1st Line Treatment – MEDI4736 + tremelimumab or Chemo or Others??

Portal Forums Lung/Thoracic Cancer NSCLC Stage IV NSCLC 1st Line Treatment – MEDI4736 + tremelimumab or Chemo or Others??

This topic contains 33 replies, has 5 voices, and was last updated by  onthemark 4 days, 12 hours ago.

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September 1, 2017 at 12:53 am  #1291348    

mikelauwy

Hi All

First of all, my mom has recently past her one year mark from the date of diagnosis, which was out of our thoughts at the early days. I would like to think Jim and others for their support (both in knowledge and mental relief) throughout the year.

My mom has finished her last (6th) round of [ Paclitaxel + Carbo ] in end of July, and from mid Aug, she started to have infrequent cough again and the latest CEA test suggested a rise from ~2900 to ~3900, which is again near the level at her initial diagnosis (~4500). Our doctors at public sector stay on their previous suggestion to rest and even if a future scan confirm disease progression, they seems reluctant to provide further chemo treatment (of any type) and may consider palliative care only.

However, we just got an update from our previous mutation test for uncommon mutations that my mom’s was indeed having HER2 exon 20 mutation. From my understanding, there are no approved therapy specifically for HER2 mutated NSCLC patients, and there is no clinical trials for HER2 NSCLC in my area. Our doctor at private sector suggested to pursuit off-label treatment by T-DM1 or Afatinib if disease progression is confirmed. The doctor prefers T-DM1 as the results for a trial announced in ASCO 2017 suggested a better response rate and less side effects than Afatinib, but it seems the figures for both medicine are not representative due to limited participants in the trials.

September 1, 2017 at 12:54 am  #1291349    

mikelauwy

(continued)

My mom is still having good performance status (e.g. she can go up/down stairs and perform household work) so I think it may not be the time to give up cancer controlling treatments like the pubic sector advised. And it may be difficult to pursuit off-label treatment in public sector so we may need financing to have them in private sector. Do you have any information on my odds in having the below treatments? Is it possible to try one first and switch to another?

1. T-DM1
2. Afatinib
3. Gemzar (I noticed forum member scohn’s wife, also HER2 mutant, is going to have it)

Or is it a sensible choice to have palliative care only as she already had 3 lines of treatment so the chance of disease control does not justify the potential side effects any more?

Thanks again for all your support.

– Mike

September 1, 2017 at 12:38 pm  #1291354    
catdander forum moderator
catdander forum moderator

Hi Mike,

It’s my understanding that in the rest of the world drug prices are a small fraction of what they are in the US and T-DM1 and afatinib are probably too expensive to pay out of pocket. A call to the drug company can help figure out if you have private pay options. Gemzar is an older and much much less expensive (read, not under patent) drug that you may be able to talk your mom’s public onc into providing. It’s unusual today to find an oncologist who refuses 2nd line treatment to a person who is functioning as well as you say your mom is. If your mom is still willing and able to take 2nd line treatment there is no reason not to. I’d be very clear with the onc about that.

The following links are to posts about 2nd line treatment and maintenance vs waiting until clear progression. Many onc prefer to wait, giving patients time to rest and heal from the platinum doublet These oncologists believe the data aren’t accounting for the many who progressed to a point where they were too sick to withstand treatment, preferring to scan every 12 weeks or so to catch the cancer in time.

http://cancergrace.org/lung/2010/10/04/lung-cancer-faq-2nd-line-nsclc-option/

http://cancergrace.org/lung/2010/09/24/lung-cancer-faq-im-coming-to-the-end-of-my-first-line-chemo-for-advanced-nsclc-after-4-or-6-cycles-are-done-should-i-take-a-break-or-continue-with-some-form-of-maintenance-therapy/

I hope this is helpful.
All best,
Janine

September 2, 2017 at 8:54 am  #1291360    
JimC Forum Moderator
JimC Forum Moderator

Hi Mike,

I completely agree with Janine in that, if your mom feels well enough to seek additional treatment, then absent a very strong reason given by her oncologist to the contrary, her wishes should be respected. One such reason might be that if the previous regimen has depressed blood counts, a treatment break might be in order to allow those counts to rebound. But that’s completely different than just stopping anti-cancer treatment completely.

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

October 10, 2017 at 3:57 pm  #1293293    

scohn

Hi Mike.

It’s been a busy moth, so I didn’t see this post until now. I will post the results of our latest CT scan (my wife took one today) as soon as I know it, but I just wanted to mention a couple of things.

When my wife was removed from the trial study for the PTK7-targeted drug, both the trial oncologist and our regular oncologist said that in general they had not been seeing very great results with the afatanib, and had a lot of side effects with it, so it is still a possibility, but we are holding off on it until later.

I also saw the ASCO results for T-DM1 against HER2, and will likely ask our oncologist about it sometime to see if it could be one of our future choices.

The Gemzar has seemed to be very mild in side effects, EXCEPT phlebitis. My wife’s arms are now both sore from the Gemzar treatments, one arm several days ago and the other arm about 10 days ago. She puts warm compresses on both arms each night for a while which seems to help, but it has seemed to help with the hip pain, so we hope it is working.

As for lines of treatment – my wife is currently on her 4th (or 5th) line of treatment (depending on if you consider the Alimta maintenance a separate line or not) and we know of at least two approved drugs and one trial drug that are available in the future if this line doesn’t work. I agree with Jim and Janine, as long as reasonable treatments are available, and your mother wants to do it, I would hope they would support her.

But most of all I wanted to send my hugs, and thoughts, and prayers for your Mom and your entire family.

All the best, scohn


Wife, lifelong non-smoker, dx 4/24/15 adeno NSCLC stage IV-2 bone mets, 1 lymph node. HER2 Exon 20 mutation. 6x Carbo/Alimta – >50% reduction in primary tumor, lymph nodes, & bone. Alimta maint. not effective -growth & new liver mets. 11/15 – Opdivo; Not effective-add’l growth. 4/16 – PF-7020- large reduction of tumor and mets. 11/16-mixed results, liver mets stable. 2/17-All Stable. 8/17- Add’l growth-off Pfizer trial, 9/17 Gemzar- reduction then stable. 8/18 – Mixed results – new treatment?

October 12, 2017 at 8:20 am  #1293310    

mikelauwy

Hi Scohn

Many thanks for your input. And it’s good to have virtual hugs from patients and care takers sharing the same sub-type of cancer. My mom was always asking different doctors and oncologists if she was the only one having this HER2 mutation NSCLC in the whole city/state. I’ll let her know you as it counts knowing there are others in same situation striving to survive.

It’s be a while and my mom’s CT scan done in mid-Sep has confirmed disease progression, which is what we expected given her worsening cough and reduced appetite. We agreed with the doctors at private sector to put her on Afatinib, and she started on 5 Oct, with 30mg per day as starting point and switch to 40mg at end Oct if the side effects are tolerable. She is having diarrhea starting from the 4th day, and mild rash since today, which both are tolerable and can be treated with medicine. But what affected her most was the inflammation in the mouth and tongue since yesterday, which further affected her appetite. We need to find soft/liquid food for her.

But disease-wise she herself feels having more energy, and we feel her cough has sightly reduced. We are not exactly sure if it’s the Afatinib taking effect. I have also found this report for a previous trial on Afatinib and the first case in the report match the exact same HER2 mutation subtype of my mom. Perhaps it’s really helping despite a worse side effects portfolio. This was what our doctor at private sector were suggesting, that if a drug in theory can target a specific mutation, it’s worth having a try if your body can affort. I believe Afatinib may also help your wife.

http://www.academia.edu/29359046/Clinical_activity_of_afatinib_BIBW_2992_in_patients_with_lung_adenocarcinoma_with_mutations_in_the_kinase_domain_of_HER2_neu

October 12, 2017 at 8:32 am  #1293311    

mikelauwy

(continued)

Talking about Gemzar, before we start on afatinib, the oncologists at public sector has suggested Gemzar as their only available option, but they were asking if we decided to continue treatment and it seems they don’t have much confidence that Gemzar can really help. But it’s relieving that for your wife it’s well tolerated and seem to help with the disease (hip pain).

May I thank you for your support again and also I would like to share my thoughts and prayer to your wife and your family as well, hoping the current medication could be effective for both of us.

Best wishes,
Mike

August 9, 2018 at 10:03 am  #1295015    

mikelauwy

Hi all

It’s been some time since I last posted. Would like to share the journey my mom and our family has gone through and have some advice.

My mother has been on afatinib since I last posted in Oct, and it has helped to keep her stable till May, except severe pain at left hip which was lessened by radiation. However, progression was confirmed by our oncologist at PET CT scan in May, and we have switched to use T-DM1, hoping it would work against her exon 20 HER2 disease, and also an extra round of radiotherapy at the back spine. There is also progression in brain with swelling but there was no brain related symptom so whole brain radiation was deferred to see if T-DM1 would help. However, after 2 rounds of T-DM1, our oncologist believed further progression due to increased left leg and hip pain and also worsen X-ray scans, which was then further confirmed by another PET-CT scan. We were put off treatment and sent back to public clinic oncologist.

At this stage, my mom now has great difficulty standing or walking due to tiredness and great pain at hip and leg. She is taking oral morphine syrup 4 times a day but it is only mildly helping with the pain. She also suffers from short term memory loss (e.g. difficulty in recalling what she has done earlier the same day). Her upper body and arms are still functioning well despite great tiredness. At public clinic, the oncologist only arranged whole brain radiation for her which would start next week, but is reluctant to arrange radiotherapy at hip and spine again due to the fact that she had it before already. For chemotherapy wise, they have suggested gemzar but believed it would only have a 10 to 20 percent chance of helping and afraid it would make her even more ill and thus suggesting us not to continue disease control treatment considering the risk against benefit, despite saying that her blood metrics fit for gemzar usage.

August 9, 2018 at 10:22 am  #1295016    

mikelauwy

(Continued)

At this point, what affect her most (both physically and mentally) is the pain at left hip and leg. We would very much like to seek ways for pain control and quality of life improvement even if life prolonging is not possible.

Some questions in my mind which I hope to get some advice or experience sharing

1. May I know are there better means of pain relief that can be administered at home, if radiotherapy or chemotherapy is no longer fit. My mom would very much like to stay at home and was reluctant for any overnight stay/treatment in hospital.

2. Is the whole brain radiation worthwhile at this stage as her only brain related symptom is tiredness and short term memory loss. It is energy consuming for her daily travel to hospital for the radiation as they plan to do it in a 15 times course.

3. For hip area that had radiation before, is it no longer useful to have another radiation to help her lessen the pain. The first radiation did help her a lot so we are not sure if it is a no go this time.

4. Is it no longer worthwhile to have any chemo treatment? From the PET CT scan matrix her disease is similarly worse around the lung like Oct last year before afatinib treatment. But her hip and spine has worsen in scans and she is greatly weakened due to difficulty controlling the lower body (mostly due to the pain). I believe pain control is the first priority but it can be (at least partially) handled, shell we seek chemo treatment again?

Thanks again for all your precious input.

Best Regards
Mike

August 9, 2018 at 11:47 am  #1295017    
JimC Forum Moderator
JimC Forum Moderator

Hi Mike,

I’m sorry to hear of your mom’s progression and especially the pain she’s having from her hip and spine. Since that appears to be her most pressing problem, my first question would be whether it is clear that what is seen on the scan is cancer progression or damage to the bones caused by the disease. In that regard, perhaps a consultation with an orthopedic surgeon would be helpful, just in case there is a procedure that could mitigate her pain.

If not, the problem with repeat radiation to the same area is that there can be additional damage to healthy tissue which had already been damaged by the initial radiation treatment. Repeating the radiation could make the pain even worse. But the question of the feasibility of radiotherapy is a case-by-case decision for a good radiation oncologist.

Although radiation is usually favored as a means to relieve bone pain quickly, chemotherapy might be effective in killing cancer cells in those bones, which could lead to pain relief. Given your mom’s current fatigue level, her oncologist would need to evaluate whether she is strong enough to tolerate the therapy. As far as the percentages quoted by the doctor, that’s tough to quantify in a patient who has had several previous lines of treatment.

Regardless of whether any of the preceding options are chosen, a consultation with a doctor who specializes in pain control would be a good idea. Such doctors have many tools to help control a patient’s pain, and though they may be referred to as “palliative care” doctors, such experts can help even when a patient is still actively treating their cancer.

Good luck in helping bring comfort to your mom.

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 9, 2018 at 11:54 am  #1295018    

scohn

Hi Mike.

I’m so sorry to hear of your Mom’s progression, and hope she can get some good pain relief.

I also want to give you a brief update on my wife’s treatment for her HER2. She was on Gemzar until 3 weeks ago. It worked great for her, as it was reducing, and then holding stable, all of her lesions for about 11 months. Her hip pain went away after 2 weeks on the Gemzar (the lesion is still there, but smaller/stable), and the pain has not returned. However, we are now entering a trial for a new drug – a inhibitor directly designed to target HER2 (and Exon20 EGFR). The trial oncologist we spoke to about it this last week seemed extremely positive about it, and my wife should start on this drug next week.

You may indeed want to look into this trial (TAK-788 is the name of the drug). The oncologist said they have all the EGFR patients they need, but they are actively recruiting HER2 patients, and are interested in HER2 patients both with and without brain lesions. I don’t know what state you are in, but the information on the clinical trial and some of its locations are here:

https://clinicaltrials.gov/ct2/show/NCT02716116

I know there are more locations as well, as it is being offered here in Chicago, which is not on the list.

I also want to suggest you contact a new group, known as the Exon20 Group, recently put together as a group of oncologists, pharmacologists, patients, and patient advocates, specifically to help patients with dealing with their Exon20 mutations (EGFR or HER2). They seem really knowledgable and helpful. You can find their information here:

http://www.exon20group.org

and if you click on the contact link, there are email and phone numbers you can call-they got back to me right away and seem extremely helpful.

As for your questions on radiation, it might be helpful to discuss it with a radiation oncologist to get a better sense of the range of options and outcomes.

All the best to you and your Mom – and virtual hugs to you all!


Wife, lifelong non-smoker, dx 4/24/15 adeno NSCLC stage IV-2 bone mets, 1 lymph node. HER2 Exon 20 mutation. 6x Carbo/Alimta – >50% reduction in primary tumor, lymph nodes, & bone. Alimta maint. not effective -growth & new liver mets. 11/15 – Opdivo; Not effective-add’l growth. 4/16 – PF-7020- large reduction of tumor and mets. 11/16-mixed results, liver mets stable. 2/17-All Stable. 8/17- Add’l growth-off Pfizer trial, 9/17 Gemzar- reduction then stable. 8/18 – Mixed results – new treatment?

August 9, 2018 at 12:02 pm  #1295019    
JimC Forum Moderator
JimC Forum Moderator

Hi Mike,

It looks like I skipped over your question about whole brain radiation. On one side of the issue, your mom is already experiencing fatigue, and WBR often causes increased fatigue (and possibly cognitive issues), which can sometimes be very significant and at times can linger for quite a while. Of course, the other consideration is that the effects of progressing brain mets can be very debilitating, much more so than the increased fatigue and other side effects WBR can cause.

So if it seems that the current symptoms of the brain mets are manageable, holding off on WBR is a possibility but you would want to keep a very close eye on her symptoms and perhaps schedule repeat brain MRIs so that WBR can be started if the situation changes significantly.

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 9, 2018 at 12:14 pm  #1295020    
JimC Forum Moderator
JimC Forum Moderator

One more comment on the brain mets. Often, the symptoms caused by such metastases result from the accompanying swelling around those lesions. The use of oral steroids (typically Decadron, generic name dexamethasone) can significantly reduce such swelling and the associated symptoms.

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 9, 2018 at 8:06 pm  #1295021    

onthemark

Mike,

Just to add that maybe a pain management doctor can prescribe dilaudid (hydromorphone) and/or a fentanyl patch along with taking over the counter medications like tylenol. I hope your Mom finds relief from her pain.


10/2015 Chest xray found a nodule as part of a physical (no symptoms).
01/2016 Upper left lobe lingula preserving lobectomy stage 2b for 1.9 cm invasive adenocarcinoma with additional 2 mm AIS nodule found in pathology.
03-05/2016 Sixteen weeks of adjuvant cisplatin/vinorelbine.
07/2016 Durvalumab adjuvant clinical trial discontinued after 1st dose knocked out thyroid.
12/2016 Revised to stage 1b (due to VPI) after new guidelines for multifocal lepidic lung cancer.
07/2019 Next scan.

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