My wife has been diagnosed Sept/2013 with primary lung, NSCLC EGFR Positive Exon 21 metasized to liver, spine, pelvic and brain with signs of Lepto.
Lynda underwent WBRT for 19 lesions in Sept. She was on Iressa for a few months and now since March 7 , 1500MG Tarceva every 4 days.
She is handling well however not sure if its really helping. She suffers daily headaches that Tylenol is still effective. Taste buds and appetite totally hindered however Ensure and smoothies are keeping her going. Considering the diagnosis she is doing very well but far from whom she was 12 months ago.
Our ONC called this 4 day very high dose "Lyndas' regiment " as he knows of no documented publication of a similar dose treatment. He claims she is a first. Great but not very comforting.
Is there other methods to get thru the BBB? Is CBD ingested via vaporizer, oil or edible worth adding? I know that research has shown some benefit such as testing published by California Pacific Medical Center Research Institute. How about adding Alimta to high dose? In short what would you all suggest that we do for Lynda to keep her with us as long as we possibly can.
Thanks
Louis
Reply # - April 16, 2014, 05:13 AM
Reply To: Pulsed Tarceva
Hello Louis,
Welcome to GRACE. Various regimens of pulsed Tarceva have been used, and though I doubt that your wife's regimen is absolutely unique, these dosing schedules have not been well-studied. One question is whether the indication of lepto arises solely from imaging. If so, an LMC diagnosis from scans is often an overcall. The symptoms you describe (headaches relieved by Tylenol, lack of appetite) are not consistent with LMC; usually there would be a wider range of neurological deficits.
Although it is possible to add a chemo drug such as Alimta, if her scans and symptoms are stable, there is little reason to do so. Most oncologists do not want to use up all the treatment agents, preferring to use them sequentially if they are proving effective.
As far as CBD, there is insufficient evidence of its anti-tumor effect. As Dr. West has noted:
"there’s an enormous gulf between lab-based work and actual findings that improve outcomes in human patients. There are probably around 1000 things reported to slow or shrink cancer in test tubes or animal models for every treatment that actually helps human patients with cancer.
I’m not saying it’s impossible that cannibis is significantly beneficial in fighting cancer. I’m just saying that the evidence offered is so weak that it would need to be far stronger to graduate to becoming “speculative”. I don’t consider the kind of evidence available on this hypothesis to be in the same ballpark, and probably not in the same atmosphere, as clinically meaningful, credible evidence of a significant beneficial effect in human cancer patients." - http://cancergrace.org/topic/cannabis-oil-anyone-know-anything#post-126…
[continued in the following post]
Reply # - April 16, 2014, 05:15 AM
Reply To: Pulsed Tarceva
[continued from previous post]
The National Cancer Institute has a page discussing research into cannabis as a treatment for cancer and its symptoms (and the side effects of chemo): http://www.cancer.gov/cancertopics/pdq/cam/cannabis/healthprofessional/…
You may also be interested in this study: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3770515/
Best wishes for a continued good response to Tarceva.
JimC
Forum moderator
Reply # - April 16, 2014, 05:33 AM
Reply To: Pulsed Tarceva
Txs Jim.
What prompted Lynda's discovery of illness was what was initially diagnosed a 6th nerve palsy. What prompted the doctor to suggest an brain scan was when months later she felt a numbness in one foot. Our life changed the next day when the doctor reading and looking at the scan turned pale white and immediately made arrangements to see a neurosurgeon.
Lynda today is living with the remaining 6 th nerve palsey, numbness now from buttock to foot on one leg, seemingly developing incontinence and needs to urinate virtually every hour , day and night, does have balance problems and then the headache and appetite and taste bud issues. Other than that she is fine!
Lynda is strong and has impressed doctors by her resilience. 1500MG every four days seems like a lot of drug and she shows very little in form of rash [ upper back but little ] and no diarrhea . I read that some people think that developing acne or rash is good as it shows drug is working. How true is that?
I am concerned that many clinical trials including the new targeted TKI like Clovis 1686 and AZD 9291 are excluding brain mets and I assume even worse is signs of Lepto.
As Lynda's caregiver I feel that I am at the end of the road of what I could expect from my local hospital. I am starting to feel helpless and it breaks my heart.
Reply # - April 16, 2014, 06:07 AM
Reply To: Pulsed Tarceva
Louis,
Although there is some suggestion that those who develop severe rash from Tarceva tend to be especially sensitive to it and respond well, it is NOT true that a patient will not respond well if the rash is minimal.
As far as trial restrictions, many trials exclude uncontrolled brain mets, so if they have responded to WBRT and/or will respond to the pulsed Tarceva, perhaps she could be eligible. Also, is there any suggestion that the leg numbness and incontinence could be related to the bone mets in her spine? If so, focal radiation might be helpful.
JimC
Forum moderator
Reply # - April 16, 2014, 06:23 AM
Reply To: Pulsed Tarceva
Txs Jim... I forgot to say that she does have a lesion in PONS. There was no indication that lesion on spine squeezed any nerves... Onc suggested a second WBRT and Radio Onc refused hence starting the pulsed treatment.
Lluis
Reply # - April 16, 2014, 07:35 PM
Reply To: Pulsed Tarceva
I'm so sorry. This is a very difficult situation, I'm afraid, and I don't think there are good answers with leptomeningeal carcinomatosis. You're right that trials are extremely likely to exclude patients with leptomeningeal carcinomatosis from clinical trials.
I agree with Jim's explanation that having a minimal rash doesn't mean that Tarceva (erlotinib) isn't doing what it can do; there is no evidence that raising the dose beyond the standard one improves outcomes.
I also have absolutely no faith that cannabis in any form is an effective anti-cancer therapy. I have no doubt that there is some institution that publicizes something called research that is supportive of the concept that cannabis is an anti-cancer therapy, but studies coming out of California Pacific Medical Center Research Institute are not what I would consider to be the highest value or credibility.
I wish I could tell you that I have a good suggestion, but I'm afraid that it's very likely there just aren't any.
-Dr. West
Reply # - April 16, 2014, 08:24 PM
Reply To: Pulsed Tarceva
Louis
I am very sorry to hear of your wife's diagnosis of LMC. You may be correct that pulse dosing 1500 mg twice weekly is the highest recorded. My wife dosed 900 mg twice weekly and that was the highest I had heard of up to now. I would like to warn you that no insurance company I am aware of will approve and pay for the use of more than 30 150 mg per month. My carrier was charging me close to $200 per tablet in excess of 30 per month. It can get very expensive very fast. I would encourage you to check this out if you have not already. Genentech, the maker of Tarceva, has a foundation that will give you the extra medication you need (it may be subject to limits) but there is means testing which in 2013 was $100,000 adjusted gross income. I can help you with this if you want. Best of luck to both of you. Bob
Reply # - April 17, 2014, 10:06 AM
Reply To: Pulsed Tarceva
Thank you Jim and Dr. West. Thanks Bob and sad to learn about your wife Beth. The prognosis that Beth endured seems strikingly similar to Lynda's though radiation was for brain and not yet other areas of her body.
Hope you are coping. It cannot be easy she must certainly be very much with you in spirit.
We really did not expect I would be widowed and I cannot bring myself to think of life without Lynda. We are both 57 years of age. Never in a million years would we have expected this as Lynda is a non smoker and always very healthy.
On a positive note I read that Valerie Harpe's disease reported stable yesterday. I think that she is dealing with a similar situation as Beth and Lynda and so many more people.
Jim / Dr.West:
is there evidence that shows penetration thru the BBB by saturating the body with such high dose? Would adding Alimta do more? How about interthical?
What would you think of undergoing another WBRT at lower dose?
Thanks a bunch...
Reply # - April 17, 2014, 12:09 PM
Reply To: Pulsed Tarceva
Hi Louis,
The main purpose for the high dose is to increase the concentration of the drug crossing the blood brain barrier. So if the concentration in the CNS from a normal dose is only 20%, increasing the dose fivefold hopefully will get enough of the drug across the barrier. Normally this is done with targeted therapies rather than chemo, since those drugs tend to be better tolerated at high dosages.
Intrathecal chemo has not been especially successful in treating lung cancer in the CNS.
JimC
Forum moderator
Reply # - April 17, 2014, 06:11 PM
Reply To: Pulsed Tarceva
I really don't have anything else to add to Jim's summary. I'm sorry to say that everything you've been considering has been looked at, and none has been shown to be effective. I don't know the details of Valerie Harper's situation, but I must confess that it is vanishingly unusual to have a good response in LMC, but also pretty much anything is possible in cancer.
-Dr. West
Reply # - April 17, 2014, 09:57 PM
Reply To: Pulsed Tarceva
Louis
I know exactly how you feel. Beth was 64 when she was diagnosed, had never smoked, took excellent care of herself, and up until she became ill was seemingly healthier than me. I hope your wife is one of the lucky ones. LMC can break you heart into a hundred pieces. Be strong for her. Bob