TRIPLE POSITIVE GROUP

coachvicky

Kattis894

Thanks for posting ... a great message of hope for us all.

Vicky

kae_md99

thanks hap

Jumpship

I accidentally left my tamoxifen home on a two week trip. I didn't ache. I didn't have to pause before walking so my joints wouldn't hurt. I slept.

Now I'm wondering since I had a double mastectomy and therefore have few breast cells what is the advantage of taking it? It sucks the life out of me. I wouldn't question it if I had a lumpectomy and lots of cells. Thoughts

ElaineTherese

Kattis,

So glad to hear from you and about your new lease on life! Hope you find a meaningful new career for yourself.

Jumpship,

What % ER+/PR+ were you? My lump was apparently 95% ER+, 95% PR+. That motivates me to take my hormonal therapy. However, if my percentages were lower and I were having "lifesucking" side effects, I would be more likely to reconsider. Sorry to hear Tamoxifen has been such a drag....

kae_md99

jumpship,

dont have any advice but lupron gave me the same effects. when i had my bmx last friday,i purposely did not give myself the shot that was due the following monday. i know i cannot recover well from bmx if i ache all ove esp my joints. i would not have handled the pain from it and the pain frombmx. i did call my onco to ask her permision to be on lupron break but she never called back. oh well, i will just discuss it with her on my follow in 2 weeks. in fact ,i am not sure if i want to take lupron ever again. quality of life matters... sorry you are having bad effects from tamox...

Suburbs

Kae md99, congratulations on your node report card. PCR and NED! Hang in there as every day gets better.

Kattis, thanks for the update and best wishes for your new normal.

debiann

Jumpship,

Tamoxifen is a systemic treatment meaning it not only reduces your chances of a local recurrance, but also reduces your chances of developing metastatic breast cancer.

At this point you are assumed to be cancer free, but there is no way of knowing if there are still microscopic cancer cells hiding out in you bones, liver, lungs or brain. These are the organs bc is most likely to spread to.

Deciding when side effects are affecting your quality of life too much and choosing to discontinue treatments is often a difficult decision. There are many threads dedicated to this topic if you want more info or insight.

debiann

HapB,

I'm on Arimidex and doing ok. For me, the side effects were like repeating the fun of menopause one more time. The hot flashes were bad in the beginning, but I only have them occasionally now. The biggest issue for me is dryness in the lady parts but coconut oil is helping in that area. I think that when you are post menopausal when staring AI treatment the drop in hormones is not as great as for the younger gals, so maybe the side effects are not as bad???? Anyone agree or disagree?

I am on the generic form of Arimidex - Anastrozole. I have read here many times that often the side effects are caused by the fillers in the drug and not the actual drug itself. TEVA is the brand that is recommended as being the most tolerable so I have instructed my pharmacy that I only want TEVA brand and they are to notify me if they change. I also check the pills each time I get a script filled.

debiann

I've been on the same drug for almost 3 years. The first couple months were hard, but I can't say that all my symptoms were due to the arimidex as I had just finished taxotere and carboplatin (nasty stuff), was still on herceptin and had a 13 hour DIEP flap reconstruction right before starting the drug. Yes I had aches, pains and fatigue, but who wouldn't after all of that!

ElaineTherese

Hi!

Re: aromotase inhibitors -- I'm on Aromasin (exemestane) -- it's OK. I've been on it since February 2015, and began it at age 47. I could live without the hot flashes, which are particularly nasty in the evening/night hours. Aromasin also made me moody, and has given me full-blown osteoporosis. To cope with the mood swings, I'm on Celexa. To address the osteoporosis, I'm on Fosamax. I feel fortunate that I've avoided the joint pain and stiffness that many other breast cancer patients have experienced on AIs.

I've always said that the best AI is the one you tolerate best! Hope you find one that works for you.

debiann

HapB,

I had a lumpectomy first more because my husband thought it sounded easier. Deep down, I really wanted both breasts GONE. I had close margins - so after chemo I was going to need either another lumpectomy or a mastectomy. I had lots of time to research my options during chemo and saw a cardiologist for advice since the radiation would be on my left side near my heart and decided to do the mx (of course, even with mx there was a small chance that I could still need rads).

There are no easy choices with bc. We all chose the path that helps us avoid the things we fear most. Surgery was no picnic, and it has lots of risks, but I feared radiation more. It may not be a rationale or justified fear, but I was happy to skip rads. It is good that we have options.

Lita19901

Ho, hum. Just sitting here waiting to get my pathology report... and in trying to decipher all the little abbreviations under everyone's posts mean I have come to realize that some of you with relatively recent diagnosis are getting Perjeta and some are not, even with no nodes, etc. And so I'm wonderingly how come?

ElaineTherese

Hi Lita!

In the United States, the national guidelines recommend Perjeta for tumors larger than two centimeters in size, to be used during neoadjuvant (before surgery) chemo. Because of these guidelines, insurance companies are most likely to pay for Perjeta for those who who meet those criteria. However, some medical oncologists do prescribe Perjeta for adjuvant (after surgery) chemo, and insurance companies have been willing to pay for such treatment.

In Canada and other countries, it is sometimes more difficult to get Perjeta because it is relatively new (and there are fewer studies of its effectiveness) and expensive.

Lita19901

ElaineThere - Thanks for the information! I'm wondering what makes one doctor throw everything out there at a Stage 1 BC while others choose not to. Most curious!

Taco1946

Hap - like Debiann, I take Anastrozole. After being on the AI thread, I asked for TEVA after my first 90 days were up. I do think my joint pain is better with that switch. Walgreens carries it - don't know about other pharmacies.

Just had my six month series of checks - echo good, mammogram clean, now breathe!

ElaineTherese

Yay, Taco! I always feel better after I make it through my screenings. Yes, breathe!!!

Kattis894

Thanks for the replies on my post. I have been so positive. It is funny but all of a sudden I just had a couple of really bad days. Worrying! I ended up on some posts on alternative methods looking for suggestions for vitamin supplements, diets etc and just found a lot how chemo etc just makes the cancer stronger when it comes back...I did decide to leave that forum but still feel so vulnerable...it is hard to accept that this illness just does not go away, I still carry it and it can pop up whenever..it is just something that is very hard to accept and live with even though I try my very best. The thought of a reaccurance just freezes me of fear. How would I handle that kind of message? I just refuse to think about it, perhaps that is why I haven´t been on these boards much but it just came back and hit me over the head like a hammer...:( I was hit with a very bad cold and an infection in my scares from my breast reduction on my healthy side (very happy about the result) and my thoughts went to my white blood cells fighting infection instead of the cancer cells...Is it very damaging getting other types of infections while on herceptin?

ElaineTherese

Kattis,

You've done the best you could to prevent recurrence. And that's all you can do. That's all anyone can do. Think about doing some things you enjoy, now and in the future.

((Hugs)) It gets better as time passes.

wabals

Everyone has bad days. They will get to be less and less frequent. Have some fun. If you need Ned's for anxiety ask for them.

Hugs!

meg2016

How can one tell what brand of Exemestane you are on? know mine is a generic but not sure who makes it.

SpecialK

meg - it should say on the label from your pharmacy, sometimes in tiny print - usually includes a description of the actual pill/capsule and the manufacturer's name. Another option is to investigate by the look of the med - with a pill identifier - which you can use by entering the identifying info from the pill itself, or by entering the drug name and it will show you images, like this link:

https://www.drugs.com/imprints.php

kae_md99

hi all,

gotmy pathology back.nodes negative for scarring and cancer, what is left is a tumor bed with only residual cancer cells.not exactly pcr but i am happy with the result.:). praise God!also the dcis in the lef which showed microinvasion in mri did not show any microinvasion in the final pathology.

ElaineTherese

Good news, kae!

Sounds like you had a good response to chemo. Hope you're recovering well from your BMX.

Soxfan75

I posted last week about a lump in the lymph node above my collarbone that I had biopsied. The pathology report came back today and there were no cancer cells detected, just scar tissue. My cancer team is getting together on Thursday to discuss my case and try to determine what caused the scar tissue. It's possible that there were cancer cells in there but the chemo that I just finished killed them, and my body's reaction was to wrap the dead cancer cells in scar tissue. I'm praying there's another explanation because I believe cancer cells located in those lymph nodes put me at a stage IIIc.

All in all, they're the best results I could have hoped for so I can finally breathe a sigh of relief.

ElaineTherese

Awesome, SoxFan75. Keep us posted!

Lita19901

Soxfan, what a relief! I've been wondering all day what you had learned -

GlasgowGirl99

soxfan & kae - great news! Keep positive 💕💕

deni1661

Kae 99 - Super great news about your pathology, I am so happy for you! Thank God. Sending prayers and hugs for continued healing my friend xoxo

Sox, I'm relieved to hear the good news about your biopsy! Thank God again

Taco1946 - congrats on the great check up, that's truly wonderful! Thank God once more

Kattis - nice to hear you are doing well these days! You are positive and forward thinking, good for you!

It is very inspirational and encouraging to see these updates, thanks for sharing!

deni1661

Hap - I was on Arimidix for 7 months and tolerated it well initially. My body aches got so bad I could barely move. Other SEs were constant runny nose, dry everything, thinning hair due to breakage, and severe fatigue. My MO switched me to Letrazole and so far the SEs are far less severe. My fatigue is not quite as bad and the only pain I have is in my tailbone. My naturopath put me on Bosswilla (sp), a natural herb for pain and fish oil for inflammation. I only have 2 HP infusions left so maybe the tailbone problem will go away when I'm done!

I asked my MO about going off the AI but he advised against it. The way I understand it from his explanation is the AI wipes out the hormones that the cancer needs to grow. For triple positive, the AI offers the best fight against recurrence- in his opinion for my particular diagnosis. I love that my MO always reminds me that every patient responds differently and what might work for one may not work for another. This could explain why there are so many variables to treatment!

FleurDeLis49

Hello, all! Newly diagnosed and having trouble finding information about being triple positive. Most of sites I'm finding don't even list it as an option, much less offer any insight as to how treatment might differ from others. Any suggestions on where I can get more information? Thanks in advance!