TRIPLE POSITIVE GROUP

twiggyOR

Cherry, I was given Zofran (pills) at the infusion center as soon as I was put in a chair. Then they would hook me up to the saline bag while we waited for the chemo drugs to come from the pharmacy. They didn't order the hard drugs until my labs had been reviewed. It was 30 minutes or more before the first chemo drug arrived. Good luck with your infusion. I found the fear/anticipation was way worse than the actual process. Plan on being there all day and bring stuff to entertain yourself (book, tablet, crossword, etc).

PoseyGirl

thanks, Twiggy. Very informative article...

Dannajae

Your scenario sounds identical to mine. I see my MO for the first time tomorrow, so I guess we'll see.

Taco1946

Dannajae - some of the worse is not knowing what comes next. The TP really threw me for a loop. I was already done with surgery and brachytherapy before my final path report came back. Did 8 sessions of Taxol and Herceptin until the SE of the Taxol did me in. Have been on just Herceptin since April and started AI in May. Get your profile posted and make it public so folks can help you even more. Good luck and welcome to this club we didn't want to join.

Dannajae

I completed my profile. I don't know why it's not showing.

Dannajae

Thank you, T-Sue!

Dannajae

Taco1946 -- figured out how to make my profile public. I appreciate everyone so much. Will report back tomorrow night after I meet my MO. My lumpectomy was 7/13 but I was derailed a couple weeks due to Cellulitis at the incision site of the lymph node biopsy.

Taco1946

Dannajae - I saw you got it (looks like on the first try although I needed some coaching attempts.) Good luck with your MO. Being HER+ you probably will need chemo. Look for other threads on BC.org as you know (and want to know) more. The group that "started chemo in Feb. 2017" has a private Facebook account and it has been fantastic. We've watched hair fall out and come back in and had both lots of tears and laughs.

Dannajae

Taco1946 -- would love to find that FB group.

Cherry-sw

Thank you twiggyOR, I have not taken any yet, they told me to take it 30 min before the infusion, I get nauseuous easy. I will only be given cortisone before the infusion. I hate all this stuff and that this is happening, could not sleep much at night

twiggyOR

I also had prescriptions for compazine and ativan, both for nausea. I took them regularly for the first few days to prevent nausea. It's easier to keep it at bay in the first place than deal with it after it takes hold.

It all sucks but you can and will get thru it! Find the group for those starting chemo in August 2017 and be active in it. You will all be going thru this at the same time and you will form some amazing bonds thru this process. I still communicate with some of the women from my group two years ago.

Cherry-sw

TwiggyOR,

I am already in the August chemo group, everybody here has been so helpful. I have to go to the clinic now

moodyblues

I have been receiving the Neulasta on body injector before I leave infusion area.  How many get it the day after when they check your labs?  Wondering if I really need the Neulasta at all.  Am I getting it unnecessarily?  For those who go the day after, did they find that you did need it every time?

coachvicky

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

Taco1946

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.

moodyblues

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

shelabela

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.

coachvicky

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

moodyblues

Thank you Vicky!

SpecialK

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

SpecialK

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.

SpecialK

hap - I know, just explaining it in terms of breast cancer treatment and the decision making rubric. Others reading may need the explanation

Cherry-sw

moodyblues, I am not getting any Neulasta, my oncologist said they are doing it only if needed

Cherry-sw

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.

SpecialK

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.

moodyblues

SpecialK.  Thanks for the explanation, makes total sense!

Cherry-sw

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

SpecialK

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.

Lita19901

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.

SpecialK

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.