TRIPLE POSITIVE GROUP

lago

debiann I got them on Exemestane (including anxiety). really freaky when you've never had metal health issues before

Kate I was close to the chest wall and in a grey area. Big tumor (over 5cm which usually does get rads) and no nodes. My rad onc gave me a pass but I was 49 at age of diagnosis and not multiple tumors. I would ask about heart/lung and rib toxicity. I'm sure your age and multiple tumor is playing a huge part in this even though I had a larger tumor. Otherwise we did the similar treatment.

Nothing wrong with getting a 2nd or 3rd opinion on this but the tumor board should help

ashla

Kate

I had tomotherapy rads which I was able to do face down. I chose that in order to hopefully avoid nicking my heart since my tumor was left Breast.It may not be advantageous if you are targeting the chest wall. Worth asking about though.

The rads were really an issue of time commitment... I had 34 treatment. 27/7. I had no side effects during the treatment other than extreme exhaustion toward the end. Most people would nap lying face down in a darkened room with beautiful music and a cozy blanket.

But for me...Rads were , in fact, personally my most difficult treatment. I am definitely an outlier here and the fact that I chose tomotherapy was the reason. It was psychological. I am claustrophobic and face down was a struggle

Other than that...no problem during or after so far as a result of rads.

Good luck with your decision.

ElaineTherese

Kate,

Rads were boring and somewhat dehumanizing. Every day, I climbed onto a table and cheerful, apologetic techs pushed and prodded my body into the proper position, like a piece of meat. If my hip was out of position by so much as a centimeter. a tech would shove it to the proper position. It was boring because there's no sense of community in rads. At least in chemo, we all sat around under our warm blankets, sipping water, soup, apple juice or whatever. My chemo buddy and I would sit and gossip about the people in the department and our respective families. It was cozy.

By the way, I didn't have many SEs from rads; my boob just turned pink and sensitive. I went without a bra for the last four weeks, and a cop yelled at me for tucking my seat belt under my armpit. And, that was all.

Best wishes, making a decision!

debiann

Anyone else read this and what are your thoughts?

Denosumab Benefits Postmenopausal Breast Cancer Patients

News | December 09, 2015 | SABCS 2015, Breast CancerBy Anna Azvolinsky, PhD Michael Gnant, MD

The addition of the bone-targeting drug denosumab to adjuvant hormonal therapy in postmenopausal breast cancer patients improves disease-free survival (DFS), reducing the risk of disease recurrence by 18% compared with placebo, according to the results of the Austrian Breast and Colorectal Cancer Study Group (ABCSG)-18 trial.

The results (abstract S2-02) were presented at the 2015 San Antonio Breast Cancer Symposium (SABCS), held December 8–12 in San Antonio, Texas.

"This is a very safe treatment and my clinical conclusion is that denosumab reduces the risk of disease recurrence or death, and this benefit is similar to what bisphosphonates can do and comes in addition to highly significantly reducing clinical fractures," said study author and presenter Michael Gnant, MD, professor of surgery at the Medical University of Vienna in Austria, during a press conference. "I believe that we should offer this treatment to postmenopausal breast cancer patients on adjuvant aromatase inhibitors."

Denosumab is a first-in-class antibody approved by the US Food and Drug Administration (FDA) in 2010 for the prevention of skeletal-related events (SREs) in patients with solid tumors and bone metastases. The antibody binds to the RANK ligand on osteoclasts in bone tissue, preventing bone destruction. Previously, bisphosphonates such as zoledronic acid were the major option for prevention of SREs.

In June, analysis of the primary endpoint of the ABCSG-18 study demonstrated that adjuvant denosumab given twice a year can cut treatment-induced fractures in half in this group of breast cancer patients. The trial randomized 3,425 patients with early-stage hormone receptor–positive disease to 60-mg subcutaneous injections of denosumab every 6 months, or to placebo.

After a median follow-up of 4 years, the current analysis of secondary endpoints showed a statistically significant improvement in DFS (hazard ratio [HR], 0.816; P = .051) among patients taking denosumab compared with those in the placebo group.

"The analysis indicates that adjuvant denosumab actually improves DFS in the intent-to-treat population," said Dr. Gnant. "This is a borderline statistical significance but sensitivity analysis shows that this may be a conservative estimate."

An additional exploratory subgroup analysis suggests that denosumab may particularly benefit those women with tumors larger than 2 cm (HR, 0.66; P = .016), those with ductal breast cancer histology (HR, 0.79; P = .048), and those with tumors positive for both the estrogen and progesterone receptors (HR, 0.75; P = .013).

The addition of denosumab treatment was safe, with no measurable differences in adverse events between the denosumab- and placebo-treated patients, and no confirmed cases of osteonecrosis of the jaw.

"If I see a new patient next week, I would start her on these injections [with denosumab] for 3 years," said Gnant.

- See more at: http://www.cancernetwork.com/sabcs-2015/denosumab-...

wabals

I actually enjoyed my radiation experience which sounds weird but is true. My therapists were awesome. I never felt like a piece of meat. I had no side effects other than swelling and redness and folliculitis, which is an inflammation of hair follicles which is itchy. Tomorrow is my last treatment. I have met some really great people, both men and women. We had some very fun discussions in the waiting area, most not about cancer. I had feared it and it turned out to be all good

Anonymous

Debiann-I sent myself into what my doc called panic disorder when diagnosed. Couldn't sleep, food tasted awful, heart racing, was losing weight like crazy, my low bp was 175. Put me n Cymbalta and withing 48 hours was 100 percent better. Ten started on Tamoxifen and couldn't take it to to drug interaction so weaned off. Had HORRENDOUS hot flashes on tamoxifen. Some would be so bad I actually thought I was starting to have a panic attack when I could feel one coming on. Tried Effexor to help with hot flashes. Worked for a couple months then they were back. So...I weaned off that. 18 months ago, I was switched to Arimidex after a weird pap smear. Joint pain started pretty quickly and was really painful. Doc said no reason I coudn't try cymbalta again to see if it would help, as that is a benefit to that drug, and voila! Joint pain went mostly away. I figure the anti-anxiety part can't hurt either, as I am one that constantly wonders what is going on inside my body now. I hate the unknown.

Sammy-I dressed cute every time I went, even if it was cute sweats. Made me feel healthier and more positive. I had taxol weekly for 12 weeks with herceptin. SE's were reasonable. On infusion day, with the steroids, I was a woman on a mission...Left the office, ran errands, worked out like crazy, got all kinds of stuff done...awake all night playing online. started to get tired about mid day of day two. Wiped out day 3 and 4, day five started to feel better and 6 and 7 were good.

My problem was I had what ultimately turned out to be a pseudomona infection in the foob area that they were trying to treat throughout all this with IV antibiotics, oral abx, etc. However, I didn't run a fever much and it was really low if I did. When finally diagnosed with the type of infection, my PS and ONC were completely freaked out as they said I should have felt much worse than I did. ONC said he would have to keep a close eye on me.

geewhiz

I hadn't hearda bout that DebiAnn...thanks for the link! I will ask my onc next time what his opinion is...

(Lago,,,I love you avatar..you are so pretty!)

ashla

Debiann

Yes...I've been following the story . Gonna talk to my MO next week. We had discussed Prolia previously and he agreed that should my Dexa results show a decline , we would do it. After this report I may request it now.

There are several ladies here who are getting the shots and their bone density has improved but this takes it to another level.

If insurance covers it & the side effects are not too onerous, kinda like a no brainer, right? Am I missing something?

Think it's Lago & SpeciaK K who get the shots....How are the side effects?

Creativevintage

I had heard about the Denosumab. In fact, my MO is switching me from Zometa (prescribed by a physician who was filling in for him one day) to Prolia. He is now prescribing Prolia to all his patients who are on AI's. I will get my first injection in May. He is in San Antonio this week attending this conference and I can't wait to talk to him when he returns. I had that other doctor again yesterday and she again tried to change my treatment plan. I think I am going to request that I see a resident or ARNP rather than this physician when my MO is away. I refused to go along with her change. My MO wants to wait until after I finish rads to start the Arimidex. She wanted me to start it today. She also pushed the Zometa on me the last time I saw her. She did not give me anytime to even think about it, just ordered it and I got it with my Herceptin. My MO was not pleased when he found out about it. I am a little suprised that I had to see her again!

SpecialK

Yes, I am On Prolia and just read that article. I am even more happy to have this drug! I have experienced zero side effects and after 4 injections, 18 months after starting, bone density was normal.

Had expanderplaced yesterday - all is going well so far - very excited my new PS was able to do this and is optimistic

ElaineTherese

Good news, Special K! Hopefully, your marathon reconstruction efforts are nearing their end.

lago

I've had 3 Prolia shots so far. No side effects, none, zero, zilch. My MD warned that the first one can have more intense side effects but I had none.

ashla

Great news Special K!

Wishing you a speedy recovery !

TTfan

I had one Prolia shot so far. I had quite mild fluish symptoms - chills, body ache, fatigue - the evening of the shot, gone by morning. I also had Herceptin at the same time though, which is also a monoclonal antibody, so maybe the symptoms were from having both at once. We'll see when the next one comes in the spring and I'm off Herceptin.

Just FYI for those of you with hot flashes and/or joint pain on an AI - I was on the verge of switching AIs or going to tamoxifen because I was so miserable when I started acupuncture. Within two or three sessions I had a pretty remarkable improvement in both. I have those crazy making hot flashes that feel more like a panic attack than a hot flash when they start. Those symptoms are still there, but mostly far less intense now. The heat part is a little better too. The morning joint stiffness hasn't changed, but the actual joint pain is a lot better now. Could be the acupuncture or the turmeric I added at about the same time. Part of the relief may be the gabapentin as well. I was already on it without it seeming to help much until I got to pretty high doses. I'm now on 800 mg three times a day and notice immediately if I forget that midday dose! Unfortunately none of this has improved the residual neuropathy from the Taxol. It's actually a little worse from the colder weather.

Did anyone have their neuropathy improve more than 10 months out from finishing chemo? I'm getting the idea this may be what I'm stuck with.

Congrats on the TE Special K! Hope you are nearing the end of this nasty marathon!

PatinMN

TTfan - I ended taxol with a numb big toe. I started taking acetyl l-carnitine for a completely different reason, and noticed a couple months later that the neuropathy was gone. This was at least a year and a half to two years after finishing taxol. I stopped taking the acetyl l-carnitine and after a few weeks the numb big toe was back. I started back up again at a lower dose and eventually the numbness went away and hasn't come back. I started out with two 500 mg capsules twice a day. The second time I took it I took one 500 mg capsule twice a day. It's pretty expensive - much cheaper through Amazon than at GNC though. Makes your pee smell bad. I couldn't swear that the l-carnitine solved the problem, but it's a pretty big coincidence if that wasn't it. Acetyl l-carnitine has been used for diabetic neuropathy, so it makes sense that it might help chemo-induced neuropathy.

SusanHG123

Kate, Sad you have to join the "rare and unusual"-how I am referred. I had chest wall rads. 37. 30 chest wall and 7 boost. None to axilla. My initial tumor was right lower quadrant and > 6x6 cm. I was smaller at the time, did not smoke, occasional scotch. Breast fed 4 children until they almost got up and walked away. By the time rads started I had one mastectomy, lots of chemo, and oh so many folk grabbing a feel prior to surgery. Rads were boring. I walked in every day @ 0750. A tech told me to take off everything from my waist up, put on a gown and meet him in the back. I was on the table. Rads, And off getting dressed. Whole thing took way less than 15 minutes. Boring. One day after the ...take off everything... I said "It would be nice to walk in one day and be met with flowers in one hand and a nice bottle of single malt scotch in the other." They just looked at me.

I have a friend who owns a pharmacy with compounding. He prepared three formulas for me to use-I had no burns. None. And I am a true pale face Scandinavian-red hair and freckles. I was a slug by week 4 though.

For me--rads were one more way to kill the SOB cancer cells hiding in my body.

Stand tall. You will make the right decision for you.

Much love

TTfan

thanks PatinMN! Sounds worth a try! I ordered a Combo of alpha lipoid acid and the acetyl L carnitine from Amazon. Appreciate the suggestion - numb fingers crossed 😉

SpecialK

Thanks all!  Doing fine today, have not taken pain meds, two drains which will hopefully go on Monday at the post-op.

Moonflwr912

Specialk! So glad to hear it. Fingers crossed!

SpecialK

moon - thanks - I know you know!  Right now it is pretty exciting to have an expander, even one with no fill in it, lol!  My new PS seemed pleasantly surprised at how well things went and how healthy everything looked, so yay!

Moonflwr912

Specialk, Shhhhhhhh! You didn't say anything..... LOL

SpecialK

moon - lol!

PatinMN

TTfan, keep me posted - I hope it works for you

debiann

Yay Special K, hoping all continues to go well!

ang7894

Today I am cancer free for 4 years !!!

ashla

ang7894

Yippee! What a nice way to start this day! Keep em coming...

ashla

With all the discussions we've had regarding hormonal therapies, i don't think we've ever asked this question.

Is there anyone in this forum or known to members of this forum who didn't have any serious side effects from their anti estrogen therapies? Anyone sail through the 5/10 years?

lago

TTfan I still have some (left foot) but it did get better after 4 years! my left heel used to be numb all the time. Now it only happens a bit in certain weather changes. Most of the time I never notice. I was told after 2 years if it didn't get better it wouldn't but mine did. Later my NP confirmed it can happen but she didn't want to get my hopes up.

SpecialK I can't believe you are still going through this. Really hope this is the final stretch for you.

Ang

JeniferE

Sammy3,

I am responding to,your older post about chemo recipes for triple positive. I had a large tumor, was grade 3 but stage 2A like you. I only received Taxotere with HP. Often worried as I found so few like me, but surgeon and MO agreed this was good for me. Hope so

JeniferE

SpecialK,

Glad surgery went well. Keep us posted