TRIPLE POSITIVE GROUP
Comments
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My onc told me a history of heart issues in your family does not necessarily increase your risk for heart issues with Herceptin. The way she described this was very helpful to me in understanding my risk, so I thought I would share.
She said it very much depends on the type of heart issues that run in your family. She said Herceptin affects the strength of the heart muscle to pump (aka heart failure). If heart failure runs in your family, you may be at higher risk. However, if that heart failure is due to prior heart attacks related to coronary artery disease, that does not necessarily increase your risk. The risk is related to problems with strength of the heart muscle to pump, not problems related to heart attacks related to coronary artery disease. Some people develop heart failure due to other reasons not related to coronary artery disease. Those are the riskier types of heart history to have in your family, in relation to going on Herceptin. Even so, she said you would still just do your echos and proceed accordingly.
My mother, father, and sister (age 46) all died of heart attacks. My father had heart failure, but it was due to prior heart attacks. So I was pretty concerned and her information helped me feel more comfortable proceeding with Herceptin.
NancyJill - hope your MUGA comes back good!
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Hi, I'm new to this group, thank you fluffqueen01 for inviting me. ..and thak you dance tracer about the herceptin info....the heart issue has been scary for me if I get a treatment plan that includes that...which sounds likely. But, luckily I have no heart issues known in my family. In fact, I started a vegan diet about five months ago after my hubby was dx with CAD and had a stint done....
So I think im pretty heart healthy. I hope to have my full pathology report on Wed (unilateral mastectomy done last Tuesday)0 -
It's been a while since I've been on the boards. Was just so overwhelmed with all the information and getting more stressed. I am doing better and was wondering if any of you have made the switch from tamoxifen to denosumab (arimidex) ?? I am meeting with onc later this month about the switch as it has been 2 yrs since I started chemo thus ending my cycles. Did anyone experience more severe side effects or symptoms?? Tamoxifen has been pretty good to me and did not have any issues taking it. I think I read somehwere that taking tamox for 2 years then an arimidex for 3 yrs is actualy a good combination and had good statistics. Any feedback is appreciated. Tks.
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LLL - I just made the switch from tamoxifen to letrozole (femara) another aromatse inhibitor today as a matter of fact. I also did alright on tamoxifen. I figure if the letrozole doesn't work out I can go back to the tamoxifen. I think denosumab is not an AI. The main AIs are letrozole (femara), anastrozole (arimidex) and aromasin. Here is a link to the BCO info on AIs- LINK0
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LLL - denosumab is not an aromatase inhibitor - it is the drug name for Prolia/Xgeva which are bone strengthening drugs. They are sometimes given to those of us who have had bone strength issues while on an aromatase inhibitor.
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Omaz,
My Onc put me on Femara today. Said the joint pain I have with Tamox, may go away, or it could get worse. He said 1 in 10 women on Tamox get joint issues, while 2 in 10 on AIs. Ugh. Hope it goes away, that'd be sweet!
Also he said Tamoxifen isn't as hard on the bones in menopausal women and from the way he talks about Tamox, I think he might have a preference for it. But I am starting the AI to see how it goes. Please keep me posted on any SE you get, and I'll do the same! He also said if I don't like the AI...I can go back to Tamox. So that's good to know.
Also he said I'm at the low end of normal for weight, that if I could get up about 15 pounds to 130, the bone loss may not be as significant as if I stay where I am. Said heavier women carry that weight all day and it jars the bones...lol. So in effect, weight baring exercise!
I feel stronger and healthier at 125 than I do 115 (much healthier frankly)...but I can't seem to get an evenly distributed fat layer when I go that weight....it all goes to the belly, and I can't stand that...
He also started me back on the same Ace Inhibitor I couldn't take last time...lol...cuz the thumper is not getting better....who knows, maybe I will be able to tolerate it this time.
Nancy,
I hear you on the Easter/sugar thing. Omgoodness. I was so OFF sugar, and then, well Mini Robin Eggs are my all time favorite candy...I've eaten half a dozen bags in the last few months, and this morning had DONUTS for breakfast. Yummy creme filled chocolate fresh baked donuts. And they were worth every single calorie.
So, starting tomorrow, for a few days I'm back to less than 15 gms a day of sugar until this monkey is off my back. Boo! BUT I LOVE SUGAR! So I have to get it under control....I feel like I need a 12 step program or something.
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TonLee - We are starting the femara together - are you doing the generic letrozole?0
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omaz and tonlee - you have probably read this before, but I will put it in here again. I went on Femara last August, right when it went generic. The pharmacist said that the thing to do is to find the one generic (if you are not on Femara proper and you would need a specific prescription from your MO for Femara instead of letrozole, and a supporting reason why since the cost is higher) that does not give your problems and then stay with that brand. I take the pink one by Mylan and I get it through Express Scripts by mail. It says right on my profile with them that no substitutions are to be filled, only the Mylan. If they could not do that for me my neighborhood CVS said they could specifically request it for me. You may find another generic is best for you but the key is not to mix and match - find the one that gives you the least SE's and stick with it. I have had minor aching/stiffness - nothing I can't live with, and have developed "trigger thumb" but I am waiting to see it that resolves on its own. I have had one injection of Prolia because my bone density scan did show accelerated loss after chemo and 6 months of AI, but it was not significant.
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I am going to the oncologist in a week and have no idea what to expect from that first meeting. If anyone knows of a good resource for me, I'd appreciate it. I'm trying to get my questions lined up, still have to have more surgery to clean-up margins This waiting for my appointment is driving me crazy.
Did your oncologists order scans? Any advice for me so that I am prepared?
Thanks - I lurk here every day.
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Chacha..glad you are on the thread. It is overwhelming, you are right.
I did the easter sugar thing too. Bought a bag of jelly beans last week, the big ones, and ate the whole thing. Had lots of whopped cream yesterday too. Yum!
Tonlee...i have forced myself not to eat a donut because I am afraid if I eat ine, I eill eat half a dozen and it will be all over.0 -
Vbalmom...i will pm you my list of questions later tonight. Get a tape recorder and tape the meeting. It really helps. I inyerviewed three oncologists with the same questions before deciding. Ask to see the infusion room and make sure you will be comfortable. Meet the nurses to establish a relationship.
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I got my port removed this afternoon-hooray! Wow, it's so nice not to have that catheter over my collar bone anymore not to mention it will be nice to not have the huge port sticking out. It was quite interesting. My vascular surgeon removed it in the office. Honestly the most painful part was the Lidocaine injection. The rest of the process was just weird. Having the surgeon coming at you with a scalpel is unnerving but I didn't feel anything except tugging and a strange feeling when the catheter was pulled out. I did ask him if he could put another port in if I ever need it and he said he can put it very close to the same place. I also asked if I could keep the port after he removed it and he said he had never been asked that before-leave it to me. He said I couldn't have it because it is sent to pathology-what's that about-what are they testing?
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Fluff, thank you! I am wondering if I should book my second opinion now. It took me over two weeks to get an appointment with this one. I have been pleased with the doctors, nurses and staff in this group and hospital so far. And they have valet parking.
Dragonfly1 - awesome at having the port removed! May you never, ever need one again!
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Dragonfly - HUGE congrats on getting the port removed!!! And thank you for the description - I was curious! Had no idea it can be done in the surgeon's office. Crazy!
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LLL I've been on Anastrozole (generic Arimidex) from the start for the past year. Chemo shut down my ovaries and my onc felt that bases on being perimenopause and my family history that I was going to stay there. I had tests for about 6 months just to be sure.
I have some stiffness but functioning just fine. I mean if I can do 60 squats and 30 lunges (and a bunch of other strength training exercises) I guess I'm not that stiff.
Most of it is fingers and toes in the morning that goes away. Also in my thighs so if I sit or stand (stay in one position) too long I notice it. Takes me a few minutes to un-stiffen. I have heard Tamxofen to AIs is just as good as AIs from the start and both are a little better than just Tamoxifen for 5 years.
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Dragonfly, I am pretty sure they are checking for infection, to make sure no bacteria is deep seated and need tx.
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Dragonfly, congrats! Mine came out last Ten days ago when I had my fat grafting and nipples done. Honestly, that was the most painful for me in healing. The Lipo part was rally sore, but for some reason, the whole area around the incision and where the port was hurt a lot and was really tender.
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Dragonfly - Congrats on getting the port out - !!!0
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7 years ago yesterday........
7 years later
I thought i should share this with my TRIPLE+ Sisters.
Hugs♥
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♥ ♥ ♥ Sheila
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Love it Sheila...thanks for sharing and congrats!!!!
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Thanks for sharing Sheila - !!!!0
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Yay Sheila. Thanks for checking in and letting us know. So happy for you
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Sheila...congrats! Heres hoping we follow your lead.
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Thank You for all the encouraging wishes my friends.
Good Night♥
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Sheila, now you have to knock on wood, throw salt over your shoulder etc, just to make sure you have all your bases covered and keep it going for decades more!
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WOW! I just spent most of today going through some of the prior posts...only back to my dx date and I'm overwhelmed, in awe, scared, and encouraged, confused....and more I can't even express! You gals are awesome! I'm much older than most of you (57) and your energy and courage amazed!
I'm not even started with treatment..have my post op on Thursday and I'm finding it hard to concentrate to absorb all the information I need, (even getting my dates messed up). My Bs told me I wouldn't have to start treatment until after a trip (planned many months before my BC dx) to Italy in May. I'm hoping I can enjoy the trip and not obsess about the big C.0 -
oops, chachamom ... i'm the oldest one here, i think. 67 this year. i've got ten years on you. ha! a trip to italy should help you relax. enjoy it and try to not worry. we've all been through what you're facing and we'll all be here for you. have fun on your trip!0
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Thanks YaYa!
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Chacha, I am 58, so there are a couple of oldies on this board. Enjoy your trip, it always takes time to get started anyway, I wad diagnosed in Nov had my BMX in DEC, and started chemo in FEB. Whatever works. Much love
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