TRIPLE POSITIVE GROUP
Comments
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Lago -- glad to hear you're done with the liver scans.
Obsessing over something (ha - what else is new ) and am wonderingvif anyone has any thoughts on it. I had pretty bad lower back pain right before dx. I don't remember it bothering me at all during chemo. But now, 8 months pfc, my lower back aches again. I had an x-ray before chemo that showed degeneration and a bone scan near end of chemo that didn't show anything in my back. Could it be mets in spine that was temporarily feeling better because of chemo? Going to ask MO of course but I can't stop thinking about it -- mostly worried because of that time during chemo when it didn't hurt.0 -
Shore when something hurts of course we always have a concern "is it mets." First of all you are still doing Herceptin so that's in your favor. You had the issue before so my gut says that's most likely what it is. I bet during chemo you were putting less stress on your back. I know this summer I kept getting headaches. Yeah for a brief moment I thought mets… but then figured I must be grinding my teeth. Started wearing my night guard and all is good. But of course check with your onc.
SpecialK I forgot to mention what an awesome thing you did for your friend. I'm sure she know's you're a keeper.
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Lago -- glad to hear you're done with the liver scans.
Obsessing over something (ha - what else is new ) and am wonderingvif anyone has any thoughts on it. I had pretty bad lower back pain right before dx. I don't remember it bothering me at all during chemo. But now, 8 months pfc, my lower back aches again. I had an x-ray before chemo that showed degeneration and a bone scan near end of chemo that didn't show anything in my back. Could it be mets in spine that was temporarily feeling better because of chemo? Going to ask MO of course but I can't stop thinking about it -- mostly worried because of that time during chemo when it didn't hurt.0 -
Lago -- glad to hear you're done with the liver scans.
Obsessing over something (ha - what else is new ) and am wonderingvif anyone has any thoughts on it. I had pretty bad lower back pain right before dx. I don't remember it bothering me at all during chemo. But now, 8 months pfc, my lower back aches again. I had an x-ray before chemo that showed degeneration and a bone scan near end of chemo that didn't show anything in my back. Could it be mets in spine that was temporarily feeling better because of chemo? Going to ask MO of course but I can't stop thinking about it -- mostly worried because of that time during chemo when it didn't hurt.0 -
SpecialK, the story about you and your friend is so touching. Thanks for sharing. Misty eyes.
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shore - did you get steroids during chemo? Could be they helped with the back pain if you got them.
Yay for no more liver scans lago!
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sol - she is in Sacramento, but what a sweet offer! And, yes, we are all in this together! She has been amazed at the support we give each other on this site - she is aware of what you all mean to me!
shore - I have a degenerative issue at L 4/5 that pre-dates BC by many years. Interestingly, it didn't hurt as much during chemo either, so it may be an anectodotal pain relief that the drugs provide, not sure. It bothers me more now too, don't know if that makes you feel better.
lago - thanks - it is nice to be thought of as a keeper! Yay on no more liver scans - must be such a relief for you. I am not sure how you stayed calm about that all this time!
bcbarbie - I learned long ago that it is not the quantity of friends, but the quality - she is the best! It is hard to understand why so many of us have friends or family who leave or disappoint us when we are dx'ed, and I feel so fortunate that this did not happen to me - I find it heartbreaking when I read about it happening.
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Shore
I have had a history of lower back pain, including sciatica pre and post BC. 4 weeks after surgery I had a holiday, before chemo. I had pretty bad hip pain which I now know was related to my back. I was convinced it was mets. Then the chemo began and I dropped half a stone and suppose was so preoccupied with SE's that I cant say I noticed back ache.
During Herceptin only it was off and on. I decided that the worry was affecting my quality of life and I was referred for a MRI. I wanted to know if I had a bulging disc and basically get to the bottom of what was going on. The symptoms could be intermittent.
Results: clear! The only thing the specialist could see was a slightly darker looking are of muscle surrounding my left lower back. He put this down to less oxygen to that supporting muscle and the culprit: I wasnt moving enough. A large % of back issues self resolve or are improved with an exercise regime.
So, huge relief and I began to walk every day to the point where I sweat. I have actually had stiffness and some pain in that area, and then as I have progressed on the walk it has either eased or disappeared. I was also given some lower back stretching exercises to do at home.
On weekends when I cant go and walk as easily, I find it is worse. I need to lose some weight and step up with more exercise but for now the 3 miles a day or so is all I can manage until I get further advice fron the lymphedema clinic.
Hope this helps. I was told (at42) that this was a common age group to have back issues and that strengthening was the key (as there was nothing wrong with my discs )
Liz
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LAGO--Good for u all the way around--u r surely a trooper and giver.
Shore I never had back problems and I'm much older, now I have them but it's no doubt something stupid, I' not worried about it. But Now I really feel bad for anyone who has had back problems for any length of time--wow it's hard stuff to deal with and I find myself bending over some and I never did that. My muscles are weak and I should walk more. Well talk to u'r onc. but it can be so many things.
I just noticed there's SpecialK and Kelloggs, I should have been grape nuts. Those are cute.
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Thanks for all the ideas. Yes, I got steroids during chemo so maybe that was why I felt better. When xray showed degenerative something in L-? my MO was not concerned enough to order more tests. For my own sanity, I will insist on some type of scan at my next appt end of Oct. Thank you!
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Thanks for all the ideas. Yes, I got steroids during chemo so maybe that was why I felt better. When xray showed degenerative something in L-? my MO was not concerned enough to order more tests. For my own sanity, I will insist on some type of scan at my next appt end of Oct. Thank you!
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I've been really busy lately so have just been skimming the posts. Just wanted to let everyone know I'm still in tune. I had a bad Upper Respiratory infection about 3 weeks after rads. but this week I'm finally starting to feel normal energy.
Peggy
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Sorry Peggy, that'll put u down for a while--it knocks u out. Feel better and take it easy.
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Kitchenella, feel better. Hope you're feeling stronger every day.
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Soltantio...
I wish I could translate that article. I saw my MO yesterday and he hadn't had a chance to read it completely . My understanding is that this huge study with the very best medical institutions in our country particpating...along with other recent studies.. reiterates the belief that breast cancers must be and very soon be treated in a much more personalized way. The biggest news seems to be about triple negative BC being closer to ovarian cancer than to others BCs
For us Her2 ladies it appears they are coming closer to determining which of us will benefit from herceptin.There are many studies going on right now including the one I'm in..NBREST... to refine that. They have my RNA/DNA and are following me and others who had neoadjuvant treatments.
Next week the Herceptin timing studies will be released.
Shore..
I have had much worse lower back problems after chemo, herceptin and now anastrazole. Not debilating but I feel like an old lady unless I keep active.
I asked my MO about the 2 year , 5 year recurrence timing for us HER 2 gals. He kind of concurred. He said prior to chemo treatment was mastectomy.THe women who had recurrences would typically be between 2 to 3 years. Post chemo...recurrences were delayed.
Now...if there is recurrence for us..the Her2 part recurs earlier..the ER pos part is slower growing and recurs later.
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Ashla let me add/clarify:
"I asked my MO about the 2 year , 5 year recurrence timing for us HER 2 gals. He kind of concurred. He said prior to chemo treatment was mastectomy.The women who had recurrences would typically be between 2 to 3 years. Post chemo...recurrences were delayed."
It doesn't mean that its only a matter of time when and if you recur. It means IF you were to recur treatment may delay that recurrence. The earlier you've been diagnosed the better your chances are for never having a recurrence.
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FYI the reason why posting is so slow is because they moved the server over to a cloud service. They are working to fix things.
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Lago....
Thanks ..absolutely.....Thanks to all these changes our prognosis is one of the best amongst BC patients....0 -
That article is amazing AND very complex. Folks will be studying it for a long time I suspect. One thing I got from it (I think!) is that the two 'types' of HER2+ showed up in their many results - those with low vs. high levels of estrogen receptor expression. This is from the article: "Further support for two types of clinically defined HER2 disease was evident in the somatic mutation data supervised by either mRNA subtype or ER status; TP53 mutations were significantly enriched in HER2E or ER-negative tumours whereas GATA3 mutations were only observed in luminal subtypes or ER+ tumours." LINK0
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Shore- steroids are awesome only if they do make the aches and pains go away. I have been on them for allergies in the past and wow! My back, hips all felt great. Felt like a new person. But long term, they are hard on the body.
SpecialK- you rock! What an awesome friend you are. We really do find out who our true friends are though all of this. It is true, it's the quality, not quantity. And I can Count my friends on one hand.
Lago- congrats on no more liver scans! Yay!
I got my drain out yesterday! Woohoo! No more carrying around a drain. My clothes sure do look better without it bulging out of my side! Lol!
Also, I have a confirmed date for my oncologist. This Friday at 11am. Little nervous. Hope I remember everything I want to ask him. But mostly, I hope I like him and we get along.0 -
Camillegal - my friends used to call me Kelloggs in school and of course, SpecialK was already taken! I think she got the right name...sounds like she is definitely Special!
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camillgal - you are so cute with the Grape Nuts! That made me laugh! My screen name has been a nickname for many years - given by a a friend of my DH in their first flying squadron, when they were figuring out their "call signs", like Maverick and Goose from Top Gun. It was my "call sign" since my first initial is K. I even have a bracelet with it engraved on it.
mstori - yay for no drain! Hate those things! They are necessary, but such a pain - literally and figuratively. Thanks for the compliment - I too can count 'em on one hand!
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I had never thought about the steroids during chemical possibly making lower back ache feel better. Maybe my back aches are age related & not cancer related, as im so quick to fear.
Lago, when you say the earlier diagnosed, the better chances for not having a recurrence, do you mean tumor size, nodal status, stage? I know there can be mets even with negative nodes for us her2+, so im just trying to get a handle on what's early for her2+. Would appreciate your opinion very much.
Ashla/omaz/anyone - regarding the study and two types of her2+ BC, are the two types those that are her2+ AND er/pr+ and those that are her2+ AND er/pr-? A lot of medical jargon I guess im not understanding and of course am wondering if my stats indicate herceptin will likely work for me or not. Looking forward to hearing what comes out next week and discussing with my MO when I see her mid october.
Finally, I think tamoxifen is causing leg cramps and joint aches. I know some of you take glucosimine for joints, but I see there are a few different kinds. Can anyone tell me what they take, how much, and if it helps? Im very active - walking 3 miles a day and doing lots of yoga. Look way better than I did pre-BC, but feel achy more than ever.0 -
I had never thought about the steroids during chemical possibly making lower back ache feel better. Maybe my back aches are age related & not cancer related, as im so quick to fear.
Lago, when you say the earlier diagnosed, the better chances for not having a recurrence, do you mean tumor size, nodal status, stage? I know there can be mets even with negative nodes for us her2+, so im just trying to get a handle on what's early for her2+. Would appreciate your opinion very much.
Ashla/omaz/anyone - regarding the study and two types of her2+ BC, are the two types those that are her2+ AND er/pr+ and those that are her2+ AND er/pr-? A lot of medical jargon I guess im not understanding and of course am wondering if my stats indicate herceptin will likely work for me or not. Looking forward to hearing what comes out next week and discussing with my MO when I see her mid october.
Finally, I think tamoxifen is causing leg cramps and joint aches. I know some of you take glucosimine for joints, but I see there are a few different kinds. Can anyone tell me what they take, how much, and if it helps? Im very active - walking 3 miles a day and doing lots of yoga. Look way better than I did pre-BC, but feel achy more than ever.0 -
shore - the G/C I am taking is 200mg of each, along with some turmeric and ginger and omega-3 in the dose, which is 3 gummies (of course!), and has 18 calories. I hate been somewhat hit or miss on taking it because I don't have a big enough old lady pill case to hold all the gummies! I need to devise a better plan. I did start taking Claritin about a week ago and I do think that is helping - taking one a day (24 hour dose) at night.
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I had never thought about the steroids during chemical possibly making lower back ache feel better. Maybe my back aches are age related & not cancer related, as im so quick to fear.
Lago, when you say the earlier diagnosed, the better chances for not having a recurrence, do you mean tumor size, nodal status, stage? I know there can be mets even with negative nodes for us her2+, so im just trying to get a handle on what's early for her2+. Would appreciate your opinion very much.
Ashla/omaz/anyone - regarding the study and two types of her2+ BC, are the two types those that are her2+ AND er/pr+ and those that are her2+ AND er/pr-? A lot of medical jargon I guess im not understanding and of course am wondering if my stats indicate herceptin will likely work for me or not. Looking forward to hearing what comes out next week and discussing with my MO when I see her mid october.
Finally, I think tamoxifen is causing leg cramps and joint aches. I know some of you take glucosimine for joints, but I see there are a few different kinds. Can anyone tell me what they take, how much, and if it helps? Im very active - walking 3 miles a day and doing lots of yoga. Look way better than I did pre-BC, but feel achy more than ever.0 -
I had never thought about the steroids during chemical possibly making lower back ache feel better. Maybe my back aches are age related & not cancer related, as im so quick to fear.
Lago, when you say the earlier diagnosed, the better chances for not having a recurrence, do you mean tumor size, nodal status, stage? I know there can be mets even with negative nodes for us her2+, so im just trying to get a handle on what's early for her2+. Would appreciate your opinion very much.
Ashla/omaz/anyone - regarding the study and two types of her2+ BC, are the two types those that are her2+ AND er/pr+ and those that are her2+ AND er/pr-? A lot of medical jargon I guess im not understanding and of course am wondering if my stats indicate herceptin will likely work for me or not. Looking forward to hearing what comes out next week and discussing with my MO when I see her mid october.
Finally, I think tamoxifen is causing leg cramps and joint aches. I know some of you take glucosimine for joints, but I see there are a few different kinds. Can anyone tell me what they take, how much, and if it helps? Im very active - walking 3 miles a day and doing lots of yoga. Look way better than I did pre-BC, but feel achy more than ever.0 -
"Stages I, IIA, IIB, and IIIA are considered "early-stage" breast cancer and refer to cancers that may have spread to nearby lymph nodes but not to distant parts of the body." source
HER2+ status doesn't effect stage. Pre Herceptin you would be staged but have higher risk of recurrence than someone who wasn't in the same stage. Now, with Herceptin that higher risk has gone down to slightly higher risk but I believe that is for early recurrence (within 5 years). Stage is based on a number of things including size of tumor, nodal status, how many nodes, grade, location, invasive-non invasive, etc. linky
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Just want to reiterate for all you triple postive ladies especially the younger ones...imho despite the terrible time you have had and many continue to have since DX...the future for women with breast cancer especially Her 2 pos bc has become much more optimistic in just the past few years.
Learning to live meaningful lives without thoughts of recurrence clouding our psyches daily may just become the most serious challenge we face.0 -
Shore 1
There may be many more than two types of Her 2 pos cancers but finding out which ones respond to herceptin BEFORE treatment is vital. They've made alot of progress on that already.
My mo was saying that in recurrences cancer isn't necessarily the same kind!
These new studies are leading the way to very personalized treatments .0 -
shore1 tamox definitely causes joint pain/aches. When i wake up in the morning i feel like a old lady. My fingers, toes you name it. Back pain: ditto on major back pain when i was diagnosed. So much so that i know they double scanned that area. But for me quite honestly i think it was stress related. I did feel better once in chemo but maybe that was mental because i was doing something? who knows. I am having a lot of back pain again but i am getting quite stressed about the upcoming surgery so that may have something to do with it.
I am going off tamox next week (for 2 wks) prior to surgery. I am curious to see if my symptoms improve any - i think i am going to break and ask my onc for something. I just feel so crappy all the time
SK friendship is everything when going through this crap. You are a very "special" friend indeed ! I met someone my age at the cancer center last year and we have become the best of friends. We talk/text almost every day. She has come with me to H appts and I have supported her through genetic testing. Actually tomorrow i am going with her to her plastics appt as she is starting reconstruction soon. I am so happy to have met someone who knows exactly what i am going through
mstori yeah on the drains - those sound awful, i am not looking forward to that at all. Is there any chance they will release me after 4 days in the hospital without drains?????
lago great news on the liver scan!!! yeah!!!!
a quick rant to my trip pos peeps - i just replyed to another thread about PINKTOBER and how much I HATE IT. I really really hate being bombared by all this pink crap at every turn. I was looking for pj's the other day for surgery and i saw a set that had pink ribbons all over them - head to toe. I would never buy those, let alone wear them. Last pinktober i was in chemo, this pinktober i will be removing my breasts - not pretty people!!!!!!
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