CAt scan results 3 months after SBRT

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Ro10
Ro10 Member Posts: 1,561 Member

i went to the patient portal and got my CAT scan report from 1/2/15.   It said that the right paratracheal node measures 1.7 X 1.2 which previouslymeasured 3.4 X 2.7.   My previous report said the node was 4.1 X 3.6.   What great results from the SBRT.   However it also said" in the right upper lobe with volume loss suggestive of radiation pneumonitis. "  So that explains the prolonged cough.  I also have wheezing when I lay on my right side.  

I will call the radiation onocologist tomorrow to see what he recommends.  It looks like the treatment is steroids to reduce the  inflammation.  

I cannot  not get my lab report on the portal until 1/6.   I expect that it will drop some more.   I go to the gyn/ ono on the 13 th, but don't think he will address the radiation pneumonitis.

Pinky I already take Prilosec and sleep with  an extra pillow.  Thank you for the suggestion though.

I am so happy to have a reduction in the size of the lymph node.  Now if I can just get the cough resolved.   I will keep you updated on what I find out.  Helen I hope your MRI gives you good results too.  In peace and caring.

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Comments

  • ConnieSW
    ConnieSW Member Posts: 1,688 Member
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    Oh, Ro

    What wonderful news.  It is, indeed, a very Happy New Year.  Can you see me grinning ear to ear all the way up here on the NY/Canadian border?

  • Shell bug
    Shell bug Member Posts: 76
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    Excellent news! This truly

    Excellent news! This truly makes me happy.

  • AWK
    AWK Member Posts: 364 Member
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    Yay Ro!

    So glad you got some good news!  You inspire me so and I had been thinking about you all weekend.  Truly a good beginning to the year!  Be well and take care of yourself.  Hugs Anne

  • HellieC
    HellieC Member Posts: 524 Member
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    So pleased for you, Ro

    So pleased for you, Ro.  What a fabulous start to 2015.  That's a really good level of shrinkage and I think that radiotherapy can work for 6 months after the treatment ends, so it could get even smaller over time.  At least you have a potential reason for the cough.  It must be really annoying now, having gone on for so long, so I hope they can suggest some treatment to relieve it.

    Thanks for your good wishes - I am hoping for similar results.  We pathfinders must stick together and lead the way!

    Kindest wishes
    Helen xx

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,444 Member
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    So happy to hear this and so

    So happy to hear this and so happy for you, Ro! 

     

  • artist49
    artist49 Member Posts: 87
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    ct-scan

    Wonderful news! Your story is a beacon of hope

    for all of us! A very happy healthy new year.

  • Stabler
    Stabler Member Posts: 51
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    So happy for you.  What great

    So happy for you.  What great news.  As always you are in my thoughts and prayers.  

    Debbie

  • Kaleena
    Kaleena Member Posts: 2,088 Member
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    Good news on the node

    Ro:

    Good news with regard to the node.  I hope you can get that pneumonia taken care of quickly and that your coughing subsides.   Please keep us updated (as you usually do!)   Sending you hugs!

    Snoopy hugs

     

    Kathy

  • Ro10
    Ro10 Member Posts: 1,561 Member
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    Kaleena said:

    Good news on the node

    Ro:

    Good news with regard to the node.  I hope you can get that pneumonia taken care of quickly and that your coughing subsides.   Please keep us updated (as you usually do!)   Sending you hugs!

    Snoopy hugs

     

    Kathy

    Thanks for the good wishes, I appreciate them

    I called the radiation onocologist today and e- mailed the CAT scan results to them.  I told her I  still had my cough and had wheezing on the right side.  I told her that I was still taking cough pills and codiene cough syrup.  I asked her if  there was anything else I could take.   The nurse said she would talk to the doctor and get back to me.  She said the doctor would probably order some prednisone.  Unfortunately she did not call back until 5:30, and the doctor did not have clinic today, so she will talk to him tomorrow.  

    Kathy what I have is radiation pneumonitis ( inflammation of the lung), not pneumonia.  That's why they order steroids to reduce the inflammation.  The nurse asked if I had any shortness of breath, or fever.  I do not have either Just the cough.

    I did get my CA-125 today.  My last reading was 508.  The new reading is 607.  That was disappointing.  I was hoping for another drop in the number.   Maybe the inflammation in the lungs caused the increase, although I think the irritation was probably worse  before.

    So I wait another day and hope I get some relief from my coughing tomorrow.  I hope she calls in a prescription early tomorrow.  Thanks again for the thoughts and prayers.

  • Kaleena
    Kaleena Member Posts: 2,088 Member
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    Ro10 said:

    Thanks for the good wishes, I appreciate them

    I called the radiation onocologist today and e- mailed the CAT scan results to them.  I told her I  still had my cough and had wheezing on the right side.  I told her that I was still taking cough pills and codiene cough syrup.  I asked her if  there was anything else I could take.   The nurse said she would talk to the doctor and get back to me.  She said the doctor would probably order some prednisone.  Unfortunately she did not call back until 5:30, and the doctor did not have clinic today, so she will talk to him tomorrow.  

    Kathy what I have is radiation pneumonitis ( inflammation of the lung), not pneumonia.  That's why they order steroids to reduce the inflammation.  The nurse asked if I had any shortness of breath, or fever.  I do not have either Just the cough.

    I did get my CA-125 today.  My last reading was 508.  The new reading is 607.  That was disappointing.  I was hoping for another drop in the number.   Maybe the inflammation in the lungs caused the increase, although I think the irritation was probably worse  before.

    So I wait another day and hope I get some relief from my coughing tomorrow.  I hope she calls in a prescription early tomorrow.  Thanks again for the thoughts and prayers.

    Sorry about the misprint, Ro,

    Sorry about the misprint, Ro, as I was typing and just shortened it, but they are definitely two different things and I should have clarified that.   Either way, I want it to go away for you.   Glad you do not have a fever.  I hope you get your answers and much needed relief from that cough!

    My best to you.

    Kathy

  • Ro10
    Ro10 Member Posts: 1,561 Member
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    Kaleena said:

    Sorry about the misprint, Ro,

    Sorry about the misprint, Ro, as I was typing and just shortened it, but they are definitely two different things and I should have clarified that.   Either way, I want it to go away for you.   Glad you do not have a fever.  I hope you get your answers and much needed relief from that cough!

    My best to you.

    Kathy

    A couple of frustrating days

     I have had  several conversations with the nurse of the radiation onocologist.  The doctor read the report and was more concerned about a para aortic lymph node that increased in size than he was about the radiation pnuemonitis.  She wanted to know if my onocologist in Illinois would be addressing this.  I told her I was in Florida and will be seeing my Florida doctor on Tuesday.  

    The nurse called me back in the afternoon and said the doctor wanted to see the actual CAT scan disc.  He said the report did not definetly say it was " radiation pneumonitis".  The treatment would be high doses of prednisone, and he was reluctant to order that.  I emphasized my frequent coughing and wheezing when I lay on my right side.  She said she understood, but could not do anything about it.  

    The nurse told me to have the doctor here in Florida handle the CAT scan Report.  I told her he would not handle the pneumonitis.   She said he won't.  And I said NO he would not .  I did not say he is a Gyn/ono.  When I had my pulmonary embolism which was caused by Cancer he referred me to the ambultory clinic and said another doctor should handle the medicine for it.  I asked for an antibiotic for a sinus infection and he did not want to order an antibiotic for me.  He finally did since itwas a Thursday and I had chemo all day Thursday and Friday, and would not be able to see the primary care until Monday. 

    She said she would try to have the CAT scan Fed exed to them and get back to me.  She said some facilities do not always want to do that.  I have not heard from her today, so I don't know if she was able to obtain the CAT scan or not.

    Last night I had another severe coughing spell after I had already taken my cough pill ( Tessalon) and my codiene cough syrup.  After a couple of cough drops it subsided.

    I decided I would contact my onocologist in Illinois and see if he will order anything.  I tried to e- mail the  report using the patient portal, but couldn't do it.  So I called his office for an e- mail address, but he is out of the office today!  If he won't do anything, I'll call my primary.  I would just like some relief from this coughing.

    Sorry for the long post.  I am just very frustrated.  

  • ConnieSW
    ConnieSW Member Posts: 1,688 Member
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    Ro10 said:

    A couple of frustrating days

     I have had  several conversations with the nurse of the radiation onocologist.  The doctor read the report and was more concerned about a para aortic lymph node that increased in size than he was about the radiation pnuemonitis.  She wanted to know if my onocologist in Illinois would be addressing this.  I told her I was in Florida and will be seeing my Florida doctor on Tuesday.  

    The nurse called me back in the afternoon and said the doctor wanted to see the actual CAT scan disc.  He said the report did not definetly say it was " radiation pneumonitis".  The treatment would be high doses of prednisone, and he was reluctant to order that.  I emphasized my frequent coughing and wheezing when I lay on my right side.  She said she understood, but could not do anything about it.  

    The nurse told me to have the doctor here in Florida handle the CAT scan Report.  I told her he would not handle the pneumonitis.   She said he won't.  And I said NO he would not .  I did not say he is a Gyn/ono.  When I had my pulmonary embolism which was caused by Cancer he referred me to the ambultory clinic and said another doctor should handle the medicine for it.  I asked for an antibiotic for a sinus infection and he did not want to order an antibiotic for me.  He finally did since itwas a Thursday and I had chemo all day Thursday and Friday, and would not be able to see the primary care until Monday. 

    She said she would try to have the CAT scan Fed exed to them and get back to me.  She said some facilities do not always want to do that.  I have not heard from her today, so I don't know if she was able to obtain the CAT scan or not.

    Last night I had another severe coughing spell after I had already taken my cough pill ( Tessalon) and my codiene cough syrup.  After a couple of cough drops it subsided.

    I decided I would contact my onocologist in Illinois and see if he will order anything.  I tried to e- mail the  report using the patient portal, but couldn't do it.  So I called his office for an e- mail address, but he is out of the office today!  If he won't do anything, I'll call my primary.  I would just like some relief from this coughing.

    Sorry for the long post.  I am just very frustrated.  

    Frustrated

    And who wouldn't be.  Geesh!  Coughing is so exhausting and poor sleep must really be getting to you.

  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
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    ConnieSW said:

    Frustrated

    And who wouldn't be.  Geesh!  Coughing is so exhausting and poor sleep must really be getting to you.

    I'm frustrated for you, Ro.

    I have been so surprised by how many things our oncologists WON'T do.  My gyn onc told me back in 2010 that they pass us off like a baton.  They are all focused only on the area they're focused on and nothing else, it seems.  Your pneumonitis may have been caused by treatments for cancer, but it's not cancer (thank goodness).  It may depend on how large a practice you're being seen in, but if a group has an oncologist, they probably have other subspecialists for another body part. 

    Gads, I hope you get to the bottom of this.  Must be very anxiety producing.  Hope tomorrow is a better day and you hear first thing in the a.m.  When I get up on this coast and check my messages, I hope to see that someone is looking after you.

    Suzanne

  • Abbycat2
    Abbycat2 Member Posts: 644 Member
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    Ro10 said:

    A couple of frustrating days

     I have had  several conversations with the nurse of the radiation onocologist.  The doctor read the report and was more concerned about a para aortic lymph node that increased in size than he was about the radiation pnuemonitis.  She wanted to know if my onocologist in Illinois would be addressing this.  I told her I was in Florida and will be seeing my Florida doctor on Tuesday.  

    The nurse called me back in the afternoon and said the doctor wanted to see the actual CAT scan disc.  He said the report did not definetly say it was " radiation pneumonitis".  The treatment would be high doses of prednisone, and he was reluctant to order that.  I emphasized my frequent coughing and wheezing when I lay on my right side.  She said she understood, but could not do anything about it.  

    The nurse told me to have the doctor here in Florida handle the CAT scan Report.  I told her he would not handle the pneumonitis.   She said he won't.  And I said NO he would not .  I did not say he is a Gyn/ono.  When I had my pulmonary embolism which was caused by Cancer he referred me to the ambultory clinic and said another doctor should handle the medicine for it.  I asked for an antibiotic for a sinus infection and he did not want to order an antibiotic for me.  He finally did since itwas a Thursday and I had chemo all day Thursday and Friday, and would not be able to see the primary care until Monday. 

    She said she would try to have the CAT scan Fed exed to them and get back to me.  She said some facilities do not always want to do that.  I have not heard from her today, so I don't know if she was able to obtain the CAT scan or not.

    Last night I had another severe coughing spell after I had already taken my cough pill ( Tessalon) and my codiene cough syrup.  After a couple of cough drops it subsided.

    I decided I would contact my onocologist in Illinois and see if he will order anything.  I tried to e- mail the  report using the patient portal, but couldn't do it.  So I called his office for an e- mail address, but he is out of the office today!  If he won't do anything, I'll call my primary.  I would just like some relief from this coughing.

    Sorry for the long post.  I am just very frustrated.  

    You've been through so much, Ro

    Ro,

    I am so sorry to hear about your frustrating experience in getting appropriate medical Tx for your pneumonitis and the rise in your Ca-125, as well as the concern over your para-aortic lymph node. Sometimes it seems that when it rains it pours, but I am hopeful that all of your concerns will be addressed with successful medical care.  You are in my prayers, Ro. Please keep us posted.

    Warm Wishes,

    Cathy

  • AWK
    AWK Member Posts: 364 Member
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    Ro10 said:

    A couple of frustrating days

     I have had  several conversations with the nurse of the radiation onocologist.  The doctor read the report and was more concerned about a para aortic lymph node that increased in size than he was about the radiation pnuemonitis.  She wanted to know if my onocologist in Illinois would be addressing this.  I told her I was in Florida and will be seeing my Florida doctor on Tuesday.  

    The nurse called me back in the afternoon and said the doctor wanted to see the actual CAT scan disc.  He said the report did not definetly say it was " radiation pneumonitis".  The treatment would be high doses of prednisone, and he was reluctant to order that.  I emphasized my frequent coughing and wheezing when I lay on my right side.  She said she understood, but could not do anything about it.  

    The nurse told me to have the doctor here in Florida handle the CAT scan Report.  I told her he would not handle the pneumonitis.   She said he won't.  And I said NO he would not .  I did not say he is a Gyn/ono.  When I had my pulmonary embolism which was caused by Cancer he referred me to the ambultory clinic and said another doctor should handle the medicine for it.  I asked for an antibiotic for a sinus infection and he did not want to order an antibiotic for me.  He finally did since itwas a Thursday and I had chemo all day Thursday and Friday, and would not be able to see the primary care until Monday. 

    She said she would try to have the CAT scan Fed exed to them and get back to me.  She said some facilities do not always want to do that.  I have not heard from her today, so I don't know if she was able to obtain the CAT scan or not.

    Last night I had another severe coughing spell after I had already taken my cough pill ( Tessalon) and my codiene cough syrup.  After a couple of cough drops it subsided.

    I decided I would contact my onocologist in Illinois and see if he will order anything.  I tried to e- mail the  report using the patient portal, but couldn't do it.  So I called his office for an e- mail address, but he is out of the office today!  If he won't do anything, I'll call my primary.  I would just like some relief from this coughing.

    Sorry for the long post.  I am just very frustrated.  

    Hugs to you

    So sorry to read about your latest news.  Keeping you in my prayers and sending hugs.  Anne

  • It happened to Me
    It happened to Me Member Posts: 206 Member
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    I was happy to read

    the comments of the decrease in size but am disappointed at the other issues you are dealing with.   I pray that you will finally get resolution on your coughing.   You help us keep our chins up, we're encouraging you to keep your chin up. 

    You are such a trooper.

    Jeanette

  • HellieC
    HellieC Member Posts: 524 Member
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    Ro10 said:

    A couple of frustrating days

     I have had  several conversations with the nurse of the radiation onocologist.  The doctor read the report and was more concerned about a para aortic lymph node that increased in size than he was about the radiation pnuemonitis.  She wanted to know if my onocologist in Illinois would be addressing this.  I told her I was in Florida and will be seeing my Florida doctor on Tuesday.  

    The nurse called me back in the afternoon and said the doctor wanted to see the actual CAT scan disc.  He said the report did not definetly say it was " radiation pneumonitis".  The treatment would be high doses of prednisone, and he was reluctant to order that.  I emphasized my frequent coughing and wheezing when I lay on my right side.  She said she understood, but could not do anything about it.  

    The nurse told me to have the doctor here in Florida handle the CAT scan Report.  I told her he would not handle the pneumonitis.   She said he won't.  And I said NO he would not .  I did not say he is a Gyn/ono.  When I had my pulmonary embolism which was caused by Cancer he referred me to the ambultory clinic and said another doctor should handle the medicine for it.  I asked for an antibiotic for a sinus infection and he did not want to order an antibiotic for me.  He finally did since itwas a Thursday and I had chemo all day Thursday and Friday, and would not be able to see the primary care until Monday. 

    She said she would try to have the CAT scan Fed exed to them and get back to me.  She said some facilities do not always want to do that.  I have not heard from her today, so I don't know if she was able to obtain the CAT scan or not.

    Last night I had another severe coughing spell after I had already taken my cough pill ( Tessalon) and my codiene cough syrup.  After a couple of cough drops it subsided.

    I decided I would contact my onocologist in Illinois and see if he will order anything.  I tried to e- mail the  report using the patient portal, but couldn't do it.  So I called his office for an e- mail address, but he is out of the office today!  If he won't do anything, I'll call my primary.  I would just like some relief from this coughing.

    Sorry for the long post.  I am just very frustrated.  

    Grrrh!

    Oh Ro - so many issues and, as yet, no solutions - you must feel like you are playing "pass the parcel" at the moment.  I do hope you are able to get someone to help you with that cough - it must be getting you down now.

    As far as the slight raise in CA 125 - I wouldn't worry too much about that for now (easier said than done, I know!).  If there is inflammation in/around the lung, then that could explain the rise.  If you can, it may be better to try to "park" it and wait for the next test to see if it is trending upwards or not. 

    I hope and pray that you can get some relief from the cough (and someone in the medical profession to deal with it instead of passing it on!).

    Kindest wishes
    Helen xx

  • Ro10
    Ro10 Member Posts: 1,561 Member
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    HellieC said:

    Grrrh!

    Oh Ro - so many issues and, as yet, no solutions - you must feel like you are playing "pass the parcel" at the moment.  I do hope you are able to get someone to help you with that cough - it must be getting you down now.

    As far as the slight raise in CA 125 - I wouldn't worry too much about that for now (easier said than done, I know!).  If there is inflammation in/around the lung, then that could explain the rise.  If you can, it may be better to try to "park" it and wait for the next test to see if it is trending upwards or not. 

    I hope and pray that you can get some relief from the cough (and someone in the medical profession to deal with it instead of passing it on!).

    Kindest wishes
    Helen xx

    Finally am getting some new medicine for my cough

    My medical onocologist in Illinois is ordering a " medrol - dose pack" for my cough.  You take decreasing doses of the steroid each day.  I sure hope it works.  Last night I coughed from 2 to 6:00 Am.  Not fun.  Naturally my husband did not sleep either.  I took my cough pill and codiene cough syrup about 10:30.   I have not heard anything from the radiation onocologist.

    I am not worried about the increase in my CA-125.  For me that is a minimal rise.  I was just disappointed it did not drop some more.  I go to the doctor on Tuesday to see what he has to say.

    I am just wanting this cough to go away.  Maybe it will now.  Thanks for all your comments.  In peace and caring.

  • imackie48
    imackie48 Member Posts: 96
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    Ro10 said:

    Finally am getting some new medicine for my cough

    My medical onocologist in Illinois is ordering a " medrol - dose pack" for my cough.  You take decreasing doses of the steroid each day.  I sure hope it works.  Last night I coughed from 2 to 6:00 Am.  Not fun.  Naturally my husband did not sleep either.  I took my cough pill and codiene cough syrup about 10:30.   I have not heard anything from the radiation onocologist.

    I am not worried about the increase in my CA-125.  For me that is a minimal rise.  I was just disappointed it did not drop some more.  I go to the doctor on Tuesday to see what he has to say.

    I am just wanting this cough to go away.  Maybe it will now.  Thanks for all your comments.  In peace and caring.

    Ro, so sorry

    Ro, I'm so sorry to hear about your pneumonitis and your terrible cough, it's so good your Illinois dr to help you out. Hopefully the Medrol pack will do the trick. 

    i too am still having problems with my digestion problems, I take a drug that I get from Canada called Domperidone which helps the stomach to stimulate the nerves move the food out of the stomach, all this from the chemo I received in 2012, it's one of the side effects, it damaged the lining and mucosa in my stomach.. It didn't happen right away, when stress was added to my life, it caused my stomach to produce a aboundance of acid, causing severe gastritis.  I was on for 7 months, it's stronger than Plilosec. We don't releive all the bad side effects from chemo and radiation right away. 

    i hope you get some relief from that cough, and start enjoying your time at your winter home in Florida.  Enjoy the warm sunny weather, cause this cold weather here is very depressing.

    I'm still unable to travel to Florida with my condition as it is now.

    please keep us posted,

    love and caring, Irene

  • elpasorudy
    elpasorudy Member Posts: 84
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    Thinking of You

    You don't need the frustration. Take it a day at a time. Wishing you the best.