Calling all TNs

Reality

,,,,addition to my post....I just finished rads last week - this just cannot be happening - not now....I need a break.

Reality

....and that damn "Breaking News" banner has haunted me all weekend - If the mods are reading this, please change the banner - please!  Sorry - losing it for a moment.

TryingToSaveMom

Hi,

My 71 yr old mom was diagnosed with Invasive Ductal Carcinoma in October and had a modified radical mastectomy of the left breast on Nov 10, 2011. She found the lump herself between regular yearly mamograms. The tumor was approx 3.2  size, grade 3 with 8 nodes affected. I think this means she's a stage IIIa. On Dec 20 her oncologist informed her that she was triple negative. Bone scan, lungs and chest x ray were clear and she was also sent for CT scan of liver, abdominal ultrasound, echo cardiogram and EKG. She is awaiting the cardiologists report and should learn the test results from her oncologist at an appoointment on Tuesday. She's been told by the oncologist that if the cardiologist thinks her heart can take it, she'll have 16 weeks of dense dose AC and then T chemo ( every two weeks) followed by radiation. I don't know for how long. Mom doesn't have heart disease but has had tachycardia (rapid heart beat) since she was a teen and takes medication which controls it. We're very worried about the chemo and wonder if any of you have been through this and what should mom expect.

Thanks in advance for your help.

"Trying To Save Mom" in Ontario Canada

Lynn18

Anandagram, it would probably be best to get your lump checked out as soon as possible. Hopefully it will turn out to be nothing, and then you can relax.



Laurajane, So good to hear you are feeling better. Hope you feel even better tomorrow and yes, get that passport.

Reality

Thanks, Lynn. I will have it checked soon. I have checked it so many time tonight - It really seems fibrocycstic - I will stay positive. 

Babs37

TryingToSaveMom- First of all, welcome and I'm so sorry for your moms BC diagnostic. If it can help a bit, my grandma went through chemo at the age of 76 and did REALLY well. We could'nt believe it! It never stopped her. Yes she lost her hair but she had bought a beautiful wig and when she wore it, you couldn't even tell what was going on. Wishing you and your mom all the best. Hang in there. Hugs.

Luah

Tryingtosavemom: Welcome, I'm in Ontario too. It sounds like your mother is in very good hands, and is going through all the usual test protocols. Please don't worry too much... if they determine her heart can't take the AC-T (and it's the "A" adriamyacin that's toxic to the heart), there are alternatives. For example, FEC-D in Canada is very similar and, as I understand, has much less heart toxicity from the "E". Also many women here have done TC (no "A").

Have been trying to catch up on all the posts - what a lively group, love it! Welcome to the new ladies... you'll find support here, ask away and we'll try to help... we're also very good at commiserating! 

LJ - so glad to hear you're feeling better. A good omen for that new regimen I think.

Suze: Wow, pneumonia sucks big time on top of everything else - though definitely better than some of the alternatives  . Two of my good friends just came down with it, though thankfully they don't have the complications of trying to get through BC chemo at the same time. Rest, rest, rest - and regain your strength. That Disney cruise sounds awesome!

Lovely: I understand the fear, but as the others have said, it could be so many things. Hope you get definitive answers soon (and honestly, I don't understand why the doc goes into all that negative stuff before you even know what's up - shaking my head on that one). Chin up!

Linda - you're such a gem; wishing you all the best.   

Titan: too funny on the MRI - I've got one tomorrow - will be thinking of that while I try not to move a micrometer.  

Also, good thoughts to all of you in treatment, hoping SEs are manageable.   

ksmatthews

Does anyone else have weak/ sore muscles?  I was doing an activity for 20 min. yesterday that involved squatting and today I can barely walk, because my leg muscles are hurting so bad.   I also notice if  I sit for a long period of time that when I get up I am like an 80 year old woman.  I called my Onc office and the nurse just told me to take ibuprophen.  Is this normal for us?

inmate4232010

Oh F****ing Crap!  Just got a call from Dr K about some blood work.  It seems I now have an anomaly with my liver.  Seriously?!  This is supposed to be my celebratory last week of chemo.  WTF?!  Man, I just want to finish one round of treatment before some other crap pops up.  I'm getting tired!

In addition to prepping for my last Methotrexate/Navelbine/5-FU and leucovorin shots I now get to go for a PET and bone scan.  My MO is big on scans and I am happy for that.  Just not happy to HAVE to get them so often.

Here's to a good day for all, no matter what gets tossed your way!

Hope60

ksmatthews - I don't know exactly where you are in your treatment, or in your recovery from treatment....but I think this is pretty normal.  Treatment takes a lot out of you and it takes time to regain your previous level of strength.  I finished chemo/rads in March 2010 and had muscle soreness, weakness, stiffness, etc for a long time.  Took at least 6 months before I started feeling more like my old self physically. 

ksmatthews

Hope60 I am 6 months out from chemo...this really sux.  I can barely walk today.  From a 20 min activity.  Ugh!!

mccrimmon324

Inmate, I'm so sorry!  Did you have to get the Pet/Bone Scan prior to your Liver anomaly?  Thinking of you and all happy results.

Ksmatthews - I feel like an old woman!!  I started doing my eliptical daily and I thought it was from that but everyone is saying its from the chemo too.  I wake up in the morning and litteraly shuffle, can't stand up straight.  It takes a good minute to get moving.  I sit at a desk all day at work and my back/legs stiffen up unbelievably too.  I've noticed maybe the last 2-3 days it hasn't been agonizingly painfull so maybe it's starting to go away? 

I've also started taking an asprin everyday, sure that helps a bit.

journey4life

Anandagram - get it checked out sooner rather than later.  It'll go a long way to ease your mind and reduce your worry.

TifJ

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

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

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

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

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

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

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

ksmatthews

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

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

mccrimmon324

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

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

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?

Anonymous

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

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

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

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

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?