A place to greet and meet newbies to stage III
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Hello - I'm new to the site and having trouble getting around. I posted on another forum and was directed here - yea! I'm Stage III b. Had a BMX (Bilateral mastectomy?) December 20, 2013. Started chemo in Jan. 2014. I think I've finished chemo, but I moved after completing radiation in June/July, and this new place either can't find or never had my records. They're not sure whether I've had the proper number of Herceptin treatments or not. Anyway, I'm taking Arimidex now and wondering what happens next. Am I in remission until something else develops? Are there tests to check to see if the cancer has returned? I keep hearing rumors about certain markers that show up in blood work, but no one has mentioned that to me.
BTW, I haven't figured out how to post all my data at the end. I had cancer in both breasts, three different types, the most dangerous of which was a large HER2+ tumor on the right. I had 12 positive nodes on the right and now have lymphedema in that arm.
I would appreciate information on what I can expect - although I know no one really knows that. I guess I'm feeling a little lost after the routine and structure of chemo. I had a schedule to keep; now I don't. I feel at loose ends. Does that make sense? I don't know what to do with myself anymore.
Thank you.
Lynne
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Welcome, Tuffy, tho I'm sure you'd rather not be here at all. To put your dx under your posts, go to the top of the screen and click on My Profile. Go to My Diagnosis and answer the questions as best you can. Then Save, and you can Make Public so we can see.
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Lolise, it is a breast amputation so might as well get them both removed instead of just one. This reminds me of a visit I made to Fort Sam Houston. I saw about 10 or so soldiers running in their pt shorts around the medical facility. They all had those metal blade legs - running fast. I don't think they would have run as well with one regular leg and one blade. It is a useful and positive thing to have the ability to replace your parts . A new normal yes but a normal we can adjust to and look and function like most everyone else.
Also, I have had the amputee conversation with a guy in a wheelchairs no legs from his knees down. Told him I was a double amputee too! We both laughed.
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1Tuff - I believe most people who are HER2+ get Hercepetin infusions every three weeks for a year - 17 treatments. I started mine combined w/first chemo & had to take a break w/2nd chemo after surgery, since two drugs that damage the heart are not given together. I started back up just before rads to complete the 17.
The most important thing is to get your complete records. You have a right to those and your new docs will need them to determine future tests or treatment. Many MO's do blood tests for tumor markers. My doc did the tests regularly but said the results are not very accurate - only an indication that other tests need to be done. Seems like the "new" protocol is to say - "OK you're cured, go on your way". Since I've already had a recurrence, that doesn't make me very comfortable. It's very hard to learn to move forward and I doubt any of us will ever stop worrying at some level. My favorite test is a PET/CT. The nuclear dye causes any hot spots to light up. It's expensive and has a higher dose of radiation than some others. That said, my original MO retired and the new one doesn't want to do much testing so I'm sort of where you are. I expect I'll start jumping up & down & yelling when I'm one year past the last treatments.
If you haven't, do get a reference for an LE trained therapist. Just learning the massage techniques is a big help, and getting fitted for proper sleeves, etc. There are a couple of great LE threads on BCO. Try "Grrrr..." And the following link is a good reference that most of us with LE use. http://www.stepup-speakout.org/
Sorry for the reason you have to join us but welcome.
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Hi, Minus Two - that's clever. We have a lot in common with treatments and doctors. I have found a certified LE therapist about an hour away and have seen her a number of times. Unfortunately, the past week or so my arm hurts more and has become somewhat larger. I contacted her and will go back as soon as this snow storm is over and I can drive again. I bandage every night and wear a sleeve every day. I also do the LeBed exercises and self massage. Don't know what more I could do, but I also understand that LE follows its own course and does not always respond well to treatment.
Thanks for taking the time to post; I really appreciate it. I will definitely visit the threads you suggested, and I'm already a fan of Step Up-speak out - oodles of good info there.
BTW, before I moved here - E. Tennessee - I lived most of my life in the New Orleans area or in Baton Rouge. Visited Houston many times and used to have family there. Great city.
Thanks for the welcome and the help.
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you sound like me and i think i need a day at the spa.. My body just feels like it needs to be squeezed and twisted. Everything aches.
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oooohhh Dancing - a day at a spa!!! How I long to do that, but with truncal LE I have to be careful who's doing the massaging and can't get in a hot tub or a sauna, or probably not even have a hot stone massage. sigh...
1Tuff - go to the 'Grrrrr I Hate LE' thread (link below) and read Binny's new post about cellulitis. She is so knowledgeable.
https://community.breastcancer.org/forum/64/topic/759378?page=277#idx_8297
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tuffmomma, how did I missurpost? On my last treatment I started sobbing because I felt lost. I also did not know what was coming up for surgery. We're on such a strict schedule for a year and then u dont know what to to Do with ur self. I kinda feel like now I have weapons and when it's over I'll be on my own....and that is scary.
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1TuffMama, what you're saying about feeling at loose ends after active treatment ends makes total sense. When we're in treatment, we're just focused on getting through it. Once we have gotten through it, some of us have a feeling like, "Now what?" I literally felt abandoned by my medical team. So, I think what you're feeling is normal. I'm not sure I have any advice on how to work through that. There's a thread called Why was I stronger during treatment than I am now if you want to go check it out.
Regarding your question on remission and tests for a recurrence, I don't think they use the word remission for us. At least my MO didn't. It's kind of like consider yourself cured until if comes back if it ever does. My MO does no follow up testing. He said the tumor marker blood tests are unreliable, and the scans find too many false positives. He also said that finding a recurrence on a scan adds nothing to your lifespan as opposed to finding it a few months later when symptoms occur. He said what's the point of knowing you're stage IV a few months sooner? I told him lifespan isn't the only thing to consider. If I found out I was stage IV, I'd quit my job and do a few things on my bucket list BEFORE I started having symptoms and needed chemo. He agreed I had a point, but it's still not standard of care to do scans. I see him every 6 months, but that's mostly because I also have a form of lymphoma, and he does blood tests to monitor that. (It's a race to the finish! Which kind of cancer will get me first?!) He also asks if I'm experiencing any symptoms of breast cancer metastasis like bone pain, abdominal pain, headaches, shortness of breath. In addition to that, I see my RO once a year. She asks me the same questions and does a "breast" exam. She wants me to have that exam every 6 months so I see my GYN 6 months after the RO. That's it. I don't really like this, but short of lying and saying I have some symptom, there's nothing I can do about it. I think this lack of monitoring is one reason I feel a bit at loose ends like you. I suppose I'll get used to it.
I hope you can get your medical records. That's got to be frustrating. Are you going to get reconstruction? It's not for everybody, but I'm in the middle of the process now, and it's helping me feel a bit more normal. Good luck! Please ask all your questions, have a good rant if needed, whatever helps.
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2Tabbies - you're right about the terminology. Technically I'm "NED" - no evidence of disease. That's as good as it gets with breast cancer.
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Tuffmama, welcome! I have found that eating anti-inflammatory foods and getting enough exercise both help with the LE. Since lymph fluid only gets moved around by the muscles working, it stands to reason that moving ought to help, even if only a little.
As others have said, you need to get copies of all your records, so that your new team can have access.
Yes, you can test for certain tumor markers in the blood, but it is controversial, because the tests are unreliable, including many false positives.
The first two years after my surgery, they gave me a full CT and a bone scan each year to check for recurrence. They also did a heart ultrasound to check for heart damage from the treatment. Now we just do a chest X-ray and a liver ultrasound. However, I get a full blood panel for each doctor's visit. The first years that was every 3-4 months, now it is every 6 months. I have also had a few ultrasounds of my chest along the way, when some bump concerned us.
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Minus Two - Thanks for the link. My immune system is worse than normal because I have several autoimmune diseases. I am very careful, but it never hurts to be reminded of the dangers of LE!
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Dancing diva - My sentiments exactly. I feel as though I've been dropped out of a plane and landed behind enemy lines without a map or a weapon. I guess Arimidex is my weapon, but I don't feel protected. And I hate the "hot flashes," which in my case have become "protracted superheated intervals." Ha!
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2Tabbies - I am relieved to know that what I feel is not totally off the grid. I didn't think it was, but where BC treatment is concerned, I tend to feel insecure until someone validates my feelings, as you did. Thanks for the great post.
BTW, I have three black cats, all rescues. Friends have joked that perhaps that's the source of my troubles. :-)
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Momine - Hi, and thanks for the helpful info. I may have mentioned that I do the LeBed exercises, but I also hope to start walking when the weather improves. I have balance issues from inner ear damage, so I have to be careful. And I am.
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I think my post got buried...reposting because i'm still feeling blah and this forum may be the only one that is full of people who get it.....
I'm sure this is normal. But I thought I already went thru the "I'm done with treatment, why don't I feel better" blues. I'm exhausted, I'm cranky. I'm happiest when I'm busy, but have little patience for small talk. Is freezing and snowy so I havent been running. My arm hurts (lymphadema? Maybe, wearing a light compression sleeve just in case.) My eyes are off, eye doctor says all is fine and this week my glasses seem fine while last week they didnt. My fIngers hurt (Arimidex I'm sure) but manageable. while I'm often tired I don't go to bed early and I would love to sleep all day if I could..... and, the bottom of my feet are crazy itchy.
Ahhhh, I guess I'm ok. Just wanted to vent with people who know.
smiles,
Jen
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Question: Does anyone taking Arimidex also take some form of treatment for osteopenia/osteoporosis? I'm on the fence about that. My onc wants me to start Reclast, which I took before BC, but it can cause serious side effects. On the other hand, Arimidex can cause or aggravate osteopenia and osteoporosis, so there is legitimate cause for concern. This is one of those areas where you have to choose the lesser of two evils, but I'm not sure I have enough accurate information to make an informed decision. Anyone?
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Tuffmama, my onc is very itchy to put me on prolia. For now I am holding off, but it is a problem with the AIs.
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Jenwith4kids, I know exactly what you are feeling and saying. I was exhausted and felt a sense of let down for two or three years after I finished all the treatments. Our hormones are all out of whack after chemo and then we get a double whammy with the AIs. I made a point to eat a very healthy diet and I made sure to do rigorous exercise at east 4-5 times a week. That's the ONLY thing I have found that helped with the extreme fatigue. I have far less joint pain, lots more energy and it also helps my truncal and are LE. I also sleep much better. Hang in there. Things will get better with a little more time.Tuffmama, I see you also had ILC. My onc was very encouraging to me when he put me on the AI's nine years ago. He said for ladies with ILC the anti-hormonals are the most important piece of our treatment. Hope this helps.
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I had been osteopoenic AFTER chemo, it still pi$$e$ me off that I wasn't tested BEFORE chemo. But, six months of arimidex threw me into full- on osteoporotic. So, yes I have gotten 3 shots of prolia since treatment, once every six months.
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Tuff - re: bones - My MO wants me to take Evista infusions for bone loss. I'm fighting that after reading the side effects. Anyone else doing that? GYN says OK to wait and just keep up with the calcuim & Vit D. I think I've made all the intelligent choices I can after the last few years. One more will put me over the top raving. So I'm doing nothing right now.
Yup Jen - we get it. WTH are we supposed to do now while we're fighting our way towards the "new normal". It took 8 months for my taste to even start to come back. Still have severe neuropathy in feet & fingers. Fighting truncal LE with a physical therapist. Vent away!!! We'll all join in off and on when it gets too crazy. Jillian is right about the exercise but I'd rather lie in bed & read. Sorry for my rant.
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Thanks, Jillian and Minustwo.... My head knows that it will take up to two years ... It's good to hear you say that you were "off' for 2-3 years (well, not good, but you know what I mean). I totally get it about the exercise... I like to run and was feeling much better when I was doing that regularly, but the weather has been uncooperative with artic temps - - too icy to run outside. and yes, I'd rather sit in bed and read too!!
I'm on a decent diet - I've lost most of the weight I gained with chemo. I've plateaued a bit which is okay, because I know I will lose more once I start moving again.
Looking forward to my exchange surgery.
Oh - and today, for the first time, my wrist is swollen... argh, not happy about that. My PT said I had stage 0 LE, some symptoms, no swelling....so I've been in a sleeve which makes me feel better, but I was happy thinking it was preventative. hate that I have swelling today. And cording.
Okay, this wasn't meant to be another vent. sorry! LOL!
Have a great night.
Jen
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Jen, I think the way you feel is absolutely normal. I'm not even done with everything yet but I certainly felt something after chemo was over. I have been up in my house for 2'wks now at after surgery, and I'm getting lazier and lazier. I find the more I do, the more energy I have. The heaps of snow and frigid weather does not help. I have ventured out for doc appts and is hate it out there. Want warmer weather!!
I can't handle people complaining about their ailments. Even my 80 yr old mom. I really feel bad for feeling that way, but in my head I'm thinking, look at ur age!! It's expected!! What am I supposed to say?!
I used to get a lot of chills that accompanied the hot flashes when I was on chemo. The flashes have subsided mostly but the chills are increasing. I have no fever. R u ladies experiencing chills?
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Minustwo, same here about the osteo drugs, I am trying to delay the domino effect of one drug causing a problem that needs a second drug causing a problem that needs a third drug and so on.
Also, after much reading, I am just not convinced that the bone drugs necessarily help enough to warrant the side effects. Apparently, half the women who suffer fractures are in osteopenic range, not osteoporosis range. I have talked to several docs about this, and even the specialists do not seem to know all that much about how bone health works.
My surgeon thinks it is OK for me to delay starting the bone drugs. His rationale is that the benefit is small, and although my spine is not in great shape, he figures that my active and healthy lifestyle puts me at low risk for fracture. Another thing is that only my spine is bad. Osteoporosis is considered a systemic disorder, and yet my hip and everywhere else seems just fine and holding steady, in spite of the AI.
I really think we need more research on this whole issue. Because I get blood draws often, I have also noticed that if I increase my calcium intake, it just ends up in my blood. Even a small, daily calcium supplement (600) will cause my blood calcium level to top out the normal range. So, obviously I am not metabolizing calcium right. I have asked all my docs about this and they just kinda shrug, clearly because they don't know.
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Good morning everyone, I am 1 year out of chemo and 8months out of radiation and currently taking Letrozole as Arimidex and Tamoxifen did not agree with me. As far as I know I am in remission but I do get an MRI every 6months to follow up on "suspicious" spots found on my lumbar spine early on, negative for Cancer on bone marrow Bx but they don't really know what they are but as of last MRI I was NED and I am due again in early April for labs and MRI. Still trying to navigated this whole "New Normal" thing and I feel like i am slipping further and further away from loved ones.
Shary
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Hello stage 3 ers,
Sorry if I am repeating myself, hard to remember where I posted what. I have had 2 Zometa infusions, will get my 3rd in April. My dexa scan pre-chemo was normal. I have not had another. I had read on this website about Zometa helping prevent bone mets. It was an article from the San Antonio Breast Symposism. It is controversial, but makes me feel like I have one more weapon against mets.
I had a MO appt. this week. My MO has never used the words NED or remission. She did this week use the words Cancer survivor. That annoys me, then, I get annoyed with myself for being annoyed at her. All those terms seem like a lie. That is the moving on, part of post treatment that I am aware of. I had shoulder surgery 2 weeks ago. Bone spurs, bicep tendon torn. So, being a patient again, too much down time. I need to be busy.
Hope all has a good weekend...
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hi Shary,
Is it difficult being back to "normal" and being around ur loved ones.
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I had a bone scan done and Osteoperosis is -2.25 and I was -2.26. My doc put me on Fosamax until I have another bone scan in two yeas. I didn't think I'd have a medication since it was so close. Have some of you had this issue and not taken the meds?
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Momine - yes, my blood calcium level is 9.2 after 3 months of no drug or supplements - and maybe 2 glasses of milk a week. Standard range is 8.5-10.5. So if I start back on 1200 mg per day I worry about the risk of kidney stones.
We both seem to be in a holding pattern. Drugs like Fosamax (Actonel, Boniva, Zometa) that can cause osteonecrosis of the jaw scare me to death. Evista increases your risk of stoke & blood clots in the leg, lung & eyes. So far on this BC journey I have managed to get all the side effects that "no one has to worry about", ha ha...since I have LE and neuropathy.
Funny - my spine was great at the last DEXA scan but hip had horrible bone loss w/chemo. One of my nightmares is falling & breaking a hip. So many older women go to nursing homes after a broken hip & never come out. Sigh. Thanks for listening.
HoleInOne - I agree. Docs who think of us as cancer survivors don't understand BC prognosis - or don't have a clue how to talk to patients. I can deal w/NED or remission but I'd be angry too.
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