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Chemotherapy for Stage IV

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  • Unknown
    edited January 2011
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    I am not sure what you are asking, but dont worry about it until the problem happens.  We can't live in fear of what might happen.  It is wonderful that your mother responded to treatment and is stable.  Since she is Her2+ is she doing herceptin? 

  • sahilkhan
    sahilkhan Member Posts: 5
    edited January 2011
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    no sis she has completed her chemotheraspy with abraxne and gemcitabine because she got pleural effusion on her right lung ....her fuild was taken out by inserting a needle on her chest by oncologist and till 6 months she was nerved on chemotherapy knw hse got much side effects like hairloss as common, vomiting and naushea also anxiety ... but she is afraid that if again that pleural effusion comes what will happened.... is it sure that it comes again in her lung.... her report is ER+/PR+ AND HER2+ u have ny idea

  • sahilkhan
    sahilkhan Member Posts: 5
    edited January 2011
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    no sis she has completed her chemotherapy with abraxne and gemcitabine because she got pleural effusion on her right lung because she is a metastatic breast cancer patient since 5 years. from 2005 this is the second time she is nerved in chemo  ....her fuild was taken out by inserting a needle on her chest by oncologist and till 6 months she was nerved on chemotherapy knw hse got much side effects like hairloss as common, vomiting and naushea also anxiety ... but she is afraid that if again that pleural effusion comes what will happened.... is it sure that it comes again in her lung.... her report is ER+/PR+ AND HER2+ u have ny idea

  • pq2
    pq2 Member Posts: 66
    edited January 2011
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    Not exactly chemo questions but....I am Stage IV with early mets in 3 thoracic vertebrae now doing chemo (taxol and zometa) to shrink tumors then surgery, just one month into treatment with at least 3 -5 more cycles of chemo to go. Doc keeps talking about lumpectomy and I'm trying to research benefits of full mastectomy in order to have a better discussion with her when we move to surgery (not for a few months yet). Thoughts on where to get info on Stage IV surgery options? Haven't found a lot out there. Any experiences?

  • Unknown
    edited January 2011
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    I had what they called a modified radical mastectomy because the surgeon I consulted with at the time (general, not breast) said he thought it would be a more sure thing that I would not have recurrent cancer than with a lumpectomy....he said if I was his daughter he would recommend a mastectomy.  BUT I developed mets  anyway and later they said research showed that the success was just as good with a lumpectomy as mastectomy so who knows.  Sorry not be more helpful, but I can't really say which is the best route for you to take.  I am sure you will get some feedback from others on here.  I will say that if I had to do it over again I would have both breasts removed just for the symmetry...this is not a vanity issue, but buying a bra that fits is not an easy task. 

  • sahilkhan
    sahilkhan Member Posts: 5
    edited January 2011
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    check this link it is verymuch useful for breastcancer patients

    http://www.oneminutecureforalldiseases.com/clickbankpitchpage.htm?hop=selfseo

  • pq2
    pq2 Member Posts: 66
    edited January 2011
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    thank you! and I did wonder about the bra issue. This is plenty helpful..

  • keepingon
    keepingon Member Posts: 7
    edited January 2011
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    I have my last chemo treatment on Jan. 20th and then I will look at surgery. How long do I have to wait from the time I finish chemo to the time they will do a lumpectomy?

    My doctors have been extremely proactive due to my young age and I haven't had to wait longer than a day or two for any test or procedure to be performed.

     Anyone been through this? Done some chemo before surgery, specifically a lumpectomy?

    Thanks in advance.

  • pq2
    pq2 Member Posts: 66
    edited January 2011
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    this is the protocol I am on, and good on you to be almost finished with chemo! my docs, both onc and surgeon, have said surgery will come within 4 weeks of last chemo. i researched this protocol up and down because I thought I wanted surgery first but it really makes the most sense for Stage IV. shrinks everything down. bless you for the good fight.

  • beksam16
    beksam16 Member Posts: 1
    edited January 2011
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    I have stageIV cancer,mets to the lungs confirmed on december 31st,started Xeloda+Tykerb.After 2weeks of rush,diarrhea,I developped Gastro-enteritis.Was told to stop meds for now but the abdominal pain is so unbearable every time I eat anything(even a piece of bread) I don`t know what will happen after 1 week off of the meds

    Anybody had the same side effect? 

  • Unknown
    edited January 2011
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    I did have some stomach pain and developed acid reflux after I started chemo and was doing protonics for a long time and am now on nexium.  Ask your onco is there is something you can take for the pain....maybe even malox would help. 

  • 33skidoo
    33skidoo Member Posts: 42
    edited January 2011
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    I'm about out of hormonal treatment options.  Dr. Emens was talking about putting me on xeloda.  But I've never done a lick of chemo, so I don't think my insurance will pay for it.  I'm having a tough time getting my head around how chemos are chosen.  I sure wish they knew more about which protocols are most effective for particuloar sub-types of breast cancer?  Does anyone here know if onoe chemo is more effective than another for certain tumor characteristics?  I'm ER+, but PR-, and my Her2 "looks" high, but really isn't because of something called "polysomy 17".  I REALLY REALLY REALLY want to know more about this subject before I start down the chemo path. 

    Can anyone educate me on this subject or direct me to a good site for this information?

     TIA

  • jenny13
    jenny13 Member Posts: 3
    edited January 2011
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    Pink3020, I had to read who posted this because I thought it may be my sister, we have very similar stories. Please forgive me if I get terms wrong I am still learning, July 08 My mom was diagnosed with breast cancer stage 3c, triple negative, "a very aggressive tumor", she did chemo, radiation and mastectomy. 1 1/2 years after last treatment, Oct 2010 she developed a cough that wouldn't go away. Biopsy of lymph node was positive for cancer. Today we got the results of her bone scan and PET. She is stage 4 with cancer in the mediastinum and in the lymph nodes. Doctor is assuming that it has spread to other places that we can't see on the PET. She is starting chemo next week and we are trying to decide between  the chemo he recomends and a "more aggressive" chemo. She is a fighter and wants "everything he has" I do not want to know statistics about how long she has, I refuse to read that but I want real advice from real women going through this. What do we ask? What do we try? What can I do to help? I am hoping to get her on this board when it sinks in a little more. I have found great comfort reading all your stories. By the way since her diagnosis she has seen 3 more grandchildren born (including twins) Smile
  • Unknown
    edited January 2011
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    Jenny

    .....Is the onco recommending the more aggresive or is that what your mother wants.  I have done several chemos....4 to be exact and one thing I have found is that we all react differently...what works for one may not work for another....what one cannot tolerate, someone else may not even get bad side effects with.  However it sounds like your mother has a lot of reasons to want to live...a daughter who cares enough about her to do research and three grandchildren.  You can help by just being there for her, you can ask if there is perhaps someone you can talk to who was on the treatment he recommends, you can ask what will be the next step if this chemo does not work....you can ask what are the possible side effects.  The onco can tell you to the best of his knowledge what he thinks will work, what he thinks SEs may be, but even the doctors don't know for sure.  I am on a chemo now that I have not have any real side effects with at all and there was a whole list they gave me....so you just never know.  As far as statistics go, those are not always accurate either....I have had metastatic breast cancer and have been Stage lV for 13 years now and actually am doing quite well.  Once you find out the recommended treatment, come back and ask about it.  And 33skido, this post sort of answers your question also....I don't know what chemos are most effective.  I had wonderful results with the hormonal/ aromotase inhibitors and one chemo really worked for me and the others have not done much at all.  Also I would check out your insurance....unless there is a specific clause that says Does not cover chemo, I would think it would have to cover at least some of it.....chemo is only prescribed if it is medically necessary so I don't think the insurance could just not pay it, but I don't know that much about ins myself so don't go by what I say.....however, do inquire with the ins company if this is a concern....if it isn't covered your onco's office should be able to point you in the right direction to find a way to get assistance with paying for the chemo.  I always said I will NEVER do chemo.....it's no picnic, but when you consider the alternative, it's not so bad.  Xeloda was one I actually wanted to try since I know some women on it and also the onco I saw at MDAnderson suggested it next, but my onco wanted me to do Gemzar so that is what I am on now.  The taxol family is a pretty rough group, but from my experience and having known others who did that group, they do seem to get results...taxol, taxotere. and abraxane are all in that family. 

  • jenny13
    jenny13 Member Posts: 3
    edited January 2011
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    Marybe,

    thank you so much! This is exactly what I'd hoped to find...hope, positive stories, she is a little shell-shocked right now. In the appointment yesterday there were a lot of puppy dog sad looks, shaking the head, and I'm so sorrys, from her doctor. She is 58, full of energy and such an amazing loving mom and "nana", and has a lot more life to live. My dad was killed in a car accident a couple years ago and she has kept our familly together, so we aren't giving her up! I am going to find out the chemos that the doc is reccomending and get back here to see if anyone has experience with them. I hope she will come to this board, in the meantime thank you so much for letting me benefit from all of your wonderful information and inspiration.

  • waves
    waves Member Posts: 13
    edited January 2011
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    I am very depressed.  Everyone tells me to think positive and keep hanging on to hope but whatever I grasp onto seems to dissolve in my hand.  I am about to leave MD Anderson, with them saying they have nothing else to offer me.  I have been on abraxene and avastin and my enzymens appear to be moving up.

    Has anyone had any kind of luck anywhere??  Out of country???

    I have mets to the liver and lungs and am now triple negative.  Did I mention how sad I am.  I pray, tons of people are praying for me.  I try eating well, juicing, brown rice.....

    Please any information would be helpful.  After MDA has told me they have nothing else to offer I feel like I am being sent home to die.

    :( Sorry to be such a bummer. 

  • Unknown
    edited January 2011
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    Waves, Wow, sorry to hear that about MDA....I thought they were ones who never said never....did you check to see if they have any clinical trials.  Triple negative is rough, but there are women on here who are Triple negative and they even had a thread I think and I am sure they can offer you some hope and advice.  The point is we are all different, we all respond differently and we are not statistics, we are people and although there are many who say positive thinking is a bunch of hooey, I sure don't think being negative is going to get you anywhere, other than making you feel even more down that you already are.  There are many who haEncouraging Triple Neg PARP newsve beaten the odds and hopefully some of them will come forward and share their stories....try finding the triple neg thread....heck I will go look for it for you....you go to search and type it on the topic line.  I like to say there is always hope and I truly think until you draw that last breath there is.

    And Jenny, The same goes for you and your mom....don't give up hope.  So far as her coming to the boards, let her make up her own mind on that.  They have been an immense sourse of help and comfort for me and a great place to vent, but my friend found them to be a bit too informative and she said she prefers not to know too much because then she finds herself thinking something that happened to one of them, will happen to her.   Drs do not know everything, there are just too many variables to consider and all they can do is recommend what they think will work and give us an educated guess. I have learned as much if not more from the women on these boards than I have learned from doctors. When you come right down to it, only God knows what is in store for us.  Well that addition did not go in where I wanted it, but it was a topic posted by English Major about a drug being used on Triple Neg. and I am sure there are more...

  • jenny13
    jenny13 Member Posts: 3
    edited January 2011
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    Thank you for your post. I agree with what you said, I mentioned this website to my mom but I think it will take time. She is still asking why they aren't trying to cure her now. I hate this. I can't stand seeing her scared and anxious. Sorry, it's obviously harder on those going through it I need to remain positive there is nothing good that comes from thinking the worst. I fully believe that there will be a cure for all of this soon, how can we predict the future? I told her about you and your story last night and she looked a little more hopeful.

    Anyway her doctor is starting Navelbine on tuesday. (my understanding is this is the one that has less side effects) She is afraid that this means less strong, her attitude is she wants the chemo that has the best chance of killing the most cancer regardless of side effects. I don't know if this is realistic but because she is basically healthy and symptom free(besides the nagging cough) this is how she feels. I need to do some more research  and have a lot more questions.

    thank you again, this board is a bit of a lifeline for me right now. All I want is to surround her with positive hopeful stories.

    Jenny

  • Unknown
    edited January 2011
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    Jenny,  I did Navelbine and really had no side effects other than being constipated.....Unfortunately it did not work for me, although I think it may have kept my bone mets from growing....they said unchanged, not stable which I always like to hear.....but I know of others on here who have had really good results with it....tumor markers down, tumors shrunk, remission even.....so it's worth a shot and if they are giving her any sort of treatment that is a good thing, it's not like they are throwing up their hands and saying OK, there is nothing more to do. I never wanted to even do chemo and now I am on my 4th one and when they tell me we have used them all up, I am going to look for something else to do.  And probably they dont want to give her something that is going to totally knock her down and make her sick...just guessing here, but believe me some of the treatments are harder to deal with than the disease.  And so far as you mom wondering why they aren't trying to cure her....remember there is NO cure, but there is treatment.  I know there is a navelbine thread and you can talk to some women on there whom it worked for.  Keep YOUR spirits up.....I am sure you being positive is a great deal of help to your mother.

  • Stiney
    Stiney Member Posts: 2
    edited January 2011
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    Hello my name is Stiney and I'm new. My partner is 36 and has Stage 4 breast cancer from diagnosis two months ago with mets to her bones, including spine, rib, hip, thigh and sternum. She's had two treatments of TAC so far and her primary tumor has shrunk 81%. The doctor today said they would do another PET scan after her 4th treatment. Her 3rd is next Wed. Is it possible that the chemo has whipped the mets into shape on her bones? They're going to start her on a bisphosphonate after the next treatment when she gets the all clear from the dentist.

    My father was looking up Ibandronate today after I told him about the bone mets and he said that she needed to have the doctor give her that one because it's supposedly fights better than any other. Does anyone know if this is true?

  • bpositive
    bpositive Member Posts: 10
    edited January 2011
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    waves....My name is Tiffany.  Im kinda new to this breast cancer stuff but Im NOT new to the human spirit.  Theres ALWAYS hope sweetheart.  ALWAYS.  I know its hard to stay positive...get pissed off, cry, scream, throw stuff..its OK. You are stronger than breast cancer!  Have you tried The MAYO Clinic?  Cancer Treatment Centers of America (locations all over the nation)  Loyola University here in Chicago has the Cardinal Bernadin Cancer Center.... I will do some research for you and post others if you would like.  Wish I could hug you. (((waves)))  I will be praying for you. Your not alone and Im praying for your sadness and despair to be taken away...Please keep me posted waves...Im here for you

  • Unknown
    edited January 2011
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    Stiney,  I think Ibandronate is the same as Boniva....the stuff we get at the oncologist's office is much stronger.  I was on zometa for years for my bone mets and was just switched to Xgeva(have had two treatments so far, once a month)  which is a lot easier to administer (it's just an injection, not IV drip) and also my onco told me it completely bipasses the kidneys and they worried about kidney damage with the zometa.( I never had any and of course they did not tell me this before)   I am no doctor, but this is what I know about biophosphonates.  I was on Aredia before they came out with zometa. There is danger of osteonecrosis with any of them, but I have never had any problems and also I am a dental hygienist and we have only had one patient in the two practices I work in, who had that.  

  • Stiney
    Stiney Member Posts: 2
    edited January 2011
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    Marybe I thought they were the same thing. Glad the onc stuff is stronger which I figured. I do love my dad for jumping on the internet immediately to do his nurse investigation thing though.

    Also the TAC she's doing now has shrunk the primary tumor 81% after two treatments, is it possible that the others shrunk as well? She still has 5 treatments and then the mastectomy on the right side then possible 6 months maintenance chemo or right on to oral chemo.

  • dreamwriter
    dreamwriter Member Posts: 678
    edited January 2011
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    I have been on pamidronate for bone strength for 5 yrs now.  It appears to be working well with no SEs.  I was pre-menopausal when this journey began.  I have had my ovaries zapped (radiation) which is much easier than having them removed.  I was told I had 9 to 12 months to live but have shocked them all by still being here 5 yrs later.  I started with a mastectomy and then FEC followed by Taxotere.  I then went the hormonal route with Tamoxifen and Femara.  I am now in a clinical trial with Faslodex and Zactima - Faslodex is a hormonal and Zactima is a chemo drug (pill).  I may have the placebo instead of the Zactima since that is what the trial is all about.  It has been an interesting 5 yrs.  I found new interests and resurrected old ones I had not enough time to do.  Keeping busy keeps the blues away.

  • mom2acat
    mom2acat Member Posts: 87
    edited February 2011
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    Hello ladies;

    It's been awhile since I have posted, so just a quick update; I was on CMF chemo from April through July of last year, and then my oncologist switched me to weekly Velban in September.



    I just had another bone scan Friday, and unfortunately, it shows some progression. I have new mets in the right hip, sternum and ribs. There is an area in my T 7 spine which is either mets or a fracture, but since I am not having a lot of pain there, my oncologist really doesn't think there is a fracture. I am getting an MRI on Friday to check it out.



    I did not have chemo today; he is going to have to change my treatment, but he hasn't decided on what yet, he will let me know next week.



    I am not looking forward to another MRI, even though I have Xanax I can take for it, I still really hate those. I am also anxious to find out what my treatment will be, whether it will be more chemo or something else.

  • sincitydealer
    sincitydealer Member Posts: 51
    edited February 2011
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    mom2acat, hope whatever they decide to give you, it puts a screeching halt on anymore progression.  I know what you mean about the MRIs.  I've had several and they all have to be open sided.  I get extremely claustrophobic if I even get near a regular one.  Is open sided an option for you?

    Peggy

  • mom2acat
    mom2acat Member Posts: 87
    edited February 2011
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    No, unfortunately there are no open sided ones close enough to me.

  • Annick
    Annick Member Posts: 1
    edited February 2011
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    Staystrong through everything,

    It is indeed possible to live with this 'chronic' disease for many, many years. I did not read all of the posts here but I did get to yours and felt I must reply. Never lose hope. Through good days and bad, always remember that there is hope, still.

    I was originally diagnosed stage 4 from the outset, mets to spine and within a month of diagnosis the beast had moved on to my pelvic bone. Lumpectomy, and started chemotherapy clinical trial here in Colorado on two chemo drugs, sutent and zolfol, I believe, I can't remember the second just now (this was in december 2008).

    I received just one chemotherapy treatment, and my chemo port got infected, I went septic and my kidneys failed. I was in recovery for several weeks. I had radiation to my spine in four areas during this time.

    Because I could not complete the clinical trial, they put me on daily arimidex. I also get monthly zometa injections. And luperon every 3 months to stop my cycle, as I was premenopausal.

    I continue to research for ideas, encouragment, hope. I have 3 children. Today as I drove them to various places to meet their friends, I thought, over and over, I am not going to see their happiness. I am not going to hold their children.

    Its so hard to keep your chin up. My son is 19, my daughters are 15 and 13. Most days I do not think about this disease. To be honest, most days I think about work, my husband, my house, my dogs, what to have for dinner.

    Many people have lived decades with this disease. This is what I hope for.

    Love Annick

  • Diana_B
    Diana_B Member Posts: 4
    edited February 2011
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    33skidoo:

    I am PR- too and have done a lot of research on it.

    The main thing I've found out is that we do not respond as well to the hormonals as PR+ women. Tamoxifen in particular is thought to be ineffective for us (it certainly was in my case).

    I've never found anything about responses to chemo drugs. I have read, though, that PR- is thought to be more aggressive generally.

    I think that this is a neglected issue. There's really very little out there on the subject.

  • mom2acat
    mom2acat Member Posts: 87
    edited February 2011
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    I started Navelbine today; it will be every week for 3 weeks then a week off. This one shouldn't cause any nausea, but it does cause partial or complete hair loss, and constipation. Not too happy about losing hair again, but not much I can do about it.



    The MRI shows that the area on the T7 spine is not a fracture, but I have a couple of bone bone mets there, and my whole T spine has bone mets on most of it. Some of those mets though are old ones.