TRIPLE POSITIVE GROUP
Comments
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fluffqueen what does the metformin do for us? any side effects? I have never heard of it.0
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Pek,
I wondered how the lining was supposed to shed...it makes sense...better out than in I guess....I didn't start cycles until 17, so I probably won't hit menopause naturaly for another decade at least...most of the women in my family hit late 50's.
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Hi, check out the Metformin topic page... i will bump it...
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I just talked to my OB about periods since I just had my yearly checkup. I had one period during chemo (Feb) and then not another until just recently (been taking Tamox since July). The OB (whose wife has triple positive breast cancer and sees the same onco as I do) told me that it is just fine if you have a period during Tamox - it's just that some people do not and that's fine, too. He said that it's the intermittant spotting that you need to report. I told him the recent one was horrible and he said if they continue to be, we can talk about ablation because I can't stop them hormonally. He told me to keep a record of how often, how long and how heavy each one is so that if I have to call him, he can get as many details as possible to make the best decision on how to treat me.
I think maybe some of it depends on how close a woman is to menopause while taking Tamox. I am 44 (43 at diagnosis) and as far as I know no where near menopause. But that's just speculation on my part.
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Arlene I haven't posted on this thread before but I searched for 'macular degeneration" and this one came up. I know it's a couple of months back now, but I was at the eye drs. this morning because I am having problems with one of my eyes. I had an eye exam in Setpember, part way thru chemo, and everything was fine, now this morning they tell me it's macular degeneration just appeared. BUT, I haven't begun radiation yet. I finished chemo a couple of weeks ago and have my first 'setup' appt this week for rads. I am pretty upset about this as he thinks it might be 'wet' too. I have to see a retinal specialist this week now. So, is this a SE of chemo or just 'one of those things' age related nonsense? He told me they can use Avastin to treat it - really not keen on that either. Has anyone else had these kinds of eye problems?0
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Hi everyone,
I had my lumpectomy and SNB surgery on Friday and came through well. Today I'm having a "roll in a ball and cry" day. My husband and dog seem to be tag teaming in giving me cuddles :-)
Will go back on Thursday to find out if my margins are clear and if my one sentinal node was clear. If either were positive my surgeon wants to go back in on Friday and take more breast and nodes...I know there is research showing that taking more nodes has no survival benefit but the research wasn't done in triple positive women from my understanding (?) so if I choose to leave the nodes I'd be taking a big risk I think? Anyone have more info on this for us +++ women?
regards Jenn0 -
Hey Grimbol: Welcome to the blog. Great group of ladies here. I actually have the dry MD and I'm thinking the Eye Vitamins are beginning to help. My onco is questioning if I really have MD so guess I'll get a second opinion. I do know my eyes really started being weird during chemo so I sure don't know. I do have an aunt who is 86 and she has had it for 30 some years and was driving up until just a few years ago but not at night. Who knows if the radiation really caused it or if it would have happened regardless. I would ask them to take precautions with your eyes and ask for or bring your own eye guards. I assume such an animal exists.
Hi Jenn and welcome! I wish I could help but I'm sure someone here will have some advise for you. Lots of really knowledgeable ladies here. Good luck to you!
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Bucky and Judy....here is a link to one explanation of the metformin study. It is in stage 2 so has made it paste the first two. Doc felt ok prescribing it since it has been used for so long. Said it shouldnt do an harm other than the initial potential gastric issues. I just started and I have to build up. Not too bad so far.
http://www.cancer.gov/Common/PopUps/popDefinition.aspx?id=CDR0000045866&version=Patient&language=English0 -
To add, it started in Canada and a bunch of places in the us just were aproved to start it this year. I got booted after they thought i was the perfect candidate. If the tumor wasnt in the lymph nodes, it had to be over a cm. Mine was .8 x .8 x 1 cm. In the long rum, this might work out ok, since I know I have the real thing now and not a placebo. I have the record keeping forms, so I am going to keep my own records just in case anyone would ever want them.
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Jenn that was just one study so it's not quite standard care to not remove more BUT it does look like standard care is moving in that direction. I would check the study again. I'm not sure if HER2+ is an issue because they really don't understand how HER2+ spreads. There are cases where it does spread but the nodes were negative (granted it's possible they might have missed some micromets in the pathology).
You can still refused to have them remove more nodes. If they find micromets I would question this since you will be having radiation anyway. Lets just assume for now that you will be all clear. I mean they thought I would have micromets and took 10 on the cancer side without doing a SNB. My BS was pleased but quite surprised I didn't have micromets. He is also surprised that I have LE too.
"The new results do not apply to all patients, only to women whose disease and treatment meet the criteria in the study.
The tumors were early, at clinical stage T1 or T2, meaning less than two inches across. Biopsies of one or two armpit nodes had found cancer, but the nodes were not enlarged enough to be felt during an exam, and the cancer had not spread anywhere else. The women had lumpectomies, and most also had radiation to the entire breast, and chemotherapy or hormone-blocking drugs, or both.
The study, at 115 medical centers, included 891 patients. Their median age was in the mid-50s, and they were followed for a median of 6.3 years.
...snip...
It is not known whether the findings also apply to women who do not have radiation and chemotherapy, or to those who have only part of the breast irradiated. Nor is it known whether the findings could be applied to other types of cancer."source: linky
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Achpurple,That's good to know, thanks. I'm a little concerned because I spotted for three days early last week, then nothing for almost a week, and then BAM!
I'm reading up on the Zometa study right now....though it says young women who are in chemopause benefit the most, I may be talking to my Onc about it. Can't hurt. Right?
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I read the Metformin thread and have been looking it up on the internet. Sounds very promising. I'm going to ask my onc about it.
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Judy - I'll be interested to see what your onc says about it.0
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Hi ladies just catching up a few pages back and noticed the discussions on AI & Tamoxifen. From the start of chemo I told my Onc I did not want to be on Tamox at all. I am 42 with endometriosis and a history of abnormal but non cancerous pap smears since I was 30. I have a family history of colon and uterine cancer. After chemo He started me on Aromisin and I was allergic and then Femara but the SE were much constant nauseous and hair falling out after 1 dose. I do have my hormone panel run every herceptin and I am still in post meno stage. My FSH has ranged from 126 to 60 now back at 99. I have not had a real period since 2 nd chemo but had some spotting a few weeks ago which also coincided with my change in FSH and ironically the hair on my body stopped growing. I am awaiting the results now for CA125 and uterine biopsy. All taken as a precautionary. It's funny though as soon as I told my GYN about the bleeding his first statement not question " your on tamoxifen." I think it really is luck of the draw with the drug, but I knew for me the risk was to high given my history. At my next H my Onc is going to start me out on Zoladex. I also take 2000 IU of D 3 a day along with Calcium and a hefty dose of Prunes:).
Lago I am curious about getting blood work done, I had cancer on left side and developed mild LE on right, which swelling is why I am awake right now. I have a power port and I am scheduled for a muga in 2 weeks. I do not want blood draws on either arm how else can the tech insert constrast dye? The refuse to use my port. Also how else will blood draws be done once my port is removed? Is there a preferred area? Thank you in advance.0 -
nmoss you can go and get your port accessed at the chemo room before you go get your muga. That might help. I couldn't use my port at my liver scan because it wasn't a power port. I had them use my foot. I also had them use my foot for IV at all my reconstruction surgeries with no issues. When I had my colonoscopy they used my port.
BTW I think they knew I was going to walk out if they didn't use my foot at my liver scan. I did call ahead of time to let them know that they would be using my port or foot (when I scheduled the appointment.
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Thanks Lago I will have them access in infusion center.
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Thats what I always did and it was as simple as could be. Did not want anyone else accessing my port, even if they were trained, Since I really liked the Infusion Center staff, it was a nice part of the day to have my port accessed. Also, be sure and have the Infustion Center do what they do afterwards to the port.
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I gave the nurse at my colonoscopy the card for my port. It had all the direction on it including what to flush it with when you were through. When I had my liver scan I just had my chemo nurse remove the needle (since they couldn't use it anyway).
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With all the iv antibiotics I have had, I feel like I am a pro at infusing and flushing. Just can't acess and de-access. And don't want to!
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Well, I left a message for my onc to call me to talk about possibly adding Zometa. I'll keep you posted about what she says...
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Went to see my Onc today....asked about Zometa. He said the study presented in San Antonio this last week is actually a couple years old and since then, there is a second phase study using Zometa in the same way that shows absolutely no improvement in any way (for recurrence/survival benefit).
In other words, the results can't be reproduced, which means the study's methodology was flawed. He said he wished it worked the way the press is hyping it because he'd get me on it asap. But lots of Oncs jumped on the Zometa train two years ago after the first study, and now they're back off.
I told him our newspaper said it was the new "standard of care" and he couldn't believe it.
I'm anxious to hear what other Oncs are saying.
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Here is a good place to read about the mixed results....
http://www.cancernetwork.com/conference-reports/sabcs2011/content/article/10165/2004594
The last paragraph:
"There were four presentations on bisphosphonate therapy, and unfortunately, one is more puzzled than ever," commented Harold J. Burstein, MD, PhD, assistant professor of medicine at Harvard Medical School and medical oncologist in the Breast Oncology Center at Dana-Farber Cancer Institute, Boston. "The two largest studies showed no compelling gains; the two smaller studies suggested more benefit. It will take more analyses to help us understand whether or how to use these drugs to prevent breast cancer recurrence."
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I am seeing my onc today also and plan to see what she says about the Zometa. It will be interesting to hear her take.........
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Great news!!!!! (those who have followed what was going on with me)
I went to the Mayo yesterday to get a CT scan and I had my appointment with the general surgeon today. He determined the lump is actually some calcification of the carotid artery on my left side. It's on the outter part of the artery so there is no danger, if it were on the inside then there would be restriction of blood flow but it's on the outside around the artery. After he said this he said I needed a ultra sound of that area just to make sure. He was able to get me in ASAP. On the way home I got a voice mail from the doctor with the results. He was correct, it's just calcification and nothing needs to be done. He said it probably was the result of my chemo. Wow what a relief!
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Great News Nora!!!!0
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Wonderful news!
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Well, I'll be asking about Zometa when I'm done with chemo and start Tamoxifen. I sympathize about "periods with a vengeance." Ditto.
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Nora,
Thank god!! WOO HOO!! So happy for you.
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Thanks everyone.............I was stressing sooo bad. The other good news is how I have always "wondered" about mets etc. Well he said the CT scan of my head and neck were good. So at least for now I know that is clear. It's amazing what things like that does for the spirits!
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yeaaaaaah nora, glad to hear the scan was good.
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