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CMF Question

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Comments

  • mandy1313
    mandy1313 Member Posts: 978
    edited April 2013

    And thinking of any of you gals who are from the Boston area and have family and/or friends who were running in the marathon--may G-d watch over them. 

    Hugs

    Mandy

  • Timbuktu
    Timbuktu Member Posts: 1,423
    edited April 2013

    I had a runny nose.

  • Robin3
    Robin3 Member Posts: 93
    edited April 2013

    Rita jean or if any of u are on fb. Pm me so we can be friends :)

    Robin :)

  • jsrose14
    jsrose14 Member Posts: 42
    edited April 2013

    Hi. So it looks like I may be joining this group. I had surgery in march and after going to three different oncs it I finally found one who was willing to give me there actual opinion rather than a bunch of numbers and statistics. I am brca2+ and had a hi ki 67 score grade 3 stage 1 tumor with no nodes. My oncotype score was a 16. The first two oncs said they didn't think the benefit outweighed the risks. Then at my 3rd consult today the onc said that their pathologist found lvi which my original post op final path report said no. Based on this and the fact that I am 40 years old she recommends that I do cmf. While I am relieved that someone was finally willing to give me a real opinion I'm scared but slowly coming to the realization that I will be starting this and soon too!



    Is there a place to find other women currently undergoing cmf treatment or is this it??



    Thanks!



    Jsrose

  • mandy1313
    mandy1313 Member Posts: 978
    edited April 2013

    Hi Jsrose!

    Welcome to the club that no one wants to join.  There are a number of women on the thread who are presently in treatment, and I am sure that you will hear from them soon. Still Ritajean and a number of "oldtimers" such as myself, will be glad to stop by to answer your questions and to help you along the path.  I had 8 tx every 3 weeks in 2008-2009. Although it was IV, I did not need a port and just had IV each time.  There are lots of other ways to give CMF--some involve pills, some are every 2 weeks--has  your onc told you what her preference would be?  I also had a low oncotype (14, I think) but I felt that I wanted to explore my options and I had two oncs agree that CMF was a good choice for me. 

    Stop by whenever you have a question and someone will surely be here to help you along the way.

    Hugs

    Mandy

  • traii
    traii Member Posts: 379
    edited April 2013

    Jsrose...glad third time lucky you found an onc that was willing to give you cmf and found more info for you.

    No this isnt a place Id want to meet all these terrific ladies but we are here and welcome.

    I just finished cmf in march 2013.

    Let me tell you this is very doable. I continued with work and raising a very lively 3year old :)



    Ask any questions here there is always someone popping in to help.



    Good luck and let us know your start date . We are here for you x

  • jsrose14
    jsrose14 Member Posts: 42
    edited April 2013

    Wow thanks so much for the quick responses. I need to let my onc know my decision by Monday and the I will start ASAP. I also need to decide where to do it? The appt today was at Sloan on NYC and I live about 1.5 hours away. I have family there I can stay with so I am considering doing it there but not sure. Also I have tissue expanders in. Are there any implications there? Can i still get fills?



    Thanks!



    Jsrose

  • jsrose14
    jsrose14 Member Posts: 42
    edited April 2013

    Mandy- my onc told me IV and it would be every 2 weeks for 8 weeks. I see you are in the northeast. I am too -- in pa.



    Traii- good to hear that your life went on thru tx. I have a 4 year old active boy and a 12 year old so I'd love to have a similar experience as you!



    Thanks again.



    Jsrose

  • mandy1313
    mandy1313 Member Posts: 978
    edited April 2013

    jsrose: I just sent you a private message.  You will see the "private message" section on the left of "discussion boards" and if you click on it, you will find mine. Cheers. Mandy

  • softness1
    softness1 Member Posts: 100
    edited April 2013

    Jsrose14. I'm presently doing CMF. Next Thursday I will be half way through. It is doable. I work, have a teen son & is taking 2 classes (online this semester) Just pace yourself. I'm on the once every 3 weeks IV. With me being stage 1, no nodes involved and a bilaterial i thought i was in the clearing but I had LVI as well it was why my onco really thought I should get additional insurance in beating the cancer. Plus my onco type is 25



  • softness1
    softness1 Member Posts: 100
    edited April 2013

    Congrats Traii!!!!! You did it!!!

  • MaryNY
    MaryNY Member Posts: 486
    edited April 2013

    jsrose: Sorry to see you have been through so much in just three months.

    I was treated at MSKCC and really liked that you get a team approach. Although I only met with one oncologist, she conferred a few times along the way with their tumor board, so I felt I was getting the best possible advice.

    If you do choose to be treated at MSKCC, I do see that they have an Outpatient Treatment Clinic in Basking Ridge, NJ. That might be easier for you to get to.

  • traii
    traii Member Posts: 379
    edited April 2013

    Thanks Softness....congrats on the half way mark hun x

  • Timbuktu
    Timbuktu Member Posts: 1,423
    edited April 2013

    Rose, I live in chicago and flew in to NY every 3 weeks to get cmf at Sloan.  As you know it's hard to figure out what to do but Sloan has an incredible social worker who helped us figure it out.  

    They treated me wonderfully and I definitely would have it done there.  We made a party of it as there is so much to do in NY.Cool  I kind of miss the trips.  But definitely talk to that social worker, wish I could remember her name.  She can help you think rationally when it seems impossible and shes very kind and caring.  Good luck!

  • jsrose14
    jsrose14 Member Posts: 42
    edited April 2013

    Thanks Timbuktu. How long did you stay in NYC after your treatment? What did you do back in Chicago if you had a fever any symptoms of infection. I am trying to figure out if its realistic for me to go in and out of NYC for treatment. I live about 1.25 hours from the city.



    Thnx!

    Jsrose

  • ritajean
    ritajean Member Posts: 4,042
    edited April 2013

    JsRose...Welcome to our thread where you will find lots of wonderful ladies who are currently doing CMF chemo or who have finished the program and are still hanging around to help others.

    I realize that Sloan is one of the "top-notch" facilities in our country.  However, once your oncologist decides on the type of CMF treatment that's right for you and the dosage, the actual treatment can be administered at almost any cancer center.  You can talk to your oncologist about this as it might be easier to have it administered closer to you especially since you have young ones that need you.  CMF is usually not bad enough to put you out of commission for days on end.  I found that IF I was going to have an "out-of-sorts" day after the treatment that it was almost always the third or fourth day.  Then I felt pretty good and was on "chemo holiday" until the next treatment.  I carried on with my life during treatments but did not push myself.  If you feel more confident with Sloan's reputation, then by all means go with them.  This has to be your decision and once you've made it, don't look back.  Look only forward.  Making these early decisions are the hardest part!  You will have more piece of mind once your decision is made, you're doing the treatments, and actually attacking the problem. 

    Hugs to you as you work through this scary time!  Take it one day at a time and time will take care of the rest!

    Rita

  • Robin3
    Robin3 Member Posts: 93
    edited April 2013

    Hi JRose,

    Welcome, sorry you had to be here but you will find a terrfic group of ladies who have helped all of us through this. I am currently on the CMF treatment. I had a port put in and I get it every 2 weeks for 16 weeks. I started in Feb. I have finished 5 treatments! 3 to go! #6 for me is next wednesday. I'd be happy to help you any way I can. My oncotype score was 19 and it spread to one node and being grade 3, my onc was insistent on chemo and cmf for me was the way to go. I'm 45 and active! I'm a zumba instructor and have been able to keep doing 2 classes a week during chemo! I get my chemo on wednesdays. And by friday and saturday I'm very tired, but then good to go after that. Once we got my meds straightened out, that's pretty much the main side effect. I did not lose my hair, no bald patches. I'm sure it's thinned, but i have a thick head of hair so no one can tell. I drink water through the chemo treatment. I actually drink a lot of water. I could not tolerate the nulestra shots to keep up your white blood cell count. So i get a series of nupogen shots. They stink, but my friend gives me my shots at home now so it's less to go to the dr. After this I do rads and then probably tamoxifen. Any questions, feel free to ask me. (Also I have a lot of gray hair and I still color my gray!!!) It really is a doable treatment. It's not a picnic, but do-able. Do what you have to girl! :-)

    Robin

  • Timbuktu
    Timbuktu Member Posts: 1,423
    edited April 2013

    Obviously an hour or so seems very close to me.

    I was misdiagnosed in Chicago and went to Sloan for a second opinion.  That's why I was there.  They discovered the micromet, and the lymph invasion.  So they are the one's who decided on CMF.  No one in chicago would do the CMF.  They don't really use CMF here.  

    I didn't want to go to someone who never did it.  At Sloan they do 15 people a day!  So we didn't know if we should move there for a couple of months or what to do.  The social worker explained that CMF is not incapacitating.  That I would be fine flying in and out.  American cancer society has donated seats so some of the flights were free.  The flights around Christmas weren't.

    We would fly in the night before and leave right away.  A couple of time I think we spent two nights there just for fun.  But I wanted to get home quickly so I could be sick at home.  I never had any problems.  Only went to my internist once, after a fall.  I was afraid of infection but I was fine.  

    If yuo have someone to help you drive you'll be ok.  You'll be ok either way!  I did try going once locally and they botched the job and I felt as though I was having a heart attack.  Had to get a holter moniter and stress test, but I was fine.  But after that experience my husband said "no way, we're going back to sloan".  They really do a great job.  

    Just hope it worked!

  • Timbuktu
    Timbuktu Member Posts: 1,423
    edited April 2013

    One more thing.  The dr told me that if i got a fever or another problem I could go to the er and have them call her and she would tell them what to do.  But nothing happened.

    I know its a little scary to have to travel but I'm really glad I did it.

    But that's just me.  Everyone has to decide on their own and that IS the hardest part!

  • jsrose14
    jsrose14 Member Posts: 42
    edited April 2013

    Thanks everyone. That's great info. I still need to figure out I my onc in pa will give me cmf. If not i will definitely figure out a way to get to Sloan.



    Timbuktu - can I ask which onc you used at Sloan? I saw dr Theodoulou and liked her very much. She seems to really value that I am 40 years old and we should take the lvi really seriously. She is a very compassionate person as well!



    Best-



    Jsrose

  • Timbuktu
    Timbuktu Member Posts: 1,423
    edited April 2013

    I saw Dr. Sklarin, head of clinical oncology.  

  • ritajean
    ritajean Member Posts: 4,042
    edited April 2013

    Good afternoon ladies!  The sun is shining in central Illinois and I'm ready to head out to work in my flower beds!  I hope everyone has a great day and that those of you in treatment are getting the same type of weather and can enjoy it.  Hugs to all of you!

  • Timbuktu
    Timbuktu Member Posts: 1,423
    edited April 2013

    Hope everything keeps coming up roses!Cool

  • socallisa
    socallisa Member Posts: 10,184
    edited April 2013

    Hi everyone..boy I lost track of this thread..good to see so many still on the boards..

    I am now a 12 plus years survivor after CMF..Cool from Southern California..Hugs

  • Dianarose
    Dianarose Member Posts: 1,951
    edited April 2013

    SoCalLisa- Hurray!!!!!!! Great inspiration for the rest of us.

  • Timbuktu
    Timbuktu Member Posts: 1,423
    edited April 2013

    yOU bET!  gREAT TO HEAR!

  • socallisa
    socallisa Member Posts: 10,184
    edited April 2013

    I have been keeping busy..love retirement

  • curveball
    curveball Member Posts: 1,583
    edited April 2013

    oooh SoCalLisa, do all those orchids grow outdoors at Balboa Park? They would need a heated greenhouse here.

  • ritajean
    ritajean Member Posts: 4,042
    edited April 2013

    Oh Lisa....gogeous pictures, as always. 
    Thanks for sharing them.  Don't forget us here. You bring lots of hope and inspiration to those just beginning their journeys!  We've missed you!

  • socallisa
    socallisa Member Posts: 10,184
    edited April 2013

    curve..no heated places, but an overhead protection against frosts we sometimes have in the winter..

    Rita..good to see you too

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