Calling all TNs

Nice new avatar, Luv.  And thanks for sharing the photo of your beautiful mother.

Well, ya got one under your belt.  Make sure youhave your scarves, hats and a wig in the waiting.  Sorry to say,  but losing your hair is going to happen.  I had my long hair cut into a short bob a week before chemo started.  Then had my DH shave my head a day or two after it started falling out.  Made me feel like I had control of something during such a crazy time.

Char, I asked my MO for Metformin.  Was told NO.  I then asked my PCP for it and he wanted a Hgb A1c and it was 6.5 and he gave it to me.   I asked him for a script for 850 mg twice a day because that is what the study dose is.  I started with 1/2 tablet in the morning. A month later added 1/2 tab at night.  eventually kept increasing until i was at a full tablet in am and full tablet at night.  Only problem I had was severe bloating and constipation.  Once I changed my calcium gluconate to calcium citrate I was just fine.  I have made a few small diet changes, too.  I am at the gym 5 to 6 times a week and my last A1c was 5.5.  Also had the bonus of losing 10 to 12 lbs since May. 

Lovely, I have never written notes to my onc, but I do carry a notebook to every appointment that I keep my questions at the ready.  But I do admit that DH goes with me to all my Onc appts and he helps me to remember what the answers are!  Damn chemo brain.

NavyMom - excellent results with the metformin and lifestyle changes!!!

Christina and Annie - thank you! 

Annie - airbrushing those photos...LOL!  Not really but I think that since I'm taking my own picture, I must be holding it just far enough away that you can't see my wrinkles

Triple negative cancers are definitely fast growers.  I was all clear in December 2010 via mammogram and ultrasound (follow-up to first lumpectomy in July).  By March 2011 I had a 4.6 cm lesion and at least 4 positive nodes.  Frighteningly fast.

Kathy - how are you feeling?

5owens - glad you got #1 done.  Be sure to keep drinking loads of fluids and take the Emend (hopefully they gave it to you).  It's a miracle drug but not if it stays in the package.

I have a CAT scan on Friday.  It should give a clue as to how the clinical trial drug is performing.  It will have been just 5 weeks, though, so I'm not sure how much to reasonably expect.

Mine wasn't caught by mammo either in January, and then in July, I was diagnosed, just 6 months later.  The January mammo was 100% clean, they didn't see anything.  How can cancer grow in 6 months?  My BS told me that it takes 5 years at least for a cancer to grow from point A to point B, when it finally shows up.  this is exactly what she said.  I am not sure what to believe.  This is a fuc.....en sneaky piece of shit, and should leave us alone, it is like an evil entity, wish I could swear to it, until it leaves us the shit alone.

Morning to everyone.

5owens - I went through 6 AC.  REST is everything. It does build up on you.  I didn't not have many SE's, thankfully.  I did struggle with woozy chemo head and low white blood counts.  The worst for me was the metallic taste - made all food taste weird.  The funniest - I do not eat chocolate or cake, do not have a sweet tooth. I actually craved chocolate cake and cream.  Ate so much of it - even the thought of it now makes me feel ill.  I also had a few glasses of red wine, when I couldn't relax.

So take care and pamper yourself. 

Dawn, your post was touching and all these beautiful words written are exactly how I feel.  I especially want to echo Lovelyface's last sentence .... with God all things are possible.  Lance Armstrong comes to mind.  Diagnosed in 1996 with testicular cancer that had spread to his brain and lungs.  He was given a very grim prognosis.  Look how he is thriving now, 16 years later.  

All of us women are here rallying you on, so keep your party dresses going and fluff up your cement pillows, because life is starting for you! 

Sisters united.

Hello everyone,

There seems to be such a lot of wisdom among this group, so I hope you might be able to shed some light on the following or at least give me some guidance on the questions that I should be asking my oncologist.

While going in for some regular PICC line care today, I was asking the nurse some questions which caused her to pull out my file, and in the process I learned that although I tested negative for estrogen receptors, I tested quite strongly positive for progesterone receptors.  The two tests were done at different times, and when the ER came back negative, I never actually asked about the PR result as I was told it was so highly unlikely to test positive.

I've spent some time today surfing the net to understand more about what this means, and it seems that less than 3% of BC is ER-/PR+.  There doesn't seem to be much written about it at all, and there doesn't seem to be any firm agreement on whether ER-/PR+ people benefit from hormonal therapy.  In fact, some articles seem to question whether this type actually exists and whether it's just an indicator of some error in the pathological testing.

I also found out that while my tumour was primarily IDC, there was also some ILC and ILC in situ present. I haven't even started to think about what this means, if anything at all.

I see the oncologist tomorrow, so of course I've started to write my list of questions for him, but if anyone knows anything about this, or can help me to make sure that I ask all the right questions, I'd be really grateful.

Annie - still waiting. I hope you adjust to your new normal soon!

English Rose - I hope you get the answers you need. It seems I remember reading of a drug that is available for PR+, that is not of use for PR-. Let us know what you find out.

Hi ladies,

I'd like to get my mom going on your private Facebook page I'm still working on getting her some modern day internet service, slowly but surely it will happen lol. She came over a couple of weeks ago and I got her set up on Facebook. She really enjoys talking to other women who she can relate to.

Dr. Called, I am now stage 4 it's in my liver and chest nodes. I so don't want to tell my husband.

English Rose:

Hello! 

Different tests will have different cut offs to be considered ER + or PR +.  I know firsthand, as my Oncologist ran every single test available to ascertain if I could benefit from Tamoxifen, as I'm TNBC.  And with those tests, he painstakingly (probably more to him than me) explained everything to me about each test.  While at times the information is extremely scientific and hard to understand, this is a general summary of what he has taught me:

The GenOptix Aqua Test (newest test for identifying receptor status) had a cutoff of 1% to be considered ER+. Some Doctors will also interpret the % to include in their assessment of the treatment, especially on a borderline result.    

My Oncologist, who is Triple Board Certifed and a PhD explained the various tests will test things at various molecular levels. For instance, you have the protein level, the DNA level and the MNRA level. This framework is analyzed to understand the sequence of information in the molecular biology of things. (I'm sure I got that last sentence wrong .... he goes very deep, draws me pictures of these levels, etc).

Some tests use qualitative analysis methodology to reach results, while other tests use a quantitative analysis to reach results.

Example:  The Oncotype DX test is Quantitative, vs GenOptix which is Qualitative.   The Oncotype DX test can be just as useful on a biopsy, because there can be more tissue present. 

Back to your records - My suggestion is for you to request a complete identical copy of your file for your records. That way you are not blindsided with any information later in time.  Even something in your file, that they feel is not of importance to bring to your attention, could actually be something you may want to know in the overall management of your treatment and care.

In your file, for each test result for your receptor status, there is usually an accompanying page for that test, which lists the score and % to be considered + or -.  My results also had correlating graphs and charts to further explain the score in relation to the percent cutoff.

I emphatically urge every one on this board to have copies of all your files (complete files) from each office that manages your care.  Also, request your file from the hospital.  Then once you have your files, at the end of each office visit, or after they call to tell you of lab results, request they send a copy in the mail to you.

Some Oncologists and other offices now have all labs, pathology and radiology tests available online for the patient to view at any time.  It is rapidly becoming the norm that patients want immediate access to their information.  It is your information and you have a right to it.

I hope this helps you a little bit!

Thank you Annie. I had my PCP order a PET/CT, because I have been very fatigued - that is always my big symptom, as I am hypomanic, and usually have too much energy.

I'll know more after talking to my Dr. Tomorrow. I'm just numb right now. House filled with middle schoolers, keeping me busy.

OBKX.. hugs and love coming your way.  No words... so sorry.   Agree with everything Annie has said. 

OBXK~ love, hugs and the strength to fight this and win!

OBXK - Crappity crap, I hate this freakin' disease. It all seems so random and unfair. Good you got the PET so you know what's up and can get a treatment plan in place. Hugs, hugs, hugs, my dear.