TRIPLE POSITIVE GROUP
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Congrats, Cassie! Hope you feel "done." Looking forward to joining you by October.
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cassie - yay!
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Congrats, Cassie !!
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Yea Cassie!
rozem, also ask yourself if you would wonder/regret if you did not take this opportunity. We need to strive live like we are living not like we are dying.
We can all testify that the waiting and the unknown are the most stress inducing. Be kind to yourself and ask for help.
Had H infusion today and asked them to slow it down to 45 min since I was tachycardic. It seemed to help.
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Congratulations Cassie!!
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rose, I always had Herceptin over 60 minutes. I think slower seems to be better where Herceptin is concerned.
Thanks, all, for celebrating with me. I'm glad I was able to do the full year. It's a little surreal, being "done" with all that. Two of my three main nurses weren't there today, so I was only able to say goodbye to one of them. She gave me a hug and told me she hopes to never see me back there again. I agreed.
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kayb It's not all that uncommon for triple positives to be low in the hormone area. I was 30% ER+ and 5% PR+
Yay CassieCat
Rozem I personally like the lack of stress I now have in my job. But I too would be doing the math in your case.
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congrats Cassie!!!!
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Jean, I'm also taking Perjeta as an adjuvant treatment. I'll be the first one treated with this regimen at my center. Let's hope it works well!
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Rozem I would take the job. I had just left a 16 year job to start my own business right before I was diagnosed. Happy I did.
Kayb I can't help you I am 100% ER and 50% PR. I hope you find info
Cassiecat Congratulations!!!! I didn't realize Herceptin would affect hair growth
Rosesrx I had to request that they slow down the herceptin infusion. He was going to do it in 30 minutes and I told him no it needed to be at least 45 minutes
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Gretagirl, they say it doesn't, but anecdotally it seems women find their hair grows slower during Herceptin. My hair is maybe 2 inches long, and it's been 8 months since I finished chemo.
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ok I didn't know thanks for the heads up
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Congratulations Cassie Cat!
I think you'll find your hair will start growing faster. About a year after completing Herceptin my hair was pretty much back to normal (pre-chemo)- and at 1.5 after finishing herceptin, completely. I totally believe Herceptin slowed it down. I am now taking Biotin as well. It was a long haul- longer than non-Herceptin women that I know- but you are well on your way!
It is my belief that cold caps and other hair-conserving therapies will transform the cancer experience. Hoping those days will come soon for all the sisters.
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H over 45 min helped but still tachy at echo this morning according to tech. It will definitely be a 90 min infusion when the dose gets upped.
Back to cutting out the caffeine more. I may have been downing too much iced tea. When they refill and I am not watching while eating out I am probably taking in more than I should.Same with the coffee.
1st full day of the new glasses, which are transitions. Switched from contacts due to worsening astigmatism. Jury is still out. Will give it 2 weeks to retrain the brain.
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Can you all educate me on the new drug added to the TCH combo? What is it? What do the trials indicate as far as treatment? Why in essence was it added?
Thanks in advance!
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You may be thinking of perjeta generic name istrastuzumabpertuzumab. It is another targeted therapy.0 -
Roses ex - I didn't want anyone to be confused, trastazumab is Herceptin, the drug name for Perjeta is pertuzumab.
Tonlee - Perjeta is another targeted therapy that is showing dramatic effect when given neoadjuvently, which is the current FDA approval for early stage BC. Some oncs have been able to get it adjuvently, but is the exception so far. Here is a blurb from the maker, and the trial info. The other trial is the Aphinity trial but I couldn't get the link to work on my phone:
http://m.perjeta.com/patient/neoadjuvant
http://www.esmo.org/Conferences/Past-Conferences/E...
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me culpa I'm blaming it on the new glasses progressive lens Maki g everything near and far look like a fish bowl.
Thanks Special K
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the acne is from the steroids. I went to my derm and got a script for retin a cream. Really helps. I got one period on taxol. Nothing since.
For those of you who are young like me and considering an oooph, my MO says ovaries do lots of good things in the body. She wants to do ovarian suppression with Lupron for me for two years, and then discuss. She strongly discouraged the oooph. I have an apt with my OB/gymn to discuss next week and get his opinion.
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I had an echo today because my heart function after 9 months of herceptin / perjeta had dropped from 68 to 53. They wanted to keep a closer watch on my heart. Well I have been a bit more active over the last month and my heart has actually improved by 2 points so I am cleared to finish the full year of treatment. God is good and answered the prayers for a rise in my numbers. Love, Jean
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rosesrx - no worries, hope the glasses settle down soon! I tried progressives a few years ago and could not get used to them. I have stayed with single vision reading glasses and I slide them down my nose and look over the top - very old school
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Tresjoli2, please let us know what your OB/GYN says--I am researching my options now and leaning towards an ooph, or a total hysterectomy. I don't want to take something that increases a risk of ovarian/uterine cancer, and AI's seem better for side effects. But I know that is a permanent decision with bone density and heart issues. I am a few months out from needing to make a decision, so I am very curious what others are thinking/learning.0
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I was 100 on PR and ER. I did not realize so much about the different levels. These are just things you never expect to be educated about. I am not sure if these have any indication for recurrence or not. I have a bad feeling lately. I had a blood transfusion and my doctor had said I would feel better right away and that was 2 weeks ago...waiting still!
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tresjoli. Ive been on ova suppression for 3 years. I tried switching from tam to an AI but I couldnt tolerate them( tried Aromasin and Femara) my MO switched me bc of the results of the soft study. The thing about the study is it only was with women who had just finished treatment not years out like I am. She said it was up to me if I wanted to remove my ovaries or not. I chose not to because I'm just terrified of the long-term implications of that. I just stopped in the injections last month and I want to see if my periods return. I was diagnosed 42 and 46 almost 47 now.
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SK. I just returned my progressives!!! I felt nauseous when I was wearing them. So I do the same thing. The 'ol move your glasses right down your nose!!!!
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Tres,
I chose an Ooph because my periods came back with a bloody vengeance! lol And there is no way to tell if Tamoxifen is working. I wanted to keep the uterus to preserve the structural integrity of the lower abdomen, so no hyst. And I thought Tamoxifen was the big evil....until I had the Ooph and tried AIs. Ugh. Horrible horrible reaction. So I am still on Tamoxifen.
If I could do it ALL over, I would keep one ovary. Here's a little TMI but sex after an Ooph while on an anti-estrogen is HORRIBLE. Painful, bloody, etc. At least it is for me. And there is nothing under the sun to make it better. I've tried everything, prescription and non. That may not matter to you, but there was only one person on this board who mentioned it when I was making my decision. Therefore, I thought she might be an a unique situation.
I was also 95% ER+ so knowing what I know now, I think I could have some estrogen and it not hurt me a bit. For instance, my Onc wanted me to keep my ovaries and just keep having periods and NOT suppress the ovaries. He was confident Tamoxifen would do its job. (I, obviously, was skeptical.) Women go on to have babies etc after ER+ breast cancer.....with no recurrence.
So what does that mean? Looking back, I think while in the midst of it all, I got a little too wrapped up in the kitchen sink and forgot I have the rest of the house to live in. (haha...I bet you missed my horrible Metaphors here people! :P) Anyway, I wish I would have at least waited a year while on Lupron to really decide if no ovaries was quality living. Or at the very least kept a single ovary.
That's my experience. Pros, ovaries are gone no ER...maybe no recurrence. Negatives: sex sucks, skin gets old and papery, large percentage of muscle tone is lost, heart protection is lost, brain impact, etc.
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my MO pays a lot of attention to my long term quality of life, and In particular for me because we caught my cancer soooooo early (yay!) she doesn't want to over treat. She's always worried about over treatment. She said that tamoxifan carries the same risk of stroke as birth control pills, and that since I was on the pill for over 20 years my risk was very low. So for me, so will try tamox instead of an AI. She said she thinks I am very far away from menopause. She thoughtsex might be less painful on tamox than an AI. I have been warned that sex will be painful. Unfortunately she also warned my husband who is now terrified of hurting me and we are trying to work through that. I'm so glad we have Been together so long and married so long that we can have those kind of discussions...but In the back of his mind there's a tape playing that says he's hurting me...how do you deal with THAT?
My appt with my OB is next wed. He delivered both my children and handled both of my misscarriages and has been in my life for 15 years. I very much want his perspective on the oooph and will share next week.
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Tres,
Looks like you have a handle on it.
How do you deal with the "I don't want to hurt her?"
Honestly, devour him. You know what I mean. Get wild and cra cra. He'll forget.
Also, sex with Tamox and sex with an Ooph are two DIFFERENT experiences. Totally. I had sex on Tamoxifen just fine. Not so much with the Ooph.
In fact, I am looking in to premarin ... estrogen for the vagina!
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thanks TonLee for your honesty...that is exactly why I decided to "test drive" menopause with Lupron instead of an ooph. Plus even with the ovaries gone you still produce some estrogen(if very little) from the adrenal glands, fat etc? I think that's what I think I read anyway, someone correct me if Im wrong. I cant tolerate the AIs either, gave it my all but I was a wreck (vertigo/joint pain so bad I could barely walk) I know there is a slight statistical advantage but I cant live in extreme pain everyday. So I take my Tamox, stopped the shots and hopefully my ovaries have slowed down with age!
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I want to thank you all for the very honest and candid discussions on all of this!! It is sooooo helpful. I really like knowing all of this for when my big decisions have to be made so again thank you thank you thank you!
Now new question different topic. I was told to try a multiple vitamin by my nutritionist. Anyone have a good multiple vitamin to recommend? When you look at the shelf it is overwhelming geez! Thanks
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