Shortness of breath

[jack14]

A couple of weeks ago,  I began experiencing severe shortness of breath after doing minor tasks. When I saw my oncologist for our checkup, I was out of breath just from walking from the waiting room into the treatment area. About thirty or so feet. The nurse took my vitals, and my oxygen sats were 87%! I know that when you hit 88 they begin thinking about supplemental oxygen!

A few minutes later, my oncologist confirmed that. After getting a history of this recent development, and listening to my chest, she said it could be a pulmonary embolism. I know about those, and they are often fatal. Anyway, it was close to closing time but they all stayed and  put me in a wheel chair and rolled me to radiology where they did a CT scan. 

Everyone waited patiently for near an hour with me while we waited to hear what the radiologists opinion was. During this wait, I had a. wonderful chat with my oncologist and she pulled up the scan on the monitor in the treatment room and told me what she thought. She said that the radiologist who was about twenty five miles away from our location had a much better monitor with higher resolution. There also was a second monitor next to it to compare my previous scans to.

IMPRESSION:
1. No pulmonary embolus
2. Multitocal ground-glass opacities throughout both lungs, new from
prior exam. There
is some consolidative opacities in the right lower lope, -images are most consistent with multi focal pneumonia.
3. Small pilateral pleural effusions
4. Unchanged 9 mm rant apical nodule, The additional previous
pulmonary nodules are obscured y airspace disease on prior exam.
3. Decreased size or left axillary soft tissue masses

So, she prescribed 500 mg azithromycin daily for fourteen days. And I will get a second blood test ( CMP) next week because my liver numbers are high. She discontinued a med I have been taking to elevate my testosterone level. I had attributed my fatigue and shortness of breath to my abnormally low T level. It was 77 and the low is 300. It was 430 last month?

[LouT]

Jack,

I'm  so sorry to hear about these new symptoms.  After reading your post I tried to increase my knowledge on GGO's and found a number of references to pneumonia and particularly Covid19.  Did they test you for the virus?  I'm also glad to see that the nodule you did have has not changed.  My prayer is that your meds kick *ss and clear this pneumonia out of the ring.  Please keep us updated.

Lou

[Tom Galli]

Jack,

Thanks for the report. Indeed shortness of breath for our community is a very significant consideration. I'm relieved to know your cause is not progression.

Stay the course.

Tom

[jack14]

On 3/14/2022 at 7:38 AM, LouT said:

Jack,

I'm  so sorry to hear about these new symptoms.  After reading your post I tried to increase my knowledge on GGO's and found a number of references to pneumonia and particularly Covid19.  Did they test you for the virus?  I'm also glad to see that the nodule you did have has not changed.  My prayer is that your meds kick *ss and clear this pneumonia out of the ring.  Please keep us updated.

Lou

Thanks Tom. Covid was ruled out by history of present illness, and signs and symptoms.

[jack14]

22 hours ago, Tom Galli said:

Jack,

Thanks for the report. Indeed shortness of breath for our community is a very significant consideration. I'm relieved to know your cause is not progression.

Stay the course.

Tom

My Oncologist didn’t rule progression as being out per se’ 

[Karen_L]

Isn’t ground glass also associated with pneumonitis? It was for me. I needed a boatload of steroids to calm that down.

[jack14]

On 3/16/2022 at 12:36 PM, Karen_L said:

Isn’t ground glass also associated with pneumonitis? It was for me. I needed a boatload of steroids to calm that down.

I had an abdominal CT scan Monday and the radiologist said “There is extensive, new fibrotic change in the right lung base,of uncertain nature, possibly related to lung cancer therapy or alternately sequelae of prior infection or inflammation. Considerdedicated imaging of the chest to further evaluate.”

[Tom Galli]

Jack,

I know well those "possibly related to..." scan reports. I'm rooting for prior infection or inflammation.

Stay the course.

Tom

[jack14]

13 hours ago, Tom Galli said:

Jack,

I know well those "possibly related to..." scan reports. I'm rooting for prior infection or inflammation.

Stay the course.

Tom

My oncologist is starting me on a two week prednisone regimen. She suspects that it’s related to medication.

[jack14]

She also said that she didn’t believe that it’s cancer that’s causing these pulmonary issues. She added the she has seen it before in patients who were on Keytruda.

[jack14]

Anyway, she wants me on home supplemental oxygen. When I’m sleeping and for daily use as needed. I should have asked her why nights but I didn’t. Wonder why? I don’t believe that I have any sleep apnea, and I don’t have any trouble breathing when I lay down. Anyone have any ideas as to why? My resting oxygen sats run 92-94%. Before I started Keytruda my sats average 98-100 %. 

Also, I’m waiting for a VA home visit oxygen needs evaluation. Has anyone had one of these, or know someone who has? What can I expect? Sure hope it’s not involving any arterial blood gas draws. How about you Tom?

 

I 

[Karen_L]

Have you considered consulting a pulmonologist? Our oncologists are well-versed in attacking cancer, and even though they see medicine-related side effects, a pulmonologist offers different, more focused diagnoses and treatment options. 

My oncologist first started me on steroids for pneumonitis caused by medicine-- an immunologic, durvalumab-- but my pulmonologist did more testing, got a clearer sense of the scope of the inflammation (pneumonitis), and found a pulmonary embolism to boot. (I hit the jackpot that day.) My treatment amped up considerably from there. 

Hang in.

Karen

[jack14]

On 3/26/2022 at 1:45 PM, Karen_L said:

Have you considered consulting a pulmonologist? Our oncologists are well-versed in attacking cancer, and even though they see medicine-related side effects, a pulmonologist offers different, more focused diagnoses and treatment options. 

My oncologist first started me on steroids for pneumonitis caused by medicine-- an immunologic, durvalumab-- but my pulmonologist did more testing, got a clearer sense of the scope of the inflammation (pneumonitis), and found a pulmonary embolism to boot. (I hit the jackpot that day.) My treatment amped up considerably from there. 

Hang in.

Karen

Thank you. fortunately I am still improving. I will request a pulmonologist if I feel a need. I have seen several over the years and had numerous pulmonary function tests. I also have emphysema and has steadily worsened over the years. I am under the VA and they are slow. I have been waiting for authorization from the oxygen people for over two weeks now.

 

[LouT]

Jack,

Glad to hear that you are improving somewhat.  The VA always seems interminably slow...I hope you're able to get better responses from them as well.

Lou 

[Tom Galli]

Jack,

Sorry I missed your question.

I've not had a VA oxygen evaluation home visit. My GP gave me his clinic's O2 saturation recorder with instructions to wear it while sleeping for 3 consecutive nights. When I returned the device, he downloaded the information and called reporting my O2 sat rate was dipping below 90% for periods of my sleep. Therefore, he prescribed supplemental O2. A home medical device company delivered the oxygen concentrator to my home along with all the tubing and mask. 

I asked why my O2 saturation rate was dipping while sleeping. He told me it has to do with REM sleep where I go into a higher state of relaxation and don't breathe as deeply. I've been using the concentrator for about 4 months now. I put it in our connecting bathroom and close the door at night. It's noise takes getting used to but I am feeling more lively when I wake up and conclude it works. My O2 concentrator is a rental unit and the cost is 100% covered by Medicare. I didn't go through the VA system to get the machine, but I can't imagine the VA evaluation will be anything more than determining how much connecting tubing needs to accompany the machine.

I hope this answers your questions and sorry I missed your post.

Stay the course.

Tom

[jack14]

14 hours ago, LouT said:

Jack,

Glad to hear that you are improving somewhat.  The VA always seems interminably slow...I hope you're able to get better responses from them as well.

Lou 

thank you Lou

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

[jack14]

11 hours ago, Tom Galli said:

Jack,

Sorry I missed your question.

I've not had a VA oxygen evaluation home visit. My GP gave me his clinic's O2 saturation recorder with instructions to wear it while sleeping for 3 consecutive nights. When I returned the device, he downloaded the information and called reporting my O2 sat rate was dipping below 90% for periods of my sleep. Therefore, he prescribed supplemental O2. A home medical device company delivered the oxygen concentrator to my home along with all the tubing and mask. 

I asked why my O2 saturation rate was dipping while sleeping. He told me it has to do with REM sleep where I go into a higher state of relaxation and don't breathe as deeply. I've been using the concentrator for about 4 months now. I put it in our connecting bathroom and close the door at night. It's noise takes getting used to but I am feeling more lively when I wake up and conclude it works. My O2 concentrator is a rental unit and the cost is 100% covered by Medicare. I didn't go through the VA system to get the machine, but I can't imagine the VA evaluation will be anything more than determining how much connecting tubing needs to accompany the machine.

I hope this answers your questions and sorry I missed your post.

Stay the course.

Tom

Thank you so much Tom!

[Shari C]

On 3/26/2022 at 1:45 PM, Karen_L said:

Have you considered consulting a pulmonologist? Our oncologists are well-versed in attacking cancer, and even though they see medicine-related side effects, a pulmonologist offers different, more focused diagnoses and treatment options. 

My oncologist first started me on steroids for pneumonitis caused by medicine-- an immunologic, durvalumab-- but my pulmonologist did more testing, got a clearer sense of the scope of the inflammation (pneumonitis), and found a pulmonary embolism to boot. (I hit the jackpot that day.) My treatment amped up considerably from there. 

Hang in.

Karen

Hi Karen, would you mind sharing with me how long it took for the pulmonary embolism to be addressed? My dad had one found just a few days ago and he’s been on heparin IV but is still experiencing the breathlessness.  Thanks!

[Karen_L]

Hi, Shari. 

I’m sorry to hear your dad is dealing with ongoing breathlessness.

I’m not really sure what you mean by addressed. As soon as I was diagnosed, I began treatment with a blood thinner. In that way, the condition was addressed immediately. However, I didn’t have an immediate decrease in symptoms, so the treatment did not seem to be addressing the issue as quickly as I would have liked. 

But, I was also being treated for a serious case of pneumonitis at the same time, and on a very high dose of steroids. It’s hard to know whether my SOB was due to pneumonitis, PE, both, etc., so my symptoms may not be relevant to your dad’s current situation. 

Regardless, shortness of breath is definitely something to check on with his doctor. I wouldn’t be surprised if the doctor wanted to know what your dad’s pulse oxygen level is; if you or your dad don’t have a pulse oximeter at home, the doc may want him to have it checked in the office or maybe even the emergency department at the hospital.

Even if it’s the weekend and the doctor’s office is closed, I would not wait. Call and ask the answering service to have him/her call you back. 

I hope he feels better soon.