bhaskar
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Posts:4
My mother has been diagnosed with Stage 4 NSCLC two years back which progressed recently to LMD.
(T790M)
She is being treated with Tagrix 80mg for LMD. Does the generic work same as Tagrisso and is effective? At what stage do we know LMD is in control and what tests need to be done?
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Reply # - February 22, 2017, 04:35 AM
Hi bhaskar,
Hi bhaskar,
Welcome to GRACE. I'm sorry to hear of your mother's diagnosis, and the progression to leptomeningeal disease.
Rather than being a generic, Tagrix is another brand name for Tagrisso and as such should work similarly. Tagrisso has been shown to have good penetration into the brain/central nervous system, but it's unclear how effective it is against LMD. On the other hand, there isn't a good, well-proven alternative.
Probably the best way to judge the success of the treatment is clinically - have your mother's neurological symptoms improved? The only way to confirm active LMD is by finding cancer cells in the cerebrospinal fluid via a spinal tap. Unfortunately, that is an uncomfortable procedure which often does not provide accurate results, so even a result that is negative does not guarantee the absence of cancer cells.
Good luck with Tagrix; I hope your mother feels better soon.
JimC
Forum moderator
Reply # - March 3, 2017, 02:57 AM
Thanks Jim.
Thanks Jim.
Lately in the last one month her sodium levels have down. She is on fruits, juices, little solid food .
Extreme weakness , fatigue. Anyone can throw some light if low sodium levels is due to the LMD or it could be any other sign.
She is currently on Tramazac 100mg thrice daily, tagrix 80 mg, Decmax 4 mg,
Reply # - March 3, 2017, 09:11 AM
Hi bhaskar,
Hi bhaskar,
I'm very sorry to know your mother has LMD. I don't have anything to add to Jim's post but I did want to suggest your mother try nutritional drinks such as ensure plus to supplement her diet. My husband mostly lived off of these for a couple of years.
I hope she does well on treatment and hope she finds comfort.
All best,
Janine
Reply # - March 3, 2017, 11:07 PM
Sorry to hear that your mom
Sorry to hear that your mom has joined the LMD club. From what I have read and told by my husband's onc that LMD patients are prescribed Tagrisso, 160mg. You might want to talk to her oncologist to increase the dosage. It might improve her symptoms.
Best wishes,
Emily
Reply # - June 29, 2017, 01:24 PM
Update on my mother's LMD (
Update on my mother's LMD ( diagnosed Jan 2017 )
Started on Tagrix 80 mg from Feb 10 , increased to 160 mg mid march.
Pain killers : Tramazac 100 mg 3 times , Decmax 4 mg once daily
Pain levels are under control ( not completely gone but not severe either )
Extreme fatigue ( this has been on and off through all these 4 months , but overall the fatigue has shown an increasing trend . Currently not able to walk or stand up)
Upper half of body in normal control. Hands and upper torso with relatively unaffected.
Loss of bladder and bowel control . This is manageable now.
Mental confusion gradually increasing. This is worrying to me. Since last 3 weeks , she is showing signs of short term memory loss and her speech is a little shaky sometimes. Long term memory is still intact.
Reluctant to eat any solid food - trend is increasing. We are managing with semi - liquid and liquid foods.
Important : 3 monthly MRIs with contrast have shown no change in the original LMD on spine. Now we are not sure to think of it as good or bad news. Doctor hasnt recommended a CT scan for the rest of her body or lungs so we dont know for sure what is the condition in the rest of her body ( if it has spread further or not )
No pnemonitis in lungs so gar.
There have been some viral and bacterial infections on skin but with other drugs these are under control ( not threatening levels of discomfort )
Questions :
How do we know if Tagrix is being effective or not ?
Is it possible that the extreme fatigue and mental confusion is being caused by Tagrix , and not by the LMD itself ?
What checks are recommended for ensuring that there are No critical side effects of Tagrix ?
Regards
Bhaskar
Reply # - June 29, 2017, 09:36 PM
Bhaskar,
Bhaskar,
I'm sorry to hear of these worsening symptoms. Although fatigue could certainly be caused by any anti-cancer treatment, including Tagrix/Tagrisso, the other symptoms are not typical for that treatment. The presence or progression of LMD is not something that appears on scans particularly well. The primary method of determining the efficacy of an LMD treatment is by observing central nervous system symptoms; if they are stable or improving, then the drug is working. On the other hand, cancer progression in another part of the body could cause at least some of these symptoms, so a chest CT might help determine that.
Side effects of a drug are monitored through clinical examinations of the patient, and between exams, by reporting new symptoms to the doctor. If any of those symptoms appear to be related to the treatment, then the appropriate follow-up measures can be initiated.
JimC
Forum moderator
Reply # - July 1, 2017, 03:06 PM
Hi Bhaskar,
Hi Bhaskar,
I want to let you know I've taken down your new thread with the same post because I didn't want any discussion on the subject to get confused or watered down. No worries.
I'm so sorry your mother is progressing, I understand this is a terrible complication. I don't have much to add to Jim's comments. I'd want to know what the oncologist thinks about whether the treatment is working or not, specifically is the treatment adding more symptoms than taking away. It's possible that without better treatment options moving to hospice care may add much comfort for your mother. CT scans can help determine if there is anything that can aid in eliminating some of her discomfort or inabilities.
Again, I'm very sorry for what you and she are going through.
Janine
Reply # - July 1, 2017, 09:17 PM
Hi Bhaskar,
Hi Bhaskar,
To the extent that you may have been asking a somewhat different question in the removed post, I will say that there are two ways to address the progressive symptoms of leptomeningeal carcinomatosis. First is to treat the underlying disease. Unfortunately, as you already know, treatment options for LMD are limited. If the progression cannot be arrested, then as Janine suggested it is good to involve hospice so that the symptoms of that progression can be managed as well as possible, to provide comfort to the patient.
I am sorry that your mother and you and your family are dealing with this, as I know how tough it is to watch a loved one suffer with LMD. I wish that we had better interventions to recommend, but at present they just don't exist.
JimC
Forum moderator