TRIPLE POSITIVE GROUP
Comments
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I remember reading that for stage 0 only. My onc said my chances of being cancer free in 10 years, with treatment was 86%. But my reaction to that (being diagnosed at age 49) was only 5/10 years! Yikes. What are my chances of making it to 60, 65, 70?
Before I understood what that meant I was not all that impressed with those numbers.BTW 2 years ago today was my first chemo tx. My first Pinktober was annoying and a bit difficult. Oddly now I feel like the post gal for ACS-Chicago this week
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Lago...
Does the ACS take used wigs ? I want to donate my wig .0 -
I was told by one person no but I think it really depends on the location. I know that the Looks Good Feel Better program did have a couple of used wigs… and that is an ACS program. At the very least I bet they could direct you to who does.
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Ashla- I know the local ACS here in St Augustine, FL takes used wigs. They have a BC room of hats, caps, supplies and used wigs. It's also part of the look good, feel better program.
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Cami- love the smiling pup!
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Hello all - been to D.C. for the vaccine trial, so have been out of touch. It took me a while to read all the pages - you have been busy!
melster - yay for nips and "deporting" - happy!
geewhiz - here is a link about magnesium:
http://www.livestrong.com/article/491315-magnesium-levels-chemotherapy/
jenn - yay for the surgery being over - hope you are feeling stronger each day!
lago - awesome speech!
mstori - I PMed you on the Neulasta/Claritin thing, but wanted to post here as well for any who have questions. Neulasta is given to boost white blood cell production in the bone marrow. White cells protect you from opportunistic infection, so when they are too low you can become ill - not good while on chemo. Some docs give Neulasta preventively, some wait until they see if your WBC are dropping before giving it because it does come with its own set of SEs that can mimic some from Taxotere - flu-like feeling and bone pain. Calritin is thought to relieve the bone pain because its antihistamine calms the edema in the marrow that comes from the excessive WBC production. Here is a link to a clinical trial that is testing this theory:
http://clinicaltrials.gov/ct2/show/NCT01311336
fluff - I have found that I can simply copy and paste photos from uploaded ones to my shutterfly account.
awnoo - thanks and hi!
camillegal - on the Activia yogurt - the fine print says you have to eat it three times a day for the probiotic to be effective - that is a lot of Activia! For strawberry flavor 360 calories and about 60 grams of sugar - too much for me!
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Thx Lago and Tori....I would love for someone to make use of it. it's really nice and because I went thru the worst of my treatments in the winter...I didn't wear it that much.
I will wait till I get my last Herceptin on the 15 th and get deported....if ever.
On my 5 th day of waiting for a note from my MO so I can schedule deportation. I stopped by in person yesterday....supposedly getting the note today.
Might be on my way to my third MO soon. This is totally unacceptable. I'm clawing my way to the finish line here . No one and espeially cancer patients should have to do this.
Today my husband will call.0 -
Thanks SpecialK that amount of calories 3x a day is rediculous.
And Ashla I was super luck with my Drs.--their paperwork is always lagging--But My dtr would fillout the form while she talked to the nurse and fax it and ot it back riht away--So everything that I needed was always accomplished in one day If it was a reg. form the nurse would fax it and if it could just be written my dtr would do it and adter a while my dgtr got so used to makin sure everything was right it got to where it was supposed to o in one day. So I lucked out,
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Ashla I was lucky with my doctors but I knew I had the best because my brother-in-law is an MD at the hospital. Granted I do think there are many good doctors there. Nurses were awesome too. Even the former Nurse Ratched and I are great friends now. We got off to a rough start.
But as I said the support staff was lacking and made serious mistakes. BTW why do you need a note? I don't. But if your onc and the staff are not meeting your needs the move on.
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Lago and Camille.....
You are lucky...when these things happen ...even if your md is unknowing.....you realize how tenuous this relationship is. We have to be our own advocates for sure but there may come a time when we're not able and need to know our medical teams...and it is a team...are our best advocates.
Re the note...I guess they may have been burned in the past .Maybe the patient had the port removed without oncologist's permission.0 -
That's bullshit. It's your body. If you want it out you should be able to get it removed… granted my onc prefers we keep it in for a total of 2 years (that would have been yesterday) but she doesn't say you must if treatment is done.
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Lago...
Funny, I never looked at it that way. You're absolutely right. In this process I forgot . Told you I'm crawling to the finish line. I am just very weary.0 -
I bet if you told them "if you guys won't take it out I'll find another treatment center to take it out." I actually pulled that with my genetic testing. My BS wanted that done before surgery to see if we needed to take both boobs. The genetic counselor wasn't calling me back. So I called 2 other places. One could get me in 5 days. Called my BS office that I was having trouble because the GC wasn't calling back but could get an appointment in 5 days at U of C. Nurse called the GC. I got an appointment in 2 days.
I know there is someone out there that will gladly give me service take my money.
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Lago and Ashla-it sometimes takes exactly that. When I was doing dialysis this past year in long term acute care center, I couldn't believe the care provided to the patients. The lack of ethics, concern, care,and just basically having a heart! My patients treatments were 3-4 hours in length and I was with the patient the whole time. The patients family members that were the sqeekiest wheel, those patients had the best care. And also, while i was there, i was their advocate. Thats a nurses ethical responsibility. As a nurse, and now a breast cancer patient, I give them 3 shots. I figure, everyone has a bad day or 2. But if by the third time your still being an a**, or not doing your job, then I am going to call you on it big time. If you don't respond appropriately, then I will take it up the chain. And last, I have told them, look! it's enough that I'm dealing with breast cancer, but that I have to deal with you and your incompetence too!? Wow! I feel great now! I had to do that this past week. Sorry your going through this Ashla. Husbands, families, and friends are great too, when we are tired and weak. They can step in and get it done for us.
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Saltantio the American Cancer Society provides free wigs for all cancer patients going through chemo regardless of income. Here's the number to call. It's 24 hour number: 1-800-227-2345
This is one of the reasons why I'm doing the Strides walk. So the ACS can do this and a bunch of other free support as well as reseach dollars.
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Sol....
Sorry but the wig has been promised to one of our forum girls. I wish I had thought to offer it sooner but as you can see my thought processes are muddled.
My husband called the mos's office at 1 pm....they were supposed to call me in the morning and the office manager who said she would take care of it and call me wasn't in! The other genius to whom I spoke to 4 times during the week told him she would do it in10 minutes.
The good news is that I got a call from my BS's office 10 minutes later to schedule the surgery.
It's experience and the wisdom gained from experience. Most of the staff in my bs's office have been working there for over 20 years and those that haven't are not in thir 20's .
But the mo...who I believe is a very good doctor....is also at fault.0 -
My BS called a few times. Always around 6:30/7PM! My onc called once on a Sunday evening. I knew she just got back from the San Antonio conference. She called to tell me that there was a change in course based on information she got at the conference. Typically she has her NP take care of communication unless it's something really serious. She is in such high demand that she actually now has 2 NP!
And she's married and raised 2 boys now in college.
But my PCP also always calls with results. Like I said I'm lucky but worried about my PCP and possibly my BS retiring. My onc will probably leave feet first.
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I read that it's hard to eat enough tumeric in food to be very effective.
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TonLee, I was looking at your diagnosis and it says 4/4 nodes. Mine was 6/17 nodes. They only took out 4 nodes? I wonder how come they took 17 of mine. My doctor thought it was good that there were only 6 rather than 16 out of 17. Anyway, just curious how they go about deciding how many to remove.
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Nancedawg just in case TonLee doesn't get back quickly… she refused more nodes being removed because at the time she saw that standard care may change and the risk of LE is higher when nodes are removed. She can give you more details but she really put up a fight.
I know in my case if it were a year later they would have only done a sentinel. But at the time any tumor over 5cm got level I removed. And yeah, I have LE even though I didn't do rads.
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I am interested in the levels of node removal. I had 17 removed and I made a big deal about not having many removed, but my surgeon also knew I would not be getting chemo or herceptin, so maybe she made the decision to do it. There were six, so I guess if I had only had 4 removed, 2 could have remained with cancer. They were also more cancer than node so I guess it was a good thing. I am having radiation starting next week, so it will be interesting to see if I get lymphodema. My surgeon says that doesn't come on until later. I guess we'll see.
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nancedawg I didn't have radiation, only 1 nodes removed. Officially diagnosed after my 4th chemo but I had signs about weeks post surgery0
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So, Lago, you had Chemo, then you were officially diagnosed, then you had surgery? I might be misunderstanding your post.
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No, surgery first then chemo
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Oh wow----I absolutely loved my team of Drs. If I had to interview Drs. they would have gotten my vote. They took care of me like I was there only patient and I certainly wasn't--I remember my surgeon tellin he he so loads of nodes out not cuz he wanted to but it was necessary, he did say u'r fighting for u'r life and I'm fighting with u then I didn't listen LOL I'm sure I told u all of this but bare with me--One of my surgeries was particularly difficult and he checked on me all day and at night he sat with me-He said I know u'r scared but u never show it so here I am. I was OK by then but he came anyway--Of course I said Oh u just don't feel like goin home or something equally silly. My 1st surgery he couldn't release me for chemo for 3 months so many complications I saw him 2x a week and he'd call anytime all the time. And my onc. was unbelievable too--we always hugged and I'd see her every week with 1 long app't every month for years and she had to leave with her group to another hospital--she would cssll during the week and when she was actually leaving she called me and said I was quite a patient ????? and she really loved me and she was so happy how we fought a fiht that she kind of thought wasn't going to be good. So starting with new Drs. here was very difficult but necessary I haven't draw all my conclusion yet but I do know My GP I like, she the one who called at 11:30 one night and told me to go directly to the hospital and she's feel better knowing I was there than waiting til morning. OK she probably had to call but I'm glad cuz she said I scared her and zi like a Dr. who admits there not above all of us. So hopefully I'l start being comfortable with this new team
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Got my call today the Mammo came out good on both girls whew now go for yearly I guess for now on.
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Ang, that is great news.. Congrats..
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Wow you guys great discussion.
I have also hated pink and hate it more now. I read an article in the PS office that was the 4 things you can do to greatly reduce your risk...
1. Healthy diet...I did it
2. Healthy weight....did that too
3. Watch alcohol consumption...did it
4. Have a child and breast feed before the age of 30.... Um this is a problem, no kids.
Then it said but don't worry about #4 because just doing the first three can reduce your risk by 50%.....really 50%, wow my risk must be off the charts.
And I started mamms at 40 and only missed one In 9 years! So truly I believe that they don't have a clue!
The probiotic I take is by Food Science of Vermont. Mega Probiotic-ND. It includes FOS. It's about $30 at the health food store and not refrigerated.
Got my BMX date today , 10/23. I was kinda shocked at how soon, so now I'm scared and happy. It can't be over until it starts....waiting for the final path and hoping the staging doesn't change is horrible.0
