TRIPLE POSITIVE GROUP
Comments
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Merry Christmas to everyone! Sorry I am late. I hope you all had a wonderful holiday.
Rozem...sorry you are in the hospital. I also had excessive bleeding during my periods for the first two months of chemo. My dr had no clue. It is good that you are there and can be seen to rule out anything serious.
Lago-did I hear you have a new job? Congrats!
The linkys were super funny.
Tonlee- I am so glad everything was ok. I have been following you on here and was so worried. I also have been having lower back pain and my onc ordered a pet two weeks ago for Jan 3. But, I am thinking the pain might be from the stress on my lower back while sitting up (while sleeping) after surgery. I do not want to get another pet scan unless I really need it.
I am just glad you are ok:)
I am glad to get the holidays over and I am ready to move on to 2013.
This last year has sucked:/0 -
Bren seems most who have the BRCA gene get it early (like before 40) and are triple negative. Not everyone but more common. Also more than 1 person in the family usually has it.
Jennifer404 no new job. Just a onsite freelance gig for at least a month. I'll probably be working next week but not sure if it will last longer. I hope it does. Commute stinks but everything else is good. I can deal with the commute since the stress level at work is zero.
Rozem I hope you're OK. Waiting to hear an update.
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Forgot to mention I took a double dose of ESD today. I took my pills early then about 30 minutes later I looked at my pill container… and thought it was Thursday. I assumed I didn't take them. Seems I had no issues or penis sprouting.
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I do remember having the Braca done--but no memory whhat the Dr. said--well I probably wasn't listening
Rozem I hope they get u all settled with this period thing-I would hope they'r know by now--just let us know, I know u will.
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Lago, I once took 2 Ambien by accident. Thought they were my diarrhea pills, i took them at 10. I made it to the living room couch, they kicked in, I went out like a light, I remember putting my coffee down, (um no, the big spot on the floor meant I didn't even do that! LOL) and I woke up at 5 pm. LOL Luckily, they put me out so deep I didn't need the diarrhea pills- can you imagine if I didn't sleep so deep!? LOL
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Lago. I'm sure I've taken a double of the Arimidex too since it looks similar to my heart/bp pill.
I'm really careful now!0 -
hi guys
finally back home and after a much needed nap wanted to post an update. The gyn on duty did an internal (beyond gross let me tell you) and said everything looked fine. How can she tell ? what the hell could she see with all that blood? Most likely uterine lining thickening and thats why the excessive bleeding - just like what you said tonlee. I am going to call my gyn tomorrow and schedule an ultrasound just to see if there is anything else going on. Shore1 - I am 14 months past my last period, 12 months past last chemo. So now I guess the decision will be shutting these puppies down or taking them out. Funny, no hot flashes at all the past few months, makes sense since i was obviously kicking out of menopause. I am really depressed about this, I really thought that was it, no more periods. Not good when you are 95% er positive. I know im on tamox but thats a lot of trust in one little white pill.
hope everyone had a nice christmas and thanks so much for all your posts
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rozem, thanks for the update. Sounds like a pain in the ass but, as we suspected, nothing serious.
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Hi Rozem,
When I had all the excessive bleeding my gynecologist at the time did an internal ultrasound (IIRC). I think that was how she basically diagnosed it as being a fibroid and then did a surgical procedure (general anesthesia) to remove it.
I never had any problems after that but I don't think it was too much longer before I went into menopause.
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Happy holidays to all!
I went on a holiday with the family and kept Tonlee in my prayers. Praise and thank God!!! Seems everyone held their breath for that one. Full of blood but no rbc's? Can it be myoglubinuria? Please keep us posted.
Rozem, hope that bleeding would stop. I think it's from the endometrial thickening from Tamox. Just make sure it doesnt get so far out of hand as to make you anemic, for now at least.
As for me, onc decided to postpone my third herceptin only infusion. My liver enzymes went real high. Will try again on January 4th.
Let's all kick-ass (and cancer of course) this 2013!0 -
Just another day spent in the ER clawing our way back to a new normal as a result of the 'cure'...$&@?*+=#?!!!!!
Rest up and hydrate Rozem....
Question for those post the one year mark ladies. What do your onc's check for at your 3 month and 6 month check ups? I'm having my first 3 month one this week. Tumor marker tests? Clinical exams?
Any questions I should be asking?0 -
Ashla,
My onco doesn't check tumor markers due to mine were originally normal at dx.she just checks my blood work and feels for any lumps and lymph nodes...she doesn't do scanning either only if symptoms occur...0 -
Hi Jenn 404....
Have been thinking of you...
I have lower back pain too. Started wih chemo and is getting worse with arimedex.
You must be exhausted with 2 wee ones for whom to make Christmas merry .
2012 was ...as the queen put it...an annus horribilis....I'm hoping for better for all in 2013!0 -
Sherry67,
Thx...my onc told me that my breast surgeon is in charge of my breasts! I think this may be an unusual situation but my breast surgeon will be seeing me for the rest of my life. Girls, is this unusual? I see him next week for the clinical feeling around stuff. Every 6 months for 2 years with him and then yearly till death do us part.
I know my onc is still following my reaction to the arimedex after 5 mos. I was going to ask about the fact that I'm sleeping much better than I have for years lately. This is very odd since I haven't slept well since the first time I went through menopause.0 -
Rozem there are plenty of women that get an oncotype test that says no chemo. They just go on tamoxifen if they a premenopausal. They do just fine. Don't assume they are going to rip them out or suppress them.
Ashla after the first year I see my onc every year and my BS every (every 6 months someone sees me). They split it that way. I do this up to year 5. They continue to switch off but it goes to every year instead of 6 months. Most of my friends see their onc every 3 months and not their BS at all. After that it's every 6 months I think. I just get felt up and they ask if I have any breathing issues etc. I was getting liver scans because they initially saw something (just cysts) but I'm done with those. No tumor markers. Both my onc and BS feel they are unreliable.
So I too am one of the unusual ones that continues to see the BS. My gyno also feels me up.
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Thanks ladies for the info about follow up care. I was wondering about that just the other day. The last time around it was only my gyn that did any blood work for the first couple years, everyone else pretty much cut me loose after my bmx and recon because they said I was "cancer free". I will have to ask to see who will be in charge this time around.
Lago - they are doing the BRCA test because I was 41 at my first dx.
Rozen - hope you can get answers soon.
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Thx Lago!
So it's basically a talk session asking about unusual symptoms etc. And the regular bloodwork.
My new MO has never really touched me. Forgot.My gyno felt me up too. You reminded me that she advised me to ask for a CD of my Mammos just in case someting comes up and you don't have access to your mammo center.0 -
Rozem, glad its nothing too bad & just a pita. I wonder if a DC or uterine ablation could help the excessive bleeding.
Ashla, I count my time from june 2011 because that was when I had an excisional biopsy, even though bmx wasn't until august 2011. My herceptin ended 11/7/12 and now im told ill see MO every 3 months of at which time general blood work but no TM tests because MO says they are unreliable. Ill also get physical exam, but that's it - no scans. I see BS every 6 months and he does a much more thorough physical exam than my MO. From what everyone is saying, this all seems pretty standard, but im still having a hard time with feeling like im set to drift in my own with no doctor monitoring me much. Like what Bren said - I feel like they cut me lose.0 -
Shore 1,
I'm feeling the same way about being cut loose . I couldn't even think of a good list of questions to ask . To make things worse...I made both appointments this holiday week becaue I'm leaving NY for3 mos and each of my MDs decided to go on vacation. I'm seeing a completely new MO. MyBS rescheuled for next week.
It seems to me that it's really up to us to be very aware if our bodies . Wish we could take some time off from it but I don't see it.0 -
Interesting how everyone's follow-up is different. My final (#10) Herceptin was 11/2011 and my onco sees me every 3 months for bloodwork and breast check up - she is so thorough checking for lumps (even though mine was never palpable). Since moving back to Florida (after all my treatments), I really don't have a BS. I had one who removed my port but he left the practice and I haven't found another one yet and guess I need to find one). I have a feeling my next check up in a few weeks might be my last 3 month and then I move to every 6 months.
Arlene
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I was diagnosed earlier than some of you and just had my post-Herceptin PET scan. I delayed it due the scheduling of my exchange (Feb. of this year) and I wanted a very clean look, since my first two PET scans were pre-chemo but post BMX, and post-chemo but also post replacement of my left TE. Now that I have had this scan and normal markers done at the same time (CA 27/29 and CEA) my MO is moving me to every 6 month checks from previously having checks every 3 months. It has been more than 2 years since dx. I see my BS annually, and had I not just had the fat-grafting done I would have moved to annual PS appointments also.
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I saw my MO every three months for the 1st year PFC, then every 6 months, this last November (2 years PFC), he said he didn't need to see me for a year, as long as I saw my PCP or BS within 6 months - so his rule as that I need to see a doctor at least every 6 months. I see my BS 1 a year since surgery, he's in charge of the mammo on the good breast, but he said that this year will be the last year he has to see me (which will be 3 years from my UMX). My MO does blood tests, including cancer markers, and a physical exam. My PCP is doing most of the follow up with my AI SE's. Of course my MO says that should I have any questions or concerns, please call and make an appointment.
Special K - I didn't have any scans post treatment, my MO doesn't do them unless you have symptoms, hmmmmm, I wonder why the difference in treatment.
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lindakr - honestly, I think it is because my insurance will pay and my onc has an on-site PET scanner. He is a doc that likes checking, it is his nature so he does quarterly tumor markers too. I think it is about a 50/50 split - some docs do markers/scans and some don't because of the reason you gave. There does not seem to be a standard in regards to follow-up care.
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Had my first mammo since diagnosis on Nov 5th. BS said to call in August for a Nov 2013 mammo,so that means I will see her once a year,my last herceptin is February 6th at which time I will see my MO. My MO said I will need to see her every 6 months after. You all are seeing your MO and BS a lot more than me ,that kinda of scares me. I was happy about it until I read about the follow up care others are getting..I think maybe it is because of my age ?? Anyway I feel great,had my herceptin at 8:30 this am ( only 2 more to go ) and then came home and shoveled the drive. My only really BIG CONCERN is this darn Tamoxifen vaginal discharge. I sure hope it subsides ..
My very best wishes that 2013 be filled with Good Health and Much Happiness for all. HAPPY NEW YEAR!!
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Eileen....
Perhaps it's because You had an early stage small , lower grade tumor with no node involvement...yippee for you . You sound like you're racing to the finish line. I was so pooped by anxiety over a nipple discharge and my first post surgery mammo, that I thought someone would have to push me over the finish line.
Healthy, happy New Year to you, yours and to all my dear friends here. Prosperous wouldn't hurt either. Just saying.0 -
Hello, all. I hope you're having a restful week (especially rozem and TonLee, who clearly deserve it!).
I'm hoping you all can enlighten me a bit about the different chemo regimens for us triple positives. The first MO I saw pushed really hard for six rounds of dose-dense AC followed by four rounds of dose-dense Taxol. He was a complete jerk, though, so I don't want to agree with him, and I've heard rough stuff about Adriamycin. I notice that lots of you did TCH rather than AC-TH. Does anyone here know what the differences are between those two regimens, or when one is better than the other?
Of course I'll ask my new MO the same questions, but I don't see her until Jan. 10. I'm in the information-gathering stage; the more I can find out now, the less I'll obsess about it over the next two weeks.
Thanks, ladies!
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Eileen, I have the same schedule as you, every six months for MO, annually for BS. And I was stage 3.
Byron's, AC is a harder regimen, especially with potential side effects to your heart. I think when cancer is caught earlier, a lot of mo's opt not to use it. I think it is pretty rare to do 6 cycles. Most mo's think you get the same benefit from 4 tx's. the adryiamycin makes it more likely to get heart damage from herceptin too. And it makes it more likely that your heart will not improve when you finish herceptin. My cardiologist told me that I can walk around with a decreased ejection fraction, but not cancer though. The decisions we have to make aren't easy.0 -
bryona - there also seems to be a geographical trend with east coast MOs choosing one chemo regimen, west coast the other. Dr. Slamon, the doc that brought Herceptin to the market, prefers TCH because of the cardiotoxicity of Adriamycin. My doc never mentioned the AC-TH choice - he was TCH from the beginning, I am assuming for this reason.
Here is a link from the Genentech website showing study results:
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Bryona, I had AC x 4 and then Taxol with Herceptin x 12. The Herceptin then continued every 3 weeks for a year from when it started. It was very rough - especially the AC. My MO never mentioned any other regimin, and at the time, I just wanted it started immediatly. It was only on these boards when I was mid-Taxol that I started learning more about the other options. I was early stage, and node negative, but Grade 3 and 41, and my MO said my treatment would be aggressive. That's what I wanted. In any case, I'm ok with what I got and I'm fine so far. I hope my heart is ok in the years to come, but honestly, nothing scares the shit out of me like BC does, so I'll just exercise and eat healthy like I have my whole life & hope for the best.
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Bryona: I had all my treatments in NV and there was never any discussion about what treatment I would get and knowing absolutely nothing and no time to research, I went with my my onco and BS advised which was TCH. From everything I've heard TCH is the best treatment for us Triples and I was early stage too with no node involvement. Finding an onco you like is so critical. I loved mine and it made it so tolerable each time I went for treatments.
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