9mm lung nodule and lytic rib lesion - 1268659

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cheryl3700
9mm lung nodule and lytic rib lesion - 1268659

Cheryl3700
Hi, I found this site highly helpful back in 2011 when my mom had lung cancer. Now finding myself back here, husband having issues. First symptom, swelling in RUQ. Little pain. Dr thought hernia, ultra sound negative. Onto CT scan found lytic lesion of 7th rib on right side, plus 9mm nodule in lower left lung. He also had 2 confirmed SCC skin cancer last year on scalp, grenz radiation 8 cycles.
I know SCC skin can metastasize, but rare. Indications of the SCC report were not concerning for spread.
Question is, can a 9mm lung nodule metasasize to bone? Just not sure if it’s too small to do that?
Thank you for this wonderful site!!

JimC
Hi Cheryl,

Hi Cheryl,

Although I'm sorry you need to be here, welcome back to GRACE. I'm sorry to hear of these issues you and your husband are facing.

Although cancer can do pretty much anything, it would be unusual for such a small nodule to spread and produce a symptomatic bone lesion. For that reason, the usual treatment for a Stage I cancer such as a solitary 9 mm nodule would be surgery, without following up with chemotherapy.

I hope that as your husband's workup continues you will discover that this does not represent cancer.

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

cheryl3700
Thanks for the encouraging

Thanks for the encouraging response. Now more tests to find out what both things are. Best case we are hoping for benign 9mm and the rib is something also benign. Just scary when there are 2 findings together. On CT quite a large length of the rib is involved.

cheryl3700
Update as of 3/14/15: 2nd Ct

Update as of 3/14/15: 2nd Ct scan of chest reported a 1.1cm nodule in other lung and hiatal hernia. Bone scan reported only the 1 expansile lytic rib lesion. Went to Boston for consultation, were thrown a curve ball when their dr/radiologists told us, they suspect possible esophageal cancer. That was not reported on any other tests and we were not prepared for that added news! However, hubby has been having problems in that area for at least 6 mos and I've been trying to get him to ENT for swallowing issues, so it's not totally new news, but had no idea of possible EC. Onto PET scan soon and GI endoscopy.

It's a little unsettling to uncover so many things at same time, still hoping they are all unrelated, but scared!

catdander
I'm so sorry Cheryl, I know

I'm so sorry Cheryl, I know how scary this must be. Hoping for the best.

Keep us posted,
Janine

cheryl3700
Now fighting ins who denied

Now fighting ins who denied pet scan. Dr wants pet b4 endoscope biop because the info from pet will help guide where to take biop and if biop done first that will cause biop site to light up on pet. However ins is denying stating he's not had a biop of cancer yet and so won't approve pet. Ugh! So frustrating that nothing is getting done.

Ins denied once, denied on peer to peer and denied first appeal. Dr is doing 2nd appeal.

Sorry had to vent!

catdander
I know how frustrating all

I know how frustrating all this must be. I'm glad the doctor is so involved and likely to be of much help. I can't say why the ins would deny this. A PET scan after a worrisome CT is pretty standard work up in the US for lung cancer. Perhaps it's because the nodule is 9mm not 10mm (1cm). One cm is considered the benchmark for a nodule to be large enough to show uptake on the PET scan. Often when smaller it doesn't express enough activity to show uptake. Hopefully the doctor will have better luck. If not perhaps a specialist with a bigger name could inspire the insurance co.

From Dr. Silvestri's post on work up of lung cancer, "Another complementary scan to the CT scan that is being increasingly performed in patients with known or suspected lung cancer called a Positron Emission Tomography (PET) scan. This scan is more of a metabolic scan. It tells us whether what we see on the CT scan is metabolically active. In patients with cancer, the scan should “light up” or show “uptake” in areas where there is tumor." http://cancergrace.org/lung/2010/05/12/general-work-up-and-staging-of-lu...

Keep us posted,
Janine

cheryl3700
Well insurance company won,

Well insurance company won, we had to get upper GI EUS done first, and as suspected GI dr is saying 90% chance its esophageal cancer T4. They biopsied it along with one lymph node. Now ins will probably allow PET after biopsy results come back. So scared.

catdander
Hi Cheryl,

Hi Cheryl,

I'm so sorry about the possible diagnosis. I don't think it's necessary to remind you of keeping hope alive. I've decided through my husband's journey that hope remains no matter what; there's always something to be hopeful for. So I'll remain hopeful.

Best to you and your husband,
Janine

cheryl3700
Thanks for all the responses

Thanks for all the responses of hope.

Update 4/8/15, confirmed stage IV esophageal cancer, adeno, G3. Waiting on brain MRI. Confirmed met to rib. Getting chemo port put in next wed. Waiting her2 status.

Still feel like I'm in a nightmare and will wake up soon.

Also going to chemo class next week. Dr said he will get 5fu, will get more details next week.

Praying we can beat this beast for as long as possible.

catdander
Hi Cheryl,

Hi Cheryl,

I am so very sorry about your husband's diagnosis. I meant to come back a respond earlier so sorry for the delay. What I have to say are my own thoughts from my own experience and not those of a medical expert.

I know how unreal it seems to you and I wish I could give you some helpful ideas to move through this. What comes to mind right now and maybe because of a movie I watched last night is a good scream is quite cathartic. I remember when D was diagnosed, he was very sick and needed a lot of care. I found myself screaming in the car when I thought no one else could hear. I mentioned it here on Grace (there was quite a bit more activity and conversation here at the time) and it seemed everyone had a positive reaction to this type of letting it out. Several had tried it and several planned to. Help you husband to be as comfortable as possible through all the treatment, side effects, and symptoms. To do that you'll also need to recognize your own needs by planning for them because your body stops telling you what that is. I think it has something to do with the fight or flight hormones, Adrenaline, Cortisol, Norepinephrine. Your body most likely is stuck in the fight or flight mode and these hormones help you address the problem no matter what; but since we want to make this a long long process it's important to recognize your body has most likely shut down any mechanisms of telling what the body needs/wants. I let a lot go by the way side and payed a price though I'm rectifying that now.
And very important and maybe doesn't even have to be mentioned but only reminded...There's always reason for hope. Hope can be a very powerful tool.

All best,
Janine

cheryl3700
Thanks so much Janine, I

Thanks so much Janine, I remember doing those screams when my Mom had cancer. Lately I listen to my favorite keep me going song "strong enough" by Matthew West.

Chemo starts next week Wed. Will be folfox with 5fu pump 2 days at home - every 2 weeks. Not sure what to expect, don't know anyone whose had chemo. Guess we will be learning lots.

Thanks again for your response.

JimC
Hi Cheryl,

Hi Cheryl,

Here is a page from the American Cancer Society which describes the possible side effects of such chemotherapy: http://www.cancer.org/cancer/colonandrectumcancer/detailedguide/colorect...

Of course, each patient is different and your husband is unlikely to experience all of the listed side effects.

I hope that he does well with his treatments.

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

cheryl3700
Hi, slight delay in chemo due

Hi, slight delay in chemo due to little skin infection near chemo port. Starting the 29th now.

Was reading endoscopy report . . . have a couple questions.

Mass found from 37cm to GEJ at 41cm, appeared to extend to castric cardiac. Bx taken of cardia component separately. What is castric cardia?

Several perigastric nodes were seen. These were round, well defined and hypoechoic. What does this mean?

Thanks.

cheryl3700
Update 6/15/15:

Update 6/15/15:
Completed 3 rounds of folfox with 5fu pump at home for 2 days. Tolerating chemo pretty well, has the cold issues and slight numbness in hands and feet for 5 days or so following. After first round of chemo, hubby ended up in the hospital due to passing out, guess we learned real quick about hydration!! Funny thing is, he's got practically no issues swallowing except a pill here or there. Also no pain from the rib lesion. So thats all good.

Getting scans on 7/1 after 4th chemo to see whats going on.

Last few days developed a hoarse voice, so hoping thats just a cold and not something spreading. Also got a bad flare up of his gout in wrist, can't even move it at all. That usually passes in a few days.

Very curious what will happen after these 6 rounds, guess it all depends on those scans. If things are good, perhaps a little chemo break? If things are bad, we will see what is suggested.

Will update after 7/1.

cheryl3700
Update 7/2/15:

Update 7/2/15:
Completed 4 rounds of folfox with 5fu pump, we believe the hoarse voice was from thrush infection got a prescript for that which is helping.

Got CT scans and were pleasantly surprised with a good reduction in tumor size (40%+). Plan from our oncologist at MGH is to continue with folfox. 4 more rounds and another scan.

Only issue with blood work is platelets continue to drop, presently below 150. Eventually those could cause a delay in one or more chemo treatments. But thats really not bad for overall experience with this folfox. The hands/feet numbness and problems with cold continue, but subside after 4-5 days post chemo.

Maybe with enough tumor reduction, there could be a chemo holiday of a month or two in the future. This esophageal cancer is well nick named as "the beast".

For now we will relax with this good news that this chemo is working.

JimC
Hi Cheryl,

Hi Cheryl,

Thanks for the update, and congratulations on the good scan report, and relatively good tolerance of the folfox regimen, which never tends to be an easy one.

Wishing your husband continued success!

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

cheryl3700
Waiting for results of next

Waiting for results of next scans after 8 rounds of folfox. Looking at older ct RPT, can anyone tell me what neoplastic etiology means?

IMPRESSION:
Indeterminate 2 to 8 mm noncalcified bilateral scattered pulmonary nodules. The differential diagnosis would include neoplastic etiology, noncalcified granulomas, and intraparenchymal lymph nodes.

Thanks!

JimC
Hi Cheryl,

Hi Cheryl,

In the "Impression" section of a scan report, the radiologist speculates as to what the findings might represent. "Neoplastic etiology" refers to these nodules possibly being tumors.

Good luck with your scan results!

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

cheryl3700
Update scans from Aug 20,

Update scans from Aug 20, 2015 show everything is stable, nothing new to report. Dr. says stable is good, however it's scarey, makes you wonder does this mean next will be progression, it's nerve wracking! Chemo #10 was completed. Some blood counts are moving too low like RBC and BUN. But was given ok for chemo, so guess they aren't too far off yet. This past week has seen some symptoms return, first the rib pain is back, he's got tumor in 5th and 7th ribs that were reported more sclerotic and less lytic, they had not been given any pain up to last week. Stabbing pain when he rolls out of bed, but it goes away quickly. A little more trouble swallowing pills and chocked on scrambled eggs yesterday am. Additionally the constant throat clearing which had gone away is back a lot of the time. Also a fair amount of coughing. All of these things make us nervous of progression. Will mention on 9/23 at chemo appt. :-(

cheryl3700
Can't figure out how to get

Can't figure out how to get the signature with history on my ID, any link to how to do that?

catdander
Hi Cheryl, this link should

Hi Cheryl, this link should help, http://cancergrace.org/topic/grace-tips-set-your-forum-signature

Note that there are 2 profiles, one for WordPress our host site and one for Grace. Your want the Grace profile and can get there by clicking on your user name, "Cheryl3700" to the left of your posts.

Hope this helps,
Janine

cheryl3700
Update after 12 rounds of

Update after 12 rounds of folfox, ct scans on Oct 11 15 showed everything previously noted is stable. But it did note a new finding:

There is new patchy ground glass opacity in the posterior aspect of the right upper lobe maybe represent a focal area of infection or aspiration.

Wish they would have mentioned the size of this new area. Waiting to get ct images and try to find it.

But since all else is stable, going onward for chemo 13-16.

JimC
Hi Cheryl,

Hi Cheryl,

Congratulations on another stable scan report! Infection/aspiration seems like a pretty likely explanation for the patchy area, and I hope that turns out to be what it is.

Thanks for sharing your good news!

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

cheryl3700
Update Dec-9-15: Completed

Update Dec-9-15: Completed 16 rounds of folfox with 5-fu pump. Waiting re-staging scans fri Dec-11.

Hubby was having severe issues with dexa, rage and extreme agitation episodes. He was taken off the dexa for chemo #15 and it is the first time he got sick, developed horrible chills on way home from hospital and was throwing up in the car, had fevers for 3 days. So for chemo #16, the dr thought lets chance it again, maybe coincidentally he had some bug during the prior session.

So chemo #16 starts and before the oxiliplatin is done infusing, he starts with the same horrible teeth chattering chills, they stopped the bag. He said he was not nauseous just chilly. They hooked up 5-fu pump and we tried to go home. In lobby of hosp he got real sick again. He looked so weak, that I put him in a wheel chair and brought him back upstairs to infusion center. In there he passed out and they did an EKG, after which he passed out again with seizure like movements of head and arm, they stopped 5-fu and went into emergency mode. After many many tests, all looked ok, they assume hes now become allergic to the chemo.

Going to allergy testing Dec 16. He's very weak still even 1 week after all this. Worried.

catdander
Hi Cheryl, I'm so sorry about

Hi Cheryl, I'm so sorry about the difficult time your husband is having. I know how worried you must be. Hypersensitivity to a platinum drug is very common past 4 or so cycles. We have a lot written about it so you can do a search but the usual thing to do is stop the platinum and continue with the other drug. This is a good example of the threads about it, http://cancergrace.org/lung/topic/carboplatin-hypersensitivity-reaction/

I hope hope hope your husband feels better already.

Janine

cheryl3700
Janine, thanks for the

Janine, thanks for the response. Was thinking hubby made it thru 14 cycles with dexa without issue. Its too coincidental that the 2 where dexa was skipped, he had issues. In any event, he will be allergy tested to see if skin test is positive. His Esophageal Cancer is being kept at bay, but not shrinking, so I'm not sure what next steps will be. I believe they are talking to use the desensitize option, they don't want to stop this drug before they absolutely need to. Will update in a few weeks.

cheryl3700
Ok got ct scan results. I've

Ok got ct scan results. I've spent some time comparing to last 5 sets of scans. I'm nervous that things look ever so slightly progressed.

But what is strange, I see something new that was not on any prior scans all the way back to last Feb. It's in bottom of left lung and its shaped like a mini tornado, very long stringy thin part going to a thicker base. I'd say 6mm at widest, and perhaps as long as 19mm. It's not white, it's got same looks as other soft tissue looks in that area. Are tumors always round?

Waiting is the hardest part, won't see onc til Dec 18th. Hopefully it's something else weird showing up.

JimC
Hi Cheryl,

Hi Cheryl,

With regard to the existing nodules, if you see "ever so slight" progression, I would caution against reading too much into that. Depending on the way the CT "slices" are cut, nodules can look slightly different without indicating true progression. And if it's that hard to spot, it's most likely not clinically significant.

As far as the other anomaly you describe, you may want to discuss that with your doctor, as it's hard to know what it could be without seeing the images. If it appears on only one image, it could be a digital artifact not representative of anything.

Although I was guilty of the same thing, this may be a good example of the dangers of reading your scans, or even trying to interpret radiologist's reports. There were times when I was concerned about something seen on an image or mentioned in a report, which when discussed with my wife's oncologist it turned out to be insignificant.

I hope that's the case for you.

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

cheryl3700
Thanks so much for the

Thanks so much for the response Jim, yes, I understand that I may not have the same slice on current CT matching properly with same slice on previous CT. I've looked at every set up to now and I was correct there was no progression in the last 4 scans. This new item shows up in many slides for the length of it, in the 1.00 slices it shows up in about 19 slides, it was not in any of those last 5 scans. It did not exist in any view before axil or sag or cor. But its in all of them for this set. He did have the issue of a seizure and they took a chest xray 2 weeks ago and at that time, it noted reduced lung volume then, who knows maybe it's a side effect of the episode and will go away. Thanks again for your response. Cheryl

cheryl3700
Skin testing was negative for

Skin testing was negative for oxiliplatin, but Dr says negative doesn't mean not allergic, just means skin testing didn't cause a reaction.

I see this on ct scan report online: Tiny hepatic hypodensity too small to definitively characterize but somewhat concerning as it is new or more conspicuous than prior. Esophagus and rib unchanged.

Found chest X-ray report which states the following: Patchy opacities appreciated at the left lung base, may represent atelectasis, aspiration or pneumonia. This is what I'm seeing in lung.

Still waiting for chest ct report.

Meeting with Onc Fri to see how we will proceed.

cheryl3700
CT chest report: There are

CT chest report: There are new nodules in the left lower lobe, along the right major fissure and in the left lung base measuring up to 4 mm. Impression: Indeterminate new lung nodules. The possibilities include inflamatory nodules and metastases.

Are new nodules a sign chemo has failed? Time for trying new chemo?

catdander
Cheryl,

Cheryl,

I'm so sorry there is possible progression. I think you know this but want to make sure that you know we don't have any specific information on esophageal cancer so we don't have info on these particular drugs. When speaking about chemo usually it works for a while then not as much or the side effects become too harmful. The signs of growth where it had once contained or shrunk tumors are usually signs of a chemo not working as well as it once was. New growth points to treatment not working though sometimes size matters. I'm not familiar with the drugs he's taking and couldn't say where on the spectrum all this lies. A call into the cancer center to speak to a nurse or doc is very appropriate for questions you have.

The overall point of treating any incurable cancer is to lengthen life while also maintaining quality of life. These are the 2 goals all treatments should be based on. I've always found the idea of maintaining the balance a most daunting part of oncology.

I hope you, your husband and his treatment team maintain a good balance for a long time to come.

Thinking of you,
Janine

cheryl3700
Met with Onc today, since all

Met with Onc today, since all new findings are tiny and known cancer locations are unchanged, we will continue with folfox until absolutely necessary to move off it. Plan is inpatient desensitizing infusion for next round, awaiting date from hospital.

Meanwhile on NBC nightly news last night was a segment on EC. Getting word out there, new cases are growing at alarming rate.

catdander
It's good to hear he can

It's good to hear he can remain on same chemo. I heard of others getting desensitization treatment for chemo that works well but has acquired hypersensitivity. I hope he does very well and the small spots are nothing more than a fleeting infection already gone.

Best of hopes moving forward,
Janine

cheryl3700
Chemo sessions #17,18,19

Chemo sessions #17,18,19 folfox
Drs are thinking oxiliplatin allergy, did inpatient desensitizing folfox, added back steroid (prednisone). Bad agitation attacks came back, had 2 just now.

Last scans in Dec 2015 showed new lung nodules and new concerning spot in liver. Since all are new and tiny, waiting for next scans after #20.

Hubby getting tired of it all. I just don't know how to help him.

Thanks for reading.

catdander
I'm so sorry your husband has

I'm so sorry your husband has to go through all this. Stopping treatment is always a option. There may be a trial or other treatment to try. There will be a time at which no treatment is better than bad treatment. I think the hardest treatment decision is to choose to stop treatment and move to comfort care only. I think it's the most important one too. A break with a plan to start again in 2 weeks or a month is also possible. He can always go back. He could stop treatment, go on hospice (comfort care) then decide to go back to anti cancer treatment.

An important note is there are excellent studies done that show people with incurable cancer who stop treatment when more harm than good is being done with live longer and happier lives with hospice care.

Since my husband is NED since 3 years I never had to be in the situation to have an opinion on that. Please don't think I'm suggesting that hospice is the what I think you should do. I just want to make sure you have that side of the options list.

I hope he's feeling better soon and I hope you are getting some of what you need as well.
Janine

cheryl3700
Thanks Janine, hubby always

Thanks Janine, hubby always feels like its time to stop when he's having one of these attacks. But afterwards his mind is set to continue and fight it with more Chemo. He's usually nervous to report any side effects because he's afraid they will stop this first line of folfox. But then again in the throws of bad reactions, he's saying he wants to stop. It's such a double edge sword. On one hand he knows the treatments have given him these past 10 months with relatively no issues from his esophageal cancer, just dealing with chemo side effects. On the other hand he just waiting for the other shoe to drop and for the folfox to stop working and that's got him really on edge. When my Mom had terminal cancer back in 2011, it was such a different experience, she was accepting and happy go lucky. I'm still struggling that he's struggling so bad. So tough. Cancer sucks.

cheryl3700
I've been charting hubbys ALC

I've been charting hubbys ALC, AMC, NLR, PLR & ANC since last April. Recently for the last 2 blood works done before chemo, his:
PLR has doubled from around 100, to now around 200
NLR shot up to over 5 (from 3 or less).
ALC cut in half (from around 1500 to 800).

Not sure what any of that means other than those ranges are in the "higher risk" ranges and its making me worry that progression will be the topic for next scans coming around week of Feb 15th. Although he's still symptom free from the esophageal cancer itself (thank goodness for some blessing).

Day by day.

cheryl3700
Hubby has been getting severe

Hubby has been getting severe panic attacks the day after chemo. They tried chemo without dexa steroid and that caused worse issues. Now doing prednisone and still having the attacks. Just had 2 tonight, these are horrible to watch, he's beside himself, arms, legs flailing, lying in bed crying, moaning, moving side to side, can't talk. He says it starts with feeling of indigestion in chest, not pain but bad discomfort. We tried preemptive strike of ativan every 4 hrs today, but yet he still had the attacks.

Anyone have suggestions or experience with this?

Thanks so much.

catdander
Hi Cheryl,

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

cheryl3700
Update Apr-2016. Hubby is

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.

JimC
Hi Cheryl,

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

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

cheryl3700
Update May 2016. Hubby doing

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.

cheryl3700
Update June 2016, 28 folfox

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.

JimC
Hi Cheryl,

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

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

cheryl3700
Thanks Jim, official report

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.

cheryl3700
Moved onto Taxol/Cyramza, had

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

JimC
Hi Cheryl,

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

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

cheryl3700
Thanks so much Jim, so this

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.

JimC
Hi Cheryl,

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]

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

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