Fighting two cancer battles in one - brain and body - 1264234

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louisb
Fighting two cancer battles in one - brain and body - 1264234

My wife Lynda was diagnosed Sept/13 with stage 4 primary lung , egfr. She had WBRT in Sept. Was on Iressa until Mar/14. Pulsing Tarceva, 1500 MG every 4 days since early March. Has lepto and affecting CNS.

Last week we learnt that brain is stable however progression liver and spine.

One well doc on west coast suggested that she continue Tarceva at same rate but add 900/1000mg Alimta and carboplatin 5 aus every 3 weeks. Thus high dose of alimta to keep fighting brain mets and lepto plus go after cancerous cells in body.

Other well known doc says no. No proof , no evidence, no publication on high dose Alimta, stick to 500 mg , normal dose.

Third well known doctor says he may get her in AZ 9291 trial if she tests positive for T790M.

Lynda is scheduled for carbo/alimta this coming Tuesday. If she commits to this , she may miss AZ opportunity. If instead we go for AZ which we would only find out in 3 weeks if she can get in, we are concerned that she will lose benefit of the pulsed Tarceva that kept her brains mets and lepto in check so far.

What should we do ? Our local onc openly told us he does not know.

He claims Lynda is in uncharted waters primarily by being the first he has to ever pulse 75 Tarceva pills per 30 days! Lynda is a first for him and others.

We need some guidance and are totally unsure of ourselves on what to do. Lynda tolerated Tarceva well. No diaheria, no rash... however fatigue and loss of appetite [ taste buds ] .

All comments , opinions and experience are very very welcome. Lynda is 58, non smoker, always healthy and totally surprised with such a severe prognosis when the only symptom was 6th nerve palsey and in the end caused by brain mets!

Thanks for your website, thanks for your involvement and commitment to helping people in need.

Dr West
Reply To: Fighting two cancer battles in one – brain and body

louisb,

I'm truly sorry that I don't think any of the faculty can offer a suggestion of what to do in a situation in which there isn't any remote hint of evidence to suggest how to proceed, nor is there even any evidence that can even inform the potential suggestions.

As you have almost certainly learned, leptomeningeal carcinomasis is very difficult to treat effectively. We haven't seen any evidence yet about whether AZD9291 or other third generation EGFR TKI therapies have efficacy against leptomeningeal carcinomasis, but I would be very surprised if emerging phase II or III trials permit patients with LMC to enroll. If there is a compassionate use program in the future, there probably won't be any rigid eligibility requirements.

Sorry we can't offer any recommendations of how to proceed in this setting.

Good luck.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

louisb
Reply To: Fighting two cancer battles in one – brain and body

Txs Dr.West.

We understand the challenges and we keep praying that Lynda is an anomaly and will continue to chug along.

The lepto and brain mets are stable and we assume this has to do with high dose pulsing.

Given three choices for a next step which would you suggest

1. standard dose alimta/carbo with pulsed Tarceva
2. high dose alimta with standard carbo with pulsed Tarceva
3. az9291

Apparently Dr.Janne stated at ASCO that there is some evidence that AZ9291 has shown some penetration thru the BBB.

Thank you very much for this site, your time and devotion to treating cancer.

Louis

JimC
Reply To: Fighting two cancer battles in one – brain and body

Hello Louis,

I am very sorry to hear of your wife's situation; it is very similar to that of my late wife, who also had brain mets, lepto and progression in the liver and many bones. We also tried pulsed Tarceva, although this was in 2011 when pulsing was fairly new and the dosage was 600 mg every four days. And we were also faced with the issue of trying to control cancer in the CNS as well as progression in the rest of the body.

The important difference is that pulsed Tarceva seems to be working for your wife. Although as Dr. West has said there is simply not enough evidence to be able to choose a definitive treatment in such a situation, my personal, non-medical opinion would be that I would be extremely hesitant to switch away from a treatment that is currently effective. As Dr. West said, there aren't any established treatments for lepto, only anecdotal evidence of the effectiveness of pulsing Tarceva, at least for some patients. In addition, many drugs are thought to penetrate the BBB to a certain extent, but the evidence is limited and such drugs may not penetrate the BBB in sufficient concentrations to be effective. That's the theory behind pulsing Tarceva - get enough of the drug into the CNS to have efficacy.

Good luck with the treatment plan you choose.

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>

louisb
Reply To: Fighting two cancer battles in one – brain and body

Thank you Jim. I appreciate what you are doing. You certainly loved Liz very much.

Lynda and I are faced with this big decision.

Do we miss an opportunity to get 9291 or alimta/pem over and above continued Tarceva pulsing.

Lynda really does not want to lose her hair a second time. As her caregiver I am running out of ways to have her eat. It seems that IV chemo will further increase her fatigue & decrease appetite.

I appreciate when you say my opinion, non medical etc because that's what I expect from anyones' advice at this point and that includes doctors. Our Onc has been brutefully honest as he recognizes that Lynda is in uncharted waters and he flat out says he does not know!!

What I have learnt thru this ordeal is that there are becoming more divergent treatment strategies that are available and being tried but too many are not written up and shared.

Godspeed to all involved in cancer research and cancer care.

JimC
Reply To: Fighting two cancer battles in one – brain and body

Louis,

Thank you for your kind thoughts. Yes, I did (and continue to) love Liz very much.

I assume that Lynda lost her hair due to WBRT rather than Iressa or Tarceva. Carbo/alimta doesn't tend to cause hair loss, and that was true for Liz, So that may not be a factor.

But you are correct that carbo/alimta will likely add to her fatigue. I understand that since Lynda has not had traditional chemo (including a platinum agent), he is recommending a standard platinum doublet, which would tend to provide the best response (first-line chemo agents are more effective in combination with platinum). But another option would be single-agent alimta, which is often used in (and is FDA-approved for) second-line therapy. Of course you could try the doublet and if the side effects are unmanageable drop the carbo.

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>

Dr West
Reply To: Fighting two cancer battles in one – brain and body

In the absence of both any evidence to shape a decision and a legal restriction against making medical recommendations to people who are not my patient, I am not able to suggest a treatment approach. Like Jim, however, I am very reluctant to disrupt a treatment approach that is producing good results in favor of one with many unknowns. I am especially wary about doing that in the setting of a good result in a situation in which disease control is uncommon to rare.

Good luck.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

louisb
Reply To: Fighting two cancer battles in one – brain and body

Txs to you both.

I agree with the view "why drop Tarceva that seems to be keeping brain mets and lepto in check " However correct me if I am wrong but we were told that carbo/alimta may reduce tumours in only about 30% of patients. Is this true?

JimC
Reply To: Fighting two cancer battles in one – brain and body

Hi Louis,

That's not really true. The percentage you quote is the approximate response rate from clinical trials, often defined as either complete disappearance of the tumor being measured or shrinkage of 50% or more. But more than 30% of patients receive a benefit, as Dr. West has stated:

"When I provide estimates for what patients might expect from first line chemo for advanced NSCLC, I generally say that the response rate for significant tumor shrinkage is in the 30-35% range (40% is a tad on the high side), with another 40-45% demonstrating stable disease or perhaps mild shrinkage. Because the cancer would almost always grow as a default plan, this combined 70-75% “disease control rate” that includes those patients with stable disease or significant tumor shrinkage likely represents the proportion of patients who benefit at least a little, if not a lot, from chemotherapy." - http://cancergrace.org/topic/efficacy-of-carboalimta#post-1263654

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>

Dr West
Reply To: Fighting two cancer battles in one – brain and body

I would also add that even if you go by "response rate" and formally call it 30-35%, if that's the best odds of any of the alternatives, it's the strongest choice.

I'll also add that high dose Alimta (pemetrexed) has been compared to standard dose Alimta and shown to lead to no improvement in efficacy compared with standard dose Alimta, but greater side effects. Because of this work, there has been very little impetus for high dose Alimta in treating lung cancer (or any other cancer thus far).

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

marisa93
Reply To: Fighting two cancer battles in one – brain and body

Just want to send my best wishes for whatever path you choose...

louisb
Reply To: Fighting two cancer battles in one – brain and body

Once again thank you ever so much.

Lynda and we [ 3 sons and daughter ] decided to go the conventional path with carbo/alimta.

That said I have another concern that you may have some insight on.

Lynda is pulsing 1500MG of Tarceva every 4 days. She is tolerating reasonably well. She is on this dose since early March.

My concern is if she should still be at such a high dose of Tarceva while on alimta/carbo? How is toxicity measured or witnessed? I am afraid that though Tarceva is causing fatigue, loss of appetite and nausea adding these other drugs on top of that sounds like a little much to me.

From what our local onc advised [ we live in Montreal ] Lynda is in uncharted waters. In fact months ago he suggested a second WBRT prior to pulsing. We insisted on pulsing based on what we read and learnt. He thereafter investigated I guess and embarked on this treatment.

I am afraid he is not sure if and when Lynda should reduce Tarceva. The position last week was keep it going unless at some point she cannot tolerate. Now carbo/alimta every three weeks, 3 cycles means that during the three week cycle Lynda would have also ingested 50 Tarcevas !

Is that relatively safe? Any conflicts between these potent drugs?

Txs

Louis

louisb
Reply To: Fighting two cancer battles in one – brain and body

Txs Marisa. Sorry about your loss.

Lynda and I , both 58, started dating at 17, married at 23 and raised 4 great kids [ 26 to 33 ]. 4 + 1 grandkid on the way.

This cancer took us completely by surprise as Lynda was a picture of health with no symptoms pointing in any way to lungs or cancer. There are times that life just sucks and this is one.

Jim comes across as a great guy and obviously as you and I and everyone losing a loved one in this way is a life changing experience. Good for you both that such a trauma brought you together.

God bless and enjoy every sunrise and sunset.

Regards,

Louis

marisa93
Reply To: Fighting two cancer battles in one – brain and body

Louis,

I think cancer is THE suckiest point of life!!!! It was the last thing on my mind at my husband's dx. I thought(or at least hoped I guess) his symptoms were caused by something more manageable.

Yes, losing a loved one and especially a spouse, is a definite life changer! I truly thought mine was over until Jim replied to me here on GRACE. He is a very great guy and I feel truly blessed to have connected with him and have him become a part of my life and that of my kids as well. With none of his own, that has also been a life changer for him. Especially with one in her teens :wink:

May you and Lynda enjoy all of your sunrises and sunsets together.

JimC
Reply To: Fighting two cancer battles in one – brain and body

Hi Louis,

I understand your concern about your oncologist and these "uncharted waters". One of the strengths of online forums, especially the faculty-moderated forum here at GRACE, is that information on newer treatment strategies such as pulsed Tarceva can be shared. One result is that sometimes a highly-motivated patient or caregiver (like you) can uncover ideas with which many oncologists have little or no experience.

Though trials document the most common side effects of a particular drug, patients' responses vary quite a bit, so overall toxicity is really just a patient-to-patient matter. If side effects become unmanageable, doses can be reduced or in a multi-drug regimen one or more drugs may be withheld.

Having seen the effects of lepto, and knowing how difficult it can be to find an effective treatment for it, I would repeat my personal reluctance to tamper with it, instead perhaps fine-tuning the carbo/alimta by modifying dosages, lengthening the cycle or dropping the carbo. The nature of the unmanageable symptom(s) may also suggest the remedy - if blood counts drop to unacceptable levels, the problem is most likely the chemo, since Tarceva usually does not affect blood counts. Other problems such as diarrhea or fatigue may be connected to Tarceva and adjusting its dosage might be considered. (One factor to note about Tarceva is that it has a half-life of only 36 hours, so if you're having a problem with it, modifying or delaying it can produce faster results than changing a chemo regimen).

Good luck with carbo/alimta.

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>

laya d.
Reply To: Fighting two cancer battles in one – brain and body

Hi Louis. . .

I just wanted to join the chorus in wishing your wife luck with whatever path you all choose. . .

Laya

Dr West
Reply To: Fighting two cancer battles in one – brain and body

I want to wish you luck but also to reiterate that I don't believe there is any evidence anywhere on the planet to say what to do. Neither I nor any of the other faculty can offer a suggestion when there's just no results available on what to expect. These are just completely uncharted waters, so we're left with just best judgment, and I truly can't say what I would do or favor.

Good luck.
-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

louisb
Reply To: Fighting two cancer battles in one – brain and body

Txs Laya. Reading your profile its obvious your mom had been thru much. Totally gut wrenching for you and her circle of family and friends. Sadly resting in peace at some point seems to be a blessing.

I just want to say that today was Lyndas' first of four carbo/pem chemo treatment. I hope that between the high dose Tarceva and now chemo won't further destroy her quality of life. Though we want quantity of life as well but at some point is life worth living. She is doing okay today. Dexamethasone probably makes her feel better than she really is.

For all of the people touched by cancer ...may your spirit never die.

God bless and care for all.

Dr.West , Jim..txs a bunch.. you helped facilitate the decision we made.

cards7up
Reply To: Fighting two cancer battles in one – brain and body

Louis, I want to join in with the others on wishing your wife the best.
Take care, Judy

Dr West
Reply To: Fighting two cancer battles in one – brain and body

Yes, please let us know how things are going.

Good luck with the addition of the chemo.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

louisb
Reply To: Fighting two cancer battles in one – brain and body

As a rookie caregiver with emotional attachment to the patient I am starting to struggle due to witnessing Lynda wasting due to the lack of desire to eat. Grateful she likes Ensure but how long can a person go on that.

I searched and read past dialogue at Grace. Very helpful especially Dr.Wests' article of Feb16/09. Is there new knowledge, treatment and/or things others have done for to help induce loved ones to eat ?

Txs

JimC
Reply To: Fighting two cancer battles in one – brain and body

Louis,

I posted this in another thread:

Tarceva can cause loss of appetite and so can radiation, especially if it touched part of the GI tract. Whatever the cause, there are a number of ways to try to combat it. Taking your anti-nausea medication on a schedule, rather than waiting for nausea to develop first, can be very effective. Also, eating smaller, snack-size meals is better than larger meals, 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!) Drinking Ensure (or a similar product) can help, as can appetite stimulants such as Megace.

GRACE member Debra (double trouble) had these suggestions:

“I will add to the applause for Ensure. I tried the other brands and they all taste like vitamins. Ensure is the only one I like. They have several flavors, and now there is a Clear Ensure that is like fruit juice. I’ve tried the apple and it’s not bad. Sometimes you just don’t want a shake.

My appetite has been turned on by some meds, off by others, and when it is pretty normal I have that heightened sense of smell/taste too.

I stick to mostly fruits and veggies, some grains like kinoa and bulgar wheat, and I need more protein but I’m a little turned off by meats, beans and eggs. Used to love them all but having trouble digesting them now.

I also find that the most simply prepared foods are the best for me. The more fussy, the less I seem to like it.

Also, you might consider a protein powder in smoothies or juices. It does have a flavor all its own so you probably either like it or you don’t, but I have lived on smoothies at times. My favorite, ginger peach!” – http://cancergrace.org/topic/tarceva-and-appetite#post-1256689

You might also want to check out these posts:

http://cancergrace.org/forums/index.php?topic=11387.0

http://cancergrace.org/forums/index.php?topic=5464.0

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>

Dr West
Reply To: Fighting two cancer battles in one – brain and body

Louis,

Unfortunately, with an advanced cancer, and probably especially with leptomeningeal disease, I don't think there's likely to be a clear answer to her difficulty with eating and weight loss. It is very much part of the whole difficult picture that makes it such an infamously difficult complication.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

louisb
Reply To: Fighting two cancer battles in one – brain and body

Lynda and family had the lousiest week of our lives thus far. Lynda had her first chemo/alimta cycle Tuesday last week. This follows her usual 1500mg Tarceva pulsing day Monday. Wednesday she woke up with two rubber legs . Could not stand. Could not move legs. Paralysis.

We spent 6 nights in hospital. She was taking in some very powerful high dose steroid drip . She was diagnosed with myeolitis or something spelt close to that. Doctors cannot with certitude know the cause.

We are now home and Lynda is alright but very weak and very tired. It was nice seeing her eat very well and had lots of energy while she was on the steroid drip. However without it she dropped like a rock. She is lying on our couch as I write this!

Now we are faced again with major decisions. We are thinking of dropping the chemo drip as it may cause a flare up of this again. The chemo seems so tough on an already weakened body and this due to high dose Tarceva that I am afraid it will do more harm than good.

We may have missed the opportunity to get into AZ trial because of this incident. Not sure. We are certainly running out of options. Lynda is becoming more and more depressed. She really does not want to leave us and we do not want to lose her either.

catdander
Reply To: Fighting two cancer battles in one – brain and body

louisb, I don't want to try to give advice, you didn't ask for any. I just wanted to send my heart out to you, Lynda and the kids. Cancer is such an awful awful disease. I hope she gets some stability back in the next days.

I've kept up with your thread and want to add my husband as an example of drinking ensure. It's probable you already have since I've written so much about it (I should get an endorsement contract). D has always been a very thin person. One of those who didn't bulk out in their twenties but always in excellent shape and good health, a one man cabinet shop keeper. In the past 5 years he never put back on the weight he lost from tumor burden, surgery, tx, et al. Chalk it up to just one of the many ways he's an outlier in the cancer world but he never got his appetite back and still relies on Ensure Plus when he can't eat. One of the lessons I've learned was to not push food on him, it makes him feel bad that he's not able to eat. Dr. West has said that a symptom like cachexia isn't as difficult for the person with it as we caregivers might think. Sometimes fantasy and bs are good medicines. Another part of learning began with this piece, http://cancergrace.org/coping-with-cancer/2009/04/29/denial-coping-mecha...

So there, no advice right? humph sure. :wink:

Janine

Dr West
Reply To: Fighting two cancer battles in one – brain and body

I'm afraid that with the leptomeningeal disease, she's likely to be on a tightrope where even the slightest additional challenge will knock her off. The chemo isn't typically that difficult, but even leptomeningeal carcinomatosis alone can completely disable people.

Good luck.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

louisb
Reply To: Fighting two cancer battles in one – brain and body

txs Janine. Your husband is an inspiration. Unbelievable how many young and middle aged people are being plagued with LC and so many are at stage 3 or 4 out of the gate. Why this cancer group is growing and affecting so many non smokers is incredulous.

Regarding the recent experience with myeolitis [ inflamed spinal cord ] would this have been caused by Lepto, Chemo , Cancer or simply bad luck?

JimC
Reply To: Fighting two cancer battles in one – brain and body

Louis,

Leptomeningeal carcinomatosis is also known as carcinomatous meningitis. Meningitis is an inflammation of the meninges, which include the tissue of the spinal cord. In the case of LMC, it is the cancer which causes that inflammation, rather than an infection. I would think that LMC is the likely cause of her symptoms and spinal cord inflammation.

I certainly understand how you are both feeling, and the dilemma you face about whether to continue treatment.. My wife did not want to discontinue her treatment, and though I knew we had reached the point at which it was extremely unlikely to help, we did continue for a time beyond that point. When it became clear that it was only making a bad situation worse, we had a frank conversation with her oncologist and shifted our focus to doing everything we could to make her as comfortable as possible. Though at first she was angry and depressed, she quickly accepted the decision and seemed relieved to know that she would not be faced with the awful symptoms of LMC for an extended period of time. I can't say whether that time has come for you and Lynda but I hope that when it does the two of you can find a way to accept it peacefully.

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>

Dr West
Reply To: Fighting two cancer battles in one – brain and body

I suspect her issues are most likely attributed to the cancer within her nervous system (LMC), but her doctors would have a better chance of addressing this question.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

bobradinsky
Reply To: Fighting two cancer battles in one – brain and body

Dear Louisb

I want to join the chorus of others on Grace to wish you and Lynda my hopes and prayers in her battle with LMC. 1500 MG pulse doses is the highest I have heard anywhere yet. My wife, Beth, pulse dosed 900MG and that was considered very high just last year. I fear the paralysis in her legs is from the LMC. That was the first serious symptom Beth experienced once she was diagnosed. Don't be surprised if incontinence follows. I think you are right inj staying with the current program. Beth was also taking Alimta. along with the Tarceva. You two are in a horrible situation, I don't know how else to say it. LMC really sucks and it is unrelenting. I do believe the high doses of Tarceva have kept her going this long and her progress may be studied by other docs and patients. I also hope the insurance industry follows her case too because here in the states 30 tablets a month (4500 MG) is all they will approve.

Please get yourself some help and do not let her try to get out of bed alone no matter how good she feels. I also suggest you get a portable commode and keep it in her room. I would also recommend that you start looking into hospice so you can make an informed decision at the right time. I sure don't want to sound like the Grinch who stole Christmas, and I pray for both of you that she is as fortunate as Valerie Harper, but your last post has got me concerned.

I have not been as regular on Grace since I went back to work last month, but I promise to be here for you if you have any questions about symptoms. God bless you and Lynda.

louisb
Reply To: Fighting two cancer battles in one – brain and body

Thank you Bob, Jim and Dr.West and everyone involved in this site.

I am on the fence again regarding switching to AZ9291 if they let her in following this myeolitis issue. We have several oncs suggesting the switch 9291 and others suggesting not.

The choices are simple though making a decision is hard.

1. Let destiny take its course.
2. Stay on pulsed Tarceva only though liver showed progression on last scan
3. continue Tarceva with Carbo/Alimta though based on first cycle it seems to me it will accelerate her deterioration as it was harsh
4. switch to daily AZ9291 if allowed

We are on the fence again and hope to meet with AZ trial staff next week in another hospital that is just starting to recruit and learn more on what they think. I understand contrary to Clovis, lepto is not an exclusion though they search for stability and I assume a patient strong enough to endure the demands of a trial.

We met a young lady the other day, 32 years old, 3 young children..same situation as Lynda. Non smoker, healthy , dx out of the gate with stage 4 , endured whole brain, iressa, finished 3 cycles of carbo/alimta... totally heartbreaking. Lepto was detected as well.

At some point can someone eventually answer why this epidemic of lung cancer amongst women. What is to be suggested to people as a yearly check up to pick up this deadly cancer earlier on..how about catching at stage 1 or 2 and not 3 or 4!

May we all wish one day that this disease will be beat! I assume it is all about our immune system not letting that one cancerous cell thru!

May God give strength to all families and patients living with this everyday hoping there loved ones survive.

Thanks to all and for your prayers.

Louis

bobradinsky
Reply To: Fighting two cancer battles in one – brain and body

LouisB

This is strictly my opinion rather than advice. Based upon your wife's recent symptoms it appears that the benefits of Tarceva are beginning to diminish. Lynda has little to lose and possibly something to gain by going on the trial. Whatever decision you make will be the correct one and she will have many people praying for her. Bob

Dr West
Reply To: Fighting two cancer battles in one – brain and body

I don't have an answer to the truly unanswerable question of how best to oproceed, but I sincerely hope she has a better time moving forward, and I do think that AZD9291 is an appealing consideration if things are getting worse.

As for the terrible challenge of women getting lung cancer out of the blue, I wish we understood why women seem to be at higher risk for lung cancer. If we could figure out why some are prone to a genetically driven (associated with an identifiable driver mutation like EGFR, ALK, ROS, etc.) we could preselect which people should undergo screening. Otherwise, screening never-smokers or those with minimal smoking history, or younger than 55 or so are overwhelmingly likely to have any nodules detected on chest CT represent a false positive rather than real cancer that screening isn't really feasible unless we can identify the right high-risk population on which to focus.

Good luck.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

louisb
Reply To: Fighting two cancer battles in one – brain and body

Its been almost two months since my last visit. Busy, busy and stressed. May attend Boston event with my son. Quite the line up. Bravo !

We, Lynda and I, are two weeks away from our one year anniversary of learning Lynda was plagued with advanced cancer.

Lynda just finished her last pulsing of 1500mg Tarceva every 4th day. Will get her first AZ9291 this coming Thursday.

Lynda has been on high dosage Tarceva since March. It kept multi brain mets/lepto /cns in check.( WBRT -9 /13 ) I am concerned dropping Tarceva for AZ Progression liver forced the move.

I read about a patient leaving Clovis trial due to brain mets progression during treatment. I found no similar news on Astra. Would you all know on how well AZ is doing with brain mets ?

There is no doubt pulsing was right strategy for Lynda ( though maybe needn't such a high dose ) ...Lynda can be a first to either pulse AZ or mix the two ! Sounds crazy but so was 1500mg/4 day cycle.

Thanks

Louis

JimC
Reply To: Fighting two cancer battles in one – brain and body

Hi Louis,

In April of this year, in response to a similar question regarding AZD 9291 and brain metastases, Dr. West stated:

"I don’t believe I’ve seen any results to speak to this yet. This isn’t meant to imply yes or no. I don’t think that there have been enough people tested who have known brain metastasis to present an opportunity to determine an answer to the question." - http://cancergrace.org/topic/azd-9291-and-brain-mets#post-1263246

Good luck with the new drug!

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>

Dr West
Reply To: Fighting two cancer battles in one – brain and body

I can't speak to what to expect, but I wish her and your family luck on the trial. Please keep us posted!

I would just caution that as regards to the pulsed Tarceva (erlotinib), I don't think it's a great idea to presume that more and more and more -- the most treatment that can possibly be tolerated without dying from the treatment -- isn't necessarily the best way to proceed. I would be very uncomofrtable giving way more than has every been safely administered before, or trying a combination that has never been safely given and presuming that it will be well tolerated.

Good luck.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

louisb
Reply To: Fighting two cancer battles in one – brain and body

Life without hurdles would be too simple.

Lynda began the screening process for AZ9291 trial with a biopsy a couple of weeks ago. Monday she spent the day with ECG monitoring, Tuesday more ECG, blood samples, Wednesday eye test , ct scans and another blood sample.

Wednesday afternoon our world changed again. Ready to start ingesting new drug Thursday we were told Lynda may get bounced from trial. We were told that Lyndas liver enzymes exceeding permissible levels, 5 times normal values or lower. Lynda is at 7 times on one of two enzymes.

As a result DOC prescribed 16 MG dexamethasone for the next 6 days suggesting maybe that this may lower the enzymes. We are going back Monday for another blood sample and hopefully get under the max value.

We were blindsided by this criteria s it was not listed nor mentioned prior to the other day.

Any other suggestions on lowering these values? Can Dexa make things worse by keeping her liver working hard ? One enzyme is within criteria, the other is not. Are there vitamins, foods, supplements anything we can do to reduce this value in a few days ?

Txs

Louis

JimC
Reply To: Fighting two cancer battles in one – brain and body

Hi Louis,

The steroids can reduce inflammation in the liver, which can bring down those enzyme levels. Aside from that, it's typical to avoid alcohol and salt, and (more as a long-term strategy) eat a low-protein, high-carb diet.

Good luck in getting those numbers to acceptable levels very quickly.

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>

Dr West
Reply To: Fighting two cancer battles in one – brain and body

There isn't any specific intervention here, and the less added, the better. It's not likely that dexamethasone will make things worse, but there's no food or supplement that should be pursued to lower liver tests -- it's at least as likely if not more so that some well-intended supplement will make things worse vs. make things better.

Good luck.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

louisb
Reply To: Fighting two cancer battles in one – brain and body

Finally some good news.

Not sure if washout of Tarceva or 6 days of 16 MG dexamethasone or both caused Lyndas' AST level to drop an incredible 50%. She starts AZ9291 tomorrow !

Louis

bobradinsky
Reply To: Fighting two cancer battles in one – brain and body

Louis

Your wife's story is an amazing one. I wish her well on the new trial. Please keep us posted and good luck!

Bob

Dr West
Reply To: Fighting two cancer battles in one – brain and body

That's wonderful news, Louis! Good luck. It's a very promising drug in this setting!

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

louisb
Hi all,

Hi all,

Unfortunately yesterday we received news that my wife, Lynda, has disease progression in her liver. She was removed from trial.

At this point, we aren't sure what direction to go in... liver enzymes are up, obviously the liver is compromised and her cancer has mutated beyond T790M...

Doctors believe biopsying won't discover anything treatable, but I believe them to be wrong. Perhaps she could have mutated to a wild type? HER? MET? BRAF? KRAS?

Since dx sept 2013, she has only done Iressa 4 months, high dose Tarceva 7 months, 1 cycle of carbo/pem (which she had a bad autoimmune reaction causing myelitis which she recovered in 1 week), and then 3 months of AZD9291.

Any advise on next step would be greatly welcomed. Here are my thoughts?
She is stage IV NSCLC, exon 21, EGFR/T790M, non-operable liver/brain/bone/lung mets.

1) Afatinib + cetuximab?

2) Immunotherapy – does it have efficacy in the liver
a. Nivolumab
b. Ipilimumab
c. Pembrolizumab

3) Then what chemo is best to fight liver while continuing EGFR TKI for brain…
a. Gemcitabine, paclitaxel, docetaxel, carboplatin, pemetrexed

catdander
Hi louisb, I'm so sorry your

Hi louisb, I'm so sorry your wife has progression.

When lung cancer spreads to other parts of the body the tissue is still composed of lung cells and with the exception of the brain, responds the same whether in the lung or liver. Sometimes progression happens in one tumor but not another such as when there's progression in the liver but not the lung. This suggests the liver tumor has acquired a resistant mutation to the drug. So there's not one therapy that would be better for a liver met than a lung tumor. All of the chemo agents you've mentioned would be good choices especially if it was the platinum drug that caused Lynda's reaction. Everyone is different but alimta has the reputation of being less toxic than others and taxanes have a bad rep for causing neuropathy. Abraxane may be another option.

Since the immunotherapies aren't approved for lung cancer no one has experience clinically and all the data aren't in for our faculty to make a statement on one vs another.

As far as mutation testing there's a lot going on in the way of testing for mutations whether they're treatable or not. This is more of a social media advancement of finding more people with mutations rather than having a treatment to offer those with those mutations. Someone else is likely to have a better answer.

I hope Lynda does well with her next treatment for a long long time,
Janine

JimC
Hi louisb,

Hi louisb,

I'd agree with what Janine has said. There isn't one type of systemic treatment (whether chemo or targeted therapy) which has provided strong evidence that it is more effective against brain metastases. And any of the options you mention can be effective against tumors in both the lung and liver.

Certainly a new biopsy could be performed, but whether the information uncovered would lead to a specialized choice of treatment is not at all clear. It's becoming clear that many patients' cancers consist of more than one type, so that targeting one mutation that has been found may not be effective against the rest of the cancer cells which do not harbor that same mutation.

Good luck with whichever treatment choice is made.

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>

louisb
Thanks for feedback guys.

Thanks for feedback guys.

I am also concerned with overly targeting the treatments as it is clear that Lynda's cancer is more complex than a singular mutation.

What chemo's or combination of drugs would be best to treat liver while maintaining systematic treatment for Lynda's case?

Also any immuno feedback would be appreciated

JimC
louisb,

louisb,

None of the chemo drugs is any better specifically against the cancer in any particular part of the body such as the liver.

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>

Dr West
Louis,

Louis,

I'm afraid you're asking questions that can't be answered. None of the treatments that you are asking about has been studied enough to say what to expect. The various immunotherapy agents have all shown activity in a minority of people with previously treated NSCLC, but there is no way to compare the efficacy of one vs. another, nor against the long list of chemo agents that are potential options but haven't been studied enough to say how effective they might be in previously treated patients.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education