Yale Brain Tumor Center

Carriejane
Carriejane Member Posts: 2
edited March 2014 in Brain Cancer #1
Is there anyone out there who has knowledge regarding the work of Dr. Joseph Piepmeir and his team practicing at the Yale Brain Tumor Center, Yale University/New Haven CT??

My cousin is 56 years old and was diagnosed just under a year ago with Glioblastoma Multiforme, Stage 4. He has had 2 surgeries, radiation, and has been on Temador since the early summer (04) months. While his initial MRI (after Temador treatment began) was somewhat encouraging, his most recent results are not. The tumor has begun growing rapidly once again. He has been referred, by his Surgeon and Oncologist to Yale for ...??? next course of action? options? We are all very anxious and hopeful, but I am hoping to get some information from some of you who are living in the same world currently as he is (and we who love him are). My cousin lives in a somewhat rural area of the country and I am always concerned that he may not be receiving the best possible health care...while we all have to tried to encouraged him and his wife to seek treatment options from a larger medical environment (big city or University), he has remained loyal to his doctors. I feel that time is running out on him and I am desperate to share with you all what you know and are experiencing.

You are all in my prayers, please keep us in yours.

Comments

  • nanc721
    nanc721 Member Posts: 29
    #2
    Carrie.....My husband was diagnosed with GBM on Mother's Day of 2003. He also had the surgery, Temodar, and radiation. This past summer, he had surgery again and had Gliadel wafers implanted, and then had a stroke. He just finished 2 cycles of irinitecin, and will start tomorrow on oral CCNU. I haven't heard of the Yale Brain Tumor Center, but our doctor has been in touch with Dr. Friedman at Duke University Brain Tumor Center. Needless to say, we certainly know what you are going through. But you see, at this point, your cousin probably knows that NO ONE has a great answer to our problems...there is no sure fire cure out there...the docs just throw these different chemo combinations at the cancer, and we all hope each of them will work. The doctor today asked us if we wanted to go to Duke University, and my husband feels that unless they can say that they have the cure there, he would just as soon stick with our doc, who seems to keep current on all that is available. It isn't that we aren't trying everything, as some people seem to think...it is that we don't want to spend the time chasing after things that would just eat up the time he might have left, with aggravating schedules, traveling pressures, and general chaos. In my husband's case, when he is out of an area that is familiar to him, he is extremely uncomfortable. He says it is though there is just "too much input", as he puts it, and he just can't process it. So please respect whatever decisions your cousin makes, and don't try to hound him with all the new stuff there may be available out there. My bet is that he is perfectly aware of what his options are....he is making the choice that is best for him, and running his life on his terms. That may be as important to him as living for a couple more months might be to someone else.
  • nanc721
    nanc721 Member Posts: 29
    #3
    P.S. My husband is 51, almost 52. We have 2 boys, aged 19 and 17.
  • Carriejane
    Carriejane Member Posts: 2
    #4
    nanc721 said:

    Carrie.....My husband was diagnosed with GBM on Mother's Day of 2003. He also had the surgery, Temodar, and radiation. This past summer, he had surgery again and had Gliadel wafers implanted, and then had a stroke. He just finished 2 cycles of irinitecin, and will start tomorrow on oral CCNU. I haven't heard of the Yale Brain Tumor Center, but our doctor has been in touch with Dr. Friedman at Duke University Brain Tumor Center. Needless to say, we certainly know what you are going through. But you see, at this point, your cousin probably knows that NO ONE has a great answer to our problems...there is no sure fire cure out there...the docs just throw these different chemo combinations at the cancer, and we all hope each of them will work. The doctor today asked us if we wanted to go to Duke University, and my husband feels that unless they can say that they have the cure there, he would just as soon stick with our doc, who seems to keep current on all that is available. It isn't that we aren't trying everything, as some people seem to think...it is that we don't want to spend the time chasing after things that would just eat up the time he might have left, with aggravating schedules, traveling pressures, and general chaos. In my husband's case, when he is out of an area that is familiar to him, he is extremely uncomfortable. He says it is though there is just "too much input", as he puts it, and he just can't process it. So please respect whatever decisions your cousin makes, and don't try to hound him with all the new stuff there may be available out there. My bet is that he is perfectly aware of what his options are....he is making the choice that is best for him, and running his life on his terms. That may be as important to him as living for a couple more months might be to someone else.

    Good morning...thank you so very much for responding to my posting. Your sincere words have helped me a great deal. You told me to try and respect his decisions...WOW, your words really resonated. We are a large family and all so very close...always weighing in on each other's lives with our wisdom (haha) and opinion. My cousin is a man of very few words and that has not changed...if it is possible, he has less to say now than before. He doesn't want to talk about "it" to anyone. It is especially difficult on his wife - who really does need to talk about it with him..but doesn't want to upset him - not now. By him not talking, I suppose we think that he has given up fighting. He stopped working and living his life, he seems to be just sitting and waiting?? ....We are all so scared, we want desperately to help and yet, feel completely useless. We are "doers" and while we know (or say so) that love and prayers are really all that we can do, somehow it doesn't seem enough...Your words made me realize that this isn't about "us" the alleged support system, it is about "him"...I think somewhere along the way, albeit with good intentions, we may have lost track of that fact. In our efforts to "help", we have assumed that we all know what he should be doing. It is his life - you are absolutely right! Thank you! I will try to stop the hounding and just keep on loving him!
    Of course, I will continue to pray for a cure or at least better treatment for him, your husband and all of the other (17,000 they say)people out there fighting this horrible disease.
    28 years ago my mother passed from a brain tumor.
    Back then, there were no options...they didn't tell us much and what they did say was difficult to process and understand...things were very different in the world in 1976, no internet for research, no sites such as this, if there were others out there fighting the same battle - we didn't know it or them. Doctors had very few options and really didn't know much about diseases of the brain themselves - we felt isolated, we were.

    Thank you again, I have strong beliefs that everything in life happens the way it is suppose to; that there are no coincidences in this world - only connections - I am glad to have connected with you. Please let me know how your husband does with the CCNU...you are in my prayers.
    God's Speed.
  • nanc721
    nanc721 Member Posts: 29
    #5
    Carriejane said:

    Good morning...thank you so very much for responding to my posting. Your sincere words have helped me a great deal. You told me to try and respect his decisions...WOW, your words really resonated. We are a large family and all so very close...always weighing in on each other's lives with our wisdom (haha) and opinion. My cousin is a man of very few words and that has not changed...if it is possible, he has less to say now than before. He doesn't want to talk about "it" to anyone. It is especially difficult on his wife - who really does need to talk about it with him..but doesn't want to upset him - not now. By him not talking, I suppose we think that he has given up fighting. He stopped working and living his life, he seems to be just sitting and waiting?? ....We are all so scared, we want desperately to help and yet, feel completely useless. We are "doers" and while we know (or say so) that love and prayers are really all that we can do, somehow it doesn't seem enough...Your words made me realize that this isn't about "us" the alleged support system, it is about "him"...I think somewhere along the way, albeit with good intentions, we may have lost track of that fact. In our efforts to "help", we have assumed that we all know what he should be doing. It is his life - you are absolutely right! Thank you! I will try to stop the hounding and just keep on loving him!
    Of course, I will continue to pray for a cure or at least better treatment for him, your husband and all of the other (17,000 they say)people out there fighting this horrible disease.
    28 years ago my mother passed from a brain tumor.
    Back then, there were no options...they didn't tell us much and what they did say was difficult to process and understand...things were very different in the world in 1976, no internet for research, no sites such as this, if there were others out there fighting the same battle - we didn't know it or them. Doctors had very few options and really didn't know much about diseases of the brain themselves - we felt isolated, we were.

    Thank you again, I have strong beliefs that everything in life happens the way it is suppose to; that there are no coincidences in this world - only connections - I am glad to have connected with you. Please let me know how your husband does with the CCNU...you are in my prayers.
    God's Speed.

    Carrie...I am glad that I was able to help. I know what you mean about how important it is for your cousin to talk with his wife, and how hard it is on her that he doesn't talk. I am very lucky in that my husband is talking, which is a relatively new thing for him. However, I suspect that even with all of the deep conversations we have had, there may be some things he doesn't share with me....I just feel that although we are married, he is still an individual, and he is entitled to the dignity that comes with making his own decisions. I will keep your cousin and all of your family in my prayers.
  • josephb
    josephb Member Posts: 2
    #6
    nanc721 said:

    Carrie...I am glad that I was able to help. I know what you mean about how important it is for your cousin to talk with his wife, and how hard it is on her that he doesn't talk. I am very lucky in that my husband is talking, which is a relatively new thing for him. However, I suspect that even with all of the deep conversations we have had, there may be some things he doesn't share with me....I just feel that although we are married, he is still an individual, and he is entitled to the dignity that comes with making his own decisions. I will keep your cousin and all of your family in my prayers.

    Hooray for your advice, nanc! I have this malady as well and am sick and tired of the advice. After a while it does make you feel like people are looking at you as if you aren't doing enough to save your own self. It is true that I am treated at one of the top level treatment centers, but I'm not going to spend my life going to all of them. The SuperDocs are sharing information, tools, and even co-authoring articles. They aren't keeping secrets from each other. As a victim and a survivor, you have to strike a balance. I refuse to live my life as a "Cancer Survivor" and focus all my attention on my illness. I am much more than this wretched disease and I am not going to let it take away who I am! I know that sometimes you wonder why I am not interested in obsessing about the latest clinical trials. But that's not the life I'm going to live whether it be a short life or a long life....it will be the life I want!
  • maryanneka
    maryanneka Member Posts: 4
    #7
    Yes, your cousin does need to get help from a major cancer clinic! Local doctors can only do what they know, and don't always have experience with all kinds of cancer. You can help by calling one of them for him. This is not something to wait around on! Often the major cancer clinic will give opinions from patients records. They will offer suggestions about travel and housing in their area too. M.D. Anderson in Houston, TX was excellent - I went there after being told in my home town that I wouldn't live more than 3 - 6 months but the drs. in TX gave me hope and offered a clinical trial that I accepted. That was 6 years ago. I've had 2 surgeries, 30 radiation treatment and 1 year of chemo (mainly oral). What they offered locally was not even close to what I got in TX. I was very comfortable there in an apt that had a schuttle to the clinic that I took daily for 2 months during my radiation. I was encouraged daily, not told it was pointless! My belief is that God heals us, but he gives us wise doctors to care for us and advise us. All you can do is offer to help contact a cancer clinic for him and pray for a miracle, which is what I got. I pray that he gets one too. I'll be praying for wise decisions. MaryAnneKA
  • nanc721
    nanc721 Member Posts: 29
    #8
    maryanneka said:

    Yes, your cousin does need to get help from a major cancer clinic! Local doctors can only do what they know, and don't always have experience with all kinds of cancer. You can help by calling one of them for him. This is not something to wait around on! Often the major cancer clinic will give opinions from patients records. They will offer suggestions about travel and housing in their area too. M.D. Anderson in Houston, TX was excellent - I went there after being told in my home town that I wouldn't live more than 3 - 6 months but the drs. in TX gave me hope and offered a clinical trial that I accepted. That was 6 years ago. I've had 2 surgeries, 30 radiation treatment and 1 year of chemo (mainly oral). What they offered locally was not even close to what I got in TX. I was very comfortable there in an apt that had a schuttle to the clinic that I took daily for 2 months during my radiation. I was encouraged daily, not told it was pointless! My belief is that God heals us, but he gives us wise doctors to care for us and advise us. All you can do is offer to help contact a cancer clinic for him and pray for a miracle, which is what I got. I pray that he gets one too. I'll be praying for wise decisions. MaryAnneKA

    I'll say it again and not apologize for it....her cousin needs to do what HE wants....and no doctor or clinic is going to discuss his specific case with ANYONE unless her cousin gives his permission. Let the man make his OWN decisions.
  • Unknown
    Unknown
    #9
    This comment has been removed by the Moderator

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