TRIPLE POSITIVE GROUP

KimCee

Binniebin, yes sort of. It's been shedding a lot for over two weeks. I buzzed it two weeks ago and you can see my scalp thru all of it. Oatmeal is an awesome choice, I will try that too. Thank you.

Suburbs

aleuzing, my diagnosis and treatment were the same as yours. Some patients have node biopsies as part of staging; otherwise, some wait until surgery. Then after surgery, if your nodes are negative, radiation is a must after a lumpectomy and may not be required after a mastectomy. You need a flow chart to keep up. I spent a lot of time researching. Ask lots of questions.


The surgical choice took a long time because with chemo before surgery you have a lot of time to consider your options. I considered all the choices - going flat, implants, and diep. Single or double. There are many things to consider. Take your time and ask questions. The surgery reconstruction threads were helpful, but being triple positive adds another level of complexity. Hang in there.

whywhy

SpecialK, you are a walking Wikipedia! Thank you for the link.

SpecialK

whywhy - you are welcome - not really a walking Wiki, I have just been here for a long time, lol!

meg2016

I was originally going to do a trial, they did a second pathology and found that my original pathology didn't tell the whole story. Which changed the course of my treatment, so I am super glad I went through that. I like the fact that at every stage they discuss trials with you, whether you are eligible, etc. If you ask about something they haven't suggested they also are typically already knowledgeable on other trials that are happening.

rljes

Welcome WhyWhy - I too had to struggle with the MO or the facility.  I did not click with My MO, but the facility was great and its the RN's that are there for you.  I had my first Chemo #1 Tuesday and had the Pharmacutical Oncologist go in with me to see my MO - she did most of the talking - so all is well. Waiting is the worst.  I was the queen of procrastination.  I waited 3 months after surgery to get my nerve up to start chemo.  So far everything is ok. Just extremely tired. (spelling doesn't count in here = chemo brain)  

Like Coach VIcky & the others suggested, start on one of the threads like "Chemo in Aug" is a good group, find someone that has the same treatment and follow thier journeys,  Write down questions to ask the Doctor.  See what works for the ones that you follow - BUT REMEMBER - Everyone Is Different!  Each Cancer is different and each SE is different - best of luck - we are hear for  you. 

BucsGirl

I know I probably have brought this up before about the standard treatment, but I still wonder about it. I didn't get weekly Herceptin during the first 12 weeks of chemotherapy. They only gave me Herceptin with Taxol every 3 weeks. I'm concerned because I can't find that protocol anywhere. 

I only ask because I don't see it under the NCCN guidelines.

SpecialK

TampaBayBucsGirl - Receiving your Herceptin every 21 days while receiving weekly Taxol doesn't mean you were getting less, it means you were getting a triple dose. Those of us that did TCH or TCHP received Herceptin on the same schedule as you.

hap - within 30 days is the optimal window, but not the only window. If you don't start within 30 days does not mean you can't start past that. There is some data that indicates that delay beyond 30 days may lead to less effectiveness, but that is not an absolute - as with many aspects of chemo. Some of us experience delays due to surgical complications, or awaiting test results or problematic pathology. I had 14 weeks between my initial surgery and the start of chemo, due to an additional 4 surgeries in that time frame.

aleuzing

They said chemo first was standard protocol since my tumor was over 2cm. Also the surgeons are telling me the survival outcomes are similar between lumpectomy & mastectomy, they seem to be leaning towards lumpectomy. I had grade 2 and the staging was uncertain since I never had my lump nodes biopsied I just went straight to TCHP neo adj chemo.

SpecialK

aleuzing - the reason you are most likely receiving chemo first is that currently Perjeta is only FDA approved for tumors over 2cm when given neoadjuvently. Since completion of the APHINITY trial the maker of Perjeta has asked the FDA to approve Perjeta for adjuvant use for early stage patients, but that approval is still pending and expected at the beginning of 2018.

aleuzing

LTWJ - Thank you for responding. Did you have cancer cells in you lymph nodes after TCHP neo ajv. too? What type of treatment did they put you on after the mastectomy? Also my ER & PR percentages were really high 90%+, were yours similar?

BucsGirl

Oh my goodness. I totally misread that on page 53. Thanks SpecialK!

My Herceptin treatment is over, and I'm still questioning it. LOL!

SpecialK

hap - many who do neoadjuvent chemo don't have a clear picture of their stage, but the types of breast cancer that typically receive neoadjuvent treatment - like Her2+ and Triple Negative or someone with a very large tumor, are less likely to have treatment variation that is dependent on stage. In order for aleuzing to receive Perjeta she needed to do chemo first. Anyone with a 2cm tumor that is Her2+ is going to receive a recommendation of chemo with targeted therapy.

Mommato3

Whywhy,

I had AC (Adriamycin/Cytoxan) every three weeks. My T (Taxol) was given every week for 12 weeks with HP (Herceptin/Perjeta) every three weeks.

SpecialK

hap - by the time neoadjuvent chemo is determined to be the best course of action, one’s oncologist should have a good idea of tumor size and nodal status, and should order PET and/or CT to determine clinical staging. I personally feel that if a port is being installed pre-chemo, do a SNB in the same procedure to get the most clear nodal status picture if imaging or biopsy has not revealed known positive nodes. If distant metastasis is foun, some patients still do chemo but sometimes don’t do surgery, or do additional surgery - or opt for anti-hormonals as the first line ignores treatment.

SpecialK

The drug, Ogivri, is not a bioidentical, but rather a biosimilar - a generic made from human cells if you will, of Herceptin. Essentially it is a competitor, and has all the same potential side effects that Herceptin does.

https://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm587378.htm

SpecialK

I would assume that oncologists would have to advise their patients that they are getting a different drug. I don't know if the drug will be substantially less expensive, and whether insurance companies will push for this drug over Herceptin potentially to control costs - and effectively take the decision out of the hands of both doctor and patient.

KimCee

ok I am freaking out. Had my blood work yesterday and treatment. Today, got a call from my oncologists office telling me my liver function was high. 161, normal range below 40. Repeating blood work Tuesday. I don't drink and do not take any weird supplements. What could cause this besides mets? Freaked out...node negative too

SpecialK

kim - it is normal for Taxol to skew your liver function numbers - your MO is doing due diligence. Avoid anything that taxes your liver any further and hopefully your labs will normalize by the next test.

hap - did you look at the link I posted? It talks about the data the FDA used for approval. The reason people have differing side effects on any of the anti-hormonals is not because the active ingredient is fundamentally different between generics - it is because the fillers and additives are different with each manufacturer. That is why many of us recommend trying different manufacturers to find the one that causes you the least issues - the active ingredient is still the same.

This is from Mylan's site - the Ogivri manufacturer:

"FDA approval was based on robust data from structural and functional characterization using multiple orthogonal techniques, nonclinical studies and pharmacokinetic evaluation in healthy subjects and patients and a safety, efficacy and immunogenicity study in relevant patient populations, which compared Ogivri to Herceptin. The data demonstrated that Ogivri is highly similar to Herceptin and no clinically meaningful differences exist between the biosimilar product and Herceptin in terms of safety, purity and potency. The FDA's decision follows the unanimous vote by the FDA Oncologic Drugs Advisory Committee (ODAC) in July 2017 recommending approval of Mylan's biosimilar to Herceptin."

KimCee

Thanks Hap and Special. I did not know that about Taxol. No Hap, I take no meds, just vitamins and normal supplements like b, d, calcium, magnesium, biotin. Been taking them for a while. B6 is new, but that helps, not hurts the liver. Besides cancer, I am pretty darned healthy...

KimCee

Thanks Hap, I am not taking anything until I get my blood work done Tuesday. I just had no idea Taxol could be the cause. I feel better already. However, in my searching and reading, I found way too many node negative, her2pos, who had mets....scary stuff

Cherry-sw

KimCee, I was told to stop all the supplements at once when diagnosed, had a handful pills every day and was absolutely sure they were helping me to stay healthy

BucsGirl

KimCee - Don't worry too much about the AST and ALT levels for now. I can tell you that my levels were up and down throughout my 12 weeks of Taxol. My MO monitored it closely. I believe there was one time that they gave me a lesser dose of Taxol because of it. I think it was at the 9th week. My levels were never consistently high so it didn't cause him any concern.

Since that time, I've noticed that acetaminophen affects my liver enzymes. I did switch to Advil for pain relief when I was having lower back issues. That seemed to help.

Wellshoot

My enzymes spiked as well. I stopped taking a cholesterol medicine (that I had just started) and stopped taking Tylenol. They were also giving me Tylenol as part of my chemo infusions and they stopped that. I also started drinking a lot of water with lemon. My enzymes finally came down. I haven’t used Tylenol since. I also think it is a potential side effect of one of the chemo drugs. My doctor mentioned that ifthey didn’t come down that they could reduce one of the chemo treatments but they didn’t have to

T-Sue

Danna and Posey, I'm way behind on reading posts but I wanted to pop in to say you both look fabulous! You were both brave to buzz it off during chemo. I was too scared to buzz it until it was ridiculously alien-looking and I regret not doing it sooner. It really does change your look, but I think k your shorter hair (or wig) brings out your features better!

BucsGirl

Wellshoot - I started drinking more water too. I always add lemon if it's available. Glad you mentioned that. Staying hydrated during chemo is very important. It flushes everything out. 

KimCee

Thank you!!! TampaBay, Cherry, and Wellshoot

Tampa...I meant to answer a previous question you had but forgot. I get my Herceptin every three weeks. It is just triple the weekly dose. My chemo nurse said they sometimes do that in my case, work full time, this way my body is used to that dose when Taxol is done. Sorta kinda makes sense, then again, not really. End result, we get the full amount anyway.

So, being a nurse and not practicing what I preach...I don't hydrate well at all. Coffee and coffee. But I have been trying and it has been lemon water. I do get Tylenol before treatment, why I don't know. But I did have a headache in the middle of the night before labs were drawn and I took two extra strength Tylenol. Hoping numbers are down Tuesday. But...you have all made me feel better.

BucsGirl

KimCee - Thanks for the explanation on the Herceptin dosage. I remember reading that the dosage may be different a while ago, but I didn't have an actual confirmation of that until now. Now, I feel much better! 

I drink a lot of coffee too. I get terrible headaches if I skip my morning cup.

Yes, definitely drink lots of water. I was never a big water drinker until the diagnosis. In the beginning, I had to use Mio drops to flavor the water. Now, I drink it plain, or with lemon. It helps to put lots of ice in it too.

KimCee

Tampa...Water is so boring to me. I have been filling my Yeti with tons of ice, water, and lemon. Keep it nearby and sip it. I probably get two down per day, better than I have ever done. I do eat lots of grapes and other fluid fruits, so I am trying. I love carbonated water, seltzer, but have been told to limit that due to osteoporosis, thanks to zero estrogen! My other vise is the worst...Diet Coke...and yes, I know better 😉

Cherry-sw

Hi all, this is my 6th day on EC, of 21, the second day of my wbc shots that are equal to US Neulasta, called Nivestim here. I was expecting bone pain, like growing pain, but instead my entire body is sore, like I overworked every muscle kn my body. It started yesterday around my neck, then around my chest, got really bad at night, I took both ibuprofen and paracetamol. My hands snd feet do not hurt that much, and if I do not move I am for the most time fine laying in bed but even a tip of my nose hurts if I touch it. The clinic says that it must be the wbc shots and I had to take the painkillers, they will draw new blood work on Wednesday. Anyone who went through similar experience