TRIPLE POSITIVE GROUP

deni1661

Kimcee - I LOVE your wig, you are beautiful! The color is awesome and looks totally natural. Good luck with your surgery on the 15th, you will feel wonderful once those expanders are removed.

Bartley, thank you for sharing your experience and congrats on 7 years NED. That is so encouraging for all of us. I especially appreciate the balance that you have achieved with your lifestyle. It's important to reiterate we are all individuals and we need to find what works for us.

Posey have a wonderful time in Punta Cana - the sunshine and relaxation will be wonderful for your immune system, lots of vitamin D! I am going to check out Dr Schwartz, thanks for posting!

Bartley

You are all very welcome. Good luck to all of youwhatever path you choose.

moodyblues

Bartley, 7 years NED is exciting!  Thank you for posting your success story, we all need to hear this sort of thing more often.  Here's to many more years NED.

meg2016

My MO (at Dana Farber) along with the whole team are not prescribing Nerlynx. They were concerned about side effects. I am right in the supposed "target population" for the drug and due to that am always eager to explore options for reducing recurrence risk. But my MO really did not like this drug for me and I am trusting her. I am on Zometa, which she felt had more benefit for the risk for me (obviously different benefit, prevention of bone metastasis.)

Ingerp

Jstarling--I'll be a few weeks behind you. Surgery tomorrow. Fingers crossed, ladies!!

deni1661

Ingerp - sending prayers for a successful surgery tomorrow! Remember, only positive thoughts as they wheel you into surgery - have faith and you will hear great news upon waking!

Jstarling - good luck at your appointment tomorrow, ask lots of questions :-)

Hapb, I hope this next storm doesn't cause you any problems. Where's spring - enough already!

meg2016

HapB- I'm not going to lie, the first one knocked me completely on my butt, which I was not prepared for. I've only had the one infusion. I wasn't expecting to start that day, but my MO gave me the option to and I travel to Dana Farber for treatment so I like to get all the things done when I'm there. So I went ahead with it without over-researching like I normally do. MO told me possible "flu-like symptoms" but the night of the the infusion I woke up to chills, aching, teeth chattering, it felt like actual flu. Then for two days I was cannot-get-out-of-bed exhausted and bones ached quite a bit. Of course after coming home and researching on these boards it sounded like exactly what lots of people experience with it. It did sound like there are pre-meds (benadryl, extra fluids) that can help with this as well as taking Claritin before and a day or two after (if you had Neulasta you maybe did this and it sounded like it can help in a similar way.) I also read that it is often worse your first infusion and that some people tolerate it just fine. So I will prepare better next time and ask for the fluids and will do Claritin. I was grateful last time I had it on a Friday morning, I was useless that weekend but back to work on Monday and was fine just maybe a little tired after that, so I will plan it again for Thursday or Friday. I am happy I'm getting it, feels like I am doing something proactive and the stats on it look very good from what I've been researching.

Magari

Bartley - Thanks so much for your post, and congrats on 7 years NED!

Ingerp & KimCee - Best of luck with your upcoming surgeries.

Spoke briefly to my MO about Nerlynx today at my FINAL chemo session! She said that I am not a candidate, so no need to concern myself with it.

I will be receiving Herceptin/Perjeta infusions every 3 weeks until November (thank you, Genentech - a Bay Area-based company!) And some sort of hormone/AI therapy that has yet to be discussed.

meg2016

HapB- I am already finished with my Herceptin, so I started it on its own. I will say I felt completely fine when I left, felt good enough to go to a concert that night and dinner... then woke up a 2am feeling not so great. I fly for my appointments and had no problems flying back home that day. So you probably would be fine to drive yourself, but if you might need or want benadryl better to have someone drive you. I am trying to decide whether to have someone come with me next time. I also just get it twice per year so have time to figure it out for next time.

Ingerp

Hey ladies—I’m home from surgery and all went well. SNB looked clean, although there will be a later, complete pathology report in a few days/week. (My BS takes out the node, cuts it in half, gets a preliminary report while I’m still on the table, and sends the rest for a more complete inspection.)

So—all in all good news!!

Ingerp

Thanks, Hap. I took tomorrow and Thursday off and I’m not *great* at taking care of myself but am trying to give myself permission to be *really* lazy for a bit.

KimCee

Thank you all for the wig compliments.

Magari, I do believe it is Premium by Gabor.

Bartley, super awesome, thank you for posting. Congrats to you.

HapB, I am just North of Naples. Can hook you up if you move down here. My doctors down here are doing the same treatment that my NJ/NY doctors would have done.

---

KimCee

Yuck Hap...I remember it well. Moved down two years ago after a snow filled NJ winter. Come on down 😁

deni1661

Ingerp - great news so far, glad the surgery went well and things look good at first glance! I pray you have clear nodes and margins on the final report.

Hapb, you are really getting hit over there. I hope warmer temps are on the way and the snow melts quickly. No more snow for you!

Jstarling

Ingerp, good news. Take care of yourself.

I had my visit and I have a plan. Soon will begin 6 rounds of Taxotere, Herceptin and (?) three weeks apart followed by radiation with the Herceptin at 3 week intervals for a year and hormone blocker pills after that. I was also told I would be ok for an IV rather than a port when I asked if I could swim. But now I wonder if that is a bad idea... any other advice. I am expecting a call from the office with more details in the next day or so. But at least things are going forward!

astyanax66

Wow! KimCee, that looks amazing! Great choice

astyanax66

Hi, all—had my post op visit yesterday and port placement today. What a whirlwind! So, this was a small and early yet very aggressive tumor. I’ll do chemo, herceptin for a year (starts at first chemo), and then radiation. I’ll also have an aromatase inhibitor. All is healing up well. I feel like I had better OR care for lumpectomy, but the important people (aka my onco surgeon and all th pet nurses) remain awesome. Hope everyone here is well. I know I’ll have chemo questions once I meet with medical oncologist on 27th. Chemo expected to start around April 5. Btw, while not for everyone, a port is going to be good for me and my weeny veins. I can hardly see it. I can do any activities I want starting in 2 weeks....but again, that’s a sample size of 1....:

Juli24

starling, you might want to ask more questions about a port and swimming. It was my understanding that once the port was healed you could swim. They were only worried about infection until it healed. I swam with my port throughout treatment. Even went to Mexico on vacation with no issues. Having a port was a great decision for me.

I also had Taxotere rather than Taxol. I wanted to throw the book at this demon! I have hair now.....only permanent hair loss is underarms & im not complaining!! By trade I spent my life working as a paralegal retiring when I just couldn't justify what some lawyers would do to make a buck. Part of the reason our health insurance is so out of wack (amongst many issues) has to do with the flux of malpractice lawsuits. Many of these were wholeheartedly warranted but an equal, if not larger number, were filed by unscrupulous lawyers (ambulance chasers) wanting to make a quick buck. In the long run it hurts everyone. The fact that the Taxotere lawsuits are advertised on Facebook should tell you something! I would like to see substantiated numbers on the statement “a lot of women suffer permanent baldness" and “failure to warn". I go to a very large cancer center, have met more people than I can count and have not heard ONE complain of permanent baldness. I WAS warned of potential side effects of Taxotere by PAs, nurses and my oncologist. Again, I am not saying that no one has suffered from permanent baldness but I do not know the numbers. IMHO, unless you have suffered a specific SE or have conclusive unbiased facts, comments as quoted are heresay akin to scare tactics. Bottom line, I would have gladly accepted permanent baldness if it gave me my best chance at beating this cancer. I am truly sorry if this sounds harsh. I am basically a super positive person but will speak up when I feel something isn't fair. Positivity is a wonderful addition to medical care & costs nothing! Hugs to all

Magari

Jstarling - I believe I have the same infusion plan you're going to get - 6 rounds of TCHP chemo, followed by 8 more months of Herceptin and Perjeta only, on an every 3 week schedule. I have lousy veins to begin with, but for me there was no discussion of not getting a port. The surgery was not a big deal and I've been glad to have it both for my infusions and lab draws. I had mine placed on the side of my chest near where my armpit starts, so that it wouldn't show.

Taco1946

astyanax66, Although I know HapB had trouble with her port, I am really glad I had one. I don't swim but played golf all the way through. Can't believe that swimming will be a problem. It's a lot of sticks to get through a year of Herceptin. Anyone who is getting a port, I do recommend you have your port placement at least 7 days before first chemo. (Just went back to your post and see that you have that much time). Give it a chance to settle down before the chemicals start. I suggest you look for a thread on this site like "starting chemo on___". My Feb '17 group has gotten very close even though we had different diagnosis. But we have laughed and cried and lost our hair together and are now watching it grow back. There's probably a taxotere thread too that will give you ideas about questions to ask MO. Herceptin can be hard on the heart and you probably will be told to get an echocardiogram every 3 months.

BJI

Jstarling, I had my port placed the day before my first taxol\Herceptin infusion. I 've had no problems with my port, use for blood draws also. The nurses are great at accessing the port, my veins are just ok. In fact I am thinking about keeping my port when I finish Herceptin in May, just in case.

ElaineTherese

BJI,

I'll be four years out from my diagnosis in June 2018, and I still have my port! My MO asked me at my last appointment when I'd be getting it out, and I mumbled something about being superstitious. For me, I'm 10 minutes away from the infusion center, and I visit it once a month to get Zoladex. So, getting a port flush is no big deal for me.

By the way, I swam twice a week through chemo with my port and it was fine. My surgeon told me to wait a few weeks after insertion, and then I was good to go.

SpecialK

hap - wanted to point out that “early stage” breast cancer includes up to stage IIIA, and Taxol and Herceptin in the DF study (and NCCN recommendation) is for those who are node negative and up to 2cm, so essentially Stage I, and you could even say IA. To say it is approved for “early stage” is a misnomer.

I am wondering where you got the 15% figure on permanent alopecia from Taxotere? I have never seen that number and I think it is an exaggeration. I personally believe that the actual figure is between 6-10%. The Taxotere lawsuits, and they are individual suits, not a class action - I believe roughly 2,300 of them, do not stem from the hair loss itself, you can’t sue for that. The lawsuits are based on whether patients were made aware of the possibility that their hair might not grow back. I was aware of this in 2010 and had a conversation with my oncologist, and it was discussed on this website as long ago as that. When I was treated my MO said of all the patients he had treated with Taxotere (he is with the largest private oncology group in the US) he had onlyone patient whose hair didn’t return. If the 15% figure was accurate there would be more people on this site discussing this, and I feel more would be filing lawsuits. To file, you had to be treated prior to 2015 - that is the date labeling was added to include the warning.

Juli24

I tried to verify that 15 percent Taxotere number also searching the web. Wow! Pages and pages of law firms begging to be picked to take advantage of a cancer patient’s personal nightmare. I put them in the sxxxxxtink ribbon category. Very shady to say the least.

Elaine, I’m in your camp keeping my port in as long as possible. I too claim superstition but in reality my veins are impossible. My onconlogist doesn’t have an issue with it & just asks periodically knowing what my answer will be. (You gave it to me - it’s mine & im keeping it or something to that effect!!). With the port it is so easy with little to no pain. I too live close to the cancer center so flushes aren’t an issue. Even now.....5 years after the fact, I still have labs every other month. I refused AIs so they watch me pretty close. I have chemo/blood draw shirts I wear every time I go. They are comfortable & button up front for ease of getting to the port. Mine shows just a bit in some swimsuits but I’m beyond caring about what people might think. Rather....I am just thrilled I am swimming and still living and enjoying life

SpecialK

hap - Under the staging criteria for the time you and I were diagnosed, Stage III is divided into three categories, Stage IIIA, B & C. IIIA and below is considered “early stage", B and C can involve breast muscle or skin, or collarbone lymph nodes, or more than 10 axillary lymph nodes, and is considered advanced. Stage IV involves spread outside the loco-regional breast area - involving distant metastasis.

On the subject of ports - I kept mine for 6 years. Would have kept it forever, it was subclavian but so small it did not show. My MO, who requested it stay for two years after completion of Herceptin, as that is the most common recurrence window, finally said it should be removed.

coachvicky

Here is my port. I am betting I will never need it again.

Vicky

VVV

HapB it is irresponsible to share percentages without a source that states them. Show your proof of 15% or don't make the claim. People are going to take your number as fact when you probably just made it up. Saying something like that can cause someone to refuse taxotere or refuse treatment. Is that what you're trying to convince people of?

LTWJ

I had taxotere in my chemo, my first oncologist told us that the taxol regimen was old and not as effective so it isn't used much anymore ( imagine my dismay when I read on tne boards I joined tnat 90% of people were getting taxol 😣), but yes I was told about tne SE of maybe losing my hair permanently. I was also told tnat untreated this cancer would kill me. I have 3 good friendswho have had alopicia since they were teenagers, because of some immune disorder, and all live completely normal lives. Millions of men live without hair and do just fine.

My SE that I hate the most and was not warned about is my hearing loss. I have lost about 30% but they say like the neuropathy in my numb feet, just give it time. BTW I fired my oncologist as soon as I was done with my 6 rounds.

My hair is slow growing and thin on top but thick on the sides. Hopefully it will be long enough soon to cover the thinner areas.

VVV

None of these are sources that even state what you're claiming and you're specifically searching trying to find ones that back up your claims.

First we'll address this link: http://injury.findlaw.com/product-liability/taxotere-hair-loss-lawsuits.html

1. Not a reliable website source

2.You didn't read the study you linked because the aheadofourtime one (that's also linked at findlaw) says:

"The relatively recent description of this side- effect could be linked to the fairly recent validation of taxane- based adjuvant breast cancer therapy, which was introduced in France in 2005. The conjunction of taxane-based treatment with a population having a good prognosis, thereby allowing for a long follow-up without chemotherapy, could perhaps explain this new cutaneous side-effect. In addition, the relatively low incidence of this side-effect may have delayed its description. Approximately 1000 patients affected by early breast cancer were treated with this type of sequential, anthracycline- and taxane-based adjuvant or neoadjuvant chemotherapy in our institution during the accrual period. It could thus be roughly estimated that the incidence of this side- effect in this patient population is ∼2%. However, biases like losses to follow-up or underreporting of the side-effect are possible."

3. Link they provide to 2014 study is broken and therefore invalid as a source.

4. New England Journal of medicine they claim only lists rates of alopecia DURING treatment.

Your other link is only showing that taxotere/docetaxol can cause hair loss. We know that. I asked for facts to back up your 15%. You're further being irresponsible by acting like you have the studies to back up that number because none of these show that and not everyone is going to follow all the links to realize that your information is false.

The link where you say incidence is not tracked. It specifically says:

"Alopecia persisting into the follow-up period after the end of chemotherapy was reported in 687 TAC patients and 645 FAC patients. At the end of the follow-up period, alopecia was observed to be on-going in 29 TAC patients (4.2%) and 16 FAC patients (2.4%)."

VVV

You can not and have not shown anyone estimates 10-15%. The links are saying numbers other than what you claim. You are lying and misleading people. None of this is a personal attack. I merely want you to stop sharing false information in a thread where people come to find information. People will treat what you say as fact and it's not fair to those people to let you lie to them.