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post deleted and for now Member reported and blocked from posting...

PET scan revealed no active cancer anywhere in her body.  Nothing lit up, not even the old tumor.  Next task is to get rid of this "lung specialist".

needs to get the Water up at the very least ... Dehydration is a partial couse of this I think.... and is treatable at hospital with lots of fluids....  She should be eating whenever hungry.. not set

Tom;

 

Thank you for your reply.

 

My sister only had chemo and radiation because they felt with my sisters age, the location of the tumor, and her other conditions (heart disease, severe rheumatoid arthritis, C.O.P.D.) she would not survive the surgery.

The two "patchy" areas have actually been noticed on CT scans since her first CT scan after treatment ended, so since March of this year.

 

These patchy areas didn't cause any symptoms though until about a month and a half ago. It started with occasional shortness of breath with exertion. It got to the point about 3 weeks ago where she couldn't take 20 steps without having to stop and rest for a minute. Her other symptoms were occasional productive cough with yellow sputum, fatigue, feeling dizzy when she stands up, and pain (mostly in her back) when she took a deep breath. On July 14th the CT scans showed that the patchy areas became "more pronounced".  Her hemoglobin also went down to 9.3 and she looked pale so they gave her a unit of blood. It helped give her color in her cheeks but did nothing to help her breathing. However, at one point, after the transfusion she was even short of breath at rest. However, through it all, her O2 saturation is always at 94 or above and when they listen to her lungs they sound clear. Go figure...

 

What did help her breathing is when her prednisone was upped to 40mg a day (one week ago). She still gets short of breath with exertion but she can walk more than 20 steps before she has to rest. 

 

Without exaggeration, in the past month she has had 22 blood tests (this is the number of tests they ran, not the number of blood draws), 3 chest CT scans, 2 chest x rays, and 2 types of antibiotics and her Oncologist and Lung Specialist have no clue what it is. Her Oncologists Physicians Assistant thinks it is scar tissue from radiation. There are only two areas on the CT scan (according to the lung specialist) one at the top of the left lung (near the tumor which has remained stable) and one at the bottom of that lung.  So I guess I was mistaken about the number of patchy areas.

 

My sister was on a chemo drug for her arthritis called Methotrexate and it probably lowered her counts during treatment. Her Rheumatologist thinks that is what caused these patchy areas but everyone is literally just guessing. The Rheumatologist took her off of Methotrexate (which she has been taking since 2003). As a friend of mine brought up, its not like we went to some third world country so its odd that nobody knows for sure what this is. They have to figure that out I imagine before they can treat it.

 

They want to do a bronchoscopy to biopsy it but because the Lung Specialist she saw was such an idiot she wants to wait till the head guy returns from vacation and let HIM do the procedure.  She doesn't seem to be short of breath when she sleeps (she does snore but always did) but by the end of the day she is exhausted.

 

They did do an "experiment" by taking her blood pressure both sitting and standing. Her BP went down when she stood up but nothing more was pursued. I told her to contact her heart specialist to see if her meds may be causing this low BP. Low BP can also cause shortness of breath so she will be calling him tomorrow.

 

She sees her oncologist next Friday. I have offered to take her to the ER but she says no. If she gets back to a point where she is short of breath even at rest, I will simply force her to go.

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BlueWolf,

 

Now I understand.  Her sustaining problem is shortness of breath on minimal exertion despite a O2 saturation above 90%.  Also noted are complications of Heart Disease and COPD.  The latter might be driving the problem with the added complication of the patchy areas.

 

You reported snoring as a symptom.  Might she have a sleep apnea?  My pulmonary medicine doc said my use of a CPAP for apnea was helping with O2 counts.  Your sister might not even need a sleep study to get a prescription for a CPAP machine.  If you get one, buy one on line (they are far less expensive) and buy a nasal pillow mask.  I've found CPAP-Supply.com to be a good online source.  You'll need a script for your first order but your GP or any doctor, even the oncologist, can provide that.

 

Is she using O2?  Doctors have told me O2 is in my future because I also suffer from shortness of breath on mild exertion and as I get older, it gets more pronounced.  I've only got about 40% lung function and in the summer I get asthmatic symptoms that make breathing difficult. 

 

Stay the course.

 

Tom

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by all means if O2 drops below 85 go to ER !!! organ damage and failure starts to occur below 86 as I recall being told so... and a Dr can not do much for it except tell you go to ER for treatment..

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OMG today the lung specialists office called and wanted to do another chest x ray....really?  2 chest x rays and 3 chest CT scans weren't enough to diagnose this? Wow! We said no! We did consent to a pulmonary function test but it seems to me that these people are just killing time, making it appear as if they are doing something when they really are not. 

Another of her specialists called today to complain that her kidney function isn't right (contrast dye supposedly messes that up and shes had it 3 times in a month now) so SHE wants to do more blood tests for kidney function.

Her symptoms are: Shortness of breath upon exertion (helped somewhat by the 40mg of prednisone), low blood pressure, dizziness when standing, and pain when taking a deep breath.

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  • 2 weeks later...

Just so everyone knows, and for future reference, my sister was diagnosed with Acute Pulmonary Pneumonitis which is scarring from the radiation that can form up to a year after radiation treatment to the chest ends. This can happen to both breast and lung cancer patients who are treated with radiation.  Her treatment will be 40mg of prednisone for a month or two then slowly tapering down to a small 2.5mg maintenance dose. 

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I think that my sister having a lung specialist is a huge mistake. He has her on 40mg of Prednisone and she developed a muscle weakness/nerve problem called foot drop. She ended up falling (without serious injury) 3 times. When we tried to send him email through the clinics email address we got his staff members who told her that the doctor was a pulmonary specialist and she should go to her Primary Doctor. Then their office completely ignored her questions, even when she called them. I finally got pissed off and wrote them an email saying that I found it "despicable" that they were trying to pawn her off on another doctor when its the med that he prescribed that was likely causing the problem. 

He finally called her back and told her it wasn't the prednisone and that she needed to contact her oncologist for a brain scan and she obviously had "brain mets".  

We spoke to the Oncologist the next day who assured us that it was simply this foot drop and ordered physical therapy for her. The whole thing didn't sit right with me so I ordered copies of her medical records for the last year and saw that after seeing her once the pulmonary dr.  wrote down that she had Stage IV lung cancer. This is NOT a typo as it is listed 3 times in the doctors notes. 

The initial oncologist (who is now retired) staged her at IIb and nothing was ever told to us about changing the staging of her lung cancer and is part of the pulmonologists notes only. 

Friday she had her 4th chest CT scan in 4 months and now the pulmonologists PA says everything looks "better" except for a " small 12mm size spot next to what is left of the tumor on her left lung" and they ordered a PET scan for this Thursday. Now they also want to start weaning her off of the Prednisone as of today (even though they didn't change a thing when she was falling).

The Pulmonary Dr seems to want to play Oncologist. We are seeing the Oncologist tomorrow afternoon and I am so angry I cant even think straight. We will ask her what the results of the CT scan were and then I plan to hit her with the crap the pulmonary guy is saying she has stage IV cancer and ask what the hell is going on. 

Thoughts?

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Oh my!  I'm not a doctor but my mother had congestive heart failure, severe rheumatoid arthritis, and COPD.  Thankfully not cancer.  She had circulator problems and these led to neuropathy symptoms like your reported foot drop.  The reason our doc gave was mom would sit long periods and her weight would compress nerves against bone causing a temporary neuropathy.  Mom would also get Prednisone particularly when she had a bad chest cold.

 

​No doubt there is a lot going on and a lot of doctor opinions floating around.  I'd find a single doctor I'd trust and try and get and understanding of the complex symptoms.  My general practitioner (GP) is the quarterback of my health care team.  He gets all the reports on tests ordered by various specialists, knows me, and I trust him.  If it were me or my mother (sadly she passed in February just after her 88th birthday), we'd lay this all out to our GP.

 

It sounds like you are getting lots of confusing advice and putting the ball in a single doctor's hand might yield a reasonable explanation of symptoms and relief.

 

Stay the course.

 

Tom

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She will be getting the PET scan the day after tomorrow with results on Friday.  The Oncologist says these small "opaque" areas come and go. I know cancer doesn't do that but the Oncologist says she too wants to know if these areas "light up" or not because she has no clue what these things are. I too wish we could stay with one doctor but it seems that, with this clinic, every time a new symptom crops up another specialist gets a referral. The lastest is that none of her usual doctors want to prescribe her pain med so their solution is to refer her to a pain clinic. Hence another specialist.  Too many specialists!  We did get 1 thing settled. Her cancer is a stage 3A. I'll post the results of the PET scan Friday night. Thanks everybody.

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  • 2 weeks later...
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  • 4 weeks later...

She seems to be doing okay and is down to 10mg of prednisone and holding. I don't think she will ever be able to go to a lower dose than what she is on now. She complains of numbness and tingling in both hands and feet and the Oncologist believes it is due to the chemo meds she recieved. She will be getting her first CT scan of the year on Febuary 1st, so here's hoping that its a good year.

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  • 2 weeks later...

Latest Chest CT shows a "slight increase" in the size of the tumor so she will be getting yet another PET scan on April 14th with results the next day.  I don't understand this because her Nov 2015 PET scan showed NO activity at all. She did however have the start of a chest cold the day the CT was taken. So she's now on antibiotics to treat possible pneumonia. And yes she does have post chemo neuropathy but proved to have an allergy to the med they usually use to treat it. 

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  • 2 weeks later...

Has anyone's lung cancer recurred? if so what were the symptoms?  :cry: The following is the result of the CT scan from 2/1/16

 

IMPRESSION:
1. Spiculated mass posterior aspect right lung apex. Based on CT criteria,
this appears to have slightly   increased in size when compared with prior
study and is worrisome for possible metastatic disease/second focus of
tumor.
2. Extensive pleural and parenchymal changes in the left upper lung field
consistent with the patient's history of left lung cancer. Overall,
thickening involving the left lung apex has significantly increased when
compared with the prior study. The previously noted mass/soft tissue
density involving the anteromedial aspect of the left lung field, which
appears to possibly invade the anterior mediastinum and anterior chest
wall, is similar to prior studies.
3. Small pericardial effusion. The overall amount of fluid surrounding the
heart appears to have slightly increased when compared with previous study
and clinical correlation is advised.

 

She is scheduled for at PET scan on 4/15/16. Should she be insisting on getting this done sooner? Last PET was in November of 2015 and everything came back fine. 4 months later this happens. 

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Unfortunately my cancer returned - three times.  I had no symptoms.  In my active disease treatment, I recall many scans that had words like those you've posted.  In those days, I was getting CT scans every other month.  I've had PET scans with questionable findings.  Inflammation in the plane of my chest incisions that was reported as active metastatic disease.  We waited several months and repeated the scan.

 

Unfortunately lung cancer is persistent.  I don't know that insisting on an earlier scan would clarify the situation.  Actually an early PET might lead to more confusion.  

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