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 1 month, 2 weeks ago.

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September 30, 2016 at 3:23 pm  #1288815    

DJ Nikkam

Thanks much Janine and Craig. You have shared some thoughts worth pondering over. I was not aware that high sugar levels could cause mild / small strokes. I will keep you all posted on the outcome of the MRI. Thanks again for the super quick responses, and have a wonderful weekend.

best regards
DJ

October 1, 2016 at 10:11 am  #1288823    
catdander forum moderator
catdander forum moderator

I should clarify the link between stroke and very high blood sugar is associated with diabetes. But diabetes can be pretty sneaky. It’s pretty unlikely, but it happened to my mom and as we’ve all learn anything is possible.

October 21, 2016 at 1:06 pm  #1288983    

DJ Nikkam

Folks – can someone help me understand this better… I got a liver function test done for my mother today… most of the values seem to be in or near the normal range, with the exception of the following:

1. ALKALINE PHOSPHATASE (AMP – PMP) – 317 u/l (normal range 35 – 105 u/l)
2. GAMMA GT (IFCC – PNPbuffer) – 527 u/l (normal range – 6 – 42 u/l)

thanks much / DJ

October 21, 2016 at 1:11 pm  #1288984    

DJ Nikkam

my mom is currently on Ceritinib – 450 mg / day… she started on Ceritinib about 2 months ago… prior to that, she was on Crizo for about 4 months… thanks / DJ

October 22, 2016 at 8:03 am  #1288987    

Craig

Your oncologist is in the best position to interpret test results and make judgements about them.

Ceritinib is often challenging to patients’ livers. Patients sometimes need a break from the drug to let their liver recover. I think the side effects are often more manageable with a reduced dose. Ask your oncologist.

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)

November 25, 2016 at 7:03 pm  #1289262    

DJ Nikkam

Dear all – my mom who is currently on Ceritinib, has developed severe itching issues and some mild localized skin rashes. We just got Liver function test last week, and her liver enzymes, though elevated, are within acceptable limits. Has anyone faced a similar issue, and if yes, how has this been controlled? Pointers will be appreciated.

Thanks much.
DJ

November 26, 2016 at 6:51 am  #1289265    

Craig

Sorry, I don’t know anything about that although I think I see some drug information online which reports rash or itching as a possible side effect. Have you seen this discussion?:

http://cancergrace.org/topic/ceritinib-and-acne

And these summary pages of information?:

https://patienteducation.osumc.edu/Documents/Ceritinib.pdf

http://www.upmc.com/patients-visitors/education/cancer-chemo/Pages/ceritinib.aspx

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)

March 14, 2017 at 7:26 pm  #1290365    

DJ Nikkam

Dear all – my mom is currently on Ceritinib for the past 6 months, and has had reasonable success on this ALK inhibitor.

About 8 weeks ago, she had a viral herpes simplex outbreak, with severe rashes on the face (more severe around the left eyebrow and several blisters on her scalp). The rashes cleared out with treatment in a couple of weeks, but she still continues to experience severe sensitivity around her left eyebrow / temple and constant headaches.

Both her Onco and her general physician have indicated that the sensitivity and headache may continue for a period of 3 to 6 months. Her last MRI around 3 months ago was clear, and the doctors believe that the persisting sensitivity and headaches are the result of the viral outbreak

Has anyone had a similar experience particularly an viral outbreak, and has had persistent headache due to this… if yes, how was this resolved, over what period of time..

Pointers will be appreciated.

Thanks / DJ

March 15, 2017 at 12:43 pm  #1290375    
catdander forum moderator
catdander forum moderator

Hi DJ,

It’s good to hear your mom is responding to ceritinib. I wish she didn’t have these awful side effects. I’m afraid I don’t have anything to offer. Perhaps someone else has been through it and will comment. It sounds like she’s moving through the appropriate channels. I will see if our Pharmacists faculty has anything of add.

I hope she feels better soon.
All best,
Janine

March 15, 2017 at 7:01 pm  #1290380    

DJ Nikkam

Thanks Janine… do let me know if the Pharmacists have pointers around this.

best regards
DJ

March 16, 2017 at 6:29 am  #1290384    
Dr Walko
Dr Walko

DJ, I agree that this sounds like post herpetic neuralgia or pain in the area where there was a herpetic outbreak. It is pretty common after shingles, which is a similar virus. The challenge with this type of pain/discomfort is that it is more of a nerve pain which is harder to treat. Unfortunately, the 3-6 month recovery window in on target. There are some medications like pregabalin (Lyrica) and gabapentin (Neurontin) that may be able to help with the nerve pain, but those can have side effects too (sleepiness, mental status changes) so it’s a risk/benefit discussion to have with your mom’s medical team.

I certainly feel her frustration though. I am very glad that the MRI was clear though, great news! I chair the Molecular Tumor Board at Moffitt Cancer Center and it’s always wonderful to hear success stories of targeted therapies.

Best wishes,
Dr. Walko

March 16, 2017 at 8:02 am  #1290387    

DJ Nikkam

Dear Dr. Walko – thanks much for taking to the time to respond.

My mom is currently taking Gabapentin 300mg twice a day. While this is helping her somewhat, she is not fully functional given the pain… It has been around 3 months since the viral outbreak, and I guess, she needs to ride this out. .. from what I have learnt sometimes this pain can persist way beyond the 3 – 6 month period.. so I guess we can only hope that this pain subsides, as the medications themselves have other side effects, besides being less effective over a period of time…

Thanks again for your response.

Rgds
DJ

April 25, 2017 at 8:33 am  #1290640    

DJ Nikkam

Dear all – will appreciate pointers. My mom who continues to be on Ceritinib, is recently going through bouts of extreme fatigue. This has been going on for about 2 weeks now.

Her sugar levels were a little elevated (around 250), but has come back to a normal range over the last day or two. All else seems normal. Her food intake is also adequate.

She meets her Onco tomorrow, but I wanted to run this, within this group, to see if anyone has one pointers to address this.

Her last PET scan in Feb 17, indicated a stable situation. She however has intermittent headaches due to a Herpes Virus outbreak that she endured in Jan 17. Her last MRI, though over 4 months ago, indicated no activity in her Brain..

Thanks much
DJ

April 25, 2017 at 8:50 am  #1290641    
JimC Forum Moderator
JimC Forum Moderator

Hi DJ,

I’m sorry to hear that your mom is suffering from such fatigue, which is a common side effect of ceritinib. As Dr. West has stated:

“Toxicity is a potential challenge, more so than with XALKORI, especially gastrointestinal issues. Nausea was noted in 82%, diarrhea in 75%, vomiting in 65%, fatigue in 47%, and liver function tests were noted to be abnormally elevated in 35%. These issues were dose-related, and many of the researchers with the greatest experience with this agent have conveyed that the dose of 750 mg daily may be too high for many people, but that they have often had a more successful balance of efficacy and tolerability after reducing the dose to 600 mg or sometimes 450 mg per day (4 or 3 tablets, respectively).”http://cancergrace.org/lung/2014/04/30/new-approval-for-zykadia-ldk378ceritinib-in-alk-positive-nsclc-why-it-matters-even-if-youre-not-alk-positive/

Of course it’s possible that the viral outbreak is playing a role, and perhaps medications she has used or is using to combat the effects of the virus. Perhaps you could discuss an adjustment in one of her medications in an effort to lessen her fatigue.

I hope she has a productive meeting tomorrow.

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

July 27, 2017 at 10:20 am  #1291135    

DJ Nikkam

Dear Jim / Janine / all – my mom is currently on Ceritinib. For the last 4 to 6 weeks, she has been experiencing severe GI issues – particularly bloating, indigestion, inability to eat much, having a fullness feeling etc. As she is unable to eat much, her energy levels are down, and fatigue is creeping in. Her last bloodwork two weeks ago, indicated her liver and other vitals are in the near normal range.

We met her Onco today, and upon examining her, he indicated that clinically she seems stable. (Her last PET was during March 17), She has been on Ceritinib for about 10+ months now, and her current dosage is between 2 / 3 tabs of 150mg each.

Her Onco indicated that the issues seemed to be arising out of drug toxicity / intolerance to Ceritinib, and has suggested a drug holiday (around 6 to 8 weeks), as he is focusing on her quality of life, based on the fact that she appears clinically stable.

He wants to do a PET scan at the end of this 8 week break, and then determine whether to get her back on Ceritinib or explore an alternate.

Just wanted to reach out to the larger group, and get additional thoughts on what would be an appropriate option at the moment?

Thanks much and sorry about the long post.

Rgds
DJ

July 27, 2017 at 7:05 pm  #1291137    
JimC Forum Moderator
JimC Forum Moderator

Hi DJ,

Although it’s good to hear that her cancer is stable, I’m sorry that your mom is having such trouble with ceritinib side effects. As has been noted previously, it can be a difficult drug to tolerate, and dose reductions are common. The experience with another targeted therapy, Tarceva, may help guide your thinking. Although the standard dose is 150 mg per day, a number of patients who are particularly sensitive to the drug, both in response and side effects, have been able to reduce all the way down to 25 mg daily with good success. So perhaps a further dose reduction is in order.

On the other hand, a treatment break can work wonders, not only physically but mentally as well. It can provide an opportunity for a more complete resolution of the side effects, allowing a return to ceritinib, perhaps with a further dose reduction.

If she does resume ceritinib, perhaps some of the ideas shared in this thread will be helpful.

I hope your mom starts feeling better very quickly.

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

August 10, 2017 at 6:05 pm  #1291235    

DJ Nikkam

Dear Jim / Janine -a quick question. Per my last update, my mom’s Oncologist, suggested a drug holiday (she is on Ceritinib) of 4 to 6 weeks, due to severe GI issues and fatigue. Given this she has stopped taking Ceritiinib, from July 27, 2017 (about 2 weeks now).

For the past few days, we have noticed that she has developed cough, along with mild intermittent fever and fatigue. While this could be the general cold / cough situation, I am concerned that the drug holiday could be causing this…

I am planning to meet with her Onco today to discuss this, In the meantime are they any signs that we should keep an out for, which indicates that the tumors are acting up, given the break from medication? Pointers will be appreciated.

thanks much
DJ

August 10, 2017 at 7:19 pm  #1291237    
JimC Forum Moderator
JimC Forum Moderator

Hi DJ,

I’m sorry to hear that your mom is suffering from these symptoms, but it’s very difficult to say whether they are cancer-related or result from some other cause. Ceritinib itself can cause cough and fatigue. Two weeks is a short time for tumors not only to grow but grow significantly enough to cause new symptoms, although cancer can do some unusual things. I think these symptoms would be most suspicious for cancer progression if they continue to worsen, so her doctor will probably want to keep a close eye on her symptoms, and if necessary move up the date for her next scan.

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

August 11, 2017 at 6:47 am  #1291239    

Craig

That sounds like something to discuss with her oncologist.

You already know the doctor will want to check for flu/cold/pneumonia. Pneumonia can definitely happen to people with lung cancer (it happened to me in fact).

Another possibility is something called TKI Flare — where the cancer cells wake up together after stopping an inhibitor drug and seem to progress very fast for a while, sometimes so badly that a patient needs to be hospitalized to save their life. TKI Flare is not typical but can happen to some patients. If it occurs it is most often about a week after stopping the inhibitor though anywhere from a couple of days to 30 days after could be possible.

Or, of course, what you’re describing might be a normal resumption of cancer activity as the cancer cells are unleashed from the inhibitor drug or something completely different that people who aren’t trained doctors aren’t aware of.

Good luck with the doctor appointment, but it might be useful to ask the doctor to check for “TKI Flare” (tyrosine kinase inhibitor flare).

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 11, 2017 at 6:29 pm  #1291240    

DJ Nikkam

Thanks for the quick responses Jim and Craig. I will certainly be discussing these points with her Oncologist next week. Hope you all have a wonderful weekend.

DJ

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