Poorly differentiated Pulmonary Adenocarcinoma – Stage IV

Portal Forums Lung/Thoracic Cancer ALK Inhibitors Poorly differentiated Pulmonary Adenocarcinoma – Stage IV

This topic contains 119 replies, has 6 voices, and was last updated by  DJ Nikkam 2 months ago.

Viewing 20 posts - 61 through 80 (of 120 total)
Author Posts   
Author Posts
May 4, 2016 at 8:39 am  #1273888    

DJ Nikkam

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

May 4, 2016 at 2:35 pm  #1273894    
catdander forum moderator
catdander forum moderator

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

May 4, 2016 at 4:11 pm  #1273896    

Craig

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 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)

June 1, 2016 at 7:40 pm  #1274201    

DJ Nikkam

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

June 1, 2016 at 9:56 pm  #1274202    

Craig

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 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)

June 2, 2016 at 5:20 am  #1274204    

DJ Nikkam

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

June 2, 2016 at 4:23 pm  #1274210    

Craig

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 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)

June 5, 2016 at 3:14 pm  #1274240    

DJ Nikkam

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

June 11, 2016 at 11:10 am  #1274282    

DJ Nikkam

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

June 11, 2016 at 11:26 am  #1274283    

Craig

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 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)

June 12, 2016 at 3:39 pm  #1274284    

DJ Nikkam

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

June 16, 2016 at 9:55 am  #1274393    

DJ Nikkam

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

July 13, 2016 at 4:01 pm  #1274650    

DJ Nikkam

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

July 14, 2016 at 9:12 am  #1274657    

Craig

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 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 8, 2016 at 8:58 am  #1287981    

DJ Nikkam

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

August 8, 2016 at 11:48 am  #1287982    
catdander forum moderator
catdander forum moderator

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-effects/drg-20075084

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

August 11, 2016 at 9:54 am  #1288015    

DJ Nikkam

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

August 11, 2016 at 1:12 pm  #1288018    

Craig

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 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 11, 2016 at 1:30 pm  #1288019    

Craig

(. . . 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 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 11, 2016 at 1:34 pm  #1288020    

Craig

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 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)

Viewing 20 posts - 61 through 80 (of 120 total)

You must be logged in to reply to this topic.