Crazy Sexy Cancer in Seattle

Hey you Crazy Seattle Gals,

Penciling in the 17th (June) on my calendar.  Had a great visit with the gals last week, hoping that some others from the area will be able to share in the next get together.  Thanks again Tracy. 

Swimfan (would use your real name but don't know if your going for the incognito thing!), a "uni-mamm" huh?, crack me up ... and happy as heck for the all clear on "good" side.   I truly enjoyed your spirited personality and look forward to meeting again. 

Susan, so saw my Dermie doctor today, was waiting for the lecture on the AZ sun tan ... told her I was working on my Vit D levels.  She was pretty cool about it ... whew !

 Hope you all had some time to enjoy our lil' spring tease of weather !!!

Tina - welcome!  Hope you can make it on the 17th! 

Nothing new here - I go to chemo tomorrow (yes, on Saturday) and after this one will have 8 left - so I am 2/3 done.  

Hope you are all enjoying the sun!

Susan

Tina - I am on CMF which is a 6 month schedule.  My oncologist (or mad scientist depending on how you look at it) likes to have a weekly schedule, which means 24 total infusions!!!!!  I take Cytoxan orally daily, and get a weekly infusion of Methaytrexate and 5fu (which has a really long name).  It is supposed to have less side effects, and typically you do not lose your hair. 

That said, Gina has not found it to be that easy.  I have had minimal side effects, which I am thankful for but the 6 months is a drag.

I had an oncotype score of 23.  That with my age made my oncologist recommend chemo.

I go to Seattle Cancer Care Alliance.  I live on Bainbridge Island, so it is a ferry commute, but living here I am used to that!  I have not needed Neulesta, but I have a feeling my white count is up as I have more energy this week compared to the last couple.  My kids are 10 and almost 12. 

It's funny how different oncologists are.  I haven't had too many problems with the chemo side effects other than the usual stuff and of course having the digestion of an 80 year old!  The neulasta is probably harder although it seems like I can never just stay put and rest like I should so it always seems to catch up with me..

I am going to do my reconstruction at Providence, I have expanders in now and have done my infusion before starting chemo.  So hopefully there will be no problems with them when I start rads.

Hope you guys have a good weekend.  Looking forward to talking with you again soon.

Tina

Jeanbean - I was offered CMF or TC as well. TC x 4 (once every 3 weeks) or CMF for 26 weeks (my choice to go either weekly or 2weeks on/2 weeks off).  On the health front, my onco and I talked about outcomes/survivalbilty and he said that given my dx both regimes were virtually the same so that wasn't a factor. TC can be rougher (SE etc...) than CMF, which might be something to consider. On TC it is a virtual given that you will loose your hair; not soo for CMF.  You've met Susan and she's still got her's!! No jealousy here!!

In the end I opted for TC (it was the time factor that made my mind up). Turns out...the SEs of TC were managable...but the allergic reaction was the big no-no. So after two treatments of TC, I was switched to CMF. Oh well!

In the end...sometimes you don't actually get to make the decison...but i think my case was a bit unique. Either way, chemo is chemo. It is to make sure that the nasty stuff doesnt come back and that's why I am here. 

You will make the right decision for you! Best of luck on that (and getting your oncotype score..though if you've already made up your mind to have chemo, that should be less of an influencer as well). AND looking forward to meeting you in June! The date is defintely on my calendar...I wouldn't miss it!

Gina,

Thanks for sharing your experiences. The allergic reaction sounds awful! I admire your cheerfulness through it all and love the wig!!

yes, sometimes we don't get to decide and we realize the illusion of control we all have is just that, an illusion.

Jean

Thanks Debbie for your good thoughts.  I can't wait to put this behind me and get on with the business of living kind of normal again!

Tina

Tina in Seattle,

Do you know any wig shops in Seattle?  I will be getting chemo soon and must prepare!  I am new to the website.  Many thanks.

Hiya Madge24 - I echo Tina. I am glad you found us. I asked the exact same question about a month ago.

I am on the eastside and ended up at Wigs at Savvy Salon in Bellevue.  You need an appointment to try wigs on, but it is a pretty quiet little shop with a huge selection and the ladies in there are supper nice. 

Someone on this thread also recommended Hair Options  (7106 Greenwood Ave,  Seattle 98103 206-789-9447).

I was going to go "wig shopping" before I lost my hair, but I didn't have my act together (or I was stalling, not sure). In the end, I went when I was totally bald which I think helped get the right fit...but it was weird seeing myself with hair at that point.  Since the purchase of this "expensive" wig, I also have a free-bee from Amercian Cancer Society through Overlake Hospital (a new free wig, not a used one which is why I didn't bother even checking them out in the begining) and my pink one which I bought at a costume store in Seattle with my six year old daughter (I got her one too). I only wear the expensive one when I go on a "date" with my hub to a nice restaurant. Otherwise...it's just hats! I think if I had an office job things would be different.

Tina - I have not heard about  Crickett/Bonnie thing. I held off buying one on the internet because I thought I needed to try them on to figure out what would work best. I think that still holds true (the one I picked out in the shop didn't work at all and the lady helping me knew right off when she saw my face shape what would work and that's what I ended up with).

Good luck Madge. Oh, and I had my surgery at Overlake and getting chemo at Swedish in Seattle.

Madge,

I was told to not to go with human wigs as they are more difficult to maintanence.  But it depends on your preference.  I'm not that great at mananging my own hair so a human hair wig was not for me.  But you might have better skills than me so there you go.  Don't dread the treatments too much.  They can suck but you will get through it.  Just a part of the journey. When I really don't feel well, I just keep thinking that this won't go on forever and will end. 

Gina-buying wigs over the internet can be a challenge but Bonnie spends time on the phone with you and so on letting you know all that's involved, I had to measure my head.  The thing I will agree with about buying over the itnernet is picking the colors, the color swatches on the internet are good but you never know until you get the thing in your hand.  The one I have is a bit more red than it looked on the web site but it still works out well.  And you can always return it if you don't like it or it doesn't fit well.  It's just another option.  I remember being overwhelmed by the thought of having to buy a wig at all let alone pick one that would work.  And I only wear it to work the rest of the time I either go with a scarf, which I've been wearing to work more and more, Nordstroms has some great selections and the people there are very helpful with tying and colors etc.  A bit spendy but if your using them for work it's worth it..  The rest of the time I just go around bald until my head gets cold then I put on a beanie!

Hope everyone is doing well.  I'm home today feeling a bit achey, thinking since I'm in between my last and next teatment my neulasta must be kicking in to prevent the oh so fun drop in nutrafils.

Tina

Hey everybody,

thanks so much for sharing your experiences regarding choosing between T/C and CMF. If I need chemo, I'm leaning towards CMF as I'm concerned about the whole neuropathy issue (I rely on my sense of touch for my work). I had a perfectly lovely lunch with Susan the other day. Everybody's support has been so helpful. Big virtual hugs to everyone!

jean

Carol--thanks for sharing your experiences with me; it's encouraging to know you were able to continue working. Can I ask, did you see an oncologist in Poulsbo? I'm still hoping for a low score! 

Carol - I am also curious where you had radiation?  I am getting sick of ferry commuting to chemo and can't imagine 6 weeks of it for radiation will be fun....do you know if there is a radiation place in Poulsbo??????  I thought they were opening one up, but can't remember.

Jean - I am keeping my fingers crossed for your nice, low oncotype score too.

Susan