Illinois ladies facing bc

zap

Thanks for all the kind words and the PM's about my husband.  It has been a year and I have kept quiet about it as he is a private person.  The cancer was like a sleuth, came out of nowhere and nearly blew me over.  I guess cancer acts like that.

His cancer is so rare that we are pretty much shooting in the dark but I prayed he would get some time and he has gotten it and may get more with this new drug that was only experimental.  It is now FDA-approved in the US (not Canada or some European countries)) No promises here!  I met a guy online who was part of the original study and he is alive aftre five years and he knows a guy in France who is matching his survival time!  We are lucky in that we live near Northwestern in Chicago where one of the doctors is world-known in his field for his work with Sezary (that is the name of this dreadful disease)

I do wish to share what I have learned in the past year.  GOOD medical care is not always guaranteed.  We have had to fight with our insurance.  He was misdiagnosed several times by doctors not familiar with the disease.  A young woman who interned at Mayo spotted it and sent the blood work off.  Her collegues were not enthusiastic as the disease is so rare and the testing is so expensive.  But she did it. You have to be aggressive but not so obnoxiously pushy that they push you off.  You have to research but be wary of your sources and when and by whom they are written by. YOU SHOULD NOT BELIEVE WHAT YOU READ ON THE INTERNET AS TOTAL TRUTH.

Sadly, breast cancer is not considered a rare disease (don't we all wish) and I know you are all getting the best care.  I was never what I would call "aggressive" but I have become more aggressive and less passive when it comes to medical care.  I have learned many other things but perhaps the most important thing I have learned is that we all need mental and physical support.  I wish I had a support group online for my husband as we have for breast cancer right here in Illinois.  I am grateful to Rita for having the intuition to know this was needed and I thank all of you for stepping in (for some daily) to listen and give support to a person you may never meet but on whose words you rely upon so deeply.  Bless you all Susan

camillegal

Susan what a difficult time for u. (((prayers)))

SissyZ

thank you all, so much, I read each post at night and take comfort in you all being there.

doxie

zap, I'm so glad your DH is doing well.  Sometimes there are small miracles.  

cami, are you doing ok?  You hinted at some issues a few weeks ago, maybe it was under the Aromasin topic.  I've not seen much "illegal" from you lately.  You seem to be taking care of us.  Just worried.  

camillegal

Hi everyone--I get behind and when I post I forget LOL

Doxie u'r so nice to think of me--right now I have a bunch of stuff going on with the Drs. and I'm trudging thru it like everyone does, tests. wait,more test. wait--I just take my pain meds and relax.hahha.

Sissy I love the name Corn City, but it does sound like a sacry movie title. I watch them alot.

Timbuktu

Hope everything turns out great cami.  Good Luck!

lago

"Scary movie title" Camillegal you crack me up.

Granted the scariest potential movie title I've heard to date is "We are going to prove our diagnosis of breast cancer!" I wish there was some way the news wasn't so scary. Hate seeing all the new gals have to go through the same set of emotions we all did at the beginning.

Cami Keep us posted

IllinoisLady

All progress is made by people of faith who believe in what is right and, what is more important, actually do what is right in their own private affairs.  You cannot add to the peace and good will of the world if you fail to create an atmosphere of harmony and love right where you live and work. Thomas Dreier

IllinoisLady

Scary movie Cam??? Wasn't that " Children of The Corn "???? 

Susan, you know how I feel about your Dh.  I'll be sending you a p.m. soon, but just to say it wasn't a surprise to me. 

Spring green is showing up here and the temps are starting to stay higher at night....it all means good things.  I'm anxious for the renewal.

See you all later and hope you have a marvelous day.

Love and peace,

Jackie

Rene23

So much wise and supportive advice has already been given out to the new girls, I wish I had something unique to add.  I will reiterate that the beginning of this journey is the worst.  Physically, and emotionally, it kicks your butt and your heart.  But, as evidenced by all the great ladies here, being informed and having support makes it it all a lot easier.  Not easy, but easier. 

Femara kicked me into osteopenia too.  I did do 3 total Zometa infusions, and my numbers stopped dropping and held steady.  At my last dexa, they had improved slightly.  Still osteopenic, but I am taking my Vit. D supplements more regularly, although I waffle between taking 1,000 or 2,000 daily, sometimes none at all when I forget.    I try to get my calcium through diet rather than pills.  A personal choice which we'll see the results of after my next Dexa.  My MO suggested I consider doing Reclast once a year now that I'm done with my AI's, but I'm being purposely non-compliant about that for now. 

Susan, I'm so very glad to hear how well your DH is doing.

My pelvis and hip MRI showed bursitis and traumatic inflammation of the gluteal muscle - Man, was I relieved! , as I'm sure many of you can understand. 

Timbuktu

What do they think caused the hip problem?  What you're describing sounds a bit like what i have, pain in the hip radiating down through the leg.  Could the medications/chemo have caused any of that?

It's almost 2 weeks since I've been off of the Aromasin and the pain is very much improved but not gone.

camillegal

Tim the improvement sounds like it was the stupid drug, I think it does take a little bit to completely leave out system, IDK for real it just makes sense.(to me) WORTH--not much.

Rene good MRI--now we're happy to hear all our bones are cracking and falling apart but it's not cancer. It;s the simple things in life. And alot of u gals use the word waffle, I always want waffles when I read it with butter and syrup--so use the phrase back and forth--there is no food connected to that. LOL

And yes Jackie there were about 5 of them made of the children of the corn--but I bet they lived in Corn city.OMG that's in Illinois.

peki007

Just got the call from Northwestern and my nodes came back as clean.  To say that I am relieved is an understatement.  I have an appointment with the oncologist there next Tuesday and I will see where we go from there.  I appreciate all of the words of encouragement and advice - this group is so inspirational.

camillegal

YYYAAAYYY Peki---So that worry is over, it's a good start---well I think u know what I mean. Now u'll get u'r plan, Tuesday will be here before u know it and u'll get taken care of completely.

dltnhm

Peki,
Yay for clear nodes!!!!

C-squared

WOW Peki.., that is SUCH GREAT NEWS!!!  I am SO happy for you.  Now you can take a BIG, DEEP breath and let it aaaalllll out!!!  Good luck next Tuesday and keep us posted.  YAY!!! 

lago

Happy dance Peki! Ask if  your BS if he ordered did an oncotype test… if not then maybe your onc will order it. Since you are node negative, hormone positive, HER2- they can test to see if chemo is really needed. I'm sure Northwestern will order this but I would check because I think it takes a bit to get the results back.

Rene Sounds like your news although not perfect was still good news. Happy dancing for you as well.

spunkyboobster

Peki-good news, now you can move forward.



Rene-good to "see" you and hear your news, too. So is gluteal inflamation similar to a pain in the arse? :O



Hope everyone was able to enjoy some of this beautiful day!

Timbuktu

Oh cami!  You gave me such a good laugh!  Yes, we're HAPPY to hear that anything is wrong with us...except the big one!  So true!

Timbuktu

Horray for clean nodes!  Can you tell me who your dr is?  I want the same one!

IllinoisLady

Yay for everyone......yay for the positives rather than the negatives.

Peace and love,

Jackie

spunkyboobster

Had my 6 month follow up with my onc today-in and out in 30 minutes! Yay!

joan888

Yeah for all the good news.

zap

My heart is hopping with all the good news!

kjiberty

Zap.  Hugs to both you and your husband!

Peki:  Yay for the wonderful news!

Spunky and Adey:  PM me and let me know when you're going to be in Peoria. 

camillegal

Spunk it's great when u don't have to spend u day there.

IllinoisLady

When we choose not to focus on what is missing from our lives but are grateful for the abundance that's present--love, health, family, friends, work, the joys of nature, and personal pursuits that bring us pleasure--the wasteland of illusion falls away and we experience heaven on earth.

Sarah Ban Breathnach

Timbuktu

Nice quote!

peki007

My doctor (BS) is Dr. Nora Hansen at Northwestern.  An incredible woman.  Very understated, but confident and evidently very well respected and known in her field. As someone else on this board said to me very eloquently, "She knows her way around a sentinel node".  A wonderful recommendation.  Thanks for all of the positive support ladies!

joan888

She is my BS also.  Really love her.  Peki...you described her so well.