Crazy Sexy Cancer in Seattle

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  • PAP
    PAP Member Posts: 142
    edited September 2009

    MADGE24....At five weeks post chemo (TC) I have a lot of peach fuzz.  I think the hair might start to come in soon.  I'm keeping my fingers crossed.  What kind of chemo did you have and how is your hair (or lack of) doing?  Patti

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  • tkone
    tkone Member Posts: 511
    edited September 2009

    Hey ladies-need your help with some prayers.  My friend Michael is going in for surgery tomorrow for the 3rd time for oral cancer.  I have a special affinity for him because he was originally diagnosed just before I was and we have kind of been in the fight together.  This will be the third mass he is having removed.  He is a great guy with a great wife and twin 12 year olds.  He has a whole church full of people praying for him, but I know a few more won't hurt! 

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  • sam1991
    sam1991 Member Posts: 331
    edited September 2009

    Tracy...every litle bit helps. My prayers are with Michael, his family and you as his frioend.

    xxoo Kathie 

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  • cheers247
    cheers247 Member Posts: 270
    edited September 2009

    Tracy, my prayers are with Michael too!  and you!

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  • tkone
    tkone Member Posts: 511
    edited September 2009

    Thanks for the prayers.  Michael is home and resting and awaiting the results.  Also, went for my 1 year post treatment mammogram today and it came back all clean and clear!  Yippee!!!

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

    Hey ladies!

    Tracy great news!  Way to go!  Praying that Michael's results are great as well.

    Yes Jean, I wish docs would just write in plain english.  AKA, Tina we know you are a paranoid lunatic so don't worry!  LOL!

    Patti you will probably see the fuzz for a bit longer, then notice the sides will begin to get thicker than the top.  It seems like the sides fill in before the top then all of sudden it all begins to fill in.  I am 16 weeks out of chemo and I just had my first trim but the cowlicks still rule.  I notice it is softer than it was before it fell out and more wavy.  It's like suprise hair.  I hear that it changes again after it grows for awhile.  Who knows? 

    There is going to be a BC event on Sunday in Everett at Legion Park if any one is interested, I will post the info as soon as I get the details.

    Hope you all continue to do as awesome as always!

    xxo

    T

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

    Tracey, my prayers are with Micheal too.  Congrats on your 1 year post treatment clear mammogram!

    Jessica - you will be in my thoughts and prayers with your upcoming scans and surgeries.  

    Jean - your mom is amazing!!!!!  Making sorbet right after surgery.  

    I now have lost track of who posted what.....hmmmm maybe chemo brain????

    Gina - your hair looks great!!!!!!  Patti and Peg - yours will be there before you know it.

    So far, rads are going fine (I guess?).  No complaints.

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

    That happens to me all the time April.  I have to keep going back to refer to who said what etc, etc.

    What round of rads are you on?  keep on greasing especially at night.  There is a product called My Girls Radiation Cream that is made of natural stuff and is really great.  I used it during the day because the Aquafor was too heavy especially in the heat but this stuff was great.  It help cool down my skin when I started turning red as well.  You can google it to find the web site.  How many are you having to do in all?

    It will go quickly the pain is that you have to go everyday.  Let me know if I can help in any way.

    Tina

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  • Madge24
    Madge24 Member Posts: 150
    edited September 2009

    Jean -- I'm glad the surgery went well for your mother!  Have been thinking of her.  Thank you so much for the offer of food, but we're percolating along fine.  I'm happy to have the energy to cook again and bustle about the kitchen, full of purpose!

    Jessica -- I hope your PET CT results came back today so you can move on to the next step!  It's so hard to wait for test results.  Good luck next week with pre-ops with BS and gyn oncologist.

    Tina in Seattle -- I love your attitude!

    Gina -- I do have pics but don't know how to post them on this!  Help!  Is it easy to do?  Love the new photo!!

    My rads are going fine.  The staff is so nice.  I use a European (i think) cream the onc. recommended.  I got it at Whole foods, had never been there -- what a great place, wanted to buy everything.

    I took off my wig today and my radiation people did not recognize me.  At least they didn't scream when they caught sight of me!  Because I sort of look like a little old man when I don't have the rug on.  It's fun to see hair coming in, thank goodness.

    Take care everyone.

    Peg

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  • Madge24
    Madge24 Member Posts: 150
    edited September 2009

    Tracy -- Congratulations on your clear scans!!!  Thank goodness!!  I will keep Michael in my prayers.  Tell him we are pulling for him.

    I just had a regular dental appt. today and the hygenist said make SURE everyone you care about is checked at their regular check-up for oral cancer -- it's when they sort of "tie" your tongue, move it from side to side to look under there; and then also depress the tongue and make you say "ahhh" and look down the back of your throat.  Be sure your dentist is doing this or ask that they do it.  She told me it's highly curable if you get checked regularly.  Not all dentists check and sometimes the hygienist forgets.

    Peg

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

    Tracy congrats on the scans.  Hope Michael is doing well, he is in my thoughts.

    Peg you're right have your dentist check your tongue, pallet and inside of your cheeks.

    Hope everyone has been enjoying the fine weather.  If anyone is going to be in Everett tomorrow it's the ACS Making Strides for Breast Cancer.  I'm walking and working one of the booths.  Come by and say hi.  Here is my team page link.

    http://main.acsevents.org/site/TR/MakingStridesAgainstBreastCancer/MSABCFY10GreatWest?pg=team&fr_id=19862&team_id=530474

    I'll be thinking about all of you.

    xxo......Tina

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  • cheers247
    cheers247 Member Posts: 270
    edited September 2009

    Tracy, I'm so happy your scans are clear!!  Congrats!

    Peggy, I'm glad your rads are going fine so far!, I'm just a couple months behind you.

    My MRI's showed that my tumor is still there, but a bit smaller, and my lymph nodes still look suspicious.  The PET scan showed that the blood vessels are still "feeding" the tumor, and the nodes are still suspicious.  So overall, and "incomplete response" to chemo.  Not what my Onc and surgeons want, but after 5 months and 5 different chemo's + Herceptin, that's what it is.  Soooo my pre-ops are next week.  I'm having a bilat & total hyst.  I'm pretty sure that with these scan results I'll have a full axillary node disection.  I'll keep you all posted.  Thanks so much for the support and prayers!!!  Jessica

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

    Jessica,

    sorry to hear that your treatment is considered incomplete.  But you'll get through this, the bilat is not as bad as it sounds.  I did mine in February and did not have much down time.  I am sceduled for my ovaries to be removed on Oct 12 it might turn out to be a total hyst. not sure.  But whatever you and I will be fine.  Just keep smacking the sh*t out of this pain in the ass!  I'm walking the steps with you.  Let me know if you need anything after your surgery, I'm in Snohomish Cty but I would be happy to help out with anything you may need even if it's just chatting on the phone.

    xxo

    Tina

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

    Peg glad you ditched the wig, rock that bald look girl!  It might me a bit rough now as the weather is getting cooler I did bald most of the summer but was always worried that I would get sunburned, lol, like the old guys on a golf course.  ;-). 

    Whole foods is awesome just have to resist the urge to buy everything.  I love that place. 

    Glad rads are going well, just keep greasing and if you don't have to loose the bra too for awhile.

    xxo.......Tina

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

    Seattle sisters -

    Jessica - you have a great aproach to this, but it would be hard to not be PIS$ED off that 5 hard months of chemo did not 100% work.  But, it did work some, so that is something.  Your surgery is going to get rid of this once and for all.  If you need anything - please let us know! 

    Tina - I have done 10 out of 25 rad treatments.  I have 5  weeks total.  So far it has been fine, but my skin is itchy and slightly pink.  They gave me a presciption cream/ointment to use at night or twice a day - I will be starting to use it 2 x a day.

    Everyone - Safeway is starting there Breast Cancer awareness month early - I was asked if I wanted to donate to breast cancer (which obviously is a GREAT cause) and I told the cashier I have donated PLENTY to breast cancer this year.  

    Everyone - have a great week!

    S

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  • Madge24
    Madge24 Member Posts: 150
    edited September 2009

    Jessica -- Keep up the good fight, sister!  I think your surgery will go well and you will recover more quickly than you think.  But, baby yourself.  You will get through this and there will be a light at the end of the tunnel!  It sounds like you have an awesome team of doctors.  I really like Dr. Beatty.  Take care and let me know if I can bring you anything while you're in the hospital -- w/ rads, I'm there every day and would be happy to do something for you.  If you feel too crummy to see anyone, I can just drop off treats, food, anything.  I know I sure didn't want a parade through my room when I was there, that's for sure.

    Take care all.

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  • jeanbean
    jeanbean Member Posts: 61
    edited September 2009

    Jessica--I really admire your calm and philosophical attitude; it's what you need to make it through all this. You WILL kick cancer's butt and we are all praying for you. Please, please let us know if any of us can do anything--food, videos, whatever.

    Tracy--congrats on the clear mammogram! I have to admit, some days it is all I think about so now I can think "Tracy's was clear and so will mine be". I am keeping Michael in my prayers too.

    Peg and Susan--glad rads are going OK. Let me know if you have time for coffee.

    Tina--you will be in our thoughts on the 12th and we'll be hoping for a speedy recovery.

     My mom has her post-op appt with Dr. Anderson tomorrow--keep your fingers crossed for clear margins!

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  • cheers247
    cheers247 Member Posts: 270
    edited October 2009

    Jeanbean, I'm praying for clean margins at your mom's apt!

    Peg, I'll be going home within 24hrs of surgery, I'll let you know if I'm there longer... taking my laptop with me, just in case I'm feeling up to getting online. 

    Thank you all so much for your support!!  The Da Vinci robot is going to "assist" with my hysterectomy, which they say reduces the recovery time.  I'm not looking forward to the chest drains, but it's a small price to pay for being NED!! (hopefully!)

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  • tkone
    tkone Member Posts: 511
    edited October 2009

    All,

    I went to Las Vegas this past weekend with the 1st Ta Ta Sisterhood Reunion in Vegas group from these boards.  It was so great to meet even more wonderful survivors.  We had so much fun and there were a total of 22 of us there.  We are going to do it again next year so hopefully some of you can join as well.

    I hope all are doing well.  I find I have some decisions to make about surgeries.  My gynecologist has recommended that I take my ovaries and tubes out.  I also need to make a decision about finishing my left side with nipple and areola.  I really would like to be done with surgeries, but it appears I'm not quite there yet.

    Also, I know I have mentioned on these boards about my friend Michael.  His third surgery found additional oral cancer and they have determined that chemo alone is not an option for him and since he already had radiation he can't do that again.  It is so incredibly difficult to watch this happen to such a great guy.  He is my "partner in crime" with this cancer journey as we were diagnosed within a couple of months of each other.  I continue to pray for him. 

    Hope all have a good day.

    Tracy  

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  • cheers247
    cheers247 Member Posts: 270
    edited October 2009

    Tracy, I continue to keep Michael in my prayers!! 

    I so glad you got to go to Vegas!  Hopefully I can go next year, it sounds so fun!

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

    Tracy - Peg and I were just talking yesterday and wondering about Micheal.  I'm so sorry that they found an additional tumor - I hope his doctors have something strong up there sleeve as he can't do radiation.  I am interest in hearing about your ovary decision - are you on tamoxifen?  I will keep Micheal in my prayers too.

    The Vegas trip sounds like it was fun - I didn't sign up as I am still in "treatment" and wasn't sure how I would be feeling.  Next year it would be wonderful if we could all do it.  Carol is on a BC retreat to the San Juans today - I was ineligible as I am still in treatment.....BUMMER!  Next year for that one too.

    I got a call today from an island mom - one of my bunco friends.  Yep - joining our exclusive, expensive club.  IDC er/pr+ her2-, grade 3 is all she knows right now.  She is meeting with a surgeon at Swedish today.  I have told her about this thread and you will all most likely "meet" her here soon.  She is 38.  I am so happy to be here for her as Carol was for me in the beginning - and this thread was as soon as I found it - but it SUCKS to add another woman to this.  It just really sucks (can I say that on here?!!!!).

    I did tell her what a great, fun and inspiring group you all are!  Hope you all have a good weekend!

    Susan

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

    Hi Ladies,

    hope all is well.  Tracy hope you had a blast in Vegas, sounds like you did.  I continue to pray for Michael and that they can treat him effectively. 

    Susan so sorry to hear about your friend.  Have her hook up as soon as she can as we all know this is the hardest part.  She can come over here and go nuts with us!

    Scheduled for surgery on Oct 12 Tracy to have my tubes and ovaries removed.  Doing it so I can avoid tomixifin.  I'd like to finish my reconstruction as well before year end so I don't have to drag it into next year but I don't think that's going to happen.  I don't think my body can handle 4 surgeries in one year.

    Seems like all we do lately is either go for treatment, follow up treatment or appointments or surgeries!  Someday it will be over!

    Have a good weekend everyone!

    xxo

    Tina

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  • anniebford
    anniebford Member Posts: 128
    edited October 2009

    Hi Tracy,

    I had my tubes and ovaries removed about 2 weeks ago. I had been getting Lupron shots every 3 mos to keep them suppressed after chemo. I am not on an aromatase inhibitor. I am glad I did it. I was done using them and the Lupron shots were a pain in the butt (literally). The surgery was laprascopic- 3 small incisions on the abdomen. The ovaries and tubes were actually taken out through my belly button. I did not rest much in the days after surgery (too much I had to do)and so was tender for about 10 days after. They prescribed pain meds but I only needed to take it twice. Motrin was fine after that. The tenderness just stopped a couple days ago. I  went for my followup yesterday and had the stitches that were still in place clipped. It is a surgery and the usual risks of anethesia are there but overall, it was easy. Having er/pr + bc made me want to lower the hormones my body is making in a more permanent way. Plus, ovarian cancer is a nasty bastard and with my history why keep em?

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

    Annie, Tracy and Tina (and anyone else with ovaries removed and not BRAC +), as I finish radiation I will see my onc. 4 weeks later.  We will then have the homone suppression conversation which is why this is interesting to me.  I am in chemopause.  I have taken the blood test to check if I metabolize tamox. I know my onc. would rather have me on an A/I.  Now, she mentioned that if I had Lupron shots I would still need to take an A/I - my onc. is thinking I am completely in menopause and plans on doing some blood tests to confirm this.

    Maybe she will recommend that I have my ovaries out too, but when I had mentioned this she kind of dismissed it telling me that I will be in menopause.   This was last spring -when I was having chemo so we really did not discuss it at length (at the time we were just trying to get thru the chemo!).  

    I love having you all here to check what other oncologists are doing (I do really like mine, but still it is nice to have others perspectives!).

    Annie - I completely agree about ovarian cancer - very nasty and hard to screen for it. 

    This has given me LOTS to talk to my oncl. about!  

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  • tkone
    tkone Member Posts: 511
    edited October 2009

    All

    Wow, lots of discussion on the ovaries!  I am on Tamoxifen and have been for a year.  I don't have any particular problems with Tamoxifen besides hot flashes/night sweats and am starting to have some leg cramp issues.  I'm not particularly concerned about the actual surgery as it sounds like it is pretty easy especially done laproscopically (is that a word??)  More what I am worried about is giving up the devil I know (Tamoxifen) for the devil I don't (Femara or some other A/I).  I know that clinical research shows that people who are on Femara for any amount of time do better than the people who are on Tamoxifen exclusively for 5 years.  I know all of that, but what if I have 4 years of being miserable on Femara?

    Susan-gosh, I can't believe we are still adding people to our growing club.  I think you are right...Cancer SUCKS!  Please tell her we are here for her if she needs us and to hang in there. 

    So, I know we all just got together, but I am a planner (can't help myself) so was thinking maybe we plan a get together around December and maybe do an ornament exchange or something??  Or maybe just get together for some holiday cheer?  Maybe sometime the week of December 14th before it gets too crazy for everyone?  I am pretty open that week and could do any week night.

    Let me know what works for everyone and we will see if we can something that works for everyone.

    Tracy

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

    Tracy - selfishly (as I missed the sept. gathering) i would like to get together sooner - like mid November.  I love the idea of an ornament exchange.  I am up for either month! 

    I agree that the ovary surgery sounds like it is a fairly easy surgery - since now we are all veterans of surgeries!

    Anyway, count me in for either Nov. or Dec.  December 17th (Thurs) is a school concert for Peg and myself.  

     Hey - the sun is out!!!!  Have a great weekend!

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  • Madge24
    Madge24 Member Posts: 150
    edited October 2009

    Hey all, 

    Interesting discussions on ovaries. A friend of mine had hers out by laproscopy and it went just as anniebford said.  In other words, pretty darn well for a surgery.  She'd had breast cancer, it runs in the family.  Her doc said it was a no brainer for her to have them out.

    As for getting together, I prefer Nov. b/c Dec. gets so busy.  Although now that i'm in the city every day, i'm going to get a headstart on Christmas shopping!  But I'll try to come either month you plan it.  Thanks Tracy!

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  • sam1991
    sam1991 Member Posts: 331
    edited October 2009

    Hi all,,

    BRACA+ with laproscopic removal of ovaries and tubes. On prempo but will be tapering off next month. No surgical menopause thankfully.

    Madge....hope all is going well and your spirits match your beauty. I agree, November probably the best time for dinner.

    Tracy...you must have had a Vegas blast. Oh what fun!!!! Still holding tight to Michael.

    Best wishes to all!!!

    xxoo Kathie 

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  • cheers247
    cheers247 Member Posts: 270
    edited October 2009

    Hello ladies!  So I'm having surgery on Wed. 10/7 (bilat + ALND on the right + total hyst)  I will be taking Aromasin, eventhough I'll have no ovaries too.  Is that weird, it seems like many of you are having the ovaries removed in order to avoid tamox and AI's.  I hope to be healed enough to come to the get together!  xoxo, Jessica

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  • tkone
    tkone Member Posts: 511
    edited October 2009

    Hi Jessica,

    Just a clarification.  If I have my ovaries out, I will be taking some type of Aromatase Inhibitor, I just dont' know what I would be taking.  Tamoxifen is for pre-menopausal women in general, which I was prior to my diagnosis.  Good luck with the surgery.  I have not yet made my decision.  I think I am stalling Surprised

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