Stage IV NED crew : lets support each other
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- Cafelovr, I really don't have any experience but I hate you are so worried. At least if they got them off and they were precancerous that is a good thing. Wishing you nothing but the best.
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Cafelovr, I echo Kandy. Just glad that the moles have been taken off. please ask for a thorough examination of your whole body to hunt down any other moles just to be on the safe side. Hopefully there are no others but worth a check. another thing for you to keep on your radar, as if you do not have enough to deal with. Sending support for you. Hope you are able to talk to your oncologist about this development to seek professional advice. Boo.
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Cafelover-I had to have two moles removed. One came back fine, one was what they called atypical. I went back and had it fully removed. They told me that they are not surprised when BC patients show with skin issues, but that as long as I get checked every six months I shouldn't even think about it-problem solved! In fact, if I go through I think three six month checks with nothing else, I would only need to go every year. BTW - I have a lot of Irish so most of my family has had freckles, etc scraped off.
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I'm Irish and German. Very fair skinned...burn easily. I avoid the sun whenever possible. Screech, how did they remove your moles? The two they removed was by scraping, but they did not get clear margins, so they need redone as well as remove a couple others. I'm wondering if punch biopsy would get the whole thing (around and below).
Ugh.
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Cafelover
You and I have much in common. I am now 8 years NED after liver and bone mets. My oncologist was also very aggressive with my treatment. (I had mets from the start). I too am a poster child for Herceptin as it has held me tight in this great position. AND, I have had an issue with cancerous moles. I had a sarcoma removed from my leg a few years ago. She said it was one step down from melanoma. That mole was just flat and very dark but she picked up on it right away. Now I have an atypical one on my back which was biopsied and I am getting removed in September (after the summer). Melanoma and BC are associated. And I have it in my family. My dad is full of basel cell and my mom had melanoma. Go figure, we are all 100 percent Italians. I get checked every six months and let them take off what they feel needs to be biopsied. Don't let it get you too worried. Just have them take off what they need. Best to get it early. I was supposed to go in next week but I just got back from the Dominican Republic on vacation and well... I am very tan. I know I would get in trouble so I put it off until September.
Jennifer
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Jenn,
I've always looked up to you! You are like one and a half years ahead of me. You continue now to give me hope!
How do they biopsy your moles, scraping or punching? One came back severely atypical and the other was moderately atypical.
Thanks, Linda
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Cafelovr-they scraped them to biopsy. One came back "no problem" the other was atypical. They then cut that one out-it required two stitches and you can barely see it. They told me they got clean margins on it. It was a quick out-patient appointment!
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Hi Linda
Aww Thanks. My biopsy was a scrape. Nothing but a bandaid and some Vasoline for a few days. When they remove the whole thing it will be a punch with some stitches. My current mole situation is atypical but they didn't tell me how bad just that it had the potential to turn into something nasty. I think it is just something to keep on top of and check ups every six months are a good way to do it. I really dislike getting scraped and poken nearly every time.
Jen
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Somehow the doctors and all their employees can be 15 minutes late but you can't? True the material can deteriorate but surely there was a way to make it work for you. So sorry you had to wait . CDS
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I have 2 new scrapings that look like a dime-size cigarette burn. It's sore and oozing. I'm letting air hit hit, but it's so sore. I guess I'm just in a pity-party mood.
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Linda
On my scrap they told me to keep vasoline on it and keep it covered. Maybe try that. I had minimal pain and oozing.
Jen
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CLEAR MARGINS!
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What a relief, Cafelovr.
Car2tenn, I think your comment about the 15 minutes was for me? Thank you. I needed someone to sympathize! I knew I was behind schedule that day, but I didn't know about the tracer degrading. From now on I will leave an extra hour cushion. The radiology nurse said I could have had her access the port to inject the tracer, and then have gone to the lab for blood tests later. But I don't like that idea because the VAD nurses at the lab are much better at port access, and also it would mean two pokes and waiting for a second application of numbing cream to take effect. I think the VAD people should pay attention and expedite people who are scheduled for a nuclear scan.
So I had the rescheduled scan and it is still inconclusive as to whether there is progression. TMs popped back into normal range, though still higher than my usual. So no treatment change, more wait and see.
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Shetland - also had a recent inconclusive PET So we are waiting and watching. Frustrating - I am with you on that one. Have a good 4th
Nel
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How was yours inconclusive, Nel? My last two reports mentioned one area in the liver with "very mild activity...with a corresponding low density lesion seen on the CT...which appears to have increased slightly in size." The SUV was not very much higher than normal. (There are always lesions that show up but have no activity; i.e.dead tumors.) Even my onc said the most recent scan was supposed to tell us whether something is going on, and it didn't. She was glad to see the TM back in normal range, while acknowledging that it is still higher than my usual. She asked how I felt, and I said I felt fine except for the usual Ibrance fatigue, and wasn't having pain. That clinched it for just watching. She also said that having my blood test when I was coming down with a cold could have raised the TM on the test last month, which was the out-of-normal-range one. Of course that doesn't account for the upward creep in previous months.
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Shetland,
An area lit up,rib was fractured, but unable to determine if fracture was due to bone mets or something I did (moving some furniture) with weakened bones due to chemo and osteopenia. My tumor markers aren't reliable so it is wait and watch.The pain/discomfort has gone away so the thought is just a fracture with weak bones. Doing next PET this fall
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Ok, Nel, it sounds encouraging. Take care.
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Hello everyone - has anyone ever had their oestrogen level taken? I have just been moved onto Faslodex, and my onc took oestrogen level as a bench mark before the first injections. it came back as ?50 which he says is an assay way of reporting the level is significantly under 50. Googling shows that level for post menopause woman is 30 or under. Is under 50 good or still high? I'm way past the menopause so want as little oestrogen as possible in my body. Anyone got any tips on how to lower levels?
Any thought appreciated, thanks, Boo.
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Not to sound dumb or anything, but I've never heard of oestrogen. I am post-menopausal after chemo and hysterectomy, but I still take Tamoxifen. It will be interesting to find out...
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Linda,
Oestrogen is the British spelling of estrogen.0 -
I have had estrogen levels checked, at least twice that I was aware of, both postmenopause. Once while I was on Femara, levels were appropriate for postmenopausal. The next time was while on tamoxifen. Levels were high at around 70. Estrogen in the blood tends to be high with Tamoxifen as I understand it because Tamoxifen binds to the estrogen receptors leaving more estrogen to float around.
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Oh! Thank you...:)
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Thanks Heidi, that is interesting...I have just been taken off Tamoxifen so maybe my oestrogen (yes cafe, I am in the UK and that is how we spell it!!) was high from that and hopefully will come down a bit over the next several months. Second loading injections of Faslodex today...hope the new regime bring those CA15-3 markers down.
This thread is great. You are all so helpful. Thank you.
Boo
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Boo, I'm sending positive thoughts for your new treatment!
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My latest scan is about the same, a little ambiguous, but TMs went down some more. I'm feeling more optimistic, like I can just continue holding steady.
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Boo! Got it...You're always in my thought!!
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Hello All- I have been reading posts for awhile now! I am not aure if NED or not aa my onc was reluctant to use the term...but she also doesn't like the term triple negative. I am also PDL1- and BRCA 1/2-. So in April 2016 I was diagnosed right out of gate as Stage 4. Just had another PET scan two weeks ago after only 10 taxol treatments the scan showed no cancer so I have been moved to a maintenance plan, three weeks on one week off. Is this NED? Will I really be on chemo forever? Or in a perfect world could I be gradually taken off chemo...thoughts and experiences PLEASE! !! THANK YOU!!
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nrsteph -- If your scans and markers all show to be normal, then I believe that would be considered NED. While you may get medication breaks if the med is doing too much to your system, unfortunately, the reality for most of us here is that we will be on some type of medication for the rest of our lives. Whether that is chemo or an AI or something else depends on our individual cancers and doctors. But it is a dance with the one who brought you type of scenario often; so, if chemo got you to NED, they may keep you on it or something at least.
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Sure sounds NED to me. I have been NED since May, 2010. I continue to take Herceptin, Zometa, and Tamoxifen. A while ago, we talked about dropping Herceptin, but about a year ago, my onc said not to rock the boat. If it works, just leave it alone. I have to admit, I worry about developing an immunity against it!
Congratulations! Enjoy your affair with NED!
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You go Cafelovr! And everyone else too! Just had my quarterly blood work and all still appears well........dare I dream???
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