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

Hi Twink~

It's strange...I was thinking about you today, and accidently pushed bc.org, and there you are! 

Think twink, think Twink, think twink...

I have had the exact symptoms you are describing; in my case the fatigue, deep aches, joint, muscle, hip, shoulder, chest, hands, feet, legs, began during Radiation Treatment, Oct, 2006.  I questioned the physicians about this overall fatigue and joint/muscle pain, and everyone blamed the other for initiating this "myalgia", as well as skin "yeast infection", the anemia, and I love this one: "your pre-existing conditions before discovering your breast cancer lump".  

As your hormones, enzymes, proteins, glucose, white and red blood counts fluxuate, so do the aches and pains; they come and go; depending on wellness, emotions, eating, exercise, and how you manage your overall schedule. 

This continous  fatigue, leg , neck, chest, hip, nerves, and overall physical disfunction and exhaustion lasts sometimes, for weeks.  Then, it's gone, I feel good, and as soon as I neglect my body, it's back to the aches, pain, and exhaustion.  The pre-existing conditions I experiences were (as the Rad's people love to tell us) a walk in the park, a piece of cake, a whole different ball game!  This pain is deep, frightening, and generally swept under the carpet, ignored, forgotten.

I have some disc problems in my back from a serious accident years ago; realistically speaking, severed nerves due to surgery, allergies to chemotherapy and mysterious surgical mishaps with a broken rib, hematoma, seroma, and the cummulative effects of Radiation incombo with everything else; its no wonder! 

Eratic blood pressure,  high, low, high, normal...I keep asking the same questions, and reading so many others's responses to the same diagnosis and treatment, so similar.

I was advised: "You are likely suffering from stress, fatigue, a lack of sleep and rest.".

Following this (whew) advice, plans are in place for consultations with an entirely new group of physicians and specialists. Something has to change, or at least give me a clue, what is going on? 

A recent visit with a wonderful Breast Oncologist, and his years of expertise have convinced me to try a new approach in getting well, or at the very least, give it a chance, since I'm feeling worse daily and getting no help, no answers, no medication, and no compassion.

After I completed treatment, I felt as if I'd stepped through the broken elevator door, and I've been falling since that time.  I hear the echoes of "are you okay?", but continue the fall, and I'm not seeing an airbag or a swimming pool to land in...just dark places with ambiguous tension and a closed doors.

So, I would suggest getting a second opinion from another group of doctors; you should not be suffering, and the nurses and doctor at my Oncologist's office advised me to get a fresh opinion.  Sometimes finding a new approach to dealing with the aftermath of treatment helps you to see it from a new point of view.  Crawl out of the elevator shaft, and breathe some fresh air.

I don't know who to believe, really.  Are these side effects temporary, or will they continue as some learn to live with the overall blood, bone, tissue and nerve damage?

Where have you moved to?   I was wondering what happened to you, and how you were doing after treatment.   Take good care of yourself, and if I find out anything new in the near future (seeing a long list of specialists), I will report any and all pertinent information, promise!

(((gentle hugs)))

love,

Indi

Twink,

I'll be keeping you in my prayers, and hoping that after further tests, they find that all is clear, and it was just an 'inflammation', and not bc mets...

Sending you LOTS of positive vibes, and happy Benign thoughts !!

HUGS
Harley

PS  I know you said that you'd be away from the boards for awhile, but if you do check in, please know that I understand, and I'm sending you love from HOT and HUMID North Carolina!!!

Hi Twink,

so sorry to hear how miserable you are feeling.  i wonder if some of the aches and pain could be mood related?  i know that i am struggling with depression and a generalized let down feeling these past few months and at times my whole body just seems to hurt...hope all results are 'negative' and that you are feeling better soon...

love,

Holly

Oh, Twink - so awfully sorry to hear about the reading on the PET scan. I can only imagine the 'kicked in the teeth' feeling you must be experiencing. God, there is nothing I can say except I am here for you in anyway I can be.

Guess there was a good reason you felt so sucky.

Lisa

Hi Twink,

Just thinking about you and wondering how you are doing tonight? 

Warmly,

Sadie

*****Bump*****

Hi Twink, I was just wondering how you were doing. I haven't been on very often since my move to Dallas. It's been crazy busy trying to get everything in order and, I've been completely distracted since I found out my f*ing insurance won't follow me to Texas. Still don't know what I'm going to do about that but...whatever, I'll worry about that tomorrow.

Somebody sent me the cutest pig email and I thought of you!!   So, I just jumped onto the board and wanted to say I hope you are doing o.k.

Hugs, Traci

I'm so sorry your going through this sh*t again. So sorry. It just sucks. I wish there was something I could do to take it away girl. With all my heart and soul.

Your moving to Dallas? If I knew that before, I forgot it.  Oh girl, I would LOVE to meet you in person! I'm sure you are even more a blast live and in action. I really like it here so far. Although, it sure gets hot here. My car temp has read over 100 numerous days in the past month 1/2 that I have been here and, it's rained twice. Literally.

Hang in there girl. We are right here beside you when you need us!!!! ((((((hugs)))))))

Traci

I know it doesn't help with the heat, but welcome and soon-to-be welcome to Texas, Traci and Twink.  There is a group of at least 8 TNBC ladies in Austin  (+2 in Temple/Belton) who appear to be staging a get-together, possibly in August.  Wish I could be more helpful but I hope all goes smoothly with your move(s), physically and insurance-wise (sounds like maybe not!).

love

dana

Hi Twink,  I have thought about you often, wondering what was what.  Then suddenly there was a post so I thought I'd come by and say HI.  Big giant HUGS from me, too.  Gitane

Hey Twink, knock this off!  You have been through enough already.  Damn disease. I just hate this.

Take care of yourself, honey, love, Shirlann 

Hi twink, I'm sorry your feeling so bad, understand and hate that it's happening to you.  Can you get a bunch of scans done just to check that everything is okay.  I really hate this cancer crap, its just giving and giving and giving.  I'm sorry.