Crazy Sexy Cancer in Seattle

tkone

All,

I was diagnosed with IDC Stage II in May of 2008.  I am currently going through chemo to be followed by radiation.

I am 43 years old, married with two children and a full time job.  Breast Cancer was definitely not in my plans! 

When I was first diagnosed, a friend gave me the book Crazy, Sexy Cancer.  I thought it was a great book and one of the things she recommends is to gather up a posse of other cancer survivors and patients.

I know that there are several people located in Seattle and the Puget Sound area on different threads, but if there is a thread for all of us, I haven't found it.  I thought maybe we could all get together on one thread just to compare notes and support each other through this.

Come on in, the weather is fine!  Well it is Seattle and raining in July

Hope to hear from other Seattlelites and wish everyone the best in their journey.

katirob

Hi Tracy -

     I think we're on another July chemo thread together.  I'm from Snoqualmie.  I was diagnosed in May 2008 and my profile looks a lot like yours.  Surgery at Swedish, chemo at Overlake.  I'm 58, married with one grown son, full-time consultant working at home for now, since I can't travel full-time like I normally do. 

      Hey ladies - who else is out there?  Maybe we can hook up in person some time when we're all having 'good' days (like we can predict them, right?).  Or maybe get a group of us survivors together for Susan G Komen run next year.  I was still too shell-shocked with my new diagnosis to even consider it this year.  But next year - yes!

      Wishing everybody a great week!

Kati

      

tkone

Hi Kati,

Yep, we are on the July thread together, but glad you found this one.  With the highest incidence of Breast Cancer here in Washington, I can't imagine that it is just the two of us on these boards.  Hopefully we will find some others and I would love to be able to get together and do the 3 day or any other events that work for all of us.

I did chemo round 2 today with no real problems.  Had an allergic reaction to the Taxotere which was weird since I didn't have it with round 1.  Odd, but just more Benadryl was in order for me.  Now I will take advantage of my couple of good days before I hunker down for the bad days again.

Hope you are doing well,

familyroks

Hi Ladies - I'm across the water in Bremerton.  I lived in the Issaquah/Maple Valley area for 23 years but with gas prices we just had to move closer to DH's work!  I mostly post in the May 2008 thread and there is one other Seattleite in that group.

I was diagnosed with IDC on 4/3/08 and had my mastectomy on 4/10 here at Harrison Medical Center.  I did 4 X A/C (DD) and today was DD Taxol #3 with my last one coming up on 8/13.  I can't wait!  I'm almost positive I will follow that with 6 weeks of radiation but still working on that decision.  Will also do 5 years of Tamoxifen.

And what is up with this weather anyway?  Is summer over?  My garden is so confused.

Its nice to meet others from the area.  I hope you are both managing well through your tx's.

~Adrienne

Anonymous

Hi ladies,

I'm further down in vancouver, WA and it has also been cold and rainy these past few days. Well that's the good ole Washington state confused about her seasons but you gotta love her. 2 years  ago we got together in Seattle and had dinner at the space Needle it was amazing!

I've been on the boards here since her conception and am on the Comsumer Advisory Board for bc.org. I just had my 5 year anniversay and have been dancing with NED happily.

Rovergirl

You can add me to the Seattle group - although I split my time between Seattle and Marblemount (where is Marblemount you ask - Highway 20 / Washington Pass / North Cascades National Park).

I am getting treatment at the Seattle Cancer Care Alliance and am involved in a clincial trial there so my treatment plan is unique - 12 weekly infusions of taxol, followed by 15 weeks of AC, surgery than radiation.  I just completed taxol infusion #9 today and found out this week my tumor has shrunk 70% - yahoo.

tkone

Adrienne, Pepper and RoverGirl,

Welcome!  I knew there were more of us Northwest folks out here.  Glad to have you join.  Adrienne, congrats on having only one more tx to go.  Good for you!  Gotta love milestones and accomplishments.  i am at 50% for the chemo, so at least have made it halfway through.

Pepper, I am always glad to hear from those that have made it to the other side successfully. Congratulations on your 5 years.  Now you can be an inspiration to all of us.

RoverGirl-70% shrinkage!  That is amazing!  Good for you.  That has to make you feel good to know that it is really working.  I had my surgery first, so there is no way for me to know if the TC treatments are working.  I just have to hope and pray that it is the right treatment for me.

I am going to an accupuncturist today for the first time to help me with the bone pain from treatment and the Neulasta.  Has anyone tried or had any luck with accupuncture?

Wishing everyone a good day.  There is sun in my neck of the woods...maybe summer is coming back to the Northwest??

Anonymous

Ladies,

Well I'm off to Las Vegas and will return on the 9th. Hope everyone has a great weekend and looking forward to getting to know all my fellow Washington Gals.

Anonymous

Hi ladies

Can a Southeastern Washington girl join you??? Im a lone duck in this neck of the woods and did start a Washington thread. All of the ladies but one that posted there are from your area and the one that wasnt is/was in the Pullman/Moscow area but is moving soon. I will bump that thread so you can see it too.....

A get together would be AMAZING!!!!!!!

I was dx'd in Nov 06 with IDC and this board has been a God send to me....

Happy to meet all of you (Hi Pepper!!!)

Jule

tkone

Jule,

Of course you can join!  Glad you found us.  I agree this message board has been great.  I have learned so much from the things I have read here and it has made it easier to go through treatment knowing what is "normal" or expected.  I get ideas here for questions for my doc or things to try. 

Where are you located at exactly?

Anonymous

Tracy

Im located about 20 miles north of Walla Walla. I have spent the last two weekends on your side of mountains though....my man lives in Centralia and work isnt allowing him to come here so Im going there. Hopefully it is short lived. He is trying to get the company he works for to transfer him here in October so we will see how that works.

Jule

tkone

Seattlites,

I hope the weekend treated everyone well.  The second tx for me has been much, much better than the first one.  I'm not sure where to put the credit except maybe lots of water and better eating than last time.  I also did acupuncture the day after this TX.  I wasn't sure about this and wasn't really prepared for it to actually work, but by this time last TX I was on my second day of pain meds. This time I have not taken more than an advil and actually had friends over for dinner tonight.  I think I am now an official acupuncture believer!

tx#2 (Day 5)

footprintsangel

Hi Gals, Do you want a Auburn Washington, I was threw alot 2004 lost mom 2005 same day as last year Was told I have stage 3 IDC, Surgery High chemo and now 7nodes in thyroid and Lymphedema. But each day is a gift. Angel hugs, Debbie

tkone

Hi Debbie,

Of course we want Auburn Washington!  You are in my area of the world.  You have been through a lot but am glad to hear you have such a great attitude.  Hopefully this group of NW ladies can help each other get through the good days and the bad days.

Hope everyone is having a great day.

 Tracy

Rovergirl

We are a pretty quiet group ....... I have taxol infusion #10 on Wednesday ..... am just now starting to experience minor neuropathy, nail problems and hair regrowth!  Although I'm expecting AC to wipe out whatever peach fuzz I have left....right now it's an unexpected surprise and I'm always looking for the positive.

Anonymous

Yes it is quiet here..

Rover-its nice to see you be so positive during treatment. It seems that we get kicked so hard by everything bc brings to our lives, which in turn, makes it really hard to stay positive sometimes.

But thats why we are all here isnt it? To give each other a shoulder to lean on if needed and to help each other as much as we can.

I hope all you Washington ladies are enjoying the weather since it is a little cooler on your side of the mountain!!!! Its suppose to be in the mid 90's here and apparently it is predicted to continue to climb and be in the 100's for the next week....since August and September are our hottest months I guess I should have expected it but DANG!!!!!!! does it have to do it over night?

Hugs to all

Jule

footprintsangel

 Hi Everyone, Auburn is hot and smoggy,  It takes my breath away, I have 3 fans going. I hope everyone take care in these hot days. I went in today to make an appt with my thyriod Dr and he wont see me til Oct! I told the nurse about the hurting and more swelling, I have not heard from her. Some of the Dr in Seattle are booked up or on vacation. Well Rovergirl I was bald after chemo and came back a different color. But now I am brown again.  Angel Hugs to all, Debbie

tkone

Everyone,

I went to a lecture at Gilda's Club of Seattle about a month ago and am now on their mailing list.  I don't know if anyone is interested, but they have their September schedule out.  I personally am going to try to attend the September 25th one that talks about how to talk to your children.  Mine are 10 and 11 and are handling things pretty well, but I am well aware they are approaching puberty and may start to have concerns about breast cancer as they develop. 

Also, I am thinking of going to one of the Look Good Feel Better seminars this month if I can make one work with my schedule.  There is one at Swedish and at Evergreen on August 18th  or Seattle Cancer Care Alliance on the 11th.  Let me know if anyone else might want to go to one and have the chance to say Hi!

Hope everyone is doing well.

Rovergirl

Tracy - 

I went to a "Look Good, Feel Better" Program in Anacortes last month.  It was emotional but fun .... losing my hair was much harder than I had anticipated it would be so going to the program which clearly discusses the challenges of hair loss and skin care did not make me feel better just stirred up my own anxieties.  Playing with all the make-up was fun - lots of quality products.  I  always had a pretty simple make-up routine - mascara & lipstick - so I had a lot to learn.   Still mystified with applying eyeliner ..... who can draw such straight lines????

Ruth1

Hi!

I am from Federal Way, diagnosed with bc 14 years ago, had a masdectomy and put on tamoxifin.  Then 3 years ago diagnosed with stage 4 bc. have had radiation, put on Femara pill, and Zometa, for 2 years.  Since then chemo Gemzar, Abraxene -- hair loss head, eyebrows, eye lashes and all over. Neurophy in legs to the point cannot walk  a lot.  Use wheel chair if a lot of walking is necessary, also a cane. Kidney problem, finally taken off of Abraxene, put on Aromasin, which did nothing for the cancer.  Now on navelbiene, which supposedly only (only) affects the white and red blood cells.  I have this chemo weekly, except for last week when my white blood cells were too low.  So I am having lots of fun, and of course will continue to have fun. I am really sorry that there are so many of us from the Seattle area.  Good luck to you all.

Roya

Hi All,

I lived in Seattle once .   Since you still do, I want to share this with you.  Near the Hood Canal Bridge, there is a place called Harmony Hill Retreat.  They are located on several beautiful acres .  Several times a year they host a 'free of charge' 3 day retreat for women with breast cancer.  They have a grant from the Bill & Melinda Gates Foundation.  They charge nothing for this retreat.  You are provided with caring, sharing, yoga, meditation, walks, natural food and much more.

I pasted a paragraph from their website here.  http://www.harmonyhill.org/                       -------------------------------------------

Welcome to Harmony Hill Harmony Hill offers a range of programs open to the public emphasizing individual wellness, stress reduction and sustainable living. Revenue from our wellness and rental programs goes to support our cancer programs, which are offered at no cost to the participants. The heart of Harmony Hill's mission is to serve those with a cancer diagnosis and those who love them.            

Harmony Hill's cancer retreats are weekend residential programs that help those facing cancer, and their loved ones, cope with the physical, emotional, and spiritual challenges of cancer.

Through stress reduction skills, guided imagery, daily support groups for learning and sharing, yoga, and massage, participants facilitate their own healing and restore quality of life.

Participants are treated to delicious, whole-foods meals, and opportunities for relaxation and renewal in a tranquil retreat environment of gardens, nature trails, beach access, and spectacular mountain and water views. All Harmony Hill cancer programs are offered at no cost to participants.

                                                                               -------------

This would be a nice 'getting away'  anxiety free weekend for those of you who would be interested.   I just wanted to share this information with you.  I lived in Seattle years ago and I loved it! 

katirob

Roya - Thanks for the info.  That's really neat.  I'm going to check it out.

     I've registered for a Look Good, Feel Better class on 9/22 at Overlake Hospital.  Will share what I learn. 

     Just wrapped up my 5-day 'recovery' from my last tx, last Wed (TAC).  Feeling pretty good today.  So far, this has been manageable - thanks to the anti-nausea meds.  I cannot believe some people on some of these threads aren't getting good meds.  Wow - it's a tough enough few days (fatigue, feeling yucky in general) without having to worry about getting sick.  I'm so thankful for my docs. 

     Good luck to everyone else for your upcoming tx.  Keep up the good attitudes - I'm convinced it helps :-)

Kati

Tx #3 (TAC) 8/27

tkone

Kati,

Just curious about your treatment plan.  I have almost the exact same diagnosis as you but I am only doing 4 rounds of Taxotere/Cytoxon.  I was told by an oncologist friend of mine (not my oncologist since he is out of state) to not accept Adriamyacin (sp?) unless my lymph nodes came back positive which they did not.  Did they give you some reason why you are doing 6 with the TAC?

Roya-thanks for the input on Harmony Hill.  I had read about it on another thread as well and checked it out.  It looks like a great place and if the timing works, would love to check it out sometime.  I hope life is good in Paris.  I would think a good Parisien baguette or a nice Pain Au Chocolat would help to make life at least a teeny bit easier! 

Hope everyone is doing well.  You have got to love Seattle in August! 

katirob

Tracy -

     The path on my tumor was a '9' on the Bloom-Richardson 1 through 9 scale - so not only was it a grade 3 but it was a super agressive grade 3.  Although my sentinel node came back negative there were 3 'suspicious' cells.  Doc says probably not cancer or may have broken off from the biopsy but just in case, they want to irradiate my armpit as well as the tumor site. 

     So, the onc discussed the TC 4 dose protocol vs the TAC 6 dose and encouraged me to go for the more agressive.  As long as I have to do it, might as well go for the big guns.  I got the same counsel from the surgeon (Swedish Cancer Center), the onc, and the radiation onc (both at Overlake).  So I felt pretty comfortable with this approach.  Hate it, but feel comfortable with it :-)

     No kidding about the weather - can you believe it - it's amazing! 

tkone

Kati,

Interesting.  My surgeon and my oncologist are both at Swedish as well.  I had a score of 9 on the bloom richardson scale as well.  Maybe the difference is that they removed 4 lymph nodes of mine.  The first 2 came back negative, but also with a couple of "suspicious" cells.  The 3rd and 4th came back clear though.  Maybe since they only took one of yours and it had suspicious cells in it, they didn't want to take the chance.  Makes sense and lord knows I don't want to have to go through chemo again so I probably would have made the same decision as you.  Did you have the oncotype test done as well?

Roya

What is the Bloom Richardson scale?

katirob

Roya -

Here's a web site that discusses it: http://www.ccrcal.org/Vol_1/BloomRichardsonGradeForBreastCancer_CA.htm

It's the scale they use to grade a tumor.  Any score of 7, 8 or 9 translates to a grade 3 tumor - meaning 'poorly differentiated' cells and agressive.

By the way, if you haven't gotten them already, you should ask for a printed copy of all your test results.  Although everything is pretty technical, it's helpful as well.  My surgeon (Dr Beatty at Swedish, by the way), walked me through everything and explained things really well. 

Tracy -

     No, I didn't have an oncotype test - didn't know about such a thing until after my protocol was determined.  I will ask my onc the next time I see her, why not. 

      In reviewing my test results, I see that the biopsy indicated that the tumor cells mitotic rate was 'high' (meaning rapid cell division and reproduction), had a 'high' nuclear grade (meaning more likely to spread than cells with 'low' nuclear grade).  Also the MRI indicated that the tumor was sucking up the radioactive material at a rate of 2400 times normal showing 'intense hypermetabolism' - yikes!  I'm guessing that with all this, my onc is thinking, like, let's just get this sucker!! Take no prisoners!!  I'll ask, but I'm guessing that's what I'll hear.  Don't ya think?  I know both docs talked about how metabolically active the tumor was, which isn't a good thing.

    So, that's what I know :-) 

 Kati

tkone

Kati,

Dr. Beatty was my surgeon too!  Small world isn't it?  I have a copy of my path report and I have high mitotic rate and high nuclear grade as well.  Now you are starting to scare me!  I am going to ask my doc.

BTW I had the oncotype test done and was all for it but then when I got the results back I went into full on panic mode.  I couldn't open it.  I can deal with all of my other numbers, but couldn't deal with knowing my personal percentage of recurrence risk.  I can't deal with a number.  I gave it to my oncologist and asked her if we were on the right treatment plan and she said yes.  I don't know if I will ever be comfortable enough to know the number. 

Hope everyone is doing good.

footprintsangel

 Dear Friends, How the  heat in Seattle? Its very hot here and I went in to talk to my cancer nurse and I have an appt for next week. Auburn fired my last cancer dr. I am very swollen and having trouble breathing ( inflamed thyriod and 7 nods) Have had a cat scan, But nothing else. I just wish they would take them out. I am also fighting for a lymphedema suit. Being medicare is my first insurance, They will not cover it, I have to find some help! It cost 3thousand dollars and my other one is wore out. Thanks for listening, If you know where I can get help please let me know. Hug to all, Debbie

katirob

Footprintsangel -

        It's beautiful here.  August is usually Seattle's best month, and it's living up to its reputation so far.  I'm so sorry about all your issues you're having - wow!  Hope you get some resolution soon.  One of my biggest fears going into this was lymphedema - with only one node removed I'm not too much at risk now, but they want to irradiate my whole armpit so later - who knows.  I fly twice a week for business so I'm a little concerned about that.  Sounds like you've got it in spades though. Had no idea about the cost of the suits.  So sad.  And I was complaining about having to pay for my wig!  Won't complain again.

Tracy -

      Don't freak :-)  I'm getting my treatment at Overlake (we live in Snoqualmie).  I think different oncologists have different approaches and they're probably all ok.  Swedish has such a good reputation that I wouldn't worry.  My onc presented both protocols and definitely pointed out the risks of Adriamyacin (sp?) - including a small risk of contracting leukemia and/or congesitive heart failure.  She didn't force it on me at all.  I decided that the risks were low enough to gain a little bit more assurance of no recurrence that I'd go for it.  There are no heart problems in my family so I'm counting on that.  Hopefully I made the right choice.  My onc seems to lean toward the very most aggressive approach - I sort of followed her lead.  But she definitely said the TC protocol was an excellent option.  So - don't freak.  It probably wouldn't hurt to ask your onc why TC and not TAC though, to calm your fears.

footprintsangel

 Katirob, Thanks for your support! Its 90 in Auburn right now. I am going see a new cancer Dr in Auburn next week, I found out they have 3 new ones. I went in and talked to the nurse and then she had me make another eariler appt. I hope he will help me and if not I need to make some changes, I have been told some places that will help me like Susan G. I hope I can find a way to get everything taken care of and enjoy my friend and Crazy Seattle friends! Sending some icy hugs, Debbie