TRIPLE POSITIVE GROUP
Comments
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Agreed, Ashla. The segment of "Cancer: Emperor of All Maladies" which traced Dr. Slamon's development of Herceptin was one of my favorite parts of the documentary series.
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Suladog - congrats on running again! I'm back to exercising too and feel really good.
And to those wondering about T/H side effects - I'm 3 months from Taxol and in the midst of Herceptin only and have essentially no side effects now. I had mild neuropathy in fingers and feet. The fingers are all better now, the toes, balls of feet tingle funny when I first get up or if my feet get too cold or hot, but no pain and certainly nothing that would have changed my mind about Taxol had I known in advance. I have some lingering nausea but I'm 99% sure now it is from Effexor I take for hot flashes, not related to the chemo or Herceptin. I never had bone pain with Taxol though some do. Nausea was mild and easily controllable with meds. My worst BC "SE" was/is my own anxiety - far more uncomfortable than any chemo SE. I'm learning to let that fade away. Exercise helps and I'm trying to reinvigorate my meditation practice. I've never before been an anxious person - this Dx really punched a hole in my delusional invulnerability thinking. I'm having to integrate that newfound lack of trust that all will be well into my life. I'll bet I'm far from alone!
I'm also osteopoenic and my MO suggested Zometa, an IV bisphosphonate given every 6 months. I'll see her next week and ask about Prolia - seems easier to do the shot than go back to the chemo room for infusions. Also seems to have a slightly lower risk of SE from what I am reading, though nothing is zero chance. Did anyone discuss those two options with their MO?
I've been on Arimidex for a little over a month - can't say I feel any different so far. My weight is down slightly - a pound or two - but I attribute that to increased exercise. I eat fine now.
Wishing everyone good health and freedom from distress of any kind!
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TTfan it also depends if you can get your insurance to approve it. I had to fight for it. Pills gave me heart burn. I have LE in left arm and the other is at risk so I didn't want to do the infusion. I still go to the infusion room. They have to check my blood and calcium first. Then I get the shot.
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Thanks lago. I have Kaiser so we'll see! I think they discussed some positivenew research on Prolia at the current ASCO meeting, so maybe my MO will come back more enthused about it.
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Ashla, have you watched the PBS special "Cancer, the Emperor of all Maladies"? There are three segments and they feature Dr. Slamon in one. It is a fascinating collection of programs!
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I read the book, twice! once before DX, and once again after! Excellent book, and I am sure I have forgotten so much of it, I will have to read it again! But I am going to check if my library has a copy to watch. Pbrain! Nice to see you, I always wonder how you are doing!
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PBrain! You are back! I have been worried about you.
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Well she's not nameless and faceless to us but we have our very own hero medical researcher...Pbrain! Hi Pbrain!
Not in the forum regularly so I thought I had just missed your posts but from the reaction seems you've been MIA.
Hope all is well and yes, I saw the segment with Dr Slamon on PBS. I cried. We are so fortunate.
You researchers are at the very top of my very short list of people to consider as heroes...
Be well...everyone.
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Ah shucks, thanks. I miss you guys. I think I just needed a big, long break from thinking about breast cancer. It was hard for me to really recover emotionally after the fight was over. Doing much better now and glad to drop in and yack at you!
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PBrain. Glad you feel better emotionally. I so understand. Somedays just the sight of something pink can throw me for a loop. Had a long talk with a friend yesterday about anger and the reality of the "dread" disease diagnosis. i finally have taken a couple action steps to take better care of myself emotionally. I resigned as Dean of Health and requested a transfer to Nursing Program Director. I takes me from 12-month FT administration to 10-month FT director. Will find a way to deal with the financial hit (teaching a couple classes adjunct) but my stress was greatly releived on day 1. I finish the transition in 20-days. Not that I am counting. Then I agreed to write an education plan for an acute care psychiatric facility and provide mentoring to nurses. And I LOVE it. Part-time--whenever I want to be there.
I am reading books. Ok. Novels. Ok. Maybe not high reading levels or needing much thought. But am enjoying reading again. I cut out a new quilt. First time in a year. And I went for a walk. Very short as still SOB from the heart failure crap. But it was a walk. And I still see a therapist. Down from weekly to monthly. And may always.
Take care of you. Your profession is demanding and you are doing so much good for the future of medicine. But you are most important.
Much love
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Thanks Susan! I'm glad to hear you have taken some heat off of yourself. Being a dean is not pretty, or so I hear from others who have done it. My Uncle just stepped down at U of AZ Medical School and he's really enjoying clinical rotations and research again. I think when you are so good at what you do, you end up going to the top even if you don't want to!
I think for me...I don't know...I kind of struggled with how the diagnosis changed me and really even if it did at all. I still make a beeline for junk food before I'll look at chia or a kiwi. I have lost the post chemo weight, but am not thinner in any real sense. I still stay up too late, think I have forever ahead of me, still live like a youth. Burning candles and not seeing my limitations.
But I do know I've changed. I definitely make more time for family and adventures. I do feel a need to move some of the work issues to a back burner; I can't do it all. I am so very grateful in so many new ways. I have my garden going like mad this year after two years of just scraping by and putting Miracle Grow on more weeds than plants. I feel like my old self except for a bit of loss of sensation in the balls of my feet. I'm way more compassionate towards others in poor health, where before I would have been like "get up and get moving! No laying around like a slug!" (I would have made a terrible nurse). I want to help others more and I want to be involved in things, see new places, get out and live. Yet I'm still lazy and a commitment-phobe, I don't know. I feel like I was shaken up in a paint mixer in some ways.
And yet, late at night when I can't sleep, I think about things...like the enormous amount of trust I gave to my caregivers without so much as a question of "what are you doing?" Like how I don't know if I would have cared much if I died when I was hospitalized after my first chemo...it was weird how little I cared about life at that point. Like why did I get this and what did I do to cause it. Like why my sweet dog has to get so old and how much I miss my father who passed away with cancer in 2011.
Yeap, definitely a psychological journey on a paint shaker ;-)
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pbrain - missed you and love the pain shaker analogy - so true.
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Pbrain- well said . I can so relate to a lot of what you said.
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Jane:
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pbrain,
Beautifully put
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Hear, hear Pbrain......
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Thanks guys! I'm still up...at 2 a.m. EDT. Arghhh! I honestly think it is arimidex. This insomnia is the pits!
So I read something recently and I want to see what others think. Currently in the US, the option, for even small tumors (like mine), is definitely a bilateral mastectomy. Even without a real increase in disease free survival, women are opting to have both breasts removed. The article I was reading said that this was a result of awareness, which has been what we are all supposed to be sending our money in for. One researcher said (and I loosely quote) "the more awareness there is, the more women realize their breasts can kill them." So they opt to just have them taken off.
So do you guys think awareness isn't exactly what we need anymore? I'm thinking put the bucks into better imaging (since I was the dude that had a normal mammo right before my sonogram that showed a tumor)...I find it interesting that we gals can all look at our breasts and think they can kill us. But yet, I still do that every day.
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pbrain - I think the focus needs to shift from awareness - anyone who is not aware of breast cancer has been living under a rock - and into research, bringing newer treatment options to more providers, foundations that help with patient financial issues, and certainly better diagnostic tools. I am another that had a clean mammogram, and five minutes later a bad US. I had a BMX because I correctly suspected there was unseen stuff in the other breast that would be trouble, and because I didn't trust imaging going forward - mammography failed to see a palpable 2cm mass and MRI failed to see a .5cm positive node.
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Pbrain, you are so right that this experience has taught us to fear our bodies. When I saw the cover photo of Kaitlyn Jenner, the FIRST thought to pop into my head was "OMG, now she has breasts and female hormones, she'll have to worry about getting BC." Sad we now have these dark thoughts looming over our heads all the time. You are right. Enough money has gone into awareness! We are all very aware. Better imaging that could catch even the sneakiest of cancers and is safe and economical enough for women to begin screening at a younger age would be incredible.
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I absolutely agree that the focus really needs to shift. How can we not be aware with all the pink splashed everywhere. I wish all that money that is raised would go to more research and better diagnostic tools like SpecialK said. Maybe then we could get actually get closer to a cure, a vaccine or at least treatments that aren't so damaging to the body.
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Love and relate very much to your recent post PBrain!
Special K, I share your feelings concerning awareness 100%! I am yet another who mammography failed due to density. Like you I also had a false "Clean" mammo mere minutes before ultrasound showed invasive breast cancer! I have also become very aware and saddened to see so many young women under 40 in my support group diagnosed at late stage due to insufficient screening. It's heartbreaking
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I'm just wondering why the ultrasounds were performed when the mammos didn't show anything. Until last year, my mammos always came back with a good report and I was never offered an ultrasound. Did you ladies request ultrasounds?
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Blownaway, my ultrasound was performed along with my mammogram because I could feel a palpable lump that could not be imaged with mammo. The tumor was only viewed with ultrasound and then finally MRI.
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I palpated a lump one month after my mammogram. I tried to tell myself it was just a cyst because I had just been reassured my a clear mammogram. After one month the "cyst" did not go away so I asked for an ultrasound which showed the tumor. The location of my tumor may have been why it was not seen on mammogram. It was close to my chest wall, high and toward the center of my chest so it would have been outside the perimeter of the mammogram. Even when they did the core biopsy and placed the marker and went back to the mammogram, it could not be found because that part of my breast did not get pulled into the area of imaging. Yet the area was so clearly seen with an ultrasound. I don't know why they don't do more ultrasounds. When I asked, the answer I got was that it would be like looking for a needle in a haystack- unless they know the area to look closely at, it would not easily be found- yet as soon as they placed the ultrasound over the area of my tumor it was so obviously seen- even by my untrained eye. I could clearly see the black spot and knew immediately it was not a cyst.
I completely agree that this "awareness" campaign needs to shift towards better imaging- though I wonder if "awareness" was what sent me back to my doctor, just one month after my mammogram, asking for an ultrasound.
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Kudos to all those taking active roles in their healthcare.On another note, I'm the one who had to quit Herceptin because my LVEF went from 56 to 35 in a short period of time. I was breathless and had no energy at that time but as my LVEF improved (into the 40's) so did my symptoms improve. I've been working out, riding bikes with no problem. During the last week, I am noticing a return of breathlessness and some nausea. Can your LVEF take a downward swing after having improved halfway back to normal? I am not due for an Echo until 15th July but am going on vacation out of state this Monday. I don't like to be an alarmist or hypochondriac but I just don't feel right and would like to hear from the other ladies with lowered LVEF. How often were you monitored after it was discovered?
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Hi, Blownaway. I was one who had to stop herceptin for a few months as my LVEF had dropped dramatically. I had noticed a shortness of breath when i was walking up a hill that hadn't bothered me a few days before. When i told my onc, he ordered the test that found it. So, ever since then it had been pretty good, no shortness of breath until... I had been on femara for about 8 months, and i told them. They said well you are a smoker, you are getting older... So on valentines day, I stopped femara. It wasn't until cinco de mayo that I noticed.... I COULD BREATHE AGAIN!! And so, now i have been back on tamoxifen for a couple of weeks, and again, I am starting to feel that my oxygen saturation is falling a little. It just feels as if I don't get enough air with each breath that I take. I am not sure when I will have my heart test again,but I am curious to know. I see that you are on hormonals, do you think that might be the cause?
I am attending a class for smoking cessation, and cutting back tremendously.
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Hi all! Any triple positive want to share any and all holistic and natural therapies or supplements you were told to take. I have a great team of Dr's including an integrative specialist but feel that I could be doing more on a holistic level. I do yoga, exercise, eat most plant based and organic. I just started Vitamin D after learning my levels were pretty low. Just want to compare! Thank you!
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Blownaway - My cardiologist is monitoring me once a year even though I had no drop in LVEF during Herceptin (it remained at 65) and my year finished Nov. 2012. He's concerned that the Herceptin effects could show up later, even up to 5 years out. He has many patients who have either had Herceptin or doing it now. He's been my cardiologist even before BC and had me on metoprolol for a heart rhythm problem (SVT) and feels the metoprolol protected me during Herceptin and now.
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My LVEF dropped to 52 on my last Muga. My MO didn't want me to continue treatment until I saw a cardiologist. I wasn't having any symptoms but since she couldn't predict which one would put me over the line, she made me stop. I had an echo a week ago that showed my LVEF had improved but he could still see that my heart was not where he wanted it to be. I'm now on two heart medications and resume Herceptin next Tuesday. He put me on the Meds to help protect my heart for the last five treatments. I will repeat the echo eight weeks after the first. I've been light headed since Monday which I've read can be a symptom of heart failure or the medication I've been on.
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blownaway - I was the same as ella - palpable lump not seen on mammogram buys you an ultrasound - at least in military facilities. I could pinch my mass between my fingers. Also, I went back after I was biopsied and diagnosed to thank the radiologist who set up the off-base consult asap - if we had done watch and wait I might not be here since I was node positive. He reviewed my mammogram again and saw absolutely nothing.
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