TRIPLE POSITIVE GROUP

ElaineTherese

HapB,

Wow! what an ordeal. Yes, sometimes we just should feel doubly-blessed. Last night, a tornado hit a concert my daughter was attending. No injuries, just damage to the roof on the building, thank God.

Glasgowgirl -- Ugh about the lack of healing! How frustrating for you. Yes, just vent as much as you want. You, too, Cherry! Better to just let it all out to some sympathetic ears.

coachvicky, triple positive is truly a marathon that tries the patience and the goodwill of all of us. I sometimes think it helps if you break it down into segments, mentally. "Radiation done! Got that checked off the list."

My best to all!

marieann1020

hi ,I hope someone can answer this question

I take anastrazole ( Arimedex ) daily

Can i take antiacid ?

I heard that antiacid ( zantac )

Will reduce the absorption of the Arimedex

Any feedback would be greatly appreciated

deni1661

Glasgow - so sorry to hear your wound hasn't healed yet. That sounds like a terrible ordeal. 7 months is a long time and I can only imagine how frustrating this must be.

As the others said before me don't ever feel like you're complaining. This is the best place to share what you're going through. I find this group to be the most comforting resource I have since most people in my world cannot relate to what I'm feeling. We're in this together for the long haul.

Sending prayers that things get much better for you soon. Hugs

PauletteK

HapB - thanks God you are fine! Yes we need to live life fully everyday even under chemo.

Suburbs

HapB, haut les coeurs!

Glascowgirll99, what an ordeal! Please feel free to rant lots and often. Very frustrating for you. Sending positive healing thoughts. Please keep up posted.

GlasgowGirl99

Thank you all for your words of encouragement ☺️☺️. Good to know I can come here and let all my frustrations out without being judged. My 2 sisters and Mum are heading off tomorrow morning while I am going to the hospital to have my wound checked again. I am hoping they may give me the go ahead to go to Glasgow on Tuesday but at the same time want to be close to my own oncology team in case things worsen 😐.

So glad to hear you are ok HapB.

Cherry - we will get those better days very soon 😊

Hugs to each and every one of you dear ladies 🤗🤗

LA1986

Good evening,

Happy Sunday night! I just started chemo this week and wondered if anyone who has taken L Glutamine during TCH chemo can share what their dosage was if they took it everyday during treatment or just a few days before and after? Appreciate it, thank you very much. My oncologist is on board but I am curious about the protocols. I have seen recommendations for 4 days afterwards to the entire course of treatment

T-Sue

Thought you all would get a kick out of this. My son and I tested out Halloween costumes for a "Boo at the Zoo" event today. My shirt says "It was never a dress" and I have a red cape and my headscarf to compliment it. 😀

PatinMN

LA1986 - I took l-glutamine four days a week on weekly taxol. 15 grams in the morning and 15 grams in the evening. 15 grams is about a heaping tablespoon. I also took 100 mg of B6. It seemed to work for me - or maybe I wouldn't have gotten bad neuropathy anyway. Who knows? The chemo nurse suggested waiting until I had symptoms before starting since neuropathy doesn't hit everyone. I ended up with just some mild tingling.

T-Sue

Thank you HapB! The "It was Never a Dress" campaign was started by a breast cancer survivor to bring awareness to the hidden powers of women. It's not just a rah-rah thing, I believe that she promotes girls in coding and engineering classes and careers. You can read more about it here:

https://itwasneveradress.com/about/

SpecialK

hap - glad you're ok, that had to be scary!

la1986 - I had 6 TCH and took both L-Glutamine and B6. I took 30g of L-Glutamine in 3 daily servings of 10g each. I dissolved it in a cold, non-acidic drink - heat and acid can denature the powder. It is pretty tasteless so you can disguise it easily, but don't mix it with pudding or applesauce and try to eat it. Trust me on this, lol! I took a 100mg capsule of B6. I took both of these supplements throughout chemo.

CCNC

Question for everyone on TCHP or Herceptin, how often is your oncologist checking your heart throughout the year(s) of treatment? How many echocardiograms have your had during your treatment?

Thank you

coachvicky

CCNC

My heart had a baseline and checked two other times. My scores increased each time so I did not have a final one.

Coach Vicky

Cherry-sw

HapB, this accident sounds horrible indeed, you were luck

Cherry-sw

T-Sue, love the picture and the spirit, your boy looks just like you, very sweet. How old is he, if I may ask? Those who are posting pictures actually look good, I really look bad, completely unrecognizable to myself. Yesterday I cut what was left of my hair, it was not much I kind of looked like Gollum but some hair stuck out when I had my hat on. Now it is gone and I do look hideous, so sick and aged like 10 years

Cherry

Cherry-sw

Hi everybody, I got another question. Prior chemo did your oncologist asked you about exposure to any kind of radioactivity?

T-Sue

CCNC, I also had a baseline eccocardiogram before herceptin. My MO requests an ecco every three months while on herceptin for a year. 

Cherry, thanks! My son is 9yo. I had a Gollum look for awhile too - I think the buzz cut looked better. Getting some colorful scarves and new, bright lipstick helped me look better and feel better. Also, I don't recall my doctor's asking about radiation exposure.

Cherry-sw

T-Sue, this is definitly your collor.

I also wonder if anyone had been exposed to any radiation in their teens

Cherry-sw

I received the head cover from BestWishes and even though it is a nice color and fine quality, it screams chemo all over me when I try it on, I guess I will just stick to the hats, it is already cold here so. The card was very moving though, signed by many people, I was very grateful

deni1661

T-Sue, what a lovely picture of you and your son. Absolutely precious! He looks just like you too. Thanks for sharing :-)

GlasgowGirl99

T-Sue. I love the photo of you and your gorgeous little boy 😃😃. You look amazing!!

Cherry - our lives have changed so much since our diagnosis. Some days I find it so hard when I look in the mirror and don’t see the “me” that I remember from before. My hair is starting to grow again, my chemo and radium are finished and my herceptin will be finishing next March. We will get through this. And we will start feeling better about ourselves. I’m looking forward to having a “chic” new look when I return to work in the next 6 weeks or so (have never been “chic” in my life but I live in hope 😂😂)!!

Sarah xxxx

Cherry-sw

GlasgowGirl, I always loved the chic looks and tried to pull it some time, this is not to me to decide, but sometimes I did well. I have shaved my head yesterday. I vut my Gollum hair short but it looked awful and I slowly and gently shaved it. On the top of my had there is a fluff that would go with the razor, like a fluff on the a baby duck, I believe this is my hair start growing again. I am not sure I will keep them if I proceed with EC, my oncologist and I are considering to switch two last Taxol to 3 DD EC because you and I, we get the same treatment but my tumor was invasive, had LVI, hight Ki67 and was a borderline for this treatment. I do not want to do anthracycline but I feel I need to throw everything.

Today I am going to my an appointment with my psychiatrist and I wear my wig for the first time with a hat on it, the wig has long hair. And I felt so bad looking at my self that I finely decided to put some make-up on, still looking sick but at least somewhat tended.

You should go for the chic look and take care of yourself, if now is not a time when then?

I hope you can still join your mom and sister on this vacation in Glasgow. I would like to go there some time too. Where in Ireland are you? I have a friend in Galway.

Cherry

moodyblues

Cherry-sw  I was living in Pennsylvania when the accident at Three Mile Island occurred.  I remember when it occurred, my father and I and a co-worker were loading a truck not too far from where it happened.  I was 16 and we just kept on working on the dock...I never thought of it much until BC occurred and the thought seeped in.  I also had a spontaneous pneumothorax in 1989 and had daily chest x-rays for 20 days (and then a few after that sx) and that has been on my mind for years.  I always wondered how all of those x-rays affected my health.  Who knows why it happened?

CCNC

Thanks for the responses. I had a baseline and then a check in June because my blood pressure kept dropping. I should finish Herceptin in December, but am just having some odd side effects recently and was just wondering what the protocol was for others.

Cherry-sw

moodyblues, I was 150 km far from Chernobyl during the first two weeks after explosion before our parents managed to drive me and my brother to another city to send us to our grand parents who lived far away. We came back after 15 months and then after after three years I moved for good. My oncologist wanted another multidisciplinary conference to discuss whether I can take an anthracycline or not because of the amount of radiation I have received during those first two weeks. There is no higher incidence of bc in that area though, since there was a lot of radioactive jod people have problems with thyroids, I was checking my values regularly since my mom has developed hypothyreos back in 90-es. My BS did not think that being exposed did contribute to my bc. But I do wonder of course.

Cherry

moodyblues

What is the name of the test that tells you if your children are at risk for developing BC.  My daughter's doctor told her that I have to take the test (that her insurance would not pay for it).

What is the name of the test that tells you the % risk of you getting BC.  I am still thinking about having the healthy breast removed (they say it is healthy) but, we all know if we have breasts we are at risk for BC in the other breast as well.  

I met a woman who had her implant placed immediately after the mastectomy was performed (no tissue expander), I was wanting to do the same thing.  My question is, when you have a prophylactic mastectomy, I assume that they test the breast tissue for cancer.  How long does it take to do pathology on all of the tissue?  I would think it would take a good bit of time to check all of the tissue right?

Thanks for your answers or thoughts on this!

Melanie

Suburbs

moodyblues, there are several types of panels. BRCA1 and BRCA2 are typically the genes referenced. Normally, one would have genetic counseling before the blood draw. At that point, the panels are reviewed and discussed in light of your history. Then a decision is made about how extensive the testing could be.

Direct to implant surgery might only be performed if there is little chance that radiation is required. Otherwise, most plastic surgeons would wait.

Typically, there is preliminary pathology executed during surgery and then complete pathology performed after surgery. The final pathology usually takes a week to two weeks.

debiann

moody blues, do you have a family history of cancer? Insurance may not pay for the test for you either, it depends in your family history. My insurance covered a genetic counseling appointment where they take an extensive family history. They determined my cancer was not likely related to genetics so genetic testing would not be covered.

If taking your healthy breast would make you feel better than that is all that matters. Doctors and family can advise, but only you know what is right for you.

Cherry-sw

HapB, as I said the incidence of bc in that area is not much higher than in other places in Europe, but we do not know how it affects one particular individual. I was overthinking of what particular could cause my bc, pretty pointless anyway, I cannot do anything about my past.

coachvicky

Moody Blues (Melanie),

Go to the forum breast implants 101 by WhippetMom. Tell her what you are thinking and get her take on immediate implants. Frankly, I would not do it as I am unsure you will get the "final" result you want.

My pathology reports came back quickly (next day or two). My Mammaprint took a couple of weeks.

Until your MO fights for the tests you won't know what will and will not be paid for. My MO did fight for all my tests.

As for your decision to have the double mastectomy, as Debiann wrote, that is your call girlfriend. I believe we each must do what it takes to get cancer in our rear view mirror.

I want you to go into this decision with eyes wide open. I am lucky. 15 months post mastectomies I have sensation and very little numbnes restricted just to a limited side of each breast. You will want to make pictures of your breasts. Print those pictures and take them with a pen to your surgeons. Have them draw EXACTLY where they will cut.

Healing takes about 6 weeks of very limited mobility. You will not be physically able to open your refrigerator. (Well, you can open it but it will hurt and you may drain for a longer time.) The more you limit yourself physically the quicker your drains get out. Drain tubes are a pain. Sponge baths were part of our normal routine for weeks it seemed.

Emotionally I got to the place where I hated my breasts. The double mastectomies was a somewhat easy decision for me and one I have not regretted. But that is me.

Let me know if there is anything else I can share with you.

Best wishes as you go forward. That is what is important to remember ... You are going forward.

Vicky