TRIPLE POSITIVE GROUP

I'm glad you asked, Tamiami. I've been considering the same. My genetic testing found I have BRAC 1 so it also puts me at more of a risk for both. ((Hugs)) for your past few years. ❤️

I had heard the information about people with their ovaries living longer, but I wonder if that's a study of women with BC, and were they high risk for reoccurrence? Just curious. Thanks. 😊

I have a MUGA today. I have already had one Herceptin and theirs a history of high blood pressure in my family so I'm a little concerned.

How many have/had two week vs. three weeks between your treatments? I wonder if that's even possible with the drugs they give us. I was in the trials forum and found this study linking dose dense plans to higher survival. The drugs they used were not any I was familiar with, but I'm pretty green when it comes to the BC information. They weren't sure if it was the chemo or the suppression of menses responsible, but it was interesting.

https://community.breastcancer.org/forum/73/topics...

I'm doing treatment 2 after my MUGA today. Healing thoughts to you all

asher - I have a TN BRAC1+ friend who was diagnosed at 35, she did an ooph after her chemo was done and is glad she did. Also, looking at the study link - these drugs are anthracycline based regimens which are usually given dose dense with two week intervals. The regimen you are on does not have an anthracycline drug, and so is administered at three week intervals. The study was comparing anthracycline regimens against each other at dose dense two week intervals, and at three week intervals. One of the reasons you are on the regimen you are is to eliminate the cardiotoxicity that comes with both an anthracycline and Herceptin, and so that you can receive Perjeta, which the FDA approves with the TCH combo. Some have been able to receive Perjeta with AC-TH, but it is dependent on insurance cooperation.

Special K- I knew you could help a girl out. Thanks 😘 I can knock that out of the way.

Thanks also for the info on the oophorectomy. I'm leaning in that direction.

JerseyGirl22 - yes, I have had similar reactions to H only. Sometimes I get by with minimal SEs and other times I feel like I got run over by a truck! Next week is my last one...woohoo!!

Same thing here. I've had two "bad" Herceptin infusions: no PN, but the run-over-by-a-truck feeling. The other four infusions (I think it's been four, but maybe only three) have been just fine, including the last one. I see no pattern emerging; it feels completely random. My MO looks at me like I'm nuts and said, after I told her about the terrible leg and hip pain I had round-before-last, that she's "never heard of that before." I assured her that I'm not the only one. She's on the lookout.

For what it's worth, I've read (can't remember where) that six months of Herceptin looks to be almost, if not just, as good as a full year. So if we have unpleasant SEs, it might be worth having a conversation with our MOs about discontinuing the drug.

I have an echo today. Fingers crossed that the ticker is working as it should.

davisd - got it - that makes sense now. With pre-existing bone issues an AI might be dangerous for you

Jerseygirl- I had my first Herceptin only on Monday. Today, I'm trying to be productive and just don't feel up to it. My skin feels tight, and I'm just lethargic.

I really hope this isn't from the Herceptin. I also started radiation this week, but it isnt from that. My mo also said I wouldn't have se's from Herceptin. I had an echo yesterday, maybe there's a problem there?

Jodi

Mommato3: Thanks for your input, I appreciate it! MUGA tomorrow!

At first I thought Herceptin gave me no SE. I've finished 8 months ...and my last two made me feel woozy, and my upset stomach has gotten worse over the past month. The wooziness started on the day on infusion and hung on for a couple of days, the stomach issues are worse those days too. I have random days of fatigue and do alot of sleeping.

Hope you get good results from your echo Kate!

Posting here but not sure this is the right thread . . .

I've been on Tamoxifen about 1.5 years. Till now, no major SEs - at least, that I could tell. It's impossible to say what was lingering chemo SE versus a new Tam SE. I really feel pretty great these days - maybe even better than pre-diagnosis. I think this is due to all the physical activity I'm doing - swimming, yoga, and I have a personal trainer.

But about 2 weeks ago, I started spotting and intermittently bleeding. I've had no periods since my 2nd round of TCH, 2 years ago. My bloodwork shows me as peri-menopausal (not post-).

Saw my GYN, she ordered an ultrasound, and that turned some up some thickening of the uterine lining, although apparently not significant. But also, a 3cm cyst on my R ovary which doc is not particularly concerned about (hemoragic cyst), and a 5cm cyst on my L ovary which "needs to be addressed."

Next step she seems to be recommending is a hysteroscopy plus D&C/endometrial biopsy, plus, laproscopic removal of the cysts (or possibly the ovaries). She also floated the idea of a hysterectomy because I will be on Tamoxifen for the next 3.5 years, or alternatively, putting in a Mirena IUD because that is PR-only.

All of this seems to be a result of Tamoxifen. I'm wondering if all of the alternatives/options are on the table? I'm reaching out to my oncologist for her views on this; also seeking a 2nd opinion from another GYN. Are there other questions I should be asking?

Mitdd, I've had a difficult time (change that to most EXTREME) time with nausea/vomiting. I'm on Taxotere, Carboplatin, and Herceptin. My history is that I have always had difficulty with adjusting to medications as simple as Tylenol. Just finished my third treatment and finally seeing a tiny light at the end of the tunnel. Keep talking to your onco and nurse coordinator. I had good luck with Compazine in the past but not with chemo. Lorazepam is a good stable for me to keep my brain from over-exaggerating the symptoms. Lorazepam is a medication that I use in my practice as a hospice nurse for nausea quite often. I've tried Zofran and the related drug products. Now started a new capsule called Akynzeo which is a combination medication lasting 7 days. (Insurance would not cover but the cancer center pharmacist found some coupon to cut the cost. Love him!) Still use lorazepam once or twice a day but at least the food and fluid intake is improving. I get supplemental IV hydration after treatment on day 4 and 6 after chemo which also helps. We tried Zyprexa, which is an atypical antipsychotic, that can be used for tough cases but the side effects were unbearable. Not everyone has the same side effects remember but don't let them give up on finding something that works for you. Finishing treatment is the goal. Be persistent and don't suffer between treatments. Call your nurse coordinator every day if you need to. Best of luck.

Jerseygirl22- So sorry about your yucky feelings!! It sounds like a flu or virus, could it be that? or do you think its se's? I kind of hope its an illness that will go away.....you are on Herceptin only now, right?

ugh....stay tough!

Hi everyone - I am a triple + who has maybe only posted 1 or 2x here. I am pretty active on the Chemo Dec 15 group. As I am winding the chemo part down I have followed you all pretty closely for advice, etc. I am a little nervous about hearing all of your responses/SE's to tamoxifen. Are there any other options for the pre-menopausal group that I should talk to my MO about?

Sammy3,

I was premenopausal, and I'm taking an ovulation supressor (Zoladex) so I can take an AI (Aromasin). But, AIs have their own set of SEs (like joint pain), that I've just been fortunate enough to avoid. Both Tamoxifen and the AIs are effective; it might just come down to whatever you can tolerate best.

Sandcastle23 - thanks!

Jerseygirl22 - I've found a nausea/vomiting regiment of Zofran, Compazine, and Ativan that is working for now. I found it on the Tahoe Forest Cancer Center website. (sorry I cant figure out how to post a link to the pdf.) i can't even due ginger ale. The bubbles are a problem. This has been the roughest round yet regarding the SE. I'm just starting to feel better and go back for round 4 on Thursday.

What steroids are being given during infusios. I was so sick after my first TCH, I didnt think I could continue. The "veteran" ladies on this website told me to request 5 different steroids be given during infusions and I was never sick after that.. Hopefully someone will see this post and supply the names of the steroids because I can no longer remember them. I do know that my onco told me that I had been given all but two on the list during my first infusion at which point I said "add them". It made a huge difference.