Help!

John_32
John_32 Member Posts: 71
edited March 2014 in Brain Cancer #1
My wife (age 40) has multiple brain lesions, as a result of breast cancer metastasis, for which she received 5 days of whole brain radiation almost two months ago. She lost all her hair and is excessively tired and weak and unable to walk for more than a few minutes. There has been no follow up with the doctors and they are really not offering her any further treatments. I am not sure if her weakened condition is the result of the one week of whole brain radiation, nearly two months ago, or whether it is a sign that the brain cancer is getting worse. So I don't know whether I can expect her condition to improve or not. Has anyone else been through this?

Comments

  • sue Siwek
    sue Siwek Member Posts: 279
    john, she is most likely
    john, she is most likely tired from radiation. but, i am concerned that there has been no follow up with her doctors. please call them. you must be your wifes voice. if her doctors don't respond and even if they do, please go to the nearest hospital that is involved in research. please, please do not be complacent. insist and advocate for her. my husband is about to begin his 11th year of survival from a grade 3 brain tumor because we went to the best hospital in our area and because i would not take no for an answer. tomorrow get on the phone and tell someone what you need. keep in touch.
  • shumba
    shumba Member Posts: 5
    wbrt
    my wife suffered from extreme fatigue caused by wbrt she also lost all her hair,you really need to get your wife checked as my wifes tumors grew quickly when the effects of the radiation started wearing off.
  • John_32
    John_32 Member Posts: 71
    shumba said:

    wbrt
    my wife suffered from extreme fatigue caused by wbrt she also lost all her hair,you really need to get your wife checked as my wifes tumors grew quickly when the effects of the radiation started wearing off.

    Thank you for your replies.
    Thank you for your replies. We were told that the WBRT was the only treatment they could offer her and that it is not possible to have this treatment more than once. I instinctively want her to have a follow up with the hospital right away and am trying to bring this about, and yet at the same time I do not know if there is anything else that can still be done at this point? Were any other treatments or drugs available to your wife following her brain radiation?

    This is such hell.
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    John_32 said:

    Thank you for your replies.
    Thank you for your replies. We were told that the WBRT was the only treatment they could offer her and that it is not possible to have this treatment more than once. I instinctively want her to have a follow up with the hospital right away and am trying to bring this about, and yet at the same time I do not know if there is anything else that can still be done at this point? Were any other treatments or drugs available to your wife following her brain radiation?

    This is such hell.

    Have you tried MD Anderson...
    Are you able to contact MD Anderson (Houston Texas)and explain what is going on to them to see if they may possibly have any opinions on what may be available for her.....
  • PBJ Austin
    PBJ Austin Member Posts: 347
    Buzzard said:

    Have you tried MD Anderson...
    Are you able to contact MD Anderson (Houston Texas)and explain what is going on to them to see if they may possibly have any opinions on what may be available for her.....

    MD Anderson
    John, I don't know where you live but if you can get to MD Anderson please do. If you can't get her in as a patient then I second the recommendation just to talk to someone about a referral in your area. My sister is a patient and MD Anderson has done wonders for her brain cancer. Good luck and God bless you and your wife.
  • sue Siwek
    sue Siwek Member Posts: 279
    John_32 said:

    Thank you for your replies.
    Thank you for your replies. We were told that the WBRT was the only treatment they could offer her and that it is not possible to have this treatment more than once. I instinctively want her to have a follow up with the hospital right away and am trying to bring this about, and yet at the same time I do not know if there is anything else that can still be done at this point? Were any other treatments or drugs available to your wife following her brain radiation?

    This is such hell.

    john, if you are on the east
    john, if you are on the east coast duke is the place to go. there are other hospitals around the country that are part a consotium of hospitals that benefit from duke and md anderson so you can get good treatment elsewhere. just check the hospitals credentials and who they work with. my husband went to henry ford and he is about to begin his 11 year. ford works with duke.
  • John_32
    John_32 Member Posts: 71
    sue Siwek said:

    john, if you are on the east
    john, if you are on the east coast duke is the place to go. there are other hospitals around the country that are part a consotium of hospitals that benefit from duke and md anderson so you can get good treatment elsewhere. just check the hospitals credentials and who they work with. my husband went to henry ford and he is about to begin his 11 year. ford works with duke.

    Thank you for your
    Thank you for your suggestions. My wife and I lost our jobs because of the recession, so we do not have health insurance, but because my wife is Canadian she is able to be treated for free in Ontario, but this means of course we do not have access to the American hospitals which I am certain are more medically advanced, like MD Anderson. The Canadian doctors, which in most respects have provided good care over the last two years, seem now to be saying there is nothing more they can do other than five days of whole brain radiation-which itself seemed much less than the four weeks of WBRT that I hear about being prescribed in the US.
  • sue Siwek
    sue Siwek Member Posts: 279
    John_32 said:

    Thank you for your
    Thank you for your suggestions. My wife and I lost our jobs because of the recession, so we do not have health insurance, but because my wife is Canadian she is able to be treated for free in Ontario, but this means of course we do not have access to the American hospitals which I am certain are more medically advanced, like MD Anderson. The Canadian doctors, which in most respects have provided good care over the last two years, seem now to be saying there is nothing more they can do other than five days of whole brain radiation-which itself seemed much less than the four weeks of WBRT that I hear about being prescribed in the US.

    well, i am american and i
    well, i am american and i believe that u.s hospitals are best. let me share with you that someone i knew years ago had a brain anurism(sp) and went to canada for help, he lived for 50 yrs after. just ask questions, ask for what reason for every treatment. she needs you to make sure that these drs. are doing everything possible. question everything. make sure that you understand what and why they are using protocals. your wife is in the fight of her life and she will not have the desire nor energy to do this. you are her voice, sorry it is hard but she has it much harder. best of luck.
  • bubica1949
    bubica1949 Member Posts: 8
    sue Siwek said:

    well, i am american and i
    well, i am american and i believe that u.s hospitals are best. let me share with you that someone i knew years ago had a brain anurism(sp) and went to canada for help, he lived for 50 yrs after. just ask questions, ask for what reason for every treatment. she needs you to make sure that these drs. are doing everything possible. question everything. make sure that you understand what and why they are using protocals. your wife is in the fight of her life and she will not have the desire nor energy to do this. you are her voice, sorry it is hard but she has it much harder. best of luck.

    Help
    Hi
    I just found this information about your wife. If she is still alive you should contact Dr. Burzynski Clinic in Houston, Texas.
    Best wishes
  • stayingcalm
    stayingcalm Member Posts: 650

    Help
    Hi
    I just found this information about your wife. If she is still alive you should contact Dr. Burzynski Clinic in Houston, Texas.
    Best wishes

    No
    She should not do that.
    About Burzynski

    More, at the Millenium Project
  • Jake.Alive
    Jake.Alive Member Posts: 4
    I just watch the video about Burzynski &
    would have to say that quack watch post and the millenium post are both highly erroneous. You have obvliously not seen this video nor looked inot Burzinski's work at any depth.

    I suggest you get hold of the movie and see what is really going on before saying 'no'.

    For those looking for a possible way out of gthis hoorible braoin cancer, Burzynski's work offers a lot of hope and he has cured many people. I think this fact as it has been published.

    J