Poorly differentiated Pulmonary Adenocarcinoma - Stage IV - 1273125

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nikkam
Dear Jim & Craig - an

Dear Jim & Craig - an ultrasound scan revealed that there was around 1200ml of fluid in mom's right lung. The doctor termed this as mild PE, and was of the opinion that we could wait it out.. however my mom continued to have severe fatigue and some sort of discomfort in her chest, that she decided to have the fluid tapped out. Around 700ml of the fluid was drained out. Also her blood reports indicated a normal liver function. Based on this the doctor has decided to continue with the current level of dosage (250mg x 2 daily). She continues to show significant fatigue and loss of appetite...any pointers will help

thanks much
DJ

craig
craig's picture
Thanks for the update, DJ.

Thanks for the update, DJ.

What did her oncologist say regarding the fatigue and loss of appetite and ways to deal with those?

For example, there are drugs (e.g., Megace) that can stimulate appetite if a person cannot afford to lose any more weight, but they come with significant side effect risks of their own.

As to the fatigue, I don't recall there being a good answer to that. I have known fellow patients on one ALK inhibitor or another who have had very bad fatigue and resorted to lowering their dose and even skipping days often (which in once case seemed to mean insufficient inhibitor drug to keep the cancer under control). I thought I recalled some patients being offered some kind of Rx to try to help (e.g., a ADD drug, I think), but I'm not sure. I imagine a lower dose of crizotinib could help with the fatigue side effect but I wonder if it could be best to avoiding dropping to the 200mg instead of 250mg doses for at least the first couple of months (or even until the cancer reaches the most shrinkage it'll get) -- you could ask your oncologist about that and what effect that might have on duration of control. (BTW, 200mg might make sense for a small underweight person.)

If you want to find a lot of ALK patients some of whom have/had the same issues and may have mentioned (or could answer) what their oncologist had tried for them, try this discussion on another forum:
https://www.inspire.com/groups/american-lung-association-lung-cancer-sur...

Best hopes,

Craig in PA

_________________________________
Stage 4 ROS1+ [mucinous BAC] adenocarcinoma NSCLC since 2011
Xalkori (crizotinib) 5 yrs
Alimta (pemetrexed) + carboplatin (mere months)
TPX-0005 (repotrectinib) TBD (1+ years as of Fall 2018)

JimC
Hi DJ,

Hi DJ,

It's not clear from your post when the fluid was drained, but if it was just done a day or two ago, I wouldn't assume that the full effect of doing so has become clear. An effusion of 1200 ml is large enough to cause shortness of breath and some fatigue, so draining over half of it may still prove effective in the days to come.

That will be my hope for your mother.

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>

nikkam
Thank you for your responses

Thank you for your responses Jim and Craig. Here is a brief chronology of events so far with regards to my mom's treatment:::

- Mom - age 66 years.
- Had Total Knee Replacement TKR) of both legs during Sept 2015. Healed well.
- Initial Ca symptoms started Dec 2015 - persistent cough and severe fatigue
- Initially treated for cough, till Jan 2016
- Hospitalized for breathlessness on Feb 4, 2016. Determined via x-ray to have large PE in right lung
- First PE tapping to drain around 1.5L on Feb 5, 2016.
- Dx with Pulmonary Adenocarcinoma Stage-IV on Feb 15, 2016.
- First round of Chemo - Pemex + Carbo on Feb 25, 2016.
- Tested positive for ALK D5F3.(via Ventana anti-ALK D5F3 kit) on Feb 26, 2016
- Second round of Chemo - Pemex + Carbo on Mar 17, 2016.
- Another large PE (around 2L) seen via x-ray on Mar 31, 2016 (after second Chemo).
- Second PE tapping to drain around 850ml PE fluid on Apr 1, 2016.
- Onco decided to switch to Crizotinib - 250mg - twice a day starting Apr 7, 2016.
- Typical side effects on Crizo - Nausea, intermittent vomiting etc. Controlled via anti nausea meds
- Intermittent fatigue and loss of appetite. Increased fatigue and feeling of chest congestion - Apr 19, 2016
- Met with Onco on Apr 19.2016 X-ray indicated moderate PE. Onco ruled out Pneumonitis
- Ultrasound scan of lungs on Apr 20, 2016 showed around 1200ml of PE in right lung.
- Blood report on Apr 20, 2016, shows normal liver function. Dr decided to continue Crizo 250mg x 2 / day
- Third PE tapping to drain around 700mil of PE from right lung on Apr 20, 2016
- Significant fatigue and loss of appetite continues post PE drainage- Apr 21, 2016
- Mild fever (around 101deg) on Apr 21 / 22. Spoke to Onco, who prescribed paracetamol
- Follow up visit to Onco tentatively scheduled on Apr 22, 2016 to check on her fever / fatigue

Thought i will share this to provide a better context...

thanks
DJ

nikkam
Dear Jim & Craig - met with

Dear Jim & Craig - met with my mom's Onco on 4/22. My mom had fever around 101, and was severely fatigued, loss of appetite, nausea and bloating caused by irregular bowel movements (more like constipation).

Her Onco got her admitted to address the fever, and stabilize her fatigue and other symptoms, and do a thorough evaluation. He also put a temporary stop on Crizo

Once my mom was stabilized via IV fluids + antibiotics for her fever, he performed a Contrast chest CT. While the CT scan indicated that the lesions had regressed (by around 25%), and lymph nodes were stable, her PE has increased. Her Onco felt the CT results were conflicting, as there was regression, and lymph nodes were stable, however there was an increase in PE. He was of the opinion that Crizo should have also controlled the PE

- For her PE, he was thinking that we should perhaps explore Plerodisis. This is on hold for now
- He had a follow discussion with the radiation oncologist today, who felt that there was regression with the exception of PE. However the radiation Onco left the overall decision to her primary Onco to make a decision on whether to continue on Crizo or consider an alternate
- For now her Onco has decided to restart my mom on Crizo once she stabilizes and her energy are up
- I have also requested an ALK-retest, using the FISH method (the initial ALK test was done via the Ventana ALK IHC test)

Fyi - my mom has been on Crizo for roughly 2 weeks (started on April 7). Prior to that she had two cycles of Chemo (Pemex + Carbo).

Will be great to hear your perspectives on this.

Thanks much
DJ

craig
craig's picture
Given the apparent shrinkage

Given the apparent shrinkage outside the pleura, I'd expect an FISH ALK test would just confirm what you already know -- it seems the cancer is either ALK+ (or is something similar that also responds to crizotinib). In this situation it might make more sense to consider a gene sequencing test of some kind to pinpoint the fusion partner (doesn't make much difference) and detect whether there is any mutational variant emerging that is crizotinib resistant (which would justify a change to a different ALK drug). And I'd imagine your oncologist would want to only do that test on cancer that is growing and not on the cancer that is clearly shrinking. Right now the only growing cancer seems to be in the pleura and it is pretty easy to get a sample of the fluid, have a pathologist centrifuge it down to get a good sample of cancer cells, and test those. The odds are pretty good (not great, but good) that there will be enough cancer cells for this in the PE fluid and usually the cells found this way are mostly cancer cells. It is obviously one of the easiest biopsy approaches possible. What I don't know is whether a gene sequencing test can be used on PE fluid samples (vs. needing something solid), but maybe they'd want to try the FISH test on that and/or run a panel of test to see if they can identify some mechanism of resistance -- if none but a normal ALK fusion is found, then the problem might only be getting the crizotinib to penetrate into the interior of pleura well enough.

Plerodisis is very common for patients on crizotinib who continue to have problems with their pleural effusion (and not elsewhere). It does not always work, but if you ask them on discussion forums you'll found that those it works for are quite happy they had it done. I'd recommend you ask them about their experiences with it, or just google and read their experiences.

(. . . continued . . .)

_________________________________
Stage 4 ROS1+ [mucinous BAC] adenocarcinoma NSCLC since 2011
Xalkori (crizotinib) 5 yrs
Alimta (pemetrexed) + carboplatin (mere months)
TPX-0005 (repotrectinib) TBD (1+ years as of Fall 2018)

craig
craig's picture
(. . . continuing . . . )

(. . . continuing . . . )

https://www.google.com/webhp?tab=gw&q=&gws_rd=ssl#q=pleurodesis+site://w...

As you may know, Alimta (pemetrexed) combined with a platinum-based chemo has pretty good odds for ALK patients (because they are usually never-smokers, not necessarily because of the ALK). If your oncologist felt it was working before the switch to crizotinib she/he might recommend trying to finish off that series of treatments later.

I still have no special thoughts about the fever & fatigue. If your oncologist felt the fever might be a reaction to the drug I'd recommend she/he contact an ALK expert like Alice Shaw (at MGH in Boston) or Ross Camidge (U. Colorado outside Denver) for her/his thoughts on how to manage use of the drug better. These 2 docs have probably seen & studied more ALK patients than anyone else (though others, like at Sloan Kettering in NYC or somewhere in China will eventually see more just because they serve more people). Most likely a reduced dose (200mg instead of 250mg doses 2x/day) will be tried, but the fever raises other questions I'm ignorant of.

Best hopes,

Craig in PA

_________________________________
Stage 4 ROS1+ [mucinous BAC] adenocarcinoma NSCLC since 2011
Xalkori (crizotinib) 5 yrs
Alimta (pemetrexed) + carboplatin (mere months)
TPX-0005 (repotrectinib) TBD (1+ years as of Fall 2018)

JimC
Hi DJ,

Hi DJ,

Just to add a note to the excellent information Craig provided, it is possible to perform gene sequencing on cancer cells from a malignant pleural effusion (as was done from my wife's pleural effusion eight years ago), and is a valid testing method as discussed in this paper: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3841772/

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>

nikkam
Dear Jim and Craig - thanks

Dear Jim and Craig - thanks much for the detailed information. My mom is continuing on Crizotinib at the moment. Met with her Onco yesterday.. we did an US and it was determined that the PE in her right lung persists. Currently she has around 1000ml of fluid. It is around 3-weeks since she is on Crizo.. her symptoms seem under control, however PE is persisting. I did mention to the Doctor after running a gene sequence test on the Pleural fluid.. He is still undecided on this... My mom lives in India, and the process here moves somewhat slow.. Will let you all know how it goes

thanks / DJ

nikkam
Right now, around 250ml of

Right now, around 250ml of Pleural fluid is accumulating each week, despite being on Crizotinib...

catdander
Hi DJ,

Hi DJ,

Thanks for keeping us updated. It's good to know the symptoms are gone and I hope the crizotinib dries up the PE soon.

All best,
Janine

craig
craig's picture
Thanks for the update, DJ.

Thanks for the update, DJ.

BTW, besides the pleurodesis option you might ask if there'd be any benefit to installing a port that stays implanted and drain off the liquid often (every few days?). It makes it easier to drain off liquid but I got the impression (I could be mistaken) that some patients (not the majority? maybe just a small %?) see the pleural effusion liquid volume production reduce after a while of keeping the volume in there small. I assume that an implanted port needs extra care and work to keep sterile, assume it is bad or at least has difficult consequences if it gets infected.

Best hopes,

Craig
in PA, USA

_________________________________
Stage 4 ROS1+ [mucinous BAC] adenocarcinoma NSCLC since 2011
Xalkori (crizotinib) 5 yrs
Alimta (pemetrexed) + carboplatin (mere months)
TPX-0005 (repotrectinib) TBD (1+ years as of Fall 2018)

nikkam
Dear Jim & Crag - hope you

Dear Jim & Crag - hope you all are doing well.. thought i will share an update on the current situation with my mom. My mom seems stable at the moment, her cough is under control, and she is able to walk for about 15 minutes each day (slow walk, perhaps covering half a kilometer a day). However her intermittent fatigue continues

She had a follow up visit with her Onco last week, and her Onco also felt she is stable. However her Onco also said that he did not detect a significant air passage in her right lung. While he felt there was some improvement, the pace of improvement was slow. Her Onco has advised a repeat CT on June 6, 2016 (for ref, my mom completes two month on Crizo on June 8). Keeping fingers crossed... my concern is that her Onco may want to change / supplement her current treatment plan, while I want my mom to continue on Crizo as long as possible, if her situation is stable

Any thoughts will be appreciated

Thanks
DJ

craig
craig's picture
Her oncologist is wise to

Her oncologist is wise to want an objective measure of what is happening in her lungs in order to make decisions. Stable is good, but observations can sometimes be deceiving in either direction. Patterns of response can vary among patients. I even know of a crizotinib patient (ROS1+) who did very well for 2 months but then faced very fast (weeks) regrowth with a drug-resistant mutational variant. It is even possible for the cancer to melt away in one lung but grow elsewhere where a resistant population of cancer cells emerged.

Best hopes,

Craig

_________________________________
Stage 4 ROS1+ [mucinous BAC] adenocarcinoma NSCLC since 2011
Xalkori (crizotinib) 5 yrs
Alimta (pemetrexed) + carboplatin (mere months)
TPX-0005 (repotrectinib) TBD (1+ years as of Fall 2018)

nikkam
Thanks Craig. She had her

Thanks Craig. She had her last CT scan on April 22... so the follow on CT will be about 6 weeks apart. Will such a close interval between scans, sufficient show any significant change?

Thanks
DJ

craig
craig's picture
6 weeks seems shorter than

6 weeks seems shorter than typical to me but not extraordinary. I have heard some docs doing that. Have you asked you doc the thinking that goes into deciding on 6 vs 8 weeks? For example, speed of cancer growth prior to treatment, suspicion of growth instead of shrinkage, etc. . . . .

Best hopes,

Craig in P A

_________________________________
Stage 4 ROS1+ [mucinous BAC] adenocarcinoma NSCLC since 2011
Xalkori (crizotinib) 5 yrs
Alimta (pemetrexed) + carboplatin (mere months)
TPX-0005 (repotrectinib) TBD (1+ years as of Fall 2018)

nikkam
Thanks Craig... I was also

Thanks Craig... I was also of a similar opinion that 6 weeks is somewhat of a short interval for a repeat CT. My brother met with the Oncologist this past Friday, and found out that mom is actually scheduled for a PET CT on Monday 6/6/16.

Her first PET CT was done on Feb 19, 2016 (about 3 1/2 months ago)... so clearly her Onco feels the need to evaluate her again... from what he has conveyed to us, he expected Crizo to demonstrate a better response... so the follow up PET CT... keeping my fingers crossed.

DJ

nikkam
Dear Jim / Craig - this past

Dear Jim / Craig - this past week my mom's Onco had her go through with a PET CT... the results came out fairly positive... almost all of her lesions showed reduced SUV activity, and in some cases they were NIL, which is a good thing. So he has asked her to continue on Crizo (in the 3rd month now).

Her Onco has got her liver function test done... I am listing below only those values which are out of range:::

1. SERUM PROTEIN TOTAl (BIURET) - 5.6 g/dl (normal range 6.4 - 8.3 g/dl)
2. ALBUMIN (BCG) - 3.3 g/dl (normal range 3.5 - 5.2 g/dl)
3. ALKALINE PHOSPHATASE (AMP - PNP) - 146 U/L (normal range 35 - 105 U/L)
4. Gamma GT - 69 (normal range 6 - 42)

Based on the above, it seems that her liver is under stress... not sure if this means she will have to reduce Crizo dosage (she is currently on 250mg, twice daily).

We have a follow up with her Once next week, however, I wanted to run these by you / Dr. West to see what this means...

In the meantime, your thoughts on this please..

Thanks much
DJ

craig
craig's picture
I'm delighted to hear of the

I'm delighted to hear of the good scan report, DJ.

The protein and the albumin (a particular protein) doesn't seem far off. I had mine slip below the reference range once and it was inconsequential, bouncing back into the normal range the next time. If it recurs on more tests or if you or her oncologist is concerned, make sure she's eating enough protein.

I haven't had an issue with alkaline phosphatase so I can't comment from my personal experience. Likewise Gamma GT -- not sure if it matters. Your oncologist should know or should be able to find out by contacting Pfizer or a research oncologist who has seen a lot more patients on this drug.

Many patients have their liver show it is being challenged. Being a little abnormal isn't bad. If it is bad enough your oncologist may order a "drug holiday" to allow the liver some time to recover for a couple of weeks. It is also possible he/she may order a reduction in the dose from 250mg 2x/day to 200mg doses. I have known fellow crizotinib users whose liver seemed to adjust to the drug after a while, either after a while at a lower dose (then trying the normal one again) or after a drug holiday, but I don't make assumption about whether that is common or unusual -- you may need a crizotinib-experienced oncologist's experience on that.

Best hopes,

Craig
in PA, USA

_________________________________
Stage 4 ROS1+ [mucinous BAC] adenocarcinoma NSCLC since 2011
Xalkori (crizotinib) 5 yrs
Alimta (pemetrexed) + carboplatin (mere months)
TPX-0005 (repotrectinib) TBD (1+ years as of Fall 2018)

nikkam
Thanks for your note Craig...

Thanks for your note Craig... while the scan reports do indicate a stable situation, my mom continues to have intermittent fatigue and low appetite... her scan also indicates continued moderate PE in her right lung. We have a follow up with her Onco next week, to review her liver function test... hopefully her fatigue levels drop, and her PE will subside gradually..

And thanks for your wishes... hope you are doing well as well.

DJ

nikkam
Dear Jim / Craig - we seem

Dear Jim / Craig - we seem to be in a situation which seems conflicting... while my mom's PET Scan reports indicate a stable situation, a moderate PE in her right lung persists. Also for the past week or so, her fatigue levels are on the rise, and she spends a considerable amount to time sleeping. She has also cut down her physical activities (mainly walking) due to fatigue.

Today, we met with her Onco to review the lab work, which showed low electrolyte levels, high Gamma GT and Alkaline Phosphate levels. Her Onco feels that Crizo is not working as effectively as it should, and has suggested retesting for ALK. He is of the opinion that there is little improvement (if any), and says that a persisting PE, increased fatigue & sleep are all signs that Crizo is not working as much... in fact he feels that there could some progression (though clinically based on CT scan last 7 weeks ago, and PET scan last week, it appears there are no new lesions, and the existing ones are showing lower activity...)

So, while we may go through a retest for ALK, (not sure if this calls for a new biopsy), and she may also be in the hospital for a couple of days to stabilize her electrolyte levels, I am not entirely sure what to make out of this conflicting situation...

Any pointers by Jim / Craig / Dr. West will greatly help...

thanks much
DJ

nikkam
Dear all - any suggestions

Dear all - any suggestions to overcome stomach discomfort (read as feeling of stomach fullness due to irregular bowel movement / constipation)? My mother is on Crizo now into month 4, and is experiencing this issue. While she feels hungry, she is hardly able to eat anything. this is causing acidity, and her Crizo is further compounding the acidity issue... any pointers to overcome this will greatly help...

thanks much,
DJ

craig
craig's picture
DJ,

DJ,

When there is stomach nausea it is usually recommended not take crizotinib on an empty stomach but to have food first (or at the same time). They originally required taking pills on empty stomach but tested a high fat meal (very oily & greasy) and found that 85% of the drug was still absorbed nevertheless, which is pretty good and sufficiently effective for most.

I do not recall clearly but I thought antacids interfere with the absorption of crizotinib and are not supposed to be taken with crizotininb. However, I think I've heard of people taking acid-control medicine a couple hours before or after. In any event, consult with your doctor or pharmacist about such interactions and timing when you ask about how to treat the constipation.

(FWIW, my Dad suffers constipation from the drugs he takes (not cancer) but brought it under control with daily MiraLax with his morning juice + a twice a day Rx for Colace.

Best hopes,

Craig in PA, USA

_________________________________
Stage 4 ROS1+ [mucinous BAC] adenocarcinoma NSCLC since 2011
Xalkori (crizotinib) 5 yrs
Alimta (pemetrexed) + carboplatin (mere months)
TPX-0005 (repotrectinib) TBD (1+ years as of Fall 2018)

nikkam
Dear all - quick update... my

Dear all - quick update... my mom, currently on Xalkori, for the past four months.. she is overall stable, seems to be doing reasonably ok. Her last PET scan during June2016 indicated a stable situation. Her next scan is due early September 2016.

However, for the past couple of weeks, she has been having some dry cough.. any suggestions on what to keep an eye out for? any precautions to take? I am meeting her Onco next week, but would like to hear your suggestions please...

thanks, DJ

catdander
Hi DJ,

Hi DJ,

It's good to know your mom is responding to xalkori. Cough can be a side effect of xalkori unfortunately it's possible that that cough is a symptom of more serious side effect such as infection which is a known side effect. So it's important to contact her med care team asap so they can evaluate the situation. This mayo clinic website, http://www.mayoclinic.org/drugs-supplements/crizotinib-oral-route/side-e...

I hope your mom can continue xalkori for a long time. Please keep us posted on how the eval goes on her end.

All best,
Janine

nikkam
Dear all - met with my mom's

Dear all - met with my mom's Onco today... mom is having dry cough, which aggravated over the past few days. In addition she was having severe fatigue as well .. her Onco checked her lungs, felt there was not much air passage in her right lung (which is where her tumors are).

Decided to get a CT done. Her CT came out stable in comparison to her last PET CT on June 6, 2016. Basically there was no change .. no further shrinkage nor progression.

Her Onco felt there is no visible improvement. I pointed out that being stable itself is in a way good. fyi. she completes 4 months on Crizo tomorrow.

Onco is thinking of switching her to Certinib. He will decide in the next 3 days. I was of the opinion that continue on Crizo till progression and switch to Ceritinib at that point of time. Would appreciate thoughts of fellow ALKies here.

thanks much. DJ

craig
craig's picture
IMHO, yes, stable is great &

IMHO, yes, stable is great & what matters most is duration (progression-free survival time). On the other hand, if there is any suggestion of progression (e.g., shrinkage-then-growth that makes the scan look similar overall but changed for the worse in some places) it certainly does raise the question of whether a different drug might do better.

Statistically the 2nd generation ALK drugs like ceritinib and alectinib have pretty good odds of working against crizotinib-resistant cancer but each drug seems best for a different mutational variant of ALK or mechanism of action even if on average they all have pretty good odds (which of course means a portion of patients won't get a benefit from the drug they choose, so it might be desirable to improve the odds% by knowing as much as possible about the cancer before making a pick). So, if possible, it might be best to biopsy a sample of growing cancer and have it tested to try to determine the type of resistance that might be there and then use a drug that is not already known to be futile against that.

Depending on your particular medical situation (which your doctor should be able to assess), even if you had a choice between drugs there might be a preference for one drug or the other. E.g., if I recall correctly, alectinib seems to have a little better odds of effect against brain mets. The condition on one's liver or kidneys or risk of lung inflammation might motivate a preference. If you had biopsy results showing no particularly-stubborn mutational variant of ALK but activation of a P-glycoprotein efflux mechanism (pumping crizotinib out of cancer cells aggressively) then ceritinib might not be the best choice (http://www.ncbi.nlm.nih.gov/pubmed/26870817). If the most stubborn mutational variant of ALK is present, then a trial of (or in a couple or few months there will be compassionate use / "expanded access" trial) of lorlatinib might be a better bet.

(. . . continued next message . . .)

_________________________________
Stage 4 ROS1+ [mucinous BAC] adenocarcinoma NSCLC since 2011
Xalkori (crizotinib) 5 yrs
Alimta (pemetrexed) + carboplatin (mere months)
TPX-0005 (repotrectinib) TBD (1+ years as of Fall 2018)

craig
craig's picture
(. . . continuing . . .)

(. . . continuing . . .)

As you can see, although it might be pretty easy to just take a chance with any given 2nd generation ALK drug and not deal with specific mechanisms of resistance until you see if it's not working, you might be able to get a better match of drug & resistance if you biopsy & test first. And as you get further along you might even find it worthwhile to seek the judgement of a research-focused oncologist who sees a lot of ALK patients in trials since they'll probably have seen more patients under more conditions with more ALK drugs (including experimental ones) than your local community oncologist.

Another reason to be thoughtful & deliberate about switching ALK drugs too quickly is that in the past new drug trials often put restrictions on the number of prior inhibitors tried, e.g., no more than 2 prior ALK inhibitors or no prior other 2nd generation inhibitor. One trial (lorlatinib) even excludes people who tried immunotherapy, even though no one seems able to give a good medical rationale for why they do that (other than they might want healthier patients to improve the odds of good results rather than patients who have tried so much that they are running out of options). I know I would not like to just race through several drugs as fast as possible and then find I'm not eligible for some future miracle drug.

In my own case my ROS1+ cancer has been progressing for a year but I've stretched crizotinib an extra year so that I have better ROS1 options in my near future (e.g., trial of DS-6051 might be better for mutationally-stubborn ROS1, and the forthcoming TPX-0005 trial by the end of the year might be even better if it turns out to be tolerable in people). I'm tempted to try to hold out for TPX-0005 if I can, maybe even trying Alimta (pemetrexed) & chemo to try to hold myself over a couple of months.

Best hopes,

Craig in PA

_________________________________
Stage 4 ROS1+ [mucinous BAC] adenocarcinoma NSCLC since 2011
Xalkori (crizotinib) 5 yrs
Alimta (pemetrexed) + carboplatin (mere months)
TPX-0005 (repotrectinib) TBD (1+ years as of Fall 2018)

craig
craig's picture
P.S. -- FYI, if one had a

P.S. -- FYI, if one had a pretty good response and then found progression at just a couple of specific spots that are easily targetable with targeted radiation, it is sometimes possible to stretch the usefulness of one's ALK drug extra months by zapping / eradicating the easily targeted spots of resistance. This is not usually possible (cancer growing too diffusely or too many spots when progression is first detected), but it's nice when it can be done. If there's been no visible shrinkage on scans, I wouldn't assume this would help, but your oncologist's judgement looking at the actual scans would be a better judge than a random person mentioning what is sometimes possible in some patients.

_________________________________
Stage 4 ROS1+ [mucinous BAC] adenocarcinoma NSCLC since 2011
Xalkori (crizotinib) 5 yrs
Alimta (pemetrexed) + carboplatin (mere months)
TPX-0005 (repotrectinib) TBD (1+ years as of Fall 2018)

nikkam
Dear Craig - whew, what a

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

craig
craig's picture
It is not unusual to have

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 4 ROS1+ [mucinous BAC] adenocarcinoma NSCLC since 2011
Xalkori (crizotinib) 5 yrs
Alimta (pemetrexed) + carboplatin (mere months)
TPX-0005 (repotrectinib) TBD (1+ years as of Fall 2018)

nikkam
Dear Craig - had a follow on

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

craig
craig's picture
Her local oncologist is the

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 4 ROS1+ [mucinous BAC] adenocarcinoma NSCLC since 2011
Xalkori (crizotinib) 5 yrs
Alimta (pemetrexed) + carboplatin (mere months)
TPX-0005 (repotrectinib) TBD (1+ years as of Fall 2018)

nikkam
Dear Craig / Jim / Janine /

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

craig
craig's picture
I don't have any info about

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.

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 although there seems to have been some drifting away to facebook groups, first by the ROS1'ers like me who weren't accommodated as well there, and then ALK'ies. 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 poor (IMHO) for group discussions of details rather than short updates.

Best hopes,

Craig in PA

_________________________________
Stage 4 ROS1+ [mucinous BAC] adenocarcinoma NSCLC since 2011
Xalkori (crizotinib) 5 yrs
Alimta (pemetrexed) + carboplatin (mere months)
TPX-0005 (repotrectinib) TBD (1+ years as of Fall 2018)

craig
craig's picture
I don't have any info about

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.

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 although there seems to have been some drifting away to facebook groups, first by the ROS1'ers like me who weren't accommodated as well there, and then ALK'ies. 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 4 ROS1+ [mucinous BAC] adenocarcinoma NSCLC since 2011
Xalkori (crizotinib) 5 yrs
Alimta (pemetrexed) + carboplatin (mere months)
TPX-0005 (repotrectinib) TBD (1+ years as of Fall 2018)

craig
craig's picture
I submitted a long reply --

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 4 ROS1+ [mucinous BAC] adenocarcinoma NSCLC since 2011
Xalkori (crizotinib) 5 yrs
Alimta (pemetrexed) + carboplatin (mere months)
TPX-0005 (repotrectinib) TBD (1+ years as of Fall 2018)

craig
craig's picture
(part 1 of 2):

(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 4 ROS1+ [mucinous BAC] adenocarcinoma NSCLC since 2011
Xalkori (crizotinib) 5 yrs
Alimta (pemetrexed) + carboplatin (mere months)
TPX-0005 (repotrectinib) TBD (1+ years as of Fall 2018)

craig
craig's picture
(. . . continuing . . . part

(. . . continuing . . . part 2 of 2)

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 although there seems to have been some drifting away to facebook groups, first by the ROS1'ers like me who weren't accommodated as well there, and then ALK'ies. 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 4 ROS1+ [mucinous BAC] adenocarcinoma NSCLC since 2011
Xalkori (crizotinib) 5 yrs
Alimta (pemetrexed) + carboplatin (mere months)
TPX-0005 (repotrectinib) TBD (1+ years as of Fall 2018)

craig
craig's picture
(. . . continuing . . . part

(. . . 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-sur... ) 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 4 ROS1+ [mucinous BAC] adenocarcinoma NSCLC since 2011
Xalkori (crizotinib) 5 yrs
Alimta (pemetrexed) + carboplatin (mere months)
TPX-0005 (repotrectinib) TBD (1+ years as of Fall 2018)

craig
craig's picture
P.S. -- it looks like this

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 4 ROS1+ [mucinous BAC] adenocarcinoma NSCLC since 2011
Xalkori (crizotinib) 5 yrs
Alimta (pemetrexed) + carboplatin (mere months)
TPX-0005 (repotrectinib) TBD (1+ years as of Fall 2018)

nikkam
Dear Craig - after about 18

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

craig
craig's picture
I haven't taken ceritinib so

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 4 ROS1+ [mucinous BAC] adenocarcinoma NSCLC since 2011
Xalkori (crizotinib) 5 yrs
Alimta (pemetrexed) + carboplatin (mere months)
TPX-0005 (repotrectinib) TBD (1+ years as of Fall 2018)

nikkam
Dear Craig / Jim / Janine -

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

JimC
Hi DJ,

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

<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>

nikkam
Thanks for your response Jim.

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

JimC
Hi DJ,

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

<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>

craig
craig's picture
I'm ignorant about those

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 4 ROS1+ [mucinous BAC] adenocarcinoma NSCLC since 2011
Xalkori (crizotinib) 5 yrs
Alimta (pemetrexed) + carboplatin (mere months)
TPX-0005 (repotrectinib) TBD (1+ years as of Fall 2018)

nikkam
Dear all - my mom is now on

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

nikkam
Dear Craig, Jim and Janine -

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

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