Starting Chemo in September?? where are you ladies

Thanks Paxton! It was Friday. 44 now, yikes!

Yep, 4 1/2 weeks to go. Are you red or itchy? I'm mostly itchy, but the aquaphor 2-3 times a day is really helping. My friend calls it the "bbq" which makes me smile for some reason. Enjoy your heatwave...we are drowning in rain here in Southern CA.

M 

Hi to all!

I just returned from my last Taxol tx!  YIPPEE!  I even got a nice certificate declaring that I have a "Doctoral Degree in Chemotherapy", and all the chemo nurses signed it and wrote little notes!  I got lots of hugs and really had to fight the tears!  I told them I was "glad" I could still come for my Herceptin and not just leave them abruptly.  I see my onc/surgeon tomorrow to find out about my rads and solo herceptin schedule.  They also did labs and all my bloodwork was perfect.  (Karyll, they did say that chemo can make your liver profile go out of whack, so don't fret about yours)

I hope everyone is feeling well today.  I feel very tired, so I need a nap so I can get going again.

A rads question:  did you start using the Aquaphor before you started the rad treatments?

Gee, I wish I was holding and smelling my darling grandson-- I bet I'd come alive then!

Take care, everyone!

From Granny MJ

Pax the bf is a keeper !!!re: "in  for the long haul" comment.

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Granny MJ --CONGRATS ON CHEMO GRADUATION !!

and  I am soo glad that the echo and EF is normal yey !! go shoot that stupid tech( I actually would have written something to the office manager regarding her comments)

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I was on Paxil for 2 months after my dx(later learned that Paxil causes bc ????) and went off of it cause it made me feel 'too mellow' and mellow ain't me !!! But it was ok for the times when I was just bouncing off the walls panicking.

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Happy B-day MARIETTA !!!!

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Trigeek is on another tail spin gals..

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Went to another surgeon today (got his name from one of the bc gals on this forum ginger)
Here is his take:

What he said was basically the same line with the radiation oncologists. He does not see removing of the Level 1 & 2 nodes as a treatment, but more of a staging tool.
He also said that at a conference that he attended there was a heated discussion on this specific subject and no consencus was reached.

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His points were:
1 - My lymph node involvement seems to be minor, 10-15 years ago my case might have tested as Node negative, the IHC(Immunohistologic staining) is too accurate and captures even minute amounts now. ( 6 nodes were removed from me 2 tested + one <.2mm the other >2mm)
2 - The c cells are trapped into the lymph nodes ( who were doing their jobs of capturing bad stuff from going into the system) and they do not go anywhere from where they are captured. (did not know this)
3 - All Lymph nodes are not removed anyways only Levels 1&2 are removed, what happens to the rest ? ( levels 3&4 )
4 - The area will be monitored closely for any enlargement of the lymphs and then the AND will be performed if such a thing occurs.
5 - The chemo and rads should take care of any micromets that are in that area.
6 - He has only done 1 AND in the last 5 years and that was done at  the request of the patient.

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I was not confused when I left the doctors office because I really do understand what is going on now. This issue of AND being part of the treatment or not is at a turning point in the medical community. And those who do not want to stick their necks out are erring on the side of convention/caution. If one looks at the evolution of the mastectomy which was a totally debilitating surgery when it first was done- removing chest muscles and everything .. to how it is done today, just removing the breast tissue by ensuring of clear margins.

So I do have a surgery date of February 14th and will hold on to it for now but I am moving away from it slowly.

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When I got home I decided to give a call to Moffitt c center who still has not returned my slides to ormc. The breast center coordinator stated that they were looking at the unstained slides and were doing the her2/neu .. WT >???????? They had the slides for 6 weeks now.
I asked whether they were doing FISH she said yes.
Hmm.. this is a bit worrisome my initial pathology said HER-, and if they are suspecting HER+ this will change the treatment going forward. But then why the the surgeon at the Moffitt center say that they agreed with the pathology ? Could it be that they had not reviewed it actually at that time ? My original pathology says HER2 = .9
This really sucks !!! Another thing to worry about.

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After that my breast surgeon called ( I had called her) she said that if it was her, she would not get the AND.. since I was getting rads.
She also added that If there is still c sh..t in the lymph nodes after chemo and rads I should really be worrying about the systematic mets since that means that chemo and rads did not work,  local recurrence is not worrisome no one got into trouble cause of lymph mets.

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My million $ question was that  whether the c could possibly spread from the lymphs where they were living (if there is still stuff in the remaining ones)

I really do not know gals..  I seriously am not comfortable giving away my lymph nodes whereas all the new findings are showing that for this scenario I should not need to do so.

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I am looking for some signs to help me make a decision, I even did some blind drawing with crayons(put a pile of crayons in front of me and made pictures of surgery versus radiation choosing colors and drawing blindfolded hoping that I would choose some gloomy color in one scenario ) but this did not show me anything either.

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So far those who say go for node dissection:

1 - My oncologist -- has a HUGE weight

1 - Major cancer center surgeon(who is kind of a rookie)

Those who say no go for node dissection, but just do rads:

2 - radiation oncologists

3 - surgeons

1 - major cancer center tumor board.(that includes my surgeon)

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So no rads are winning 6 to 2. 

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If I do not do dissection my oncologist said that he was ok with it, however then that means that I can not trust him 100% in my treatment going forward..and I need to find a new oncologist ( he already is my 2nd one !)

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I know you all are going to say 'good grief girl, just let it go'

BUT I CANNOT !!!

I am being tested I know, but for what I do not have a clue !

CONGRATS on finishing Taxol, MJ!!!  Hope you can enjoy some time off before rads.  They made me wait 4 weeks which seems longer than others on here.  But it got a little screwed up because I didn't end up having the last taxol tx which I didn't know until the day it was suppose to be so it felt like 2 weeks off.

BUT DON'T IT FEEL GREAT!!  That's so cool they gave you a certificate. 

I really didn't feel that kind of attention or warmth here.  There was a receptionist I talked to a lot while I was in the waiting room (showed her my fish pictures, etc).  I liked the chemo nurse and did talk to her, but mostly you went to your stall and sat. 

And they said I'd get so close to my rads team, too.  But I slide a barcode card in when I hit the waiting room, they call me back, do my rads and say, "see you tomorrow."  I guess when I'm done, at least I won't go through support withdrawl. 

Yes, my man is a keeper.  He's really shown his integrity.  His family and friends were somewhat surprised he stayed just because he was such a loner outdoorsman before we met.  But they've all said they're really proud of him and also say that I've been the best thing to happen to him. 

Tri: you've got a lot on your plate.  I remember reading some information on that, but it wasn't my situation so I didn't think too much about it.  What I read said node dissection wouldn't be necessary after tx (for all the reasons you went into in your post).  It could be done to determine staging. 

But your onc seems to feel strongly you need it and he went to medical school and I didn't.  But I do find it weird that he said he wouldn't treat you if you chose not to have the dissection because he couldn't be 100% trusted then.  I don't believe there is anything even close to 100% of anything with bc. 

Anyway, that's my 2 cents.  Sounds very complicated when it shouldn't be so I wish you luck with it all. 

Another oh,

I found out today, my insurance is covering 100% of the $3300 genetic test.  YAYYYYYYY

 I'm so ticked off.  I'm on the farm with 4 vehicles that won't start and a pile of extension cords that don't work.  Which means I am missing my tx today. 

I've been plugging my car in but upon checking the cord, found it doesn't even work.  Great!!! 

And I bought a new battery 2 weeks ago because the oil change garage said my battery tested low for holding charge.  But since my extension cord wasn't working (and I didn't know it), it means my old battery was starting my car just fine when it was just as cold as it is now.

But what the hell do you do?  Add another day of rads to the end I guess.  Not such a big deal in the bigger scheme, right!!

The absurdity of my situation fails to amuse me.  Its like flippin -30.  I pieced together 2 working 6ft cords that barely reached the outlet only to find when bf got home and looked into things, that the plug to my car's heater block isnt working either.  The only good part of this is that I'm not stranded somewhere freezing to death.

Anywayyyy,

My lumpectomy is way up on the top right breast.  I have no idea where the rads goes except to my breast and armpit.  I'd be prepared with the bra thing, mj.  I can't wear even a sports bra now so I wear tank tops with loose built in ones, but I was told once I really get sore that won't even feel good.  Guess we'll see.  But I know what you mean about going braless.  I've been wearing long sleeve thermals with a loose t-shirt over when I go braless.  I really hate not being able to wear deodorant.  But its not for so long...guess I can deal

I'm going to climb under the electric blanket and await Boston Legal.  I have a major headache (can't imagine why).

Hi Paxton and thanks for the bra advice.  The no-deodorant thing stinks too, no pun intended.  Do they tell you no deo at all, even on the "good" side? 

I meant to tell you congratulations on your insurance paying for all your testing costs.  When do you have the test?  You're certainly in my thoughts and prayers for it to turn out negative! 

I hope you get your car thing fixed soon.  And Yes, thank God you weren't out somewhere stranded.  What kind of vehicles do you own?  We look like the redneck neighborhood car lot. We have five vehicles in our driveway and yard (plus two campers and a drift boat) and two of them are totally reliable and the other three are iffy.  They're all tagged and insured so the DMV and Nationwide loves us. They all have at least 100,000 miles on them except one- a 1976 Datsun B210 w/42,000 orig. miles, but she has carburetor problems right now.  And she's the real gas saver and the two we drive most are the gas guzzlers.  Our typical luck.  My most favorite car is my 1992 Subaru 4x4 wagon that I bought brand new and she just turned over 230,000 miles & needs some axle work but I still drive her to work and back occasionally.  That car has been with me thru thick and thin, thru a major blizzard in '93, almost got washed away in the floods of '04. I'll be devastated when she goes down for good.

Well that's my rambling for 3 a.m.- back to bed if I can sleep for the ferocious winds we're having.  This must be the year for weird weather everywhere.

Take care!

MJ

Hi all,

Mj my radiologist lets me use regular deo on the non-rads side and Toms natural unscented on the rads side. Some of the other gals on the rads thread are allowed to use Crystal deo...It is amazing how many differences there are in treatment protocol and rules....I have to say the Toms is not that great...still a little stinky on that side

Tri - let us know how the nioxin works out. I am using Nutri-ox, which is the Sally knock-off brand...My hair is growing in, but I have no idea if that stuff is helping at all. How was your support group? I hope it helped.

I asked about anti-depressants too...

Have a great night all!

Marietta 

Mary Jo, my doctor did not prescribe me an anti-depressant, instead he prescribed an anti-seizure med that was supposed to help me sleep. I read the side effects and it said weight gain, water retention...blah blah blah...I called the pharmacy and asked if I could return the meds...after the pharmacist chewed me out a little he said I could return the meds. I have a call into the doctor now. I mean sheesh! I wanted anti-depressants, and part of the reason I feel low is because of the weight I put on from chemo...it's a little frustrating.

My son finally got his buzz cut...although she didn't buzz it down all the way (thank God)...it's super short though...he likes it a lot, we took a photo together...I'll have to post here.

Paxton - I was standing in line at my local coffee house this morning and a lot of students were there. I was behind a girl carrying a large backpack and handwritten on it in magic marker it said "paxton is the best".... So there is your daily affirmation, all the way from "the goleta coffee co" in Santa Barbara CA. I hope your vehicle started today.

Have a great day ladies!

Marietta 

Marietta - geesh you know I am getting more and more fed up with docs I was at the PS office yesterday doing the paperwork for the expander exchange, and I say to the scheduler ' hmm I just finished chemo 3 weeks ago do I need antyhing special checked ' and they go ohh really and they add more stuff. What if I had not asked ? Get depressed for gaining weight and get a med that will cause you to gain weight.. now that IS not rocket science !

Can you please look around for other backpacks that might say Eileen is the best ? lol...

The support group was interesting there were 2 counselors(one cold as ice I would not hold the door to her !! ) and they explained the benefits of journaling, there were only 2 other gals there and their expectation was more of a group therapy rather than a workshop setup. I tend to agree, next month the topic is Music ( in destressing, relaxing) so will keep on going. But I have another neighborhood support group which is more interactive fun.

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Mary Jo taxol did my sleep BIG TIME! the effect did not wear off until  after 2weeks, so hang in there. None of the prescribed sleep aids worked, but 3mg Melatonin helped a lot ! That sounds like a wonderful car 240k !! pheww.. I love my passat wagon thought it was going to go at least 150k.. but I think it started leaking oil at 96!@#$!! will never buy a turbo engine again, great gas mileage but only if the engine runs right ? I do not like car shopping.
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Did you start logging your food in fitday.com ? I started mine and you can see it at:

http://www.fitday.com/WebFit/PublicJournals.html?Owner=triagain2002

I used to be able to lose weight so quickly ( like 14 pounds in 2 weeks without crash dieting) but now it is stuck !!

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Paxton, my gf came from MN from ice-fishing and she was kissing the warm FL ground lol, saying that 'cold' has a new definition for her now.

Status on my surgery : Cancelled the Axillary Node dissection just going with the Breast Implant exchange than a daily tanning appointment with my rads guy. My oncologist will not be happy I know but I believe this was the right way for me to go. I am excited about my decision I do not know why. My lymph nodes are having a little 'right to live' party and I am trying to talk to them about behaving from now on and killing any stray c cells that they might happen to stumble onto and let anything having the name start with c zapped at the rad table.

Signed up for a 5k on February 10 with a bunch of friends that benefits mammograms for gals who can not afford them.

Oh, we made a tent like deal with a garage heater to see if my car would start.  I think the fuel line was froze but also it looks as though the fuel pump is broke.  Bf is over working on getting his new transmission in the truck so hopefully he gets that done today so we have a vehicle.  Our friend's wife gave me a ride to tx again today but she's going out of town in the morning. 

The weather here has been like being in antarctica.  It was -50 wind chill.  I think we made it above zero today and slowly it will get toward the 20's by next week.  I can't wait!!!

A few people lose some weight during tx but the majority gain about 20 lbs and that's people who were skinny or bigger at dx so I can't imagine that 80% increase in risk of death could be true.  But its a wakeup call to eating better and exercising because it is important. 

But if you freak out about it, its just going to make you want to eat more so calm down and stop reading that stuff, mj. 

I'm starting to read some books about life after treatment ends.  Basically be prepared for another wave to hit you for awhile.  Its normal to start freaking out of recurrance and death and all that stuff.  Even when I'm not thinking about that stuff, I sometimes just feel blah and down or like crying for no reason I can pin down. 

Its another part we get through together I guess. 

Bf got his truck going so we have one vehicle.  He's gonna work on my car over the weekend.  Its warmer here now but its so windy that it doesn't feel warmer.  I can't wait for spring.  I'm bringing the dog to tx with me so he doesn't have to sit outside. 

MJ you just had to post that article just as I sent the hubby out for a brownie mix ?

I have been major stressed again gals, just as I thought that I would get a breather after making the decision on not to get node dissection. Moffitt cancer center ( to which I had gone for an opinion ) sent a fax.

In my original pathlogy report my her2 was -, with IHC testing .9 so I thought it was cool a fish was never requested since it was not borderline

For a reason unknown to me the moffit center did a FISH test and faxed the result to me "

ER2/neu by FISH: EQUIVOCAL

Ratio of HER2/neu signals to chromosome 17: 1.7
The average of Her-2/neu copies per cell: 1.1
The cutoff point for reassessing Her-2/neu gene amplification is a her-2/cen17 ratio of 2.0

The specimen is considered EQUIVOCAL for the Her-2/neu gene.

This result falls within the range of 'equivocal" ( 1.8-2.2) as defined by the 2007 ASCO/CAP guidelines. Comparion with results from another methodology such as immunohistochemistry may be of benefit.

I do not know what the @#$%! equivocal means in this context  and my IHC (immunohistochemistry) was .9 !!!!!

'google'ing:

The original FISH test results were defined as either positive or negative, but an intermediate range (from hereon referred to as equivocal range) has since been described and the clinical significance of this observation remains unclear.34-3
This strategy classifies patients as having HER2-positive disease based on positive results with either test. It is recognized that current data are insufficient to define whether these patients represent true- or false-positives

It is also clear from the panel discussion and literature review that patients with equivocal HER2 test results constitute a poorly studied subgroup with uncertain association of test scores to benefit from HER2-directed therapy.60 The panel suggested that further studies of this patient group would be promoted by defining these test results as equivocal or borderline. The panel elected to use the term equivocal to avoid confusion with borderline positive and borderline negative terminology which is sometimes used in the interpretation of FISH assays. Equivocal results of a single test require additional action which should be specified in the initial report. Equivocal IHC samples must be confirmed by FISH analysis of the sample. Equivocal FISH samples are confirmed by counting additional cells or repeating the FISH test. If FISH remains equivocal after additional cells counted or assay repeated, confirmatory IHC is recommended so that HER2 protein expression is known for the sample with true equivocal gene amplification status. "

" An important gap in the literature identified by the panel concerns those patients with test results in the intermediate or equivocal range. The decision to treat with specific therapies like trastuzumab is by necessity dichotomous (yes or no). However, HER2 test results are derived from a continuous variable, which can be expected to lead to some results falling into a gray area. Adding to this confusion is the fact that there is significant variation in the intermediate ranges for both the IHC and FISH assays. "

"The results of these surveys have shown that there is variation in laboratory performance, particularly for immunohistochemical assays with equivocal positive results or FISH testing with borderline results. The variation in immunohistochemical testing is greater than the variation in FISH testing. These results need to be interpreted with caution; however, as far fewer labs perform FISH than perform IHC, and FISH testing tends to be done in higher volume laboratories. The voluntary enrollment in this educational program leads to only a minority of laboratories doing this testing. Although the exact number of laboratories involved in HER2 testing is unknown, it is thought that about 2,000 laboratories perform HER2 IHC and about 500 laboratories perform HER2 FISH testing in the United States. "

If someone else says that I am in the gray area in anything I will surely rip their heads off !! Now how am I supposed to wait until I see my oncologist to see what this means for my treatment ????

Arghh !~!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Replaying the events.. the Breast Care Coordinator had told me that she was told that the lab said I was HER -, however when the report came I saw the equivocal and panicked.. now why would she say the lab said it was HER- ?

from the report "Comparion with results from another methodology such as immunohistochemistry(IHC) may be of benefit" ... as far as I know IHC can only be done on the fresh sample (a certain time after surgery) --- so the lab could not do an IHC on the parrafin sample and had to do FISH which came up equivocal, so as suggested they had to take the result of the IHC. The only thing I am puzzled is that FISH is supposed to be more accurate than IHC. I think I will ask for the following from my oncologist :

"Equivocal FISH samples are confirmed by counting additional cells or repeating the FISH test. If FISH remains equivocal after additional cells counted or assay repeated, confirmatory IHC is recommended so that HER2 protein expression is known for the sample with true equivocal gene amplification status "

Trigeek - blabbering