June 2007 Chemo

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  • GracieM2007
    GracieM2007 Member Posts: 1,564
    edited October 2007

    Another lady on the Komen board, said her onc is one of the oncologists who helped 'discover' Herceptin, She is also one of the oncologists who put togehter the original study on Taxol that this article uses. She told a group of people at a meeting, that notes had gone out to all of the oncologists to put this article on hold, as there are things coming online that dispute it's so called findings.



    So, this can be SOOO dangerous to other women who MIGHT not get their treatment due to one article.



    That's why it makes me so mad. People don't THINK before they post things like jenny has done.



    Gracie

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  • TerryNY
    TerryNY Member Posts: 603
    edited October 2007

    That's why it is so important to talk things over with your own doctor and not make decisions based on someone's posting. 

    Each person has to be their own advocate in their health care, so research, research, research, is my motto.  

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  • gfy
    gfy Member Posts: 4
    edited October 2007
    Gracie, to make it short and to the point.... I have a brother who is a Doctor and works in these clinical studies and it;s  NOT just ONE "test" it's many!  And how it all works depends ont eh women.  More advanced cancers sure try anything.  But cancers as mine...it is just more toxins put into me for no reason.  Ye highest perscentive I get tfrom it to help me is raising the bar 2 %!  Totally NOT worth it in my case.  I just would like people to do research REASEARCH is the key..Taxol has not been in the main stream for to many years wo who's to say what the future holds or does not.  I am not in anyway at all telling anyone what to to.  I'm just sharing information same as you do.  HAVE NICE DAYLaughingMay God Bless
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  • GracieM2007
    GracieM2007 Member Posts: 1,564
    edited October 2007

    4jenny,



    It IS just one study and report. Go read the results for yourself. How it works, DEPENDS on the cancer, NOT on the women. There are women who have been HELPED by Taxol, and they had er+ and her2- cancers, so don't tell me it doesn't work. Just because you only have a 2percentage point of it helping you does NOT give anyone the right to try to influence ANYONE else to make their decision based on YOUR percentage points. I'm glad you have made your own decision and you have EVERY right to do so, based on the research you have done and what you and your onc decide. I know many women who have forgone chemo altogether, for the same reasons. But dont' come onto a site and tell women who are going through Taxol that it's not going to work. We have one woman on THIS very topic, who HAS had it work and she HAS the kind of cancer that YOU say it does not work on...so don't tell us it doesn't work.




    Gracie

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  • mikeysmom
    mikeysmom Member Posts: 137
    edited October 2007

    THANK YOU, GRACIE. WELL SAID.

    Cyndi

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  • burquie
    burquie Member Posts: 129
    edited October 2007

    If I can put my 2 cents in...... I agree with Cyndi WELL said Gracie. I thought it was a little......unnecessary for that to be even posted in this thread. Considering as Terry has all ready mentioned..... most of us are already done with our Taxol, and there are those who are right in the middle or ending their treatment. We made our decisions based on the information and guidance that our oncologists gave us, and there is no going back about it. We should not second guess our decisions, we KNOW we did the right thing!

    Bonnie

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  • gfy
    gfy Member Posts: 4
    edited October 2007

    GOOD FOR YOU!  AS I SAID EACH PERSON IS DIFFERNET....WHETHER YOU GO OFFENEDED OR NOT DOES NOT MATTER TO ME...I JUST HAVE A BROTHER WHO IS AN ONCLOLOGIST AND A SISTER WHO IS A SURGEON......SO I MAY OR MAY NOT KNOW AS MUCH AS YOU BECAUSE I DON'T "CHAT" ON THREADS...NOW I SEE WHY.  THAT'S WHAT I GET FOR TRYING TO BRING LIGHT TO A FEW PEOPLE (EVEN JUST ONE).  I'M DONE NOW TOO SO GRACIE GOOD LUCK AND YES MAY GOD BLESS! NOW GFY

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  • shrink
    shrink Member Posts: 936
    edited October 2007

    GFY!!!.  Ladies, we all have cancer and we're all upset.  Can't we just get along?  Jenny, I appreciate your trying to get some information out and that you are making your decisions based on research and the recommendations of your brother and sister.  You acknowledge that everyone's treatment might be different.  I think you were trying to bring the research to everyone's attention thinking that it might help someone.  However, had I read your post early on during my panicy phase, I might have tried to eliminate the Taxol part of a very long and frightening treatment plan.  This is what I think Gracie was pointing out.  As it turned out, Taxol was very effective in my case although I am ER+ and HER2-.  Anyway, I'm trying to stay as positive as I can given my Stage IIIb, nuc. grade 3 status and pissing contests of this sort drain my energy and hurt everyone.  God Bless you all!

    Shrink

    "All I want is a kind word, a warm bed and unlimited power."  Ashleigh Brilliant

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  • GracieM2007
    GracieM2007 Member Posts: 1,564
    edited October 2007

    Jenny, Just to let you know, I'm turning you over to the moderators.



    Gracie



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  • Moderators
    Moderators Member Posts: 25,912
    edited October 2007

    Hello All,

    New start, please.



    If you are interested in reading about Taxol, and it's potential side effects, you may want to read here:





    http://www.breastcancer.org/about_us/press_room/press_kit/taxane_chemo.jsp

    http://www.breastcancer.org/treatment/chemotherapy/side_effects/index.jsp

    http://www.breastcancer.org/treatment/chemotherapy/ask_expert/question_04.jsp



    Let us all please work together to respect each others choices.



    Many thanks,

    Melissa

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  • garnetann
    garnetann Member Posts: 158
    edited October 2007
    All this time I thought GFY meant "Good For You", kinda like "you go girl".  Maybe I need to crawl out of my hole a little more often and educate myself on the lingo. Embarassed Anyway, almost feeling normal today, last taxol was last thursday, still tired but the tingling is all but gone from my hands and just a little numbness in my feet. Ready to head in full force to radiation next week.  Take the bull by the horns and all.  Seeing a light at the end of the tunnel.  Might see some of you on the radiation boards.  So glad to have this leg of my journey behind me. 
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  • GracieM2007
    GracieM2007 Member Posts: 1,564
    edited October 2007

    Garnet Ann :) Yes, that particular shorthand isnt' a good thing.



    Am so glad to hear that your hands and feet are slowly getting better :) Hope radiation goes well for you.



    Blessings,



    Gracie



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  • GracieM2007
    GracieM2007 Member Posts: 1,564
    edited October 2007

    LOL, just realized my last post sounded like "martha" ...isn't a good thing, lol.



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  • lastminuteD
    lastminuteD Member Posts: 333
    edited October 2007

    Well, I'm glad I logged in AFTER the fact.  You go Gracie! 

    GFY indeed.

    Thank you mods Tami-Melissa!!

    Garnetann - let us know how rads goes next week!

    Today is Thursday - blood work day for tomorrow's #10 of 12 taxol/ herceptin!!  can't wait to be done with chemo - AND it's getting closer!!  woo hoo!!  :)

    Wishing everyone a wonderful weekend!

    Dawn

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  • burquie
    burquie Member Posts: 129
    edited October 2007

    So I went this morning for my 1st rad tx.......... computers were down, gotta LOVE that modern technology! They said I could try and come back this afternoon, or we'll start on Monday. We're starting Monday. I just didn't want to have to drive back out there today.... it's only like 20-25 minutes from the house, but jeese, with the price of gas and all I just couldn't see another trip today.

    Has anybody moved over to the rad boards yet???? If so, were are you? And just so you know I will always be reading and posting here with my Junies! (Did I spell that right? it looks funny!?)

    Hope everyone is feeling well. Gracie, glad you calmed down girl! But I had your back, count on that for all of you girls! Wink

    I'm feeling pretty good, my hair is really starting to come in; was mostly really light and grey looking, but you can see some of the darker brown startin to come on the sides.......sooooo exciting! Good thing too, it's starting to get chilly here in Western NY. Went out of the house yesterday forgetting my hat....... immediately turned around and went back in for it!

    Bonnie

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  • GracieM2007
    GracieM2007 Member Posts: 1,564
    edited October 2007

    DANG!!! I'm so jealous of hair, lol. Mine still hasn't shown up. 4 1/2 weeks past last taxol, I hope it comes in soon.



    Dawn, Wow, #10, you are ALMOST done, girlfriend :)



    Bonnie, lol, thanks :) Thanks for 'having my back' lol.



    Blessings,



    Gracie



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  • garnetann
    garnetann Member Posts: 158
    edited October 2007

    I want some hair too Yell  Still bald as a baby's bottom except for the few hairs that never left. My husband calls them "volunteer hair".  In the midwest where I live, you rotate corn and soybeans and you will see lone stalks of corn in a soybean field because of corn seeds left behind. They call that volunteer corn.  Way too much information, I must be bored...

    Oh, I plan on checking in here once in a while, but have also started posting on the October rads board. 

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  • GracieM2007
    GracieM2007 Member Posts: 1,564
    edited October 2007

    LOL...I have 'volunteer hair' too :)) Being in Kansas, I totally get that :))



    Gracie



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  • DebbieK
    DebbieK Member Posts: 116
    edited October 2007

    Hi All,

    I went in to get tatooed today and start rads next week.  Well they did tatoo me, but have to delay starting treatment because the dr. wants me to get my port out next week first.  I had really forgotten all about it!  It doesn't bother me and I wasn't worrying about getting it out.  So now I do that on Tuesday and start the rads on Monday, the 5th.

    My hair is coming in more and more, lots of gray but I don't care.  I just need it to fill in on the top and then I am going to shed my caps.  I may have to buy and non-cancer hat to wear outside, thought because my head will be cold.

    I have an appointment with a lymphodoema specialist next week so I can get a sleeve in case I need one and get some extra education on what not to do, etc.  I am looking forward to finding out as much as I can because I worry about it a lot.  My rad dr. said the risk goes up after rads.

    Oh, also my onc said I should have the genetic test since my mom has had breast cancer and my sister had ovarian cancer.  I am glad I will find out since I have sisters, a daughter and a granddaughter.

    Hope you are are feeling well tonight.  Take care,

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  • honeygirl
    honeygirl Member Posts: 1,718
    edited October 2007

    Hi ladies! I haven't been here for a while , I only had 4 A/C's and am now on tamoxifen. I am having "hourly" hot flashes!Surprised lol. I'm glad to see mostly all are done with chemo and moving on to rads or anti-hormone. I went for my 6 month mammogram and all is well! I don't have to go back for a year!Cool I go back to my onc nov. 28th. and if I'm still "flashing" he will give me some drugs. Well , can you say "spontanious combustion"!?! He better give me something...

    When I went to my bs for my mammo , I showed him I still have my port. And he was surprised , like me. He offered to take it out , but I told him I will request it be taken out when I see my onc.. If he still says "in case of reoccurance , then I will let the bs take it out. If I do have a reoccurance , what is the big deal of putting it back in?!

    And just for you all who are finishing up with chemo , I had my last chemo  Aug. 1st. And I am now , as of last Fri. the 19th , going scarfless!! I am sporting the GI Jane look , but it feels soooo good! And I never was one to have fast growing hair. So take heart , for all who are waiting , hopefully it won't be long until you start seeing some growth. Well , good luck to you all and hope to see you on the boards. Hugs and prayers to you all , MelodySmile

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  • b445
    b445 Member Posts: 1,325
    edited October 2007

    Bonnie I'll be thinking of you on the 6th. it's an easy date for to remember as it's my Bday.

    Terry, I think I can relate to the scars not healing.

    I had my first port taken out in Dec. A year after my first round of treatment. In May this year I had a new port put in. It never healed and they wound up taking it out and putting a new port on ther other side. They new port is healing well but the old site is again not healing and they are holding treatment to see if it will heal. So far it doesn't look good.

    Bonnie What thinners are you on? I take coumadin except before a surgery then I have to stop it and start Lovenox shots until the day before a surgery. Then surgery night start back up on the coumadin and keep taking the shots until the comadin levels are back up to par. Pain in the stomach!

    I did the shots for 6 months but told them when I got more clots and they told me I had to stay on thinners I wouldn't do the shots unless I had to

    So glad many of you are done or almost done with chemo. Mine will go on for some time to come.

    Rads are quick and easy they main thing is to keep the area moisterized and clean. They last couple weeks may get hard but it's doable and your strength will return.

    I've seen some of you wonder over to the Wagon Circle in Moving beyond. It's a great place for anyone that is dealing with the beast weather you are just begining treatment in the middle or continueing. I hope to see more of you there too!

    Hugs & Prayers

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  • Barbeqrn
    Barbeqrn Member Posts: 200
    edited October 2007

    Hi ali,

    I missed some major action on this site, I see! I had 6 Taxoteres and c's...is that the same as Taxol..I know it is in the same family...anyway, I finished the 6th Oct 11th. I am a nurse practitioner and saw a pt that was 5years out who didn't have chemo, just lumpectomy and rads and Arimedex. She continued to smoke and is about 300lbs, which I know are risk factors and now she has mets(presented with pneumonia and pleural effusion. ) I have totally been freaked out since, thinking maybe I should go back for the AC for 4 tx or have bilateral mastectomy( I had lumpectomy and saw they can do nipple sparing/skin sparing on some people for prophalactic tx). I am finally starting to calm down, I just don't want to go through this again. I would do anything now in order to be ok! Tha hair part was the worse....I lost about 80% so now I just look like a 90 yr old with very wispy hair...didn't know if I should try to crew cut it or just let nature do what it wants....



    What does hair look like coming in? I can't tell if I have any yet or not since I wasn't completely bald...When does it usually start coming in? I know everyone is different...I sure hope it happens soon.



    Hope everyone is doing well post chemo. It certainly was a very long summer. Is anyone taking any specific vitamins now to help prevent cancer? Thanks for any input!



    Barb

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  • Barbeqrn
    Barbeqrn Member Posts: 200
    edited October 2007

    I meant Hi All, not Ali! (my daughter's name is Ali!)



    Barb

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  • shrink
    shrink Member Posts: 936
    edited October 2007

    Hi Barb:

    My white, frizzy, soft, troll doll hair started coming in very slowly after my third AC.  It's now about 3/4 inch long.  I just noticed a few darker hairs yesterday.  I'm due for my last Taxol treatment on Nov. 8th and I'm done!  Hope you're doing well.

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  • DebbieK
    DebbieK Member Posts: 116
    edited October 2007

    Hi All,

    We are having a beautiful day here in the northwest.  The sun is out, and it is about 60 degrees, just perfect fall weather. 

    Barb, I finished chemo on September 10th, and I have gradually been getting some hair growth.  I would say my hair is between 1/4 and 1/2 inch now.  It is covering good on the sides and back but still not too well on the top.  I have to say the hair loss has been very depressing, and I really want it to hurry up and grow back.  I also worry about ever having to go through this again.  I had 4 AC and 4 Taxol treatments and am just starting rads.  My radiation doctor is pretty positive about my prognosis, but I wish I could be sure.  I think we all have to live with the fear and learn to deal with it.  People who haven't gone through it really cannot understand, but that's ok too.  Sometimes I am glad my family and friends can't really understand it so well.  I know you and and the other survivors out there share the knowledge of what it means to go through this.

    Hope everyone has a great week.

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  • mikeysmom
    mikeysmom Member Posts: 137
    edited October 2007

    I'm glad to still see posts here...I think I will be the last of the Junies to finish chemo. I feel kind of lonely. I just had my 3rd taxol and still have one more on Nov. 15. Taxol #3 hasn't been as bad as #2. That's the same situation I had with AC. I've got a lot of joint pain but don't have those really bad body aches that made me not want to go on last time.

    Shrink, I've got that soft white fuzz too but nothing with any color yet. How are you doing now? Are you going to have rads or surgery after chemo? I will have rads but probably won't start till the first of the year.

    Barb, isn't it easy to get freaked out by other women's recurrence? I had to stop reading on other boards because I just let my imagination run wild. I have had 4 AC, will have 4 taxols, had a lumpectomy, will have rads and a year of herceptin so there isn't much else I can do except a mastectcomy. I never want to go through this again...I'm not taking any vitamins right now but might after I'm done with chemo. My plan is to eat healthy, exercise 5 days a week, limit alcohol to special occasions and take whatever anti-hormone drug they put me on.  After that, it's in God's hands.

    DebbieK, thanks for the hair info. It seems like it's slow to come in on the top for a lot of women. I agree with you that I wouldn't want my friends and family to know what it's like. But it is so great to have everyone here that understands. Where in the NW are you? I have friends in Eugene, OR and we love it there.

    Hope everyone had a nice weekend!

    Cyndi

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  • shrink
    shrink Member Posts: 936
    edited October 2007

    Hi Mikeysmom:

    I have one more Taxol on Nov. 8th then surgery probably at the end of Nov or the beginning of Dec.  Then, radiation.  It's a long road but I've been feeling pretty good and the tumor is shrinking. 

    I went to a wedding tonight and my mother (age 91) danced a lot with her walker, then got dizzy and threw up.  Now I'm all worried that I'll catch something.

    Hope everyone had a fine weekend.

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  • b445
    b445 Member Posts: 1,325
    edited October 2007

    Cyndi, You are the last! I will be continueing with Chemo for a while longer. No end date was given for me.

    My hair is a little over 1/4" now it's so soft and fuzzy. My grandkids love to run their hands through it and my hubby snuggles it whenever he can.

    I've heard a lot of gals have curly hair when it comes back so far mine is straight.

    Since I've done rads before I'd be happy to answer any questions I can.

    Deb the NW was indeed beautiful this last weekend. But I hear the rains are coming again. I had frost Thurs & Friday. So was glad not to wake up to it again today. I don't like the cold much and always look forward to summer. I'm in the Seattle area.

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  • DebbieK
    DebbieK Member Posts: 116
    edited October 2007

    Cyndi, I live in Vancouver, WA, just across the river from Portland, OR.  I have lived in the NW all my life.  b445, I grew up in Renton and graduated from Renton High School, so I always think of that as home even though we have lived in Vancouver for 29 years now.

    Tomorrow I go in to get my port removed.  My breast surgeon put it in so she is taking it out.  Then I will start rads a week from today.  I am anxious to get started and get it behind me.

    My hair coming in is also straight.  I was looking forward to curls since I have always had straight hair.  Oh well, at this point I just want hair and lots of it!

    Take care,

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  • Barbeqrn
    Barbeqrn Member Posts: 200
    edited October 2007

    Debbie, let me know how the port removal is...for some reason I am nervous about that, maybe because I thought it hurt more than the lumpectomy going in...!



    I hated chemo more than anything so I feel for you that still have treatments. The only wierd thing, I felt "protected" with the chemo and now I feel "naked"...wierd!



    The hair thing really bothers me too, as I have to wear a wig for about 9 hrs and it is sooooo uncomfortable. Yuck.



    I asked Fitchik what supplements she takes, as she is an avid health/fitness trainer. She told me she take Biotin, Milk thisle, VitD,Calcium, B Complex, Mg, CoQ10, Vit c, fish oil, and Glucosamine. She says these have cancer fighting/preventative properties. The Biotin helps with HAIR, so I already have that one! I waited until 2 weeks after last chemo to take supplements.



    Hope everyone is well! Don't forget to stay away from anyone with potential flu symptoms if you have low WBC's!!!!!!!! I don't want anyone sick!!!!!! Barb

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