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Calling all TNs

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Comments

  • TifJ
    TifJ Member Posts: 804
    edited January 2012

    KS- i am a year out from chemo and still feel like an old lady. I just don't have the stamina I used too. I am exhausted after just a little exercise!

    Inmate- I hope that this is nothing and your scans go well!

  • Hope60
    Hope60 Member Posts: 150
    edited January 2012
    ksmatthews - I remember when at your stage of recovery....I sat down on the floor to work on something for a little while, and could not get up!!! Legs/knees just wouldn't cooperate!  I live alone, so had find a creative way to hoist myself up.  Probably looked pretty funny, but didn't feel that way to me at the time!  I know it's frustrating, but hang there! It will get better.
  • tracie23
    tracie23 Member Posts: 214
    edited January 2012

    inmate, I really hope it's nothing... when is your PET scan? I am sending happy thoughts your way... stay calm :) keep us posted

    As to the other ladies about being weak.. when I first finished chemo back in Feb 2011  It took me 10 min just to get up out of a chair , I do pretty good know except if I am in one position to long or sitting on the floor I can barely get up and than walking after that I look like I'm 90. But I did start at curves working out in March of 2011 so that has helped me a lot. I hope you start feeling better soon

  • inmate4232010
    inmate4232010 Member Posts: 288
    edited January 2012

    Thanks all.  I have a scan set up for tomorrow.  My MO is very quick!  Turns out we are going for the MRI/bone scan. 

    Mccrimmon.....yes, I have had two (maybe one more, I can't remember) PET scans since my first diagnosis.  I was to have another two weeks after my last infusion (which happens to be this thursday).  Depending on the results of this scan I may have to wait on that PET.

  • Luah
    Luah Member Posts: 626
    edited January 2012

    Inmate: fingers crossed for you... chemo's tough on the liver, so hoping it's just related to that, and you get the free and clear!

    Re aches and pains, I am 1 1/2 years out from treatment and still feel like an old woman when I get out of my office chair after sitting for 30 minutes or more. I run/walk 2-3 miles in intervals, and find I can't get past 2 minutes of running, no how, cardio's just not there. Maybe it's older age creeping up, maybe it's chemo after-effects even now. Anyone doing yoga? I'm thinking that would help, though I've never been flexible at all.  

  • mccrimmon324
    mccrimmon324 Member Posts: 794
    edited January 2012

    Hope60,

    My hubby like to eat dinner at the coffee table so we can watch tv while we eat ( I hate this and believe we should be eating at a table w/o the tv ) After I'm finished eating, it takes all of my energy and strength to pull myself up and flop myself down on the couch.  It must be the position we sit in that does a number on us.  Now picture me trying my best to look nonchalante while hoisting my fat a** up on legs that aren't working.  LOL 

    Ksmatthews, I forgot about that, that is not getting any better yet. 

  • journey4life
    journey4life Member Posts: 223
    edited January 2012

    Inmate - good luck tomorrow...sending positive vibes your way.

  • ksmatthews
    ksmatthews Member Posts: 743
    edited January 2012

    I read something about Connective Tissue Disease, I wonder if that is what it is?  I tried walking 2 miles a day, but I just couldn't do it, went roller skating with my kids one night and only could do one lap cause my muscles were burning!

    I have been on the couch all day!  Hurts to bad to move! 

  • mccrimmon324
    mccrimmon324 Member Posts: 794
    edited January 2012

    ks - can you try ibuprophen, asprin etc and some mild stretching thru out the day? 

  • mccrimmon324
    mccrimmon324 Member Posts: 794
    edited January 2012

    Not really sure if this link will help but I googled leg muscle pain after chemo and just chose this site. 

    http://www.livestrong.com/article/358251-leg-muscle-stiffness-from-chemotherapy/

  • Babs37
    Babs37 Member Posts: 320
    edited January 2012
    Inmate- Good luck with your PET scan tomorrow. One time my liver enzymes were elevated when I was on chemo but it went back down the next week after.Could it be just that? Chemo and all the the meds we take during chemo are really hard on our liver. In november, I asked for a liver scan with contrast because I had little twinges in there sometimes and it  scared me to think something was going. The scan revealed that there was a spot of what they believe to be "fatty liver" and that I would need to have an US to see better. The scan mentionned there were no mets. I am still waiting for the US!!!! It's always long in Quebec to have an appointment for scans of any sorts and with the holidays it makes it even longer. I am just praying that they saw right and that it's just fatty liver...................... Sending you good vibes for tomorrow. Hugs.
  • mitymuffin
    mitymuffin Member Posts: 242
    edited January 2012

    KSMathews, I'm a year out of treatment and my muscles still don't react normally. The treatment gave me something like a connective tissue problem or fibromyalgia and it can really hurt. I've taken Zipsor for the pain, and it's much better now than it was 6 months ago. It's weird but I don't let it stop me.



    Inmate, I hope all goes well for you and all scans are perfect!



    Anandagram, get it checked out.



    LauraJane, loving thoughts your way.



    Suze, how are you feeling?

  • HeidiToo
    HeidiToo Member Posts: 965
    edited January 2012

    Yesterday I was able to mount my17 hh warmblood (it's a horse...not a man lol) without needing a rocket launcher.

    I say this because for at least two years after chemo I either had to get a leg up or use a mounting block. This is HUGELY liberating for me!

    So, don't give up hope. I had just about resigned myself to feeling/acting like an 80 year old woman for the rest of my life when, suddenly, POOF!... I felt *fine*.

  • TifJ
    TifJ Member Posts: 804
    edited January 2012

    Thank goodness I am not the only one that can barely get up off the floor when I've been sitting there awhile!! Not that I'm saying, I'm glad all of you can't get up either- I just don't feel so bad knowing I'm not alone!!

  • Lovelyface
    Lovelyface Member Posts: 563
    edited January 2012

    I apologize for my long posting....... 

    I am 1 year, 4 months out from surgery and I still feel like an old woman, huffing and puffing just walking to get coffee at work.  If anyone can remember I posted many times about my hand pain/numbness which was a side effect of aridimex mid last year.  I wouldn't doubt it for a second, if my neck pain has emerged due to the aridimex, not a side effect per say, but aridimex almost killed me.  It depleted my body of something.  My Onc. is so stupid to give me anti-hormone for just a mere 5% PR positive case.  Honestly, this is a lesson for us TN's.  If you have a really small positive, don't take anti-hormone, it will destroy your muscles and joints.

    The update on my case - I have been taking lorazapam for at least 11 months now, 1 mg. every night for sleeping. It gave me a really good nite sleep, so continued to take it. Nobody monitored me and I didn't care.  In 2011 I took 237 tabs.  Anyway, when the neck/head pain was really bad on Jan 1st, I googled and lo and behold found lots of people having neck/head pain as a side effect of lorazapam.  Who would have thought?  I am usually always checking things out, but I am shocked at myself why I did not google before Jan 1st to see if this could be a side effect of the only drug I am taking after my BC treatments.  I am not waiting for my body to normalize as I stopped it cold turkey.  I truly hope that the pain is coming from inflammation or something due to the pill.  Has anyone else had a pain from lorazapam?  I thought this was a really good, nice, calm pill with no side effects, but maybe I was wrong.

    I stopped on Jan 1st and today is the 9th, I still had the pain this morning.  It is just like a mascular pain.  Upon wake up for several hours I hurt in my neck/head area and upper spine.  I also feel breathless when the pain comes, kinda weird.

    Anyway, thanks to all you wonderful ladies who responded - I will keep you updated.

    Suze, my friend, how are you doing today?  You gotta get better soon as February is just around the corner and you are going to make it to that Disney cruise, can't wait to hear all about it.  Glad to hear that you don't have pulmonary embolism.  Hope your heart rate is down and normal today, sending you wishes for a very speedy recovery.  Are you back home tonight?

    Laurajane - you are such a strong strong woman, I hope and pray that all your days will be great ones.

    Christina1961 - that was a wonderful blog about positives about negatives.  Loved it about the 90% stats.

    Anandagram - Oh dear, I surely hope that the lump is from the rads.  Maybe it is a reaction.  I have had a lump like thing, however, 5 doctors & nurses have checked it and they all said it is a scar tissue.  To me, it feels exactly like a lump.  This will be clarified soon in an MRI of both, which is end of January.  Maybe yours is just a scar tissue from Rads.

    Regarding the conversation about genetic counsling on the BRCA tests - well my insurance denied it at first.  I have only one first cousin in New Zealand with BC diagnosis. I have never been able to get any info. from her regarding what stage or exactly what it was.  After insurance denied my BRCA - I found out I had another cousin in Fiji, who had died from cancer.  I did not know what kind of cancer, so told my genetic counselor.  If you have two people in your family, one with BC, the other with Ovarian, BS will okay your test, which is how mine got authorized. Unfortunately, my testing revealed "inconclusive".  "Inconclusive" because something hasn't even been studied yet.  One reason is that most of the testing is done from Caucasian population, and I am East Indian, so there is data lacking or something like that.  After going through a lot of hassles with insurance company, my test was "inconclusive".

    Mitymuffin - thanks so much for the info. that TN rarely goes first to the bones or brain.  Where then does it met to?

    Survivor2Be - I used wrong terms in my posting - I meant to say "mets" is what I am scared of.  It is not "recurrence" since the pain is in the neck/head, not the breasts.

    Mccrimmon324 - I hope it is a pinched nerve.  I am going back to my acupuncturist.  But first have to do that MRI.

    I just don't want to do any CT or Pet Scans.  Too much Radiation.  That would be my last resort.

  • suzette5956
    suzette5956 Member Posts: 5
    edited January 2012

    I had mascectomy 16 Dec. Oncologist away. Won't be back till 23 Jan,so won't be finding out what my treatment plan is till after then. Is this a reasonable time to wait?

  • suzette5956
    suzette5956 Member Posts: 5
    edited January 2012

    I had mascectomy 16 Dec. Oncologist away. Won't be back till 23 Jan,so won't be finding out what my treatment plan is till after then. Is this a reasonable time to wait?

  • khs113
    khs113 Member Posts: 15
    edited January 2012

    Hi,I've got some questions for those of you TNs who are 2 -3 + years out from diagnosis. I'm six months out from diagnosis. Finished with chemo and rads. Today I saw my onc and she says other than seeing me in September and a mammo and my surgeon in June, that's it for now. I asked her about TI-67 and she indicated that the grade number they give us pretty much reflects the same thing. Does it? Also, asked her about Metformin. She didn't like the side effects and suggested recurrence is less likely to happen to people who lose the fat and exercise at least an hour, six days a week. She doesn't seem to think MRIs, PET scans or CTs are the way to go at this point. Doesn't want to subject me to more radiation. When I asked what I should be looking for she said any prolonged pain that seemed unusual.

    I've already switched to a low fat diet, eat mostly organic everything, no aluminum deodorant, exercising half hour daily. I have a yearly check up with my internist on Wednesday and will ask her to check for diabetes with a blood test.

    Is my onc being too relaxed about all of this? Should I find someone that's a little more aggressive when it comes to preventing a recurrence? Are there more questions/concerns I should be raising at this point? Or am I over reacting? Is it really good news that I'm not being seen or tested by the specialists for 6 months? Thanks.

  • Hope60
    Hope60 Member Posts: 150
    edited January 2012
    mccrimmon - laughed when I read your description of getting yourself onto the couch.  Reminded me of myself, trying to hoist my fat a** off the floor.  ksmatthews - forgot to mention that even though I've improved, I still have problems if I've been sitting in the same position too long, like after a long car ride or when I get up from my desk at work.  Inmate - best of luck with your PET.... sending positive thoughts your way!
  • lrm216
    lrm216 Member Posts: 534
    edited January 2012

    Inmate:

    I am wishing you all the best on your scan and hope it will all be nothing.  I was always under the impression that that liver levels are all out of whack during chemo and for a while thereafter.  I'm hoping that is all it will be.  Will be thinking of you and sending positive thoughts your way.

    Hugs,

    Linda

  • TifJ
    TifJ Member Posts: 804
    edited January 2012

    Lovelyface- Please be careful going off the lorazepam cold turkey. I took it for a year and told my onc I was going to stop. he said you must wean yourself off of it slowly. Every week decrease your dose by cutting the pill in half, then thirds, fourths and then take only one fourth for a week before you stop completely. Stopping abrubtly can cause seizures. You can google stopping lorazepam (Ativan) and it will give you steps to stop.

  • ksmatthews
    ksmatthews Member Posts: 743
    edited January 2012

    I too dont let it stop me, and yes if I sit in the floor I have to roll over on my knees and push myself up.  But the pain I am having today is so bad I can barely get up off the couch. Could be I just overdone it yesterday.  I have taken ibuprophen, mobic, used icy hot and epsom salt bath.  Onc is going to call in the morning.

  • LuvRVing
    LuvRVing Member Posts: 2,409
    edited January 2012

    Khs - I think your MO is giving you the standard of care for your stage of breast cancer.  Really, there is nothing (s)he can do to prevent a recurrence.  The trick is to detect one quickly if it happens.  And for you to be alert to anything unusual that might indicate trouble.  You're on the right track with your diet and exercise.  As for the metformin, your internist can prescribe it if you have a fasting glucose over 100 or an HbA1c that indicates you are above the normal range.  That would be an "on-label" use. 

    To be honest, after 20 months of doctors, scans, labs, surgeries, treatment, etc.  I will be thrilled to not see a specialist for six months!

  • mitymuffin
    mitymuffin Member Posts: 242
    edited January 2012

    Khs, I think your oncologist's follow-up program is pretty common. Some Onc's do scans, but both the Onc's I've worked with only do them if there are symptoms that have been on-going for several weeks. My Onc wanted to see my every 6 months, and I requested every 4 months, but all he does is blood work, and asks me how I'm feeling.

    Ksmathews,  I know that Advil, Aleve etc. don't touch my muscle related pains, but the Zipsor does seem to help. I think it is like a prescription strength Aleve. (?)

  • Titan
    Titan Member Posts: 1,313
    edited January 2012

    hmm..KHS...you saw your onc this month and not again until Sept?  that's 9 months (duh..I know you can count)...

    I dunno  everyone is different..but I see my onc every 3 months..my BS every 6 months...I have the same diagnosis as you...no scans though...a mammo once per year..My onc said that the BS wants me to have a breast exam every 3 months...if my mammo is ok in May..I may get to see the onc every 6 months..I will be 3 years out in March...

    Suze..hope you are home from the hospital soon...

    Karen..you must have really over done it somehow...and yeah aches and pains are perfectly normal...I think for some time...my onc said that breast pain is perfectly normal too..even though any pain in my breast totally freaks me out.

  • mtnbiker
    mtnbiker Member Posts: 34
    edited January 2012

    inmate,

    I had a spot of my liver before starting chemo did ct was a fatty cyst, my liver funtions have been going up every week since chemo X5  in the 200's finally came down this week. try not to worry, I will be thinking  positive thoughts..

  • sugar77
    sugar77 Member Posts: 1,328
    edited January 2012

    I see my medical onc every six months alternating every six months with my GP.  Essentially I get seen/examined every three months and get one annual mammogram. I go on Wednesday to see the MO. Sounds like everyone gets different follow up care.

  • tracie23
    tracie23 Member Posts: 214
    edited January 2012

    I had my last chemo in Feb 2011 and I go on the 26th of Jan for my 1st appointment since than... They told me they don't like to do scans if unnecessary and they said the same thing if you think something is wrong call... So I guess I will have blood work done and that is it...

  • Titan
    Titan Member Posts: 1,313
    edited January 2012

    tracie..they let you go a full year...wow...I don't know if I would like that or not...in one way..once I was done with treatment I wanted to walk out that door and never go back...and then on the other hand...I like the every 3 months exam...I really want to be "set free"...but reading on here..on some of the other threads...I don't think that is ever going to happen.

  • TryingToSaveMom
    TryingToSaveMom Member Posts: 9
    edited January 2012

    Thanks for the encouraging words Babs37. I've passed them on to my mother.

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