Poorly differentiated Pulmonary Adenocarcinoma – Stage IV

Portal Forums Cancer Treatments / Symptom Management ALK Inhibitors Poorly differentiated Pulmonary Adenocarcinoma – Stage IV

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August 11, 2016 at 8:15 pm  #1288026    

DJ Nikkam

Dear Craig – whew, what a detailed response. I truly appreciate your insightful inputs and for sharing your own experiences.

I will follow up with my mom’s Onco. However here are a few challenges at my end:

1. While I am in the US, my mom currently lives in India. This limits her options severely. There are no clinical trials of any sort in India unfortunately
2. The only other option that is available in India is Ceritinib. For now Alectinib is a distant option
3. With regards to my mom’s CT scan – while the scan shows a stable situation (no change in the lesions and lymph nodes) as compared to her last PET CT on June 6, her Pleural effusion is persisting
4. Her Onco is basing his decision of limited benefit on Crizo, given her continued PE, and the fact that there has been no change in the lesions / lymph nodes.
5. Somehow her Onco has not suggested a re-biopsy. also given her current physical condition (fatigue, unable to eat, general weakness), he may not want to subject her to another biopsy

We had tried Carbo / Pemex (2-infusions) earlier, and that did not give the desired results.. her PE had increased…. so her Onco feels this is not an option at the moment..

Given the limited option or the only other option available (Ceritinib), her Onco is thinking of leveraging that and see if it helps…

She is 67 now, and was dx in Feb 2016… keeping fingers crossed

Thanks
DJ

August 12, 2016 at 8:33 am  #1288030    

Craig

It is not unusual to have ongoing pleural effusion even while crizotinib is controlling the cancer elsewhere and overall. If the PE is getting progressively worse the situation might be different (ask an oncologist), but if it simply continues there are other ways to deal with the PE which you can discuss with your oncologist (e.g., drain off the liquid periodically, or even undergo a pleurodesis (“TALC”) procedure.

If the only “progression” is in the pleura, there is a fair chance that there are enough cancer cells floating in the pleural effusion liquid and it is a simple matter to draw off some of that fluid for testing. However, if the only other targeted-drug option available is ceritinib and there won’t be multiple trials of other ALK drugs there which care (in their exclusions), it does sound understandable if her oncologist wants to just try ceritinib and see what happens.

If I recall correctly, I think there was early research data showing that sequencing “crizotinib-then-ceritinib” resulted in longer combined overall cancer control duration vs. skipping crizotinib and just jumping immediately to the more potent ceritinib. (New research is suggesting that sequencing through crizotinib might not be better in the case of alectibinb, though. I think CancerGRACE is going to hold a webinar on that subject very soon).

Best hopes,

Craig in PA


- Stage IV never-smoker ROS1-driven m-BAC indolent adenocarcinoma
– Dr. Alice Shaw’s Xalkori (crizotinib) for ROS1 trial @ MGH, Boston (5 yrs)
– carboplatin + pemetrexed (7 mo)
– TPX-0005 for ROS1 trial @ MGH (starting June 2017)

August 16, 2016 at 9:42 am  #1288325    

DJ Nikkam

Dear Craig – had a follow on with my mom’s Onco… he took a few days to consult with his team on Oncologists.

Based on his analysis, he has recommended that we shift to Ceritinib. I tried to understand his point of view, and all he has to say was clinically, my mom has not shown any improvement, and my mom has been having progressively worse cough for the last few weeks. Also her PE is persisting. So he was firm in saying that she needs to move to Ceritinib. So at the moment, I have decided to go with her Onco’s direction, and she will be starting Ceritinib later this week.

When I requested that we stay on Crizo for atleast another month, he said that that he wouldn’t recommend that… essentially it would have been my call, if I had to decide for my mom to stay on Crizo…. tough call, but I decided to give benefit of doubt to her Onco…

Not sure if this is the optimal situation, but am keeping my fingers crossed.

Thanks
DJ

August 16, 2016 at 11:13 am  #1288328    

Craig

Her local oncologist is the best judge of what he is seeing there. If the scans are stable but there is worsening clinically (i.e., symptoms of cancer) that is making him believe the cancer is likely progressing in the pleura (not just stable with no change in amount of PE fluid produced), I can understand the onc’s belief that it is time to move forward to the 2nd generation inhibitor drug that is available there. Progression in the pleura would certainly be a different scenario than stability with continued but stable pleural effusion fluid production.

Sometimes we don’t have a choice and have to focus on the current urgent issue rather than hypothetical scenarios that might make sense if the circumstances were a little different.

Like any ALK inhibitor drug, ceritinib doesn’t always control cancer that is crizotinib-resistant, but the odds are good and it’s the obvious choice if it is the only alternative inhibitor available there.

Best hopes,

Craig in PA, USA


- Stage IV never-smoker ROS1-driven m-BAC indolent adenocarcinoma
– Dr. Alice Shaw’s Xalkori (crizotinib) for ROS1 trial @ MGH, Boston (5 yrs)
– carboplatin + pemetrexed (7 mo)
– TPX-0005 for ROS1 trial @ MGH (starting June 2017)

September 6, 2016 at 6:06 am  #1288518    

DJ Nikkam

Dear Craig / Jim / Janine / all – my mom now on Ceritinib, is having elevated sugar levels (random sugar hovers around 400 mg/dl as measured by the home testing kit).

She is a diabetic, and on oral medication for this, Her random sugar levels were in the range of 140, while she was on Crizotinib. She is now taking insulin shots to supplement her Oral diabetic meds.

My question is for those folks who are on Ceritinib and having high blood sugar levels – how have you manged this?

One other thing.. Certiinib is certainly leaving far more tired than Crizo… also she has been having Diarrhea, a known side effect of Ceritinib.

Pointers will help

Thanks much
DJ

September 6, 2016 at 7:11 am  #1288521    

Craig

I submitted a long reply — twice — but the site did not post it. If this short comment takes I’ll try breaking it into smaller bits.


- Stage IV never-smoker ROS1-driven m-BAC indolent adenocarcinoma
– Dr. Alice Shaw’s Xalkori (crizotinib) for ROS1 trial @ MGH, Boston (5 yrs)
– carboplatin + pemetrexed (7 mo)
– TPX-0005 for ROS1 trial @ MGH (starting June 2017)

September 6, 2016 at 7:13 am  #1288522    

Craig

(part 1 of 2):

I don’t have any info about diabetes management while on ALK inhibitors. The only thought I can suggest is that there was an experimental EGFR inhibitor that had diabetes as a side effect and I think it was usually managed with the diabetes drug metformin. Your mother’s endocrinologist might have decided that drug was not sufficient or was not appropriate for her, but you could ask.

I do not know the rules for taking ceritinib, but the first countermeasure for diarrhea from crizotinib was to have some food first so it is not being taken on an empty stomach. The 2nd countermeasure is usually using Imodium pills as needed (but being careful not to take too much since that can cause dangerous constipation). Here oncologist may be able to prescribe other Rx drugs if necessary, but some diarrhea on some days (not every day) seems normal — I have some every week from crizotinib though rarely on more than one or two days without it clearing up for a couple of days.

(. . . continued . . .)


- Stage IV never-smoker ROS1-driven m-BAC indolent adenocarcinoma
– Dr. Alice Shaw’s Xalkori (crizotinib) for ROS1 trial @ MGH, Boston (5 yrs)
– carboplatin + pemetrexed (7 mo)
– TPX-0005 for ROS1 trial @ MGH (starting June 2017)

September 6, 2016 at 7:17 am  #1288524    

Craig

(. . . continuing . . . part 2 of 2 . . . without clickable embedded URL links)

Some oncologists experiment with Alzheimer’s or ADHD drugs to combat tiredness, e.g., Concerta.

If you are looking for a large number of ALK peers (e.g., to find some with diabetes), they used to be found on the inspire.com web site ( https://www.inspire.com/groups/american-lung-association-lung-cancer-survivors/discussion/anyone-on-pf-02341066-crizotinib-alk-gene-part-3/ ) although there seems to have been some drifting away to facebook groups, first by the ROS1’ers ( https://www.facebook.com/groups/1600492740225495/ ) like me who weren’t accommodated as well there, and then ALK’ies ( https://www.facebook.com/groups/808015982616743/ ). One problem with facebook is that it is not anonymous, so that might inhibit conversation by some people who don’t want the world to know that they or their family member has a fatal disease. Another is that facebook’s design seems (IMHO)(IMHO) for group discussions of details rather than short updates.

Best hopes,

Craig in PA


- Stage IV never-smoker ROS1-driven m-BAC indolent adenocarcinoma
– Dr. Alice Shaw’s Xalkori (crizotinib) for ROS1 trial @ MGH, Boston (5 yrs)
– carboplatin + pemetrexed (7 mo)
– TPX-0005 for ROS1 trial @ MGH (starting June 2017)

September 6, 2016 at 7:22 am  #1288525    

Craig

P.S. — it looks like this web site might have a defect. Although I used the built-in button to embed URL links it would not post my message until I removed the HTML code to underline & link the words that if clicked would’ve gone direct to that URL. Fortunately it accepted the URL links as long as they were typed in rather than embedded with HTML codes to embed the links behind the intended words/phrases instead of as plain text.


- Stage IV never-smoker ROS1-driven m-BAC indolent adenocarcinoma
– Dr. Alice Shaw’s Xalkori (crizotinib) for ROS1 trial @ MGH, Boston (5 yrs)
– carboplatin + pemetrexed (7 mo)
– TPX-0005 for ROS1 trial @ MGH (starting June 2017)

September 12, 2016 at 8:28 pm  #1288612    

DJ Nikkam

Dear Craig – after about 18 days on full dosage of Ceritinib (750 mg / day), week my mother displayed severe side effects – loss of appetite, extreme fatigue, diarrhea… her blood work indicated her liver enzymes were high (ALT, AST, Bilirubin total count, combined with high Sugar levels).

So on Sunday, we got her admitted, to get help with her strong side effects. Her doctor has at the moment given her a holiday from Ceritinib till such time her liver function and sugar levels level out…

The doctor feels that Ceritinib is working, thought however a CT was not performed. Only a chest x-ray was taken, and he apparently based his opinion on that… so at the moment, her Onco is monitoring her liver function, and has indicated that he may reduce the dosage…

any specific pointers to keep in mind while on Ceritinib?

thanks
DJ

September 13, 2016 at 5:33 am  #1288613    

Craig

I haven’t taken ceritinib so I don’t know much about the side effect except that yes, it can be hard on the liver and it is common to switch to a lower dose if that happens. (I’d imagine it is more common in smaller & lighter people.) The lower dose might also help with the fatigue, but some people are sensitive to one drug or another. I have also heard of oncologists experimenting with brain drugs to see if it helps with the fatigue, e.g., drugs normally used for ADHD or alzheimers disease patients.

Best hopes,

Craig in PA


- Stage IV never-smoker ROS1-driven m-BAC indolent adenocarcinoma
– Dr. Alice Shaw’s Xalkori (crizotinib) for ROS1 trial @ MGH, Boston (5 yrs)
– carboplatin + pemetrexed (7 mo)
– TPX-0005 for ROS1 trial @ MGH (starting June 2017)

September 15, 2016 at 6:50 am  #1288624    

DJ Nikkam

Dear Craig / Jim / Janine – my mom had to hospitalized for a few days to stabilize her condition from the intense side effects of Ceritinib – viz., extreme fatigue, loss of appetite, diarrhea occurring due to elevated liver enzymes, high sugar levels …

Her onco gave her a drug holiday for a week, to help her recover…she is back home now, and has been asked to reduce the dosage to 600mg (from 750mg/day).

While in hospital, they took a chest x-ray, and the findings are defined as below:

1. Right side PE with passive lung collapse
2, Mild tracheo-medistinal shift to the right (same side as PE)

I am particularly keen to understand the significance of point #2 above – that is tracheo-mediastinal shift to the right.

Any thoughts / pointers will help

Thanks much
DJ

September 15, 2016 at 7:24 am  #1288626    
JimC Forum Moderator
JimC Forum Moderator

Hi DJ,

I’m sorry to hear of your mom’s trouble with ceritinib, and I hope that the treatment break and reduced dose will help.

As far as the tracheo-mediastinal shift, that can occur as a result of a change in pressure in the pleural cavity. In this case, one would expect that the pleural effusion and collapsed lung is to fault, but usually the shift is away from the area of increased pressure. Shortness of breath and cough are common symptoms, and when there is shortness of breath fatigue can certainly result, although that could be a side effect of treatment.

Some people have a mild shift just as a matter of course, so perhaps a comparison to previous scan might help.

Do her doctors expect the lung to re-inflate? I think they would best be able to judge whether this “mild” shift is a cause for concern requiring an intervention.

I hope she feels better.

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

September 15, 2016 at 7:39 am  #1288627    

DJ Nikkam

Thanks for your response Jim…

I found an article which explains as to why the shift is towards the same side as that of the increased pressure. I will check with my mom’s onco on this…

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4170449/

DJ

September 15, 2016 at 8:11 am  #1288628    
JimC Forum Moderator
JimC Forum Moderator

Hi DJ,

That does make sense, that if it’s a large enough PE and caused a significant lung collapse, the reduced right-side pressure could result in a pull to the right.

I hope you get some good answers from her 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

September 15, 2016 at 11:46 am  #1288630    

Craig

I’m ignorant about those issues so I’m glad you’ve already found some information.

I’ll hope that the lower dose of ceritinib reduces the side effects, but if the pleural effusion (PE) has been worsening despite the ceritinib then I’d hope her oncologist can somehow address that issue (and reinflate the lung) and either continue the ceritinib at a more tolerable dose or find a way to access an alternative drug via Rx or via a trial somewhere (e.g., alectinib, lorlatinib).

Best hopes,

Craig in PA, USA


- Stage IV never-smoker ROS1-driven m-BAC indolent adenocarcinoma
– Dr. Alice Shaw’s Xalkori (crizotinib) for ROS1 trial @ MGH, Boston (5 yrs)
– carboplatin + pemetrexed (7 mo)
– TPX-0005 for ROS1 trial @ MGH (starting June 2017)

September 19, 2016 at 11:37 am  #1288658    

DJ Nikkam

Dear all – my mom is now on Ceritinib… for about a month now… (prior to this, 4 months on Crizo..). Ceritinib has been a tough drug for her so far. she has reduced the dosage to 3 (from 5).

One question – she still does have mild cough (more like phlegm build up) on an ongoing basis..

Any pointers on what could be done to reduce this cough / phlegm build up situation?

thanks much
DJ

September 30, 2016 at 11:52 am  #1288810    

DJ Nikkam

Dear Craig, Jim and Janine – my mom is on Ceritinib (about a month now, and on Crizo for 4 months prior to that. Prior to Crizo – 2 rounds of Carbo / Alimta infusion).

Ceritinib has been very tough on her. She started with 5, now down to 3 tablets / day. intermittent Diarrhea, vomiting, severe fatigue, combined with significantly high blood sugar levels.

Now for the past week or so, she has been having occasional speech issues. Spoke with Onco, who has suggested getting an MRI done.

Am reaching to get some thoughts around this. While my mom will get her MRI in a day or two, I would like to know what are the most common symptoms indicating brain mets? Any precautions that she could take?

She lives in India, and options are very limted beyond Ceritinib for now…

Thanks much
DJ

September 30, 2016 at 1:43 pm  #1288812    
catdander forum moderator
catdander forum moderator

If you mom did not progress on alimta many people have done very well on it for long periods of time.

The only prevention for brain mets is usually saved for sclc and is a slightly less dose of whole brain radiation known as Prophylactic cranial irradiation. Since not all people with nsclc get brain mets it’s usual to wait and see if they appear then treat them with stereotactic brain radiation or whole brain radiation depending on how many are present.

If your person’s blood sugar is very high for a length of time it’s possible to have small strokes that cause speech problems. An MRI should be able to show what if anything is happening.

I hope your mom is able to find relief.

Janine

September 30, 2016 at 3:04 pm  #1288814    

Craig

I like Janine’s thoughts.

Beyond that, I can’t guess whether what’s being seen is progression or stroke or side effect of the drug. Her doctor(s) should be able to figure it out, though.

At some point for all of us we’ll run out of targeted drugs that work. At that point we have to turn back to traditional treatments like chemo and radiation, although they my offer diminishing returns after the first chemo combo tried (i.e., low odds of benefit, sooner or later). Her oncologist will be very knowledgable about chemo options. At some point it might be worth trying an anti-PD1/anti-PDL1 immunotherapy checkpoint drug although the odds of benefit to EGFR/ALK/ROS1 seem low and there’s risks that might make things worse instead of better.

Best hopes,

Craig in PA, USA


- Stage IV never-smoker ROS1-driven m-BAC indolent adenocarcinoma
– Dr. Alice Shaw’s Xalkori (crizotinib) for ROS1 trial @ MGH, Boston (5 yrs)
– carboplatin + pemetrexed (7 mo)
– TPX-0005 for ROS1 trial @ MGH (starting June 2017)

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