Mom got results of scans - 1245623

I'm afraid that in the setting of progression in the brain after prior treatment, and also progression outside of the brain, I don't believe there's likely to be any treatment that is likely to be very effective. There are tests that can be done, but if there is significant progression with multiple new lesions in the brain after prior whole brain radiation and potentially leptomeningeal carcinomatosis, I think it would be a very tall order to find anything that is able to dramatically reverse the process even in the brain.

I'm sorry I don't have a good alternative to suggest.

-Dr. West

Ah sleepless, how accurate yournamemust be for ou at the moment.

This is really tough stuff, for your mum most of all. What a tough decision to make - when is enough enough?

It's like there is always another slim liver of hope offered, in this case tarceva. Given that it cn be well tolerated maybe it is worth a shot?

Gail

sleepless, I don't have words to say how sorry I am for the news you are receiving. Obviously your mom gets to make the call to stop treatment. Remember that she doesn't need any test or needles to try tarceva. I wish you're family strength in the days to come and the decisions made. They will be the right ones.
Peace to you all,
Janine

Sleepless,

Just adding a comment here beyond what we discussed privately.

If there isn't much chance of finding a driving mutation with a therapeutic drug in a clinical trial that she could be eligible, knowing the name of the enemy might be more comforting than useful. Many of us with lung cancer yearn to know why we got it and what specificially it is, even if we can't do much about it. Speaking for myself, if I were in your mom's situtation and *if* I had tissue left over from a prior biopsy, I would probably have it tested, but I wouldn't see the point of getting another biopsy procedure done if the tissue I had wasn't sufficient. I bet most people are not as driven to know more about their cancer as I am, though.

I'm am very sorry your mom's test results didn't offer better news. (FYI, I'll try to 'ping' Dr. Shaw with an email of my own to see if she got your email contact attempt.)

Best hopes,

Craig

Sleepless, I have to comment on your comment, "but I feel like I am just giving up". There is a thread and an article that is very difficult to read but in your situation it may be more soothing than hurtful. You decide.

This will take you to a blog Dr. West wrote about the thread and more. It has links to the thread and article. and plenty of leeway for you to back out before it gets to be too much. Though I must say I don't think there is much in it that wouldn't help more than hurt at a time like this. http://cancergrace.org/cancer-treatments/2010/07/30/is-palliative-care-…

You, we all will, stop hope that anti cancer treatment will help give quality of life, but there is more to hope for. I can't imagine what it's like for our loved ones who have lung cancer but I do know that I want to know when it's time to stop anti cancer treatment and focus solely on comfort. It's some of my most worrisome thoughts; how will I know. I won't want to think I was giving up. I went through this with my mom 3 months before D was diagnosed and very happy she was without tubes and meters in her last days.

You will remain in my thoughts,
Janine

PS That song, I had to wiki it to make sure and yes it came out at a particularly difficult time. A year after it came out my boyfriend and a child of a good friend both died. The song became very poignant.

Hi sleepless. . .

I'm so sorry to read of the progression of your Mom's disease. This is so darn hard and unfair!

Laya

I am so very sorry that you did not get better results. Know that there are many good thoughts and prayers and vibes sent to you and your family.

I am really sorry you and your mum are having to deal with all this. How is she feeling?
I believe leptomeningeal disease can be hard to diagnose from a scan, and sometimes difficult to distinguish from other changes in the brain. Hence the lumbar puncture I guess. Obviously this is a very personal choice but I would want the oncologist to make a clear case as to how a lumbar puncture would make a difference in how she treats your mother.
I'm glad you have the Bridge program as a backstop - sounds reassuring and I totally agree about the value of the familiar face.

Thanks for the update. I'm glad to hear the nurse was very helpful. I had not heard of a "bridge" program before; that sounds very appealing for those who prefer not to be prematurely classified into hospice (and the limitations on treatment that too often & somtimes unknowingly go along with that classification).

Best hopes,

Craig

Best of luck to your Mom. . .She (and you) remains in my thoughts. . .

Laya

Thank you so much for the update. CS has a good point about the lumbar puncture and what effects it would have on treatment. I didn't know about he bridge program either except that when studied in trials was very very helpful. So I'm happy to hear that it is being offered. Nurses are wonderful resources.
I hope your mom responds well to tarceva. My thoughts will be for that,
Janine

Hi sleepless,

I just want to send my thoughts and best wishes to your mom, you, and family. I know these are tough times and I wish you all peace and comfort.

Lisa

I think the value of a lumbar puncture is only in whether the results from it would change management, though some people might value "just knowing". As certain spring mentioned, leptomeningeal carcinomatosis is hard to diagnose from a scan, but one additional problem is that the lumbar punctures can give a "false negative" result pretty commonly even when someone really does have leptomeningeal carcinomatosis. Many people wouldn't be inclined to give intrathecal chemotherapy if there is room for doubt about there being leptomeningeal carcinomatosis. But if your mother isn't going to go down that road anyway, it's fair to clarify what would be gained by doing an additional diagnostic test.

I understand the reluctance to stop treatment. My only concern is that there are plenty of people who do treatment well beyond the point where it's helpful, and to the point where it's absolutely harmful, while also keeping everyone from focusing sufficiently on the things that can be improved, such as a patient's symptoms. It's hard to serve two masters by worrying about hitting the cancer again and again or attending to the person and how they're feeling. Just be careful that treatment isn't being done for the sake of everyone but the patient.

-Dr. West

sleepless in jersey - So sorry for what you and your Mom are going through. My father has only recently been diagnosed and being treated, but the when to stop treatment has been bugging me for a while.

He seems to have a phobia of doctors and hospitals....always has had so having to go and having infusions etc is quite traumatic for him.My friends Mother passed away on the 25th May. She had been undergoing chemo until about a week before she passed, when she said she did not want to go for chemo that day as she felt just too weak.She passed about 5 days later. She went through so much treatment and was having weekly chemo and felt so weak and ill after each one.
After seeing this happen, I do not want my father to take that same path. If he wants to go for treatment and really has a chance then I of course support this wholeheartedly, but if he suffers so much that he has only a few good days before each treatment and then his prognosis is only improved by a month or 2 I do not think it would be worth it for him knowing how he feels.
My Dad leaves most of the decisions to me and does not actively participate in his examinations or ask questions of the oncologist, so I end up doing it....he does not understand exactly what is discussed as he has no clue about medical issues as he would never discuss anything medical because of his phobia about hospitals and illness.I have been giving him pep talks to continue treatment, however I do not want him to spend whatever time he has left suffering through treatments which wont make much of a difference time wise. How to know when that point comes is what is worrying me.

Will I know? Will he know? Will the oncologist sort of guess and tell us? My friends Moms oncologist did not seem to know or if he did why was she still having chemo. Your Mom seems like a fighter and seems to know exactly what she wants. All the best, Brigitte

In particular, the "pulsed" schedule of giving Tarceva, which is 4 pills at a time once every 4 days, instead of one pill every day, has been associated with some good results for patients with leptomeningeal carcinomatosis:

http://cancergrace.org/lung/2010/01/31/an-effective-treatment-for-some-…

At the pulsed schedule, the blood levels likely get high enough to reach meaningful levels in the cerebrospinal fluid that bathes the brain and spinal cord.

I am pretty optimistic about this approach for patients with leptomeningeal disease and an EGFR mutation, but less confident it will be helpful for someone who doesn't have an EGFR mutation. Still, it's fair to say that there's relatively little to lose by trying an oral therapy that is FDA approved already for previously treated patients with advanced NSCLC.

Good luck.

-Dr. West

Hi sleepless, How are you? I know you probably don't know the answer to that question but I thought I'd point it out. You know, eat, sleep, hug the nearest loved one...

I think Dr. West's answer is just above your post. Pulsed tarceva.

You are in my thoughts,
Janine

Hi Sleepless, sorry you are going through all this.
I think the point Dr West was making was that your mother could try Tarceva (at a higher dose than normal, every four days), as that sometimes works for patients with leptomeningeal disease, assuming that is indeed the correct diagnosis.
I really hope the lumbar puncture does not cause your mother too much discomfort. I believe it can be painful, and that is one reason why I was querying how useful it is really going to be. She could have the Tarceva anyway, as you discussed with the oncologist
I read Brigitte's post and I agree with her that it's difficult to know when to stop. Your mother's wishes must come first, of course. But I saw my own mother subjected to some hard treatments that did not prolong her life by more than a few weeks, and which meant she ended up dying in hospital, rather than at home which is what she wanted. That's twenty years ago and I still feel bad about it. So that has influenced my own outlook, now that I have cancer too. All best.

Thanks to Janine and certain spring for helping clarify my discussion points. I don't really have other alternatives to offer.

-Dr. West

I am sorry you and your parents are having such a difficult time. If you can gently encourage your mother to try the Tarceva, there's a chance that it might actually do some good. Or perhaps she doesn't want to take any more medication? Good luck on Monday.

Just to let you know I'm keeping you in my thoughts.
Will your mom try tarceva?
Janine

Just FYI, because I don't want you to find out later, it will very likely take longing than just a day to get the script filled, unless you have a specialty pharmacy that has it in stock where you can pick up the drug. Usually it is sent through the mail.
D had his come through the mail until his insurance changed specialty pharms (your regular pharm doesn't carry it) at which time I found they were down the street so I asked about picking it up. I got the idea though that most of their business to the general public was done through the mail.

Keeping you in my thoughts and hopes,
Janine

Yes, I routinely tell my patients that it will often take a week or so to receive the actual drug, since there is often a bit of a process involved with approval, including some back and forth paperwork to ensure that a patient is an appropriate candidate for Tarceva (erlotinib).

It's also worth just noting that the "pulsed" schedule of 600 mg by mouth once every four days uses the same amount of drug as the standard 150 mg daily schedule, so it's potentially possible to do the pulsed schedule even if the prescription is written as the standard dose and schedule.

Good luck.

-Dr. West

I hope I'm not speaking out of turn, Sleepless, but to be honest I think the scheduling is less important than getting your mother to start the Tarceva. If the oncologist originally wrote it up for 100mg, couldn't your mum just begin taking it at that dose? Then the doctor could adjust the dose/timing as he/she thinks best. I know your mother has a lot going on with hospital appointments, but if these were my parents I would be trying to persuade her to start taking it without delay, as it might just do some good.

You are doing brilliantly. I completely understand that it is a delicate situation with your parents. I am just nervous because cancer can move fast.
If it is any consolation, I spent Friday night in the ER with my 81-year-old father, who had a head injury from a fall, trying to persuade him not to discharge himself and stagger out into the night. He turned out to be fine but it did not stop him demanding to be taken home every 4 minutes. So I have trouble practising what I preach!

To sleepless and cs, You're both doing brilliantly. My goodness, you 2 with strong willed parents, who would have guessed. :wink:
I completely understand what you mean by letting your dad have some control; it's a difficult thing for your spouse/best friend to be in such a delicate situation with so little or no control of any of it. You're good to let him have that. And cs is right, give him a nudge to start at least the 100mg. My guess is as a daughter you have ways of nudging that look a lot like your dad making the decisions.

Sleepless,

Just to follow up on what Dr. West said, my wife's onc wrote her prescription for 150 mg/day, even though the plan was for pulsed dosing of 600 mg every four days. In your mom's case, even if she took 400 mg every four days, it would achieve the purpose sought by pulsing - increasing the amount of tarceva that reaches the cerebrospinal fluid. I would think that if your mom's onc wanted to increase the pulsed dosage to 600 mg, he could simply write a new scrip for the standard 150 mg/day dose.

JimC
Forum moderator

Right. None of this is especially well studied. I don't know how critical the dose really is.

-Dr. West

Well done Sleepless - you sound like a true diplomat, turning around a potentially sticky situation. And you got a result!

Sleepless,

Nicely managed, there.

BTW, my Dad has had Transient Global Amnesia a couple of times and it was more acute than what you described. Temporarily, until the middle of the night, he could not make any new memories. Every 60 seconds he'd start again: "I think I'm beginning to get my bearings . . . I'm in the hospital? . . . Another episode of TGA? . . . I live alone now? . . .". (then he'd get very upset that he couldn't recall my Mom's death). . . . I'd explain . . . then a pause . . . Then he'd start again exactly the same. I got good at distracting him from thinking about that upsetting subject, but my voice was getting hoarse from repeating myself. I finally wrote an explanation on a pad of paper an directed his attention to read it. He'd read it from top to bottom, saying "uh huh" multiple time as he read to the bottom . . . Then he'd look up thinking . . . Then look down and see the pad of paper and start reading anew . . . And so on and so on maybe hundreds of times. Worked like a charm until lights-out bedtime in his hospital - then we spoke in the dark until he got sleepy. He started to come out of it maybe 3am.

Best hopes,

Craig in PA

Well done sleepless. My fingers are crossed and my hopes are high.
Don't forget to be proactive with skin moisturizing with a very basic non alcohol non scented lotion or oil.

Good job, Sleepless. . .And, best of luck to your Mom.

Laya

Sleepless, It sounds like she got prepped for radiation treatment. To her hip? D has gone through that twice and both times the one appointment for prep took an hour or more but the treatments never took more than a few minutes. Is that what's happening with your mom? If so she may only need to be at the center for half an hour. Especially if you tell them she needs to get to her own birthday party. :wink: If so I'd call today so they can make arrangements

D also had some burning on the skin and should have taken better care of it the first time around. It wasn't at all a big deal though. aloe sounds good. Make sure you and your dad know what is ok to use during the actual treatment. Some products cause like a shielding affect to the beams of radiation and should not be used just before treatment.

best best

Gottcha.

They may not want to take any chances with a fracture in the hip so decided to move forward with that radiation. I think it makes since.

Right...they sometimes do radiation for pain issues, but they would also do it to prevent a worse problem in a weight-bearing bone at risk for a bad break if treatment isn't done promptly.

-Dr. West

Hi Sleepless, It's really good to hear your mom is trucking right along. I wish I had some insight on the hip issue. I suspect the onc feels the benefits of placing a pin outweighs the risk for surgery. We don't have an ortho surgeon on hand for comment. But that's assuming your mom will agree to any of it.
I'm keeping you in my thoughts, keep us posted,
CD

There's a difference between placing a pin to stabilize things and doing a big hip replacement surgery. I think if placing a pin could prevent a catastrophic hip fracture, which would lead to pain and probably permanent immobility, it's well worth looking into. Tarceva and radiation are not as reliable a way to prevent a fracture if the hip is very structurally compromised.

-Dr. West