new to message board, need to vent.............

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New Member

Date Joined Nov 2004
Total Posts : 2
   Posted 11/29/2004 8:11 PM (GMT -7)   
Hi all,
New to this site, and needed to vent a little frustration.
Dx 7/2001 2.5cm her2+ er+pr+ right mastectomy with tissue expander.  33 rads, 6 months chemo, daily Femora.
Well after using my left arm (i have stage I lymphodema in my right) I had to have surgery 2 weeks ago because my two left fingers, and side of right hand were numb.  The pain hurts, my elbow is still stiff, and now with the cold weather the arthritis i have from my meds has kicked in high gear.  Especially around the knees, ankles, and back!!
Did I mention i'm 43!!  Had my cancer been diagnosed right to begin with from an unnamed CANCER CENTER, I would not have all this to go through. Oh yeah, thanks to chemo, i now have to wear eyeglasses. Menopause is part of the package too, lucky for me I have a good Ongologist (female)
Talk about being disabled.  Both arms are good for about 20 minutes.
I was very positive in the beginning of all this, and today is my turn to be negative about breast cancer.  I wanted to stay away from the negative.... that was my coping mechanism..
But today is anger over my cancer.  Probably because of all the body aches.
Those ads they show in magazines make it look like chemo is a walk in the park with "new meds".  Chemo is chemo, bald is bald, weakened immune system, low blood counts.  Who feels like running from one dr to the next for second opinions? Why should we have too? Who has the money for co-pays, not to mention will your insurance cover it!!!!! 
Drs should get it right the first time!!!  Exspecially the high risk group!!!!!! 
Then all the medical problems after treatment ends.  Cancer does not stop when it is taken out. After effects start.
To end this vent page
I'm still alive today to care and love my children and grandchildren.

Veteran Member

Date Joined Jul 2003
Total Posts : 2044
   Posted 11/29/2004 8:59 PM (GMT -7)   
Sorry you are having such a difficult time right now, but it is all right to come her to vent your frustrations and anger. That's what a place like this is for. Welcome to our corner of the world. I hope tomorrow is better for you. It is great to be alive for those children and grandchildren. Hugs, Lauri
"Go confidently into the direction of your dreams. Live the life you always imagined" Thoreau
Life is not measured by the number of breaths we take, but by the moments that take our breath away.

Regular Member

Date Joined Sep 2004
Total Posts : 141
   Posted 11/29/2004 9:05 PM (GMT -7)   
Know how you feel.  I was misdiagnosed in 1996 with a fibroadenoma and left to wait six months until left breast had a ripple in it and 3 lymph nodes were cancerous.  Then, after all that, my mammograms were misread for 4 years.  Just had mammogram in Feb., read as normal, tumor marker up at end of Feb., PET scan showed the tumor under right arm.  You'd think they'd try to get it right ONCE in awhile!  No, I won't have any scans read here in my hometown anymore. 
I'm having the aches and pains also.  Elbows, knees, ankles, and back...I'm older than you - 47 but can't believe the arthritis.  Is it from the chemo and surgeries?  I was wondering.....I figured it was arthritis because it is worse before the cold and rain (also my Mom's family all have arthritis)
Oh well,  we are alive!!!!!  My hair is 1/4 inch long and dark black.... I'm loving it!!!!!!!  Can't wait to get rid of the rug!
Teresa King

Veteran Member

Date Joined Jul 2003
Total Posts : 1090
   Posted 11/30/2004 8:36 AM (GMT -7)   
It took me from May to Nov. to prove I had cancer. I knew it. I just did not know how to prove it. One trip to the city and I got sent home with bone scan and blood test papers. He told me if it was cancer he would be calling and to schedule those tests. I have to admit when he took the thin needle out and I saw his eyes I knew I had finally been proven correct. I still must say its one thing to know it and its another to have it confirmed. That is a feeling I will never forget. Yet I knew it. I can not help but wonder what it must be like to have no clue and be told. 24 hours later I am having blood work and bone scan. 5 cm and the local yocals could not find it. Red inflamed and awful. If I knew then what I know now! Icould have saved myself so much. I am sure many more can also tell you stories along the same line. I just hope the next generation of women are raised knowing all doctors are not created with equal abilities. So sorry you had to go through all this. Joyce
People are like tea bags, you have to put them in hot water to see how  strong they are!

New Member

Date Joined Nov 2004
Total Posts : 2
   Posted 11/30/2004 11:46 AM (GMT -7)   
To respond to tking about arthritis.
I don't know if is from chemo hangover (1 1/2 year out) or the femara.
Today is not any better, my three year old is miserable with a cold, and my bones hurt.  My surgery elbow is hurting real bad, along with my back and knees.
i wonder if this is what it feels like to be a senior citizen.

Regular Member

Date Joined Sep 2004
Total Posts : 141
   Posted 11/30/2004 12:19 PM (GMT -7)   
I am also taking Femara.  Haven't asked or looked up side effects of that..... Yes, I'm sure this is what a senior citizen feels like - if not, and it gets worse - God Help Us All!!!!! HA HA
Have to laugh....can't let it get you down for too long.  Have you had the arthritis symptoms since you've been taking the Femara?  I just started the Femara this summer and am feeling progressively Older and stiffer......
I go to onc next week and will try to find out his other patient's experiences....Will let you know what he says.
One thing I like about the Femara and the Prozac that I take....I'm never very hungry!  I am Slowly losing weight that I've gained this year during the chemo.
Have a great day!!!
Teresa King

Regular Member

Date Joined Jul 2003
Total Posts : 200
   Posted 11/30/2004 12:46 PM (GMT -7)   
I'm sorry you are in such a down period, but I think we all probably experience what you're experiencing. Hoping things get better for you soon.

NOW, what an interesting discussion about aches and pains, chemo and Femara. I had the chemo and am taking the Femara now and have been having major problems with my knees. I was blaming it on being 56 and maybe it is, but I remember well when my parents were 56 and they didn't have this knee thing. My Mom had arthritis in her hands later in life but not at 56. Maybe it is the Femara. I'll surely run that by my onc. Of course, I blame a lot of things on chemo and rightly so. It changed my immune system. All of a sudden I get warts??? All of a sudden I sometimes break out in hives??? All of a sudden I am alergic to things I was never allergic to before??? And when I was taking Tamox for 5 years, I had leg cramps with some frequency, and since I've been off that for almost 2 years, I NEVER have them now. There must be a correlation.

Everyone speak up. Are others of you younger, my age or older having similar problems?

Anyway, hope I hear from some of you. And I'm glad I could get on the Board. This morning I was told our Board didn't exist when I tried to log on. Had to send out the emergency emails to MaryK and Jo-Ann!

Hugs to all, Glenda

Regular Member

Date Joined Sep 2004
Total Posts : 141
   Posted 11/30/2004 12:52 PM (GMT -7)   
Hi Undefeated,
Yes, the knees are the absolute worst part of the joint pain.  I have trouble bending down and then getting up because of the knees.  I hurt in all my other joints but the knees...........

My mom is 68 and she doesn't have knee problems like me and she has osteoarthritis!!! 
I think it's the meds, although the onc may not want to say it's so!
I've always had problems before rain or cold weather but it was very minor - take an Advil and I'm fine.  Now, I could take a case of Advil and still hurt!!!
I'd be interested to know how many others on Femara are experiencing these symptoms.
Teresa King

Veteran Member

Date Joined Jul 2003
Total Posts : 2921
   Posted 11/30/2004 1:08 PM (GMT -7)   
Nothing makes me angrier than a misdiagnosis of a young woman. NOTHING! I know I am one of the very lucky ones as far as breast cancer goes, but I managed to get an infection post surgery that has left me a mess with a huge abdominal hernia. So I guess I can qualify to complain and fuss, too??? I know what you mean about the warts, Glenda, I have some and some moles and skin tags..... I never had those things before all the antibiotics and a compromised immune system. So far I have been lucky with no lymphedema problems. I have not taken a lot of the medications others have either, but I am here to shout, scream and yell that women need to be listened to, given a biopsy, and taken care of properly. You can come and complain anytime. I can't imagine feeling as you do and having a three year old to deal with. I am so, so sorry. Hugs, Mary K.

Veteran Member

Date Joined Oct 2004
Total Posts : 826
   Posted 11/30/2004 9:45 PM (GMT -7)   
I am so glad to get this information from you ladies, because I had my first chemo session today.  Now I know more about what I MIGHT expect, so I don't freak out.  I can't imagine, either, what it must be like to have those aches and deal with a sick 3-year old.  I don't have children, so I can't imagine dealing that when I felt OK.  LOL  I hope it gets better for you.  By the way, I'm 44 and had a simple mastectomy on the right side on Oct. 21.  

Veteran Member

Date Joined Jul 2003
Total Posts : 857
   Posted 12/2/2004 4:47 PM (GMT -7)   
hi misd. -
welcome to the board...sorry you have to be here.. yes you have every right to be mad... i truly believe it is only when DEMAND the best care that we really get it. i was misdiagnosed as well... had a mammo AND an ultrasound... told "oh its only adipose tissue not even a cyst".. no followup was even recommended. four and a half months later the tumor was FINALLY found... and it was huge and when i finally had surgery (5 weeks later) it was 4.5 cm. i was 34 at the time. now i'm 37 and dealing with all the lovely sideeffects...lymphedema, etc. but at least i'm here, no thanks to the medical community. except for my onc, who is fantastic, i take all other interactions with dr.s with a huge grain of salt. sad that it has to be that way. but they dropped the ball once already! can't trust them with it again without being really thorough.

good luck with your arms, and i hope you find relief for your pain soon....
"It's been worth everything I've been through,
 To do what I do"

                       To Do What I Do   -Alan Jackson, 2004

Veteran Member

Date Joined Jul 2003
Total Posts : 702
   Posted 12/2/2004 6:24 PM (GMT -7)   
Re: Femara and joint pain. I take it too and for the most part have had no awful side effects. However, my knees and ankles often hurt like the ****ens. So, I DID run this one by the onc. early this summer. He said that Femara, although a very good drug for fighting cancer, "sucks" calcium from the bones. He upped my daily calcium from 600 mgs. to 1200 mgs. I also take Fosamax for OSTEOPENIA, not osteoarthritis in the left hip joint. It's the osteoarthritis dose (70mgs) once a week. With all of that extra bone building stuff wouldn't expect to have a single pain, right??? But I shudder to think what would be going on if I didn't take all these extra supplements. So you're not imagining the pain, my friends, and we're not only suffering the normal aches and pains of aging. Because of chemo, which ages the body a minimum of 10 to 15 yrs when you have it (read that in a recent newspaper article on the Science page) and all of the add'l drugs after tx we are indeed dealing with far more than the normal, cancer-free individual has to cope with. Hope this helps. Thankfully, we have each other to bounce all of these things off of. Oh, where would we be w/out this board. Love & hugs, Luci
Sometimes it is a slender thread, Sometimes a strong,
stout rope; She clings to one end, I the other;
She calls it friendship; I call it hope....

Regular Member

Date Joined Sep 2004
Total Posts : 141
   Posted 12/2/2004 7:09 PM (GMT -7)   
I hate to hear that other's feel like I do with all the aches and pains but it's nice to know that it's pretty normal for us.  I was beginning to worry that I had bone cancer or something - although my PET was normal and blood work was normal....  I appreciate everyone sharing their experiences - it makes it a lot easier to cope.
Teresa King

Jeremiah 29:11 - "For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future."


Veteran Member

Date Joined Jul 2003
Total Posts : 1564
   Posted 12/2/2004 9:18 PM (GMT -7)   
Okay, I'll jump in on this one. Thank the good lord or pharmocologist or whoever is responsible for Celebrex. I was suffering from osteoarthritis BEFORE I was diagnosed with cancer, and I was only 36 at DX. Getting out of bed in the morning was pure agony for me. Chemo didn't make it worse or better, and I didn't do the Tamoxifen or Femara thing. But Celebrex really changed my daily pain levels. What chemo did give me was: menopause at 36, chronic heartburn, which I haven't gotten over yet, but never had prior to chemo, and extra pounds that are still hanging on. Now, a "baby doc" once told me that she had heard that Celebrex causes water weight, and that if I stopped taking it, I might lose some poundage. Anybody else heard that one before? Not that I would trade the loss of pounds for the return of the pain, but just curious.

And of course, we all know that chemo fries a few brain cells. At least I'm smart enough to know I'm dumber than I used to be!

All in all, ladies, you have to's still better than being dead! Carpe diem.

Love and hugs...
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