TRIPLE POSITIVE GROUP
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Kate.
Yep. Actually had fillings drop out--yes. Drop out.
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Thursday begins another year of Pinktober or *%&#tober. Or your designation of choice.
Today, the eggs I purchased were stamped with pink ribbons. If the company had spent the money on research instead of stamping pink ribbons--oh my. I have said this during my three years of membership-and will again. I do NOT enjoy *$&%tober. In my prior life I was thrilled to purchase food items with a pink ribbon-I was certain so much money was going to research. Now just let me have my eggs and sweet potato and spend the money elsewhere.
This month I will have my first appointment with my new MO as mine moved to Wisconsin. Anyone living in or near Appleton PM me-he is the best ever. As a nurse, I don't like the new guy. But have said I will give it one appointment. I have an appointment for a bone density. Am thinking my bones are hollow by now and I will be classified as a bird---if you see an odd looking flying object in your yard--might be me. Have an appointment to meet with yet another GI guy. And more labs in hopes there is just a tad of iron in my blood. I used to say I wanted a salt lick (still do) but maybe should add an iron lick of some sort. And eat a placenta.
But, I did use a hair dryer today for the FIRST time since my hair fell out--the first of three times. Not saying I enjoyed it. Will probably have chemo curls again tomorrow. Am clueless as to why I still have chemo curls. Never had a curl in my life before the great adventure.
Blood moon tonight. For the nurses and other medical persons among us. Yikes.
Much love.
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In defense of Pinktober. Before Susan Komen Charity no one ever talked about the disease. People were embarrassed. Finding information was hard for those diagnosed.
Now I agree some of the "Save the boobies" is offensive since we know it's about saving lives but we can't put this back in the closet. Women are dying from mets and/or treatment. You would be surprised how many people believe if you have been diagnosed with early stage and treated that you are free and clear after 5 years!
My recommendation is choose your charity wisely.0 -
Well said Lago
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yes, that's the catch with the pink... My MO told me 25 yrs ago that I needed to think of bc as a chronic disease... Hopefully you stay clear and never have any more problems but the get out of jail free card just doesn't seem to be there for this on
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I guess I'm in the minority, but I not only don't have a problem with Pinktober but I actually appreciate the efforts that go into it. I know not every product/package/t-shirt/whatever is putting every single penny to BC research or awareness and the like, but if it has contributed, even in a very small way, to the life saving treatments and support that I've benefited from over the past 18 months or so I'm all for it.
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agree choose your charity wisely, as some are not what they seem. I was appalled to find out one of the major BC groups contribute heavily to planned parenthood who make it their business to kill babies.
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Jersey girl which group contributes to planned parenthood?
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Planned Parenthood doesn't kill babies. And yes Komen does give them some funds.
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Jersergirl Planned Parenthood does not "make it their business to kill babies."
They are funded by organizations like Komen to provide breast examinations to nearly half a million mostly poor women many of whom would go untreated each year.
Educate yourself. This from the New England Journal of Medicine....Doctors and scientists...the ones who find cures for the deadly disease which we all share..
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I debated about weighing in, here, but I have to:
Most of what Planned Parenthood does is cancer screening and prevention and birth control. Abortions are a very, very small part of what they're about and, without PP, more women would die of breast cancer every year.
That is all.
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And without planned parenthood there would be more unwanted pregnancies, many leading to abortion!
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Planned Parenthood does kill babies and sells their body parts and does it with taxpayer money. It is on tape for all to see if they can stand to watch.
Their CEO makes $600,000 a year. They make so much money that their income far exceeds their expenses.
Yes they do some screenings but there are thousands of community health centers that also do screenings and do not do abortions and do not take tax payer money. And they do not do mammograms.
Their founder was Margaret Sanger, a racist whose mission was to eliminate black babies. Most clinics are in black neighborhoods.
It is in the history books ladies. Did anyone watch the hearings on CSpan yesterday? People need to be educated as to what this organization is all about.
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Wabals
All proven lies....PP has done NOTHING illegal.
You obviously didn't read the editorial by the New England Journal of Medicine. Education takes work.
"It is shameful that a radical antichoice group whose goal is the destruction of Planned Parenthood continues to twist the facts to achieve its ends. We thank the women who made the choice to help improve the human condition through their tissue donation; we applaud the people who make this work possible and those who use these materials to advance human health. We are outraged by those who debase these women, this work, and Planned Parenthood by distorting the facts for political ends." NEJM
And yes I watched the hearings. It was a perfect representation of the disrespect that those who attack PP have toward women.
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I always find it funny when people balk at the salary of a non-profit CEO. What do you think they should be making - they are a freaking CEO! That requires education and a great deal of experience which SHOULD be paid well.
The CEO of National 4-H makes the same amount of money as you quoted for PP.
The CEO of the Los Angeles Philharmonic makes more than a million per year.
The CEO of the Alzheimers Association makes $2 million per year.
The CEO of Goodwill makes $3 million per year.
$600k salary for a CEO is NOT a lot of money.
I'm staying out of the rest of the argument - it's all just so silly. One side is never going to convince the other and vice versa - so why not just drop it so we can have a nice thread here again?
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Yes, let's stick to the purpose of the thread -- to discuss triple positive breast cancer. edwsmom has it right; neither side is going to convince the other at this point. We should just agree to disagree.
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edwsmom
I actually believe this much more than silly It goes to the very heart of what brings us here. Women's Healthcare. Cancer. Survival. Scientific research.
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I find it ironic that those who fight for survival for themselves would deny it to the most innocent of us- the unborn. Every one of you had the chance to be born. Why do you deny that right to others?
That is all I will say on the matter. The facts speak for themselves. Late term abortion is illegal. Selling body parts is illegal.
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Ashla, if you think you're going to make a dent in those on the other side, God bless you. I just don't think you can.
Let's take this to another thread please.
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So not to change the subject, but.....
I had my LX with SNB on the 18th, and the good news was that the margins were clean, the tumor was <1cm, and the nodes were negative-Yay! I am waiting for oncology referrals, but the surgeon said that because the tumor was so small I might be able to escape chemo. However, she said that I cannot have Herceptin alone, and that I definitely need to have the conversation with the MO and ask questions. I have gotten the impression that Herceptin is the wonder drug for HER2 positives, so wouldn't I want to do it? Why can't they give it alone?
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amy - Herceptin is thought to work synergistically with chemo, so it is given together, based on drug trial data. Systemic treatment with chemo and Herceptin is usually only given to those with a mass of 5mm or larger, although some with small but multi-focal Her2+ disease also receive it. Giving Herceptin with weekly Taxol only, which is thought to be milder, seems to be the choice for tumors under 1cm. Here is some info:
http://www.breastcancer.org/research-news/20140207...
http://www.nejm.org/doi/full/10.1056/NEJMoa1406281
http://www.ascopost.com/issues/january-15,-2014/her2-positive-breast-cancer-patients-with-small-tumors-benefit-from-low-toxicity-regimen.aspx
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Question - for those of you who had TCHP, how did you find your first cycle to compare to the subsequent cycles? Did you feel the same the week after each? Did you feel worse...better?
I'm gearing up for cycle #2. During the first cycle (done on a Thursday) I was pretty much down for the count from the following Sunday through Wednesday. Then started to feel better. I went back to work on the Friday (I worked from home on the other days).
I guess I'm wondering if I should expect a similar experience going forward or a more manageable one?
Also - was there a cumulative effect as you went through the treatments that made it harder?
Thanks for sharing your experiences...
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edwsmom - I did not have Perjeta, but I found that for me infusion #1 was hard, the big D, nausea/vomiting (took me a beat to determine that Zofran was ineffective for me, lol!), a killer headache (probably from the Zofran that didn't work), and ear ringing. Infusions #2 and #3 were not bad - better control of nausea with different drugs, no headache, but still had Big D, #4 and #5 were a bit tougher - mainly due to reduced hemoglobin and fatigue, but #6 was decent, just fatigued but no Big D. I generally was close to home for the first week following infusion mainly due to the Big D, but after that I was out and about, and I also had Thursday infusions. A number of people on this thread and the TCH thread, followed a similar pattern - first infusion was a bit of an assault and often with a headache that did not happen on subsequent infusions, the ones that followed were better, but cumulatively more fatigue toward the last infusions. Perjeta may cause more GI distress, but I don't know whether that is consistent from the first infusion, or worsens as you go along. If you didn't have it the first time, you might not experience that particular issue.
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edwsmom
Like Special K ,I had TCH. Infusions on Monday and was on a steroid high till Thursday .(Great time to do the closets and heavy cleaning). Then ...until after I found this forum..I faced the BIG C for 3 days .I was generally just Dazed and confused till Sunday and then it was upswing mostly till the next go round.
All in all..the first week was the toughest but all doable. And for me...it did not seem to be cumulative in its difficulty. My last two treatments were actually the best. Probably because I was prepared.
Good luck!
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Hi Special K,
I sure did have the Big D. ugh. yes.
I ended up taking myself to the ER for dehydration because no matter how much I drank I just could not keep up with hydration due to the D.
Beyond that I had about 1-2 days of light bone pain, manageable with tylenol. And mainly fatigue all the way through the first week post chemo. This past weekend and week I've felt pretty much back to normal (still a little D though, but manageable).
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Thanks Ashla!
I sure hope to have the same experience! Chemo #2 is next Thursday. Fingers crossed!
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Special K!
Congratulations on your miletone! Five years...so.wonderful:)
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ashla - thanks!
edwsmom - are you getting Neulasta? If so, you might want to have them hang a bag or two of fluids when you get the injection so you can stay ahead of the dehydration. I would also ask for prescription help with the Big D - you are likely to continue to have it all the way through if you had it this time - Immodium is usually not enough so ask for some Lomotil.
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edwsmom, I agree with what everyone has said here. Granted, I'm only through 3/6 rounds, but I've found the last one to be much more tolerable, overall, than the first. The fatigue is worse, but everything else has improved (including the digestive distress, which for me has been a terrible combination of D and C).
I should add that I'm only on a half-dose of Decadron, due to the SEs it caused me. I do wonder if that made the fatigue more noticeable this time around, but I'll take it over the alternative.
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thank you so much SpecialK! I looks like that might be a good path for me.
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