Dear All,
My mom was diagnosed with a stage IV NSCLC with a LMD and hydrocephalus. In the begining a neuro surgeon installed a v shunt to create a bypass of brain liquid to the stomach and she had undergone 3D and SRT to treat a lesion at the back of her brain. After that she was given Tarceva before moving to Tagrisso despite her not having T790M mutation.
Recently her condition deteoriated (unable to walk, control bladder, issues with talking and hearing) and it is very clear that her CNS had been affected by LMD and upon doing a spine MRI, we found out that it has entered the spine, (My guess is even back then it has entered the spine since my mom had difficulty walking for the last 2 years before even we did the MRI scan). Her MRI Scan says "There are hyper intense lesion at posterior intervertebral disc L4-5 and L5-S1 suspected annular tear. There is enhancement of durameter with skip lesion at level cervical, thoracalm lunar and conus medulla."
In the begining we have 4 options:
- Omaya Reservoir to pave a way for Chemotherapy to the spine, but due to the shunt to eradicate brain liquid, she has too litle brain liquid for us to proceed with Omaya installation and I heard this method's efficacy is not great compared to the risk associated with this procedure
- Immunotheraphy which is no longer possible since she is an EGFR positive patient in the past and I heard Immunotheraphy is not going to be efficient
- Radiation to the entire spine which we are going to do since we are left with this option now
- Double Dose Tagrisso (I have been hearing a lot of positive results from this treatment)
Our main Oncologist told us that there is nothing much we can do now unless we want to do radiation (will be done tomorrow) + double Tagrisso. How dangerous is Double dose Tagrisso? Can we start the double dose Tagrisso while she is doing her radiation or should we wait until radiotheraphy is done? Is there any other treaments that we can consider? I felt really helpless now, but I refuse to just wait until the day she is called back to heaven. If there is any kind soul who has any information, please help to enlighten me.
Thank you and cheers.
Dave
Reply # - July 7, 2020, 02:34 AM
Hi Dave, I'm very sorry to
Hi Dave,
I'm very sorry to hear about your mom's diagnosis and symptoms. I don't know of any data collected on concurrent tagrisso and radiation to the spine for leptomeningeal metastases. There is some data that suggests WBR and egfr tki is safe.
Unfortunately, there isn't much in the way of good treatment for lepto except that of pulsed dosed tarceva (double dose every other day). I don't think this has been studied but has become the treatment of choice for those with egfr mutation and lepto. There has been good efficacy for many who have used this method starting back when tarceva was the only tki available in the US. Today some oncologists are doubling the dose of tagrisso from 80 mg to 160mg per day.
I'm so sorry you are going through this with your mom. It's a scary thought to know that there will come the day when the best treatment is that of comfort care for the person you love so much.
I hope your mom does very well.
All the best,
Janine
I joined GRACE as a caregiver for my husband who had a Pancoast tumor, NSCLC stage III in 2009. He had curative chemo/rads then it was believed he had a recurrence in the spine/oligometastasis that was radiated. He's 10 years out from treatment.
Reply # - July 7, 2020, 01:52 PM
Did your mom begin to
Did your mom begin to deteriorate just after she changed from tarceva to tagrisso? If so could it be that her LMD is sensitive to tarceva but not tagrisso? This is just a thought and not my opinion that she should move back to tarceva. However, if her decline follows closely to the change in treatment it's worth having that conversation with the.
The newest data of tagrisso v tarceva show that if tagrisso is started as first line treatment it has better overall survival rates than starting with tarceva. However, if you progress on tarceva tagrisso only works if T790 develops.
BTW, I deleted your post on the other thread since it's the same. It works better here because it will make it easier for others to find a discussion about LMD.
Be safe,
Janine
I joined GRACE as a caregiver for my husband who had a Pancoast tumor, NSCLC stage III in 2009. He had curative chemo/rads then it was believed he had a recurrence in the spine/oligometastasis that was radiated. He's 10 years out from treatment.
Reply # - July 7, 2020, 02:42 PM
I just received a note from
I just received a note from Dr. West responding to a question about pulsed tagrisso. To the question, are oncologists pulsing tagrisso he states, "No. I'm sure someone has done it, but Tagrisso is effective in the brain, so we mostly would consider increasing dose from 80 to 160 mg daily, but pulsed dosing is not an approach that has been used and reported with any meaningful frequency."
Dave, I edited my prior statements from pulsed to double to correspond.
Thanks,
Janine
I joined GRACE as a caregiver for my husband who had a Pancoast tumor, NSCLC stage III in 2009. He had curative chemo/rads then it was believed he had a recurrence in the spine/oligometastasis that was radiated. He's 10 years out from treatment.
In reply to I just received a note from by JanineT GRACE …
Reply # - July 7, 2020, 11:29 PM
@Janine, her condition
@Janine, her condition deteoriates recently after 2 years of consuming Tagirsso. Her main lung cancer is stable and even the lesion in the brain is stable except for this lepto moving to the spine. She has no T970M mutation, but we decided to move to Tagrisso after our oncologist recommended so. For the double dose Tagrisso, do we do it every two days or we do it in a daily basis?
Reply # - July 7, 2020, 05:28 PM
Leptomeningeal disease
GRACE Community Outreach Team
Hi Dave,
It seems as though you and Janine have covered most of the pertinent issues. I will add that when my late wife Liz was faced with pulsed Tarceva in a similar situation, the side effects did not seem any worse than she experienced with the standard 150 mg/day dosage. I had been worried that getting such a large dose all at once (hers was 600 mg every four days) would result in horrendous toxicity, but at least for her that was not true.
It's hard to say whether she derived much benefit from the pulsed regimen, because her lung cancer was progressing in many other locations, but some patients do benefit from it, and I hope your mom is such a patient.
That being said, I think it's important to remember that treatment for lung cancer has two goals: to increase the length of life and also to improve or maintain quality of life. As Liz's oncologist (who has been a GRACE faculty member) told us at our first meeting with him, there can come a time when the focus shifts from the first goal to the second. Lung cancer treatments are not without negative effects, and at a certain point they can do more harm than good.
I am sorry that you, your mom and your family are facing this very difficult situation. My thoughts are with you for strength, peace and comfort.
Jim C Forum Moderator
In reply to Leptomeningeal disease by Jim C GRACE Co…
Reply # - July 7, 2020, 11:29 PM
Dear Jim and Janine
Thank you very much for your encouraging words and advice.
My mom actually has negative T970M mutation, however our oncologist suggested us to move to Tagrisso two years ago saying that Tagrisso is proven to be able to penetrate the brain. She was doing very well but early this year she suffered from a blackout which we thought to be a on serious thing as she recovered from that blackout within a week. However ever since then, she prefer to mostly stay on the bed because she was scared that it will happen again. However, she suffered from another blackout towards the end of March. And since then her condition has deteoriated.
She is mostly stay on the bed and she started to have issue controlling her bladder (She has a v shunt in the brain and we thought it was caused by the v shunt issue as this happened before). However she started to eat very little and she started to have issue with her hearing. We also noticed her personality changes significantly and it took a lot of efforts to bring her to the hospital for MRI scan which found Lepto in her spine. Today she will start her first of 10 sessions of full spine radiation (as we can no longer do omaya). One oncologist told us that this is the beginining of the death of the nervous system. However my siblings and my dad refuse to give up (or maybe we are living in denial). She was diagnosed with Lepto in 2016 and we have seen how the will to fight may help to keep the disease at the bay. So we are looking for a next step after the radiation which is double dose Tagrisso based on what I have read. But thank you for sharing your experience Jim, that is comforting we are pretty sure we will go ahead with double dose Tagrisso. I read that combining Tagrisso with Avastin will help?
@Janine, her condition deteoriates recently after 2 years of consuming Tagirsso. Her main lung cancer is stable and even the lesion in the brain is stable except for this lepto moving to the spine. She has no T970M mutation, but we decided to move to Tagrisso after our oncologist recommended so. For the double dose Tagrisso, do we do it every two days or we do it in a daily basis?
We just hope that when the time comes for angels to bring our mom back to home, we know we have done our best and it is the best for her to be in a better home :(
Reply # - July 9, 2020, 01:57 PM
Hi Dave, What Dr. West said
Hi Dave,
What Dr. West said was tagrisso dose is sometimes doubled on the same daily schedule to be more effective on the LMD. This is different from what Jim and I talked about when using pulsed tarceva (same weekly dose amount just given all at once each week or so).
This is just a guess but I suppose your mom changed to tagrisso before tarceva stopped working so tagrisso was able to act as if she hadn't taken the tarceva. In any case your mom seems to still be responding to tagrisso if the only progression is in the spinal fluid.
I hope she is fairing well with the radiation treatments and can relieve the LMD symptoms. Keep us posted.
All the best,
Janine
I joined GRACE as a caregiver for my husband who had a Pancoast tumor, NSCLC stage III in 2009. He had curative chemo/rads then it was believed he had a recurrence in the spine/oligometastasis that was radiated. He's 10 years out from treatment.
In reply to Hi Dave, What Dr. West said by JanineT GRACE …
Reply # - July 12, 2020, 10:46 PM
HI Janine,Thank you very much
HI Janine,
Thank you very much for your reply and thank you for helping me to check with Dr West. Sorry for the late reply but I hope you have had a great weekend.
Yes she changed to tagrisso before tarceva stopped working. So far the only progression is in the spial fluid, she is now on her 4th full spinal radiation. She will end her radiation treatment early next week and we will go ahead with double dose tagrisso. Thank you very much Janie, Dr West, hopefully God will bless you for your kind help. I will keep you guys updated.
Thank you so much.
Dave
Reply # - July 13, 2020, 03:47 PM
Thanks Dave. Sending many
Thanks Dave. Sending many good hopes to you and your mom.
I joined GRACE as a caregiver for my husband who had a Pancoast tumor, NSCLC stage III in 2009. He had curative chemo/rads then it was believed he had a recurrence in the spine/oligometastasis that was radiated. He's 10 years out from treatment.
Reply # - September 1, 2020, 11:27 PM
Hi Janine and Jim,My mom did
Hi Janine and Jim,
My mom did a lumbar spine radiation almost 2 months ago and we gave her double dose tagrisso. In the beginning she had issue with her blood counts which the doctor claimed to be fine as lumbar spine radiation tends to affect blood counts. While doing the radiation she was given dexa and various nutritions via IV. She was in high energy while in hospital. However, after we brought her back she started to sleep more and eat less. We started to give her double dose tagrisso in the last 3 weeks but it had been a roller coaster. A week before last week she stopped eating and drinking and we gave her IV at home and reduce the dose to a single dose.
My thinking is, this is caused by her not drinking enough water (I am not a doctor but I noticed if she drinks less, she loss the appetite, even we had to do the IV through the legs since the nurse cannot do it through the hand as no blood flew flowed through the needed). After we gave her IV and went to single dose her condition started to get better again. After which we started to give her double dose tagrisso again. A blood test early last week showed her blood count is slightly lower (red cell, white cell). And over the last weekend she started to eat less and drink less again.
My question is, how do I know if it is Double dose causing this or if this is an issue with her blood counts / lack of water in her system?
Thank you and cheers.
David
Reply # - September 2, 2020, 11:55 AM
Hi David, It sounds like your
Hi David,
It sounds like your mom is really struggling, I'm so sorry. The best way to find out if one or the other is causing her decline is to add one at a time and wait to see how she feels. If she feels better with IV hydration then why not give it to her? I know this is difficult to think about, but it could be that the cancer itself is the reason her body has stopped eating or drinking. The most important question is what does her oncologist think is the best course of action for your mom. I know this question sounds flippant but our faculty have said it's a good way to get directly at what you're looking for and it's, "What would you do if your mom was in the same situation as my mom?". I imagine you and your siblings really want your mom to be as ok as possible and hospice care should be seriously considered. I'm not saying this is the direction she needs and her oncologist may need direct questioning about when the right time for hospice is.
I hope your mom feels better soon.
Janine
I joined GRACE as a caregiver for my husband who had a Pancoast tumor, NSCLC stage III in 2009. He had curative chemo/rads then it was believed he had a recurrence in the spine/oligometastasis that was radiated. He's 10 years out from treatment.
In reply to Hi David, It sounds like your by JanineT GRACE …
Reply # - September 7, 2020, 11:00 PM
Hi Janine, No wory, but thank
Hi Janine,
No wory, but thank you so much for taking the time to read my post and answer my post, that means a lot to me. The doctor suggests that we stop double dose since it is a systemic treatment and asks us to find mutation for immunotheraphy. However, as far as I know Immunotheraphy does not work for NSCLC with EGFR mutation, not too sure if immunotheraphy is even on the table right now. The other option is to give her chemo (Alimta) but he is doubtful that my mom will be able to handle the effect of chemotheraphy.
We did a blood test on Friday and found that her HB is only 8 which is low. Our oncologist is suggesting us to do another test on Tuesday to see if she will need a blood trans. Right now I am not too sure if this is an effect from spine radiation or double dose. But we will follow your suggestion to test one at a time. We will also consider hospice for her.
Thank you so much Janine for your help hope God will bless you with all his power for your kindness.
Cheers.
David