Poorly differentiated Pulmonary Adenocarcinoma - Stage IV - 1273125

129 posts / 0 new
Last post
nikkam
Poorly differentiated Pulmonary Adenocarcinoma - Stage IV - 1273125

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

JimC
Hi nikkam,

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

<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 - thank you so much

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

JimC
Hi DJ,

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

<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
Hi Jim - thanks for you

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

JimC
Hi DJ,

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

<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 all - a quick update on

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?

catdander
Hi Nikkam,

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

carrigallen
I agree with Janine. If the

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.

nikkam
Dear Dr. Ben and Janine -

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

JimC
Hi DJ,

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

<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 - thank you so much

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

nikkam
Dear Jim - thank you so much

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

catdander
DJ,

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

nikkam
Dear all - my mother is

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

nikkam
Dear Jim / Janine / all -

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

catdander
Hi DJ,

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

nikkam
Thanks for your response

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

catdander
Hi DJ,

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

nikkam
Thanks for your response

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#pos...

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

thanks much
DJ

JimC
Hi DJ,

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

<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 & Janine - I met my

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

catdander
Hi DJ,

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

JimC
Hi DJ,

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

<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 much Jim and Janine -

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

JimC
Hi nikkam,

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

<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 Jim. It has been a

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

nikkam
One other thing that I forgot

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

JimC
Hi DJ,

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

<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 Jim. At what point

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

DJ

catdander
Hi DJ,

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_...

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

I hope your mom is doing better,
Janine

craig
craig's picture
About half of Xalkori

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 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
Great advice Janine and Craig

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

craig
craig's picture
P.S., Keep in mind that stage

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 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 again. Very insighful

Thanks again. Very insighful info. Much appreciated.

Rgds
DJ

craig
craig's picture
One more thing. In another

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 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 - can someone

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

JimC
Hi DJ,

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... 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

<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 much Jim. The Nausea

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

nikkam
Dear Jim / all - while my

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

craig
craig's picture
I don't know the answer for

I don't know the answer for you but I do know that many patients who do well on crizotinib notice an improvement in symptoms within days and I've also known (online) patients who continued to have pleural effusion production while otherwise getting a good benefit.

Speaking as a fellow patient, if I were in your shoes and continuing to feel cancer symptoms, though, I would be impatient with my oncologist and seek CT or PET scan proof of benefit or not a little sooner than whatever normal is, or a re-test using FISH or gene sequencing, just in case it turns out that (1) your particular test result was a false-positive error or (2) the particular variant of your ALK driving mutation is one that requires a newer drug.

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 - thanks for your

Dear Craig - thanks for your response. I am considering a retest using the FISH framework. My mother currently lives in India, and the ALK mutation "Test was performed using the Ventana anti-ALK (D5F3) antibody (CE-IVD) on the Ventana Benchmark XT automated IHC stainer". Not sure if this is the same as FISH. Will check with her Oncologist.

I also read a few articles by Dr. Shaw. Very insightful particularly around the ALK re-arrangements.

Thanks
DJ

craig
craig's picture
DJ -- IHC tests are not FISH

DJ -- IHC tests are not FISH tests. I don't know if my understanding of IHC is up to today's technology but usually IHC is fast and cheap, and in recent years there have been some IHC tests that are about as good as the other two types (FISH and gene sequencing) when the resuslt says positive, but any test has a small risk of giving a false or misleading result. FISH potentially catches more unusual fusion partners involved in an ALK fusion rearrangement because it is just seeing if the two original halves of the gene have been moved apart rather than trying to find a specific pattern. Gene sequencing is the one that gives insight into which mutational variant of ALK is there and that can be useful if the one it finds is known to be resistant to one or more ALK inhibitor drugs you were trying or thinking of trying, but this is usually much more expensive and takes weeks and is usually best done on a biopsy sample of the portion of cancer that has been growing despite treatment.

FWIW, Dr. Shaw is my oncologist and she really is a "superdoc" in every way (including the lab team that makes her work possible) for ALK and ROS1. I'm very grateful for her and her work (as I should be). For ALK there is also superdoc Ross Camidge at U. of Colorado (incl. his team, e.g., Doebele) and he even has phone consultations available for $$$ not covered by insurance but may be cheaper than travel from far away.

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
Thanks much Craig. One

Thanks much Craig. One follow on question::: how long before one get a CT or PET scan done (although the Onco seems to prefer CT), after starting on Crizo, to see how effective it is? Is it 4 to 6 weeks?

DJ

craig
craig's picture
That would be a doctor's

That would be a doctor's judgement choice under the circumstances there, I assume. If you are feeling nice improvement she/he might say anything from 6 weeks to 3 months, I would guess. If suspect the Rx isn't working then maybe 6 weeks more or less. It can take time for CT to show measurable changes, but it exposes the patient to less radiation than PET and some prefer it (esp. in trials). PET might show you an early sign of reduced metabolic activity of the cancer before there is a measurable change to the dimensions of the cancer, but may be lower resolution -- I get the impression PET is more often used to seek cancer that metasticized to other places they otherwise might not notice it, but let your oncologist explain her/his preferences and reasons. If your pesky problem is pleural effusion, I wonder if a simple way of testing might be to draw off some of the fluid and test it to see how many cancer cells are floating in it vs. the same test done before. Ask your on oncologist.

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,

Craig beat me to the "submit" button, but here's what I wrote:

That's a pretty typical interval. It's long enough to show response, but not so long that you waste too much time on a treatment that is less than effective.

Many oncologists prefer CTs for follow-up.

As far as following progress with a CT vs PET, many oncologists prefer CT, and there is a GRACE FAQ on this subject here: http://cancergrace.org/cancer-101/2010/09/16/cancer-101-faq-assessment-r...

The conclusion is "Some people favor getting PET/CTs to clarify response in extreme detail, but there is a real risk of identifying clinically insignificant changes, such as by a minimal increase in the PET uptake of a tumor that remains stable in size, that might lead to a change in management that isn’t clearly necessary...Individual physicians have different perspectives about their reliance on PET scans and serum tumor markers in monitoring the course of a cancer, but for most solid tumors (cancers of solid organs where there is visible evidence of the cancer), changes in the size of known cancer on serial CT scans at regular intervals of follow-up remain the best studied and most validated way to assess response to treatment or monitor for progression off of treatment."

Good luck with treatment.

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 - you

Dear Jim and Craig - you folks have been awesome in providing much need clarity and insights. Thank you so much for your time and inputs.

Dear Criag - as you have been on Crizo for a substantial duration, I was wondering if you could share your experience with how you dealt with fatigue... my mother is displaying interment severe fatigue with Crizotinib. She is on 250mg x 2, daily. Her other symptoms are Nausea and intermittent vomiting which is somewhat under control with Nausea medication. FYI - she started on Crizo on 4/7/16

Thanks much. DJ

nikkam
Also a follow on question -

Also a follow on question - how long before Pleral Effusion (PE) subsides while on Crizo? My mom had her last PE drained on March 31 (they drained only about 800ml of the approx 2L that had accumulated). My mom has been on Crizo for almot 2 weeks now.. I am of the opinon that part of her fatigue could be also due to the remaining Pleural fluid in her lungs?

Thanks, DJ

craig
craig's picture
Alas, I haven't had fatigue

Alas, I haven't had fatigue on this drug. It did reduce my energy level due to, I assume, a combination of cutting my testosterone (severely) and lowering my BP & heart rate (about 10 points each). But it wasn't bad enough to worry about and I just drink more coffee than I used to. I don't recall if some patients are getting any kind of stimulants to try to compensate or not.

As to nausea, I want to remind you that many patients experience that and it usually stopped being a problem when they changed to taking their pills with food instead of on an empty stomach. When I started I was sure to take my morning pills after eating something to buffer them, e.g., shreadded wheat cereal was my preference, but a couple years later I experimented and found that I felt I was getting a little more benefit from the pills on an empty stomach and I didn't have any nausea anyway, so I continued the practice of taking my morning pills on an empty stomach and trying not to eat solid food for a couple of hours, but I don't recommend that to other people who do get nausea.

As to the pleural effusion, I'll let the docs here give their experience across more patients. If I recall correctly comments & updates from my crizotinib peers, with some it stops building fluid immediately & the built up fluid gradually reduced over several weeks, but for others it persisted (despite having good cancer control elsewhere) and they eventually resorted to have a procedure done to relieve the symptoms. (I never had pleural effusion, but I did have bronchorrhea -- fluid being produced in the lung airways, maybe an ounce a day, and it stopped [well, just a few drops] by my 2nd day on crizotinib.)

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)

JimC
Hi DJ,

Hi DJ,

With regard to the pleural effusion, I would just second what Craig has said. Response does vary quite a bit, and some patients who are responding well elsewhere in the body continue to struggle with such effusions. Two weeks is a pretty short time, so there's still a very good chance your mom's effusion will reduce. And you're absolutely right that it could contribute to fatigue, since the extra pressure on the lung makes it work harder.

Hope it clears up soon!

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 ... my mom & I, met with her Onco today... given that she had extreme fatigue, shortness of breath, along with intermittent Nausea and Vomiting, I wanted her Doc to rule out Pneumonitis. He took an x-ray, and ruled out Pneumonitis.

He also indicated that the PE had subsided since the last x-ray on 3/31. Despite her PE having reduced, my mom is having significant dis-comfort, and shortness of breath. Her Doc will perform an Ultrasound tomorrow to determine the actual amount of fluid present in her left lung, and will most likely tap some of the fluid. Otherwise he indicated that the x-ray was clean (not sure what he meant exactly).

He further added that we wait for my mom to complete at-least 4-weeks on Crizo, before considering a CT scan...

I will also check with her Onco on when he would consider an MRI to ensure we pro-actively track any signs of Brain Mets... keeping fingers crossed.

Thanks
DJ

Pages