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CAt scan results 3 months after SBRT

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

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.

ConnieSW's picture
ConnieSW
Posts: 1407
Joined: Jun 2012

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's picture
Shell bug
Posts: 76
Joined: Nov 2011

Excellent news! This truly makes me happy.

AWK
Posts: 364
Joined: Mar 2013

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's picture
HellieC
Posts: 524
Joined: Nov 2010

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's picture
NoTimeForCancer
Posts: 2521
Joined: Mar 2013

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

 

artist49
Posts: 87
Joined: Oct 2011

Wonderful news! Your story is a beacon of hope

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

Stabler
Posts: 51
Joined: Feb 2013

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

Debbie

Kaleena's picture
Kaleena
Posts: 1910
Joined: Nov 2009

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's picture
Ro10
Posts: 1579
Joined: Jan 2009

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's picture
Kaleena
Posts: 1910
Joined: Nov 2009

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's picture
Ro10
Posts: 1579
Joined: Jan 2009

 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's picture
ConnieSW
Posts: 1407
Joined: Jun 2012

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

Double Whammy's picture
Double Whammy
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Joined: Jun 2010

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's picture
Abbycat2
Posts: 639
Joined: Feb 2014

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
Posts: 364
Joined: Mar 2013

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

HellieC's picture
HellieC
Posts: 524
Joined: Nov 2010

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's picture
Ro10
Posts: 1579
Joined: Jan 2009

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
Posts: 96
Joined: Nov 2011

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

It happened to Me's picture
It happened to Me
Posts: 203
Joined: Apr 2014

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

elpasorudy's picture
elpasorudy
Posts: 84
Joined: Jan 2013

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

 

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

My cough was better while I was on the "medrol- dose pack".  But after I was off of it my cough returned very frequently again, especially at night.  I still have wheezing when I lay on my right side, too.    I called my onocologist in Illinois.  He reordered my codeine cough syrup, but recommended I go to ambulatory care to make sure nothing else was going on.  So Saturday I was at Ambulatory care for 3 hours.  At least the doctor did order a much higher dose of Steroids.  He ordered  Prednisone 60mg for 5 days, then 40 mg for 5 days and then 20 mg for 5 days.  He said that medrol dose pack was like putting out a camp fire with a squirt bottle.  He also ordered an inhaler for the wheezing.  He also gave me an antibiotic in case I start having green drainage.  I felt  he gave me what I needed.  I just hope it works.  He said if it does no work, they should do another CAT scan to see how it compares to the one the first of January.  I am thinking of seeing a lung doctor if it does not help.  This doctor mentioned that the radiation pneumonitis can lead to pulmonary fiborosis which is not curable.  I had read that on the internet, too. 

I went to my onocologist down here.  He said my cancer was progressing slowly because of the slight increase in the CA 125, and the increase in the size of the para aortic lymph node.  He recommended a repeat CA 125 in 3 months.   He said he did not think I needed a CAT scan, but the radiation onocologist wanted another CAT scan 6 months after I finished the radiation.  I have a CAT scan scheduled in IL on April 8th, so we will return to Quincy the first part of April. 

My husband asked if there was anything new for UPSC since I had my last treatment.  He mentioned Avastin as not being as harsh a chemo as some of the others.  But he said it increases the risk of blood clots.    Then he asked if I ever had any blood clots, and I said yes I had multiple bilateral blood clots in my lungs.  Then he remembered that.  So that is not an option for me.  so he said the taxol/cisplatin would be the drugs of choice for me. 

Have had two of my sisters visiting for a week, and have a friend coming for a week, so I have not been posting.  You all remain in my prayers every night.  You are a special group of ladies.  In peace and caring.

 

AWK
Posts: 364
Joined: Mar 2013

Ro, I wish your journey would ease up for you and am sending you prayers for that.  I also wish you were a candidate for Avastin, in my case it keeps me stable which is my new normal.  And it is very manageable compared to chemo.  I am off to my 8th round tomorrow of it and now my goal is to live with this and fully live.  I am glad you are having visitors and hope you have a relaxing time with them.  And that your coughing subsides so you can get some much needed rest.  

Sending many hugs, prayer and love to you and all.  Anne

molimoli
Posts: 514
Joined: Aug 2014

Ro10  You are in my thoughts.When I converse with the creator [or the idea of a creator] I ask for devine intervention  for all of us, I hope such a thing is possible, if not,  I took the liberty of letting the creator know that  we will settle for strength,courage  and the will to keep on fighting and living the best possible life now.    I  am sorry you are currently  on such a bumpy road, please Imagine us there behind you bracing  against the wind. Close your eyes and feel us there Ro. 'cause we are.

We all  LOVE and THANK YOU  for  your warm welcome  and info. when we  rolled into this site  as NEWBY TUMBLE WEEDS. I thank you for the stability your informitive postings  brought to my pained soul.  my heart was bleeding then , I am ok now  Thank You and all the other ladies that saved me from  myself .

Much luck with the new meds.                                                                              NUFF NUFF LOVE. moli

A pleasant and healing week to all.

 

 

nempark
Posts: 683
Joined: Apr 2010

Nuff is a word we used when I was growing up in one of the British countries.  I love it. I wish you nuff, nuff success and nuff peace in your journey.  You always bring a smile to my face.

nempark
Posts: 683
Joined: Apr 2010

 ITHINK OF YOU ALL THE TIME.  MAY YOU HAVE PEACE!!!!

Abbycat2's picture
Abbycat2
Posts: 639
Joined: Feb 2014

Ro, you are in my prayers as well.  I am pleased to hear how much shrinkage as happened to the lymph node.  I hope the new meds will help with your wheezing and coughing.  Enjoy the visit with your sisters and friend! 

Warmly,

Cathy    

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

I have had four nights where the cough did not wake me up.  My wheezing is almost gone now, too.  I havenot needed the inhaler for several days.   I have only taken my codiene cough syrup at bedtime.  Have not had the cough pill for those nights either.  I am half way through my prednisone prescription.  I hope the cough stays away when I get off the prednisone.  

Have been enjoying the company.  The gift of friendship is quite a gift.  It has been in the 60's and 70's, much nicer than the snow in the Midwest....and the Northeast!

hope you all had a good weekend.  Thanks again for the thoughts and prayers.  They are much appreciated.  In peace and caring.

Kaleena's picture
Kaleena
Posts: 1910
Joined: Nov 2009

So glad to hear that your cough is subsiding.  Also that you are enjoying your company.   I am from the Northeast so we have been having snowy and wet weather here.

Will continue to keep you in my thoughts and prayers.

My best to you.

Kathy

Abbycat2's picture
Abbycat2
Posts: 639
Joined: Feb 2014

I have gotten to know many of the women here and feel that you are part of my extended family. How are you doing , Kathy? How extensive is the surgery to get your stent replaced? Darn, I hate what cancer treatment does to us. Hopefully , the cars each family member owns are in good shape. How is your Mom? I have noticed that you are posting on other ACS boards. I , too , have branched out and read/post on other boards as well.

 I hope you are doing well, Kathy!

Cathy

 

 

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