Crazy Sexy Cancer in Seattle

raincitygirl

frosty1, I love to walk lately.  And need to....:)  Can't stray too far from toilets though so I have been doing the downtown park a lot...

golfer779

Jodimaca, from one CMF-er to another I hope you find the regimen as tolerable as I.  Although its a rather long drawn out process and choking down those cytoxan pills is rather a chore, the overall se's seem to have been rather minimal.  I chose to take a Zofran each and every morning prior to taking the cytoxan and basically never experienced any nausea. 

If you ever want to bounce any questions this way both April1 and myself are good resources.  Hope to see you in November !!!

Carol

Anonymous

Hi Seattle gals - sorry I have been MIA - husband has a new job where he is currently traveling a ton - so that makes me a busy girl!  It's a great job, so I am happy, but busy!  I have penciled in the 16th - would love to see you all!  Jodi - hope CMF is going well.  I am completely out of touch here - except for Madge24 who is my neighbor, and Carol, who I can also see locally. Jodi - along that line about something in the water - I think there is something in the water over here.  I know WAY too many women on Bainbridge and in the surrounding area that have bc - most under the age of 50.  It is scary.

Carol- congrats on the final touch!  Sounds like you are happy!

Pam, and anyone else new to this thread - please, please come if you can - these get togethers are so much fun, and better than therapy.  

Hope to see you all on the 16th - one month from today!

frosty1

Jodi -- I know the reaction and the bathrooms.  I had my walks all mapped out and the bathroom locations.  It was miserable sometimes.  Since I finished the main event (6 rounds TCH), I'm upping my walking game.  Working on doing the Seattle half (walking).  The crew at Team Survivor Northwest is awesome -- they have a walking group every weekend.  Tomorrow we are doing 7-8 miles starting at Golden Gardens park.  Next weekend my daughter and I are participating in Thrill the World -- a benefit/dance event where we dance to Thriller at the same time as thousands of other peopel around the world.  We are out at Redmond Town Center.  So staying busy.

Yay for November 16 ... looks like we have a few new faces joining us.

raincitygirl

golfer779 and aprilgirl1 - I am so happy to have some CMF veterans to check in with.  I would say I am doing well, all things considered.  I have experienced nausea, but it has been at a reasonable level.  I don't like the zofran as it really caused the great clog, followed by senekot and it's results.  I have done ok without so far this week and I passed on the steroids this week as well.  I have had a few days in the last few weeks where I was not "doing" the norm, but otherwise, this sounds about right I think.

My important question, how is your hair???  What happened with each of you.  It is the primary reason I chose this regimen - hoping that it would be one less thing to deal with....

Frosty1 - I just did 3.5 miles with a friend in Kirkland, such a gorgeous day today.  Your walking may be out of my league right now but maybe I can get there!  The Thriller thing sounds like so much fun - I am going to talk to my daugher about it too.

Hoping for another beautiful day tomorrow....

I am so excited for November 16 or thereabouts...

Frosty1

golfer779

Jodimaca ... oh I do remember the joys of figuring out the ol' GI tract.  I'd say by the last couple of months I finally figured out how to regulate my Miralax intake with my Zofran, etc. 

 The hair ..... after infusion #2, I noticed some rather heavy shedding.  I kind of panicked thinking "oh boy .... I thought I wasn't supposed to lose my hair".  Bottom line .... the shedding subsided  and I never did lose all my hair.  Yes it was thinner (and I had short thin hair to start with) but it was not really noticeable to anyone other than myself.   I will admit that I have a friend whom was not quite as lucky while on CMF and although she did not shave her head, it may have looked better to have done so .  I'll pipe in for Susan (AprilGirl1), her hair looked great !!!

Hang in there gal !!!

pumela115

April1      I am so looking forward to coming and meeting everyone. My birthday is nov 11th so that will be my bday present to me   Do we know where we are going? I don't think i saw a post about it, but then i could have missed it too. (chemo brain) I also want to say Tues is great for me because i do chemo on wed. I should be in great shape. Please keep me posted as to where and what time. Hope to meet everyone on the 16th!!  Have a great day everyone!!!!!!!                                      Pam

Anonymous

Jodi - like Carol my hair thinned, but was not really noticably thinner.  My onc. warned me not to color it or it could fall out (really don't know if that is true but wasn't up for testing it) so I did let it go gray....kind of salt and pepper.  Now, there was daily hair shedding that was noticable in my own home, but I don't think to most people.

Carol - thanks for the compliment on my hair - I have to say that I am happy with it now

My onc. had me take prilosec daily and I had compazine for nausea that I took the day of infusion and the next day.  I had zofran with infusion.  

GORGEOUS day -love this weather! 

Issymom

Wow, lots of posts and new people.  I am excited to see everyone on the 16th.  For the new people, Vmarie and I joined this group last March.  Everyone was at different stages (just starting chemo, 1/2 way through chemo, done with treatments for less than a year, some more than a year, some doing reconstruction).  I thought it was great to be with women at all different stages of the journey. 

Yes, I do live in Issaquah.  I hope there is nothing in the water as I don't want any other friends going through this but my neighbor behind me was diagnosed with Ovarian Cancer two weeks after my diagnosis.  Both Stage II and both done and cancer free (yeah!). 

Frosty, when is the 1/2 marathon? I might consider doing that since I did the 3-Day.  Trying to stay motivated.

frosty1

We're on for November 16 at the waterfront Red Robin (for our 'across the water' friends).

Lorrie -- the Seattle Marathon is the Sunday after Thanksgiving.  You can run or walk the full or the half.  We're gearing up to walk the half.  It should be a good break after all that turkey!

raincitygirl

Frosty - what time will that be?   

Issymom - I am going exactly for the reasons you describe - to meet people in all different stages.  Hopefully that provides lots of positive encouragement.

I am loving this week without cytoxan - I feel pretty good and am hoping this is my new normal during the chemo part of life.

raincitygirl

Aprilgirl1 and Golfer779 - you are MIA - will we see you on the 16th?  I hope so.  Ate like a hog at my birthday party last night.  I am already 25 lbs. over, so what the heck.  I am walking as much as possible though...

Anonymous

Hello! My name is Susan and I live in Gig Harbor.  I am 43, been married for 19 years and have a 16 year old son. I am recently diagnosed.  It's been a bit of a whirlwind to say the least.  Mammogram, ultrasound and biopsy all on the same day (10/06) Radiologist was positive it was cancer.  Got confirmation 10/8, met with BS 10/11, and just met with PS yesterday..... and am awaiting a date for my surgery as we speak!  I am opting for a Bilateral Nipple/Skin Saving Mastectomy.    It is hard waiting to find out if I will need to get chemo...but I'm preparing for it so I won't be too disappointed.  I meet with a natural oncologist AND a medical oncologist at the Seattle Cancer Wellness and Treatment Center next week to have a consultation.

I'm am researching like mad this site has been a wealth of information for me.  For me, the more I know, the more powerful and in control I feel.   I've had my moments but for the most part I am staying positive, finding the humor and attempting to not let this "lump in the road" , so to speak, completely take over my life.  I feel very fortunate to have such a supportive husband (knew he was great... but he has just been amazing through all this), family and an amazing employer who is letting me take off all the time I need at full salary.  I feel very fortunate.

I have been placed on this journey, not by choice, but I am going to damn well make the best of the situation and come out stronger because of it.  

Madge24

Susan,

Welcome to the club!  I'm sorry you have to be here but you are surrounded by supporters who will help you get through this.  I live on Bainbridge and was treated at Swedish.  If you like, join us on the 16th of Nov. -- sounds like the crowd is getting together for dinner at Red Robin across the water, right off the ferry.  This group has been so helpful so I'm glad you are checking in and getting support.  Sounds like you have great support in friends and family and employer!

You will be stronger for it!  That's how I feel.  Take care! 

Anonymous

Thanks for the welcome Madge! I would love to come on the 16th...where do I find out more details?

tkone

Hi  Susan

Welcome to the Seattle message thread.  Even though we all want cancer to just go away, we are always happy when people find us.  I was exactly the same age when I was diagnosed (I am now 45).  I know it is a whirlwind, but am so happy that you have good supprt.  I hope you will find support in all of us as well.

We generally get together about once a quarter.  Sometimes there are only a few of us, sometimes more.  We always meet at the Red Robin on Pier 55 because so many ladies are coming over on the ferry.  Our next one is planned for November 16th at 6:00.  It is generally under my name (Tracy) if I happen to get there early, but we are never hard to find.  Look for the table full of ladies-usually laughing!

I hope you can join us.  For everyone else, it looks like November 16th is our official date for our next dinner.  (Don't you just love when things come together like they are supposed to??)

I hope everyone is doing well.  Life is crazy, busy here, but am so glad I have been able to catch up with a few of you at the Holland America event or the 3 day walk!

Tracy

seattle_sister

Hi everyone -  been absent for awhile, but would love to come to the 11/16 dinner and meet everyone.  I'm also in Issaquah - bad water here or what?  Looking forward to the 16th!

Anonymous

I will definitely try to make it on the 16th!  Just got my surgery date of Nov 30th...so I would love to have a night out of laughter with people that understand the journey I am about to embark upon. 

Issymom

Susan & Seattle Sister - We look forward to meeting you on the 16th.  It is great group of women and we have lots of fun.

SusansGarden - I wanted to let you know that last December I had a bi-lat Skin & Nipple Sparring Mastectomy.  I will start reconstruction in January (my choice to wait so long).  Let me know if you have any questions. I would be happy to talk to you if you had any questions.

Lorrie

cyntyler

Hi All,

New to this group and new to BC. Recent diagnosis after finding lump while showering and has been world wind since then (8/21). Had unilateral mastectomy on 10/7 and chemo to start 10/29. My chemo treatment will consist of 6 treatments each 3 weeks apart. Chemo drugs will be Cytoxan and Taxotere with Neulasta the day after each treatment.

I am divorced mom (56 yrs) of two grown daughters (27yr & 25 yr) with two grandsons (2 & 4 yrs), one grand daughter (2 yrs) and a new one on the way due March 2011. My youngest and her two sons live with me in my house in Edmonds. The second daughter is close by in Mountlake Terrace and they have been wonderful through it all. I am a client service manager at a large speciality & emergency (24-hr) veterinary hospital in Lynnwood, although I feel out of touch with that part of my life having been off for a month.

I would not have wished to have this disease, but I have appoached the journey as a learning experience and that has worked to help keep me well emotionally . . . so far so good. The day that I heard about my chemo treatment was the one day that I kind of freaked myself out, but am back to a good place and ready to go forward.

As you can see from my diagnosis, I had a 4.2 cm lump, but also had a second 1 cm lump about 7 cm away from the first so the BS said that the mastectomy was the best choice. So far I have had nothing but the best doctors and support staff.

Well enough about me . . . I am looking forward to reading back through all of your posts to help get acquainted with everyone and have put the 16th of Nov on my calendar and do plan to be there.

Cindy Tyler

Anonymous

Welcome new posters - sorry you are joining us, but this is a group that you will enjoy. 

Jodi - hope you are fairing well.  I had to take that cytoxan EVERY day for 6 months.  YUCK.  You will be done before you know it.

I am planning on the 16th, but my husband will be out of town   .  What that means, is that I will be late (taking the 5:30 ferry at the earliest).  So that puts me there around 6:30?

Jodi - I have been mia - crazy busy kids schedule along with a traveling husband make one busy woman.  No complaints!

I need to get back to my yard work - need to finish planting bulbs and splitting irises - before the storm really hits.

golfer779

Hello "old, newer and newest" of our wonderful "crazy gals".  I've got thed 16th on the calendar and plan on seeing y'all.   Yes ..... there is a light at the end of the tunnel, hang in there ladies.

raincitygirl

aprilgirl1 -  My husband has traveled for most of our married lives, though that has decreased quite a bit this year - but as it happens, the 16th is the one day this month he will be out of town. I am impressed that you got through six months of daily cytoxan - I feel so damn good the past two days, like I am recovering from my first assault of CMF.  I shouldn't call it assault - I should call it my co-warrior or even my friend.  Or so I was told

And to the rest of you, I am excited to have plans to meet others who have shared this journey.  

It is a true rainy, Seattle fall night - we just got back from dinner and it was pretty wet but nothing like the wind and rain we are forecast for the morning.  Frankly, I particularly love it on a Sunday morning when there is nowhere we have to be.  So bring it on Mother Nature - I will be curled up, watching and listening.

Anonymous

I am so excited to meet everyone on the 16th!

I have a couple questions for you locals....

Has anyone gone to the Seattle Wellness and Treatment Center in Renton..it is a Cancer Center of America affiliate.  They practice a type of chemo that is administered once a week that is supposed to have less side effects.  They also use holistic treatments along with conventional..i.e. accupuncture.  Since my insurance pays for natropathic medicine too,  I thought I would check it out and I have an appt with them next week.

Also..wondering if anyone has here has tried the Penguin Cold Caps..saw the thread about them..they supposedly have been successful in people keeping their hair during chemo but sound like they are a lot of work. 

raincitygirl

SusansGarden - my onc offered me a once a week chemo regimen, it was CMF.  I chose to do the CMF every 28 days because I really didn't want a port so less sticks, I should be able to get through without one.  I have finished round 1 and agree with all who have said that it is doable - I am happily surprised.  My onc does not allow patients to use Cold Caps because there is some thought about the chemo getting to all areas.  I have spoken with an acupuncturist who I have used in the past and really liked and I have gotten approval to use acupuncture when it becomes necessary, but I have heard that it is most valuable during radiation.  For round 1, I have done a bit of shedding and noticed dry skin, nails, mouth, nose (and more), but it has been ok.

Anonymous

Thanks for your answer jodimaca   That is nice you didn't have to get a port.  I assumed all chemo IV treatment needed a port?  I still don't know if I will need chemo..but know I will def need hormone therapy.  Just like to be prepared I guess ~ so I can think about some of these things in advance and possibly make some preliminary decisions logically and not out of panic.  I know sometimes logic takes a back seat when my emotions run high.

I have heard that about the penguin caps...but the gals on the thread say that's not true.  Oh gosh, what to believe?  There seems to be so many choices!  

raincitygirl

SusansGarden - I am in the midst of my two weeks off chemo and I feel so good - I know we all respond differently and this was only my round 1, but I have to wonder if you feel just a little crappy every day if you do the weekly or if it milder enough that you don't.  I am grateful for these two weeks of feeling normal more than I ever imagined - my husband and I have been running around, getting things done, having fun, eating out. As for the port, I don't have big lovely veins on my remaining useful arm, but they were willing to let me give it a shot - the two unfusions I have had so far have not caused me any discomfort at all in the arm.

Are you waiting on your oncotype to hear about the chemo?

tkone

Its funny, but this thread seems to go inb waves.  It will be really quiet for awhile and then there is a flurry of activity.  I am looking forward to seeing everyone on the 16th.  As we get closer, I will try to get an accurate count. 

Cindy-welcome.  I know how the whirlwind goes.  Just deal with bite sized pieces if you can so you don't get overwhelmed.  I did Cytoxan and Taxotere and I think there are others here who did the same so we would be happy to answer any questions.

Susan, I did acupuncture during chemo.  Had never done it before, didn't believe in it, thought the whole thing was a load of hooey, but I have to tell you----it worked.  It helped immensely with the bone pain.  I did it once the day after chemo and then about a week before the next round.  I tried it again for hot flashes since I am now in chemo-pause and it helps, but wasn't as successful as I would have liked. 

I see a ray of sunshine in my yard!  I better get out there--quick!!

See you all in a couple of weeks.

Tracy 

Anonymous

Jodi- That is nice to hear you don't necessarily HAVE to have a port. ... and I'm waiting until the pathology from my BMX (sched Nov 3rd) to hear about chemo....not sure if they will do an onco score on me or not..i am planning on asking a TON of questions at my meeting with the oncologists this Thursday.  The only thing I know for sure is that they will want me to do hormone therapy.

Tracy-I heard great things about acupuncture after chemo as well!  I've never done it before, but have always been curious to try it.  Now's a good a time as any!  

cyntyler

Thanks for the welcome. First chemo coming on Friday - T/C & Neulasta - has anyone had treatment at Swedish Cancer Institute? What is the treatment area like - open room, screens, rooms?