Adenocarsinoma Stage 4 EGFR progresses to LMD - running out of options - 1257064

bobradinsky
Posts:144

My wife was diagnosed with stage 4 adinocarcinoma NSCLC /EGFR with mets to liver, bones and brain in Sept. '12. Immediate surgery to replace right hip followed by 5 DVT's in legs in September. Started Tarceva in October. Surgery to right femur in January to stabilize femur. Radiation treatment to right femur in February. Radiation treatment to left femur in April. In May we learned that the cancer had spread to her spinal fluid - she has Leptomeningeal disease. She has been on pulsed doses of Tarceva for 4 weeks now and recent MRI indicates no progression (thank God), but our oncologist told us today that when pulsed doses of Tarceva stop progression he has no good options but hospice care. He said our prognosis is months rather than years.

Today was pretty tough for us because we are running low on hope. Are any of you aware of any clinical trials to stop progression of LMD in patients with NSCLC exhibiting EFGR? Are there any treatments that have had some success that anyone knows about? Still hopeful in St. Louis.

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Reply # - June 6, 2013, 11:12 PM

Dr West
Posts: 4735

I'm sorry to hear of these problems. Having diagnosed a patient of my own with an EGFR mutation with LMC today, I'm sorry to say that this remains a very, very difficult complication that doesn't have trials or any good answers. Though it may be considered damning with faint praise, pulsed Tarceva represents the best advance we've seen in LMC for lung cancer. I would say that most lung cancer experts don't feel that any other therapy provides any meaningful benefit and that other interventions, when tried, are mostly just done for the sake of doing something.

Good luck.

-Dr. West

Reply # - June 8, 2013, 05:23 PM

bobradinsky
Posts: 144

Thank you Dr. West for confirming what Dr. Govindan of Washington U already told us. We have tremendous confidence in Dr. Govindan, but the news was so disturbing that I wanted another opinion. I have been following your site for about a month now and really appreciate your great understanding, ability, and willingness to comunicate complex medical situations to caregivers and patients.. You are performing a tremendous service to the lung cancer community.

Late Friday we received results of latest scans and learned that mets in brain are stable, but met in liver has progressed slightly as well as primary in lung. and a new tumor has formed in the sacrum. They have suggested radiation for the new tumor. It appears to me that bone mets continue to worsen while undergoing Tarceva even when mets in other organs remain stable. Have you seen this in any of your patients?

I want to make the most of what time we have left together but we seem to be running into constant roadblocks. I am asking any of you out there how many good months we can expect before the Tarceva pulses lose their effectiveness and the LMC starts to progress?

Bob

Reply # - June 8, 2013, 06:00 PM

Dr West
Posts: 4735

I've definitely seen patient progress on Tarceva or chemo in one area while disease remains controlled elsewhere. How to proceed in such cases is always a matter of judgment, depending on how much progression we're seeing compared with how much of the disease burden is stable.

Otherwise, I think radiation makes sense to treat symptomatic bone lesions, but I don't think that in someone with LMC it makes sense to use radiation on disease that isn't causing symptoms just because it's growing visibly on scans.

Finally, I wish we could give you guidance, but LMC is really so variable that anyone giving you a prediction is really offering you little more than a wild guess.

-Dr. West

Reply # - July 1, 2013, 08:39 PM

bobradinsky
Posts: 144

This is an update on my wife's struggles with LMC. She just finished 2 weeks of radiation to T-12 which was symptomatic. At the same time she continued to pulse dose 1500 MG of Tarceva once per week. Her condition has continued to slowly decline. She has grown substantially weaker and can barely walk with her walker. She has falled twice at night while getting out of bed or trying to get to the bathroom without my help. Her urinary incontinence has worsened. Her memory loss and confusion has increased. Fatigue is a constant as well as pain primarily in her legs. Nausea is pretty well under control. She just developed a urinary tract infection and is taking Cipro for that.

Today we met with her oncologist and he offered us 3 options: (1) enter hospice care; (2) continue current treatments without change; (3) Add Alimta to her treatment plan starting next Monday and changing to pulsing of the Tarceva to 900 mg twice per week pending ironing out some issues with our insurance carrier. We chose the third option.

Dr. West (or any readers who may have some past experience with this 2nd line treatment) have you seen or heard of any success with this change in treatment? Our doctor said success was not highly probably but it was worth a try.

Let me tell you, LMC is positively horrible for both patient and family.

Bob

Reply # - July 1, 2013, 09:57 PM

JimC
Posts: 2753

Bob,

I am sorry to hear of how things are progressing with your wife's symptoms. I agree that LMC is a horrible complication and I'm sorry that you and your wife are dealing with it.

Although she did not combine it with Alimta (which she had used twice previously but on which her cancer had most recently progressed), a pulsed Tarceva dose of 600 mg every four days did not seem to slow my wife's LMC. At the time, her cancer was progressing in numerous locations in her brain and body, so that even if the LMC had been controlled it would not likely have improved her outcome.

I hope that the new regimen will help your wife. The two of you will be in my thoughts each day as you walk this very difficult path together.

JimC
Forum moderator

Reply # - July 2, 2013, 08:00 AM

cards7up
Posts: 636

I'm sorry to hear what your wife is going through and you too. LMC is very hard to fight and I think the treatments are just trying to extend her life for a very short period of time. Hospice and palliative care may be her best option at this time. There's only so much a body can take. Though I'm not a medical person, I've had family members pass from lung cancer and I myself have LC. These are tough times and tough decisions. Keeping you both in my thoughts and prayers. Take care, Judy

Reply # - July 2, 2013, 08:35 AM

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Reply # - July 2, 2013, 08:30 PM

bobradinsky
Posts: 144

Thanks to all of you for your words of encouragement and prayers. I appreciate it more than my words can express. Jim-I have a question for you regarding insurance. I am having a problem with my insurance company. They denied my doctors request for 40 tablets per month saying that quantities of more than 30 per month were considered not medically necessary. They went on to say that there are no reliable clinical trials supporting the safety and effectiveness of Tarceva when given greater than 1 tablet per day. They will not cover 10 per week. So I will have to pay for the additional 10 or more per month out of pocket. That can add up pretty fast.

Did you or anyone else reading have any experience convincing an insurance company that pulse dosing Tarceva requires more than 7 tablets per week and is medically necessary for patients being treated for LMC?

Bob

Reply # - July 2, 2013, 09:25 PM

JimC
Posts: 2753

Bob,

I'm sorry you're having trouble with the insurance company, but it's not that surprising. Pulsed tarceva is not really an established treatment and even when it has been used the dosage has not been consistent. We went with a dosage that had been used in some early instances, 600 mg every four days, which is the same total amount as the standard dosage of 150 mg/day. So we had no insurance problem (in fact I think the prescription still said 1 pill per day when we switched).

The only way I know of to get something like that approved is for your doctor to submit as much data as possible to try to prove the efficacy of the pulsed dosing. Our doctor did that when we wanted to use abraxane instead of taxol. It was not approved, but there was plenty of evidence that it was effective and safe. Our doctor submitted a number of trial results to our insurer, and they approved it despite the high cost of the drug.

The hurdles you face may be a relative lack of trial data on pulsed tarceva, plus the high cost not only of tarceva but also alimta, which is a very expensive chemo drug.

JimC
Forum moderator

Reply # - July 2, 2013, 09:48 PM

Dr West
Posts: 4735

Unfortunately, there's really not much data to go on here, so it'll be a tough argument to make. Insurers are increasingly restrictive of the use of expensive medications, covering them where there are sufficient data to support it, but they aren't providing it where it's based on a possible but very unproven benefit. At this point, pulsed Tarceva is based more on a few scattered anecdotal reports of responses than hard evidence, and certainly no real studies. I suspect the choice is going to be the typical number of pills for a month, or pay for the difference yourself.

-Dr. West

Reply # - July 3, 2013, 09:29 PM

bobradinsky
Posts: 144

My oncologist will contact my insurer directly and we should have some feedback by end of week. Anecdotally my wife pulsed 900MG Tuesday. Prior dosing was last Thursday when she took 1500 MG. She had her best day today that she had in weeks. Reduced pain, much less confusion, improved gait, improved mood and personality. It's great to have her back. I hope to keep her this way as long as possible.

Bob

Reply # - July 11, 2013, 09:33 PM

bobradinsky
Posts: 144

You were absolutely correct Dr. West. After numerous phone calls by myself and peer discussions between my oncologist and their pharmacy and medical staff we were turned down. My insurance will not approve the increased dosage, the reason given that taking high doses intermittenly are considered investigational and investigational therapies are not covered under my benefit. So I will continue to receive 30 tablets per month for $1.00 per tablet and must pay slightly under $200 per tablet for the 18 additional tablets she will require each month.

All the while Genentech, the drug maker, offers financial assistance for co-pays on Tarceva of $24,000 for families making under $100,000 and $9,000 for those making $100,000 or more. I was told yesterday that I was elligible and given a case ID number only to be told when I contacted the pharmacy that they could not honor it because we were over the standard dose of 30 tablets per month.

Not only do I have a very sick wife, but I am starting to have issues with anger management after dealing with our drug industry that can behave at times like drug dealers. Bob

Reply # - July 12, 2013, 07:31 AM

sherrys
Posts: 212

Bob, I'm so very sorry for what you and your family are going thru. I lost my dad in November to lung cancer, and we do believe that he developed LMD in the end. It is frightening to watch and my heart goes out to you.

While Genentech was able to help us with the Tarceva (we didn't do pulsed dosing as he was off of it the last 6 months of his life), I wanted to tell you that we were also able to find help thru the Cancer Care Foundation. They offer grants to cancer patients to help with bills. Once they approve you for a grant, you just have to submit your bills after you have paid them, or they can be submitted directly to them. The amount of the grant is income-based and also dependent on available funds. However, if they have no funds left, they can direct you to organizations that do. I have also heard that the American Cancer Society will offer a small amount to anyone diagnosed with cancer, but I don't know if that is true. Even if it is $200, that helps.

Once we knew that dad's cancer was seemingly spiraling out of control, we looked at the options offered to him. One was to continue the alimta that he was on at that time, and the other was hospice. It is extremely difficult to make a decision to stop active treatment and decide on hospice. We all feared that we were choosing his destiny by choosing quality over quantity of life. In the end, I'm so thankful that we chose hospice. They were able to keep him very comfortable, and they offerred and incredible amount of assistance to our entire family. He stopped suffering the day hospice entered our lives.

Again, I'm sorry you're facing this point in your wife's journey. I can't begin to imagine how hard this is for you and your family. She is fortunate to have you - the love you have for her is so clear in all of your posts. I wish there was something else that could be offerred to you except the support of everyone here.

Reply # - July 12, 2013, 08:12 AM

Dr West
Posts: 4735

I think these are big concerns. The challenge is that these drugs are expensive, the companies and insurers are all looking for profits, and it's hard to know where to draw a line for medications that cost $5-10K/month. These are likely to be covered where there's good evidence of a benefit, but when it's a case report or two, companies can't necessarily feasibly cover tens of thousands of dollars of treatments per patient being treated based on an idea that this intervention could possibly be helpful.

I'm not trying to be an apologist for the insurer or anyone else, but I believe that your (very understandable) perspective is that your wife should have all treatments that could possibly be helpful, no matter how great the cost and how limited the evidence. I don't think that this can realistically be expected to be a viable standard on a societal level. And people aren't saying that she/you can't get treatments if you want to pay for the difference between what the evidence supports and what is favored beyond that, but that there is going to be a higher standard of evidence to support treatments that are paid for with communal insurance premiums and taxes. The money spent on a treatment that might possibly help one person based on weak evidence is money that isn't available to be spent on other interventions that are known to help people.

-Dr. West

Reply # - July 17, 2013, 12:03 PM

bobradinsky
Posts: 144

Dr. West-thank you for the larger perspective. I do understand the rational but still have some trouble at times seeing the forest for the trees, especially when I see the types of salaries these Insurance CEOs are pulling down.

Thanks Sherry for your advice about persuing other agencies for financial assistance. I did call back Genentech and asked them if there were any other avenues for assistance. They brought to my attention Genentech Assess to Care Foundation. They offer free drugs if you qualify, but they do require means testing. You must make under $100,000 adjusted gross and they require your previous years tax return. Since both my wife and I were employed last year we fail to qualify, but I sent in a request that they make an exception since we both retired to deal with her illness and would quakify based on 2013 earnings. They told me it would take up to 2 weeks to make a decision. I hope they come thru.

In the mean time my wife is tolerating the new pulse dose of 6 150 mg tablets twice weekly plus her Alimta every 3 weeks and has remained stable. She is more alert, walking better, urinary incontinence improved, no headaches, and generally better than before.

I will gladly continue paying for the additional Tarceva she requires if they turn me down. Bob

Reply # - August 8, 2013, 09:10 PM

bobradinsky
Posts: 144

This is an update on my wife's journey with LMC. Since my last post she continued to pulse dose 900 mg Tarceva twice weekly and added Alimta on a 3 week interval schedule. She continued to hold her own and we were even able to go out to lunch with another cancer patient and his wife as recently as last Wednesday. By the end of last week her symptoms started to worsen. Tuesday August 6 she fell trying to get out of bed on her own and was too weak to call me for help. I discovered her at 6:30 in the morning and called 911. Fortunately no bones were broken and we were home by 2:30. Her symptoms since have continued to deteriorate. She can no longer walk with a cane or walker, she has lost significant muscle strength and control: I now have to feed her and she has a great deal of trouble swallowing. She hears well but has difficulty stringing words together most of the time. She is now totally incontinent and cannot control her bowells or bladder. Her oncologist strongly suggested we end active treatment and begin Hospice. I am broken-hearted, exhausted, and worried about breaking the sad news to her tomorrow - the same day our youngest daughter comes home from New Jersey to visit. LMC really sucks. Bob

Reply # - August 9, 2013, 12:05 PM

carrigallen
Posts: 194

Since insurers use the NCCN guidelines as part of their treatment approvals, I'll send a suggestion to the committee to see if the guidelines could be revised to include this. As patients with lung cancer begin to live longer, the problem of inadequate drug concentrations in the brain is going to become an increasingly bigger issue for everyone. Good luck with the treatment, and hope she continues to enjoy what time you have together.

Reply # - August 9, 2013, 09:37 PM

bobradinsky
Posts: 144

Dr. Creelan

Thank you for your reply and for offering to bring this problem to the proper committee's attention about revising dosing guidelines in cases of brain and CNS involvement. I believe it is important and the time is right. Interestingly my wife's symptoms started (actually suddenly) abated early Friday and she returned to the condition she was in last week which could be described as having moderate neurological symptoms.

She thought the change in symptoms was due to recovering from her fall which did include her head coliding with the bedside table Tuesday 8/6. I discussed the change with her oncologist and he agreed to let her continue on her Tarceva pulse dose as long as her swallowing was not impaired.

Tonight I discovered that we had somehow forgotten her 20 mg dose of nortriptylene on Monday 8/5 and then discontinued the dose altogether on Tuesday going forward for fear of aspiration. It occured to me that a rapid discontinuation of this drug could have induced withdrawal symptoms that exacerbated the symptoms she was already having from LMC.

Do you or anyone else out there familiar with drug cessation think my conclusion is plausible?

Should we continue to keep her off the nortriptylene or gradually reintroduce it? I would like to keep her off of it if it is not necessary to her cancer maintenance. This drug was prescribed long before cancer and may no longer be needed.

Bob

Reply # - August 10, 2013, 08:31 AM

Dr West
Posts: 4735

I don't think that the nortriptylene is at all likely to be the leading culprit here, I'm sorry to say. Though it may have some effect, the course of events you describe is unfortunately exactly what we tend to see with LMC.

-Dr. West

Reply # - August 10, 2013, 08:46 AM

catdander
Posts:

A quick look around google found this, "Continue to take nortriptyline even if you feel well. Do not stop taking nortriptyline without talking to your doctor. If you suddenly stop taking nortriptyline, you may experience withdrawal symptoms such as headache, nausea, and weakness. Your doctor will probably want to decrease your dose gradually." http://www.nlm.nih.gov/medlineplus/druginfo/meds/a682620.html

Reply # - September 27, 2013, 11:47 PM

bobradinsky
Posts: 144

It is with a heavy heart that I report today that my wife Beth passed away at 8 AM on Friday Sept. 27 after a valiant 1 year battle with stage 4 metastatic adinocarcinoma NSCLC / EGFR +. Her cancer was quite advanced when we discovered it in September '12 with mets to bones, liver, and brain. She gave it her all and never complained or asked why me. She had excellent medical treatment at Washington University Cancer Center at Barnes-Jewish Hospital in St. Louis, MO. Her oncologist is one of the best in his field, Dr. Ramasawamy Govindin. In May she developed LMC and we blasted it with pulse doses of Tarceva beyond standard guidlines plus Alimta. She won a few battles and kept a positive attitude throughout, but LMC is a brutal foe. She entered Hospice this past Monday unconscious, unhable to eat or drink, only opening her eyes for a few moments when the nurses turned her. She died surrounded by family and friends.

I miss her badly; my heart is heavy; I loved her with all my heart.

If any of you want to learn more about Beth's battle with lung cancer google Bill McClellan St. Louis Post Dispatch, look for the entry on columns and page down to the July 21 column titled Bill McClellan: Diagnosis Feels Like Falling Through the Ice.

I appreciate the unsugared and sage advice and comment from Dr. West, his colleagues, and moderators. I also appreciate the advice, encouragement, comradship, and sympathetic hearts from fellow subscribers. Grace has helped me navigate through this ordeal and made me a better caregiver for my wife. I am thankful and hope to continue posting from time to time. Peace, good health, and good luck. Bob

Reply # - September 28, 2013, 07:16 AM

chebird
Posts: 104

Bob,

I am so terribly sorry for loss.

We just found out yesterday that my husband has LMC, so your postings have been so valuable to me.

May God surround you with love and comfort as you wade through this season of grief.

Holly

Reply # - September 28, 2013, 06:57 PM

JimC
Posts: 2753

Bob,

I'm very sorry to hear of Beth's passing. I know just how tough this past year, and especially the last few months, have been for both of you. Though there is nothing that can ease your pain at her loss, I hope that you can find some comfort in the fact that she is now free from suffering and pain. Also, please know that you do not walk this road alone; there are many of us here at GRACE who hold you close in our thoughts and hope that you can find peace and comfort in your memories of the life the two of you shared.

JimC
Forum moderator

Reply # - September 30, 2013, 02:26 PM

njliu
Posts: 142

Bob, I am very sorry for your loss. I am also very thankful to you for so generously sharing in so much details of the journey. It is of tremendous value to others that seek knowledge of how LMC could evolve and behave, in better prepared to deal with such an unfortunate development. At this difficult time in your life, we pray that God will grant you the serenity and peace that you need to get through this. Stay strong and take care.
NJ

Reply # - October 22, 2013, 03:37 PM

laya d.
Posts: 714

Bob:

I just came across this and am very sorry to learn that you wife passed on last month. I wish you strength and peace, and I thank you for continuing to contribute to our GRACE community here. This loss weighs extremely heavy.

Laya

Reply # - October 22, 2013, 09:45 PM

bobradinsky
Posts: 144

Laya

Thanks so much for your words of condolence and to all the others who expressed similar sentiments. I am still in somewhat of a fog of grief, but somehow following GRACE helps me, and if I can console or help anyone it honors the love of my life, Beth. Bob

Reply # - October 23, 2013, 08:23 AM

sherrys
Posts: 212

Bob, I'm so sorry. Like Laya, I had not seen this before. I admire the fact that you have been able to be so generous and helpful in your posting. What a great way to honor Beth. I only hope that when I'm gone my husband will speak as lovingly about me. She was a lucky woman to have you.

Reply # - September 27, 2014, 03:10 PM

bobradinsky
Posts: 144

Dear Grace fellow voyagers:

One year ago today my dearest wife, Beth, passed away at 8:00AM peacefully surrounded by her family. She was diagnosed in early September 2012 and fought bravely for slightly over one year. She had excellent medical care at Siteman Cancer Center in St. Louis and one of the top lung oncologists in the nation, Dr. Govindan, but it was not meant to be. She was one of the unlucky 15% non-smokers who get lung cancer and although she was EGFR positive she had only an average response to Tarceva. To make matters worse she developed LMC and from that point on she deteriorated rather quickly.

Around the time she developed LMC I discovered Grace and I quickly became a member of the family. I would like to take a moment to thank Dr. West, his medical associates, facilitators, and fellow voyagers for being there for me when I needed help. Grace is still an important part of my life and I try to check what's going on every night before going to bed. I try to lend a layman's advice to LMC patients and caregivers and offer support, prayer and condolence where and when appropriate. I enjoy being part of the Grace family, and feel in this way I can honor my wife's memory.

I am not very computer savvy but I recently discovered how to change my nickname form BobRadinsky to Bob4Beth. Thank those of you who were there for Beth and me. It meant a lot.

Bob

Reply # - September 27, 2014, 04:51 PM

njliu
Posts: 142

Hi Bob, thanks for being here to render support to this forum. You have been inspirational to me in your unreserved care and love to Beth in her battle against this illness. Take care.

Reply # - September 28, 2014, 08:48 PM

bobradinsky
Posts: 144

NJ

Thank you so much for your kind remarks. This has been a bitter-sweet week-end for me. My wife's memory keeps our family firmly together, but our home is still very empty without her.

I hope your wife is still doing well and continued good wishes to both of you for many years to come.

Bob

Reply # - September 28, 2014, 11:07 PM

catdander
Posts:

Hi Bob, I know this must be a bitter sweet time for you and the family. I'll keep you in my thoughts.

Janine

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