TRIPLE POSITIVE GROUP

SpecialK

moody - I am reluctant to take a position on an after-the-fact Mammaprint. The main reason for the the test is a non-issue at this point on the treatment continuum for most of us. Mammaprint does provide subtype info, and recurrence estimate info (mine did not include the recurrence estimate in 2010), but it is an expensive test and if not done prior for determining treatment decisions, such as the addition of Perjeta or a particular chemo regimen, I’m not sure if enough value would be added by doing it at this point. It would be an individual decision based on how you feel any new info would inform future decision making and your state of mind moving forward.

Lita19901

Hap, Specialk, et.al. I basically begged and pleaded with my MO at JH for a Mammaprint because of my situation, although what I really wanted was the Blueprint results, but to no avail. Perhaps I didn't try hard enough, but I felt as if I had pulled out all the stops. They said they would not order it because it would not change what would have been my treatment plan.

Blah

KimCee

Binniebin, that's just me. I am supposed to have the Herceptin over 30 minutes but I tell them to do it over 60 minutes. I can not remember the reason but I read something somewhere that made me do it over 60 minutes. Crazy right? Lol.

moodyblues

Thanks for the insight SpecialK, as always I appreciate it.

SpecialK

moody - happy to help

binniebin- Genentech dosing instructions allow for a 90 min first infusion, then subsequent Herceptin infusions can be done anywhere from 30-90 minutes. All of my Herceptin infusions that accompanied chemo were infused over 90 mins, no issues. My first Herceptin only infusion was done over 30 mins and I had intractable hip and leg pain for about a week. Slowed the subsequent infusions to 90 mins, no more pain. Anecdotal at best, but there are enough of usthat this holds true for that makes it worth consideration if you experience discomfort following infusion. Also, on pg 912 of this topic, in several posts, the OP Tonlee offers her thoughts on Herceptin infusion speed and heart damage.

coachvicky

Moody, I am with SpecialK on the after-the-fact about the Mammaprint. It is expensive and a personal decision.

For me, my MO's percentage was 80% to 85% for non-recurrence. That was not high enough (for me) to do five years of Arimidex. That probably does not make sense but that is how I saw it. I remember telling the Nurse Practitioner this and she was surprised that I considered not taking Arimidex. I reminded her that it was my body and my life. Everything I did to my body was a deliberate choice one step at a time (surgery, then 6 rounds of chemo, hysterectomy, continue with Herceptin ...).

I am also eligible for early Social Security and with his numbers, I would have started SS early. When the Mammaprint came back higher, I was willing to take the Arimidex and delay SS.

Vicky

Cherry-sw

Welcome all new members, even though it makes me sad every time I see a new introduction, this diagnosis is so unfair. I am reading all the posts but do not have so much time to post every day like I used to, have to get myself moving in order to lose my 10 extra kg I gained while on chemo. I am 2,5 weeks PFC and yesterday I tried to run, made it to approx 800 m until I got a call from a friend I had to take. I was talking to her and wondering for myself whether I actually was able to run even longer. But I have to admit it still was very hard, I have not been running for over six months.

LaughingGull, I am in Sweden and did extra chemo for my tumor size and stage just to have the peace of mind. When I was comparing all the treatments I red our national guidelines that are based on the latest scientific results where it was stated that in terms of survival weekly Taxol and Taxotere spaced three weeks apart are equal meanwhile weekly Taxol is being less toxic. But Taxotere is often given with Carboplatin and in that case you have another drug added to your treatment. If you have smaller tumor weekly Taxol is the baseline treatment for you. I have to admit reading so many posts about doctors being late sometimes for hours just appalls me since it simply cannot happen here, this country is so punctual. If you are late you have to call and tell people you will be late, no one will wait longer than thirty minutes, it is considered to be so disrespectful. If it ever happens again just go to another doctor, you have enough on your plate so a crappy doctor make you feel even worth.

Tres, that was a lot of hair in a year and what a fabulous color you have, do you dye it or is it your own? I had similar color but I had to dye my hair because it is mostly grey around my face. Very brave of all of you to post pictures, I wouldn't dare though, on the other hand I have no much hair growth to show yet, and what is coming is mostly white. I do have some eyebrows and lashes now, they make me look more or less normal when I wear my wig and my hat.

A question: do you dye your hair and what dye do you/your hairdresser use? I have a lot of grey hair straws since I was thirty, it runs in the family from both sides. There is no way I will go without dying my hair and those organic brands I tried before my diagnosis did not cover my greys, any suggestion anyone?

Regarding vaginal dryness, I have been given Repadina to try by my clinic, it is natriumhyaluronat 10 mg, and prescribed Replens, which is basically a water-based lubricant. This is what they offer here in Europe. I did not try any of them yet, I have almost zero sexual desire and below zero sexual appeal, I would not want to have anything to do with myself when I look into the mirror so why bother. I do not know, maybe it will change when my running gets me back to my initial 65 kg. I am actually willing to try to run my usual track today, doesn't matter if I will not be able to run 3 km, at least I am trying.

Even though I am done with chemo I still feel so blue, because I still have Herceptin, rads and Tamoxifen and no clue whether the treatments worked or not.

tld2017

I met with my surgeon today to get the results from my sentinel node biopsy and lumpectomy. I am still considered Stage 1, Grade 1, estrogen and progesterone +, and HER2+. The doctor said again how highly unusual this is. Port placement will be in March. I will have 18 weeks of chemo, followed by 6 weeks of radiation, 5 days a week, with one year of Herceptin given through the port. The mass was 1.3 cms. I have to figure out how to put all of this info into the little block below my posts. She removed two lymph nodes during surgery and both came back cancer-free. Also, the tumor had clean margins. I am so glad that I have found this forum!

Tresjoli2

thanks cherry! I throw a few highlight in once or twice a year, but mostly my color. I loved my hair before I got sick. It was thick and long and fabulous. Losing it was extremely painful, so I'm happy to be getting it back...not quite what it was before chemo...but moving in the right direction. This was the night before my lumpectomy. I took the kids to friendlys for ice cream. That is the girl I miss!

Cherry-sw

Tres, you boy is so cute) On your latest picture you posted before you look just like the night before your lumpectomy to me, but I know that on inside we will never be the same. I believe I am past the worst shock for now and with the help of my anti-depressives I realized that life had a turn when it never be the same anymore and just like you I miss my pre-cancer self so badly but there is nothing I can do to get it back and just everyone else here I am moving on. But I have to admit that losing my hair was so dramatic, if I knew it I had tried cold capping. I am gulping every time I see myself in the mirror. I hope therapy is working for your little girl, just recalling you posted about her being afraid of you getting ill again. Hugs,Cherry

Cherry-sw

tld2017, it looks that your surgery went well and you have a plan. Did they also tell you what KI67% your tumor had and whether there was LVI? I am just curious what KI67 grade 1tumor can have since being Her2 pos usually means highly developed cells that divide very rapidly.

Now when you have your treatment plan ready, how do you feel? Usually it can bring some relief knowing that you are doing something about this bc. Will you be doing weekly Taxol or even AC? Or is it Taxotere and Carboplatin? Both are very effective. Monthly chemo group are starting every month here on BCO, our August chemo group moved to FB and we all grew very fond of each other, these bords are truly a life saver.

wabals

Cherry sw I am triple pos grade 2 and my ki67 is 10 which is pretty low

Cherry-sw

wabals, it is pretty low even for grade 2 and for being Her2+ is extremly low. Mine was 50%

shelabela

hi Ladies, so i had my first Lipo and fat grafting. Oh my the pain. Anyone else have this done?

SpecialK

shelabela- yup, multiple times - each day it gets better. After a week or so it felt like I went too hard at the gym or did too many sit-ups I recommend wearing compression in the donor sites, it actually felt better for me.

shelabela

specialK.-- they have me in a compression wrap, around that area and one around where they did the grafting. I have 2 of them. Told me to wear it for 6 weeks. How long did you

wabals

Cherry sw Maybe because I was 72 at diagnosis. I think it gets less aggressive with age

SpecialK

shelabela - I did not compress the graft area as my PS did not want the new fat to be squeezed, he felt that this might compromise fat survivability. I did not have a wrap for compression at the donor site, I had a Spanx-like highwaisted panty with a snap crotch. I wore it for 8 weeks, no gym - only walking and a lifting restriction for the first two weeks. Compression at the donor site is important because the tunnels made by the lipo cannula can fill with fluid and become firm or cause a seroma, just like after mastectomy/lumpectomy.

tld2017

Cherry-sw, I don't know any specifics. I have the pathology report but I do not see anything about KI67. What is LVI? I feel so completely unprepared. Is Taxol the chemo? The surgeon said I would have chemo every 3 weeks for 18 weeks. I'm not sure what AC, Taxotere or Carboplatin are.... Wow, this is so much and I feel painfully ignorant. I am so sorry that I can't answer your questions because I feel like I should be able to. I know that I will learn all of this in the coming weeks and I will update as I find out.

shelabela

i guess the one around the grafting is not really compression as a bra to form the new fat. If that makes sense

Blownaway

HapB - I've doing your suggestion (taking b/p during hot flashes. It seems that my b/p drops, while my pulse accelerates. My last was 112/57 with a pulse of 87. This was at rest. Interesting.

deni1661

Hello ladies- I am slowly catching up to all the posts since my shoulder surgery Wednesday.

Coach- thanks for the update on your 2nd opinion. Sounds like you had a great experience. I’m happy you found peace of mind.

Tresjoli- awesome pictures! You look great! Thanks so much for posting your pictures, it’s comforting to know things really do get better

To all those who are new, welcome to our group. Sorry you have to be here but you will find lots of support, inspiration, and helpful information.

Hap - thanks for the great articles! I like your suggestion to check BP when having hot flashes. I get the same symptoms as some of the other ladies, I get super hot my heart races and I feel like I’m going to faint. Never thought to check my blood pressure I will definitely do that next time.

Shelabela- I wore the compression garments for 6 weeks. I think they helped with avoiding the fat necrosis.

Hugs to all

kae_md99

deni,

me too, i get really hot wit fast heartbeat and feel faint! i was given celexa to help with it plus for the anxiety too. i will see how t goes.its very scary when that happens.

LaughingGull

Hi ladies,

Cherry in Sweden: thanks for your message.

I have been a bit late to respond because midweek this week (and this was a week after my first Taxotere-Herceptin-Perjeta combo), I woke up with a fever, went to the dr to get white cell counts, and landed in the hospital. No idea what caused the fever in the first place (I have a sore throat but that is it); I have been receiving a ton of antibiotics. The IV antibiotics have not worked at all, with the fever going up, and the white cells going down, on my first two days in the hospital. Then they started me on Neupogen last night, and I am already feeling soooo much better. Hopefully I will be able to get out of here within the next couple of days.

Which takes me to Neulasta. The day after each of my 4 AC infusions, I had a Neulasta shot. Never had a problem with it, never had any infections or even a cold while on AC. Last week, when they started me on Taxotere-Herceptin-Perjeta, to my surprise (the MO didnt mention this to me) I didnt get the Neulasta shot, because, according to the nurse, the low white cell counts is not a common side effect of Taxotere. Well, one week later I am in the hospital and the only thing that seems to be having any effect is Neupogen, which is similar to Neulasta.

My MO is out of town, and other MOs have been visiting me here in the hospital, as well as the regular nurse practitioner who works with my MO. My only question these past few days has been whether, next time, they will give me the freaking Neulasta shot and spare me another scare and hospitalization. The MOs said yes that makes sense, and that they will talk to my MO about it, but the NP who works with my MO keeps saying, over and over, that Neulasta is never given with this Taxotere regime, and that I probably wont get it next time, and that it is more likely that I get a reduced Taxotere dosage rather than a Neulasta shot. And she keeps saying that I am having this not because of the skipped Neulasta shot, but just because it's "something that I caught around" -never mind that I never had a fever like this in the 12 years prior.

Someone please talk me out of punching this woman in the face next time I see her. What is the rationale of not giving me the Neulasta shot and prevent another misery episode like the one I am going through? Am I missing something? Are there any long term side effects or drawbacks of Neulasta that I dont know of?

Thanks

LaughingGull

kae_md99

i had taxotere and i had neupogen the entire time....

SpecialK

laughinggull - I had 6 TCH and 6 Neulasta injections. It is my MO's policy to combat the very thing that happened to you. The NP is bullshitting you - it is common to follow Taxotere with Neulasta, less so with Taxol. You have a neutropenic fever which is fixed with GM-CSF drugs like Neulasta and Neupogen. You had to get Neupogen because it is less than 14 days before your next chemo. Neulasta can only be given if there is more than 14 days before the next dose - that is why they do it so quickly after chemo - usually at the 24 hour point. Your NP is also discounting the damage the AC did to your white cells - all of this is cumulative. Stand your ground on getting the Neulasta and no dosage reduction. If she gives you any crap I will come punch her in the face, lol!

LaughingGull

Thanks Kae and SpecialK

I will stand my ground. I was thinking of scheduling an appointment with my oncologist as soon as he is back, to go over the plan for the next chemo, and kind of do a postmortem analysis of this episode. This hospitalization comes at a high cost to me. I lost an entire week of work; my children freaked out; my parents canceled a trip to be with me instead; and my last three days I have been utterly miserable here in the hospital -and I still have a couple more days here unfortunately. And in the end nothing at all worked, other than getting Neupogen.

LaughingGull

coachvicky

LaughingG.

These words by TonLee who started this forum kept me in control.

"2. THINGS TO REMEMBER (every step of the way).

1. This person works for you. Period.

2. This isn't a car, it is YOUR BODY. You will live with the consequences long after the tech/Onc/Nurse etc go home to their families and forget about you. You have final say in what happens and what does not happen to it. Period.

3. Advocate for your body like you would a child's, a husband's, a best friend's.

4. No matter what the Dr/nurse/tech/whoever says, they are NOT the boss of you!"

I like to say when I get a BS comment, "When you took chemo how often did you take the Neulasta injection?" Change to the circumstance but that should shut up the NP! This is a favorite I use from TonLee: "7. "Can you give me the research to back that up?""

replacement/etc. Insist on it.

Here are some of TonLee's "go to" phrases:

1. "I'm not comfortable with this. Would you mind finding someone else to do it?"

2. "I understand your points. I hear you. But, this is what I've decided. Are you willing to do it?" (Be ready to move on if the professional says no.)

3. "This is not working for me. I'd like to speak with your supervisor."

4. "This is unacceptable. I'm not going to go any further until (insert what you want here)."

5. "I'd like to see the patient advocate on staff."

6. "Look, I appreciate that you tried, but this is not working. I'd like to see someone else."

Best wishes. Stand your ground.

Vicky

LaughingGull

coachvicky thanks for all this food for thought. I am thinking about it. And thanks HapB too.

PeachyJeanne

LaughingGull So sorry to hear you ended up in the hospital! I got a Neulasta shot after each of my 4 AC infusions. That was followed by 4 doses of Taxol with a Neulasta shot after the second and fourth. I did experience a fever with no apparent cause. Eventually it was determined I had pneumonitis (inflammation in the lungs) that was from a bacterial infection. Once I got antibiotics, I was fever free in a day. It just took them a week to get the diagnosis. Nothing showed up on 2 separate chest xrays. It took a CT scan. I hope you get to go home soon and feel better.

I just had my first CMF/Herceptin/Perjeta infusion on Thursday. I did not get a Neulasta shot. I was told this combo does not normally drop the white blood cell counts like the AC does. I'm feeling okay so far, but definitely going to keep on top of my temperature.