how to monitor for radiation pneumonitis

Portal Forums Radiation Oncology Chest Radiation how to monitor for radiation pneumonitis

This topic contains 16 replies, has 4 voices, and was last updated by  kempten 10 months ago.

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January 18, 2017 at 9:27 am  #1289829    

kempten

Hello

I just finished 15 radiation treatments to my lung tumor 1 week ago . I’ve also been on Tagrisso for the past 8 months and I did continued taking it throughout radiation treatment.
I have pretty bad esophagitis now which I was aware off might happen. I also started to run a low grade temp ( 100.7 rect. ) that happens in the late afternoons and goes down in the am. I’m not taking any fever reducers or pain meds right now. ( BP low 95/56 )
I’m also experiencing shortness of breath, increased dry cough and a flue-ish malaise causing me to spend most of my day resting and/or in bed.
I have low level autoimmune disease and my immune system is chronically upregulated anyway.
As far as I can tell the symptoms I’m experiencing might suggest radiation induced pneumonitis.
My question is:

How do you monitor someone who is at increased risk of pneumonitis like me?
Apart from imaging, can you make an educated guess by doing lab work ( white blood count, sed rate …) ?
If pneumonitis is found can it be treated with inhaled corticosteroids if it’s at a low level ?
Would I have to stop Tagrisso therapy which would endanger stability of the brain ?

I made an appointment for today and will ask the doc for more stringent monitoring in my case.
I’m trying to be vigilant , keep damage to a minimum and avoid fibrosis.

Thanks for any advice
Kempten

January 18, 2017 at 3:25 pm  #1289832    
catdander forum moderator
catdander forum moderator

“Symptoms of radiation pneumonitis sometimes start during treatment, but they are more likely to occur about 1–3 months after treatment. Symptoms can include:

fever
cough
The cough may be non-productive (dry) or productive (coughing up mucus or phlegm).
The amount of mucus with the cough may increase as treatment continues.
chest congestion
shortness of breath
chest discomfort
Symptoms may go away or continue for several weeks or months, becoming a long-term (chronic) problem.

Back to top

Not specifically what yr looking for,

Treatment

Report cough or shortness of breath to the radiation oncologist or radiation therapy team. To cope with symptoms, you can:

Pace yourself and plan activities with rest periods, if you feel short of breath.
Drink more fluids and use a cool-air vaporizer or humidifier to keep the air moist.
Use extra pillows to raise your head and upper body while resting or sleeping.
Avoid going outside on hot, humid days or on very cold days. Being outdoors in very hot or cold weather may irritate the lungs.
Wear light, loose-fitting tops and avoid anything tight around the neck, such as ties or shirt collars.
Doctors may prescribe medicines to reduce congestion (decongestants), decrease cough (cough suppressants), widen the bronchial
bronchial
The large tubes, or airways, that branch off from the windpipe (trachea) into the lungs, where they branch into smaller tubes (bronchioles) that end in the alveoli (air sacs). Bronchi carry air to and from the lungs. tubes (bronchodilators) or reduce inflammation (corticosteroids
corticosteroids
Any steroid hormone that acts as an anti-inflammatory by reducing swelling and lowering the body’s immune response (the immune system’s reaction to the presence of foreign substances).). Oxygen therapy may also be needed.”

http://www.cancer.ca/en/cancer-information/diagnosis-and-treatment/radiation-therapy/side-effects-of-radiation-therapy/radiation-to-the-chest/radiation-pneumonitis/?region=on#Radiation_pneumoniti

January 18, 2017 at 3:38 pm  #1289833    
catdander forum moderator
catdander forum moderator

Hi Kempton,

While that doesn’t answer your question it does have helpful info on what can be done past steroids for pneumonitis.
I haven’t found any diagnostic info other than symptomatic. I’ll make sure one of our faculty responds, unless Jim can confirm an answer. He’s so much better at ferreting out appropriate resources.

I can only imagine the worry you must be going through in this balancing act/poker game you’re in. I hope your hand plays out in your favor.
All the very best,

Janine

January 18, 2017 at 3:45 pm  #1289834    
catdander forum moderator
catdander forum moderator

I think the following link can be of help too. I think the radiation specific info and pneumonitis caused by concurrent tki/radiation is similar with the exception of onset/timing. Unfortunately and you may know if there is pneumonitis the best and rather dyer treatment is to discontinue use of the tki. I’m betting that won’t happen!

http://cancergrace.org/radiation/2008/08/11/pneumonitis/

January 18, 2017 at 4:46 pm  #1289838    

kempten

Hello again Janine,

thank you for your reply.
I did see my onc and he and the radiation oncologist are pretty sure that I do indeed have radiation pneumonitis.
They just want to treat it as if this is the case and put me on Prednisone 20 mg 3 tabs in the am daily and see again on Monday if there is an improvement.
I had bloodwork done but they think I do not need a CT of the lung for diagnostic purposes now because I’m supposed to have a F/U CT anyway in a month from now. They admitted the pneumonitis appeared early in my case. I don’t think I have a flue or regular pneumonia but who knows?
I got all of the symptoms in the book , cough getting more pronounced and feeling quite a terrible malaise.
I’m concerned that the prednisone is going to make my radiation esophagitis even worse ? I’m in pretty bad pain and I’m not taking anything except Omeprazole prescribed today.
I feel lightheaded and dizzy and wanted to stay away from heavy duty pain mets. that could make this worse.
I am allowed to continue my Tagrisso at this point.
I think the fact that I have an underlying immune system problem ( CIFIDS) might also have made me more prone to developing this. I usually rarely get infections because the immune system is constantly upregulated and kills everything quite quickly.

Is there anything that I still should be doing . I’m eating and drinking sufficiently but with a lot of pain.

Thank you so much
Kempten

January 18, 2017 at 6:59 pm  #1289840    
catdander forum moderator
catdander forum moderator

Oh Kempten, I’m so sorry to hear this. I don’t know how steroids or pain meds would make things worse; not that they don’t I’m just not familiar with that. Steroids are the first line of defense for the pneumonitis.
Opioid pain meds not only help with pain symptoms but also help relieve breathlessness and cough.

Esophagitis can certainly be quite painful and makes eating even drinking difficult. Soft and bland are on the menu for a week or so I’m sure. There is a mixture of topical numbing and pain relieving agents called magic mouthwash that you gargle, swish, swallow that helps many people with eshophagitis. It’s compounded in the pharmacies and usually of differing proportions.

Scans are tricky to try to read after radiation at best, with so much obvious inflammation it’s easy to see why the doctors are in no hurry. They just wouldn’t be able to tell what they were looking at.

Have your oncologists read the latest on tki and pneumonitis and feel comfortable that they are more likely to help than make matters worse? I’m sure a lot of this is left up to you so I hope you’ve had those discussions with your team.

I’m keeping you in my thoughts for a speedy bounce back.
All best,
Janine

January 19, 2017 at 6:41 am  #1289845    

cards7up

Steroids should make your pain feel better, not worse. But prednisone is usually a Z-Pak. You start at a higher dose and it reduces down each day. They will also lower your immune system so stay away from germs! I think the esophagitis is what caused my cough and low grade fever and went away after 3-4 weeks and fortunately never got the pneumonitis. Take care, Judy


Stage IIIA adeno, dx 7/2010. SRS then chemo carbo/alimta 4x. NED as of 10/2011.
Local recurrence, surgery to remove LRL 8/29/13. 5.2cm involved pleura. Chemo carbo/alimta x3. NED

  • This reply was modified 10 months, 1 week ago by  cards7up.
  • This reply was modified 10 months, 1 week ago by  cards7up.
January 19, 2017 at 7:32 am  #1289849    

kempten

Thanks Judy for replying,

I think they wanted to keep the dose of the Prednisone at 60 mg daily in the am until this coming Monday when I will have a follow up appointment and make the tapering decision at this time depending how much improvement we see.

I took my first dose of prednisone this morning and I think I already feel some improvement.

Thanks Judy

Kempten

January 19, 2017 at 7:44 am  #1289850    

kempten

Hi Janine,

I’m sorry I would not know enough to make a decision on balancing the tight rope between staying on Tagrisso while being medicated with prednisone to heal my radiation induced pneumonitis and discontinuing Tagrisso that’s believed to keep my cancer at bay in other parts of the body.
Would it depend on the severity of my pneumonitis ?
I don’t think my onc knows the answer to this question.
Were could I find guidance?
What would your docs advise?

Is there such a thing as best practices in this case or do you decide case by case ?

Thanks again for your support.

Kempten

January 19, 2017 at 8:20 am  #1289851    
catdander forum moderator
catdander forum moderator

Most oncologists would discontinue use of a tki in the face of pneumonitis and most often not retry it in that patient. This is one of the statements from our faculty on the subject there are others on that thread, “To my knowledge, no one has published so much as a case report of a rechallenge in someone with clear evidence of EGFR-TKI related pneumonitis. Certainly I have never tried it myself, despite being very tempted in patients with EGFR mutations. Since we don’t really know why it happens, I don’t think I would feel comfortable in assuming it wouldn’t just happen again. Pneumonitis can potentially be fatal, and even mutants don’t achieve cure with Tarceva, so I think I would stay away.” http://cancergrace.org/forums/index.php?topic=1387.0

I hope you make sure you oncologist looks into the studies. Since the first investigations of TKIs pneumonitis showed to be a high mortality rate due to inflammation in the lungs with continued use of tki. Since then oncologists tend to quickly remove their patients from the drug. Perhaps since the radiation played to part a rechallenge after you recoup would be an option.

Janine

January 19, 2017 at 9:27 am  #1289854    

kempten

Thanks Janine,

I was so hoping I could remain on Tagrisso but I am aware of the high risk.
I did read the previous recommendations on this subject on your site .

Thanks again

Kempten

January 24, 2017 at 9:42 am  #1289893    
catdander forum moderator
catdander forum moderator

Hi Kemptem,

Checking in to say I hope you are getting better.
All the very best of hopes!

Janine

January 24, 2017 at 10:24 am  #1289894    

kempten

Hello Janine,

thank you so much for checking in.
Here is my update:

Have been on 60 mg of prednisone for the last 7 days. Also on Omeprazole . Pneumonitis symptoms have diminished nicely. Radiation esophagitis also much better, probably helped by the prednisone.

I’m still on Tagrisso.
Will see if after tapering down dose and discontinuation of prednisone symptoms return.
If that is the case will need to revisit d/c Tagrisso
I’m keeping close tabs on my symptoms.
Will have brain MRI very soon. This will also help decide if Tagrisso is actually still keeping the brain under control.

Onc was very brave not to yank Tagrisso immediately. He went against advice of others . I’m taking responsibility and will accept the results.
I think since I’m in very good overall health status , with very low genomic % and tumor burden and there are no other wonderful systemic alternatives for my brain , I wanted to give myself a little more time to decide weather d/c of Tagrisso needed to happen immediately.
Will decide soon after MRI and other variables.

What is your opinion Janine ?
I tried to make the best decision between 2 risky choices.

I really appreciate you checking in.

Kempten

January 24, 2017 at 5:55 pm  #1289897    
JimC Forum Moderator
JimC Forum Moderator

Hi Kempten,

I agree that either option is risky, but I can understand the reasons for the choice you’ve made. I think the fact that your symptoms have responded to prednisone is a good sign. I also think that it’s essential to keep a close eye on those symptoms as you begin to taper off the steroids.

You’ve made a tough decision but one that was well-informed. I hope that your symptoms continue to improve and that Tagrisso remains effective for you for a long time. Please keep us updated.

JimC
Forum moderator


Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19
4 cycles Carbo/alimta, 65% shrinkage
Tarceva maintenance
Mar 2010 progression, added Alimta, stable
Sep 2010 multiple brain mets, WBR
Oct 2010 large pericardial effusion, tamponade
Jan 2011 progression, start abraxane
Jun 2011-New liver, brain mets, add Tarceva
Oct 2011-Dx Leptomeningeal carcinomatosis; pulsed Tarceva
At rest Nov 4 2011
Since then: http://cancergrace.org/blog/jim-and-lisa

January 24, 2017 at 6:43 pm  #1289898    

kempten

Jim ,

thanks so much for responding.
I promise I will stay on top of symptoms

Kempten

January 25, 2017 at 6:39 am  #1289899    
catdander forum moderator
catdander forum moderator

Yay Kemptem!

I’m thrilled to hear you’re doing better, that’s an excellent sign. I have no opinion on the matter that counts and I don’t mean to express much more than facts and hopes, and sadness and joy,,. I think I’ve always known and definitely known since my husband was diagnoses in 09 that being the one with cancer especially stage IV nsclc and being the loved one puts you in two boats. I believe your’s is easily the worse of the 2 and I wouldn’t want to appear to judge anyone by making fact driven decisions like you when fighting to live longer and better. And yes I think your onc takes into account your knowledge base and your physical and emotional strength into account when s/he makes plans. My only opinion is of the bravery you show by learning and being a part of your care. I couldn’t be more impressed. I’m just so happy to see you and know you’re feeling better.

Always hopeful,
Janine

January 25, 2017 at 9:15 am  #1289900    

kempten

Hello Janine

As always, thanks a million for you knowledgeable support and caring thoughts.

The advice I get from you guys is absolutely invaluable.
I will keep you updated on my pneumonitis situation.

Kempten

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