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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March 3, 2016 at 3:47 am  #1273125    

DJ Nikkam

Dear all – my mother aged 66, has been diagnosed with Poorly differentiated Pulmonary Adenocarcinoma of the lung. Her PET Scan findings are as follows:

– Moderate right pleural effusion with passive collapse of the underlying lung
– 1.9 x 1.6 cm metabolically active lobulated soft tissue lesion in the anterior segment of the right upper lobe – ? the primary focus of neoplasm
– Metabolically active focal lesions in the collapsed right lower lobe and right middle lobe – ? synchronous primary foci v/s metastases
– Metabolically active right lower peribronchial, right hilar, subcarinal, precarinal, pretracheal, right paratracheal and right anterior supradiaphragmatic lymph nodes – metastatic
– Multiple soft tissue nodules along the right parietal and visceral pleura – metastatic
– Subtle soft tissue nodularity of the left pleural reflection, interval follow up is recommended
– Metabolically active focal lesions in the left proximal humerus and proximal sternum – metastatic

We tested for EGFR and ALK mutation. EGFR came negative, while ALK D5F3 was positive.

Her doctor has started first line Chemo – Pemetrexed (900mg – Day1) + Carboplatin (530mg – Day 2) and Pegrafeel on Day-3. She is also prescribed Decmax, Folic acid and Pan D for 5 days to control the side effects.

She has completed first cycle, and she has handled the treatment rather well, and her symptons have subsided. Her Doctor has indicated that he would like to continue the first line Chemo for 4 cycles and switch to oral meds since she is ALK positive.

Am looking to hear from other in a similar situation, on the treatment approach taken. Any pointers for clinical trials for Alecnitib that she would be eligible for, would also be appreciated.

thanks much
DJ

March 3, 2016 at 8:23 am  #1273128    
JimC Forum Moderator
JimC Forum Moderator

Hi nikkam,

Welcome to GRACE. I am sorry to hear of your mother’s diagnosis, but it’s good to learn that her symptoms have improved and that she’s tolerating treatment well. It’s also great that she is ALK positive. As you know, that predicts a good response to ALK inhibitors such as Xalkori (crizotinib), which would usually be the choice for first-line therapy, but since she seems to be doing well with carbo/pemetrexed it makes sense to finish with that regimen.

You can search for trials at clinicaltrials.gov (even though it’s U.S. based, it lists trials worldwide), although the current thought is to start with crizotinib and move on to a next-generation ALK inhibitor if acquired resistance develops.

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

March 3, 2016 at 5:57 pm  #1273136    

DJ Nikkam

Dear Jim – thank you so much for your response. Truly appreciate you taking the time to share your perspective. One of the key reasons we started on Carbo / Pemetrexed as a first line, was due to delays in getting test results for EGFR and ALK tests. (the hospital lost the first tissue sample, and we had to re-biopsy, adding to delays). Since starting the first cycle on Feb 25, 2016, my mother has shown reasonable improvement in terms of symptoms viz., persistent cough, fatigue and to some extent breathlessness (primarily caused by Pleural effusion, – for which we had done one tapping of the pleural fluid). Her second cycle is due on March 17, 2016, and I was wondering if it makes sense to discuss with her doctor, about the potential of starting oral meds, in-between the chemo cycles. She is otherwise healthy, and has remained positive, with a strong will to take this head-on. Looking forward to your response Also I spent some time reading about your life experiences – truly inspirational.

Thanks much
DJ

March 4, 2016 at 8:03 am  #1273138    
JimC Forum Moderator
JimC Forum Moderator

Hi DJ,

It’s not uncommon at all to avoid the delays in molecular testing and begin chemotherapy, so the plan of action in your mother’s case makes perfect sense.

There are some pretty good reasons not to add an oral ALK inhibitor while your mother is on chemo. First, it’s not clear that there would be an increased benefit, and there is the possibility that the two could interact negatively, with one actually diminishing the effect of the other. Also, if only one of them is providing a benefit, it’s impossible to know which one.

Also, as Dr. West has often said, treatment of stage IV lung cancer should be a marathon, not a sprint. So we seek to get the most benefit from each therapy used. That’s one of the reasons to start with a first-generation ALK inhibitor (in your mother’s case, after her chemo) then switch to a later-gen inhibitor when resistance develops; you get the full benefit of each.

And thank you for your kind words; despite the trouble I’ve been through, I feel extremely fortunate.

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

March 6, 2016 at 6:03 pm  #1273160    

DJ Nikkam

Hi Jim – thanks for you response. This helps

While my mom is doing generally fine, after the first Chemo cycle (first cycle on 2/25/16, and second cycle scheduled on 3/17/16). However one side effect this is persisting is her mouth sores. While i will discuss this with her doctor on this issue, am wondering if there is anything that she could do to control and relieve this side effect. Any pointers will be appreciated.

thanks much
DJ

March 7, 2016 at 8:53 am  #1273165    
JimC Forum Moderator
JimC Forum Moderator

Hi DJ,

Although there’s no documented clinical trial evidence for it, in a previous discussion the suggestion was made that sucking or chewing on ice chips during the infusion may help prevent mouth sores, and GRACE faculty felt there might be a good reason that might work.. -http://cancergrace.org/forums/index.php?topic=3372.0

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

March 21, 2016 at 1:52 am  #1273348    

DJ Nikkam

Dear all – a quick update on the mother’s progress so far:::

– My mother (66 yrs, diagnosed with Pulmonary Adenocarcinoma, IV) on Feb 15, 2016 with substantial Pleural effusion in right lung. Primary in lung, with lymph nodes in the mediastinal region + lesion in left forearm. See my first message for detailed PET scan findings
– Subsequently tested for EGFR and ALK mutations
– EGFR test was negative. ALK D5F3 tested positive
– As the gene mutation test process was taking long, her Doctor decided to start first line Chemo
– First cycle of Pemetrex (900mg) + Carboplatin (530mg) administered on Feb 25, 2016. At first cycle, the amount of Pleural fluid in her right lung was indicated at 460ml
– Side effects after first Chemo were thankfully mild, with mouth sores and some discomfort in stomach
– Her persistent cough subsided dramatically, besides reduction in Pleural effusion.
– Second cycle of Pemetrex (900mg) + Carboplatin (530mg) administered on March 17, 2016
– Her Doctor indicated that her lungs sounded clear, and her airways did not indicate any congestion, He also indicated that the Pleural fluid in her right lung had reduced. She has not complained of any breathlessness indicating that the fluid accumulation has subsided.
– Based on her overall condition and the fact that she did not show much toxicity, combined with significant improvement in her symptoms, her Doctor felt that the treatment path seemed appropriate.
– She is scheduled for her third Chemo cycle on April 7, 2016.
– Her Onco has indicated that after the third cycle, she will need a CT scan to evaluate the situation
– Her Doctor is thinking of continuing upto 4-cycles of Chemo (Pemetrex + Carbo), and then switch to Oral meds since she is ALK D5F3 positive

My question is — she seems to be responding reasonably well to the first line treatment (Chemo). Does it make sense to switch to second line (orals – most possibly Crizotinib, as she is ALK+) or stay on Chemo?

March 21, 2016 at 9:16 am  #1273352    
catdander forum moderator
catdander forum moderator

Hi Nikkam,

Welcome to Grace. Following Jim’s first response, oncologists tend to stay with a treatment that is working and not causing significant side effects. Particularly alimta for those who have the alk mutation seems to work very well. Also oncologists and their patients have a choice to continue alimta (or other non platinum based chemo) after 4 rounds of platinum doublet or take a break until 2nd line treatment is needed.

Continuing with alimta without a break after 1st line is called maintenance treatment. Taking a break after 1st line was standard up until 8 or so years ago. Maintenance treatment became a standard after trials suggested people did better with ongoing treatment. However many oncologist (even some who researched maintenance treatment) now believe that if that same patient is watched closely (reporting symptoms and getting regular scans) can do just as well with the break after 1st line.
Switching to crizotinib after first line treatment without a break is called switch maintenance and is used as well.

http://cancergrace.org/lung/tag/switch-maintenance/

Staying with alimta, changing to crizotinib, and taking a break are all reasonable choices. A lot depends on how the patient feels about it and how well the oncologist feels the patient will do with it. As a matter of fact a lot of treatment decisions moving forward will have that tagline, “it depends”, which is why many people feel oncology is as much art as science.

I hope your mom does very well for a very long time,
Janine

March 27, 2016 at 12:37 pm  #1273409    

Dr. Ben Creelan

I agree with Janine. If the CT scan shows a good response to Carbo/Alimta, then switching to maintenance Alimta seems to be ideal. She could potentially stay stable on the Alimta with good quality of life for years. It is nice to save the Xalkori pill in your back pocket, to start once there is a hint of tumor recurrence; otherwise you won’t know if it is working or not. Our philosophy is to try to extend the benefit of each therapy for as long as possible, providing her quality of life is intact.

March 27, 2016 at 3:54 pm  #1273412    

DJ Nikkam

Dear Dr. Ben and Janine – thank you for taking the time to respond to my query. It is good to know that continuing on Alimta as a maintenance second line is an option, should the CT scan a good response. My mother is scheduled to undergo her third cycle of Alimta + Carbo on April 7, and this will be followed by a CT scan. I will certainly post updates on how her CT scan results turn up. Also a quick question. What is the standard for a follow up scan – is it CT or PET? She had a PET scan earlier which gave intricate specifics about her condition. Appreciate pointers on this.

best regards
DJ

March 27, 2016 at 4:56 pm  #1273413    
JimC Forum Moderator
JimC Forum Moderator

Hi DJ,

Although some oncologists like to use PET for follow-up, most oncologists prefer CT, which provides higher resolution images, even better than the CT portion of a combination PET/CT. That higher resolution provides the best comparisons in the size of tumors over time. PET, which shows hypermetabolic activity throughout the body, is good for staging, in order to highlight areas where there might be distant spread of cancer. That activity may represent inflammation or infection, but once cancer has been diagnosed, the best way to judge if progression has occurred, aside from clinical examination of the patient, is to look for growth in existing tumors, or the appearance of new nodules.

You may find this FAQ on methods of assessing response to therapy helpful.

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

March 28, 2016 at 7:07 am  #1273419    

DJ Nikkam

Dear Jim – thank you so much for your response. The article provides clarity in terms of CT over PET. My mothers onco is indicating CT scan for now, and I will probably align to that.

I had a follow on question, that I am hoping you may be able to provide some insights. My mother is demonstrating typical side effects – fluctuating fatigue levels, varying sugar levels, mouth sores, reduced appetite, which are all expected side effects. However she is also complaining of some congestion in the chest region. (not breathlessness.. more like a heavy / weighty feeling in the chest). She is otherwise breathing fine, sleeping well.. any thoughts on what could be causing this? We will follow this up with her Onco, but he is out this week.

Thanks much for your time on this
DJ

March 28, 2016 at 7:07 am  #1273420    

DJ Nikkam

Dear Jim – thank you so much for your response. The article provides clarity in terms of CT over PET. My mothers onco is indicating CT scan for now, and I will probably align to that.

I had a follow on question, that I am hoping you may be able to provide some insights. My mother is demonstrating typical side effects – fluctuating fatigue levels, varying sugar levels, mouth sores, reduced appetite, which are all expected side effects. However she is also complaining of some congestion in the chest region. (not breathlessness.. more like a heavy / weighty feeling in the chest). She is otherwise breathing fine, sleeping well.. any thoughts on what could be causing this? We will follow this up with her Onco, but he is out this week.

Thanks much for your time on this
DJ

March 28, 2016 at 8:57 am  #1273421    
catdander forum moderator
catdander forum moderator

DJ,

New or worsening symptoms need to be addressed to her oncologist. It could be many things including more pleural effusion or tumor tissue breakdown but it’s important to let her care team be aware in case of any immediate concerns.

I hope she does well,
Janine

March 30, 2016 at 10:50 pm  #1273469    

DJ Nikkam

Dear all – my mother is scheduled for 3rd cycle of Chemo – Pemetrex + Carbo on April 7. However for the past few days, she is experiencing sustained levels of fatigue, breathlessness even with little exertion, followed by mild swelling around the face / neck area. My fear is that this is indicating SVC syndrome.

She has a follow up visit with her Onco today. In the meantime, I wanted to seek thoughts from the larger group on the following questions::

1. She has completed two Chemo cycles (Feb 25 and March 17).
2. Given that she has completed two cycles, a fair expectation is that the tumors should most likely shrink (subject to verification by CT)
3. If the tumors have shrink, then logically speaking she should not display symptoms for SVC syndrome
4. If she is diagnosed now with SVC, then the bigger question is, does it mean that the treatment approach (first line) is perhaps not as effective as what we had hoped for.

Any pointers will be appreciated

thanks
DJ

March 31, 2016 at 1:27 pm  #1273473    

DJ Nikkam

Dear Jim / Janine / all – further updates, post her visit to Onco:::. (as told to me by my brother)

1. We found out that her symptoms (fatigue, breathlessness) was due to Pleural effusion
2. The Doctor ruled SVC. X-ray indcated substantial amount of fluid in her right lung
3. An Ultrasound was performed and around 2000ml of Pleural fluid had accumulated
4. The Pleural fluid had a brownish tinge
5. The Doctor decided to drain out only 850ml, I was not very sure as to why the entire fluid wasn’t drained, however the Doctor apparently conveyed that draining the entire accumulted fluid may cause some problems (not sure what thought)
6. Further the Doctor indicated that the first line (Pemetrex + Carbo) has not worked. This has been a big surprise for us
7. Her Onco is now thinking of switching her to Oral meds, since she is ALK D5F3 positive. I am thinking most likely Crizotinib

I have an appointment with her Onco on Tuesday, to determine the next course of action in her treatment plan. However i am not sure if there are any other options other than Crizotinib for now.

Some queries that i am looking for answers – is it possible that for Stage IV Adenocarcinoma, that a combination of Pemex + Carbo might not work? Alternately is it possible for a mis-diagnosis (meaning it could be a different type of malignancy)?

Is her Onco right to consider a change of approach in treating her condition?

As always, thoughts & pointers are greatly appreciated.

Thanks
DJ

March 31, 2016 at 1:28 pm  #1273474    
catdander forum moderator
catdander forum moderator

Hi DJ,

I’m sorry your mom is feeling bad. Unfortunately as more cycles are given worsening fatigue is expected. If she is having trouble breathing it’s important to call or see the doctor right away. Otherwise getting breathless from even just a little exertion maybe normal but that should be discussed with her care team to make sure.

Edema/swelling is a common side effect of chemo and likely not associated with SVC syndrome. SVC syndrome is only seen in about 3% of people with lung cancer. If it’s decided (usually by CT) that she has it her oncologist may have her seen by a radiation oncologist.

It’s pretty common not to see results from first line chemo until about 3 or 4cycles but your concerns are certainly something to be brought up in her next appointment.

I hope you mom is feeling alright otherwise.
All best,
Janine

March 31, 2016 at 10:32 pm  #1273483    

DJ Nikkam

Thanks for your response Janine.

As I outlined in my earlier note, Doctors have ruled out SVC. However there was a large Pleural effusion in my mother’s right lung, after two cycles of Chemo (Pemex/ Carbo). Doctors are now evaluating a change of course in treatment option. My question is does a large “Pleural effusion” indicate that the first line chemo approach has failed? Also the Doctors did not drain the entire fluid accumulation (only 850ml of the 2000ml was drained out)… am wondering why…

What does a change in treatment option mean? She is ALK D5F3 positive…

Appreciate your views..
DJ

April 1, 2016 at 2:25 pm  #1273491    
catdander forum moderator
catdander forum moderator

Hi DJ,

Unfortunately everyone doesn’t respond to our best chemo options.

It’s not uncommon to have a pleural effusion that is loculated, meaning the fluid is suspended in separate pockets. For each pocket there would need to be catheter put in; each cath is invasive, painful to put in and runs the risk of pneumothorax. If this is the case it would make sense to drain just part of it, enough to feel better.

It’s possible and believable the oncologist is afraid the PE will become worse if a change isn’t made. A switch to crizotinib would be considered the primary choice for next line treatment for ALK rearrangements.

All best,
Janine

April 3, 2016 at 2:53 pm  #1273508    

DJ Nikkam

Thanks for your response Janine. I was reading a post by Dr. West, where it indicates a worsening situation in PE does not necessarily indicate progression…

http://cancergrace.org/topic/chronic-cough-and-difference-of-opinion#post-1261710

What is not clear is, does this warrant a change in treatment approach?

thanks much
DJ

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