I can't believe I'm posting this...

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twink
twink Member Posts: 1,574
edited June 2014 in Triple-Negative Breast Cancer
I can't believe I'm posting this...
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  • twink
    twink Member Posts: 1,574
    edited May 2008

    I finished rads in early January.  Saw my oncologists and BS in late January and was set to go for 3-4 months.  With scheduling problems, I'm now at the 5 month mark before I see my oncologist.  I'll be having a PET/CT before that appointment.  In the meantime, I feel like crap.  I don't think I've felt this bad through multiple rounds of neo adjuvant and adjuvant chemo.  Every bone in my lower torso aches.  My neck and shoulder (on the non-BC) side feel like somebody is pinching my tendon.  I moan and groan all day.  For most of the day, I have blocked ears (like on an airplane), I'm borderline nauseaus, I have aches and pains in my thighs and groin area.  The pain was so bad last week that I went to my PCP for help.  He order pelvic and lumbar X-rays and all came back normal.  The anti-inflammatories and muscle relaxants seem to help a little at night.  I should say that I've also been traveling back and forth (by air, three hours each way) as I prepare to move to another state.  I'm hopeful that the hotel bed/my bed combination and hiking bags around are partly to blame for how bad I feel.  I could have weights tied to my legs and arms, I'm so lethargic most days.  I can't believe I feel so bad so long after chemo (last one was Oct 17) and surgery (bilateral 6/07 and AND 7/07). I'm so worried.

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  • katzmeow
    katzmeow Member Posts: 7
    edited May 2008

    twink i can only say that it takes along time too feel like a human what you used to be able to do is not as easy at it was.  i am 3 years out of chemo ive had a full hysterectomy shoulder rebuild surgey and just in the past 4 months have i felt like me its a long haul to get back to your self.  keep your head up and push

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  • katzmeow
    katzmeow Member Posts: 7
    edited May 2008

    twink i can only say that it takes along time too feel like a human what you used to be able to do is not as easy at it was.  i am 3 years out of chemo ive had a full hysterectomy shoulder rebuild surgey and just in the past 4 months have i felt like me its a long haul to get back to your self.  keep your head up and push

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  • Sadie-Rose
    Sadie-Rose Member Posts: 222
    edited May 2008

    Hi Twink,

    I remember it taking much longer after treatment than I had thought it would to get my energy back.  I know it was more than a year.  My oncology nurse says, "Chemo is the gift that keeps on giving." 

    It is hard to know if it is from pushing really hard or just part of the journey.  I think with moving and flying you would have extra stress and you are tapping your energy reserves. 

    If you continue to have muscle pains and feel flu like off and on, you might ask your doctor to check for an autoimmune disorder.  Your symptoms match many of mine. I was just tested last week to see if I have this diagnosis.  It takes two weeks for the results to come back. It is a long wait.

    I hope you have a restful night.

    Warmly,

    Sadie

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  • Vickan
    Vickan Member Posts: 54
    edited May 2008

    Hi Twink,

    As I am having count down on my chemo I raised the question with my Onc how long the medicine will be in the body and that I will be able to feel some side effects. He mentioned to me that I can be up to 12 months after the medication stops.

    I hope that this is helping you a bit and good luck with your moving plans.

    All the best,
    Victoria

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  • LisaSDCA
    LisaSDCA Member Posts: 2,230
    edited May 2008

    Ah, Twilah - I went in earlier this month with many of the same complaints (add neuropathy and a persistent cough). I even had the ear thing. However, I didn't have the good excuse you do of pushing yourself to the limit with a hectic work schedule and preparing for a major relocation. Your body is running on empty (cue Jackson Browne). It's amazing you haven't had a full-on collapse. I'm anemic and I wouldn't be surprised if you are, too. After the radiation you had, you ought to have your thyroid watched carefully. It could also contribute to the symptoms you describe. And as Sadie mentions, there's also the autoimmune thang. I had mine already going in, but an ANA test (Anti-Nuclear Antibody) is simple enough to add to your blood tests (mine come back in only 48 hours) to answer that question. Any of these would contribute to fatigue, malaise and body pain greater than one would already expect for a woman, only months out of a grueling cancer treatment, trying to do all that you do.

    Please note that none of the possibilities mentioned above involve recurrence or metastasis. I'll be thinking good thoughts that your PET/CT confirms this. Mine did.Wink

    Hugs

    Lisa

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  • jdash
    jdash Member Posts: 754
    edited May 2008

    twink

    i was hit with that total lack of energy just like you after my chemo then surgery  i felt just like the way you describe

    i did though go on anti depressants which helped lift the cloud alot

    one day i woke up and realized i felt much more like myself  then day by day i realized it was getting better

    you are probably doing too much and you need to try and relax a bit even though i know thats easier said then done

    i lead a very hectic schedule and never much rest but i always felt that that was good for the mind!

    BIG HUGs

    j

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  • HeatherBLocklear
    HeatherBLocklear Member Posts: 1,370
    edited May 2008

    Dear Twink,

    Although I haven't yet reached your stage, I can very well imagine how you're feeling after the wringer you've been through. To me it sounds like you're emotionally and physically exhausted from all the mental anguish that accompanies BC as well as from the very real assault that our bodies take as we fight to recover. On top of that, put the enormous task of moving to another state (this is considered a major life stressor in and of itself -- never mind doing it right after going through treatment for BC!). Of course you're worn out, in pain, depressed, the whole lot.

    Take some time to rest and care for yourself. Get a pedicure, read a good novel, go swimming or boating, enjoy the birds on your windowsill. This is simple and perhaps simplistic, I know; but I do think we women tend to rush from one project to another without thinking of nourishing our souls and coddling our bodies. Even small things can make us feel better; do some really nice things for yourself.

    Love,

    Annie

    PS: Load up on mega doses of vitamins too! When I was exhausted from worry in North Africa, I found that high doses of the Vitamin B complex helped both my aches and pains and my mental state.

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  • otter
    otter Member Posts: 6,099
    edited May 2008

    Ah, twink, that must be terribly frustrating, when you're past the major hurdles and think you should be back to a "normal" life.  I can't offer much in addition to what your triple-neg sisters have said, except to tell you that those of us with a few more "plus" signs in our sig lines are sending vibes of love and strength your way, too.

    otter 

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  • nosurrender
    nosurrender Member Posts: 2,019
    edited May 2008

    Dear Twink,

    I am so sorry you feel so bad.

    I am wondering a few things -

    have you had your thyroid checked? I know the first time around with cancer I was having a really hard time bouncing back from chemo and rads and it turned out that the rads had affected my thyroid. Once I was on Synthroid for a couple of months, I felt so much better.

    Also, is the flying affecting your ears? Maybe you need a good ENT to check your ears out because they can make you feel very nauseous and dizzy and flying only makes that worse.

    The heaviness in your legs, are you retaining water?

    My chemo ended in December and I have been feeling like a battery that is running out. I cannot do half the things I used to be able to do in one day that I used to physically. I think we need to heal from the assault our bodies took.

    I have noticed that my general all over body aches have greatly improved since I got my vitamin D level back to a normal level. I would definitely get my vitamin D level checked and if you are deficient they can give you a boost of 50,000 ius to take once a week for a month and then you take regular supplements. Plus, with all the new research out- we really need the D to keep our cancer away.

    I really hope you feel better!

    (((Hugs))))

    love

    g 

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  • smithlme
    smithlme Member Posts: 1,322
    edited May 2008

    Twink,

    I know the achy feeling all too well. My chemo ended in August but I've had three surgeries since then. Some days I wonder if my body will ever stop hurting. I had a bone scan and the results came back fine, so I now have a base line for the future.

    As I recover from a surgery I start to walk on my treadmill. I then discover more aches, as I use muscles I haven't in weeks. My Onc suggested that my body is readjusting itself from the weight shifts from surgery. First one breast was removed so my body shifted to compensate, then I had a failed TRAM flap, followed by another Mastectomy. My body keeps changing, even though by small amounts of weight. I am now anemic, so add that to the mix and I'm one achy, grumpy woman!

    Moving is a huge stress and lifting all that extra weight can make already sore muscles and joints worse. Treat yourself to a nice massage to work out the kinks...

    Linda

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  • twink
    twink Member Posts: 1,574
    edited May 2008

    You women are great.  Of course, the only possible cause that comes to my mind is the dreaded one we all consider at the root of new aches and complaints.  I'm off to my PCP again in an hour, this time armed with a few real possibilities to explore.  I have revision surgery scheduled for June 5th and have seriously been considering delaying this additional stress on my body.  I keep thinking that there must be a pill to make me feel better but just knowing that I'm not alone in my misery does help immensely. 

    t

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  • twink
    twink Member Posts: 1,574
    edited May 2008

    You won't believe this one... my PCP is sending me for a full-gamut of bloodwork (just after the PET/CT tomorrow... such fun), BUT, she thinks my complaints are all SEs of Chantix (a smoking cessation drug I've been taking for a few months).  Ack.

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  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited May 2008

    Twink,

    Maybe this is good news /bad news.  Good it not related to bc bad that it maybe your Chantix.  Keep us posted on what you find out.

    Flalady

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  • Shirlann
    Shirlann Member Posts: 3,302
    edited May 2008

    Hi Twink, I would press a little on this thing.  You could have Fibromyalgia, Lupus, any number of auto-immune thingys, just assuming this is from the cancer dance, is maybe not the best way to go.  Even something as out of the ball park as Lyme Disease.

    Just another idea.

    Hugs, Shirlann 

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  • twink
    twink Member Posts: 1,574
    edited May 2008

    Thanks Shirlann and Flalady, I went for the PET/CT this morning and realized I couldn't go directly for the bloodwork since I needed to be fasting (that goop for the PET/CT blew Plan A).  All good suggestions and I'm hopeful that the full panel will surface what's really going on.  As the PCP reminded me, she's looks at the big picture, the specialists zero in on their area of expertise sometimes to the exclusion of other possibilities.  I still feel like crap but stopping the Chantix seems to have stopped the nausea.. and that's good.

    Hugs.

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  • Negative3Grade3
    Negative3Grade3 Member Posts: 111
    edited June 2008

    Hi, Twink.

    I just saw your message and I just wanted to support what nosurrender said.  I had some hip pains and my PCP had me do a nuclear bone test because she thought I may have had something going on (metastasis or arthritis).  It came out normal.  Then I mentioned it during my follow-up at a major cancer center I went and I was told that it may be osteopenia due to vitamin D deficiency.  I was ordered a blood test to determine the amount of D that my body produces versus what I take as supplements, etc. and I'm waiting to hear what I need to do but I was surprised to find out that my body produced only 5 IUs and all the rest came from outside sources.  I'll let you know what was recommended for my case (the overall score showed me to be in the middle range for levels of D and that is with 1400 IUs, plus 2 cups of goat's milk, plus spinach, etc. on a daily basis!

    Let us know how things go.

    --Christina 

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  • newter
    newter Member Posts: 4,330
    edited June 2008

    Hi Twink,

    My husband took Chantix for a few months.  It worked for the tobacco use but he felt really crappy while on it.  It was a general all over crummy feeling and since he has stopped it (he did wean off it) he has felt normal again.

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  • jdash
    jdash Member Posts: 754
    edited June 2008

    hey gina !  how are you   we need another get together  hope you are feeling better  xoxoxox

    vitamin d is a good idea  i have to check mine

    i have neck and jaw pain for months   all tests were fine except for disc problems   now off to a ortho doc

    think i have TMJ  -which comes from stress  what a shock   ! hahaha 

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  • LisaSDCA
    LisaSDCA Member Posts: 2,230
    edited June 2008

    Hey Twilah, have you heard anything back from your scans last week? Did you have the blood work done yet? Thinking good thoughts for you, girl!

    Lisa

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  • twink
    twink Member Posts: 1,574
    edited June 2008

    I had the PET/CT scan last Thursday.  My onc appt isn't until June 18th and I'm not sure what to do.  Call and ask for the results on the phone.  What if the results are bad?  I can't stand the waiting but I don't want to hear anything bad right now.  I still feel so crappy I can't believe it.  I'm falling apart and it's wearing on me.  Pains in my legs, hips, back, arms.  My underarm on the prophy side seems swollen now and is very tender.  I have revision surgery scheduled for Thursday and I don't think I should be going through with it because it'll just add to my miserableness.  I cancelled my travel plans this week so I'm going for the full blood panel tomorrow morning.  I quit the Chantix over a week ago now and I don't notice any improvement at all.  My ears are plugged most of my waking hours.  My mouth tastes lousy.  Lately I get up, go to work, come home early and go to bed.  I still wake up exhausted.  Every muscle is tired. I'm fighting borderline nausea most of the time.  I'm tired of feeling so bad and it's getting me down.

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  • Harley44
    Harley44 Member Posts: 5,446
    edited June 2008

    Twink,

    I don't have any ideas about what could be causing you to feel so crumby, but I just wanted to pop in and send you lots of HUGS and prayers, that it's not related to anything bc... 

    Thinking of you, and praying that you find some answers, and that it's nothing serious.

    HUGS,

    xoxo

    Harley

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  • LisaSDCA
    LisaSDCA Member Posts: 2,230
    edited June 2008

    Gosh, Twink - I certainly wouldn't even consider surgery until I had someone, somehow figure out WTF was going wrong with my body to have it feeling so punk! Do you have a GP or internist you could get in to see? You have got to listen to your body - you know this ain't right!Surprised Sure hope that blood workup includes the FULL thyroid panel and a thorough autoimmune check, too.

    Let us know what's up. And maybe take the rest of the day off? And have ice cream?Wink

    Lisa

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  • jdash
    jdash Member Posts: 754
    edited June 2008

    hey twinks

    dont panic- they will figure out what it is probably from blood tests and i am not a doctor but it doesnt sound like its bc related to me- we go thru so much after our dx and tx and our bodies take a beating

    seems like you may have something like epstein barr related go have your blood work and get to the bottom of it so you can feel better -

    BIG HUGS- dont you have to go for preop for the revision ? dont put yourself thru surgery til you are feeling better

    j

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  • Callygee
    Callygee Member Posts: 98
    edited June 2008

    beaming healing and light to you - you WILL figure out what's going on!

    I vote for stopping the no smoke meds, eat fruits/veggies/protein, take vit/min supplements,

    & bug your doc for earlier scan results!!!!

    Is meditation something possible for you?

    You are strong (however tired) and you WILL get through this.

    You WILL!

    -Cally





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  • Sadie-Rose
    Sadie-Rose Member Posts: 222
    edited June 2008

    Twink,

     Just wanted to let you know I was thinking about you this morning.

    I agree with Cally about bugging your doctor for earlier scan results. 

    When I do an MRI now, I request to see the doctor reading the scans before I leave.  She obviously has to do a more in depth look at everything, but she tells me what her first glance shows. 

    I know it is kind of a push-pull situation.  You'd love to hear good news now, but you don't want to hear anything negative at this time with so much going on.

    Hope you find a few moments to rest today,Cool

    Warmly,

    Sadie

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  • Harley44
    Harley44 Member Posts: 5,446
    edited June 2008

    Twink,

    I also think you should bug your dr. for your results NOW, and not wait til June 18th...  I also think it still might be the NO SMOKE drug you took.  Drugs cause all kinds of se's, and they are sometimes really scary!!

    Hugs

    Harley

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  • CaNatalie
    CaNatalie Member Posts: 70
    edited June 2008

    Hi Twink,

    Just wanted to let you know I am thinking of ya and sending lots of peaceful and healing thoughts...hope you feel better soon and get some answers asap!

    Natalie

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  • twink
    twink Member Posts: 1,574
    edited June 2008

    My bloodwork results came back.  Good news is my cholesterol measures are simply fantastic.  Nice.  Bad news or, at least news that requires further investigation:

    Platelets are low, liver function is off and so is thyroid. 

    As I was typing this the onc call with the PET/CT results.  Appears to be back in mediastinal nodes, liver, lungs and spine.  MRI and possible biopsy planned for tomorrow or Friday.  I'm checking out of here for a bit.  Thanks girls.

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  • AnnNYC
    AnnNYC Member Posts: 4,484
    edited June 2008

    Twilah, I'm keeping my fingers crossed that followup to PET/CT comes up with a better interpretation -- thinking of you.

    Hugs,

    Ann

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