Tarceva and Brain mets - 1258906

watu
Posts:45

My father (EGFR+) is now in the middle of a re-challenge treatment with Tarceva after having Iressa as first line (18 months) and Taxotere as second line (5 cycles). A CT scan is scheduled for the beginning of Sept, but we have been assuming the response to Tarceva was relatively good, considering that only 2 weeks after starting the therapy, back in May, his conditions improved considerably, with no further signs of the dizziness, nausea, aphasia and hearing loss, which until then were very likely caused by his brain mets.

Over the last 4 weeks, we've had to reduce Tarceva to 150mg every other day and now to 100mg every other day to try to improve dad's kidney function, significantly affected by the higher doses, with Creatinine up to 3.14 and Clearance down to 18. Now, 100mg every other day (I believe fairly similar to 50mg per day) seems to be affecting much less the kidney.

Dad's general conditions have been pretty good so far, but since Monday surprisingly he is feeling some confusion in his head, which specifically shows as a difficulty in coordinating his movements. For example, he cannot climb safely the stairs because, although his vision is good, he cannot properly "calculate" where he needs to place his foot. And this applies to a number of other every-day actions.

I know this can be related to his brain mets, but can this "confusion" be the only symptom, with no headaches, no nausea, no dizziness, etc..? I was also surprised of how this has come out all of a sudden during the last 4-5 days. The other "strange" thing of the last weeks was some greenish (bile?) vomiting in the morning every 5-6 days...nothing more really .

Just wondering whether this "confusion" can be easily explained in this setting:

- brain mets progression (after 4 months of Tarceva)?
- no effectiveness of the 50mg per day dose? can this show up so fast?
- leptomeningeal carcinomatosis?
- something related to the medication?Chemo brain from Tarceva?
- anything else to investigate?

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Reply # - August 30, 2013, 11:09 AM

catdander
Posts:

Hi watu, I'm so sorry your dad has started having problems again. Certainly the smaller dose can have an effect on how effective the treatment is but I will ask a doctor comment further.

I hope he is able to regain his coordination/perception soon,
Janine

Reply # - August 30, 2013, 10:30 PM

Dr West
Posts: 4735

It's possible that it could be related to any of the issues you raised, but we don't have enough information to narrow down the possibilities. I'm sorry that this really is a very specific issue that is not something we could really just speculate wildly about. We can provide general information about cancer-related issues that are well within our expertise, but to try to envision the unlikely possibilities of unique situations is really something more appropriate for the doctors involved.

Good luck.

-Dr. West

Reply # - September 2, 2013, 01:29 PM

JimC
Posts: 2753

Hi watu,

As Dr. West said, it's not possible to specify the cause of his symptoms online, but the symptoms (and your concerns) certainly should be reported to his oncologist, who will then be able to decide if further investigation is warranted. If after an examination and discussion of the symptoms his doctor has any suspicion of progressing brain mets, he or she can order a follow up brain MRI or CT to hopefully rule that out.

JimC
Forum moderator

Reply # - September 9, 2013, 03:41 AM

watu
Posts: 45

Last week, we finally carried out the CT scan. Unfortunately, the situation is much worse than expected. The brain lesions are now 4 and significantly larger: 2.9cm, 2.8cm, 1.6cm and 1.5cm. Cerebral edema is also present, and that could explain the sudden neurological symptoms I referred to in my previous post. Liver lesions are stable (4mm), but a number of small nodules have "re-appeared" in the right lung (largest - 9mm).

We will never know if the re-challenge with Tarceva ever worked. This is a significant change over a 4 to 5-month period (last scan was in April) and although dad's physical conditions significantly improved when we started Tarceva in May, I believe the disease has been progressing since then. I don't think it is likely that the dose reduction of the last 4-6 weeks may have caused that enlargement of the brain mets.

Plan:

- Tarceva has been discontinued

- Edema is being treated with dexamethasone and mannitol (after 4 days, we have already noticed some improvement of the neurological symptoms)

- This week we will start WBR - 2000cGy over 5 fractions (1 week). They said this is fairly similar to 3000cGy over 10 fractions, both "biologically" and in terms of effectiveness. Is that a common plan in the US too?

- Soon after the WBR, we will start a new chemo treatment for the nodules in the right lung. The oncologist has proposed Gemcitabine as a single agent (not expected to be too nephrotoxic for dad's kidney).
Dad responded fairly well to Taxotere this year and we really didn't see any disease progression on it. We had to stop the treatment only because it was no longer tolerated after 5 cycles. I wonder whether it makes sense to try again Taxotere.

With this new picture in the brain, I'm afraid prognosis is now much worse. Dad's physical conditions are not bad, but those are really large mets!

Any suggestion on other possible treatments to explore is more than welcome. Any room for other targeted or immuno-therapies in this setting?

Reply # - September 9, 2013, 08:39 AM

JimC
Posts: 2753

watu,

I'm sorry to hear of your father's progression. I'm glad that the medication has quickly improved his symptoms (as it often does).

There is a thread discussing appropriate fractions for WBR, in which Dr. Weiss stated:

"There is no one standard accepted whole brain radiation regimen that we feel is superior to others, but rather many reasonable regimens. The regimen perhaps in most common use in the US gives 30Gy over 10 fractions of 3Gy each. Multiple trials have been done comparing different regimens, trying to do better. A theme of these trial efforts has been that the regimens all appear about the same in the long run. Also, it's worth noting that you can't directly compare total dose across regimens given over different time points. When radiation is given more quickly, a smaller dose is biologically equivalent to a larger dose given over more time.

"I will defer to your radiation oncologist to counsel you specific to your individual case. As a principal, greater fractionation (longer treatment courses with less dose per fraction) are used to minimized long-term side effects. In contrast, when efficacy is needed immediately, treatment with higher doses can result in faster treatment efficacy." - http://cancergrace.org/forums/index.php?topic=10242.msg81687#msg81687

It's certainly a tempting and feasible option to return to a chemo regimen that was effective and was stopped only because of side effects or because the planned number of treatments had been reached. In my wife's case, she responded well to her initial four cycle regimen of carbo/alimta, and returned to alimta as a single agent with some success later.

WBR is often successful at clearing the brain of metastases and keeping it clear for a significant period of time, and I hope that will be the case for your father.

JimC
Forum moderator

Reply # - September 9, 2013, 06:35 PM

Dr West
Posts: 4735

I'm sorry to hear about the progression in his brain.

I don't have anything to add to Jim's comments here. I wish I had additional options to consider. I don't think that immunotherapy is likely to be a very fruitful approach for progressing brain metastases.

Good luck.

-Dr. West

Reply # - September 19, 2013, 01:36 AM

watu
Posts: 45

Thanks JimC for sharing your views and personal experience.

Dr. West, is it common practice to re-treat with a chemo drug that was effective and was stopped only because of side effects or do the oncologists tend to prefer a completely new drug to which the cancer has never been exposed?

Gemcitabine is what we will start next week after completing the WBR therapy (20Gy over 5 fractions). I believe it is not the most powerful drug as a single agent, but it seems that we don't have other options with dad's renal insufficiency.

Reply # - September 19, 2013, 05:40 AM

JimC
Posts: 2753

Hi watu,

Dr. West has said this previously about returning to a treatment:

"Our general mindset has been that any treatment that a cancer has lived through after 4-6 cycles isn't likely to be very helpful, so typical practice has been to favor a new treatment over something that the cancer hasn't been exposed to previously. Still, that's not a hard and fast rule, and I would and do make a distinction between treatment that a cancer progressed on and a treatment we stopped for other reasons, such as completing a fixed amount of cycles. We typically stop first line treatment after 4-6 cycles of a platinum doublet, then move to maintenance therapy or second line and later therapies and then continue them until progression or prohibitive toxicity. There's some inconsistency in the thinking there, perhaps addressed by the fact that doublet chemo is typically harder on someone than the sequential single agent therapies (sometimes including Avastin (bevacizumab)) that follow first line treatment; a significant part of the equation of why we'd stop a given treatment at a certain point is that over time the incremental harmful effects more of the same treatment may exceed the incremental benefit. So we may well reach that point of cumulative side effects becoming problematic for a doublet chemo long before we'd reach that point with a well tolerated single agent.
...
All of that said, it is certainly feasible to consider returning to a first line treatment that was well-tolerated and associated with a good response or at least stable disease." - http://cancergrace.org/forums/index.php?topic=7100.msg50868#msg50868

JimC
Forum moderator

Reply # - September 19, 2013, 09:27 AM

Dr West
Posts: 4735

As Jim's comments and his unearthing of my prior comments indicate, I do think it's reasonable to return to a previously administered agent if it's well tolerated and effective enough that progression hasn't previously been demonstrated while on it.

Good luck.

-Dr. West

Reply # - October 22, 2013, 04:16 AM

watu
Posts: 45

Just a quick update.
Dad completed his WBR therapy 4 weeks ago and he is still struggling to recover himself from the treatment. It's being really challenging.

I understand side effects may be different from one person to another, but in his case I must say it is being really really hard. Extreme fatigue is still the major problem, forcing him to spend most of his time in bed.

He is still being treated with dexamethasone, but things are getting more and more complicated, with significant weight loss, no good appetite, etc.. He has also gone through a respiratory infection that we have treated with antibiotics.

In the meantime, we've had to cancel the planned treatment with gemcitabine, as he is not even able to go to the hospital. We'll wait until he recovers a bit, but I'm afraid we are giving too much time to the lung nodules to progress under no treatment.

Doctors say his general status, his weakness, may also be caused by the disease itself, which is probably progressing. It might be, but it is also true that his decline has started just the week after completing the WBR.

It's difficult to understand what's really happening here.
I'll keep you posted.

Mike

Reply # - October 22, 2013, 10:21 AM

catdander
Posts:

Mike I'm very sorry your dad isn't feeling better. Although you're absolutely right about not really knowing where the fatigue comes from know too that the most devastating fatigue sometimes comes a month after WBR is completed. Keep hope and know we are hear to help. Another thought about chest infections is that when someone is in a reclined position most of the time the lung suffer, even in the healthiest of people. My sister has been a nurse for 45 years and reminds us to "dangle" the legs a bit everyday of anyone who is lying down most of the time. It helps lung function.

Best of luck,
Janine

Reply # - October 22, 2013, 12:52 PM

laya d.
Posts: 714

Mike:

I'm sorry to read that your Dad is having a hard time after his WBR. My thoughts and well-wishes remain with all of you.

Laya

Reply # - October 22, 2013, 01:51 PM

bobradinsky
Posts: 144

Mike

Sorry to read that your Dad is not bouncing back rapidly from WBR. My thoughts and prayers are with you.

Bob

Reply # - October 22, 2013, 08:52 PM

Dr West
Posts: 4735

Mike,

I'll also just add my well wishes to the mix. Unfortunately, it really sounds as if everyone's hands are tied when he's as sick as he is -- no matter what the cause. To me, it sounds at least as likely that this is from progressing cancer as from the WBR. Meanwhile, we shouldn't forget that WBR is done for people who are at risk for a decline and may be the bystander.

In any event, that's all academic. The key question is whether he might improve enough to become a candidate for further treatment.

Good luck.

-Dr. West

Reply # - October 29, 2013, 10:30 AM

watu
Posts: 45

Thanks everybody for your support. Really appreciated.

Last week we activated home hospice. We would have liked to keep postponing it, but we are now aware it can be of great help in the current situation. A doctor and a nurse is visiting us whenever needed. We understand that dad's current physical conditions do not necessarily need to be managed directly by his oncologist.

We have been prescribed daily Epargriseovit (not sure this is the commercial name Pfizer uses in the US) as a vitamin supplement to provide him with some more energy. It contains 2500mcg of vitamin B12, 700mcg of folic acid, 12mg of vitamin B3 and 150mg of vitamin C.
Does anyone have experience with this supplement after WBR treatment?

I was just a bit concerned because sometimes I've read that vitamin supplements have to be used with care in cancer patients as they may "feed" the tumor cells.

Reply # - October 29, 2013, 09:13 PM

Dr West
Posts: 4735

I don't have experience with it but doubt that would have any significant harmful effect. I hope you find hospice helpful.

-Dr. West

Reply # - December 8, 2013, 02:37 PM

watu
Posts: 45

Hi, just wanted to update you on dad's conditions.
Almost 3 months after WBR, he continues to spend most of his time in bed. He cannot walk, actually he can hardly move and still suffers extreme fatigue. So far Decadron has allowed us to keep his neurological conditions under control (last month we tried to reduce the dose to just 1mg per day, but we quickly found his state worsened rapidly, so we went back to 12mg per day).

Yesterday, we were finally able to take him to the hospital for a CT scan and today we've received the report.
We were expecting the situation to be significantly worse, as dad has spent 3 months without getting any therapy against his cancer (neither chemo or EGFR TKI) and his conditions have declined so much that everybody was really thinking of a rapid progression of his disease. Well, according to the CT scan, the situation is incredibly improved.
All his brain mets have disappeared (he had 4 fairly large: 2.9cm, 2.8cm, 1.6cm and 1.5cm), with only one lesion left, although significantly reduced (6mm). No signs of swelling.
Things have also improved in his lung, where he had multiple micro-nodules, and remained stable in the liver.

I still need to discuss this with our oncologist. This is great news and it probably means that the WBR was effective in the brain, whereas the Decadron might (?) have improved or at least controlled the situation in the rest of the body (I'm not really sure whether that's possible).

The big question here is: if there's no disease progression, what's really going on in my dad's body? Was the WBR, as we feared, the real cause of his rapid decline?

Reply # - March 20, 2014, 08:15 AM

watu
Posts: 45

Dear all,

It took me some time to come back to GRACE. Dad passed away peacefully last month, at home and with his entire family around him.
He fought against his lung cancer for 5 long years and was lucky enough to live most of them with good quality of life.

Nobody was really able to explain the rapid neurological decline he experienced after the WBR treatment in September last year. Brain necrosis induced by radiation, leptomeningeal carcinomatosis (one of the brain mets showed nearby meningeal enhancement on the MRI), or maybe just the disease itself that started to progress significantly faster than before. His clinical conditions became so poor that we could only treat him with palliative care since then.

I would like to thank you all for your precious support during these years. GRACE helped us so much to improve our knowledge and awareness of this terrible disease, and this allowed us to take a more active role in the decision making with our oncologists. We were happy to share with the community the ups and downs we experienced during the evolution of the disease, but more importantly it was great to find strength and hope from a number of positive stories published on this site.

I’ll try to remain active on GRACE. Hopefully dad’s own experience with lung cancer will help other people to find their way against the disease, aiming at a better control of it or, why not, at a possible cure.

Take care,
Mike

Reply # - March 20, 2014, 08:32 AM

JimC
Posts: 2753

Hi Mike,

I am so sorry to hear of your Dad's passing. We all know how cruel this disease can be, and how quickly it can progress. I am heartened to hear that during most of your Dad's five-year battle he enjoyed a good quality of life, and that you were able to share that time with him.

I too found a great deal of support here on GRACE during my wife's illness and after her passing (in a most unexpected way). I and everyone else who contributes to make this site what it is appreciate your comments. I'm glad that we were able to help you.

Best wishes for peace and comfort in the days ahead.

JimC
Forum moderator

Reply # - March 20, 2014, 09:24 AM

sherrys
Posts: 212

Mike, Please accept my condolences. I can't imagine how hard this must have been for you and your family. I'm sure your dad was a peace knowing how much he was loved.

Reply # - March 20, 2014, 08:45 PM

Dr West
Posts: 4735

Mike,

Please accept my heartfelt condolences, as well as my thanks for your coming back with such kind sentiments and generous spirit of using your experience to help others through such a difficult time. We're fortunate to have you enriching this community.

-Dr. West

Reply # - March 20, 2014, 08:56 PM

bobradinsky
Posts: 144

Dear Mike

Please accept my sincere condolences on the passing of your father. I am happy for you and your family that he did have a number of good years while the cancer was under control. I am sorry that he never quite recovered after the WBR and I hope he did not suffer greatly during his last months under hospice care. My thoughts and prayers are with you and your family. Bob

Reply # - March 25, 2014, 05:48 PM

cards7up
Posts: 635

So very sorry to hear of your Dad's passing. He was a champion, fighting for 5 years and most with good quality of life. He's an inspiration to all. My condolences to you and your family at this trying time.
Take care, Judy

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