TRIPLE POSITIVE GROUP
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well I am back visiting. I try to stay away but I just can't do it forever. I need to check in. Living well past bc is always a challenge for me lol. I am off to have an ulstrasound on Monday of my right breast for a pea sizes hard lump I noticed a few week ago. My onc is out of town and we had had to move my December appointment a couple times due to vacations for both of us.
She had another doc take a look since I don't see her for a month and we are scheduled to go to Bali on the 28th. She could feel it but is hopeful that it is a superficial granular thing. ME too, lol. But every time I hear you don't have to worry, it turns into well, it's time to worry.
I am going to start reading backwards to see what I have missed, but to all my early cohorts, I hope you are all doing well!
In 10 days it will have been 9 years, so I am still holding onto that other shoe and hoping it doesn't drop. In nine years, I've watched my son get married, my grandson be born, another one due in 3 months, my daughter graduate from college and start life on the west coast, traveled to many places with friends...so I am living well past BC, but it is sure never far from my mind.
In between all those time, I found some kind of lump around my neck/throat area that they thought was a subclaicular recurrence two years ago. That was a rough 2 weeks while they did all the tests for that, deciding it was nothing to worry about. I couldn't evn get a plastic surgeon to remove it. Although I notice it more than anyone else. A few other issues that have been annoying, but not life threatening.
So lefts toast the new year with continued hope and happiness!
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Has anyone had a savi reflector put in before their lumpectomy? Getting mine done tomorrow along with HP infusion. Seems like a lot for one day.
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fluffqueen!
Congrats on (almost) nine years! Sounds like you've been living well (Bali! can I come, too?). I'm only five years out, but I'm still holding that other shoe, too. Right now, it's this weird pain on my right side that I probably got from sleeping in an unusual position. Best of luck on your ultrasound! Special K is around, still providing awesome advice to all of us.
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found out today I join the triple positive club. They could only find a 3mm spot on 1 of the 3 sentinel nodes taken out during my mastectomy. Everything in the breast came back DCIS (very extensive) but they couldnāt pin point any invasive spot within that, but obviously it must be in there somewhere. So, chemo and rads with a year of Herceptin are in my cards. It makes me hopeful to see some of you years out still going strong. I have 3 kids under 5. I just want to be able to see them grow up
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amninn3 - stay close. The outcome for TP is so much better than it was before Herceptin. Ask all the questions you have and someone will chime in. If you haven't already found a link for younger women, I suggest you look. I also found the "starting chemo >>>>>> tremendously helpful. Even though we didn't all have the same diagnosis, we set up a private Facebook group and were able to share pics and SE's. Loved seeing us get bald and then hair back on about the same schedule.
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Amninn3- I echo Taco1946 about finding a Starting chemo group - My group was Starting Chemo October 2018. We are still in contact and started a Facebook group to keep up with each other. These woman were my biggest support except for DH. I'm sorry you have to be here, but these people on this site are the most helpful, supportive people you will find. I will finish my last HP next Tuesday. It has been a very long road but you can do this. Take help when it is offered and don't try to be Super Woman. Rest when you can and drink, drink, drink!! If you can't drink water, try lemonade or anything that will work. Let us know how you are.
Annie
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Thanks so much Taco1946 and Annie60. I shall certainly take your advice!
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Lulu24,
Thanks for the reply.
Was wondering who else is on the long haul with AI's?
I am still dealing with chronic fatigue, and arthritis in left wrist. No one seems to talk about the "after treatment" AI treatment for 5 years. I am 62 and still working 40 hours because If I dont I have no medical Insurance and all I want to do is sleep. I use my lunch hour to take a 1 hour nap every day, am taking CBD to help with wrist pain.
Life is not beautiful, just a fog.
Angelsgal57
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AngelsGal57 - All of us who are TP take some kind of hormone suppressor - usually started after chemo but while still doing Herceptin. Pre-menopausal women usually are given tamoxifen. Post menopausal usually take one of three AI's. Depends on physician preference and how well you tolerate the first one. I started with Astrozole and am now on Femora. Generally symptoms are due to further hormone suppression so basically another menopause. Fatigue and joint pain are common. Also hot flashes (I was 71) and insomnia which adds to the fatigue. Keep track of the SE's and talk to your MO about them. I switched a mild tranquilizer I have been on for years with another one and my hot flashes went away. I take arthritis strength Tylenol for the joint pain. Some people have found that a low carb diet is helpful (I admit I haven't been willing to do that yet). Be certain to stay hydrated and try to get a little exercise - even if it's just parking farther away or a walk around the block after dinner. Consider what tasks don't really have to be done or done so often. Ask for help with routine tasks. We are not "wonder women". We are human beings with a chronic condition which can be exhausting.
Look for threads on BC.org with the name of the particular AI you are given. I also suggest "Doing well on AI's."
I absolutely understand working longer than you want to for insurance reasons. We paid a fortune for DH's coverage because he had a heart attack in his early 50's. I had a brain bleed at 61 and no one would even consider me. Fortunately, I could get covered by paying through my employer. It was a very scary time for us and I'm certain it is for you too.
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thanks Taco1946
That is very helpful.
Angelsgal57
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AngelsGal,
Some of us are premenopausal, but suppress ovulation so we can take an AI instead of Tamoxifen. I get monthly Zoladex shots so I can take Aromasin (exestamane). I've been on this regimen for over four years; it's OK. The side-effects definitely diminished after the first six months or so for me.
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Thanks ElaineThere - I'm old and the term "ovarian suppression" wouldn't come to me when I was writing the post.
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ElaineThere - Did you have to do zometa infusions while you are on zoladex? Zoladex/lupron are the side effects pretty much the same?
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neeli,
After I developed full-blown osteoporosis and "a high risk of fracture," my MO prescribed Prolia injections every six months. My bone density has improved to osteopenia. Lupron can be monthly or every three months. On my OS thread, some Lupron users (on the three months cycle) have said that the side effects are more intense than monthly Lupron or Zoladex. (Zoladex is only monthly.)
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Hi everyone, I am new to breast cancer.org but find it so amazing to have a huge support network!
I was diagnosed with Stage 1 triple positive IDC in October 2019. I have been through 3 rounds of TCHP and oddly enough I started my period today. I messaged my onco and the nurse said it can happen but if I get it again next month they'd want to check my hormone levels. Should I be concerned? I know that progesterone and estrogen levels rise during your period and that doesn't seem to be a good thing right now. Any thoughts or advice are appreciated!
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Jdorne1,
My period lasted through two months of chemo (Adriamycin + Cytoxin). But, it stopped during the third month (Taxol + Herceptin + Perjeta). I don't think the changing hormonal levels mattered much then. Sure, in the long run, my Oncologist put me on hormonal therapy to reduce how much estrogen I produced. But, that wasn't introduced until after chemo and surgery. One step at a time!
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thank you
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Welcome, Jdorne1!
We're sorry you find yourself here, but we're happy you're here and hope this is a place of great support for you!
The Mods
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Hi All,
Welcome to place you never wanted to be to all the new Ladies.
I hope everyone is healthy and fighting to be even healthier this New Year.
Good news, about two weeks past, DH asked me if I had our Primary Care's (PC) phone number. I called it out from memory. No joke. I am using a calculator less and my spelling has greatly improved. My last Herceptin was August 2017. I started Arimidex April 2017 and moved to Aromasin October 2018.
We are at Gulf Shores, AL for a little break. I have run on the beach when it has not been to cold. I awoke to 34 degrees this morning. Ouch! I am not running a marathon and I am running, feeling really good. Yes, I have pains and I get tired. Everyday gets a little better. My hair is thinned and my skin looks old.
I am alive and living; not existing.
My point is that it takes time for our bodies and souls to heal.
I did have a scare. The reason for the PC's number was that I found a lump on my left, outer thigh and DH was making an appointment. My PC said not to worry because returning cancer would not go to my thigh. I know he meant well and that was not reassuring. He said that he wanted me to see a Surgeon and he'd get me an appointment. I pulled out my cell and replied that I was texting my Surgeon now.
Saw the Surgeon and was back in the OR in three days. Surgeon agree with PC that the lump was most likely nothing and wanted it removed for 100% confirmation. Had the same Anesthesiologist as for my BMX. He remembered DH and me. I said I was not the basket case I was that July day in 2016.
The lump was nothing but a bruise and as my Surgeon said peace of mind is worth the surgery ... at least for me.
Coach Vicky
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Coach Vicky, THANK YOU for lifting us up this morning. You helped me a year ago, and are still helping me, and those new ladies who are just starting their journey. I will be "alive and living" too. Hugs, big hugs! Lisa
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Good morning everyone. I'm trying to get some feedback on the importance of hormonal therapy for us triple positive. Finished chemo in August. Started Anastrozole in Oct. About 2 weeks in had a rash across torso. Stopped and went on prednisone for a week which seemed to take care of it (although I still have scars). Started Exemestane early December - same thing happened. Now I've had 2 more flares of this rash and they have become somewhat painful at times and still seem to be scarring. I'm on my third round of prednisone now to try and knock it out. I meet with MO tomorrow.
In anticipation of her wanting to try yet another flavor (or Tamoxifin) I'm trying to learn as much as I can regarding the options.
Any input is appreciated.
Thanks.
-Carrie
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Alice I have found this tool helpful:
https://breast.predict.nhs.uk/tool
In my case, hormone therapy is more important for 10- and 15-year survival than chemo or Herceptin. My BS told me it has "the biggest bang for the buck."
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Thanks Ingerp - just what I was looking for (but not what I was hoping for)
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Hi Aliceneed - I too started Arimidex (a year ago) and only could tolerate it for about a month. First came the horrible bone pain, then the itchy rash all over my body - I already take daily prednisone for my auto immune diseases. I stopped taking Arimidex immediately and MO gave me Tamoxifen. We had a tiff over the amount to take, I wanted to start out at 5mg and he said no. We came to an understanding at 10 mg. I have yet to take it because of my severe Hot Flashes. (I started out at 1/2 dose of Arimidex too) Best Of Luck
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Hi Ingeris - If this is true that Hormone Therapy is more beneficial than chemo and Herceptin, I'm screwed. (I know you said its more beneficial to you)
I plan to see a Doctor in a few weeks to give me a Nerve Block (SGB) to help ease the Hot Flashes. If it helps with the Hot Flashes, I wonder if its too late to take Tamoxifen? Is there a cut off point that Hormone Therapy doesn't help if you havn't started? I'll read your link - thanks!
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If I'm reading this right, I can quit my AI's immediately. They don't change my outcome. Can that be right?
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Taco,
I've played around with that calculator a bit. If I were older when diagnosed, the AIs would matter less.
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Iām really no expert on the calculator, but wanted to point out that tumor size is in mm, not cm (so my 1.6 cm tumor went in as 16). People obviously have more tumor features specific to them that are not reflected (like ER+ %). And I definitely would not make any treatment decisions based solely on the calculator, but it might be a discussion point with your MO.
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Aliceneeds
Document this with your insurance. Track what "brands" you have taken. If these are generics, go for the brand name.
Coach Vicky
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Coachviki, I am so glad your surgeon was willing to operate and stop the "what ifs". That's so good you know for sure what it was. š¼š¼
I have finished Herceptin in September and that's it. In my country, there's nothing more I could do.... I am on Zoladex + Tamoxifen.
I have told you people here about my osteoporosis, dx last year prior to starting hormonal therapy. In June, my blood work was bad, bone resorption markers off the chart. That was end to Aromasin - that and the pains I had. So I got switched to Tamoxifen I started preparations to take bisphosphonates - had 3 wisdom teeth surgically removed and one more endodontically repaired. I was scared as hell to take the bisphosphonates... I did some reading into it, it really is a scary medicine. I got OK from the teeth surgeon and so I went to my osteologist. He ordered a new DEXA scan and blood work. And guess what - just 6 months on Tamoxifen, and my good eating and weight bearing exercise and vitamins, my bones are stable. The bone markers are exactly normal and my spine even managed to grow a tiny bit of material, only +0,3%. It's almost nothing, but it's not declining, it's stable and even recovering a bit. So my osteologist doesn't think the bisphosphonates are necessary at this point. I am so happy... I have my yearly plan to have 10K steps daily and I am using a weighted vest. The osteoporosis was diagnosed in my spine, it was - 2,6 last year, now it is a bit better.The hips were OK, not even osteopenia. So I hope hope hope to be able to stay away from that scary medicine... I am taking prescription strenght vitamin D in two various forms and vitamin K2,all as per my osteologist.
Ingerp, glad to "see" you here, I hope you are well! š¹š¹
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