Starting Chemo September 2015; join us!
Comments
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TFoxy20: In retrospect, I probably would have gotten more thorough testing on my tumor at the larger center, but surgery would have been delayed another week or two (after a two week local delay because of some lost paperwork), and I wasn't up for that, especially with HER2. Not sure whether I would have gotten pre-op Herceptin there --- apparently not yet done in this country for smaller (operable-sized) BCs. In any case, done is done, I've lost enough sleep and eaten enough stomach meds over worrying "what if", I'msimply too run down to second guess any more.
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tessu, the lymphedema issues sound horrific!!! 😨 I hope you can get relief SOON.
After 2.5 hours, I got my IV and then was examined. I have a full blown ear infection now which is right above the DVT. Severe pain. They're also running blood work and strep tests. Doc asked as he finished, "Would you like something for the pain?" Why yes, yes, I would. I am currently looped out on morphine. 😝 Hubby is going to have to come pick me up when I'm done. 😈
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CarolinaAmy, I'm SO GLAD you're finally getting taken care of. I am shocked the problems all you ladies in the US are having with getting adequate pain meds! WTF!!! --- At least that has not been a problem for me. So if my BC care may not be tops, at least I've got pain pills. If they send you home on oxycodone, be sure to take something profylactically for constipation. I am also pretty much looped out on that (basically oral morphine).
Your daughter's letter had me crying, too. I'm so glad you've got her support through this
Holding you in my heart and thoughts and prayers (((((hugs)))))
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tessu- even going to a bigger cancer center initially I still have days where what ifs pop into my head. My biggest one is the decision for what chemo treatment I was going to do. A women I spoke with who has been on this journey told me to make a decision and not look back. Know that you made the decision that was right at the time. I am still working on that but I think she is right.
CarolinaAmy-I am sorry you are going through all this extra crap. If one thing can't be enough right now. I hope the morphine helps you sleep tonight.
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TFoxy, thanks. I will have to work on that. I guess I read too much on the HER2 positive threads here, and am scared how so many have mets already during first chemo, or almost immediately after.
One thing I need to change and soon: I need to try to focus on enjoying life now (as much as is possible with all the side effects and other physical problems I'm having). Someone posted that their mother "finally got what she wanted" --- She had apparently been living in fear for ten years after successful chemo, afraid to travel or do anything else out of the ordinary because she was scared of a recurrance away from home, then died of something unrelated to cancer. I do not want to become that woman. Ihave spent too much of my life living on the sidelines (partly for non-health-related reasons), which is my deepest regret now.0 -
Lindy C thank you I will try that. Pain eventually after 15 hrs left ugh that was the worst pain ever.
Southern charm- I'm going to take a puff here and there too, when I get pain nausea. To get me through this.
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aww Amy & tessu you ladies need a break from all your crappy crap. I hope there is a time in the future when we can all look back and think how did we ge thru it all.
As far as treatment centers I went with my 2nd opinion which is a major teaching hospital with a huge dedicated cancer center. My first opinion surgeon had me to wait 6mo when the tumor was found because it was benign looking according to radiology I insisted on a biopsy but got told no to wait. So I did regretfully & it was cancer. That same surgeon told me I had cancer over the phone & tried to reason why he had me wait to biopsy. He also made it seem like a death sentence to be a triple neg. Well I ditched him & went to my current treatment center 1hr away. I could go to one of their satellite hospitals 1/2 hr from my home for my winter rads but I trust my team & that's all that counts.
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on a brighter note I go to my look good feel better class this morning. I will post later how it was. Tomorrow I plan on trying to go for a mani pedi to relax before my last AC Wednesday. After that I start DD taxol which brings a whole new set of worries. I gotta de-stress. Thankfully mo said mani-pedi was ok & the salon I go to is very clean & always careful because they already know I have bc.
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Amy I hope you got home ok and you're feeling better.
Tessu I'm thinking about you this morning.
I hope everyone has a better day. Mornings are hard. This thread moves fast. I've got you all in my prayers.
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Does everyone know thier Oncotype score in here? Just curious.
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Shopgal- I went to LGFB and enjoyed it. But be careful of the make-up they give you. When I got home I checked mine on an independent website ewg.org skindeep and found 75% had either carcinogens or endocrine disruptors. There was a national campaign launched this month to stop this practice. Not trying to spoil the party, but it's pretty bad when they give this stuff to cancer patients.
It has been found that costmeticians who handle cosmetics carry a risk 5 times higher than average population forbreast cancer. Makes you think.
The cosmetics industry is one of the least regulated in the US. The FDA has banned under a dozen substances, while the European Union has banned 1,000.
Tessu: do you have any thoughts on the differences between products available in the US vs what is sold in Europe? I know Finland is somewhat different, but wondering if you have an opinion.
I felt very hurt that I was in the middle of chemo and I was invited in as a friend to LGFB then handed something that was linked to more cancer. It is likely that they will soon change the format and perhaps keep the education portions of the class, but pressure is beingbrought to bear to stop slipping dangerous product in. The bags are not uniform. Each ones have different products. So to be safe, look them all up, or just refuse the bag.
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My oncotype score is 25
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Aga someone messaged me and asked why I chose chemo. Why did you? 25 is lower too. Just wondering or maybe giving her a wider answer.
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What cosmetics are in Look Good Feel Better Bag
This is a good explanation from a reliable sourc
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CAmy: being in the ER always sucks, but to have an ear infection too on top of the DVT, double or triple sucks! Hubby had a DVT a few years ago (from a long airplane flight, so he wan't dealing with other (*%()* on top of it), and it is a long haul of medicine, but doable. I am so sorry all this is happening to you and glad they finally gave you pain medication. HUGS!
tessu, big hugs to you too and to everyone having a tough day to start the week.
Jackbirdie, thanks for the heads up. I am just not a makeup person but if the brows go and I change my mind I will definitely check what I am using.
This is the start of my third week, so one more week before Round Three, and this is the easiest week. Which means: off to work. No Columbus Day holiday for me :-(
My score was high. Hence the chemo. MO recommended it and felt it was a deciding factor given that my tumor was fairly large (just over the edge from Stage 1 to Stage 2), even though node involvement was negative.
Hope today is a better day than yesterday for all!
Octogirl
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No oncotype given for triple negative. Automatic chemo.
As for the cosmetics, one of my closest friends is launching an all organic all natural, affordable cosmetic line next month. I'll be happy to give more info for anyone interested. (She's also a pro makeup artist
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I asked my MO what my oncotype is. I thought the last one did the test but turns out she didn't in her last lab work. She told me I'm in the 20s or possibly low 30s, but at any rate, it's a high recurrence for what I have with my ki67 at 50 and grade 3 aggression. So no point. I'm going to be on a very tough regimin. Anyone else in here doing AC/taxotere? I see a lot of TC but no A added, which is great for you guys but if there's any company on this one..?
Wishing you all a better day than yesterday! I go to the dentist today to get my broken to the filling tooth temp fixed. As long as you haven't started chemo, you can get dental work done. Don't want to do a crown right now with the expenses now so that'll have to wait, a long time.
xo
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Jackbirdie- It's too bad they are using regular cosmetics for cancer pts! That actually pisses me off because most if not all their audience seeing them have cancer! I would have expected all natural like what Whole Foods sells. So while great it's high end stuff but "great" that it's carcinogenic.
I have seborrheic dermatitis on my face and anesthesia kills me. After bmx face was burning and red. After port procedure same but not as bad since shorter sx. With chemo, oh wow. I have steroid cream and ketazanole 2% cream that I use when it flares but even that doesn't help much after anesthesia. If the SEs don't kill me, my seb derm during chemo will. So no way can I use anything but maybe Whole Foods cosmetics. I intend to be a hermit anyway. Thank God I don't work at least so I can hide.
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Jackiebird I had already read a previous post you had made on another board about the lgfg makeup and am thankful for the info. I will definitely look up what they give me. I am very careful about what products I use anyway. I am really looking forward for any tips and additional education that the American cancer society can provide at the workshop.
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No oncotype for me.
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No oncotype for me either. Don't think they do it if have node positive. My Ki67 was 72%, doctor said 30% was a high score.
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HI guys,
Tough morning today. This cycle is totally different than the first for me, not what I was expecting at all.
The first cycle I had the big D really bad, for days and days (doc says due to the loading dose of the perjeta). Now I'm on the big C train. This sucks! I can't decide which is worse.
My son's preschool is closed today for the holiday and I'm working from home. Thankfully I was able to get one of his teachers to babysit today. I have no energy, am so drowsy and nauseous, I definitely couldn't have handled him on my own today. Not much working is going to happen today either.
I hadn't told this teacher about my dx. I told her this morning when she arrived and she just grabbed and hugged me. Made me start to tear up. I had only told the head of the school, not really wanting it to get around to everyone there.
I too carry a notebook everywhere I go, I can't remember when I last took meds if I don't write it down.
Feeling pretty low and low energy today.
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Wow Southern. I think we spent an hour talking to the MO at the initial consultation. The follow-up before the first transfusion was about 15 minutes or so. I end up seeing him like every other infusion. The other times I meet with his nurse.
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my initial visit was like 2 hours with my MO. After that I just get the infusion nurses and the nurse practitioner. He pops his head around the curtain and says hi on infusion day but that's it.
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My MO new pt visit was 2 hours. 15 min for a FIRST consult is absurd! Even for a follow up unless you don't have issues and it's just a check and how are you doing thing.
I have the am/pm Sun-Mon pill box. Yellow is the am and blue is the pm. That way I can check to see if I've popped the am and the pm meds to be sure. Too bad they don't have a midday one on this as well since it's not just am and pm we pop pills.
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I believe the oncotype tests are for hormone positive, HER negative, pre menopausal type cancers with negative BRCA. The other parameters have thier own recurrence statistics. I was told my dx was the most common form of bc. I guess the oncotype just gives another layer of info. I wonder what the percentage spread is on what types of cancer gets the most research and advancements in treatment?
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Money is the reason I think Southern. If you have a Whole Foods there, check them out. Or other health food stores may have makeup counters. WF's is a nice one with lots of choices. With my skin condition, I'm scared of natural ones too. :S
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Annie: I bet it's stage IV. I've seen a lot of ladies on that forum talk about entering clinical trials. Of us all, if it can be only 1 stage to delve into then I'm glad it's them.
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yes, Annie. I think you're correct. My oncotype was 17 (high end of low) and my tumor 1.9 (again borderline). So with much talk with my MO here and someone at a major teaching hospital, I decided to go for chemo. The big study for people like us (oncotype 11-25) re: chemo's impact on recurrence has not finished and I didn't want to have regrets of not having done all I can.
Very, very personal--my dad was an MO specializing in BC so this is all so much more surreal. He died in 2007. I miss him even more. He was amazing: http://www.cancernetwork.com/articles/remembering-...
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wow I'm not sure I would have done chemo if I had fallen under the low line. My tumor was 1.5 cm. I'm not sure. My ER was 100% and m PR was 98% so maybe I would have done the chemo.1
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