Crazy Sexy Cancer in Seattle

Madge24

Cheers247 -- I'm also at Swedish but my day is Fridays!  Take care!

Peggy

Anonymous

kim - we had the same kind of weather - now it is nice, sunny and warm again.  I have been busy with house guests.  They left yesterday - of course it was cool and overcast while they were here - oh well!

Jessica - hope this week's chemo went well. 

Madge24 - hope chemo went well today!

Everyone - hope you are all doing great and enjoying the sunshine today!

Susan

Anonymous

kim - we had the same kind of weather - now it is nice, sunny and warm again.  I have been busy with house guests.  They left yesterday - of course it was cool and overcast while they were here - oh well!

Jessica - hope this week's chemo went well. 

Madge24 - hope chemo went well today!

Everyone - hope you are all doing great and enjoying the sunshine today!

Susan

ginagina

Ooh, it has been quiet here for a couple of days. Everyone must be enjoying the good weather. Hope  all is well.

tkone

Hi All,

Had a check up with Dr. Rinn today and my second round of Zometa.  I finished chemo on September 9 last year so this is my 10 month check up I guess??  She was very pleased and told me to go away and not come back for 3 months.  I am hoping that this round of Zometa will treat me nicely.  Last time I had flu like symptoms the next day which was no fun.  I intend to spend the day laying in the sun whether I feel like crap or not!   

Also got my medical clearance to walk in the 3 day which is good because I was going to do it anyway!  My 3 day team bought the cutest pink scooter to action off as a fundraiser.  I will have to post a picture of it---it is so cute!

I hope everyone is doing well and enjoying the sunshine.

Madge24

Hey Girls in Seattle,

It's been so quiet on the thread I imagine everyone's out enjoying the sunshine while they can!  My nurse suggested we celebrate after chemo's done so we decided to go to Lake Quinault after last tx...anyone been there?  We got a cabin so we could take the dog!  I have two more tx to go.  Nordstrom sale starts tomorrow, Ladies!  Shoppers ready??  I've gotten out more this week and it feels good.  I used to run up a hill here -- RUN -- and now I walk it and am huffing and puffing.  My dr. told me it will be MONTHS before full recovery from chemo.  She's giving me a month off between chemo and radiation.  I wonder if that's standard.

Peggy

PAP

PEGGY....I too am wondering how long between chemo and radiation.  I had plans in late September, but if they won't let me postpone radiation, then the plans are out the door.  My last chemo will be August 18 and I have a feeling they don't want to postpone the rads too long.  Patti

Anonymous

Hi ladies

Glad to see you all here but happy to not see you either....that makes alot of sense huh? Im happy to see all is progressing well with everyone and that you all are enjoying the summer is what I actually mean...

We had a nasty storm last weekend so was without power for a few hours but nothing too bad....

On July 6th I pitched the ceremonial first pitch for the Spokane Indians baseball team as I work for WA Dept of Fish & Wildlife(who was the main sponsor of the game)....was really nervous since I know exactly NOTHING about baseball....I practiced daily for the two weeks prior to the game and made the pitch without throwing it left or right....it went right to the catcher....I was AMAZED!!!!! It was a wonderful experience...

Since then I havent done much but work....want to go camping this weekend but too many other things going on so it will be a couple of weeks yet before we get to go

Hope everyone stays on the good paths they are on now...

Best wishes from the Southeastern part of the state......

Jule

Anonymous

PS-for those of you wondering about the wait time between surgery/chemo and rads....

I didnt have chemo so not sure about the time for that but I know that at first they told me approx. a month between surgery or chemo to rads as they want to give the body time to heal....

They told me that there is a 12 wk window that they try to get you into....they believe that windows gives the best use of the treatment....basically it doesnt give any stray cells that might be floating around in the area time to regenerate.

I started my rads on the 11th week after surgery.

Jule

tkone

Peggy,

Forgot to answer your question about rads.  I finished chemo on September 9 and started radiation on September 30.  However, that was by choice.  We were going to Hawaii in November so I wanted to make sure to get all of my radiation in before I left.  They will work with you a bit if you have a preference.  I think they like to give you between 4-6 weeks generally.  As far as feeling better, it is relative I think.  Once you complete chemo, you will feel better within a couple of weeks.  You won't feel back to 100%, but you will feel better than during chemo.  Radiation is really pretty easy unless you have skin problems, but at least in my experience, I didnt' feel any type of fatigue or have skin issues until about week 5, so I had 4 weeks of feeling better.  The fatigue with radiation is significantly different than the fatigue with chemo.  Chemo fatigue is the wet noodle, muscles giving out, bone tired type of fatigue.  Radiation is more like how you feel if you didn't get quite enough sleep-like maybe you should go to bed a little earlier.  It is much more manageable.  The worst thing about radiation is that you have to go every single day so it is a commitment and a reminder that you are still fighting.  However, it took me longer to park and change my clothes then it did on the actual radiation table.  I parked, changed, did rads, applied lotion, got redressed and got back out to my car in less than 15 minutes every day.

Someone told me that people who don't have to do chemo think that radiation is difficult and people who had to do chemo think that radiation is a piece of cake.  I agree, in comparison to chemo it was a walk in the park.

Feeling good today after the Zometa infusion so since I made no plans just in case I was feeling crappy, I have the whole day to myself.  Going to take myself out and float on the lake! 

Madge24

tkone,  Your new pic looks great!  Thanks for the explanation on the break between treatments, that was very helpful.  I figure it will be like a part time job for me because of the commute on the ferry taking more time.  I'll have the boat schedule memorized, certainly!

jpann -- Thank you also for info on the breaks and the 12-week window.  That is very interesting, I had not heard that.

PAP -- We finish our chemos the same week.  Yeahhh!!!  My last one is Aug. 21, 3 days after yours.

Aprilgirl11 -- Good luck with surgery on Monday!   I know it will go well.  I am thinking of you!!!

If you all think it's too dry around here, let me know and I will do a rain dance.  Me, I'm enjoying the sunshine!

Peggy

jeanbean

Sending out a big bundle of positive, healing thoughts to Susan who, as Peggy mentioned, is having her surgery today!!!

 Peggy--I've been to Lake Quinault and it was gorgeous. We went during the low season so it was pretty rainy but still beautiful. There's lots of nice trails to take walks on (though some of them were submerged when we were there:) )

 I've been enjoying the sun too and enjoying the reprieve from appointments and tests. My mother's breast cancer team doesn't want to see her until Sept so she just has a liver CT between now and then. And I don't have to see anyone for a few months! Yea!

golfer779

Susan .... sending healing vibes for a quick recovery gal. 

Need to catch up here at BC.org ... just spent a week in Vegas with a group of gals that I've chatted with from a Chemo Jan 08 group .... it was everything I could have possibly expected and beyond !!!!  Bonds like no others !!!!!

tkone

All,

I am in Vegas too, although for a conference.  Went to see Zumanity have never seen so many boobs in my whole life.  Gosh there was a lot of skin in that show.  But so fun and I laughed my tail off. 

Carol-just a zometa question for you.  This morning woke up to the MOST painful charlie horse in my calf-thought I was going to have to amputate my leg!  I know muscle cramps are sometimes a side effect.  I had my infusion on the 16th....have you ever had those kind of problems?  It concerns me that it happened right after I flew---the words blood clot float through my brain and then I start to panic.  It has been painful all day long.

Susan-sending you good thoughts.  Hope you are doing well.

golfer779

Tracy .... YIKES !!!  Never had had any major muscle cramps after the Zometa.   Shoot .... don't want any either.   So maybe just a coincidence ???   Forgive me, but I can't remember if your on an AI or Tamoxifan.   I do know of a couple of gals who end up going off of there Tamo if they are going to be flying for any length of time.

We didn't do any "boob" shows, did see the Circque Beatles show and also Menopause the Musical (which was a "hoot") !!!!!

Susan ... time for the "girls" to heal eh ????? Hope your doing well !!!

lexislove

Hi ladies...I'm sorry to interupt, but I was wondering if any of you can help with a little challenge I am having right now..

I am wanting to get the Tamoxifen metabolizing test done, the CY2PD Test. I am in Canada, Vancouver area B.C. The test is very expensive up here and it can take up to 12 months to get the results. I was thinking of maybe doing the test in the Seattle area to cut costs and speed up the waiting period. I really, need this test done.

Questions:

1. If my onc refers me to have the test done, am I able to do so in the U.S. even if I reside in Canada?

2. Where do I look? Anybody know of hospitals or clinics ect.? I have no idea where to even start looking.......

Any help would be appreciated. ~*TIA*~

Anonymous

lexislove - my oncl. ordered that test for me - she said it will take quite a few weeks to get the results as it has to be sent to the Mayo clinic - I guess they are the only place that does it.

I go to Seattle Cancer Care Alliance, but I would think that there is a place in Bellingham or a bit closer for you that could order it.  It is just a blood test.  I have no idea how you would pay for it, or how much it costs.  I would think that you could get the test done but it would be at your expense as you don't have health insurance in the US (don't get me started on our healthcare system!).

If you want some Seattle oncologists names I can PM some to you.

Susan

Anonymous

Hello everyone!  I am doing fine - still a bit sore (to be expected) and am pretty happy with the girls - even at this swollen state.

I hope to never have another surgery - the anesthesia really makes me sick - ugh!  Heidi Sue I should have asked you for some pointers, but they tried a bunch of drugs for nausea that did not seem to help.

Anyway - thank you for all of your kind wishes thoughts etc. Madge - I owe you literally for the dog wartching, and Jean, we loved your soup!

Carol - wow - the wedding is here already!  Such a beautiful time of year!

Susan

lexislove

april..thank you for responding.

So if I get a request from my onc..I should be able to take it where ever.?

 Yes, Bellingham would be closer for me, should I just google Bellingham Cancer Centres?

Madge24

Lexislove -- Even though you live in Canada, as Aprilgirl says, you can get a test done in the U.S., you just have to pay for it (they take credit cards usually) when you get it.  We used to go to Madrona Medical Group, a large medical practice in Bellingham and you could call there and ask them for a referral to oncologist or just a lab.

Then call the lab and see if you can just go directly to them and pay for it or if you need a referral from a U.S. doctor.  If a technician or receptionist doesn't seem to know, talk to the manager of the lab.  My sense is they have encountered this before.  Ask them how long it will take to get the results.  In some of these outlying places I don't know if it will be as fast as they do things here in Seattle.  If you need names for the Seattle area, let us know.  Seattle's not that much further, a couple hours drive, so don't fret if Bellingham doesn't seem to have much in the way of cancer care.  I used to drive that stretch all the time. 

I used to live in Vancouver BC and this question of getting care in the U.S. came up when friends needed something done right away.  Let us know how it's going.

Peggy

HeidiSue

Lexislove - I had an issue with my insurance company paying for my oncotype test here in the US and I googled the name of the company and called them.  I found it helpful in terms of getting a price quote and finding out if they any programs to help offset the expense ($4000!), which they did.  I don't know if that would help you or not.  Good luck getting it all sorted out.

 Susan - I'm sorry you had so much nausea.  I have the same problem with general anesthesia.  Unfortunately that surgery seems to be associated with nausea more than some.  I'm sure they tryed all their tricks - some people just seem to get nauseated no matter what we do!  I'm glad you are feeling better.

tkone - have you had any more muscle cramps?  I'm still getting chemo - CMF - and have woken up several times now with painful leg cramps.  I asked Dr. Rinn about it and she thought it was just a coincidence and not related to the chemo.  I thought it might be due to an electrolyte imbalance from the tons of water I drink everyday to flush out the cytoxan.

Heidi

tkone

Hi all-

Hope everyone is looking forward to a great weekend.  Heidi-I only had the one night of leg cramps although my calf was very sore the next two days.  I think it was just a coincidence??  Although, I will say when I was doing chemo, the benadryl and the steroids, made an existing condition of restless legs much worse. 

Also, as promised, here is a picture of the SUPER cute pink scooter that my 3 day team is raffling off tomorrow night.  Can you just see me zipping about the city??  My girls want me to buy all of the raffle tickets so we are sure to win it.

HeidiSue

Tracy - I hope you don't have any more leg cramps like that.  When I've had them they haven't been sore the next day.  That scooter is SO cute!  I bought a Vespa a few years ago, rode it for a couple years then got nervous about big cars and inattentive people and ended up selling it to a Vietnamese couple who had ridden scooters in the city their whole lives.  I hated to see it go though.  Guess I'm a chicken.

Beautiful and hot day in Seattle, hope everyone is able to get out and enjoy it.

Heidi

PAP

For all us Northwest gals....are you familiar with a phenomenal place called Harmony Hill on the Hood Canal.  Website is harmonyhill.org.  They have all kinds of retreats, day events, etc. for cancer patients and their families at no cost.  Check it out......Patti

Anonymous

Went there, thought I had died and gone to heaven! I have never felt so thoroughly nurtured and understood.

I don't come here often, 'cause I'm not doing chemo, but do check in 'cause I live in Seattle...First Hill, even. All my docs are within a few blocks. I worked at Swedish Hospital for years, so feel right at home.

When I checked in just now, I was floored to see a member named HeidiSue! My daughter had told me she came here a few times just to spy on me, but did she join?  Whew! It's another HeidiSue, not mine. I instinctively really like her, though. Wonder why?

Anyone who wants a coffee-mate, handholder, or just to hang out for a bit when they are in the neighborhood, PM me.

I'm having surgery next friday...implant revision...wish me luck!

Judie

Madge24

Judie,

Always good to hear from another Seattleite!  I'm being treated at Swedish and have been happy with the level of care.  We definitely send our best wishes and thoughts on your implant revision!  Who's your plastic surgeon?

Aprilgirl --Hope the healing is continuing to go well.  I know it's not easy and I'm sorry you had the nausea!  Ugh, I remember it well!

PAP -- It's so funny you sent info on Harmony Hill! I just got that info. from another bc survivor and was going to pass it along to this crowd!  Thanks!  Would anyone let me know if you ever go?!  I would like to do it at some point.

Have a great summery Sunday all.

Peggy

Anonymous

Do it, Peggy. Harmony Hill is pure nurture. There's nothing else like it.

My PS is Wandra Miles. I get a huge kick out of her and she has done great work, IMO.

It's too hot to have fun so I guess I'll work for a while...Judie

cheers247

Hello!

tkone... That scooter is too cute!!

Susan, I'm thinking of you often, and hope you continue to heal well!

I thought I was going to be done with chemo with my last round, but my Onc wants me to start another Taxane with Herceptin (I was on AC before) So on 7/28 (tues) I will try another taxane (I am allergic to taxotere) they may have to admit me, but he thinks it's worth a try.  My bilateral mastectomy and total hysterectomy will be after Labor Day.  I am totally terrified to have both surgeries at once, has anyone else done this???  Things have really been getting to me lately, people stare at me so much, I wear a hat (it's too hot for my wig) it feels just awful, I feel like a freak.  It has been so hot outside!  Sea Fair is in full effect here in Seattle.  I hope everyone is enjoying the outdoors.  Much love, Jessica

Anonymous

Jessica - you sound great considering that you thought you were done with chemo, yet are going to try another taxane.  Sending you p and p t that it goes well and you are not admitted.

I would look around the board on your surgery question.  I have to think others have done so too - in my thinking it is one less surgery "down time" and anesthesia to deal with, but don't know what to tell you about recovery from either.

OMG - WAY too hot for a wig.  I am having hot flashes and with this heat - UGH!  I am a slightly sweaty mess. I am healing fine, and feel really pretty good.

Judie - glad you popped in.  I will have to check out Harmony Hill!  I will be sending p and pt for your surgery.

Tracy - such a cute scooter!

Carol - how was the wedding?

Hope you are all in a cool spot enjoying our hot weather!

 Susan

tkone

Judie-nice to see you back here...it has been awhile.  Wandra Miles did my reduction/lift surgery and everything went fantastic.  I agree with you, she is great. 

Jessica-I am posting a copy of a blog post that I wrote exactly a year ago for you to read.  I was feeling the same way as you and went to the Seafair parade.  I hope it will help.

Hope everyone is doing well.  By the way, the scooter was raffled off last night at a 3 day fundraiser.  We raised over $15,000.00!!  15,0000 dollars closer to finding a cure

http://tracy-breastcancerandme.blogspot.com/2008/07/kindness-of-strangers.html