TRIPLE POSITIVE GROUP
Comments
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And I have questions for you ladies – I am having a lot of muscle/joint pain. Here are my leading hypotheses on the subject:
1) I’ve lost a lot of muscle tone thanks to the significant reduction in activity during chemo. I’m working hard to gain it back and am making progress. No pain/no gain > pain/gain. Though this doesn’t explain some of the locations of the joint pain very well…
2) Herceptin and possibly pertuzamab are causing it. I didn’t notice it during chemo b/c of the anitinflammatory effects of both steroids and the chemo. Now that I’m done with that, I’m experiencing herceptin-induced joint/muscle pain.
3) I’ve lost a lot of muscle thanks to chemo—not just b/c I was exercising less, but because of damage done. Chemo also damaged a lot of my joints and such, but I didn’t notice it during chemo b/c of the steroids and the anti-inflammatory effects of the chemo.
I haven’t started tamox yet.
Thoughts? Much appreciated, thanks.
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Cypher everone knows I don't know anuthing I just kind of listen---I think the combo of all u get tears bodies apart in other ways--if it's strong enough to kill cancer cells it has to be doing something else to u'r body and it would probably get to the parts where u might have been the stongest--It has to get to other parts--between chemo, herceptin, rads how can u'r body say OK it's over no SE, then u start some med to keep things in check so it's like starting all over (for some) with same or different or more SEs--That's how I figure it. It's not medical it's my own thoughts. LOL
Every bone in my body hurts and I have seere diarrhea all the time--never had that before.
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Cami, that totally sucks. This is a nasty-ass disease.
Ok on another note, have any of you had the pleasure of talking to people (who haven't had cancer) who say they know people who swear that cancer is the best thing that ever happened to them because of the amazing insights and personal growth they underwent, such that they are now practically the Dalai Llama and Jesus rolled into one? Because I know, kind of, a lot of people at this point who have had cancer and I don't hear anyone saying that. Or maybe I'm just being negative today.
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Well as for me I have never heard anyone say they had personal growth--in fact both my sister and me have shrunk 2 inches--at the same time. My cousin thinks it's a rat bastard still and my niece says it still sucks--my Mom and my 2 aunts never ever spoke of it cuz to them it was u just don't acknowledge it--my brother just says I don't want to think about it--My sister-in-law has passed away from it--so I don't see a lot of ups in my family, but maybe that's just us.
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dancetrance - I know there is a med used for high blood pressure that can also be used for hot flashes. Not sure of the name though....
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Kayb u said it perfectly every word---but I do like the direction u are taking it sounds so unselfish and caring for u to do. I could never do anything like that--I'd be the one to say face it it sucks Thank u very much. My speech--don't think I wouldn't be fired or ask to step down FAST
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I had a PET scan yesterday and was nervous prior to it because I am entering those couple of years where recurrence for Her2+ is most common. I have an appoinment on Thursday with my MO to review the scan results (my regular quarterly appt.) but I just got a call from his office - results from the scan are normal! Yay! I thought it was so considerate of them to call so I can relax from now until the appt.
I agree with those who find that a BC dx may have introduced them to some positives, but it sure introduced me to a boatload of negatives too! Do I feel it is a gift, no I don't. I was an appreciative and positive person prior to BC, thankful for my blessings. That has not changed with my dx, but physically I have changed tremendously. While I try to live my life as fully as possible I will never escape that little voice in my head that reminds me I "had" breast cancer, and it may come back. Some days I hear it a lot, other days not - but it is still there and I can't pretend it doesn't have an effect on me.
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SpecialK - so happy for u!, I think once we are all in the community of Cancer u always wonder if it is coming back. You said something interesting that I would like a bit more information about... You mention you were at the point where Her2+ can come back, not sure I have ever seen that statistic and would like some more info. Thanks.
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Kathy.. Congrats on a clean scan. I am so very very happy for you..What a great early Christmas present.. Hooray!!!
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Her2+ cancer is thought to recur more quickly than other types. Here is a previous thread with discussion and some links:
http://community.breastcancer.org/topic_post?forum_id=80&id=763061&page=1
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Kayb & SpecialK - well said. I can find positives that resulted from my being dx'd, but I miss my pre-BC life when I didn't have the scary thoughts too much to ever call it a blessing.
SpecialK - awesome scan news
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Speciak K....
Such wonderful news for a very wonderful girl! So happy for you and your family....0 -
Congratulations SpecialK. What an awesome feeling.
I wish I could get them to do scans on me but they say there is no reason too. March 1st will mark 2 years since my surgery. Yikes, this month 2 years ago, I was diagnosed....I just realized.
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sk - great news! I feel the same way about feeling like i am entering the "danger zone". My onc said year 2 and 3 are the most risky for her2 reccurance
if BC is a gift can someone tell me where I can return it? ha!
no, absolutely not going to go on a speaking circut either kayb, BC sucks the big one. Sorry, it has not "enriched" my life and no it is not a "blessing". I miss my life pre-BC and will never be the same. I was at my MIL the other day and my SIL said I should volunteer at the cancer ctr because I am so knowledgeable (like i ever wanted to be an expert on BC) my DH pipes up "she's too angry still to do that". He is so right, I would scare all the patients away with my tirade on chemo, surgery nightmares, tamox SE's. I guess its all too fresh still
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Roxem: I know what you mean. I've been trying to help out a friend who was just diagnosed and it is hard to keep the positive in all of this. I can't say I'm angry but I sure don't like it. Every ache and pain we feel, we automatically think it is the bc hitting another spot in our body. Like my darn ribs. They start in every evening...find all day. Guess I need to ask her again but I'm thinking/hoping it is associated with the arthritis in my right hip. Our lives are so different now!
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Congrats Special K!! Fantastic news. And Rozem, you crack me up!
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SpecialK that is awesome news! Congratulations! And how nice of the office to call and relieve your anxiety about it!
Rozem I think we would all like to find that return desk for this "gift". The line would stretch for miles!
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Wow my interview was amazing about an hour long and 2 people asking me questions left and right gees anyway I think it went great but got a headache out of it. Anyway just thought I would let you gals know now I just have to wait and see if I hear from them...
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Sk,
Great news!
On the heels of your good news, I hope I don't have bad.
My lower back, the actual spine, has been throbbing for about a week. Its stiff and sore in the morning, but by lunch it is just KILLING me. It's not getting better or worse. Just the same. Every single day. It feels like my bone is on fire.
Of course you know where my mind goes.
The thing is, I haven't done anything that might injure it.
Gah, whoever thought we'd long for an INJURY! Today I thought about recurrence, or mets as I was driving to and from errands. I realized a big part of me considers it inevitable. We're thinking about buying a new house, but I keep thinking....I'll get it perfect (I love interior design) and his NEXT wife will get to enjoy it.
I wondered today how she'll like my Kia. lol
See what I mean.
I'm not sad. Not angry. I just KNOW my body. KNOW my luck.
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TonLee, don't go there! you will be the one to enjoy the new house and the Kia!
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TonLee, don't go there to that dark place. You have fought a giant battle, and if need be, can fight again. I had some pretty achy low back pain last Winter and Spring, which was odd for me. Turns out I just needed to get out there and garden and stretch the back muscles. I would have sworn it was bone the way it felt, but nope, just being a tid bit flabby in the belly region. (ok, not tid bit, but I know you are very athletic). Maybe see if some yoga alleviates it?
I'm still cracking up at us as "motivational speakers". I can see us up there "this God damned friggen sucks and chemo is the worst, makes you poop and puke at the same time, all your hair falls out and then you get hot flashes, but, um, everything is ok, puppies, kittens, pretty yellow butterflies..."
Oh yeah, you'd want me on the stage...
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Oh TonLee, Please don't let your imagination do this to you. It breaks my heart that you are having these thoughts. Sending thoughts,prayers and much love.
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Ladies, as I have a pretty rare combo of invasive ILC and Triple Positive, I think I'm going after a second opinion.
Can anybody recommend a specialist who studies lobular carcinoma that is also HER2NEU positive? I just talked with my oncology nutritionist and she thought it was a good idea.
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TonLee...
Sadly it seems inevitable that we will all repeat what you are going through many times over in our lifetimes. I... like you ...have never had a full body scan so I think I've never really exhaled post the year of treatments .
Are you going to try for that scan?
As for the new house and Kia.....you and EVERYONE else... should enjoy them and anything else you can reasonably afford and desire NOW...because no one is guaranteed tomorrow.0 -
TonLee Don't go there. If you buy a house Enjoy it..
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SpecialK - Hooray!!! And thank goodness they called to give you the news versus keeping you hanging!
ang - The interview sounds like it went really well!
rozem - Indeed! (re: returning the so-called gift)
tonlee - (hugs)
ETA: apologies for that kind of lame (hugs) thing, tonlee. I had just gotten off a kind of annoying phone call and hadn't read what had been posted while I was in the middle of delayed posting. Great advice from everyone about the subject...also, re: my own strange aches/pains - some of mine are barometric pressure related. I use wunderground classic (that's the only one I've found that shows rising/falling barometric pressue) to track the barometric pressure and it's amazing how a slow-moving front can play havoc with pain receptors.
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kayb can you pm me any excercise suggestions for lower back? mine is killing me but i know its from slumping over in response to these TE's - I am starting PT next week but i am really suffering. Front/back you name it, it hurts
tonlee my mind goes to the EXACT same place, we were thinking of moving a few months before i was diagnosed and of course i thought the same thing. I just can't bring myself to make these long term plans. I havent even contributed to my RRSP (like your 401K) since this happened. I thought the same thing, why set up this perfect life for someone else? as for your back pain...it can be related to stress plus our posture is shot with surgery. I know, we long for the days when back pain was just back pain
pbrain yes those would be some funny speaches, I'm sure Komen wouldn't be knocking on our door to "inspire" the troops. Can you imagine our rants on poop alone - lack of/too much of!
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leeA sorry about your TE surgery - hope the replacement isn't giving you any trouble
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hi rozem, I had an appointment with the BS today and will see the PS on Friday. I'm on intravenous antibiotics so I'm hoping everything will turn out okay...
I have a lot of annoying discomfort in my scapula area which I didn't have the first go-round on November 9. I'm assuming it's due to the position during surgery (arm extended for a long period of time).
How are you doing with your tissue expanders these days? Any better?
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Thanks ladies, I'm feeling the love! I was mighty relieved by the phone call regarding the PET scan - this is the first one I have been nervous about, having all those same kinds of thoughts as tonlee, which is our new state of consciousness. Some days I am in control of "it", other days "it" controls me!
tonlee - stop thinking those thoughts! Buy the house, drive the Kia, you're going to be here for the long run...
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