Calling all TNs

DorMac and CS - Thanks for giving me great reasons to laugh.

I have a question about %s. I was initially dx'd TN, but apparently my subsequent pathology after my bmx in Oct showed about 1% for ER. That didn't come up until I was about halfway through chemo and was going over something with my MO. She said 1% is still considered TN. I'm not a big soy eater, but I was cleared to go back on my birth control (IF my period comes back) by my MO and gynecological onc, who also said I don't need to worry about an ooph until I'm nearing 50, even though I'm brca2, because the avg age of ovarian cancer for brca2 is 53 or 54. I do plan on the ooph a little sooner than that (I figure this gives me time to regroup), but should I be concerned about estrogen, soy, etc? 

I peek in here from time to time. I just had my exchange on Thursday and am doing well, and 10 weeks pfc and doing pretty well, aside from some lingering neuropathy and occasional fatigue. Lots of little blessings to be thankful for. I'll look forward to checking in every once in a while.

Titan.... I have heard other people say that about chemo.  If you can get through chemo then the rest in comparison is way easier.   Very encouraging - thanks and I am happy to hear your JMHO.

Love this thread!  You ladies are one in a million!

 Hope everyone has a lovely evening with  minimal SE! 

LuvRVing - Michele, just checked out your updated site to read about your tour of the Louvre. Sounds very interesting. I think if I ever visit Paris, I'll put a fake cast on, rent a wheelchair and get the "deluxe" tour! By the way, besides making me hungry, you must have really enjoyed your crepes from Mumbles as that is the second time you posted pictures of them! Perhaps you should be looking into setting up an american franchise for them. But, really, thanks for the posts - it seems that you all had a really great time and we get to see Paris through your eyes while sitting at home dealing with our various SEs. Do you still have more to post? Hope everything else is going well for you, too.

Doreen 

thanks for the laughs tonight!!!! am enjoying this thread greatly because it makes me feel as if I'm not alone!!!

hope everyone is doing well.

Kelly

She was standing in the kitchen
Preparing to boil eggs for breakfast,
wearing only the 'T' shirt that she normally slept in.
As I walked in almost awake,
She turned and said softly,
'You've got to make love to me this very moment.'
My eyes lit up and I thought,
'I am either still dreaming or
this is going to be my lucky day.'
Not wanting to lose the moment,
I embraced her and then gave it my all;
right there on the kitchen table.
Afterwards she said,
'Thanks,'
and returned to the stove, her 'T' shirt
still around her neck.
A little puzzled, I asked,
'What was that all about?'
She explained. .
'The egg timer is broken'

CS - MO stands for medical oncologist, as opposed to the radiation oncologist, the gyno oncologist, etc.

Loving the laughs!

Annie - Woo Hoo! On making it to 1/2 way. I hope this one is an easy one.

Half way there Cocker... what a feeling that must be.  

Kellycbk - you will never feel alone here.

LNBCA - someone will sure to be here soon to offer some advice for you and your Mum.

Just watching our news... there is a beached hump back whale just south of Vancouver, place called White Rock.   Not looking very good for the poor thing... high tide is a few hours away.    Vet on site said whale in a very distressed state.

Enjoy your days ladies !

Beached baby whale is dead  seems caught in a fishing net whichi immobilized it.

LNBCA - It seems like your mom has a few factors which are causing the shortness of breath, asthma and the anemia.  I understand from your post that maybe she has finished AC and is going to continue with Taxol.  AC was really bad for my breathing.  I have a CPAP machine due to a sleep disorder which throws forced air through your nose when you sleep.  I swear if I did not use the CPAP after AC, I would have died.  I also could not breathe.  The day of chemo, I highly depended on my CPAP machine to sleep through the night and also just to be able to breathe.  I am wondering if your mom gets the neulasta shots after the treatment.  That is a must which brings up the blood white and red cells to normal.  Once the blood levels are normal, one should start feeling good again.  I would never take iron tablets on my own, it always should be supervised by a doctor.  I had bought some, but never dared to take it.  The medical staff need to pay attention to your mom, yell at them if you have to.

LNBCA - I had to have a blood transfusion after 4 A/C and before my Taxol started.  I was literally crawling up the stairs and felt SO faint all the time.  My breathing was terrible and I was pretty well labour breathing at the least little effort just to try and get air in my lungs.  The blood did WONDERS and I was able to finish the chemo.  I also had a terrible cough (chemo cough) from the A/C as it burnt my sinus' and my sinus' were swollen so everything drained down my throat.  The cough lasted until 3 weeks after my last A/C and then it just went away as my sinus' healed.  I would ask about a possible blood transfusion.  My red cells were at 82 and a normal LOW is 105.  I had the neulasta shots but I was told those were just to help the white cells recover so you don't get sick.  I never had an issue with my white cells.  Good luck to your Mom

SusieSue - that was a great story with a wonderful ending. Congrats.



Lovely - feel so bad for Robin Roberts, but she so lucky to have a sister who's a perfect match. I was told about the leukemia risk also but I didn't realize it was as high as 1:1000. Fiji sounds lovely.



Roxie - Welcome to the group. Very sorry about your Mom. Mags is right, ask away and don't be shy. No need to be embarrassed to ask anything, because someone here has had the same exact problem.



Borntosurvive- So nice to see you. Maybe because I'm older I've given up on the concept of "normal". I'm seeing people my age have strokes, heart attacks and just had a friend dx'd with Parkinson's. I guess my feeling is at my age, there is no normal for anyone, they're all dealing with trials and tribulations of some kind. For all you younger ladies, it just plain sucks!!!!!



Dormac - I SO HAVE some guys

to use that egg timer joke on!



Rachelvk - Nice to see you again, too. I eat soybeans but I'm not ER+. (I actually eat them because I like them). May I voice my opinion on something? (it's just my opinion, and totally respect that what you choose is what is right). If I was BRACA + , I wouldn't wait to get my ovaries out. Ovarian cancer is silent (no obvious symptoms early on) and deadly. I had a hysterectomy in my early 40's and wanted the doc to leave the one good ovary. She advised against it for two reasons. First, high chance of ovary going into surgical shock and being useless. Second, "why would you want to be walking around with a ticking time bomb in you"? At time I regretted the decision but now that I've been dx'd with TN (long story, don't know my BRACA status). I am so grateful to have had them removed.



Kelly - you are not alone. We'll always be here to twit and harass you!



OBXK - So jealous, have never had a chance to see Bonnie live. I used to play "Hear Me Lord" on my way to chemo.



Titan - that was hilarious, nice to know we "Rock on" no matter how old we get. When we get really old we can look forward to throwing our Depends onstage.



LUVRV - i'll be off to read your post, it's my vicarious vacation



Cocker - *hangs head and looks guilty*. Sometimes it's best to give people just the information they need, not all the information. Trust me if they lance it, it only hurts for a second, and feels immediately better because all the pressure is relieved. By the way, you ARE a much better patient than me. If some doc was in my "Girly bits" and started talking about lances, I don't think I could have resisted the urge to ask him, "and how big a lance would we be talking about

here"?



Tazzy - poor baby whale. Rads are a pain because you have to go everyday, but much easier than chemo. There is one thing I want to mention, that happened to me. My first visit the rad onc, explained that sometimes people's breast either swelled or shrunk with radiation ( I was not happy to get that info at that point, I think it should be presented to you before you make your surgical choices). I went from pre-surgical "you may have a small dimple or indentation" to a post rad breast that is two sizes smaller than her sister". It is what it is, but I just think they should tell you this in the beginning, not halfway through treatment.



LNBCA - LUVRV and Lovely gave you great advice. ( I am the opposite of Lovely though, I just started taking a small dose of iron when I was anemic. I'd still be anemic if I was waiting for my doctor to tell me).

It definitely sounds like your Mom has a combo of lung problems and anemia that compounds it. (less red blood cells = decreased ability of blood to transport oxygen). It sounds like they are watching it, because they did give her an antibiotic. I don't know which shot they gave her, there are two. Neulasta helps produce white blood cells, and Epogen helps boost red blood cells. I was pretty short of breath by the end of chemo, but it got better quickly. Make sure they are checking her blood values frequently. If she gets to low, they can and will give her a transfusion, but they don't do that till your blood levels reach a specific point. (and if she is so short of breath that she would consider stopping chemo, they may consider doing it. If you don't get what you need, you could also have a pulmonologist do breathing tests, which would show exactly how her lungs are currently coping. But again, anemia and shortness of breath are pretty much a normal with chemo.

LNBCA  I was very weak with chemo, like needed help to get to bathroom.  My WBC was always very low one week post infusion.  Oncologist always prescribed antibiotic.  My RBC was always near normal which was hard to believe. I received ACT all at once x 6 at 3 week intervals.  Usually I could get to family room about a week before next infusion.  I needed a wheelchair to get from car to each station at cancer center.  That was a year ago and today my only concern is recurrence. 

I was stunned with Robin Robert's diagnoses.  No one told me about this possibility.  I understand she is triple negative too.  She's such a dear person and I admire her greatly.  I love how all the ABC news people gathered around her for support.  

LNBCA - I am so thankful that your mom has you and her sister during this time, that is wonderful.  My friend talks very highly about prenatal vitamins.  She is 53'ish and buys them from Kaiser Hospital, over the counter.  She said it helps with many of her menopausal symptoms.  I hope it helps your mom.  That is my son's precious dachshund in my profile pic.  She is the love of my life, so cute, so precious.  She showers all her love and attention on me whenever I am asked to go petsit her and two other dogs.  I only had interaction with dogs when I was a child back home in Fiji, so had forgotten the characteristics of animals.  Lately, I feel that I have reunited with my old love for animals.

Born - thanks for clarifying that neulasta only helps with white blood cells and not red blood cells.  My treatment memories are fading away, since it has been almost 2 years since diagnosis.  In a way it is good that my memories are fading, however, I don't want to give out false info. So thank you for correcting that.

Kathyrnn - Very good note on Ovarian cancer - a silent killer. A family friend is going through second round of chemo for that. She said the docs took a very very long time to diagnose her with OC the first time, as the symptoms were so unrelated. She was checked for stomach problems, put on antibiotics, colonoscopy etc. Turned out it was ovarian cancer, stage III. She was treated once, but now it is back again, horrible stuff. 

Inmate - so good to hear from you. And I love your remarks regarding the hair......ha! ha! ha! I don't think anyone can understand the reality of it all, unless one goes through it.

OK Ladies, I have a huge scare right now.  One thing is not over yet, another nightmare is on the way.  I told you, it is non-stop.  I am going to have my second biopsy for thyroid this Friday, so at least now finally I have the authorization and appointment.

For the last few days, however, I have been feeling that my BC breast nipple has been burnng.  This morning I had ice in my bra, it was feeling so burned.  And under my arms on the same side, I feel a lot of little bumps and lumps and pain.  I am just so sick of this.  I had to call my BS and ask the office staff to have her call me, let me know what to do.  My 6 monthly MRI is due in August.  Since I have those abnormal epithelial cells on the right side (non-cancer), I am supposedly a "high-risk" patient, so they give me MRI's every 6 months (or is it every year?).  I dunno, but I am supposed to have one.  Now I am totally freaking out about this burning.  I am thinking, God, let it be the flax seeds.  I was eating flax seeds with yogurt, as the cottage cheese was giving me stomach ache.  They say flax seeds are very estrogenic.  Maybe that's what it is.  I am not sure what the BS will recommend.  I am so so so very sick of my life, I hate seeing doctors, but it seems like I cannot live my life, without having to see so many of them, one after another, week after week.