TRIPLE POSITIVE GROUP
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I went the day after for the shot.
The conversation with the Oncology Nurse was extremely important (to me) in understanding what to expect and how to manage those side effects. These Nurses really kept me motivated to move, eat healthy, and they answered everything they could. I was never rushed.
May be different for others.
Vicky
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Dannajea - follow Cherry-sw's advice. Look for a thread on the BC site that says "starting chemo in August." Definitely do that if you are going to need chemo. I think there is probably one by the month for rads too but I was done before I started looking. Someone far smarter than me was able to set up the private facebook chat for all of us in the February chemo group who chose to do it. I think there are about 47. Most did although I see a few who are still just using the BC site. The private chat has allowed us to do pictures etc. which we couldn't have done here. This thread is a great source of info from those who have "come before us" but the other group has really been for cheerleading, shoulders to cry on, and places to rant. And for regular Facebook users, it's easier to access. I use both.
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Vicky, Did they do labs before they gave you the shot every time? Did you end up needing Neulasta every time? I've run in to a lady who never needed it per her lab results.
Thanks,
Melanie
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I also use this and our facebook group. Wonderful support on both.
I finished chemo on June 12 and now after all this time my toe nails are lifting and falling off.... I had 12 weeks of Taxol with very little side effects. The treatment I had of that was in april. I don't understand why now....
Oh well.
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Moddy Blues,
My order was:
Labs day of treatment.
Met with Oncologist after he reviewed labs.
Treatment after Nurse went over labs and dosages.
Next day, shot, no matter what my labs were.
The only change was an iron infusion in between two rounds when my saturated iron dropped 50 points.
Vicky
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Thank you Vicky!
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moody - the nadir (low point) from chemo doesn't occur until 7-10 days afterward, so having a CBC the day after chemo would not accurately indicate the need for Neulasta. The CBC done the day of chemo usually is the test that is most indicative of your current WBC and neutrophils, and whether your counts are high enough to safely receive chemo. Because Neulasta has dosing restrictions - must be given within 24 hours of chemo and no sooner than 14 days before the next infusion - some oncologists give it in a prophylactic manner because if they wait for 7-10 days to check WBC during the nadir, it will be too close to the next infusion to administer Neulasta. Some oncologists do wait to see if Neulasta is needed, and some insurance companies won't pay for it without demonstrated need, but trying to remedy low WBC is problematic mid chemo cycle
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hap - it is a calculated risk most oncologists will take when giving Adriamycin/Cytoxan, or Taxotere/Carboplatin because of the deleterious effect the harshness of these drugs cause to neutraphils and WBC with either dose dense or every 21 day administration. This protocol was developed out of need since a opportunistic infection due to low WBC during chemo can kill patients. It is not given with weekly Taxol for two reasons, it can't be administered weekly for the timing reasons I described above, and Taxol doesn't usually have the same degree of impact on WBC as these other drugs.
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hap - I know, just explaining it in terms of breast cancer treatment and the decision making rubric. Others reading may need the explanation
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moodyblues, I am not getting any Neulasta, my oncologist said they are doing it only if needed
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HapB, yes now I understand it, I have just red SpecialK's post on it, twice.
SpecialK, you are truly a Wikipedia, how do you even know all this stuff. Reading it online is one thing but you also have to systemize it, and your vocabulary is very is not scientific dry, it is like reading popular science. I am reading its Swedish equivalent but hey they take a lot from the bigger papers and journals.
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cherry - Wikipedia, lol! My family would find that amusing - I would go through info withdrawal without it and Google. I have a lot of info because I have been on this site with a lot of smart people for 7 years, I have the kind of personality that means I'm more comfortable the more I understand, and the amount of practical experience I have had over time. Because you are getting weekly Taxol you can't receive Neulasta due to the dosing restrictions, you would be likely get daily Neupogen, similar drug but can be used with weekly chemo.
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SpecialK. Thanks for the explanation, makes total sense!
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SpecialK, it seems we have the sae personality when it comes to understanding of things. My husband and my GP keep telling me that reading online will not give me any relief or make me calmer but I am telling them that I need to know what I am dealing with, sooner or later you will have a more systemize picture adding some puzzles of new acquired pieces to it, it is important to me. I am still reading the beginning of this thread I really see how you exchange the knowledge between each other, very informative. I have another question, I just saw a profile similar to mine in Starting chemo August thread and this lady was doing AC plus Taxol. I know HapB said that weekly Taxol is a the standard protocol but why do some people get AC. I asked my onc and he said that this simply recommend for my diagnosis, period. And that AC would mean the delay of Herceptin too and is much tougher treatment, but I mean If I am anyhow getting chemo I may as well do even some tough rounds Cherry
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cherry - the hardest thing to know in the early stage is what sources to read from - particularly in terms of being Triple Positive - some of the information on the web is outdated and more scary. Determining which info is as up to date as possible, and credible, is key. As far as understanding why some people get certain regimens, I believe it comes down to geographic location, center policy, and oncologist philosophy. It is also important to understand that when it comes to cancer treatment, more is not always better. Our natural inclination is to want to take the strongest drugs, do the most complete surgery, etc. to eradicate the cancer, but the problem with that approach is that there is a lot of collateral damage. For you - with your stage, your oncologist is offering a newer regimen that has been shown to be effective in stage 1, or less than 1cm and node negative breast cancer. This is a more forward thinking approach than giving someone with those same stats the old school regimen of AC-TH. To me that is somewhat reactionary and potentially signifies an oncologist that perhaps has not kept up with current studies, or is older and has only given this regimen, or is at a center that gives this regimen to all of its Her2+ patients, or AC-T to all breast cancer patients. For a stage 1 patient with no positive nodes it is the equivalent of shooting a fly with a cannon - it may take care of the cancer, but it subjects you to the potential for some nasty side effects, possible permanent heart disease from the Adriamycin, and cumulative issues from a combination drug regimen. With a single agent regimen like your oncologist is using you have far less possibility for problems, and great chance for effectiveness because it is combining the targeted therapy with a taxane. My oncologist does not prescribe AC-TH(P) for his Her2+ patients, he uses TCH(P) because of the cardiac issues that can come with using Adriamycin, then Herceptin. Even though the two drugs are not infused at the same time, due to the potential for permanent heart issues from the first dose dense combo, closely followed two weeks later with Herceptin, he agrees with Dr. Slamon, the doctor who brought Herceptin to the market, that TCH is the better choice, wile still offering efficacy. Depending on where some docs went to school and practice you will see regional differences here in the US - a lot of east coast oncologists use AC-TH, west coast use TCH, newly out of school versus docs who have been practicing for a long time, there are lots of reasons different choices are made, but don't let it worry you.
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Cherry - I took a peak at the August 2017 chemo thread and it appears that the person you're referring to is ER/PR negative and HER2 positive rather than Triple Positive. The prognosis for ER/PR negative/HER2+ BC is significantly worse than for Triple Positive BC so it would make sense that her chemo would have to be stronger.
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cherry - lita makes a very important point, I assumed that the member you referred to also had a TP diagnosis, and my comments were based off that assumption. AC-T, plus targeted therapies would be a standard of care choice for a patient with Her2+, but negative hormonal receptors. Regimens are chosen with the entire clinical profile in mind, not just stage or tumor size.
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I am hormone and Her2 positive and had the AC followed by Taxol. We are a regional cancer centre drawing in patients from hours away. So I think there must be more thought that goes into it versus hormone receptors. I am guessing stage. Overall profile, as SpecialK says. I was jus scanning over material on it, and can see no reference to AC being used for certain subtypes over others. AC seems to be one of those gold standard treatments used for local and locally advanced bc. Decisions to use other treatment combos that are proven alternatives are likely up to the oncology team and their preferences. That's what I get from info out there.
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Lita1990, you are right, how could I miss it, I am becoming very drowsy and missing things I guess, it did not usually happens to me. I also have flashes at the corner of my left eye, my GP wants me to check them at once, which in this country means tomorrow 8 AM at the earliest. I may be a retina issue and I have been having it for a while now and then red somewhere in this thread that it could mean problem and called her, she said we need to check it up as soon as possible. I just though, right, just something I needed now.
SpecialK, thank you, when I read your explanation it soothes me, really, it is like reading a really good edited text composed in a popular and pedagogical way, this is also a talent, you should take this credit. If I would have got the same explanation from my oncologist I would have probably felt calmer, like I were participating in the process. I called another oncologist who will be arranging for the second opinion and she said that T regimen for my stage become a standard protocol a couple of years ago based on the international studies.
Once again, thank you for your help guys.
Cherry
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Posey - I think the Taxol + Herceptin protocol is used only in early stage BC but I'm not sure what that includes - Stage 1 and 2 or 1-3
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Here is a link to the summary of the Taxol/Herceptin trial for early stage BC.
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I have good news that I wanted to share.
I don't know how I could be where I am today without the support and knowledge sharing from this forum.
My port is GONE!
It was bittersweet seeing my Surgeon yesterday. He is the person that saved my life. Had he not pursued looking for the missing marker in the first biopsy, the other cancers would not have been found. By the time they would have been discovered, I know I would have been stage four and the cancers elsewhere.
He removed the port in his office and it was as easy as he had promised.
This part is funny. He called DH yesterday and told him to have me put Lidocaine over my port as if I was having treatment. I did. When he gave me the shot to numb the area, he said I shouldn't feel it because of the Lidocaine's numbing effect. I laughed. I said Lidocaine (I believe) is given to "psy" the patient into believing it works and the port won't hurt. He said his Mother (recently diagnosed with a blood cancer) said they same thing. Yep. We have ports. We know. I think Lidocaine is really used so that the lab tech has to clean it off with some pressure to ensure the port is in the correct place. I once forgot to use it and it didn't hurt than much more than usual. Maybe it works for some but never did for me,
I could move my neck at night and not feel the tug of the port. I did keep it. I am not sure what I will do with it yet.
I won't have a dent in my chest and should have no extra skin sagging on the breast. My port scar is very hidden. My Surgeon had me sun bathe before he put it in and he place it under my swim suit strap location.
I am really feeling the end of all of this.
Vicky
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Vicky, That is great! 1 Step closer to being done with journey!
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Thank you, SpecialK, for posting the study. It's the size, then, in addition to stage, that decides who has to have more than just Taxol and Herceptin.
I'm wondering if anyone here has knowledge of chemo drugs that don't cause peripheral neuropathy. I have an inherited PN that is annoying but doesn't cause pain or numbness. It's my understanding that Taxol and the other taxanes cause PN. I can't risk treatment that could cause adebilitating advancement of this condition.
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Congratulations coachvicky! your surgeon seems to be a very thoughtful man, he cares about the looks, asked you to sunbathe before the removal, very kind of him.
Cherry
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SpecialK, I saw the results of this study published but not in the same format. I did not know that it was that old, I though it started at 2010-2011. I understand that it is what they based this treatment on and the overall results I saw published in different articles seem to be very good in terms of disease free survival. Thank you for posting it. I got it confirmed for my from the other clinic that this is a standard protocol for my stage so I got my explanation and it feels good. I is just sometimes I see that people get AC but as lita19901 pointed out it was not exactly the same diagnosis. Cherry
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lita - it is usually taxanes (Taxol, Taxotere, Abraxane) and platinum based agents (Carboplatin) for breast cancer treatment that cause CIPN issues, temporary for most, but permanent for a number of patients. My mom had a degenerative neuromuscular disease and also had extensive PN. She received Methotrexate, single agent, for the acute onset of this disease when she was in her late 50's, and I believe it advanced her PN. I certainly understand why you are leery about making your situation worse. It is a quandary since the targeted therapies for Her2+ are usually paired with taxanes. What does your oncologist say about what might be used?
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I was supposed to see my MO tomorrow but because of an unrelated medical thing it's been postponed until 9/18. I did email her but haven't heard back.
I didn't realize that Herceptin was usually paired with taxanes. Rats.
It's not like I'm a concert pianist or famous artist but I do all kinds of needlework all the time with the dolls I make and making them keeps me sane. I don't want to lose this
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Hap -Surgery was 7/21 so I'm okay.
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Hap - Some study I read said chemo started in 90 days has better outcomes
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