9mm lung nodule and lytic rib lesion

Portal Forums Lung/Thoracic Cancer Work-Up/Staging of Lung Cancer 9mm lung nodule and lytic rib lesion

This topic contains 113 replies, has 6 voices, and was last updated by JimC Forum Moderator JimC Forum Moderator 1 month, 2 weeks ago.

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February 12, 2016 at 11:50 am  #1272957    
catdander forum moderator
catdander forum moderator

Hi Cheryl,

I’m so sorry your husband is having these panic attacks though I can certainly understand them. I’ve not heard specifically about panic attacks on this site. A doctor who specializes in panic attacks will be the best person to help him find most appropriate way in which to combat them; there are other meds that can be tried.

Best of luck,
Janine

April 14, 2016 at 8:26 am  #1273588    

Cheryl3700

Update Apr-2016. Hubby is back to outpatient chemo. Hrs had 24 folfox. Still struggling with severe panic attacks only the day after chemo. Klonipin not helping. No cancer pain, no trouble swallowing. Chemo keeping him exhausted and tough to eat. Has lost 35lbs in the year.

I always look at the scans, I measured esophagus at 43mm before chemo, every scan after chemo was about 31mm to 33mm. Up to feb-16 scan, I see a jump to 38mm, confused why report says no significant change and still stable disease. I use the super thin 1.0 slices and find the same slice by using surrounding artifacts.

Additionally I look at the rib mets, can clearly see huge activity in pre chemo scan, almost all white bone in later scans until feb-16 one, now seeing dotted patches in rib.

Will ask onc why report says no changes when I see changes. But was curious, would progression only be documented if they see progression when comparing latest scan to original ones? Or would they report progression when comparing last scan to current?

Thanks for listening.

April 14, 2016 at 8:59 am  #1273591    
JimC Forum Moderator
JimC Forum Moderator

Hi Cheryl,

The comparisons should be made between the current scan and the next previous one, since it’s possible to get shrinkage originally, then progression later. The only way to judge that is to compare the two most recent scans.

I hope you can get some reassuring answers from your husband’s oncologist.

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

May 13, 2016 at 9:17 am  #1274032    

Cheryl3700

Update May 2016. Hubby doing OK physically, very tough mentally. 26 chemos down, no end in site is taxing.

Latest issue was infusion center getting his meds wrong twice in a row. First they forgot his zofran premed and he ended up reacting during infusion. Next time they overdosed his steroids, giving him dexa after he just took 60mg prednisone. Then more prednisone 2 hrs in. Unfortunately I was out of room both times, once was down with soc worker and the other down at cafe. What is scarey is that he doesn’t know to question these things. I need to give him a checklist of meds to follow. They did install a new computer system at hospital and I can see clearly that it’s very difficult to use but when it compromises patients meds, then something needs to be done.

Still getting panic attacks day after chemo. Still very odd that they only happen day after. We think steroid induced. Klonipin not preventing them. Ugh

Noticed hubbys ALP keeps rising, started 90-100 is now over 300. Has never reduced, reading the things that can mean and like anything else it’s all over the place.

Next scans after chemo #28.

June 24, 2016 at 6:31 pm  #1274477    

Cheryl3700

Update June 2016, 28 folfox chemos down. Increasing difficulty swallowing. Scans were done Wed this week. I’m seeing further progression of esophagus diameter. Also something new, a new 1cm met to liver with a faint hint of possible another smaller one. 8 weeks ago there was nothing there. Waiting for official reports online and to talk with our oncologist.

June 24, 2016 at 8:46 pm  #1274480    
JimC Forum Moderator
JimC Forum Moderator

Hi Cheryl,

I’m sorry to hear your latest report. I hope that you can have a productive meeting with the oncologist, and that an effective treatment plan can be developed.

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

June 25, 2016 at 1:53 pm  #1274484    

Cheryl3700

Thanks Jim, official report in, there are 3 1cm mets to liver. However they still say esophagus is no significant change, which I continue to be baffled about. In Dec it measures 36mm across, now in June it’s 48. Anyways now waiting for Wed appt with onc.

July 1, 2016 at 4:10 am  #1274553    

Cheryl3700

Moved onto Taxol/Cyramza, had first infusion this week. I guess only time will tell how his EC cancer responds to this. I read about the Rainbow clinical trial and this combination was better than Taxol alone, but all the numbers were disappointing.

I had a question of what does ORR (overall response rate) mean in a study? It was 28%, does that mean percentage of patients where the tumors actually shrunk? Versus stayed stable? Because then later on in the study it said disease control rate was 80%. TTP at 5.2months.

I’m still a bit confused on one fact, I saw progression in the scans starting Feb, each written report however stated “no significant change”. I asked after April scan about this and was told the radiologists have poetic license. It wasn’t until this scan in June, that finally the chest CT report stated the increase in esophagus tumor of about .5 cm increase measured in 3 diff areas and conclusion was increased tumor size. However the abdomen CT report still said “no significant change”. I would think that 2 reports from scans taken on the same day should have the same conclusion. This actually scares me a little. Seems to me the radiologist should simply report sizes of what they see every time and let the Onc decide what is significant. But I’m not a radiologist or a Dr, just wondering should he have been moved onto a diff Chemo sooner and we would not have liver mets right now. Who knows.

Thanks.
Cheryl

July 1, 2016 at 7:33 am  #1274554    
JimC Forum Moderator
JimC Forum Moderator

Hi Cheryl,

Sometimes these terms such as “overall response rate” are use differently by various writers. “Response rate” usually refers to tumor shrinkage of at least a certain specified percentage, and “overall response rate” may also include lesser percentages of shrinkage and stable disease, while “disease control rate” would include all three. Based on the percentage quoted in the study, the authors were probably using ORR in the strictest sense, that of shrinkage of a specified percentage.

Radiologist’s reports can differ quite a bit, especially when a tumor is not spherical but more irregularly shaped, and decisions must be made about exactly where to measure it. It’s usually best if the radiologist reports dimensions and, if he/she wants, make a statement about whether the change is significant or give their impressions about what a finding represents, but the decision about what represents progression warranting a treatment change is always up to the oncologist.

Good luck with the new treatment regimen.

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

July 1, 2016 at 8:00 am  #1274555    

Cheryl3700

Thanks so much Jim, so this means it has a good 80% chance to at least keep things stable, but only a 28% chance to reduce things. One day at a time right now. Have a good July 4th weekend.

July 1, 2016 at 8:19 am  #1274556    
JimC Forum Moderator
JimC Forum Moderator

Hi Cheryl,

This post from Dr. Weiss may help put this in perspective:

“Generally, the three major measures of tumor control are response rate, PFS (progression-free survival) and OS (overall survival). Measurements of side effects are at least equally important.

The relationship between RR, PFS and OS has changed over time and opinions on the “best” measure have also varied. Traditionally, new drugs were approved by response rate. Back when carbo/taxol was still THE standard of care for NSCLC, it was approved on response rate. RR measures the % of patients who have at least 30% shrinkage of their cancer. But is it the most important measure for all, or even most patients or is it a so-so surrogate for other things that matter more?

I believe that only two factors really matter—duration of life and quality of life. Traditionally, the drugs that had the highest response rates had the most activity against cancer. By controlling cancer growth, they improved duration of life. Similarly, while cancer drugs have very significant side effects, lung cancer is so brutal that they improved quality of life by stopping cancer-related suffering more than they harmed it by causing side effects. But RR was always a poor surrogate. Imagine two treatments. One is very aggressive and gives huge response rates; for the sake of the example, let’s say that the average patient has 50% shrinkage. But, patients can only take a short duration of therapy, and the responses are short-lived, say 3 months, before the cancer starts rapidly growing again.”

[continued in the following post]


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

July 1, 2016 at 8:21 am  #1274557    
JimC Forum Moderator
JimC Forum Moderator

[continued from the previous post]

“In contrast, another treatment has 0% response rate (granted, I’m picking an extreme example just to get a point across) because all patients have only 5% shrinkage. But, for this treatment, it lasts much, much longer—it’s a full year before the cancer grows again. For most patients, this second treatment would be better even though its RR is lower. The notable exception would be the patient with terrible pain not responsive to pain drugs, for which response is needed urgently to improve symptoms.”http://cancergrace.org/topic/understanding-overall-survival-and-response-rate#post-1245674

Also note that there can be shrinkage of as much as 29%, yet not qualify as a “response”.

Enjoy your holiday weekend as well.

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

July 1, 2016 at 10:34 am  #1274559    

Cheryl3700

Thanks for that additional information Jim, I can see the balancing act there. Hubby has no pain, but increased difficulty swallowing. He was given 12-18 months at beginning and it’s 15 months in, he’s sure he will expire exactly at the 18 month mark. Trying to convince him there’s not a stamp on his forehead is tough. 8 more weeks until next scan, these will be long weeks.

July 1, 2016 at 4:55 pm  #1274562    
catdander forum moderator
catdander forum moderator

Hi Cheryl,

I certainly understand the idea of wanting to convince your love that there’s no stamp after a doctor has given him one. It happened to my husband and as you can see he’s well past that. I just wanted to lend support to you. I wish I could speak for the hundreds of good idea people who’ve tried so many things. I think it comes down to getting the mind on something else. What that something else might be I don’t know. Reading aloud to one another, providing foods that go down easy, go on trips, play with the dog…The mind game cancer plays is horrifying to say the least. As for you, well I hope you have someone who can provide the same for you. And if/when it all is too much and all you want to do is scream, a moving car is the perfect place.

Keeping you in my thoughts,
Janine

July 5, 2016 at 5:32 am  #1274586    

Cheryl3700

Thanks Janine. I’ve done the screaming in my car when Mom had cancer in 2011, I know that trick. I have another question about nutrition. How do we know when its time for supplemental nutrition? Hubby finally managing to not choke/throw up a couple of things the last 2 days, but barely eating anything. Is it a certain amount of weight loss? or fatigue or blood work? He says to me he will NEVER go for a j-tube or TPN, but I think if Drs suggest it, he will change his mind. I also think it would take the pressure off him mentally of HAVING to eat. Hoping the last 2 days of less difficulty are a sign this taxol/cyramza maybe might actually help him for a while. Next dose tomorrow. Cheryl

July 5, 2016 at 6:52 pm  #1274588    
catdander forum moderator
catdander forum moderator

Cheryl,

I’m going to ask a head and neck oncologist to comment on your question about feeding tubes. As you know we don’t have expertise in esophageal cancer where the need for feeding tubes may come up more often. However if someone here knows about that it would probably be Dr. Weiss.

All best,
Janine

July 6, 2016 at 6:43 am  #1274593    

Dr. Weiss

Placement of a PEG tube is easier than it may sound. It’s a ten minute surgery with relatively low risk and rapid recovery. When it’s no longer needed, removal is an office procedure (pretty much just removing any stitches then pulling it) with the stomach healing within minutes. I’ve never had one, but my patients who have tend to look back and say that it wasn’t as big of a deal as they thought that it would be.

The tube provides access to the stomach. So, for patients who have pain swallowing or mechanical troubles swallowing, it allows for nutrition to be given. For these situation, PEGs can be great–it’s hard to have good energy or to recover well without nutrition. When the problem with eating is more nausea, PEGs are only a little better than eating by mouth as food is still going into the stomach.

It’s never the wrong time to talk to the doctor about a PEG. Conversation does not mean that a person has to do something. It just gets more information and more perspective.

July 6, 2016 at 7:01 am  #1274594    

Cheryl3700

Thanks so much for this information. Heading into Boston for #2 of Taxol today. Will ask what they suggest about supplemental nutrition and how it usually goes with their other EC patients. Lately it’s day by day and everyday brings something new. Trying to hang onto this rollercoaster.

July 29, 2016 at 4:41 pm  #1286732    

Cheryl3700

Update July 28 2016, hubby completed 3 taxol/cyramz and then had a week off. He started running fevers almost everyday up to 101. Took him for testing, no infections, but fever persists, today is day 10 of fevers again at 101.

He’s also been very very weak, had to wheel him up to his dr appt Wed. Chemo was cancelled due to weak and fevers. Was sent for scans that day, which is 4 weeks early.

Only thing we know is they saw something in lung and are sending him for an induced sputum test Monday. Is that something ordered which could check for a possible lung infection? Still waiting for official read of scans.

They decided to check his TSH, which came out 9.4, checked free T4 it’s 1.1. waiting to hear if he will need thyroid hormones. He hasn’t been able to eat much at all, is very tired and weak.

Is thyroid something that can get destroyed with so much chemo? he’s had 31 of them so far. I don’t think EC metastasizes to thyroid often, but guess that could happen?

Thanks for listening.
Cheryl

  • This reply was modified 1 year, 1 month ago by  Cheryl3700.
  • This reply was modified 1 year, 1 month ago by  Cheryl3700.
July 30, 2016 at 10:23 am  #1286734    
JimC Forum Moderator
JimC Forum Moderator

Hi Cheryl,

I am sorry to hear of your husband’s latest struggles.

Yes, the induced sputum test can help diagnose lung infections. And in clinical trials Cyramz (ramucirumab) was shown to cause hypothyroidism in a small percentage of patients. It is recommended that thyroid function be monitored during treatment with Cyramz.

I hope that very soon your husband’s doctor’s can discover and successfully treat the cause of his fevers and other symptoms.

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

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