TRIPLE POSITIVE GROUP
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I get mine every year and the insurance seems to pay. My endocrinologist was surprised. Maybe because I have a family history and was osteopenic to start.
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Hi Notbuyingit--be patient someone should come along with some answers for u I have none But these ladies are loaded with good ideas..
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notbuyingit-try acetyl l-carnitine. I took it throughout based on the recommendation of another fellow chemo patient, and some research I did online. I didn't have too much neuropathy. Mine wasnt pain, but was fingers and toes that were so freezing cold. My husband would warm up hot water bottles and heating pads when I went to bed at night to help.
cypher-I have no idea if that is true of false. I thought I read somewhere once that the her2 villains can travel in the bloodstream and hide out until something knocks at their door and they decide to go all postal. It has been a long time since I think I read that so please do not use it as factual.
Anyone else know if stage 1 with no lymph nodes can become stage iv years later with it being the same breast cancer? I just cant remember.
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During chemo for neuropathy I used 30g of powdered L-Glutamine (10g 3x daily), 1500 mg of Acetyl L-carnitine, and 100mg capsule of B6. Took this each day and the mild neuropathy I developed had dissipated by about 3-4 months PFC. I have continued with the vitamin B and the Acetyl L-carnitine, but dropped it down to 500.
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Do they make a gummy for those special?
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fluff. Yes. My Mom was a stage one no nodes. She died if the same BC cancer they told her they had gotten all of it. So she had no chemo. No rads. Just BMX and at that time they too all the axillary nodes to. Almost 8 years later she had exploratory surgery they thought might be gall bladder but was BC mets. She died 3 days after the sx. So yes. It can happen.
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fluff - I wish!!! They do for the B complex. I have not been using gummies lately though because I eliminated all sugar. So now all I have to do is invent sugar free unsweetened gummies! I'll start tomorrow, lol!
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Fluff, I had that conversation with a friend of mine who had breast cancer about seven years ago.(no recurrence) she said that she had been reading some bloggers about that and the consensus seemed to be that the people who were seemingly stage 1 and recurred early were actually not stage 1 all along. however, you have had several PET scan so it seems like you really were stage 1. Moon, not sure if that was the casefor your mother. Sounds unlikely that they would have done a PET scan. But of course that was a recurrence 8 years later so that's a bit different. I am glad that you are getting such thorough treatment. I think that given how little treatment your mother had, how much treatment you've had, and the fact that there was an eight-year delay makes it very likely that you won't ever recur. Anyway that is what I would hope for you.
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okay now this is getting freaky. I tried to add
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fluff, I read this article about recurrence of early stage her2+ breast cancer. I will say I slept better after reading it.
http://www.lbbc.org/Understanding-Breast-Cancer/Breast-Cancer-News/News-From-2013-SABCS
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I think in some cases where the stage 1 get mets I wouldn't be surprised if they had a lower grade tumor. Because they don't grow as fast it takes a while before the tumors will be big enough for the scans to catch and yes they might have had mets right along. Also if it's that slow growing it could be years before it becomes a problem. Just my thoughts
Acetyl L-carnitine I took this (and still do) and it seemed to reduce the neuropathy in my hands but I still got in my left heel. Not too bothersome unless there is a weather issue. I still take it because it's a memory booster. At the time I was being treated there were studies going on to see if it would help like it does with diabetic neuropathy. From what I read it some cases they studies claimed no effect or made it worse but they were taking mega-doses. I do believe it helped me.
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Hello everyone! I'm back after a few months away.
It was so strange - I had a follow-up u/s and then appointment with the GYN ONC about the ovarian cysts (I think I posted about that on here . . . ) the same week as my last Herceptin. When it all came back clear, I completely checked-out. I went from whirlwind tests and appointments to nothing. It was strange. But good. I think my brain just needed a break from the whole cancer thing. But, last night I started itching in the completely numb part of my side (near where my drains were) and had to get on here to see if that was normal (of course!) and realized how much I missed you ladies.
I'm not completely sure if my break was a good thing, though, because somehow I got myself elected to the PTA at school, volunteered to lead some clubs, and (as my husband so sweetly points out every night when I'm crashing at 8:30) I'm over-committing. But it's just so wonderful to have a life that revolves around something other than doctors' appointments.
I'm sorry I didn't get back on here to update everyone - but the ultrasound I had (which my husband insisted we do before scheduling surgery) showed physiological hemorraghic cysts - so basically I was ovulating - or trying to anyway - and the cysts were getting a little out of hand - but nothing to worry about. I'll have another follow-up ultrasound this summer to make sure that there is still nothing going on - so maybe it was just my ovaries freaking out after coming out of their chemo-induced coma. . .
My exchange surgery is scheduled for April 24, so I have a few pre-op appointments coming up. I'm so looking forward to getting rid of these TE. Mostly because I miss sleeping on my stomach. Please tell me that after I heal I will be able to at least occasionally sleep prone?
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Mck, glad to read you're doing so well.
Lago, your hypothesis kind of makes sense, but is that a pattern that you have noticed or just a guess?
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McKatherine awesome news. As far as the phantom itching... annoying isn't it. I had one of those numb itches a year out on one of my boobie prizes in the numb area. You'd itch but it really doesn't do much. It wasn't bad. I think it might be a sign that possible you nerves might still be repairing... or that it is confused and fucked up (but not in a serious way). Some women do get phantom pain that never goes away... that is awful but you sound like me. Probably will go away. If not consult your surgeon. Also always be on the look out for redness.
cypher it's based on a number of things I read but not as far fetched as you might think. This article supports that hypothesis but I don't know if there have been any follow up studies... and as we know they are now finding there are other biologies associated with recurrence. It may be several things that need to be aligned up with the planets for recurrence to happen or not happen. So nothing is black and white with this disease. linky
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Lago - you made me laugh with the comment about the redness. I asked my husband to look at it last night and he (very rightly) said, "well, it looks like you've been scratching it!". Since the scratching doesn't seem to help I'm just trying to ignore it today. But I'll have him look again tonight when I haven't been clawing at it.
I do think there's something to nerves re-growing and strange sensations, though.
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Well I mean redness and warmth especially if that redness spreads... you know like infection. Good that you are trying not to scratch..
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lago, actually it doesn't sound far fetched. I think sometimes we are in a good position to notice certain patterns. I believe there is a thread for women who went from stage I to IV, though it didn't come up in a search. It would be interesting to look at those women's footers....
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Linda, YAY! Your Dx sounds very similar to mine. Keep us posted on what your options are for chemo. I've been hearing that what I ended up doing (12 weekly taxols with herceptin + a year of herceptin afterwards) got high points at the San Antonio Breast Cancer meeting last year, so it is becoming more common. Taxol was easier for me than taxotere which knocked me on my butt!
Bren, my baseline DEXA was bilateral hips, spine and neck. Oddly enough, my bone density was statistically significantly higher on my left side than my right (hips, femoral neck, etc). I was confused...so I went to the bone guru in my company and asked him. He asked me "If I were going to give you a 50 pound sack of flour and ask you to put it on your shoulder, which shoulder would you put it on?" I'm left handed so I told him left. He said "there's your answer". Turns out my left side hauls the load...my purse is always on my left shoulder, bags of mulch go there...weight bearing exercise builds bones. I think they should do your DEXA (at least baseline) on both sides. But I don't know if I'm common, and both sides had normal t scores. But is shows me how good exercise is for bone!!
McK, sounds like healing nerves. They can itch like crazy. I wiped out roller skating as a teen and my knee was numb for months. As the nerves healed, I almost scratched down to the knee cap
Notbuyingit, I'm with you on the neuropathy. I'm doing some sort of B vitamin complex now and it doesn't seem to be doing much. I'll try the carnitine. I find i'm much better on days I don't wear shoes (like sundays) and when summer rolls around and I wear sandals. But it is driving me nuts. My Mom is hanging with her brother this week who is a giant cheese in neurology, so I asked her to see what he says. He thinks oncologists are barbaric (as do most doctors outside of the cancer field) and that they do a lot of awful things to their patients. I tell him that they save our lives too. So I'll let you know if he has some magic potion we can use...
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Oh right I forgot it's femoral neck... that's your leg.
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Gals, trying to get caught up with all the posts. I see we have a few new faces. I am excited because I only have 3 more Herceptin treatments left and then I will be DONE !!! A year ago this month I started my chemo treatments after my lumpectomy the day after Valentine's Day. I'm so glad that unlucky 2013 is behind us.
Hugs to all :-)
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PBrain, i can't hardly wait to hear what the neurologist has to say about neuropathy! I did get to see a neuro-oncologist, a month or two ago, he didnt think that i had much of a case, according to his questions and minimal testing. But i remember being amazed when he told me it was possible to get neuropathy in the nerves of your ears, from chemo. i think part of what i was experiencing was tinnitus from tamoxifen. after a two month break from that, so far so good on femara for a month almost.
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pbrain. Here's a thought for your brother. My MO said something to me when they had go lower my dose and I asked if the lower dose would be enough. He told me "you have to be alive in order for any of this to work." Um yeah. So they know how close to the edge they play this game!
Welcome back to Mckatherine and Gigi.
Much love to all
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mcKatherine-I am a stomache sleeper also. I couldn't sleep without ambien after surgery as I couldn't get to sleep on my back, and I don't sleep soundly. Now, I can sleep on my stomache, but....I kind of squish a pillow up across my chest to take the pressure off. I couldn't get used to that. That requires then a second pillow to put my head on. I have a hard time sleeping with my head on my arms like I used too. They get numb quickly if I do. It seems like I end up on my side a lot, after starting out on my stomache.
Also, while my kids were growing, I was determined to be a do it all mom who could work and be involved in the kids schools and community programs. Someone gave me a sign once that said "just say no." Lol, not sure I ever took it to heart then, but Imhave gotten good at it now.
Cypher-I used to subscribe to that thread but dropped it. I can't find it now either. Can't exactly remember how it was worded.
Nunci-like pbrain, I did the weekly taxol/herceptin and did well on it. I questioned the two docs who recommended it because it wasn't your typical protocol. Both said it was being used a lot in Europe with good results. I was glad to read that update.
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also, I was on a low dose of cymbalta for panic disorder when this all started and took it throughout chemo until I started tamoxifen and had to switch. I am convinced that helped with joint pain. I continued with Pristiq and Effexor to help with hot flashes but weaned off all those about a year ago, because I was still having hot flashes.
If and when my onc switches me to an AI, I may be tempted to ask for cymbalta again. I figure if it helps the joint pains and adds some calming effects, it's all good!
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Fluff I used to be a stomach sleeper. Not anymore. Can't last more than 10-15 minutes. The boobies are too big now.
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Lago, I actually told my ps that was one of my concerns and why I wanted to stay smaller. He actually laughed. I was serious. Sometimes I just have to stretch out on my stomache.
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I can still do it but it's just not as comfy as before. The thought had never occurred to me because I never had big boobs (never been pregnant) and didn't think I was going to be more than a small c, large b because that's what he told me.
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Herceptin is all complete. Yesterday when I saw my MO, I asked her what were my chances of non-recurrence and she told me 80% because of the Herceptin and Letrozole and those were wonderful odds. She also told me that most recurrences would happen within two to five years, but if you went past five years, chances are there would never be a recurrence. When I questioned her about special foods to eat, she said there really are none, but just to follow a healthy diet and to exercise. According to her, everything pertaining to cancer is just a crap shoot as to who develops it and who has recurrences. She was very positive with me and believes my outcome will be a positive one.
I received Taxol and Herceptin together beginning last March.
It feels wonderful to not have so many medical appointments anymore.
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honeybair - yay!
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