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Chemotherapy for Stage IV

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  • Unknown
    edited April 2010
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        I clicked on that link and am sure it is very informative, but when things are written like that, I honestly cannot make heads or tails out of them.  I am having a CT Monday and a bone scan the following Monday and am quite sure they are going to tell me the megace is not working since my CA 27/29 has tripled since I started on it and don't like to be negative, but just can't think the scans are going to show anything has improved.  Gemzar is the one my onco suggested as the next step so it will probably be back to chemo for me.  I am going to update my bio since I haven't for awhile.

  • Alpal
    Alpal Member Posts: 112
    edited April 2010
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    Redskies - sounds like a great idea, but way beyond my capabilities. Being Stage IV from the get -go, I started out with 8 cycles of TC. Arimidex, then Faslodex, for the last 15 months. Due to progression, had my first Gemzar on Thursday. Supposed to be "easy" chemo. Compared to what? I don't remember feeling this bad on TC, but maybe chemo is like child birth. I think (hope) I feel some better this morning. We'll see ...

  • MaryCT
    MaryCT Member Posts: 3
    edited April 2010
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    Hi- I am new to this forum but have read lots of great information and received inspiration from many of you since my Stage 4 recurrence Dx in March, 2009.I was optimistic after reading your experiences with AIs. Unfortunately, Faslodex, Femara and Aromasin did not work for me so I started Xeloda and Avastin 0n 4/7/2010.So far so good regarding SE. It is very comforting and encouraging to read the many stories of my Stage IV sisters who are doing so well. I'll keep the positive attitude!

  • undecided8
    undecided8 Member Posts: 4
    edited April 2010
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    Does anyone know how often they redo a PET scan to check the progress of chemo on stage 4 folks lilke myself. I've had 3 chemo now and was just curious when Onc. might schedule another scan to check to see if it's progressed or hopefully NED now???

    Thanks Suzanne E.

  • FrancescaS
    FrancescaS Member Posts: 1
    edited April 2010
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    My doctor schedules tests if my tumor marker goes up or if they find something in my blood. I was on Xeloda, until last summer, and my doctor found 42 new cells through my blood tests. I was put on Abrxsene(Spelling?) and that worked for awhile, until February, when my tumor marker went up again. I had a CT scan, where nodules were found on my liver. I took 2 Doxil treatments, and the new CT scan doesn't show the nodules anymore. Hopefully , Doxil is working

  • Becca57
    Becca57 Member Posts: 1
    edited April 2010
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    I've been Stage IV for 13 years.  During that time I've been on 10 different types of treatment, hormone and chemo.  I've had lots of scans but only 3 PET scans in all that time.

  • Unknown
    edited April 2010
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      I have never had a PET scan and have always wondered why.  When I went to MDA they said I didn't need one and my onco here says I don't need one, but I still wonder why.  Becca, What treatments have you had?   

  • lovethesea
    lovethesea Member Posts: 11
    edited April 2010
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    Dear Suzanne:

    I just discussed this with my oncologist yesterday.  He suggests yearly for me.  I was diagnosed w/breast cancer (5 of 14 positive nodes) in 1987.  I chose to stay on Tamoxifen for 10 yrs., then off for seven.  I was diagnosed w/ bone mets 6 yrs. ago and am on Zometa monthly along w/Aromasin.  I'm due for another PET in May.  I'm new to this group and interested in what might come next for me. A PET Scan shows all cancer sights and disease progression. The scan is expensive and my insurance (Blue Shield of California) covers it.  This will be my third PET and my experience with them has been very good.

    Sending positive thoughts your way.

     Lindy Griffin

  • Unknown
    edited May 2010
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        I have an appt with my onco on Wed. to discuss the results of the scans....had  CT yesterday and will have my bone scan on Monday.  Last scans showed progression everywhere which shocked me since the areas in my bones were always stable, however I do not worry about the cancer in my bones doing my in....it's the liver I worry about.  I am pretty sure the hormonal treatments just don't work for me any longer since my CA27/29 is rapidly going up and for me tumor markers have always been a very accurate indicator as to what is going on.  If I move onto chemo the suggestions I got from MDAnderson are as follows  Capecitavine (although there may be the chance of neuropathy since I had that with the Abraxane), Vinorelbine.  Gemcitabine.  Adriamycine with cyclophosphamide.  These are the technical names and I don't know what is what, but am pretty sure one is Navelbine and another Gemzare.  I am sure many of you have been on or may still be on one of these chemos and would appreciate hearing your results and SEs.   If I all possible I want to avoid the losening and eventual loss of nails.  I also would not want to have my tear ducts close off again since I am still dealing with after effects of that.  And I would like to avoid neuropathy since it doesn't always go away and also having my sense of taste is very important to me.   I know I have way too many stipulations and should just be praying they put me on something that will stop the progression of my cancer, BUT quality of life is very important to me at his stage of the game.  I have never missed work due to cancer or treatments and for me work is therapy so being able to continue with my normal routine means a lot to me. 

  • mthomp2020
    mthomp2020 Member Posts: 12
    edited May 2010
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    Marybe, I've been on Navelbine for a year now, along with Herceptin and Zometa, and the SE's have been very mild.  I have numbness in my fingers and toes from Taxol, and it has increased somewhat on the Navelbine.  I'm taking L-Glutamine, 30 grams a day, and I do believe it's helping it from getting too bad.  My hair thinned out a bit as well.  If you have thick hair to begin with, it won't even be noticeable.  It's kept the bone mets in my hip pretty stable.

    I did Adriamyacin/Cytoxin as my first chemo 3 years ago.  It really wasn't that bad for me at all, just some queasiness for a few days which was helped by eating or drinking.  For some women it can be pretty tough, though.  I had tumors throughout my liver, and they shrank considerably after 6 A/C tx's.  I had 6 Taxol/Herceptin following that, and the liver tumors were gone and my bone mets healed. 

    Unfortunately, it seems that almost every chemo out there has the possibility of causing neuropathy.  I was even noticing a little numbness when I was on Adriamyacin, which can also sometimes cause hand/foot syndrome.  Like you, quality of life is important since we don't have years and years left, and we'd like to at least enjoy what we've got left.  Not being able to perform everyday functions and loss of mobility don't quality as QOL, in my opinion.  I think our oncs get so hung up on prolonging our lives that they forget about how we'll have to live that life.

  • Unknown
    edited May 2010
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      I had my first navelbine treatment along with my zometa today.  I will be getting the navelbine once a week.  They gave me aloxi as premed just in case to ward off any possible nausea.  The teatment went smoothly so now I will just wait to see if I get any SEs....know from treatments in the past that it usually takes awhile.  Mthomp, did you get my PM ? 

  • redskies
    redskies Member Posts: 8
    edited May 2010
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    Xeloda question- my last blood work showed an elevated red blood cell count, onc said this happens with xeloda, didn't seem concerned.  anyone else have this happen?  it seems my hfs is worse the last 2 cycles, and I've read easy bruising is associated with elevated rbc count (did have a bruise for longer than usual from that lab work) so I am wondering if the hfs looks worse because of the high rbc... and also, why is xeloda doing this?

  • redskies
    redskies Member Posts: 8
    edited May 2010
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    oh, the elevated rbc count on Xeloda might be a good sign!  guessing it is the same as MCV ? (mean corpuscular value.)  an increase in MCV is suggested in the article as a potential marker of good response to xeloda :)

    though this study was done with metastatic colon cancer pts, it looks like it would apply to mbc too, here's some of the interesting stuff: 

    ...When comparing the rise of MCV with response to capecitabine, there was a statistically significant difference in rise of MCV between patients who responded to therapy and those who progressed on therapy.

    Capecitabine's cytotoxic effect is mainly due to inhibition of thymidylate synthase (TS). This is mediated by the 5-FU metabolite 5-fluoro-2′-deoxyuridine 5′-monophosphate (FdUMP), which blocks the production of thymidylate (dTMP), an essential enzyme for DNA synthesis in all cells. This blockade occurs by formation of a ternary complex with TS and 5,10-methylenetetrahydrofolate (CH2THF). The same blockade that leads to cell death and apoptosis at the level of the tumor is also hypothesized to be the cause of the elevation in MCV of red blood cells. Thymidylate synthase plays an essential role in red blood cell DNA synthesis downstream of the effects of folate, vitamin B12, and homocysteine. When DNA synthesis is slowed by lack of thymidylate due to TS blockade, the prolonged cell cycle allows time for excess synthesis of RNA and other cytoplasmic components, such as hemoglobin. Thus, it was hypothesized that inhibition of TS in erythroid precursor cells was the cause of elevated MCV levels in patients treated with capecitabine.

     published last summer (2009), free full text here:  http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2739638/

  • mom2acat
    mom2acat Member Posts: 87
    edited May 2010
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    I started CMF chemo last month, when my last bone scan showed 2 new mets.

    I have been on Zometa since April 2007, still getting that along with the CMF. I've had 3 of the CMF so far, the worst side effect so far is the fatigue. I get steroids along with the chemo, and the 2nd and 3rd day after are the worst, I feel like I can barely stay awake those days.

    I just started to notice some hair thinning this week. My oncologist told me that since I have had chemo before (AC in 2003), that it is more likely I will experience more hair loss on the CMF than someone who is having CMF without having had any previous chemo.

    It's also been hard on my WBC; they keep going down despite Neulasta injections.

  • dragana
    dragana Member Posts: 1
    edited May 2010
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    Hello everyone!

    I'm new here. I don't have BC. Actually I'm here because my aunt had BC and now she feels sooo good she wants to share it with the world. she doesn't know much about internet so she asked me to do it for her :)

    Well, the thing is that she was prior her 2nd mastectomy, but she refused the operation because she felt very sick and weak after the 1st one. she refused to go to any doctor. so we found the Budwig diet and also a clinic in Serbia prescribing Budwig diet along with other natural treatments.  We stayed there for 2 weeks, had a very  nice time, got a lot of advice and learned how to take care of ourselves (even me, as prevention).

    Today, 5 months later, she feels better than ever. She is still on the diet, but it's not like she is starving at all. Next week we'll travel to our doctor with new lab results :)

    She just wanted you all to know that it worked for her, so it might work for many others too.

    with love,   

    D.   :) 

  • Unknown
    edited May 2010
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       Had my 2nd navelbine treatment yesterday.  This time I saw the PA before going to the treatment room and told her how I had a fever last week, could tell by my eyes burning, but did not have a thermometer and then when I was at my Dad's did take my temp and it was 99.2.  I know this does not sound like much, but my normal body temp is never 98.6 unless I have a fever, my normal temp is more like 96.8.  I was perspiring a lot and on Sunday the burning eyes went away and so did the fever.  So she tells me most likely I had some sort of a virus.  Well, yesterday afternoon the burning eyes started again so I am sure it was not a virus.  I just don't understand why then never want to admit that something might be a SE from the chemo and always try to blame it on something else.  Actually other than feeling extremely tired for several days and sleeping more than I have for a long time, I have not experienced anything out of the ordinary, but know it is still early in the game. My onco said the navelbine will be on ongoing treatment for me IF it works....met a woman yesterday who had been doing it for 2 1/2 yrs.

  • mom2acat
    mom2acat Member Posts: 87
    edited May 2010
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    My normal temp is around 96 too.

    My oncologist told me if my temp reaches 100 or over, I'm suppose to go the ER, you are pretty close to 100, and with your symptoms, it sounds like maybe you should have some lab work done to check for an infection. I would keep a close watch on that tempurature.

    I hope you start feeling better soon!

  • LC815
    LC815 Member Posts: 5
    edited May 2010
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    Hi ladies,

    I have a question about chemo protocols.  I am on Taxol/Avastin.  So far, I've been able to work and continue chemo.  I teach school, so I will have the summer off starting June 11th.  I'm going to continue chemo (as long as there's no progression) all summer, but it's really kicking my butt after 15 treatments.  If I quit because of SE's, can I still have Taxol/Avastin in my arsenal?

  • dreamwriter
    dreamwriter Member Posts: 678
    edited May 2010
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    As far as I have heard, drugs can stay in the arsenal as long as there is no progression.... You can take a break and go back on them.

  • karens-kara-van
    karens-kara-van Member Posts: 3
    edited May 2010
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    Hi Marybe,

                     I had great succuss with navalbine for over a year. I had a low grade fever with every treatment! never went above 100 but it made me feel pretty crappy none the less. Started after the first day of treatment and lasted about 24hrs. The first time the onc. put me on an antibiotic but then when it happened every time we new it was from the navalbine. Tylonol worked great and i would take it as soon as i finished treatment to nip it in the bud. Other than that pretty easy chemo. Ironically I started it again yesterday. I have been on so many cocktails to no avail. It's been almost 3 years since my last round of navalbine so now we are giving it another try! so far no fever! hope it works for me again running out of options. Very frustrating skin mets! ugh  good luck!

  • Unknown
    edited May 2010
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    Karens-kara,  I get that fever type thing as you did after every treatment ( have only had 3 and am due for #4 tomorrow), but it's nothing I can't live with and it seemed to last a shorter period of time each time. Did it make you really sleepy....I am still working, but certainly do catch up on my sleep when I am off.  I hope it works for you the 2nd go-round.

    LC815,   I quit abraxane/avastin after 22 treatments because several of the SEs were really getting to me and I was afraid to let them get any worse for fear they would be permanant.  When I quit my onco said I could always go back to this treatment later since it really was working for me.  So I think dreamwriter is correct....as long as it was still working, you can go back on it later. 

  • hotsyta
    hotsyta Member Posts: 6
    edited May 2010
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    I have just been dx with Stage iv. I am starting Gemzar tomorrow. I had treatments in 2008 for my first dx of BC. I had AC but the T caused a major anaphylactic reaction. My onc had planned to put me on T but then when I told him about the reaction he was shocked (My previous tx were handle by onc and clinic in another city) and left the room and came back saying I would be on Gemzar.  How do I tell if this is the best tx for my situation? This is so scary, but I am relieved to see there are women on here that have been living at stage iv for many years. I just really need so hope right now. 

  • karens-kara-van
    karens-kara-van Member Posts: 3
    edited May 2010
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    Marybe,

                     I did get very tired on the Navalbine as well.It is very hard on your blood counts and I remember being anemic from it. That could cause tiredness for sure. I also remember if I kept active I was better off. If I laid down or sat on couch during the day I was much worse! Feel well! I will keep you posted!  Hugs!

  • optimist2
    optimist2 Member Posts: 1
    edited May 2010
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    How can any doctor give anyone a 3 year outlook? There are constantly new drugs and procedures coming out...I hate these doctors who stamp lifetime dates on patients. Has anyone looked into the power of the mind and positive thinking? I can see a 3 month or less prognosis, but 3 years? Are you joking? Most of these drugs are so new there aren't even real stats on their lifespans. Most doctors need a crash course on bed-side manners. Of course I am sick of the profit mongering drug companies too...I hope somebody is researching cures and not just patent-able drugs. I have some hopes for the national health care (less for the patched up compromise one that passed) which may prompt the government to look into studies into minerals, preventions, cures and not just drug-company-profitable drugs. I am sick of the callous insurance companies too...But I am hopeful...a few side-line procedures I am pursuing (and feel good about) in addition to the conventional chemo stuff are:

    Bodytalk sessions, and while I always had a very healthy lifestyle in every aspect (no alcohol or smoking, lots of exercise, nursing my kids for years, tons of veggies and fruit and lots of organic dairy/meat/produce), I am reading and trying to implement some new things based on the book "anti cancer; a new lifestyle" by Dr. David Servan-Schreiber who is an 18-year brain cancer survivor (with some recurrence too). We also bought a juicer ($59) and I feel that cylantro/lemon juice mix is really good for the liver function.

     Anyway, this is a bitter pill to swallow, and lots of power to all of you/us....the last thing we need is for some academic "doctor" to tell us how long we have left...let's plan on going back to these doctors in double that time-sentence and thumb our noses at them!

     

  • Unknown
    edited May 2010
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       I was wrong when I said I was getting #4....it was only #3...wishful thinking perhaps.

      I agree Opitmist, a dr should not give you a time frame like that....my onco always says he doesn't have a crystal ball when I ask about prognosis when I am trying to plan ahead.  There are many many treatments out there.  I have been Stage lV for 12 years and don't think I am anywhere near the end, may be looking at some treatments that I would just as soon avoid, but when it comes down to it I will do what I need to do. 

      My friend has had four A/C and they are adding the T next treatment.  Am hoping she does will with it.

        Hope it's a nice weekend to all of you.    Marybe

  • cujlm
    cujlm Member Posts: 1
    edited May 2010
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    hi, all

    my mom is stage IV breast cancer patient. Her condition is now deterioirating. with history of pericardical effusiion, her lungs are now filled with water, which keeps her gasping for air, and mets are also found in bones, lymph, skin and lung. Her oncologist suggests chemo -carboplatin- only after the water in her lungs is drawn. But her chinese med doctor warned her that she may succumb to the side effects and die right after the first shot of chemo..... Can any of you give me some guidelines on how to decide on chemo at this stage? I just want her to feel painless in her last journey....... 

  • sadeyes
    sadeyes Member Posts: 1
    edited May 2010
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    My sister had two stage 3 cancers, one breast cancer and the other a leiyomosarcoma tumer.The sarcoma tumor is no longer curable. They say its a aggressive tumor and the average time is 3 years. She is only 46, how on earth do we accept this??

  • milissalynn
    milissalynn Member Posts: 1
    edited June 2010
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    My mom who is 55 yrs old has breast cancer with mets to all of her bones and now her liver. She is er+/pr+. She had been on faslodex, aredia and lupron. Her cancer tumor markers have been going up and up and now at 1711. She is having problems of fluid building up in her abdomen and leg/feet. She has been going in for a paracentesis about every 3 days to have the fluid removed. been going for about 2 weeks now. total amount of fluid removed so far is 83lbs..so crazy. Well the dr has decided to put her on taxol and avastin. but her platelets keep getting low and low. as of last week they were 43000. the dr is wanting to put her in the hospital wednesday to begin the chemo. she is very scared because the dr says the chances of her bleeding to death is great. What i want to know is have any of you ladies taken taxol and avastin and what side effects did you experience? Please help we are scared..

  • RyanG46
    RyanG46 Member Posts: 1
    edited June 2010
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    There are many treatment for breast cancer. It should be treated or it changes the shapes of the breast.

    Ryan G,

     Myeloma treatment

  • ElaineD
    ElaineD Member Posts: 16
    edited June 2010
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    I think we are aware that it should be treated Ryan. More spam by the looks of it.