraction may be between 50% and 70%."

    This is the same type of information I get on my MUGA Scan.

    Vicky

  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2017

    Thank you!
    So I'm good.. I just wanted to make sure .. kind of get a 2nd or 3rd or 4th pair of eyes to double check... I'm going to ask my MO tomorrow too

    I wonder if exercising would help bring that up .. I know I need too.. my Triglycerides are up...way up , not from the chemo but from me sitting around for 2 years .. .

    Again Thank you !

    Denise

  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2017

    BJI, that is GREAT! Woot! 1/2 way there!

    You give me hope that I can make it through this!
    Tomorrow is round 2 of 6 ..

    hugs from TN
    Denise

  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2017

    Thanks KB870
    I'm your average American woman of 55 .. blah... I took early retirement two years ago from a job that was KILLING me to start over kind deal..well the only thing I started was stuffing my face more and sitting on my butt...
    I'm overweight ... but MO said I'm to try to lose weight during chemo.. but afterwards.. yeppers.. going to a RD in Augs..

    KB870 I will say this .. excising DOES help with sx for sure.. that and drinking lots of fluids.. walking up and down my driveway in the evenings has been a blessing ... the driveway is not long ( 40 or 50 feet maybe) but if I do 12 trips up and down I feel like I've got some workout ..
    On the bad days I could maybe get 4 times.. but it helped with bone pain.. and my temp going up in the evening .. and my state of mind..
    which is always important ..

    Blessings from TN
    Denise


  • coachvicky
    coachvicky Member Posts: 1,057
    edited July 2017

    I raise my MUGA over points from the first time to the last time a couple weeks ago.

    I walk six days a week for at least 2 miles or at least 30 minutes.

    Coach Vicky

  • bareclaws
    bareclaws Member Posts: 345
    edited July 2017

    I am taking another week off from Taxol. Not bouncing back at all. Tomorrow was supposed to be #11, but I will just have the Herceptin alone and then we'll see if I can eek out the last two Taxols going forward. I want to do it but the SEs are cumulative and not fading from week to week. Add in the pulmonary problems I'm experiencing from Herceptin-constant drainage, cough, and feeling like I'm breathing through a filter. I finally hit on a combination of OTC drugs that gets me through the night-Mucinex and Xyzal (Claritin keeps me awake.). One for the cough and one for the drainage. Onc nurse says it's oK to keep this up as long as necessary and that my body would eventually figure it out. I just lost my eyelashes again. Boo Hoo! Hair regrowth is still strongly rooted, though and despite some scalp tenderness, it's not shedding. Yet. I'm on a reduced dose of Taxol -110 mg I think, and that's probably kept me going this far. One good thing is that I've figured out how to manage the weight issue. Daily Intermittent Fasting is really working for me. I've lost three pounds in the last three weeks and that's a BFD for me. I can live this way. It's so much easier than other weight management programs I've tried. And beneficial for cancer patients as the research I've seen here shows that there's less chance of recurrence with IF. Basically, I gave up breakfast and only eat during a six hour window, about 11:30-5:30. SInce I'm on the fence about whether I'm going to take AI's, exercising and keeping my weight down are even more important.

  • coachvicky
    coachvicky Member Posts: 1,057
    edited July 2017

    Best wishes, Bareclaws.

    Vicky

  • kae_md99
    kae_md99 Member Posts: 621
    edited July 2017

    so i called my onco yesterday regarding my bone/ joint pains but she is out of town. talked with NP instead. according to her, herceptin shouldnt cause bone pain and it couldn't be from lupron too since last dose was 2 months ago.she said i am experiencing menopausal symptoms. this is bec of low estrogen. she advised me to try glucosamine chondroitin ( any brand) and gave me tramadol as needed when pain is bad. hopefully the joint pain will lessen in time..i am also drinking lots of fluids. lets see how it goes:

  • kae_md99
    kae_md99 Member Posts: 621
    edited July 2017

    HapB,

    i will meet with my onco in 3 weeks . we'll see what she says...

  • wabals
    wabals Member Posts: 242
    edited July 2017
  • Tresjoli2
    Tresjoli2 Member Posts: 868
    edited July 2017

    kae I was on Lupron for the last two years. I just stopped. My gp says it can cause weight gain, mood disorders, etc. my feet kill. I'll let you know if I feel better off the lupron! I decided it was worth seeing how things went without it.

  • deni1661
    deni1661 Member Posts: 463
    edited July 2017

    BJI - woo hoo half way is a great milestone! Happy to hear you are doing well. Hugs

  • deni1661
    deni1661 Member Posts: 463
    edited July 2017

    bareclaws - hang in there, sending prayers and hugs your way

  • deni1661
    deni1661 Member Posts: 463
    edited July 2017

    Deniset - I was exercising 5 days a week prior to my surgeries and it did help with the aches and pains. I had more pain when I didn't exercise. Plus the fatigue was more tolerable.

    I've tried walking since my DIEP surgery and while each day is getting better I'm nowhere near the exercise I was doing previously. I am so tired all the time, my body is just not bouncing back like I expected. My care manager said the meds are starting to accumulate in my body and I'm getting HP while recovering so my body is telling me to rest often.

    My BS told me that exercise and maintaining my current weight (I lost 45 pounds since diagnosis) will go a long way in preventing recurrence. Not sure how accurate that is but I'm going to give it a try 😊
  • SpecialK
    SpecialK Member Posts: 16,486
    edited July 2017

    deni - fat cells produce estrogen, this is why oncologists urge breast cancer patients to maintain a healthy weight and level of fitness. The less body fat, the less estrogen that can fuel a recurrence or progression.

  • kae_md99
    kae_md99 Member Posts: 621
    edited July 2017

    tresjoli,

    will you have your ovaries removed? im scared of getting off it due to fear of recurrence. i will be taking arimidex after surgery.will AI or Tamoxifen eliminate the estrogens produced by ovaries?



  • deni1661
    deni1661 Member Posts: 463
    edited July 2017

    specialk- I did not realize the fat factor.More motivation for me (and all of us!) to eat well and maintain a healthy weight.

  • deni1661
    deni1661 Member Posts: 463
    edited July 2017

    Hapb - it makes me sad that you feel alone and I do understand how difficult it can be to share/explain your feelings to people who have never experienced cancer. This forum is a lifeline that provides a much deeper level of support than we often get from family and friends. I have made many new friends at the cancer center and am amazed at the close connection I feel with people I've known for such a short time. I feel the same about everyone here
  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2017

    deni ... what little I've doe since I started chemo has helped a lot..
    I've got a lot of weight to lose.. .. I see it as something pro active in helping to keep the cancer away....



  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2017

    Read my labs from today.. everything is either in "normal range" or in the "low normal"
    WBC is good.. my RBC are on the lower end of the normal range..that kind worries me ... but my MO did say that if it got too low they would do a transfusion .. I'm cool with that..
    Maybe that's why I've been craving meat.. ::shrugs::: the body knows what it needs..

    Wish me luck tomorrow is round 2 of 6 ... going down the chemo hole!

    Love to all..
    Denise

  • SpecialK
    SpecialK Member Posts: 16,486
    edited July 2017

    denise - eat as much protein between rounds of chemo as you can muster. It is totally expected for your blood counts to drop during chemo, and a blood transfusion is not based on RBC, but rather on hemoglobin level. Most docs will transfuse at 8, but eating protein - clean red meat, antibiotic free poultry, pork, eggs, fortified cereal, quinoa, Greek yogurt, protein shakes - all should help. I had difficulty with GI issues for the first 10 days after each TCH, but at the 10 day point I loaded up on protein, even if I couldn't taste it and a steak felt like cardboard in my mouth. Also, keep in mind, that lab values are based on adult males. Often women fall into the low normal range even without chemo - I definitely did pre-cancer.

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