Bonfire of the Goddesses

jo1955

VR - You are so funny.  But, I do know what you mean.  It can be so confusing at times.

kira66715

VR--the adjuvant king is now focused on extended adjuvant therapy and after he clarified that endometrial cancer is "benign" and doesn't change his approach, he said I would not likely benefit from extended adjuvant therapy, but could make an appointment to discuss it....

The press releases from ASCO on ATLAS said that there will be deaths from endometrial cancer due to extended use of tamoxifen, but they're acceptable as many more breast cancer deaths will be prevented.

So hard to wrap my mind around a therapy that has expected deaths as a side effect.

The problem is that breast cancer is a heterogeneous disease, and they need to individualized the approach to us. And NCCN can be so cookbook.

When I was diagnosed with the complex atypical hyperplasia, my gyn onc told me her practice was to do lymphadenectomy if the frozen path suggested cancer, yet a quick literature search showed no benefit in stage 1 disease, and the NCCN on one page says to take the pelvic/abdominal nodes in all women, and then the next page says if stage 1 disease is "unstaged" you just observe--there's no treatment difference. So, we agreed to no node removal.

What I'm seeing in the oncology literature is a push to extended adjuvant, but trying to figure out who it benefits the most.

And they won't know that one for a long time.

voraciousreader

Kira... Just to add to the mix... At the June ASCO meeting... Results of the aTTom trial was announced. It mirrored the Atlas trial. It seems that 1 uterine death occurred following 10 years of Tamoxifen while 30 breast cancer deaths were avoided....

kira66715

VR: I think that's where I found the line about "acceptable deaths"

voraciousreader

Ahhh...Kira... You see with researchers it's all become a numbers game... They're not clinicians in the trenches with the patients... So we've been reduced to a number on paper and a death then becomes "acceptable." Into the fire goes researchers and their numbers!

kira66715

VR: watching them burn!

As my sister's back surgeon once said to her as he was reciting risk stastics: "But if it happens to you, it's 100%"

The adjuvant king is clearly brilliant, but rumor has it, hates seeing patients, and it shows. So, there's a renowned researcher, who treats all of his patients as though they were statistics. Pleasant, but casually cruel, was my experience with him.

And so affable that I found I didn't realize until I left how upset I was: my dh was saying "great visit" and I was reading their version of my path, which showed LVI--questioned on my biopsy and not found in my gross path locally --and they refused to re-read it as the pathologist "is a world expert", where my local hospital did the special D-50 staining and all re-read it and stood by their initial read of no LVI. So, dh is saying "great visit" and I'm saying "don't you understand, I'm going to die."

So, clinician/researchers without inherent empathy, onto the fire as well.

voraciousreader

Kira... I just read Paul Offit, MD's book, Do You Believe in Magic... Excellent book.... Anyway, he said something like this... If a doctor can't show some empathy for his patients... Then instead he should be a pathologist!

Joan811

Hi goddesses,
I have learned quite a lot from reading back through June...acceptable deaths (Tamox/uterine ca) is like acceptable plane crashes because flying is stastically safer than driving.
Jo, I know you took your trip...but I lost track of your surgery date.
I hope all is well.
Hi VR...hope you are having a good summer.
Linda, gritgirl, Mariasnow, Jo, Kira, VR, the flames are still burning from all the things you threw out there....some days (or some hours, as Linda said) reality just sux and we have to come here because who else wants to listen?

I have learned a lot from this thread and just wish we didn't have to be here.
I hate when BC sisters are hurting.

VR - I am feeling the Femara heat more now that it is summer and my body can't get rid of it as fast...not so bad the rest of the year.

Shellshine

Haven't posted in awhile, hello to everyone.

voraciousreader

Joan... A few days ago I switched to taking the Femara at night and I think it might be a drop better... I seem to vaguely recall that the MO told me that I should try day or evening and see which felt better. I am still warmer... but maybe not as much... but who could tell the difference in this heat and humidity!





Today I am throwing into the fire the Canadian Health Care System. Had to take a spin up to Montreal and take my elderly frail Canadian uncle to a doctor appointment at the hospital. Canadian system works very well until you are frail and elderly. My heart is aching for him and his primary caretakers... I'm helping mostly by proxy... So sad...

jo1955

Just got back from a wonderful time in Vegas.  Hubby and I went out to celebrate our 40th anniversary.  My brother and SIL met us there and we had a great time.  It was so hot but that didn't stop us from going to many of the casinos and seeing some of the sights.  My SIL had never seen Hoover Dam so we also went there.

Joan - My surgery is this Saturday - Jul 13th.  Should be in the hospital for 3 days.  I just want to get this done so I can go back on my Tamox - have 2 1/2 years to go. Since Tamox did this to me, I could care less at this point if I do stat back up but I told my MO I would.  I won't have anymore uterine issues to be concerned about.

Joan811

Jo, so glad you had such a great trip. Congrats again on 40 years!
Did you have a favorite casino?
I will be thinking of you this week end and sending positive thoughts and prayers for a quick recovery from surgery. 

VR, so sad about your elderly uncle.(A 'spin' to Montreal is quite a trip)
About Femara - I did the same - I take anti-anxiety pill in the morning so it peaks during the day and the Femara after dinner so it peaks while I'm sleeping.No problems with heat while sleeping.  One thing I noticed....if I waited until right before sleep to take the pill, it might not be metabolized until the morning.

Tomorrow is my 2nd annual mammo since dx (July 2011).  I want to throw on the fire the stress of mammo day.

voraciousreader

Hmmmm....Joan...I am taking it at bedtime...might I ask who told you it might not be metabolized til morning?



...Montreal is a straight shot for me and I've been doing it my whole life... Used to the trip.. Find it relaxing...and my kids too enjoy it... so it must be genetic! Sometimes when we hit the border we are disappointed because we know we're almost there! Takes us sometimes less than 7 hours if there's no wait at the border... I find sitting on the grand central or LIE way, way,way more stressful!





Jo...good luck with surgery! We'll tend the fire in your absence!

Joan811

VR, nobody told me that. I have noticed with other drugs if I take them right as I go to bed (ready to lie down) that sometimes I feel the effects of the pill in the morning.  Also I sometimes have the sensation that the pill "did not go down"  right away which could be unique to me since I have issues with that.  I  decided to take it earlier in the evening with lots of water.  It is my understanding that digestion slows down while sleeping. 
Either way, the substance gets where it should be. What are your thoughts? 

Linda-n3

Good morning, Goddesses!



Throwing in the 3 hrs a day doing mld for le - twice a day i do an hour plus extra for hand and I am sick of tv so typing 1-handed, doing lots of things left-handed because of bandaging the rest of the time. Throwing on the supposed BEST le therapist who discharged me from treatment after 11 sessions witha little improvement at 2 weeks but never established that i had plateaued (supposedly that was to be HIS goal) he never asked what MY goals were, met none of my functional goals, never got suitable garments that work, and no plan, into the fire!!!!!!!!!



Joan, your body metabolizes meds qw they are absorbed, but absorbption might be slower at night depending on what you eat.

voraciousreader

Joan... I think metabolization of a med has more to do with it's half life. Likewise, some foods may interfere with metabolization and/ or absorption of a med. With respect to side effects such as drowsiness, then time of day of taking the med might mitigate some of those issues.

FireKracker

Hey VR.nice to see you and Joan chatting.

I have something to throw in the fire but I cannot say what it is.

After aug.1 ill let u know

But in the meantime please help me start up this fire again.

I'm like a raging bull.I have large stick matches.

And an apple pie.

But I need help around the fire.

Huggs everyone.K

Linda-n3

Hugs, GrannyD! We will get this fire roaring for you!!!

FireKracker

Thank u Linda...

I just found some card chocolate kisses

Xo

Grannydukes

FireKracker

I meant dark choc.

I hate the I pad.

jo1955

Granny - How big would you like the fire to be this time?  We will get it going for you.

FireKracker

The biggest fire you can think of and then double that.and double that again.

Just back up because I started it small.you know how fast this thing will spread.

Just keep it goin till aug1 ..ok?

jo1955

granny - count me in.

Shellshine

Thinking of Jo today and her surgery. Healing thoughts for Jo.

Linda-n3

Jo, hope all goes more than well- we don't want to have to put more on the fire from this surgery! But we will if we need to.



I may have accidentally tossed some of my sense of humor and cautious optimism and maybe even my ability to find joy and beauty each day on the fire. Have been looking for them for a couple months since LE started. If you find them in the ashes, I would like them back, even if they are a bit charred. Thanks.

FireKracker

Prayers for JOJO...hope everything goes just perfect and you will be back on the boards ASAP...miss you..

Love,hugs and kisses

Grannydukes

jo1955

OMG!  So much pain yesterday.  Had pain meds on a continuous basis through the IV until this morning.  Slept a lot. I want throw in everything - this all really sucks!  Thank you Tamoxifen.  Burn Baby Burn.

voraciousreader

Jo! All those female parts and pain are creating a huge flame! Keep tellin' yourself that you are the SUPREME goddess and hopefully some of the bonfire's magic will quickly work on you!



Tender hugs to you and prayers for a super duper quick recovery!

FireKracker

Spoke to Jo this morning.She is doing much better.

Keep the fire burning.

jo1955

VR - I am the SUPREME goddess."g   It is early afternoon and I just took my first walk round the nurses station.  Not far but I did get tired so am sitting on my butt.  Now I just have to convince my old stubborn self that it is going to take some time to recover from this one so keep the home fires burning.  I am so damn cold in this room - the "good" flames will be good about now.