tarceva - memory loss - 1257785

daisy1963
Posts:41

Hi there,
Mom, stage iv nsclc; active mets in liver, spine and brain; on tarceva for 5 weeks; memory going down rapidly; wondering (think i know the answer ...) anyone with side effect of memory/cognitive decline associated with tarceva - perhaps someone out there with these symptoms (with no brain mets);
we are scheduled to scan body and brain in 3 weeks; but thinking we need to scan brain now... i will say tarceva seems to be hitting the liver tumors, as she has absolutely not been getting worse in that area;
she is also on: coumadin, keppra ER, Toprol, a blood pressure medicine and celexa (pharma cocktail :( )
many thanks,
leah

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Reply # - July 8, 2013, 08:36 PM

Dr West
Posts: 4735

No, we wouldn't expect Tarceva (erlotinib) to cause memory problems or other neurologic symptoms.

Good luck.

-Dr. West

Reply # - July 9, 2013, 07:16 AM

daisy1963
Posts: 41

Thank you; was my thought as well. We did have a significant change last week as mom was put back on coumadin; had previously had a filter put in and was off it for a month, but more clotting. And yesterday her INR was 6 - dangerously thin; and the decline does coincide with coumadin added on (the significant decline) ...was showing a little before. The other thing is we have by week gone down on Decadron from 8mg to 4mg due to all it's side effects ... so micro or macro brain swelling (in addition to active brain mets) in the mix. Just wanted to lay that out there for anyone else in my shoes. We're requesting scan asap to see what is happening and will report back.

Reply # - July 9, 2013, 08:01 PM

JimC
Posts: 2753

Hi daisy,

Good that you're getting a scan to see what's up. But even if the brain mets aren't progressing, sometimes reducing the decadron happens too fast and an upward adjustment needs to be made, at least temporarily.

JimC
Forum moderator

Reply # - July 10, 2013, 10:12 AM

daisy1963
Posts: 41

Well GOOD NEWS!! MRI is clear - brain mets not showing; +1 for Tarceva!!!
I forgot we also added a drug for incontinence last week; so three drug changes; we'll be upping the Decadron a smidge and see what part of her cocktail we can eliminate or reduce; fyi mom on 100 mg tarceva;
body scan july 30; looking for improvement in liver (lots of mets), spine (1 met) ... and no other progresion; mom is the one who also showed ALK mutation, but i havent' gotten clarity on questions Dr West asked me about on that.

Reply # - July 10, 2013, 10:53 AM

marisa93
Posts: 215

That's great news on your mom's MRI!!!! Hope her next scans show improvement elsewhere! Also hope the med changes get everything straightened around.

Best wishes,
Lisa

Reply # - July 10, 2013, 11:56 AM

catdander
Posts:

That's great news Daisy! And I'm very glad to hear everyone is working on meds.
It warms my heart when I read about loved ones as caregivers working hard to make those with cancer get the most out of life, i.e. feel as well as possible.

Janine

Reply # - July 17, 2013, 12:36 PM

bobradinsky
Posts: 144

Hi Daisy. I'm glad to read that your mom is improving. On July you asked if anyone had symptoms of memory loss and cognitive decline while on Tarceva. My wife, Beth, has been taking Tarceva since October last year. She began to show neurological symptoms in May, headaches, memory loss, cognitive decline, shuffeling gait and incontinence. I noticed in some of your posts you also mentioned a decline in mobility and incontinence.

I will defer to Jim, our moderator, or Dr. West but some of these symptoms are consistent with Leptomeningeal Carcinomatosis. Perhaps they can give you advice on whether to have her tested.

Bob

Reply # - July 17, 2013, 02:58 PM

daisy1963
Posts: 41

bob,
thank you much for your reply .... since she just had a brain scan - would that have been picked up?
warm regards,
leah

Reply # - July 17, 2013, 08:44 PM

bobradinsky
Posts: 144

Leah

My wife had 2 small brain lesions that were not progressing due to the Tarceva. Her brain scan did not pick up the LMC. Since she was having headaches and other neurological symptoms they decided to give her a spinal tap. That is hoe they discovered it. I hope Jim or Dr. West weigh in on whether it would be prudent to have this test done on your mother based upon her symptoms. Every case is so different.

Bob

Reply # - July 17, 2013, 09:32 PM

daisy1963
Posts: 41

Thank you Bob; very sorry you are both travelling on this journey; my best to you both;
Am calling her doc tomorrow to ask about it; this forum is invaluable to us caregivers;
I hate cancer,
Leah

Reply # - July 17, 2013, 11:46 PM

JimC
Posts: 2753

Hi Leah,

I can add that in my wife's case an MRI finding of a very small anomaly that was suspicious for leptomeningeal involvement, combined with some neurological symptoms (unsteady gait, focal weakness), led her oncologist to send her for an evaluation by a neuro-oncologist. He gave her a complete neurological exam and didn't feel that there was sufficient concern to order a spinal tap. On the other hand, he told us what to watch for, including double vision, which she hadn't experienced to that point. When we left the exam room, she saw a double image of him down the hallway. Her symptoms developed quickly enough that we never did need a spinal tap to confirm the diagnosis of LMC. So although a neurological evaluation might be a good idea, it can be as inconclusive as a spinal tap.

I hope that her symptoms are medication-related.

JimC
Forum moderator

Reply # - July 18, 2013, 08:19 AM

daisy1963
Posts: 41

Thanks Jim for the information. Just for other folks knowledge - and we'll see what turns up - the incontinence started before the discovery of the large brain tumor (removed in January); as did the parkinson's like symptoms, cognitive decline was also ongoing - but she definitely had a period after surgery with anticholenergic toxicity and was very 'loopy'; we got that cleared up at inpatient rehab when she wasn't in control of her meds. Benedryl along with xanax and bentyl for IBS (in addition to all the other drugs) pushed her into toxic burden. She sees neuro today, but don't think this will be within his realm (?). No headaches, but definitely focal weakness (happened before brain tumor - lost right field of vision in both eyes). Will try to get from her about double vision... she has been known to 'hide' her symptoms from us (protection/denial)...

Reply # - July 18, 2013, 09:24 AM

bobradinsky
Posts: 144

Good luck with your appointment today. I forgot to mention in my post yesterday that my wife, Beth, also has problems with her vision and often complains about double vision. She has great difficulty reading.

Bob

Reply # - July 18, 2013, 05:15 PM

daisy1963
Posts: 41

Mom was too weak to go to the appointment; Dad said can hardly stand; told Dad to take the appointment on the phone. Neuro wants to bump her Decadron from 5mg to 16 and go full on the sinemet to see if can jump start her system. We tried the sinemet for a couple of weeks in June and saw no change; all along the way, we have definitely seen benefit from the bump in Dex - but that drug has really ruined the rest of her body ...in my opinion.

Called into oncologist - nurse said no way of testing for lepto which obviously there is. So i'll call in the morning and talk about whether we need a spinal tap. Bob - can you advise on the ease/difficulty of the spinal tap?

Reply # - July 18, 2013, 08:01 PM

bobradinsky
Posts: 144

From our experience docs are not too wild about doing spinal taps because of the high risk of infection. In Beth's case the test was done by the hospital resident. I was in the hospital room at the time. It was not painful and went relatively fast. Her spinal pressure was high which I later learned was an early indicator. They then analyzed her spinal fluid and made the diagnosis. I have read that it sometimes takes up to 3 procedures to confirm a diagnosis. Her procedure was done at Siteman Cancer Center at Barnes Hospital in St. Louis.

Bob

Reply # - July 18, 2013, 08:12 PM

bobradinsky
Posts: 144

Leah

I should also mention that Beth was often extremely tired and weak - could hardly walk, just shuffle with a cane or walker. What did seem to help her some during these periods was to take her to the hospital and give her a 2 hour saline IV. It helped to rejuvinate her. We would often do it Friday, Saturday and Sunday.

Since she has been pulsing the Tarceva she has not needed IV's for several weeks.

Bob

Reply # - July 18, 2013, 09:42 PM

Dr West
Posts: 4735

It's not that a lumbar puncture (LP, also known as "spinal tap") can't be done to make a diagnosis, but as Bob mentioned, it's not that reliable. Even when someone actually has leptomeningeal carcinomatosis (LMC), it's not uncommon to have the first few LPs come back with no cancer cells in the cerebrospinal fluid (CSF). Sometimes 3 or more LPs can be done and still not make a diagnosis. And sometimes the procedure is uncomfortable, or a patient will get a bad headache for hours or a day afterward.

But another issue with making the diagnosis of LMC is that there isn't a huge amount of enthusiasm for going through a potentially uncomfortable invasive procedure when there's generally so little to be done with the result. A minority of patients with LMC as a complication from a lung cancer that has an EGFR mutation can respond to pulsed Tarceva (erlotinib), but our treatments tend to be maddeningly ineffective in most cases, so there isn't a lot of incentive to confirm a diagnosis you can't treat effectively once you ultimately make the diagnosis.

-Dr. West

Reply # - July 24, 2013, 06:59 AM

daisy1963
Posts: 41

Friends,
Mom continues to decline; more immobile, back to incontinence which was responding to medicine (forget the name), memory loss, sleeping all the time (depressed as well, no surprise), double vision. Based on your prior posts and my research does sound like LMC.

Her brain scan 2 weeks ago negative (for prior mets); 100 mg tarceva; next scan July 30 for body. When called onc they said no way to check for lepto. Looking for advice as to what to expect with lepto and any way we can determine if time to stop tarceva and proceed with hospice. We have not tried nor been offered pulsed tarceva. I will ask onc. but concerned about just making her slightly better to 'linger' in her no QOL state. However, if pulsing would increase QOL, would love to try it. Bob, what would you suggest based on your wife's experience to date?

many thanks
leah

Reply # - July 24, 2013, 02:11 PM

JimC
Posts: 2753

leah,

I'm sorry to hear of your mom's decline. It sounds very similar to what happened with my wife. She tried pulsed tarceva for a while (600 mg each 4th day) but it did not appear to have any effect whatsoever; it certainly did not improve her QOL. It seems that it helps some people but not others. It may be a question of whether the cancer cells in the CSF are the original EGFR mutated cells so that getting more tarceva in the CSF is helpful, or if they are cells which either weren't sensitive to an EGFR TKI or have mutated to become resistant.

Whether pulsed tarceva is pursued or not, I hope that your mom is as comfortable as can be, and I wish for comfort for you and your family.

JimC
Forum moderator

Reply # - July 24, 2013, 05:40 PM

daisy1963
Posts: 41

Jim,
I missed the call from her oncologist; he did leave msg saying that yes, it might be best to go on hospice. I wanted to ask if any reason to try pulsing the tarceva and/or get the iv infusions that Bob mentions above. Will try to speak with him tomorrow. Can i ask you how long your wife lived after LMC and was the process particularly difficult for her (to whatever comfort level you feel sharing that information). The hope in me wants her to have the CT scan to see what is happening; this twist with LMC and it not being easily diagnosed leaves us in no-man's land. IE don't want to enter hospice if tarceva is in fact doing something, but I suppose the fact that she is completely immobile should give me the answer (that I don't want to hear).
btw, I kept seeing your picture with marisa and then would see you on her picture; thought i was seeing things, then saw about you two finding each other; made me cry; happy for you both ;)
Leah

Reply # - July 24, 2013, 08:26 PM

bobradinsky
Posts: 144

Leah

Based on the symptoms you describe it does sound like your mom has LMC. Like Dr. West says it may not be wise to put her thru this type of invasive procedure, especially one in which the results are often inconclusive.

My wife was relatively strong, had the EGFR mutation, and wanted to take an agressive approach so we decided to pulse the tarceva. When we were getting poor results from pulsing 1500 mg (10 pills) once per week we went for broke and tried pulsing 6 pills twice per week plus added Alimta every 3 weeks. After 2 weeks she has improved but still has great difficulty walking, incontinence, double vision, memory lapses, and much fatigue. We are off the IV's for now. I see a slight decline every day but cherish whatever good hours we have together.

I must mention that our insurance only covers 30 pills of Tarceva per month, so I am paying out-of-pocket for the additional 18 pills we require.

I know what a terrible thing this is for you and your family. I will pray that your mother remains out of pain and as comfortable as possible. It can be just as difficult for the caregivers because of the worry and unknowns you are dealing with. The best we can do is comfort each other. My heart goes out to you.

Bob

Reply # - July 24, 2013, 09:05 PM

JimC
Posts: 2753

leah,

In my wife's case, I had noticed some symptoms (especially an unsteady gait) in July, then in late August the MRI showed the anomaly suspicious for LMC, and in late September she had the evaluation by the neuro-oncologist I wrote about above. At that point he did not see sufficient symptoms to diagnose LMC or order a spinal tap, and she was doing well enough to get to that appointment without trouble, as well as an appointment with her oncologist the day before. In fact, after the oncologist appointment she felt well enough to go out for a meal to note our 30th wedding anniversary.

But after the neuro appointment, progression was very quick. The last three weeks or so she could not walk without assistance and had a great deal of trouble swallowing, and the final week or two she was asleep most of the time. She was at inpatient palliative care for most of those last three weeks, with a brief stint at home a week before the end, and I had great difficulty getting her into and out of the house (just a few stairs) when I took her home and then back to palliative care.

And yes, when alert she was depressed and frustrated by her limitations, and she did need significant medication to control her pain. I think what she feared most was that she would be in this condition for an extended period of time. Two days before she passed, when her oncologist suggested that pulsed Tarceva was not helping and that he wasn't recommending further treatment (that was his opinion earlier, but she wanted to try whatever she could, thus the pulsed Tarceva), she was at first angry but then I believe a kind of peace came over her, knowing that the end was near and her suffering would soon be over. She had the best and most alert day and a half after that, talking and laughing with friends and family before passing the following day.

I wish I could tell you whether to choose more treatment, but of course I can't. I just hope your choice proves best for her.

JimC
Forum moderator

Reply # - July 24, 2013, 09:30 PM

daisy1963
Posts: 41

Bob and Jim,
Thank you for sharing your experiences. Mom is not in pain or suffering. My sister had a lovely conversation with her tonight about her thoughts; she thinks about coming and going and does want to be a bother. Sister assured her that she'd been there for us all these years and she was not a burden and we will be there with her as long as she wants to / can be here. We have 24/7 care as she wishes to be at home. Based on what you guys are saying, I will suggest we consider status quo until mom wants to quit. The tarceva causes her no discomfort (perhaps the added fatigue) but it might be part of what is keeping her out of pain, as the cancer was progressing rapidly in her liver and brain. Bob, will keep you and your wife in our thoughts as we travel this journey. My heart goes out to you. And Jim for your unending support, you are doing a world of good by continuing to be involved. Namaste, Leah

Reply # - July 24, 2013, 09:57 PM

Dr West
Posts: 4735

Leah,

I'm sorry for what your mother and whole family are going through. I must admit that I haven't been blown away by the efficacy of pulsed Tarceva for LMC. I think its potential value tends to be overstated because occasionally we'll see a response, but it's pretty darn uncommon, to be honest. I think it would be quite reasonable to not do pulsed Tarceva. It's also perfectly reasonable to do it, but I wouldn't be haunted by regret if you don't. It's good to "hope for the best, but prepare for the worst", rather than have any great expectations of effective treatment for LMC, I'm sorry to say.

-Dr. West

Reply # - July 28, 2013, 12:01 PM

daisy1963
Posts: 41

Bob, Jim and Dr. West,
Mom is leaving us. I came here Friday night (live 4 hours away) and spoke with her on the phone on my drive. She has been asleep ever since. Fortunately she is in mimimal pain which we gave her a small dose of morphine for. We are stopping Tarceva and will be renewing our relationship with Hospice tomorrow. If in fact, we do have LMC, the decline has been lightening fast. No real way to know other than match of symptoms and lack of any other obvious issues (prior liver mets/brain mets).... Considering what could be, we are grateful for her lack of pain and anxiety.
Warm regards,
Leah

Reply # - July 28, 2013, 12:45 PM

JimC
Posts: 2753

Leah,

I'm so sorry to hear your sad news. But I'm glad you spoke to your Mom on Friday, that you are there now and that she is in minimal discomfort. I hope that her passing is peaceful and I will be keeping you and your family in my thoughts, wishing peace and comfort for each of you.

JimC
Forum moderator

Reply # - July 28, 2013, 01:55 PM

Jazz
Posts: 279

Dear Leah,

What a heartbreak this has all been for you. Wishing you strength and comfort during this time. I'm sure your mother is eternally grateful for you and your sister, and all the love and care you've given her. I echo Jim's sentiments and thank you for sharing her journey with us.

Peace and light to you,
Jazz

Reply # - July 28, 2013, 03:34 PM

catdander
Posts:

Leah, I feel I could have written very similar sentiments 4 years ago when my dear mom left our world. She was surrounded by her children. With overwhelming sadness there was also great serenity in my being that I attribute to her own peaceful going. I hope the same for your mother.

Namaste,
Janine

Reply # - July 28, 2013, 06:40 PM

double trouble
Posts: 573

Leah,

After more than 20 years I look back on my mother's passing and am still so grateful that I was there. You remain in my thoughts.

Debra

Reply # - July 28, 2013, 07:38 PM

bobradinsky
Posts: 144

Dear Leah

I am so sorry for you and your family to learn of your mothers rapid decline. It is fortunate that she is in minimal pain and sleeping peacefully. My oncologist told us that it is not uncommon with LMC for a rapid decline. In light of the circumstances I think your decision is very appropriate. Peace to all of you, especially your mother.

Bob

Reply # - August 2, 2013, 06:25 AM

daisy1963
Posts: 41

Bob,
Have been thinking of you and your wife. I hope her journey is easy on her and your family. Mom has been sleeping since last friday. Her arms starting hurting and the only thing I could imagine is there is cancer on/near a nerve root there. And her left arm is folded up near her head in a sort of awkward position. When we tried to move it, there was great pain, so it is in that position and she now appears comfortable. We are on 30mg long acting morphine 2/day with breakthrough liquid at the end of the morphine period. Besides Keppra, the hospice doc took her off all additional meds. It appeared, that the disease paralyzed her.

On Tuesday she lost the ability to suck from a straw and swallow. We have moved to rectal medications and liquid morphine for breakthrough pain, for which there has been little. The hospice nurse put her on a catheter which was a great relief, as moving her seemed to be very painful for her. We did get supplemental oxygen as it seemed an effort to breathe and that has made her and us so much more comfortable. Her blood pressure is dropping by day and is running a fever. We have 24/7 care in the house which has been so helpful. Many visitors and my moms grandchildren and great grandhildren here daily which absolutely lightens the energy. We are comforted that we were able to keep her home and are going through the transition like the old days where family and friends are circled to support her and us.

As of yesterday, I was till able to get a repsponse from her as I whispered in her ear. Her breathing would quicken and she would make little sounds. I told her that I loved her, was with her, that i would be ok and that I knew she was communicating with me

Jim, Jazz, Janine, Debra, thank you for your words of encouragement, namaste, Leah

Reply # - August 2, 2013, 10:05 PM

bobradinsky
Posts: 144

Dear Leah

I had a rather long night with Beth. She didn't take her Tarceva until late and then I promised her I would wake her up in an hour so she could have a snack and the rest of her nightly meds and just as I was about to log on she said she had to go to the bathroom which is a lengthy process getting her out and then back into bed. So here it is 11:45 and I read your first post about how poorly your mom was doing and then later of her passing. I am heartbroken for you and your family. Please accept my heartfelt condolences and the only other thing that I really can say is that I wish you peace and healing.

I truely appreciate, while knowing how difficult it was for you, describing her last days and hours because it helps me better understand LMC and I hope I can deal with the final days and hours as gracefully as you.

I wish for your mother everlasting peace.

With deep sympathy.

Bob

Reply # - August 3, 2013, 01:21 PM

JimC
Posts: 2753

Leah,

I am very sorry to hear of your Mom's passing, but I hope that her lack of pain or distress provides you comfort, as will your memories of the happy times you spent with her. My thoughts are with you and your family.

Namaste,

JimC
Forum moderator

Reply # - August 3, 2013, 01:43 PM

catdander
Posts:

Leah, I'm so very sorry to know of your mother's passing. I am too comforted to know she was peaceful in her going. I wish you peace, love, and good memories.
Namaste,
Janine

Reply # - August 3, 2013, 02:43 PM

marisa93
Posts: 215

Leah,

I am so very sorry to hear that your mom has passed. This is such an awful disease and I hope you take some comfort in the fact that she is no longer suffering. I am so glad you could be there with your mom in her final hours and that you had spoken with her while you were on your way to her. I'm sure she was comforted by that as well.

May you and your family find peace in the days ahead with all of your good memories of her.

Take care,
Lisa

Reply # - August 27, 2013, 02:00 AM

remco
Posts: 14

Leah,

I just read this thread and I'm crying in front of my computer. I'm so sorry to hear this. My mother is going through much the same thing you describe. She's on pulsed tarceva, which showed great promise on the last scan (approx 3 months ago), but now is experiences some of the symptoms you described. So far, I mostly attributed it to side effects (stupid me), but I'm now very worried.

Warmest regards,
Remco

P.S. for anyone interested, here's the thread about my mother: http://cancergrace.org/topic/tarceva-maintenance-therapy-after-chemo#po…

Reply # - August 27, 2013, 06:35 PM

daisy1963
Posts: 41

Remco,
I just reread the thread again myself with tears as well. Unfortunately for the vast majority this disease is relentless in it's progression. We felt we never got a break (or lucky break) or if we did (tarceva) it was short lived.

It was so disheartening to see that the tarceva was working - it knocked out the two brain mets and definitely was helping the liver, only to have what we assume was lepto. However, when I consider(ed) all the ways this could have ended - many being traumatic for patient and family, i consider this a mixed blessing. While my mom's journey was 19 months, I absolutely felt and still feel cheated. She was a very healthy 75 year old with much life ahead with this came at us out of nowhere. And while I say that i am cognizant that many others (way too many) lose this battle at a much younger age - and then I turn my head around to be thankful for what I had.

At the end I considered pulsing, but Mom was already severely compromised from the drugs and the disease and felt it would only postpone the inevitable. If this does in fact end up being your mom's issue, please feel free to reach out to me. I'm so sorry you are going through this. I hope you have good support.
Best to you,
Leah

Reply # - August 28, 2013, 12:58 AM

remco
Posts: 14

Dear Leah,

Thank you for your support. I still have a glimmer of hope that it might be something else, especially since the days on which she doesn't take the tarceva are generally good. But it probably is a fool's hope.

Next week we have a conversation with our doctor, so I'm very interested what his opinion is.

I can totally understand the feelings you have. That feeling that you're being cheated; it's so unfair, it can make me angry, sad and wish that it just didn't happen. But, unfortunately, it did happen.

All the best to you too, Leah.

Remco

Reply # - September 23, 2013, 12:38 PM

niravarav
Posts: 1

Hi Daisy, I wish your mom will surely recover soon. But I think memory loss is a normal syndrome for old people. As far I know about memory loss, people often forget where they kept their mobile phone or car keys.
Like same small students are also having this kind of problems. But I don't think that a man facing memory loss problem can't get recover. There are some tools and technics which help to make your brain sharp.
So I wish your mom again, Get well soon :-)

Thanks!

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