Poorly differentiated Pulmonary Adenocarcinoma – Stage IV

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

This topic contains 119 replies, has 6 voices, and was last updated by  DJ Nikkam 4 days, 20 hours ago.

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April 3, 2016 at 5:48 pm  #1273512    
JimC Forum Moderator
JimC Forum Moderator

Hi DJ,

It is true that a change in the size of a pleural effusion is not a strong indicator of progression, especially if a follow-up CT indicates shrinkage in the size of the tumors. You can find a discussion of a similar situation (in which the follow-up scan showed improvement after treatment) here.In such a situation, a change of treatment is not thought imperative. Perhaps your mother’s oncologist feels that, with an ALK rearrangement, there is a very good option available in crizotinib, but many oncologists prefer to get the maximum benefit from each line of therapy used. In that light, if the current chemo regimen is shrinking the tumors, an enlarging pleural effusion would not necessarily be seen as dictating a change of therapy.

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

April 5, 2016 at 11:32 am  #1273520    

DJ Nikkam

Dear Jim & Janine – I met my mom’s Oncologist today. He has decided to switch from the first line Chemo (Pemex/Carbo) to Crizotinib, as she is ALK D5F3 positive

His point of view were as follows:

1. A large PE (right lung), was an indication of Progression, and by extension, he was of the opinion that the first line Chemo (Pemex/Carbo), was not working.
2. I pushed to get a CT scan done, however he indicated that the scan itself may not provide any additional info beyond what the PET already does. PET Scan was done on 2/19/16. (My opinion was a CT scan would have definitively indicated if the tumors has shrunk, stayed the same or increased in size, but he stayed with his thought process)
3. He also indicated that prior to start of the second Chemo cycle on 3/17/16, her lungs and airways sounded clear. However in approx 15 days after the second cycle, there was a large PE, indicating progression
4. He also indicated that had the ALK tests come sooner, he would have preferred to go with Crizotinib as the first line
5. For now he has suggested a course of 250mg Crizo, twice a day to begin with. Follow up is scheduled 15 days down the line, and a liver performance test has been requested

My mother still has a substantial amount of PE in her right lung.. her Onco has suggested that if Crizo works as intended, he expects to see reduction on PE. Till such time, any increased PE, will be handled via Thoracentesis

While my mother is otherwise visibly normal, she continues to display breathlessness due to PE in her Pluera. Fatigue associated with PE also is apparent. Also while she does feel hungry, she seems unable to eat much… she stays more on fruits and fluids…

I am hoping for the best.

Please do share your thoughts and views on the current approach…

best regards
DJ

April 5, 2016 at 2:56 pm  #1273521    
catdander forum moderator
catdander forum moderator

Hi DJ,

I certainly see his point of view that a worsening of cancer symptoms a week or so after 2nd cycle isn’t a good indication that things are moving in the right direction. Since a first line platinum doublet should pack such a powerful punch you wouldn’t expect her to get worsening cancer symptoms.

There just isn’t a definite recipe for treatment in a case like this or most lung cancer settings and changing to crizotinib makes sense. Crizotinib can be extremely effective for months or even years and there is already a second generation option waiting in the wings.

From a patient’s point of view a cancer center is a life support, however ask anyone who’s gotten chemo in one and they will give you a dozen reasons why a pill taken at home is better than IV chemo taken at the cancer center. Plus side effects are usually much easier to deal with.

I think you could argue the scanning issue but it doesn’t seem to be the battle that needs to be argued here.

I hope your mom does very well for a very long time.

Janine

April 5, 2016 at 7:09 pm  #1273524    
JimC Forum Moderator
JimC Forum Moderator

Hi DJ,

I tend to agree with Janine. Even though it would certainly be reasonable to continue with two more cycles of the current regimen, since there is doubt about its efficacy, a change to a targeted therapy which provides a very good chance of success given the presence of the ALK rearrangement, switching to crizotinib is a quite reasonable choice. Much of the response to first line chemo is seen as a result of the first two cycles, and your mom has received those two rounds. And if there is real progression, switching now gets your mom started on a new treatment which, as Janine stated, hopefully will be effective for a long time.

Oncology is an art as well as a science, and there usually aren’t right and wrong choices between reasonable alternatives.

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

April 7, 2016 at 1:38 pm  #1273538    

DJ Nikkam

Thanks much Jim and Janine – my mother started on Crizo today (4/7/16): 2 capsules of 250mg,per day. We will need to wait for a week or two to be able to assess the side effects. Being cautiously optimistic.

I have read that Crizo is somewhat limited in preventing Brain Mets, but has otherwise shown good response in clinical trials for Stage IV NSCLC. Considering that my mom had 2 rounds of Pemex + Carbo, would this in anyway help control Brain Mets, as the Chemo may have targeted some of the cancerous cells in the blood stream or does Chemo also have limitations in crossing the Blood-Brain barrier?

Appreciate your thoughts around this.
DJ

April 7, 2016 at 3:50 pm  #1273543    
JimC Forum Moderator
JimC Forum Moderator

Hi nikkam,

It’s true that with crizotinib, which has proved quite effective for patients whose cancer is driven by an ALK rearrangement, the first signs of progression are often in the brain. Most anti-cancer drugs have at least some difficulty penetrating the blood-brain barrier, although there has been a bit of evidence that Alimta may be a bit more effective. It is certainly possible that the chemo successfully prevented cancer cells from reaching the brain, but if cancer cells remain elsewhere, there is still the chance they will reach the brain.

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

April 9, 2016 at 6:50 pm  #1273557    

DJ Nikkam

Thanks Jim. It has been a few days now since my mom started on Crizo (250mg twice a day). Her side effectsare as follows:

1. Nausea
2. Occasional vomiting (once so far)
3. A feeling of tightness in the chest (more like chest pain)
4. Stomach pain
5. Possible constipation
6. Feels hungry, but unable to eat much

Her fatigue is not all that bad.. she is able to walk for about half a kilometre everyday…

Will keep her doctor in the loop… just wanted to post this, and see what others on Crizo are experiencing.

DJ

April 9, 2016 at 6:53 pm  #1273558    

DJ Nikkam

One other thing that I forgot to call… she is complaining of mild headache on and off.. am not sure if this from Crizo, or possible Brain Mets… any specific signs that I need to keep an eye out for which will indicate Brain Mets?

thanks
DJ

April 10, 2016 at 6:12 am  #1273561    
JimC Forum Moderator
JimC Forum Moderator

Hi DJ,

Although headaches can certainly be caused by brain mets, the mild, off and on type you describe aren’t the kind that are typical. And if they are relieved by acetaminophen or other pain relievers, they’re also not likely to have brain mets as their source. More severe headaches, focal weakness, double vision and seizures are symptoms to look for.

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

April 10, 2016 at 8:45 pm  #1273566    

DJ Nikkam

Thanks Jim. At what point should an MRI be considered to ensure we catch any early signs of Brain Mets?

DJ

April 11, 2016 at 1:41 pm  #1273572    
catdander forum moderator
catdander forum moderator

Hi DJ,

This is a question many people taking crizotinib have. Studies show crizotinib has efficacy in the brain for some people but not as large a percentage as the 2nd generation of ALK inhibitors. Still some people certainly have efficacy in the brain with crizotinib. Unfortunately we don’t know who those people are going to be.

The standard of care is to do an MRI of the brain at diagnosis then only if symptoms occur. However with more people able to control cancer in the rest of the body for longer periods of time the brain can become a sanctuary site for cancer.

Dr. Horn in her recent video stated she does MRI scans for those with known brain mets as often as she does chest scans. She didn’t however suggest she would scan the brain for those without known brain mets. The link to this video is pasted below. The discussion details the stats for ALK inhibitors’ efficacy in the brain. If you’ve not watched it it will certainly be helpful.

http://cancergrace.org/lung/2016/01/03/ar_2015_horn_blood_brain_barrier_alk/

For an answer to your question I’ll see if Craig can comment.

I hope your mom is doing better,
Janine

April 11, 2016 at 5:30 pm  #1273574    

Craig

About half of Xalkori (crizotinib) patients see their progression as brain mets, as you’d imagine given only 0.3% of the blood level of the drug penetrates a healthy blood-brain barrier. Sometimes it works on existing brain mets in crizotinib-naïve patients, but that’s a risky gamble when time is short.

As a patient on Xalkori (crizotinib) for 4.5 years, I am a fan of proactive periodic brain MRI’s in most (not all) crizotinib patients. I think it’s reasonable to push for scans at least every 6 months (or maybe every 6 after the 1st 10-12 months). Many patients get them every 4 months (great!) and some more often (e.g., if had brain mets before). In the past, it didn’t matter given survival was only a year anyway, but new ALK drugs can give us years.

I’m a fan of scans because (1) early treatment of brain mets might enable potent targeted radiation rather than riskier WBR, and (2) I have read patients report “suddenly” having brain mets or lepto (even just 2 months after a prior brain scan) and (3) I have also known people whose brain mets or lepto (leptomeningeal carcinomatosis) excluded them from promising drug trials that could have extended their life. Trials of experimental ALK drugs that are already showing evidence of being able to penetrate the brain aren’t as restrictive as they used to be, but there still may be a lepto exclusion sometimes.

On the other hand, in my case I have a mBAC-like adenocarcinoma (slow & not spreading outside the lungs), so the odds seem pretty low it’d spread to my brain or grow quickly between scans. So it makes sense that my onc scans me only annually (and I wonder if she’d order them at all if I weren’t one of the first dozen crizotinib-for-ROS1 trial participants). Yet I knew an ALK+ patient diagnosed by biopsy with mBAC subtype adenocarcinoma whose cancer nonetheless spread to her brain proving “low odds” still means “it does sometimes happen.” So I’m grateful to get scanned periodically.

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)

April 11, 2016 at 6:51 pm  #1273575    

DJ Nikkam

Great advice Janine and Craig. We will factor this in during our next discussion with the Oncologist.

Thanks much for your time in provide much needed clarity

Best regards
DJ

April 11, 2016 at 8:06 pm  #1273577    

Craig

P.S., Keep in mind that stage 4 patients with a very useful driving mutation seemed to have a 30% chance of surviving 5 or more years according to one source I read a couple years ago, a huge change from the 1-2% odds of several years prior. So it might be a change for your oncologist to have to think of how to avoid or mitigate dangers that might suddenly shorten the possibility of a 5+ year run to only months left.

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)

April 11, 2016 at 11:23 pm  #1273578    

DJ Nikkam

Thanks again. Very insighful info. Much appreciated.

Rgds
DJ

April 12, 2016 at 6:35 am  #1273579    

Craig

One more thing. In another discussion elsewhere someone who had just visited ALK & ROS1 superdoc Alice Shaw said that in his case where crizotinib achieved NED (no [scannable] evidence of disease) she recommended CT scans every 3 months and brain MRI’s every 6-9 months. Of course, you case can be much different. I’d assume that NED makes brain mets a little less likely, but not necessarily so, so I wonder if that’s why she said 6-9 rather than 6 months or if there were other reasons? I don’t know.


- 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)

April 13, 2016 at 12:06 pm  #1273583    

DJ Nikkam

Dear all – can someone suggest a remedy to control nausea and vomiting, while on Crizotinib? My mother is having sustained nausea and intermittent vomiting since the time started on Crizo, which was from April 7, 2016. Also any thoughts on how she could increase her intake? She is hardly able to eat, and with the intermittent bouts of vomiting, what little she is able to eat, is also not retained… appreciate pointers pls.

Thanks much
DJ

April 13, 2016 at 12:43 pm  #1273584    
JimC Forum Moderator
JimC Forum Moderator

Hi DJ,

I’m sorry to hear of your mother’s problem with nausea and vomiting. If she doesn’t already do so, taking an anti-nausea medication (such as Zofran) on a schedule, rather than waiting for nausea to develop first, can be very effective. It’s harder to get rid of than it is to prevent. It may be that preventing the nausea and vomiting may help bring back her appetite. Also, eating small amounts of food frequently is better than larger portions, and you may need to experiment to find foods that are appealing (and you may need to think outside the box; a number of GRACErs have settled in on some pretty strange choices!) Don’t worry so much about balanced nutrition at this point; getting in calories is important now. One of the fortified drinks such as Boost or Ensure may help.

My wife’s chemo nurse also suggested taking a walk to reduce nausea, and that did seem to help.

It’s also possible that her current anti-nausea medication just isn’t working well for her, so you may want to talk to her doctor about an alternative. Dr. Harman discusses various remedies for nausea here: http://cancergrace.org/cancer-treatments/files/2012/08/Dr.-Harman-Nausea-Transcript.pdf and Dr. West discusses the use of acupuncture here: http://cancergrace.org/lung/2007/11/25/acupuncture-for-nv/

Good luck with solving that vexing problem.

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

April 14, 2016 at 6:56 pm  #1273594    

DJ Nikkam

Thanks much Jim. The Nausea is much under control with the suggested medications. She is now feeling fairly fine, with the exception of intermittent cough, (sort of dry cough with occasional phlegm build up) … will follow up with her Onco.

DJ

April 15, 2016 at 9:29 am  #1273609    

DJ Nikkam

Dear Jim / all – while my who is currently on Crizotinib, has managed to handle the side effects reasonably well, she is displaying fatigue and to some extent breathlessness, which I believe is caused by PE. Am trying to understand, if and when her PE will subside, which my understanding will be an indication of how well she is responding to her current treatment approach? Can anyone who is currently in a similar situation pls share their experiences as well?

thanks
DJ

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