Cant sleep!

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camul
camul Member Posts: 2,537
in Breast Cancer #1
Saw pain dr. Am on 100mcg Fentanyl patch now. Helps the pain, but waiting for head to get use to it. Hands are numb most of the time and pain in neck and shoulders increased. I thought hands were from neuropathy, after phys exam, she says most likely tumor activity in c-spine and clavical. Ref me to rad onco. Both pain and rads onco are with my old cancer center, and are covered under my secondary after medicare pays. New med onco is not covered and he wants all scans/tests to go thru University (where he is in the bc center at the cancer research hospital affiliated with the U) which is out of network for my ins.
He goes b tumor markers and 8weeks ago said tumors are stable, but a week later, I was at ER for pain in left leg. When I put weight on it, pain shot from calf to hip. Inthought clot, er doc thought fracture, ultra sound ruled out clot, xray showed new tumor activity in calf/knee.
Now , if increased pain and numbness is more tumor activity, then I would say I am most likely not stable, which means my last treatment/hope -- Aromasin is not working, even if markers were down.
My old onco did not use markers as he didnt think they were as accurate as how the patient was feeling combined with scans.... so what keeps going thru my head is that most likely I have failed with my last option (hope going back down), and this scares me. Yet, if I hadnt gone to this onco, I would have been out of options over a year ago.
That brings me to the radiation. I know how much it has helped me previously, but that was not on my neck which could mess with my swollowing, voicebox, or as offered prev. on oral radiation that would he systemic.
My mind is just a mumble jumble right now.
Does anyone have any input? Wish this brain had an on/off switch.
Thanks for the vent!
Carol

Comments

  • New Flower
    New Flower Member Posts: 4,294
    #2
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    Carol I am very sorry

    Pain always makes mind race to very dark places

    i will write later when I come back from radiation

    You do have options

    sending you a big hug

  • SIROD
    SIROD Member Posts: 2,194 Member
    #3
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    Trials?

    What was the first hormonal you were on that gave you a lots of months?  Why not try that, how can it hurt, some of them reboot.  Or have your oncologist see if you can get in that trial (for compassionate use), some are going on now and look very good.  You fought so hard, Carol, keep fighting.  You haven't done any trials, so perhaps it's time.

    What difference would it make to have your scans/tests done at a hospital that covers you?  I always did my scans/blood test locally and travelled out of town to see my oncologist.

    Tumors markers never worked with me and we always went by how I was feeling along with the scans. 

    I was having a lot of pain on the left side.  I had a scan that showed stable in the clavicle and scapula area but that area still hurt, yet it was stable.

    Best,

    Doris

     

  • Jean 0609
    Jean 0609 Member Posts: 2,462
    #4
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    Hi Carol!

    you are in my thoughts and prayers dear friend.

     

    xoxo,

    Jean

     

  • camul
    camul Member Posts: 2,537
    #5
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    New Flower said:

    Carol I am very sorry

    Pain always makes mind race to very dark places

    i will write later when I come back from radiation

    You do have options

    sending you a big hug

    I guess I find out Monday
    If they come up with new options. I am hoping for something! Interested in the rad onco's input also.
    You must be almost done with your rads.
  • camul
    camul Member Posts: 2,537
    #6
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    SIROD said:

    Trials?

    What was the first hormonal you were on that gave you a lots of months?  Why not try that, how can it hurt, some of them reboot.  Or have your oncologist see if you can get in that trial (for compassionate use), some are going on now and look very good.  You fought so hard, Carol, keep fighting.  You haven't done any trials, so perhaps it's time.

    What difference would it make to have your scans/tests done at a hospital that covers you?  I always did my scans/blood test locally and travelled out of town to see my oncologist.

    Tumors markers never worked with me and we always went by how I was feeling along with the scans. 

    I was having a lot of pain on the left side.  I had a scan that showed stable in the clavicle and scapula area but that area still hurt, yet it was stable.

    Best,

    Doris

     

    Doris,
    There are currently no trials here that I qualify for, I still keep hoping that I wil be around when the open the trials for immuno therapy for adv bc. My brother got into one in Ohio for the small cell lymphoma and the last email from him is that he is so far doing well on it. (he does not talk much about it, and when asked he always says he is fine, or pretty worn out), but he is really hopeful with his one.
    In Utah, insurance does not need to approve trials as a viable form of therapy for those with stage iv terminal cancer who have run out of options. Some ins carriers do recognize it, however UHC is not one of them. My new onco was hoping to get me into one, but due to coumadin and clots, I didnt qualify! There should be no reason for one of the immune ones to be denied, though.
    So I keep hoping! Monday will be the day.
    Thanks Doris, how are you doing? I am not hearing too much from you lately. Hope all is well.
    Hugs
    Carol
  • camul
    camul Member Posts: 2,537
    #7
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    Jean 0609 said:

    Hi Carol!

    you are in my thoughts and prayers dear friend.

     

    xoxo,

    Jean

     

    Thank you Jean
    and thak you for the card, you always make me smile!
    Carol
  • New Flower
    New Flower Member Posts: 4,294
    #8
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    camul said:

    Thank you Jean
    and thak you for the card, you always make me smile!
    Carol

    Hi Carol, I hope you are feeling better today

    You have not tried Faslodex injections.It could be taken alone or in combination with  Aromasin.

    MRI guided radiation therapy for small size tumors As a single high radiation dose treatment. Spine and neck are good candidates for such treatment. Please talk to your radiation oncologist about this treatment.

    In addition to patch at night I take a new Oral meds for pain generic for Norco.

    I do not understand why your new cancer center at the public university does not accept Medi Care. They should as they accept public/ government funds. Usually I do all my tests at one organization, however this university has three different locations for CT and two for PET/CT scans. Honestly I do trust this organization more than others based on my own experience 6 years ago. I understand why your oncologist has more faith in his imaging center than others places.

      Does your doctor know that insurance is an issue? Sometimes his office can figure our how to find options for you.

    hugs and keep fighting

     

  • camul
    camul Member Posts: 2,537
    #9
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    New Flower said:

    Hi Carol, I hope you are feeling better today

    You have not tried Faslodex injections.It could be taken alone or in combination with  Aromasin.

    MRI guided radiation therapy for small size tumors As a single high radiation dose treatment. Spine and neck are good candidates for such treatment. Please talk to your radiation oncologist about this treatment.

    In addition to patch at night I take a new Oral meds for pain generic for Norco.

    I do not understand why your new cancer center at the public university does not accept Medi Care. They should as they accept public/ government funds. Usually I do all my tests at one organization, however this university has three different locations for CT and two for PET/CT scans. Honestly I do trust this organization more than others based on my own experience 6 years ago. I understand why your oncologist has more faith in his imaging center than others places.

      Does your doctor know that insurance is an issue? Sometimes his office can figure our how to find options for you.

    hugs and keep fighting

     

    My onco takes medicare
    My supplemental policy, part of my long-term care does not cover the U ot the cancer research center that is part of the U. So any tests they do, I am responsible for the difference, bu my ins does cover scans at the big medicaal center, and will cover the cancer center where I use to see my onco of 12 years. So I have the scans done at the medical center, but my.new onco waants only scans from the Unicersity Hosp Cancer Center. I can see his point, except that my old onco and most of that private oncology group, came from the U/cancer reseach b4 opening their own practice. When I was diagnosed in 2002, I had to go to the University/Cancer research hospital, then insurance co. changed its affiliation here. Its just way more expensive, if it wasnt for Medicare, I would not have even had the option of seeing my new onco.
    There arenlike 2 major cancer places here, oje 'for profot, The other is the University/cancer research.
  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    #10
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    Carol...sorry to

    Carol...sorry to hear

     

    Thinking of you..

    Denise

  • New Flower
    New Flower Member Posts: 4,294
    #11
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    camul said:

    My onco takes medicare
    My supplemental policy, part of my long-term care does not cover the U ot the cancer research center that is part of the U. So any tests they do, I am responsible for the difference, bu my ins does cover scans at the big medicaal center, and will cover the cancer center where I use to see my onco of 12 years. So I have the scans done at the medical center, but my.new onco waants only scans from the Unicersity Hosp Cancer Center. I can see his point, except that my old onco and most of that private oncology group, came from the U/cancer reseach b4 opening their own practice. When I was diagnosed in 2002, I had to go to the University/Cancer research hospital, then insurance co. changed its affiliation here. Its just way more expensive, if it wasnt for Medicare, I would not have even had the option of seeing my new onco.
    There arenlike 2 major cancer places here, oje 'for profot, The other is the University/cancer research.

    Insurance issues always make treatment hard

    Carol

    sorry insurance issues makes everything more difficult and stressful 

    good luck today are you going for Scan?

    Hugs

  • sbmly53
    sbmly53 Member Posts: 1,522
    #12
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    Dear Carol,

    I am so sorry. I do hope that you will get pain relief and some sleep as well as getting all the insurance stuff worked out.

     

    sending big, warm hugs ( the kind where I rub and pat your back)

    Sue

  • camul
    camul Member Posts: 2,537
    #13
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    sbmly53 said:

    Dear Carol,

    I am so sorry. I do hope that you will get pain relief and some sleep as well as getting all the insurance stuff worked out.

     

    sending big, warm hugs ( the kind where I rub and pat your back)

    Sue

    I slept from the time I got home from doctor today.
    It will be 2 days to get back tumor markers. I explained the inurance stuff and SSDI that I have had to go thru. He would prefer I did everything ther, but understands the mess with insurance. He thinks I should have radiation if the rad onc thinks it is necessary.
    I wasnt even. out of the hospital and got a call from the blood clot team. My coumadin levels are too low again, so need to boost the meds. I am ripe for clots again.
    The med onco his thinking that pain in legs is from damaged spine, and wants to wait until we see results of marker b4 determining anything with the effectiveness of the Aromasn. I asked about a prognosis as SSDI asked me again. He said he does not know. Something is going on as hands are numb and pain increase, but hard to tell as my body is not responding according to what he normally sees. I would look healthy if I didnt have the tumors, pain, numbness, andblood issues, ie clotting issues.
    So rad onco will do mri, etc . and whatever she needs to do the radiation therapy. Ddepending on that outcome, will determine scans in Oct/Nov.
    SO in other words, I didnt learn a darn thing, other than control the pain, stay active. lol.
    Hugs,
    Carol
  • New Flower
    New Flower Member Posts: 4,294
    #14
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    camul said:

    I slept from the time I got home from doctor today.
    It will be 2 days to get back tumor markers. I explained the inurance stuff and SSDI that I have had to go thru. He would prefer I did everything ther, but understands the mess with insurance. He thinks I should have radiation if the rad onc thinks it is necessary.
    I wasnt even. out of the hospital and got a call from the blood clot team. My coumadin levels are too low again, so need to boost the meds. I am ripe for clots again.
    The med onco his thinking that pain in legs is from damaged spine, and wants to wait until we see results of marker b4 determining anything with the effectiveness of the Aromasn. I asked about a prognosis as SSDI asked me again. He said he does not know. Something is going on as hands are numb and pain increase, but hard to tell as my body is not responding according to what he normally sees. I would look healthy if I didnt have the tumors, pain, numbness, andblood issues, ie clotting issues.
    So rad onco will do mri, etc . and whatever she needs to do the radiation therapy. Ddepending on that outcome, will determine scans in Oct/Nov.
    SO in other words, I didnt learn a darn thing, other than control the pain, stay active. lol.
    Hugs,
    Carol

    Carol how are you?

    Hi Carol

    how have you been? Did you talk to your radiation oncologist?

     

    Hugs

  • camul
    camul Member Posts: 2,537
    #15
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    New Flower said:

    Carol how are you?

    Hi Carol

    how have you been? Did you talk to your radiation oncologist?

     

    Hugs

    not yet!
    I need to call med onc on Monday for the results of tumor marker, get blood taken for. coumadin levels, and most likely a chest Xray, started wheezing tonight, but we have had so much rain and dampness which is unusual. It has been in the 50's at night and 70vs -80's during the day, horrendous thnderstorms and rain almost everyday! Usuually it is so hot and dry in August. Wheezing and coughing started tonight.
    I am determined to be healthy Thursday... going to Sacramento to see my sister and lunching with Double Whammy (Suzanne). It has been 7 years since I have been there!
    Will let you know what happens with the rad onc!
    Carol
  • New Flower
    New Flower Member Posts: 4,294
    #16
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    camul said:

    not yet!
    I need to call med onc on Monday for the results of tumor marker, get blood taken for. coumadin levels, and most likely a chest Xray, started wheezing tonight, but we have had so much rain and dampness which is unusual. It has been in the 50's at night and 70vs -80's during the day, horrendous thnderstorms and rain almost everyday! Usuually it is so hot and dry in August. Wheezing and coughing started tonight.
    I am determined to be healthy Thursday... going to Sacramento to see my sister and lunching with Double Whammy (Suzanne). It has been 7 years since I have been there!
    Will let you know what happens with the rad onc!
    Carol

    Have a good time and safe trip

    Lets hope it is just a cold rainy days make you cough.

    Have fun in Northern California seeing your brother, his family and friends. Lunch with Suzanne sounds very exciting.

    Hugs 

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