Xeloda and Tykerb

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MSM1003
MSM1003 Member Posts: 15
edited March 2014 in Breast Cancer #1
In July, 2009 a tumor on the left breast was discovered by me to be cancer Stage IIb, HER-2, 2/7 lymph nodes positive. Previous on time mammograms showed nothing. After removing by lumpectomy, I got an infection which required home health care everyday for 5 months.
By fall, Herceptin was started and in the winter two chemo treatments were endured. The PICC line caused blood clots, and I take daily injections of blood thinners in my stomach every day. As soon as chemo was done in March 2010, a brand new tumor appeared, again discovered by me. A CT and PET scan would revile Stage 4 HER-2 Breast Cancer with “local” new tumor right next to the old one, positive lymph nodes, mets (secondary) tumor in the middle of my liver with cells in my bones, and stomach. The doc says that the liver is now the big concern, and the breast has to go later with before and after cancer cells. Because of where the cancer is in my liver, it is inoperable. Radiation and operation are not an alternative either. This makes chemo my 6th treatment. My doctor tried another chemo and this one caused numbness and tingling in my finger tips, so it was stopped. My family is devastated and my heart goes out to all the past, present and future patients.
Herceptin, the miracle drug did not work for me. I am currently taking Xeloda and Tykerb pills. Since I am 44 years old and in good health, I thought I should at least give it a try. My side effects for two weeks now include: occasional sharp pain in the right side, decreased appetite, and loose bowel movements. You can get hand and foot syndrome, and I have been faithfully using the udder cream they provided with my prescription. I go back to the doctor tomorrow for a measurement to see if it has decreased in size. He measured my breast from the outside 6.5 cm. Anybody have anything like this?

Comments

  • Aortus
    Aortus Member Posts: 967
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    My heart goes out to YOU
    You have already been through so much with your first tumor and now you're getting this thrown at you. The fact that you're still thinking of other patients with all this going on says to me that you are an especially strong and caring person, and that you will be able to handle this latest round of awfulness too.

    My beloved Moopy (diagnosed 11/2008 with stage 3a TNBC) has not had any similar experiences. But we did, over the course of her treatments last year, meet a retired lady who had been on Xeloda for four years, due to metastatic colon cancer. Honest to God, when we met her and her husband, we thought HE was the patient: he was quiet and thin and kinda mournful looking. She, on the other hand, was lively and chirpy, and flouncing around talking to all of her buddies in the waiting room. To look at her, we would never have guessed in a million years the list of things that woman had been through. She flat out told us to tell everyone we ran into that there is life after a dx of metastatic cancer, and it can be a very good one.

    So now I'm telling you, MSM. It's a shame I can't bottle that lady up and just mail her to people who need to hear her story, because I'm not doing her justice. But I can tell you that there's no reason why you can't knock the beast on its heels and go on with a happy life. I hope and pray that you will do just that!

    Best,
    Joe (Aortus)
  • MSM1003
    MSM1003 Member Posts: 15
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    Aortus said:

    My heart goes out to YOU
    You have already been through so much with your first tumor and now you're getting this thrown at you. The fact that you're still thinking of other patients with all this going on says to me that you are an especially strong and caring person, and that you will be able to handle this latest round of awfulness too.

    My beloved Moopy (diagnosed 11/2008 with stage 3a TNBC) has not had any similar experiences. But we did, over the course of her treatments last year, meet a retired lady who had been on Xeloda for four years, due to metastatic colon cancer. Honest to God, when we met her and her husband, we thought HE was the patient: he was quiet and thin and kinda mournful looking. She, on the other hand, was lively and chirpy, and flouncing around talking to all of her buddies in the waiting room. To look at her, we would never have guessed in a million years the list of things that woman had been through. She flat out told us to tell everyone we ran into that there is life after a dx of metastatic cancer, and it can be a very good one.

    So now I'm telling you, MSM. It's a shame I can't bottle that lady up and just mail her to people who need to hear her story, because I'm not doing her justice. But I can tell you that there's no reason why you can't knock the beast on its heels and go on with a happy life. I hope and pray that you will do just that!

    Best,
    Joe (Aortus)

    My heart goes out to YOU
    It has been a lot to endure alone in my head even with a support group that rocks. You have just told me a story that is brave and encouraging and I thank you for this. I will think of this story as a bottle full of positive energy. Every time I take the meds this will help them go down better. It is amazing how cancer brings us together, and the support has been unbelievable.
  • Ritzy
    Ritzy Member Posts: 4,381 Member
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    MSM1003 said:

    My heart goes out to YOU
    It has been a lot to endure alone in my head even with a support group that rocks. You have just told me a story that is brave and encouraging and I thank you for this. I will think of this story as a bottle full of positive energy. Every time I take the meds this will help them go down better. It is amazing how cancer brings us together, and the support has been unbelievable.

    I am so sorry MSM for all
    I am so sorry MSM for all that you are going through at this time. You sound to me like a very brave, courageous fighter!

    I will put you in my prayers and I am going to send you some big hugs today!


    Sue :)
  • meena1
    meena1 Member Posts: 1,003
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    I recently had a reoccurance
    I recently had a reoccurance that sound similar to yours. I was originally diagnosed July 2008 with breast cancer. I had taxol and Herceptin and i was told that i was in remission. I was not feeling well for a few months so I had ct scan done and on June 3, 2010 I was told I have a large tumor in my liver which also spread to my stomach. I previously had bone mets. So i also have a tumor in my liver, which is inoperable, and also my bones and stomach. Right now, I am on Taxol and Herceptin weekly. I also am HER-2 positive. My doctor has said that I will be in chemo for approx 6 months, then i do not know what will happen. I know that the chemo is working since i do feel a lot better. I had a lot of pain in my stomach and right side before i started chemo and now it does not hurt as much, I still am tired but not in as much pain. There is another woman who comes on the boards who has a similar story, she is in a clinical trial. Where do you live, please keep in touch with me. I also am on a drug called Zometa which is to strengthn my bones. I also have had the same side effects as you, pain in right side, decreased appetite and loose bowel movements, if i even have one. The woman in the clinical trial is also taking xeloda and tykerb. I am 54 years old. I am glad that you are giving this a try, i plan to fight this and will try anything.
  • jnl
    jnl Member Posts: 3,869 Member
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    meena1 said:

    I recently had a reoccurance
    I recently had a reoccurance that sound similar to yours. I was originally diagnosed July 2008 with breast cancer. I had taxol and Herceptin and i was told that i was in remission. I was not feeling well for a few months so I had ct scan done and on June 3, 2010 I was told I have a large tumor in my liver which also spread to my stomach. I previously had bone mets. So i also have a tumor in my liver, which is inoperable, and also my bones and stomach. Right now, I am on Taxol and Herceptin weekly. I also am HER-2 positive. My doctor has said that I will be in chemo for approx 6 months, then i do not know what will happen. I know that the chemo is working since i do feel a lot better. I had a lot of pain in my stomach and right side before i started chemo and now it does not hurt as much, I still am tired but not in as much pain. There is another woman who comes on the boards who has a similar story, she is in a clinical trial. Where do you live, please keep in touch with me. I also am on a drug called Zometa which is to strengthn my bones. I also have had the same side effects as you, pain in right side, decreased appetite and loose bowel movements, if i even have one. The woman in the clinical trial is also taking xeloda and tykerb. I am 54 years old. I am glad that you are giving this a try, i plan to fight this and will try anything.

    Sending prayers to both of
    Sending prayers to both of you.

    Hugs, Leeza
  • mneufeld
    mneufeld Member Posts: 3
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    Alimta
    Speaking on behalf of my wife, we have been on/tried herceptin and navelbine, tykerb, xeloda, tamoxin, cmf and something else. The herceptine and navelbine worked for about six months. We tried tykerb and the other combos but found them to be too toxic. If toxicity is a problem for you, ask your doc about alimta. My wife was about to chose paliative care when her doc suggested that alimta, and a new protocal, could be effective. Well it sure has. Lesions in the liver and abdomen are smaller and or gone. No new activity has been seen. Also, a recent MRI suggested that the alimta may be effective in crossing the blood brain barrier; post treatment leasions were getting smaller and or reducing.

    Jim
  • carkris
    carkris Member Posts: 4,553 Member
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    mneufeld said:

    Alimta
    Speaking on behalf of my wife, we have been on/tried herceptin and navelbine, tykerb, xeloda, tamoxin, cmf and something else. The herceptine and navelbine worked for about six months. We tried tykerb and the other combos but found them to be too toxic. If toxicity is a problem for you, ask your doc about alimta. My wife was about to chose paliative care when her doc suggested that alimta, and a new protocal, could be effective. Well it sure has. Lesions in the liver and abdomen are smaller and or gone. No new activity has been seen. Also, a recent MRI suggested that the alimta may be effective in crossing the blood brain barrier; post treatment leasions were getting smaller and or reducing.

    Jim

    Jim that is awesome, thanks
    Jim that is awesome, thanks for sharing, that, I am sure it encourages the people who are dealing with stage 4, and the ones who worry about recurrence, knowing there are good weapons in the arsenal.
  • MSM1003
    MSM1003 Member Posts: 15
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    Ritzy said:

    I am so sorry MSM for all
    I am so sorry MSM for all that you are going through at this time. You sound to me like a very brave, courageous fighter!

    I will put you in my prayers and I am going to send you some big hugs today!


    Sue :)

    Thank you Sue
    All prayers are welcome and working, I am up and enjoying this grand day.
  • MSM1003
    MSM1003 Member Posts: 15
    Options
    meena1 said:

    I recently had a reoccurance
    I recently had a reoccurance that sound similar to yours. I was originally diagnosed July 2008 with breast cancer. I had taxol and Herceptin and i was told that i was in remission. I was not feeling well for a few months so I had ct scan done and on June 3, 2010 I was told I have a large tumor in my liver which also spread to my stomach. I previously had bone mets. So i also have a tumor in my liver, which is inoperable, and also my bones and stomach. Right now, I am on Taxol and Herceptin weekly. I also am HER-2 positive. My doctor has said that I will be in chemo for approx 6 months, then i do not know what will happen. I know that the chemo is working since i do feel a lot better. I had a lot of pain in my stomach and right side before i started chemo and now it does not hurt as much, I still am tired but not in as much pain. There is another woman who comes on the boards who has a similar story, she is in a clinical trial. Where do you live, please keep in touch with me. I also am on a drug called Zometa which is to strengthn my bones. I also have had the same side effects as you, pain in right side, decreased appetite and loose bowel movements, if i even have one. The woman in the clinical trial is also taking xeloda and tykerb. I am 54 years old. I am glad that you are giving this a try, i plan to fight this and will try anything.

    Meena1
    My name is Melissa, and I am from Louisville, Kentucky. It is nice to know that somebody out here has close to the same thing that I do, and a pleasure to meet you. It is so nice to get support, and see what others are getting in treatment. I am sorry to hear you have had a reoccurrence, and will add you to my prayer list. Did they test you every three months and found it spread this last time? I know I was just IDC Breast Cancer in December 2009, and then March 2010 ahowed the spreading in so many places. The good news is there is no evidence the cancer is in my brain or lungs.

    Friday, my oncologist said he thinks my breast tumor has gone down some. He said “It was harder to locate”. Since I have only had 11 days into the new chemo, next Friday he will measure it with his tools. I think my breast have gotten smaller because I am losing weight, I have to make myself eat with these medicines. I have lost 15 pounds in about 13 days. I don’t see the tumor as smaller, but still took this as good news. He says that I will only get CT scan every 3 months to know for sure. This seems like way too much time to hurry up and wait. I think that is the worst thing about cancer is all the waiting. If the tumor in my liver can be moved close to nothing, then they will remove my breasts, but I will always be on some type of chemo.

    Recently, I read some sites that were very discouraging on prognosis for Stage 4 BC with Liver mets. They stated secondary cancer (mets) is harder to get rid of and keep away. When I asked the doctor about this, he agreed secondary is harder to get rid of, but was very encouraging. He said some of his patients with similar cancer to mine have normal lives and still work. Wow, that is impressive, and I pray I am in that small percentage. Don’t get me wrong, I pray for the cure, and am grateful for everyday that I am still here.
  • MSM1003
    MSM1003 Member Posts: 15
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    jnl said:

    Sending prayers to both of
    Sending prayers to both of you.

    Hugs, Leeza

    Prayers
    Thank you
  • MSM1003
    MSM1003 Member Posts: 15
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    mneufeld said:

    Alimta
    Speaking on behalf of my wife, we have been on/tried herceptin and navelbine, tykerb, xeloda, tamoxin, cmf and something else. The herceptine and navelbine worked for about six months. We tried tykerb and the other combos but found them to be too toxic. If toxicity is a problem for you, ask your doc about alimta. My wife was about to chose paliative care when her doc suggested that alimta, and a new protocal, could be effective. Well it sure has. Lesions in the liver and abdomen are smaller and or gone. No new activity has been seen. Also, a recent MRI suggested that the alimta may be effective in crossing the blood brain barrier; post treatment leasions were getting smaller and or reducing.

    Jim

    Alimta
    You stated the MRI suggests that the Alimta may be crossing the blood brain barrier. What is the blood brian barrier? Thanks for your help.
  • mneufeld
    mneufeld Member Posts: 3
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    MSM1003 said:

    Alimta
    You stated the MRI suggests that the Alimta may be crossing the blood brain barrier. What is the blood brian barrier? Thanks for your help.

    Alimta
    The blood brain barrier is a "barrier" that usually prevents chemo or other targeted therapies from "crossing" into the brain. Breast cancer frequently metastasizes in the brain and it had been difficult to treat, with the exception of radiation. Tykerb is effective in crossing the barrier, but for us, it was too toxic. If the Alimta is effective in crossing the brain, it will be a very important therapy for people who find Tykerb ineffective or too toxic.
  • New Flower
    New Flower Member Posts: 4,294
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    mneufeld said:

    Alimta
    The blood brain barrier is a "barrier" that usually prevents chemo or other targeted therapies from "crossing" into the brain. Breast cancer frequently metastasizes in the brain and it had been difficult to treat, with the exception of radiation. Tykerb is effective in crossing the barrier, but for us, it was too toxic. If the Alimta is effective in crossing the brain, it will be a very important therapy for people who find Tykerb ineffective or too toxic.

    Melissa
    I missed your post since I was out for holidays. My thoughts and prayers with you, Meena, and mneufeld family.
    Jim Thanks for the info about Alimta.
    Please stay positive and fight cancer by all possible means.
    Hugs,
    New Flower
  • MSM1003
    MSM1003 Member Posts: 15
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    Melissa
    I missed your post since I was out for holidays. My thoughts and prayers with you, Meena, and mneufeld family.
    Jim Thanks for the info about Alimta.
    Please stay positive and fight cancer by all possible means.
    Hugs,
    New Flower

    New Flower
    Thank you for your prayers and thoughts. On Friday, the doctor said that the breast tumor measured from the outside around 3 cm smaller. We won't know anything until the scans in August later this month now, but good news as he thinks this is an indication of all tumors getting smaller on Tykerb and Xeloda. The side effects stink and utter cream is my new friend for my hands and feet. I am eating a little more too, the weight is still coming off but more slowly now.
  • MSM1003
    MSM1003 Member Posts: 15
    Options
    meena1 said:

    I recently had a reoccurance
    I recently had a reoccurance that sound similar to yours. I was originally diagnosed July 2008 with breast cancer. I had taxol and Herceptin and i was told that i was in remission. I was not feeling well for a few months so I had ct scan done and on June 3, 2010 I was told I have a large tumor in my liver which also spread to my stomach. I previously had bone mets. So i also have a tumor in my liver, which is inoperable, and also my bones and stomach. Right now, I am on Taxol and Herceptin weekly. I also am HER-2 positive. My doctor has said that I will be in chemo for approx 6 months, then i do not know what will happen. I know that the chemo is working since i do feel a lot better. I had a lot of pain in my stomach and right side before i started chemo and now it does not hurt as much, I still am tired but not in as much pain. There is another woman who comes on the boards who has a similar story, she is in a clinical trial. Where do you live, please keep in touch with me. I also am on a drug called Zometa which is to strengthn my bones. I also have had the same side effects as you, pain in right side, decreased appetite and loose bowel movements, if i even have one. The woman in the clinical trial is also taking xeloda and tykerb. I am 54 years old. I am glad that you are giving this a try, i plan to fight this and will try anything.

    I recently had a reoccurance
    How are you doing?
  • fraser
    fraser Member Posts: 4
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    Ritzy said:

    I am so sorry MSM for all
    I am so sorry MSM for all that you are going through at this time. You sound to me like a very brave, courageous fighter!

    I will put you in my prayers and I am going to send you some big hugs today!


    Sue :)

    crazy tail waggin cat
    Hi Ritzy Sue, I realize this is a serious board, with serious subject matter, . . . but.... I just have to know where I can get one of these crazy tail waggin, butt waggin cat icons. That is me, to the T! Thanks from a tail waggin, round 3, sunny survivor.
  • fraser
    fraser Member Posts: 4
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    mneufeld said:

    Alimta
    Speaking on behalf of my wife, we have been on/tried herceptin and navelbine, tykerb, xeloda, tamoxin, cmf and something else. The herceptine and navelbine worked for about six months. We tried tykerb and the other combos but found them to be too toxic. If toxicity is a problem for you, ask your doc about alimta. My wife was about to chose paliative care when her doc suggested that alimta, and a new protocal, could be effective. Well it sure has. Lesions in the liver and abdomen are smaller and or gone. No new activity has been seen. Also, a recent MRI suggested that the alimta may be effective in crossing the blood brain barrier; post treatment leasions were getting smaller and or reducing.

    Jim

    Alimta
    Hi, I'm currently on Xeloda and Tykerb, and doing well, but I'd be very interested to hear more about Alimta . . . not something I've ever heard mentioned. I try not to dwell on cancer issue daily, but I find it helps to be informed about other stuff in the pipeline, just to stay positive. Thanks for any info.