Lung Cancer IV, brain metastasis

Portal Forums Lung/Thoracic Cancer NSCLC Stage IV NSCLC Lung Cancer IV, brain metastasis

This topic contains 19 replies, has 6 voices, and was last updated by  hopeandfaith 1 month, 3 weeks ago.

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May 2, 2017 at 4:59 am  #1290675    

jc587

Dear all,

First and foremost, if I left something out, I apologize for not being able to read the “Q&A, ask us questions – read first” topic before posting, the link is not functioning correctly. Many thanks to you all for initiating a platform where specific questions related to personal cancer diseases may be shared and discussed, this has been helpful in a world filled with a plethora of information.

My story:

My mother, 61 yo non-smoker, /w weakened thyroid – supplementing /w Levothyroxin for abt 15 yrs now (first 50 MCG, past 3-4 years ago upped to 75MCG) has been diagnosed with Stage IV Lung Cancer also with brain mets. We discovered she had all this with only a symptom of a bad cough and difficulty of breathing when slightly active (a doctor proclaimed she had allergies and prescribed allergy medicine). We went for second opinion a few months later as her symptoms were not improving.

She had massive pleural effusion along with pericardial effusion that required thoracentesis to be performed along with pericardial surgery (also a window was made in the heart sac). Brain MRI shown multiple tumors (around 15-20, most of which around 3-6mm with the largest being 11-12mm) and pathology tests & lung imprint shown malignancy. Bone CT shown suspicious segmental hot areas at right anterior 5th and left posterior 5th ribs.

My mother has recovered from her surgery and has been on Erlotinib (150mg) since April 19th. She is positive for the deletion exon 21 gene mutation.

If my mom’s quality of life is deemed good at the moment and she just started taking Tarceva (which may assist /w the brain mets), is there benefit for adjuvant treatment (WBRT) for her brain metastasis? We are receiving a “yes” from specialists but I feel the more I research on the topic, the more there is an “immediate benefit vs delayed deterioration of quality of life debate.” What are your thoughts and are there other treatment recommendations for mult brain mets?

Thank you for yo

May 2, 2017 at 7:42 am  #1290676    
JimC Forum Moderator
JimC Forum Moderator

Hi jc587,

Welcome to GRACE. I’m sorry to hear of your mom’s diagnosis. I’m glad that she’s doing well after addressing the effusion issues, as they can have such an impact on daily life.

It’s true that Tarceva can cross the blood brain barrier and have some effect on brain metastases; most systemic therapy does cross the barrier to one extent or another. The problem is that the concentration of the drug which reaches those brain mets is often not sufficient to be effective. In fact, it is common for EGFR-positive lung canceer to first show progression in the brain, which becomes a “sanctuary site” for the cancer cells. As a result, the standard treatment for multiple brain mets is whole brain radiation.

It is true that WBRT can have side effects, some of which are more likely to appear over time. The problem with the “‚Äúimmediate benefit vs delayed deterioration of quality of life” debate is that in many discussions the issue of significant neurological symptoms (and consequent reduction in quality of life) caused by progressing brain mets is not given sufficient consideration.

If the decision is made to forego or delay WBRT, it would be good to closely monitor symptoms and have fairly short interval follow-up scan.

I hope Tarceva is effective for your mom for a very long time.

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

May 2, 2017 at 5:27 pm  #1290681    

jc587

Dear JimC,

Thank you for the quick response. I understand your angle; the topic of overlooked developing brain mets could be influencing the patients neuro function and QOL.. just as the side effects of WBRT could. Definitely a fair point.

1) Please describe your definition of “short interval” for the follow-up scan. We are considering getting a followup Brain MRI after 1 month of taking Tarceva. Would this fit into your description? The doctor’s follow-up PET scan is set for 7/04, roughly 10 weeks after taking Tarceva.

2) May you describe some of the symptoms we should be looking out for while monitoring her brain mets if WBRT is held off for the moment? As for the side effects she is experiencing from Tarceva, at the moment; light breakout on her face, sensitive palate (develop sores more easily), dry skin.

3) What are your thoughts on my mother’s situation, specifically timing of Tarceva and WBRT? It has only been about 2 weeks since the introduction of Tarceva for my mother. Should we consider parallel treatment at this stage when my mother’s quality of life is still good and only just starting Tarceva? (could that in turn be more harmful than beneficial) Or should we aim to try to monitor the initial effects of Tarceva before administering adjuvant care?

The radiologist has told my mother she may utilize WBRT anytime, which I think is a bit of a blanket statement not fully taking into consideration every aspect of her particular case. While our main doctor has stated to first introduce tarceva while monitoring, though he did not mention or setup anything regarding when to perform the next Brain MRI. We had to repeatedly ask about adjuvant care before he referred us to the hospitals radiologist.

Many Thanks

May 2, 2017 at 6:29 pm  #1290682    
JimC Forum Moderator
JimC Forum Moderator

Hi jc587,

I think one month certainly qualifies as a short interval, but I also think that the absence of neurological symptoms might be considered as a factor in lengthening that interval. Typical symptoms of brain metastases include headaches, double vision, balance issues, focal weakness (to a specific body part rather than overall weakness), swallowing difficulty, incontinence/bowel issues.

As far as the timing of Tarceva and WBRT, at times there is a choice to be made between treating brain metastases and treating the disease elsewhere in the body. Most systemic treatments are not effective enough against progressing brain mets, and the growth/swelling of metastases in the brain, where space is limited and damage from lesions can be significant, often makes treatment of those brain mets a priority. On the other hand, if the brain mets are small and asymptomatic but disease elsewhere is significant and progressing rapidly, then systemic therapy may be favored. You haven’t described the extent of your mom’s cancer aside from the effusions, but it may be that her doctors would like to get the disease outside the central nervous system under control before tackling the brain mets.

A necessity of choosing between systemic therapy and WBRT is based on the problem of systemic therapy acting as a radiosensitizer, effectively increasing the radiation dosage. That’s good for killing cancer cells, but it makes it harder to determine the effective radiation dosage, resulting in more damage to healthy cells and more side effects. As a result, systemic therapy is often held during radiation therapy, although there are exceptions made.

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

May 2, 2017 at 8:06 pm  #1290683    

jc587

Dear JimC,

Thanks again for the prompt and thorough response.

Apologies, I should have been more specific on her symptoms thus far. As far as we know, we are not sure of the progression of disease, as everything has happened so fast in the past month. My mother had the mentioned surgery on 4/03 and was discharged from hospital on 4/19 (after all imaging and tests were performed). After discharge, a follow-up with the Dr and chest PA on 4/25 showed significant improvement of the pleural effusion, hoping that that is controlled.

Besides that, there have not been many other symptoms for my mother; she started to develop a regular cough during her last few days in the hospital that seemed to worsen, but after discharge, her coughing is almost gone. We completely changed her nutrition and implemented daily deep breathing exercises (could also be the combo with Tarceva working – but not sure if 2-3 days of Tarceva could have helped the cough that quickly). She sleeps around 7 hours a day (few occasions when she is more active, she will have a short nap in the afternoon), fatigue is not yet an issue, and she does not have any drastic changes to her life quality. She has experienced mild skin acne on her face and a more sensitive palate, with better bowel movements (prior tarceva her bowel movements would be very sporadic and few, usually resorting to some sort of laxative for aid). However, the consistent bowel movements could also be due to the increase of the amount of fluids (water and green tea) she drinks and natural vegetables/fruits she has been consuming. No diarrhea like form has surfaced yet, reaching the two week anniversary of Tarceva.

That is partially the reason we are at a crossroads with administering adjuvant WBRT at this moment, hoping to be as well informed as possible. We do not want to regret any influential life-changing decisions we take (knowingly easier said and hoped for than done).

Many Thanks

May 3, 2017 at 4:27 am  #1290684    

cards7up

Being a LC patient myself, IMHO I’d get the brain mets treated. Many onc now give Namenda to help with cognitive issues that may arise due to side effects. With that many mets already, they’ll probably just keep progressing and taking up room in her brain. Untreated can affect her quality of life for the long term just as much as being treated. I’d take my chances with the WBR. She’s not that old and she can live many years with LC these days. Wishing her all the best.
Take care, Judy


Stage IIIA adeno, dx 7/2010. SRS then chemo carbo/alimta 4x. NED as of 10/2011.
Local recurrence, surgery to remove LRL 8/29/13. 5.2cm involved pleura. Chemo carbo/alimta x3. NED

May 3, 2017 at 3:35 pm  #1290685    
JimC Forum Moderator
JimC Forum Moderator

Just one point to add regarding the effect of Tarceva. Although a small percentage of patients can show dramatic improvement after just a few days or a week, it usually takes a bit longer to see efficacy. On the other hand, relief from symptoms such as cough and shortness of breath often show rapid improvement after thoracentesis and pericardial window procedures due to the lessened pressure when the fluid is drained.

The symptoms/side effects you describe do not appear to be neurological in nature, so at this point the brain metastases appear to be small enough to be asymptomatic. I wish we could point you to a decision that is clearly correct, but not only can GRACE not provide actual advice, I don’t know that it could be said that either of the proposed treatment plans is unequivocally correct.

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

May 3, 2017 at 7:34 pm  #1290686    

jc587

Thank you Judy for your personal recommendation, experience, and well wishes.

Thank you JimC for your continued advice and followup responses.
– Point well taken, the decrease in coughing was most probably due to a delayed effect of the thoracentesis/surgery in slight combination with the administered Tarceva.

My apologies on not previously describing my mothers symptoms more concisely. Here are the main points:
Stage IV adenocarcinoma, Exon 21 Mutation: c.2573T>G. p.L858R
Pleural Effusion Cytology, Positive for Malignant cells; Carcinoma, Metastatic
Lung Imprint, Positive for malignant cells; Adenocarcinoma
Whole Body Bone CT, suspicious segmental hot areas at right anterior 5th and left posterior 5th ribs.
MRI WITH/WITHOUT–Brain, numerous enhancing nodules (around 20), distributed throughout both hemispheres, in bilateral cerebrum and cerebullum. The largest measured 12mm in left occipital lobe with rim enhancement, most lesions are between 3 mm and 6 mm.

Additional Questions:
1) What are your thoughts on HA-WBRT, and is this treatment available now? I’ve read up that Dr Loiselle posted regarding potential improvements to wbrt as well on Feb 24, 2012. The specific RTOG 0933 trial has been terminated as of 12/15/2016, wondering if those results are posted and can be found on the web?
– the trial does look promising on HA-WBRT, although more info seems necessary

2) In parallel, the hospital we are at is currently now performing the same Phase II trial (compared to RTOG 0933). We have been notified of a blind randomized clinical trial, comparing WBRT to HA-WBRT. However, it is a blind trial (50/50), and has restrictions that require us to stop Tarceva during the trialing. My initial response is not very fond of this particular trial for my mother, with its implications and restrictions. What are thoughts?

May 3, 2017 at 7:47 pm  #1290687    

jc587

Additional questions continued (reached the limit last post):

3) As for monitoring brain mets, is the best method utilizing brain MRI? How often are patients allowed/recommended to receive brain MRIs with a symptom that requires monitoring such as mult brain mets? What would you recommend as a monitoring protocol to consider?

Our Dr only prescribed Tarceva, without much consideration to radiotherapy for the brain mets at the moment. One point of concern is he only arranged a CT scan for my mother on 7/04, which is about 10 weeks after taking Tarceva – no mention on brain MRI. Nor did he set up a meeting with the radiologist (until we kept on asking about adjuvant local therapy) or additional brain MRI.

We have a blood test scheduled for 5/08, with followup on 5/09 with him. Namely, for him to prescribe more Tarceva (we paid out of pocket for the supply we are taking now – while we wait 2 weeks for insurance submission) where we would like to ask more specified questions.

4) Working in tandem, may you help us generate some questions that would be of high importance/interest to ask him?

Heres a few interesting articles to share:

http://www.lungcancerjournal.info/article/S0169-5002(08)00667-3/fulltext

http://jamanetwork.com/journals/jamao

http://ascopubs.org/doi/full/10.1200/jco.2014.58.4367

Many thanks again everyone.. your time is of invaluable appreciation.

May 4, 2017 at 9:19 am  #1290688    
JimC Forum Moderator
JimC Forum Moderator

The early results on HA-WBRT do look promising, but as far as I can see it’s only available in the trial setting, and the full results of RTOG 0933 have not yet been posted, according to clinicaltrials.gov – https://clinicaltrials.gov/ct2/show/NCT01227954?term=RTOG+0933&rank=1 The best information I’ve seen on that trial regimen is here: https://www.rtog.org/News/tabid/72/articleType/ArticleView/articleId/73/Avoidance-of-the-Hippocampus-Is-Shown-to-Preserve-Memory.aspx

With regard to the local trial you mention, it is at all not unusual for the trial to be a blind, randomized trial, especially when one of the arms utilizes a proven therapy, in this case traditional WBRT. Nor is it uncommon to hold systemic treatment such as Tarceva during the radiation, which is done to prevent clouding of the results due to varying degrees of radiosensitation.

Brain MRI is the preferred method for monitoring brain mets. New or worsening neurological symptoms may result in moving up the next scheduled MRI to check for progression. The GRACE faculty and moderators can’t make specific recommendations regarding treatment or monitoring options; your mom’s medical team would best be equipped to do so, having access to all of her medical information and clinical examinations.

I would probably make it a point to ask about a follow-up MRI for the brain mets, the possibility of WBRT and a consult with the radiation oncologist (the doctor who performs radiation procedures). I would leave specific questions about WBRT to the rad onc. You may also want to consider the possibility of getting a second opinion. Not only is that good in general, but when you are facing a major decision (WBRT now or later), it can be invaluable.

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

May 9, 2017 at 12:59 pm  #1290715    

bmj85

Hi, new user bmj85 here. My 31-year-old son was diagnosed 4/13/17 with adenocarcinoma, stage iv. Tested positive for EGFR mutation Exon 19 and started Tarceva 150mg/day on 4/25. Moderate rash on face area and rather dramatic response / improvement in pulmonary function since then.

April 13 2017 Diagnosed Stage 4 Adeonocarcinoma lipoidal pattern
April 15 2017 Pericardial window procedure for pericardial fluid
April 25 2017 Started Tarceva after testing positive for EGFR mutation Exon 19
April 28 2017 MRI reveals 20+ brain metastases (BrMs) ranging from barely discernable to 7mm. Asymptomatic thus far with no swelling edema seen on MRI.
May 28/May 1 Consultation with several Radiation Oncologists led to recommendation of “standard treatment protocol of WBRT. Some difference in approach – 2 weeks total of 30 Gu vs 3 weeks total of 37.5 Gu plus Metamantine. Elected to pause WBRT for four weeks to see if Erlotinib can produce response in BrMs. Radiation Oncologists generally supportive of this while Medical Oncologists a bit more nervous.

My local medical providers have very little to no experience in this area. Trying to find out if anyone has experience with centers of excellence such as Duke, Vanderbilt, MD Anderson, etc. who would have better insights into balancing TKIs and possibly immunotherapy (my son tested positive for PDL1 expression as well) with WBRT timing.

This paper from last month was very insightful: https://www.ncbi.nlm.nih.gov/pubmed/28391420

May 10, 2017 at 9:11 am  #1290721    
catdander forum moderator
catdander forum moderator

Hi bmj85,

Welcome to Grace. I’m so sorry to know about your son’s diagnosis. It sounds as if you’ve found the general understanding and approach to multiple brain mets w/EGFR mutation. The idea of pulse dosing, giving around 3 or 4 days worth of tarceva (or other TKI) in one dose every 3 or 4 days. The overall amount is the same but it’s given in one heavy dose instead of the 3 or 4 normal doses. Many oncologists are finding this regimen helpful for cancer that is in the Cerebrospinal fluid (CSF) known as Leptomeningeal disease though I’m not aware of pulse dosing for brain mets.

A point of timing is also crucial. While your son isn’t experiencing symptoms of the brain mets is a good time to let the tarceva have a chance to penetrate the so called blood brain barrier. After symptoms begin aggressive treatment, wbr is the go to treatment for symptom relief.

A 2nd opinion at a large teaching facility such as the ones you mentioned will have information on the most recent thought in this area. There are even some who mat provide telemedicine appointments. If your son lives far from a lung cancer specialist it’s common practice to see a specialist at transition times (or with questions like yours) then treated by a local oncologist. Kind of a teaming up of resources.

I hope your son does well. Please keep us posted and don’t hesitate to ask if you have more questions.
All best,
Janine

May 10, 2017 at 5:36 pm  #1290725    

bmj85

Janine: Thanks for the kind and helpful words. I’m so new to all of this and constantly feel behind the curve, with the stakes so high, this can be overwhelming.

I found this article today on pulsative erlotinib for both lepto and BrMets: https://www.ncbi.nlm.nih.gov/pubmed/28245967 I ended up paying $36 to read the whole article. Was there a better way to get to it?

You speak of a pulse dose / dense dose (are they the same thing) as if its ~ common knowledge, yet here in Knoxville TN I don’t think its in their experience set. I’d like to reach out to the folks leading the charge in this area but still a newbie in figuring who that is and how to contact them. e.g. I called the office of one of the authors of this paper today and left a message with her nurse. If they work that way, would that be a possible use of a telemedicine approach? Would I ever expect my oncologist in Knoxville to contact the author and gain helpful insights?

Can you clarify your comment about timing? i.e. his brain mets are asymptomatic at present. Are you concurring with the strategy to see if Tarceva can get a response before resorting to WBRT? And reserve WBRT when you need to address symptoms of the BrMets?

Sorry I’ve I’m overflowing with questions.

May 10, 2017 at 7:17 pm  #1290727    
JimC Forum Moderator
JimC Forum Moderator

Hi bmj85,

First, let me say that despite your doubts to the contrary, I think you’re doing a terrific job of researching and making sense of all the information you’ve found.

What Janine was saying is that if the brain mets were symptomatic and/or clearly growing, you wouldn’t want to delay the best-proven therapy, WBRT. Under the current circumstances, time is not as critical, so you may be able to afford to give erlotinib some time to treat those brain mets.

Other than subscribing to a range of medical journals, I don’t know of any better (i.e., less expensive) ways to access these journal articles. During my wife’s illness, I worked at a university with a medical school, so my internet access allowed me to view the full contents of such journals. I don’t know if going to the library at such a university and using their net connection would give you the same access, but it might be worth a try.

Some oncologists regularly consult with colleagues at other institutions, so it’s possible your mother’s doctor will do so; it can’t hurt to ask. Otherwise, I second Janine’s suggestion of a second opinion at a major teaching hospital.

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

June 3, 2017 at 4:07 pm  #1290810    

hopeandfaith

I realize that this is a rather late response to the conversation which originated on 5/2/17, but I’d to like share my father’s experience in hopes that this may be useful to others who are contemplating WBRT.
At the age of 77 in 2015, he was diagnosed with stage 4 EGFR+ exon 19 deletion NSCLC adenocarcinoma with liver, bone, and brain metastases. He had > 20 brain lesions ranging from few mm up to 10 mm in size, but he was asymptomatic from them. His first oncologist recommended WBRT, which my father was reluctant to do because of concerns about late cognitive effects after radiation, especially in older patients. We requested a second opinion from a lung cancer specialist at a major teaching hospital. Decision was made to defer WBRT in favor of Tarceva. A short-interval brain MRI of 4 weeks was done, and there was a dramatic response after just 4 weeks of Tarceva. All lesions had decreased in size and enhancement, and some were no longer visible on MRI. My father subsequently had consultations with both a neuro-oncologist (who is the author of the aforementioned paper https://www.ncbi.nlm.nih.gov/pubmed/28391420) as well as a neurosurgeon, and all seem to be in agreement that WBRT would be the last resort, at least in my father’s case. There are probably many factors that affect the decision to proceed with WBRT, but I wanted to share my father’s story since he had a positive response to TKIs without the need for brain radiation.

To Judy, bmj85’s son, and jc587’s mother, I wish all of you the best, and hope that there is a very good response to treatment for a long time.

Hope

June 3, 2017 at 5:04 pm  #1290811    

jc587

Dear Hope,

Thank you taking the time to share your father’s story. Your father receiving a good response from Tarceva is great news, especially for patients in similar situations (like my mother).

Our Dr scheduled us for a whole body CT including brain, as the first followup image from taking Tarceva. My mother had her first brain MRI performed on 4/15, started taking Tarceva on 4/19, and is waiting to do the follow-up whole body&brain CT for follow-up on 7/04.

We asked our DR repeatedly about time in-between scans and if we should get another brain MRI, however, our DR did not recommend an additional brain MRI in-between the first MRI and CT set for 7/04.

My mother is still asymptomatic and has been on Tarceva for 46 days. Her side effects from Tarceva has been mild acne/rash on her face and some red spots on her body. A dermatologist prescribed Allegra 60mg (which my mother takes only once per day) and Elomet ointment. This has really helped her facial acne/rash symptoms.

We chose to not have WBRT performed yet, and decided to not participate in the Clinical trial performed at our hospital (phase II blind randomized clinical trial, comparing WBRT to HA-WBRT). We are waiting for the first image report (7/04) for monitoring her symptoms/tarcevas effect.

If you do not mind me asking, how is your father doing now? Is he still on Tarceva and what has happened since then? I hope he is still asymptomatic and doing well.

Best wishes

Jc

June 4, 2017 at 6:34 pm  #1290812    

bmj85

Response to Hope and JC from BMJ85:

Thanks for the insights! My son received a followup MRI after 4 weeks on Tarceva – standard 150mg/day dosage – having postponed the “standard” treatment of WBRT recommended for his 20+ BMets ranging from barely perceptible to 7mm. Wonderful news! All of the BMets are gone with the exception of the formerly 7mm one, which is now reduced by 75%. Wow, you can imagine how thankful we were not to immediately have gone the WBRT route, despite that being the initial suggestion of his general oncologist and two of the radiation oncologists we met with.

I did exchange brief emails with the two authors of the paper you mentioned, Hope, and informed them of the outcome of the “wait and watch” approach, which seemed especially desirable for a 31-year-old. I gathered from your post that you met with them / her at Stanford? Not sure how far that is from your home and if/how you plan to integrate care going forward with perhaps a local general oncologist and one or more specialists at a different institution more distant. Still trying to figure out how to fashion a “team” with my son’s physicians.

Not that I want to borrow worries from tomorrow, but was there a discussion of what else to consider should the beneficial effect of the Tarceva on the BMets before re-considering WBRT? For example, my son met with an oncologist in Nashville recently who indicated that he might consider adding Avastin to the Tarceva or seing if he could get Tagrisso approved for him (with or without T790 mutation evident) as that appears to cross the blood/brain barrier more readily.

Finally, JC curious about the use of Allegra and the Elomet cream – my son has a fair amount of the rash on his face and neck and is growing a handsome beard which covers quite a bit. I hadn’t heard about the allegra / Elomet – is that considered a common approach? say vs Doxycyline such as is often given to acne patients?

Thanks for the encouragement!

BMJ85 in T

June 4, 2017 at 7:54 pm  #1290813    

jc587

Dear BMJ85:

That’s great news! Happy to hear that Tarceva has helped the Bmets.

Please keep me updated on the aggressive approach it seems some doctors you have seen are taking for the Bmets. What I have researched and understand is that most specialists prefer to recommend to lengthen out each systematic treatment as long as possible (if patient symptoms/side effects allow, even light progression). For my mother specifically, it would mean that if her Bmets are not responding to Tarceva, but the primary lung tumor and rest of her body have good response to Tarceva, a local treatment option for the Bmets may be explored in combination with Tarceva as opposed to testing for T790M and switching systematic care while Tarceva has been working relatively well for everything but the Bmets. I believe, please correct me if i’m wrong, there has not been much clinical study/evidence on switching Erlotinib treatment to Osimertinib, while erlotinib is still eliciting a good overall response just to treat Bmets. Not sure how this would effect the overall duration of PFS, as erlotinib may not be fully exhausted.

It seems that we are walking a road with limited options, and we need to value each and every option we have for as long as we are able to. However, I am very interested to hear about the feedback you are receiving.

As for Allegra and Elomet cream: I am not very knowledgable on the medication compared to a drug such as Doxycyline. From our own personal experience standpoint, my mother started developing facial acne (especially in her T-zone, in-between eyes, nose, around mouth) and a roughening red rash on her cheeks 2 weeks after taking Tarceva. The acne was bearable and nothing highly discomforting, but the inflamed blemishes would pus and our nurse referred us to the dermatologist. After taking the medication and applying the ointment, her skin conditions improved within one week. Rash has disappeared and acne has lessened.

  • This reply was modified 1 month, 3 weeks ago by  jc587.
  • This reply was modified 1 month, 3 weeks ago by  jc587.
June 4, 2017 at 7:56 pm  #1290815    

jc587

Question for BMJ85: For your son’s Brain MRI, how long did you wait between the initial MRI and followup MRI? Was it the 4 week duration while on Tarceva? Was this time in-between recommend by your Doctor to monitor the brain mets? It was interesting that nothing of the sort was offered/recommended for my mother, and our primary doctor even stated we should not perform the MRI too often and to just wait for the CT to be done early July. That would be 2.5 months after the initial MRI that first shown the Bmets.

Wishing you the very best!

Jc

June 5, 2017 at 12:58 am  #1290816    

hopeandfaith

Dear JC and BMJ85,

Glad to hear that your loved ones are doing well on Tarceva.
BMJ85: That’s wonderful news that your son’s brain metastases have responded so well to Tarceva!

JC:
It sounds like your has mother has a PET-CT scan scheduled as part of the follow up?
The type of imaging may vary by institution, but my father’s specialists prefer to use MRI to monitor the brain mets.

My father responded to Tarceva for 9 months. At one point, 1 or 2 of the brain lesions increased slightly by 1-2 mm (oligoprogression), so there was discussion about possible stereotactic radiosurgery (Cyberknife). However, my father again declined brain radiation and decided to stay the course. After 9 months on Tarceva, he developed disease progression in the liver. Therapy was changed to Tagrisso (osimertinib) after he tested positive for the T790M mutation. Tagrisso has worked well for his systemic disease and brain mets, although he has had to take treatment breaks due to a rare but serious side effect, pneumonitis, which occurs in ~3% of patients receiving Tagrisso, and less often with Tarceva.

BMJ85:
Shortly after my father’s diagnosis, we transferred his care to Stanford. He is fortunate to have an excellent team of physicians managing his treatment. Since you live near Nashville, has your son seen or will he be consulting with Dr. Leora Horn at Vanderbilt? I believe Dr. Horn is one of GRACE’s faculty members.

Avastin or bevacizumab was mentioned as well in my father’s case, but his thoracic oncologist was concerned about the possible risk of hemorrhage, as some of the brain metastases had signs of bleeding at the time of diagnosis. While doing some research recently, I came across this article on Avastin.

http://clincancerres.aacrjournals.org/content/21/8/1896.short.

Regarding the skin issues, my father also developed rash/acne after he started taking Tarceva. The rash improved in 2 weeks after treatment with Doxycycline and hydrocortisone.

Best wishes,
Hope

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