Crazy Sexy Cancer in Seattle

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  • katirob
    katirob Member Posts: 42
    edited August 2009

    Hi Tracy and everyone -

    Something made me jump on this board after not being here for 4 or 5 months - it must be because you all are planning a get together and I 'sensed' it :-).  We don't move back to AZ until Oct.  If I can I'd love to join you all.  I normally travel full time for work, but have been able to work at home much of the time this summer.  Not sure of my Sept schedule yet but I might get luck and be here one or all of those dates.  I'll keep checking back to see what you decide - sure hope I can be there.

    I had my mammo and all my follow-up appts about a month ago and got an all-clear - Woohoo!  Still have some breast edema from radiation but nothing too drastic (I had a lumpectomy).  I have respectable, if short, hair and have gotten a lot of complements on it.  Who knew?  My breast surgeon, who hadn't seen me since December said most of his older patients (thanks - I'm only 59!) look much better and younger with super-short hair.  I think he meant it as a complement!!

    Take care all - 

    Kati

  • cheers247
    cheers247 Member Posts: 270
    edited August 2009

    Hi Deb, I have not found anyone in WA who has IBC (Inflammatory Breast Cancer) There are others on this site, but I have not found anyone locally.  I am at Swedish too.  IBC is different, chemo comes first, then surgery, hopefully my surg will be in Oct.

    My chemo on Tuesday did not go as planned... I was admitted as scheduled, but I had 2 adverse reactions, it took 20hrs to get all the Taxol in, and another 2hrs to get the Herceptin in.  I spent over 36hrs in the hosp.  This was my second taxol, and I am having the worst pain that starts the day after chemo and lasts 3 to 4 days.  It's joint and muscle pain. Nothing seems to work on easing the pain.  I am going into my 5th month of chemo... One more to go~ I'm gona have repeat bone, MRI and PET scans at the end of Sept, I sure hope all this chemo has done the job!!!  Much love to all of you!

  • HeidiSue
    HeidiSue Member Posts: 43
    edited August 2009

    Deb - I was having unpleasant stomach feelings from the cytoxan and nothing seemed to help.  Finally, as a last attempt to deal with it, Dr. Rinn suggested adding a 2nd dose of Omeprazole in the afternoon and that pretty much took care of it.  Are you already on a proton pump inhibitor like Omeprazole or Protonix?  I don't know if it would help you or not, but it might be worth a try.  You could ask Dr Ellis about it.  

    Heidi

  • HeidiSue
    HeidiSue Member Posts: 43
    edited August 2009

    Jessica - Your post wasn't on when I sent mine a couple of minutes ago.  I'm sorry you had such a tough time with your chemo.  It sounds awful.  I have a friend who had Taxol and Herceptin and also had some bad reactions.  She's finally done with it all now and greatly relieved that's over.  I'm glad you only have one more left, although I'm sure it's hard to see it as "only one more" at this point.

    Take care

    Heidi

  • Madge24
    Madge24 Member Posts: 150
    edited August 2009

    Jessica -- So sorry you had such a rough time with the last tx!  Oh goodness.  Hang in there, you can do one more, although I know this one was so hard.  I found my 5th T/C to be the most difficult.  I'll keep my fingers crossed your next one goes much better.

    Take care of yourself!

    Peggy 

  • Madge24
    Madge24 Member Posts: 150
    edited August 2009

    Ladies,

    I had my last chemo.  Kind of anticlimactic.  No bells rang, no confetti fell from the ceiling, no balloons appeared, but I did get a nice big hug from the nurse!  I sort of feel like my body is mine again.  

    Hope everyone is doing well.

    Peg

  • atrishagreen
    atrishagreen Member Posts: 2
    edited August 2009

    I just started my chemo last month-have had my 2nd treatment.  This really is a major bummer.

    am bald but did find some cute hats-not going for a wig-sounds itchy

    am having episodeso of febrile neutropenia (lo neutrophils)  fever indicating an infection.  Was hospitalized for 3 days & t ER Thursday night.

     Has anyone else had this happen?  I'm not sure I can tolerate this chemo.

    Thanks for listening

  • TammyMarie
    TammyMarie Member Posts: 37
    edited August 2009

    Rovergirl,

    I joined this site today.  I have lived in the Seattle/Tacoma area for the past 16 years and love it.  Last Thursday, I was diagnosed with DCIS and IDC in the left breast. The pathology report from the initial biopsy shows one area at 4 mm and the other at 5 mm.  I don't think I can go through with a mastectomy and the doctor said that lumpectomy is not a good choice because I have two lesions in two different quadrants of the breast (and I am a B cup).  I am interested in participating in a clinical trial. I read an article the other day were they treated these type of cancers with chemotherapy and radiation. I am planning on obtaining my second opinion at Seattle Cancer Care Alliance.  Do you know if the patient even has a choice in the treatment plan?

  • HeidiSue
    HeidiSue Member Posts: 43
    edited August 2009

    Congratulations Peg!

    TammyMarie,  I have now had a lumpectomy/node dissection, radiation x 6 weeks and am in my 4th month of 6 month chemo. Every step of the way they have given me the pros and cons and then let me make the decision of what to do.  That's probably good in the end, but I did sometimes wish they would just tell me what to do.  I found the decision making the most anxiety provoking part of the process.  I'm at Swedish with Dr Rinn.   Good Luck!

    Heidi

  • Madge24
    Madge24 Member Posts: 150
    edited August 2009

    Tammy Marie, I also had 2 tumors in one breast in different areas and was an A/ B cup.  I had a mastectomy.  Honestly, it was the last thing I wanted to do but this is what they strongly recommended.  After it was over, I thought I'd be upset, but I was relieved.  I am also being treated at Swedish with Dr. Rinn.  There are others on this thread being treated at SCCA and they have been very happy with the level of care there, too, I think.  The decision making process -- as Heidi Sue and others have said -- is the most difficult part.  It will all get easier.  Getting the second opinion at SCCA is an excellent idea.

    Peggy

  • tkone
    tkone Member Posts: 511
    edited August 2009

    Hi TammyMarie,

    I'm glad you found us but am so sorry you have been diagnosed.  The beginning is very scary as there is so much information being thrown at you and so many decisions to be made.  My suggestion is to find an oncologist that you feel very comfortable with.  Go to as many as you need to find the right one for you.  You should always be able to participate in your own care.  If you have a doctor that tells you that you don't have any choices, get a new doctor. 

    As far as clinical trials go, when you find your oncologist, ask them what is available.  Generally they are very safe to participate in and highly monitored by doctors and the researchers.  Good luck with your decisions and let us know how we can help.  We are planning a get together in September and we hope you will be able to join us.

    Good luck.

    Tracy

  • PAP
    PAP Member Posts: 142
    edited August 2009

    TAMMYMARIE.....I definitely agree with the other gals about you needing to be free to make your own decision.  I had four different opinions before I decided where I wanted my treatment.  One thing to keep in mind is the location.  Someone recommended to me that just in case I needed to make more frequent trips than planned, I might want to be as close as possible.  I am really glad I made that decision even though I did not need to go more often than my scheduled chemo treatments.  Since you live in Tacoma, have you looked into the Cancer Care Treatment Center in Renton?  It is a beautiful facility and I almost went with them, but too far of a commute.   Patti

    http://www.cancercenter.com/seattle-clinic.cfm

  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2009

    Hello Seattle sisters - just checking in....school starts tomorrow.  I am waiting for my radiation schedule - I think I am starting next week.

    All in all, everything seems to be going well and I have enjoyed the last week of summer vacation.

    Hope you are all doing well!

    I am looking forward to our get together!

    Susan

  • libby
    libby Member Posts: 165
    edited September 2009

    After a quick check of all the posts, I couldn't see that we had settled on a date for our get together, but most people seemed to be available on Sept 16, and some not available on the other dates.  Is that what we want to set as the date? Or did I miss a decision somewhere?

  • dswope
    dswope Member Posts: 70
    edited September 2009

    Good morning all,

    I would love to be included in the "get together" if possible.  It would be great to see your faces in person!  Is this an evening event?  I work for the Seattle School Dist., and we're really gearing up for that first wonderful (?!!) day, but I think by the 16th we should have most of the kinks worked out.  Please let me know.

    I'm not quite ready for this cool weather yet!  A couple more months of summer would be nice.

    Hope you are all doing OK.

  • jeanbean
    jeanbean Member Posts: 61
    edited September 2009

    Hi all,

    I've been busy with summer camps and out of town visitors so haven't been on the site much. Welcome to all new folks; sorry you have been diagnosed but glad you are here among such wonderful support. 

    My mom is having a lumpectomy under local soon w/o SNB so should recover quickly. I'm on tamoxifen and feeling good. 

     Peggy--congratulations! I would have arranged a ticker-tape parade if I had been thinking! 

    TammyMarie--the decision making is the most difficult part and once you've made the decision you'll be so relieved. I had a cluster of tumors and my surgeon offered taking out just that quadrant but I decided on mastectomy since they would have to take out so much. I really agonized about the decision up until the surgery. In the end, they found a lot of DCIS in the rest of the breast so I'm glad I went with the mastectomy.  Good luck with everything and keep us posted.

    Is anyone going to the Survivor Celebration on the 20th (the cruise) ?

    Did we decide on the 16th for get-together?

    Jean

  • tkone
    tkone Member Posts: 511
    edited September 2009

    Hi All,

    I think September 16th was the best day for everyone.  Should we stick to the same plan that has worked so far and meet at Red Robin at Pier 55 in Seattle at 6:00?

    Jean what is the event on the 20th??

    Hope to see everyone there.  As usual, I will TRY to get there early and have a table under my name (Tracy)

  • libby
    libby Member Posts: 165
    edited September 2009

    Sounds good to me.  I'll put the info on the "Get Togethers" thread.

  • golfer779
    golfer779 Member Posts: 1,378
    edited September 2009

    Alrighteeeeee ... the 16th it is .... will put it on my calendar.

    So Tracy .... are we geared up for the 11th ???????   Hope to see you in the mass of walkers at Opening.   Did you get your tent site assignment (you are camping right) ????????  

    If anyone lives in the north end ... actually towards Edmonds/Lynwood/Everett the 3 Day walkers will be in your neck of the woods on 11 and 12 Sep.   Sunday the 13th the walkers will be back towards the Seattle area, with a Closing Ceremony at Memorial Stadium (Seattle Center) at 4:30.  If you've ever thought about walking/crewing/volunteering for this grand event, come check it out.   Questions .... fire them off and I'm sure that Tracy or I could answer them.  

  • tkone
    tkone Member Posts: 511
    edited September 2009

    Carol

    I think I am ready.  I checked the weather for the 11th and 12th and it currently says sunny and 78 for Friday and sunny and 75 for Saturday.  I am not tenting-I am staying in a hotel in Lynnwood.  I might have considered camping but my sister absolutely refused so a hotel it is for us.  All of the spectator cheering sections are available on the website so if anyone is interested, let us know and we will point you in the right direction.

    Carol, will you PM me your cell phone number so we can find each other at some point on the walk?

    Hope everyone is doing well.

    Tracy

  • jeanbean
    jeanbean Member Posts: 61
    edited September 2009

     This is from the Komenpugetsound.org site.Looks like fun! You have to register by Sept 10th and can do it online. Good luck at the 3 day and thank you for doing it!

    2009 Survivor Celebration
    Aboard MS Westerdam - Holland America Line

    Next Event

    Survivor Celebration Invite
  • HeidiSue
    HeidiSue Member Posts: 43
    edited September 2009

    Hi Everyone,

     I'm sorry I will be out of town on the 16th so will miss another opportunity to meet you all.  I went in for chemo yesterday with a fever and got diagnosed with pneumonia and my chemo cancelled.  Today I'm supposed to go in for more tests.  Rats.  I was feeling crappy but thought "this chemo is really catching up with me".   I feel like an idiot, especially since  I'm a doctor.  Denial is a powerful thing!

    Hope we can plan another get together later in thr fall

    Heidi 

  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2009

    HeidiSue - so sorry you are sick - pneumonia does not sound like fun.  Hope you don't have swine flu.  I am hoping to meet you in person one of these days!  I will start radiation soon, so maybe we can coordinate with one of you chemo sessions.  you should be done soon!

    I am looking forward to see those who can make it on the 16th.  Jean - the survivor cruise looks like fun but I can't make it as my parents will be in town that weekend.

    Have a great Labor Day weekend everyone!

    Susan

  • Tina-in-Seattle
    Tina-in-Seattle Member Posts: 100
    edited September 2009

    Hi everyone,

    it's been awhile since I've been by, I've been reading the updates.  Welcome to all the new visitors, and congrats on all who are done!  I'm finally done myself!  I never thought it would end!  Now it's just a matter of the next phase.  I have not been feeling all that great.  I think the beating has finally caught up with me plus Chemopause.  I've been to a couple of doctors for follow ups and they all seem to think it's the same thing, this is just not the same body anymore. 

    Has anyone else felt more lousy after finshing treatment than while going through treatment?  I'd be interested to hear your stories.  So much of this seems like it is menopause in addition to the toxins and getting nuked until your skin falls off.  I want to sleep but can't, I'm dizzy, and then get hot flashes along with nausea.  It pretty much sucks all the time.

    Unfortunatley I will not be able to attend the 16 and will miss yet another get together.  Uck!!!

    I hope everyone is doing well, you are all in my thoughts!

    xxo,

    Tina

  • HeidiSue
    HeidiSue Member Posts: 43
    edited September 2009

    Tina - I've still got 2-3 months more chemo but did my radiation first.  I sure feel wiped out.  It's such a long process and draining in so many different ways.  I am always amazed when I read other women's posts on here and see what they are going through with so few complaints.  I have a good friend who is a year out from her chemo now and says she is just starting to feel like she is getting   back to her old self.

    Susan - thanks for the nice sentiment.  I feel like I'm getting slowly better but my oncologist  called me today and has me scheduled for more tests because she feels these symptoms are "atypical".  I'd love to see you at Swedish sometime when you start coming for your rad tx.  Let me know when you get a regular schedule.

    Take care everyone.  Hope you've all managed to enjoy this long weekend inspite of the rain!

    Heidi 

  • Madge24
    Madge24 Member Posts: 150
    edited September 2009

    Heidi Sue -- So sorry you are having to deal with pneumonia!!  Oh gracious, take care of yourself and I send you big hugs.  As for your friend a year past it all, our onc. did tell me it takes a long time to recover from the tx.  Get well soon!  I will be thinking about you. 

    Tina -- good to hear from you again.  I am done w/ chemo (2 wks. ago) and still don't feel terrific but okay.  My DH took me and the kids on a 4 mi. hike and then I slept for 2 hours!  I've been amazed that people excercise through all this.  Anyway, I hope all your symptoms mellow out.  Go easy on yourself and be sure to get lots of rest!  

    Hope to be there on the 16th.  Take care everyone.

  • tkone
    tkone Member Posts: 511
    edited September 2009

    Hi All,

    I am happily ensconced in my hotel awaiting the 3 day walk starting tomorrow morning.  I went to the rehearsal for the opening ceremonies and thought of all of you while I was there.  I will walk for all of us tomorrow and keep each of you close in my thoughts.

    Take good care and thanks for being part of my inspiration.

    Tracy

  • cheers247
    cheers247 Member Posts: 270
    edited September 2009

    THANKS TRACY, YOU ARE AWESOME!!!  I hope to be able to do it next year!!

  • Tina-in-Seattle
    Tina-in-Seattle Member Posts: 100
    edited September 2009

    Go Tracy!!!  I hope to join you and Jessica next year!!  Thanks for carrying the torch for us!!

  • Tina-in-Seattle
    Tina-in-Seattle Member Posts: 100
    edited September 2009

    Hi everyone!

    Thanks Heidi and Madge for your encouragement.  Congrat Madge on finishing Chemo.  Heidi hang in there, it will be over soon.  I hope you are feeling better and on the mend.

    I am feeling better, I think my hormones as well as my body are just wacked out!  Hopefully all will be right soon and we can all look back at this someday and laugh.  Got my first hair trim since it has grown back, the cowlicks are still in control but I hope it will start to grow faster now that some of it has been cut. 

    Unfortunately I won't once again be able to make the 16th but I hope everyone who attends has a blast.  Hope to make the next one.

    Have a great weekend everyone.  There is going to be lovely weather!

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