TRIPLE POSITIVE GROUP

I am only scheduled for one Mammogram a year. No other scans have been suggested. It's done on the newer 3D machine and it's diagnostic for now. After the mammo I wait for the Radiologist to look at it and decide whether further scanning with an ultrasound is necessary. I truly appreciate not having to wait a week or two for the results!

33Triple - acupuncture has really helped with energy and hot flashes, not so much (so far at least) with joint pain or neuropathy. The hot flashes were really horrible though, more like a nausea/panic flash than a hot flash, so I'm grateful for any relief. The acupuncture is actually very relaxing. I find turmeric helpful for joint pain (from the aromitase inhibitor). I thought it helped, but then thought it might have been better for other reasons and stopped - joint pain got worse quickly, re-started turmeric and it improved again so I'm sticking with it. Yoga is great too as long as you have enough self control to not push too hard - for me that takes the right teacher or I fall into competitive mode and make things worse.

Rozem - thanks for sharing - love the long term success stories. We get told all the bad ones it seems, so I lap up the good ones!!

RE scans, I just get a yearly screening mammo. My MO does a very thorough physical breast exam every 3 to 4 months though - I honestly have more faith in her careful exam than I do in the mammo. I have dense breasts (unchanged from hormone blocking), but my tumor was initially picked up on a routine mammo. They actually didn't see a mass, despite the 2 cm or so of DCIS around the small tumor, but there were microcalcifications that alerted them to do a biopsy which diagnosed the invasive tumor.

Hi group!

I hope everyone had a wonderful holiday. I made it to Christmas then promptly got sick for what seemed like forever. Throat issues and just sick in general. I told my husband I felt like I was back on chemo. Just wiped out and could sleep all day, lol. Finally went to the doctor who said whatever I had settled into a sinus infection. Doing better now.

This week is my five year mark! I'm celebrating with a visit to my breast surgeon. She is checking on a cyst that was causing me some pain last year. Seems to be somewhat worse and more tender in that area. Hoping it doesn't mean it is bigger or she thinks I should take it out.

Special K. I am knocking on all kinds of wood and sending healing energy your way. I hope those drains are out. Don't try to get stripper foobs, lol.

For the Prolia discussion..I get Prolia shots. I have joint pain and it might be a little worse when I get the shots but kind of hard to tell. No other se's that I have noticed. I'll get a density scan in december. I had a couple spots that had dropped so they started the shot right away.

On acetyl-l carnitine, I took it all through Taxol and didn't really have much neuropathy. Only freezing cold fingers and toes. So bad my husband put heating pads and hot water bottles in bed with me as he couldn't take my cold feet on his legs, lol.

My hot flashes on Tamoxifen were the panic attack, drenching, heart racing kind....awful, awful. Much better on arimidex. It is the one thing about arimidex I like better. I don't like what it has done to my skin...just looks old. And sex hurts, but I have a lidocaine prescription that helps a lot.

Thought you might enjoy a picture from my son's wedding in October. Fun day!

fluff, good to see you here! Lovely pictures!

Much love to all

Welcome Chickie24. So sorry you need to be here. I don't post often but you will find lots of great support and information here. The beginning of this process is very emotional and overwhelming. It does get better once you get treatment started. Chemo is rough but doable. Have you found the thread for people starting chemo in February 2016? It may not be started yet but you can start it or just watch for it. It's helpful to connect with others going thru it at the same time.

Good luck with your appointment tomorrow and this entire process.

Sherry,

Right there with you!

fluffqueen01 - I can't say how much it means to see your photos. I was diagnosed right around Thanksgiving, and just started treatment a few weeks ago. All I want to do is dance at my sons' weddings, (they are 14 and 9.) Maybe it's a stretch, maybe I should be more realistic and aim for high school graduations. But I really want to have faith that I can see farther out than that. It's been hard this week, so thank you.

Hi Everyone!

I am relatively new to the boards as wanted to say Hello!

JerseyGirl22- Good Luck on your radiation treatment. I completed all my sessions (28 in total) last Friday which weren't that bad. I had no side effects to speak of and just a little itchiness. Just waiting for the burn to calm down and start fading.

33Triple - I wish you the best as you begin your journey, and always remember that we are all here for each other. I know what you are going through. I had a port, did chemo before surgery to shrink my 4cm tumor, had a sentinel node biopsy before BMX surgery and the 3 nodes my BS removed tested positive which during surgery she had to take out 4 more...luckily tested negative, and BS was able to get clean negative margins. The bummer news was that my tumor tested HER2+ when originally the biopsy was HER2-. It took some time for me to process that crappy news, then my MO told me that I have to do a year of Herceptin and 6 months of Perjeta infusions. My last chemo was 9/8 and I had my port removed on 9/23 - so my infusions are IV in my arm because I was NOT putting the port back in!!! Chemo (Adrymycin/Cytoxin/Taxol) for me was not the worse part..it was the Neulasta shot afterwards that hit me so hard I had to switch to Neupogen which was better.

Through my journey I have remained positive with the support of my family, friends and everyone I found on the boards. When I wake up each morning it's a good day, even if I don't feel great but I am alive and have a lot of living left to do and so do you!!

I do have a question for those of you who are on Tamoxifen, Lupron and Aromasin. Could you share any side effects that you have had? I have my next infusion on 1/25 and my MO is going to ask if I want to do Tamoxifen only or do Lupron and Aromasin. I have a friend who did not do well on Lupron, which makes me concerned. I am leaning toward the 10 year Tamoxifen route - but still deciding....

sharapril - I am on Lupron (actually had my shot today!). I have a Lupron shot every three months. The first time, I had a headache after the shot. Other than that - I really haven't had any side effects from the Lupron other than some mild stiffness and soreness. I should add that I am doing Lupron and tamoxifen - not Lupron and an AI. My doc was concerned about bone density but also felt it really important to do OS since my cancer was so very hormone sensitive.

I haven't been on in a week or so. My second surgery to clean out the oozing hematoma really set me back. I am more than 6 weeks out from my LX and still not cleared for radiation. I had to cancel my original consult--trying to decide whether to go ahead and meet with the RO or wait for an official all-clear from the PS's office, hopefully Thursday.

In addition to the delay in rads, I am nervous because I started my period. My MO plans to start Tamoxifen after rads, but I know he wants to do OS as well. Now my cycle is ramping back up after chemo...

At least everything seems to be healing properly this time, I have about an inch of hair on my head, and my neuropathy has improved. I'll just be grateful for that and not give my laundry list of negatives for now.

So sorry, Musogirl - you could probably still meet with RO if you wanted to, just to get it out of the way. Then you can go ahead and schedule rads when you're ready and all healed - one less appointment to deal with.

Hope you are feeling better today.

I'm feeling the same "one step forward two steps back" emotions lately. Although chemo has been pretty uneventful, I still have so much more to get through (I have only gone through 3 of the 12 Taxol, and still need 4 AC after that, and I still need more surgery and rads later this year, and then more Herceptin.) This weekend I went to a friendly dinner with some local women, two recently diagnosed this fall, one a survivor of seven years. Although I had a really nice time, I couldn't help feeling resentment and anger afterwards. All of them have moved on, their diagnoses were not nearly as aggressive, one of them happily went through a mastectomy and doesn't need any other treatment. Meanwhile over the last few months I had been consumed with fear of recurrence and dying. I know people deal with things differently, I'd also like to share that I've also had my very good days too. But lately it's been a pity party of one - I've been angry and felt it was unfair that I still felt alone in my diagnosis, and then I was angry at myself for being so petty that people have healed and moved on.

I think we're entitled to get mad.

I've never heard of hot flashes from Herceptin. Are you taking any Tamoxifen or AI? It just might be chemopause too. I had bad GI issues on chemo but not on Herceptin. I found that Prilosuc never worked for me. At the end I was on Nexium and Carafate Suspension. Now when I have acid reflux I use over the counter Gaviscon (check with your oncologist). Sorry you are going through this.

I too had Carboplatin, Taxotere and Herceptin. Perjeta wasn't approved yet and I didn't qualify for the study even at stage IIB because I had no node involvement. I hear it's really effective though.

Birdysmom,

It sounds like your doctors don't have much relief to offer you other than prescriptions for more meds. Maybe, you need to shop for a new MO, who might be more sensitive to your concerns??? I don't blame you for feeling frustrated. I never got hot flashes from the Herceptin. I got them from chemopause and now Zoladex, which is designed to suppress ovulation. Hope you find some relief soon!

Fightergirl, I got a rash about a week after my first Herceptin/Perjeta infusion... it went away before I had my second adn I never got it again... My onc said it was the perjeta...

have a rash just like that on the inside of my arms...itchy and burns...I had benadryl with my last herceptin infusion.