Crazy Sexy Cancer in Seattle

tkone

Jean,

Congrats on the BRCA1 and 2.  That is great news!!  Have a great weekend ladies.

Anonymous

Good morning - we have had so much wind here - very strange. 

Jean - congrats on the brac1/2 - results.  That should really give your sisters peace of mind.

Tracy - have fun in Oregon!!!!

Saw my onc. yesterday - she is very happy with my end of chemo results (white blood cell graph) and said my graph is exactly what they want to see for the 6 months I did CMF.  She also had me take a blood test to see if I will metabolize tamox. which I will start after radiation.

Hope everyone is doing well!

Susan

cheers247

Hello ladies... I went to the Neurologist at Minor & James, he ordered an EEG, EMG and MRA.  I had the EEG yesterday, and will have the MRA tomorrow (fri.)  I had to cancel the EMG for now because my hct, wbc's and platelets are too low for the needles involved.  I'll get results of all the tests in a few weeks. 

Susan - The heart disease thing is something I've been researching.... I went into early meno at 29, I'm 34 now.  Since then my chloesterol has been very high.  I eat right and exercise, but that does not help, so meds are the only way at this point.  It's something to keep an eye on, especially if there is a family hist. 

My next chemo is tuesday, (A/C) I hope everyone is doing well!!!

Much love, Jessica

Anonymous

Jessica - good luck on your additional test AND chemo next week!  I read the heart disease increase with rapid early onset of menopause in More magazine.  My oncologist kind of discounted it BUT I agree with you about the family history.  My chloeresterol is low at this point, but I will keep it in check.

Susan

golfer779

Susan .... Done deal with your oral cytoxan right ?????   CHEERS !!!!!!

dswope

Hello all,

Aprilgirl1 recommended I visit this thread.  I live in Renton and have recently been diagnosed, had a total mast., and am now trying to decide if I want to do the CMF or just the aromatase inhibitor.  Looking for all the info I can get.  I'm leaning towards skipping the chemo at this point  I did the oncotype test with a score of 29.

I must say, it's been fun reading thru this thread....you seem like a great bunch!

Deb

jeanbean

Deb--Welcome! This is indeed a great group and I'm glad you found us (thanks to Susan for directing folks this way). Sorry you have joined the club but having so many great women to support you makes a huge difference. The chemo question is hard--have you checked out the Oncotype thread? I had right mastectomy and my stats are similar to yours but with oncotype of 13 so decided against chemo. But it is a very individual decision--a friend of a friend of mine had lumpectomy and score of 13 but decided to do CMF anyway (she'll have radiation also). Good luck on your decision.

Susan--Congratulations on finishing another phase of treatment! 

Libby--I think you had tissue expanders put in recently--how did it go? How are you feeling?

Jean

tkone

Hi Ladies!

Hope everyone had a great weekend.  We are back from camping and I am SOO glad to be home.  We had a great time, but there is just something about being in your own bed, with your own stuff.

Susan-Hip, Hip, Hooray!  Good for you for finishing. 

Peg-Hang in there, chemo sucks-no doubt about it, but you can do it.

Deb-Glad you found us.  You are near me, I am in Maple Valley.  Where are your docs?  Good luck with the chemo/no chemo decision.  I so badly wanted someone to tell me that I didn't have to do chemo, but that wasn't the case.  I had my oncotype test and then once I got the results, panicked and never opened the envelope.  I have no idea of what my number is, but with the rest of my diagnosis am glad that I did everything that I possibly could to slay the dragon.  It is a very individual decision and one that you have to be 100% comfortable with.  Let us know how it goes.

Libby-hope you are doing well with the expanders.  Maybe you are feeling like a sausage like me??

HeidiSue-We missed you at the get-together.  I hope you can make it next time.  It is great to put names with faces. 

Robin-haven't heard from you for awhile.  Hope you are doing well and relaxing now that school is out.

Tricia-I'm glad you came to the get-together as well.  I definitely had reservations the first time we did it as it could definitely turn into a bunch of whining but I am happy to say it has been fun and entertaining and informative both times.  Next time seat swapping will be on the agenda.

Gina-If you are anything like I was, you are currently spending time looking in the mirror having a discussion with your hair; something along the lines of "Grow, dammit!"

Carol-74 days until the walk-Yipes!

Have a good week, all.

libby

Hi all - Yep expander surgery went well.  In fact the PS was able to put the expanders on top of the muscles so the pain was pretty minimal - course I was drugged for a couple of days just to make sure.  Now I have little half sized breasteses with strange shapes all their own, another new clothing challenge - but I'm grateful for how it all went. Still some strange aches and pains in my chest, not tightness exactly - I kind of backed off on my PT stretches, maybe I need to get back to it now.  Headed back to work today, just taking it slow.  Check up Thursday and then the plan for expansion will be explained. I'm taking pix along the way to share for those of you contemplating....

Gina, haven't seen anything from you lately.  You OK?  Should be about wrapping up chemo and looking forward to summer with the kiddos!

ginagina

Hey - yep, I am great! Last treatment was Friday (yippee!!). Just finishing off my cytoxan prescription now...I think that's when I will really celebrate. I hate the ick feeling...can't wait to enjoy a nice glass of wine (or something similar). The chemo nurse said to expect 4 months to feel normal again (or whatever length of time you were enduring chemo cr*p). Seriously? Oh well...glad it is summer. Glad the weather is nice. Kids are with babysitter tomorrow as hubby is going in for an upper endoscopy tomorrow at Swedish. Great...it is another SE of this disease!! They think he has either an ulcer or GERD. Poor guy! This bc stuph sure does take its toll!! Anyway, fingers crossed that they can figure out what is wrong...he is in a lot of pain.

Libby - timtam? is that who I should PM? My head in the sand on my next steps... I will probably call PS office next week to schedule a meet so we can map out my plan. yeah baby!

libby

Oh Gina - hope your husband's test comes out with the best possible outcome! 

Madge24

Deb - Welcome!  This is a great group.  I'm sorry I can't help you with the CMF question; my onc just told me I should take T/C so that's what we did.  She had been on the fence about chemo for me but once they did surgery found more than they'd bargained for so that's why she went in that direction.  I'm halfway done with chemo at this point.

Gina -- Let us know when you start going without the wig!  I'm sorry you are having to spend more time at Swedish w/ your husband.  Poor guy.  Mine gained 25 pounds with my first pregnancy, and for this time, he has developed a back problem.  Lovely!!    Congrats on your last treatment!!!! 

I know it'll be awhile for me but I can't wait for my hair to grow back although what little I have all looks white!  Egads, that's better than nothing, eh?

Have a nice evening all.

Anonymous

Gina - CONGRATULATIONS!!!!   I know it is a great feeling to be done with the infusions.  I am done with the cytoxan pills now too - yea for me!  Sorry to hear about your husband - hope it turns out to be an easy fix.

Deb - welcome!

Libby - sounds like you sailed through expander surgery.  That is great!  Please keep taking it slow, but it is good to hear that you did fine.

Met with my plastic surgeon today to go over the reduction/re-excision plan.  Tracy - I have a couple of questions but will PM you not to bore the whole group (or have TMI).

Hope everyone is doing well and enjoying the beautiful weather!

Susan

Tina-in-Seattle

Hi all,

I've been absent for awhile and boy have things gone on!  Welcome to all the new folks glad you're all here. Sorry I missed the get together it sounds like a fun time was had by all.

I started rads last week today was number 7 so far all pretty good just feeling a little toasty skin seems to be doing ok but there's still 25 to go.  The thing that bothers me is having to stretch my arms up behind my head it feels pretty tight and I have these horrible visions of my expanders popping out.  Yuck!  Anyone else going through or has gone through rads with expanders?

 But my hair is coming back and so far it looks pretty much the same as it did before I lost it all.  Salt and pepper except the pepper looks darker.  I've ditched the wigs and the scarfs and just go around with a baseball cap or nothing but man out in this sun even for a few minutes it hurts!

Congrats to all who have finished up treatments way to go!  Libby if you wear a sports bra the expanders won't look funny under clothes, it worked for me.  They look a little less weird when you get infused but they still look weird. 

Gina I hope your husband's condition is not serious and he'll have relief soon.

Well that's about it for me.  Trying to put some order in my house in addition to my daily trips for treatment.  Shoot the waiting takes longer than the treatment!

Wishing everyone well.

T

ginagina

Hey there - so I have finally left the baseball hat (my constant companion for 4 months!) behind!! I only wear/wore the pink wig on "special occassions" ;-) Well I went to my last tx on Friday "sans hat and sans pink wig". 

Pretty scary, but done. It is nice to finally see where my forehead ends....it's been a while!

Thanks for all the hubby well wishes. Yesterday went well, but they couldn't find any definitive culprit. So they are going to to an ultrasound to check for galstones and another endoscopy under anethesia to get a better look at tummy, upper I. A smoking gun would have been great...something to treat, you know?

Weather outlook is looking nice! Will we actually have a nice, sunny 4th? Might be the first in a long time!! Enjoy

tkone

Go Gina, Go Gina!  Looking good!

dswope

Hello again,

So, I've made the decision to go ahead with the CMF.   First treatment July 8.  Twice a month for 6 months. I fought it as long as I felt I could!  It seems though that the worst thing about all this is the fear, the not knowing what will happen, and the anticipation before it does.  In my case, anyway, after the various proceedures are over it didn't seem so bad after all. 

My Onc says I need to take care of my sleep apnea first...get the cpap machine and start sleeping better so maybe the chemo won't knock me down.

Thanks to Susan for all your support.

swimfan

Yeah Gina...so glad you are finished! I am now back to the baseball cap after switching from CMF to Abraxane. At least I'm cool for the summer heat we're apparently having. Hey be prepared for the possibility of CURLS!

I go in next week for a bronchoscopy @ Swedish ...scoping my right lung. My diapragm is paralyzed and is leaning stuck against the lung...which is explaining my shortness of breath and dry wheezing cough.Some summer vacation so far...

 Cancer Sucks 

Anonymous

Robin - sending you a big old cyber margarita.  Cancer does suck - there is no other way to put it.

I hope that you have a good weekend, and the scope is a quick procedure.

Susan

tkone

Hi Deb,

Glad to hear you made a decision.  I think sometimes it is the taking of the action that is helpful, just knowing that we are doing SOMETHING!  Keep us posted on how it goes. 

Robin, I have been thinking of you.  I will keep my fingers crossed for good results on your test.

Madge24

Gina -- Lookin' gooooood!!!

Robin -- Hang in there.  I am thinking about you and hope your test goes well.  Let us know how you are doing.  The waiting and not knowing is so hard.

Tina -- good to hear from you!  Glad radiation is going okay.  Something I have to look forward to this fall!

 Take care all.

PAP

Hi Girls....I'm new to this particular thread...don't know why I didn't check it out earlier.  My address is Everett, however, Mill Creek, Lynnwood, and Bothell addresses surround me by a block in every direction.  Weird.  I also struggled with the decision to do chemo, then had to make a choice between six months of CMF (weekly) or four cycles of TC.  Finally decided I just wanted to be finished with chemo and radiation in this calendar year, so I've had round one and have my second TC tx next Tuesday.  Even though I was expecting some harsh SE with the taxotere and cytoxan, I was lucky with the first round and worse SE were headaches.  Hope to be as lucky with the rest of treatments.  And just on cue, the hair began falling out on day 14 and was such a mess, even with short hair, my hubby finally buzzed it yesterday and the head feels so much better.  However.....I do look like a cancer patient now.  Reality has set in  Patti

swimfan

Thanks girls...I especially like the virtual margarita! Have any of you tried acupuncture? I think that is next on my list of things to try.

Welcome PAP . Happy 4th everybody. Can you believe this weather?

Madge24

Patti -- Welcome!  I'm on T/C too; 3 done, 3 to go.  You will get through it, I promise.  I've heard of others having the hubby buzz the head, too!  My onc nurse said my hair would start growing in even before the last treatment, don't know why, but that's what she told me.  Hang in there!  You'll get used to the bald look.  I wear a wig but not at home in the house as it gets kind of hot.

Peggy

tkone

Patti-welcome and I'm sorry you have to be here.  Seattle is used loosely around here.  I don't think any of us actually live in Seattle.  We are spread out all over the Puget Sound area and beyond.

Robin-I have done acupuncture.  I did it for chemo-bone pain issues and it worked VERY well.  I have also done it for post chemo hot flashes (chemo-induced menopause) and it has worked, but not nearly as well as I would like it to.  I had never done anything like it before in my life so was skeptical.  But for chemo, I would recommend it in a heartbeat.  It made the whole thing doable for me.

Hope everyone has a great 4th.

Tina-in-Seattle

Gina you look great!  Glad you've ditched the baseball cap.  Mine is still pretty thin especially on top.  Why is it that the sides and the back come in so much better than than the top?  Madge my hair would grow in between treatments so I'd have to shave as the little buggers would fall out and drive me crazy!  Radiation is not that bad acually very different from all the company in th chemo lounge but much quicker.  Just remember to keep greasing.  I got some stuff on line called My Girls Radiation Cream, I'll ps you with the link it's good for the day time.  At night I use the Aquaphor and lay it on thick.

Welcome PAP, I'm also in your area.  Bothell/Mill Creek.  Where are you getting treatments?  I also did the Cytoxan/Taxotere cocktail.  The se's were not that bad.  I did 4 rounds total.  Does your onc have you take steroids before and after treatment?  That helped me.  You'll get through it the worst thing for me was the feeling that my head was full of sand.  LOL!

Happy 4th to all and enjoy this great weather!

T

PAP

SWIMFAN....Yes, I get acupuncture the day before tx and on day three.  Then once a week on the off weeks.  I am convinced that is one reason I've been doing so well with the TC.

TINA....After having four different consultations in the Puget Sound and checking out the different facilities, I landed in Everett at the Providence Regional Cancer Partnership and have been very impressed and happy with everything there so far, plus the parking is free!  I do get steroids that I start the day of tx and for two days following.  My biggest SE was a headache everyday up through day 14.  I drink lots of water normally and added electrolytes the week of tx, but still got the headaches.  So I'm going to try to remember to tell onc about that before next tx on Tuesday.  Water tasted just terrible with a thick hairy tongue from about day 3 - 10.  Not looking forward to that again...but if that is my biggest complaint I will be thrilled!  Patti

Madge24

Ladies:  From today's Seattle Times "People's Pharmacy" column (Page H6) -- FYI

"Q:  I am a breast cancer survivor and have heard that some sunscreens contain estrogenlike compounds.  I cannot have anything that contains estrogen in or on my body, so I would like to know any brands to avoid and which brands are safe.

A: Benzophenone-3, also known as BP-3 or oxybenzone, has estrogenlike activity.  We suggest looking for sunscreen that has physical blockers such as titanium dioxide or zinc oxide.  These have no known hormonal activity."

I would have never known that had I not read it tonight.  Enjoy your evening.

Peggy

cheers247

Hi ladies!!

 Peggy, thanks for the sunscreen info, I never would have thought about that!

Gina, you look great!!  I can tell by the chair you are sitting in and the curtain that you are at SMC.  I do my chemo on Tuesdays, maybe I'll see you there.

I thought my last AC would be on 7/14, but now my onc wants me to do Taxol & Herceptin x12 more rounds !!  I'll have to be inpatient for the infusions becasue I am allergic to Taxotere, and am likely to react.  I am so discouraged by this news, and am requesting another PET scan before the final decision is made to see if the AC has made any difference.

I was hoping to have my surgery in Sept. (bilat mast & totaly hyst), but this will push the surg to Dec. or Jan. and I have 6 weeks of daily rads and a year of Herceptin to look forward to after that.  Yuck...  I think I'm feeling sorry for myself now.

Anyway, we had such a beautiful weekedn here in Seattle!!

Love to you all!!  Jessica 

lovinmomma

Hi there westsiders!  I am over here on the east side. Hope you all had great weather this weekend. We were hot and now we are cool and rainy! Welcome to Washington.

I am glad to read all your posts and see you all doing fairly well.