We decided again to delay radiation for further two months because in February 2014 I already had radiation (2Gy single dose up to 50Gy total dose) at the spinal cord (T5 to T10), because of my bone metastasis from my lung cancer, and this time we will not be able to radiate with the whole rate anymore and now my question:
Dear Gracecancer Team, Dear Doctors, I know you cannot tell me what I should do.
I have my good doctors in Austria but I would like to know what the American Drs do in this case,
Only a short discussion?
If we will see another progression on MRI in Jan, 2017 would it be better to start a chemo in the head and stop Tagrisso for some time?
Should I do nothing? Give Tagrisso more time?
or
Should I do radiation (whole brain + whole spinal cord)
It is a difficult situation,
because of the large surface area to radiate (whole brain, whole spinal cord), I will be bad side effect of inflammation of gullet and besides I cannot get the whole rate on the spinal cord, in the places we radiate 3 years ago , so this radiation will not be very effective but can protect my head and spinal cord a little bite for sure.
Can I beg that Dr West or Dr. Pennell or Dr. Weiss answers me? I will be veryyyyyyyyyyyyyy thankful
Saralb from Austria
Reply # - December 11, 2016, 08:21 AM
Reply To: Leptomeningeal carcinomatosis under Gilotrif 2/2
I wrote my story under
http://cancergrace.org/topic/some-questions-lung-cancer
on September 21, 2016, i am F, 46 years old.
Since July 2016, I had severe headaches, nausea, vomiting, and balance difficulties. I could not move me anymore.
MRI and CT of the brain did not show any tumors. I have been on GILOTRIF since Feb, 2014 until that time and had no sign of disease
I have EGFR-EXON 21 mutation.
At 6 Sep 2016 I did a liquorpunctation where a small amount (3) of tumour cells were found in the liquor. MRI of the brain and spinal cord shows an indication (Very little) of leptomeningeal carcinomatosis. Colour of liquor was clear.
2 weeks later liquid biopsy showed a weak T790M mutation and acquired resistance to GILOTRIF.
I started Tagrisso 80 mg and had a meeting for planning for radiation of my brain and spinal cord but we decided in Sep to wait for 2 months to see the result of Tagrisso.
I had only LM on (very small strips) spinal cord and nowhere more in my body
I have been taking Tagrisso since end of September and I must say it helps me for sure.
Two weeks after beginning of Tagrisso I have had no neurological deficits like in September or numbness in my legs and hands any more.
But before, for 30 months under Gilotrif I have had no signs of disease and felt very healthy, now I have still fatigue, bad headaches, neck aches, dizziness, loss of appetite, but on some days I can put on my make-up and go out of the house for shopping, driving for 6-7 hours. But at the moment I think I am not better than 3 months ago.
After 1.5 months on Tagrisso, on 8 Nov, we did another MRI and it showed that I have this time another small strip of leptomeningeal cacinomes on my neck (C7 to T3) which is new.
Maybe it started before I began with Tagrisso in September or before Tagrisso started to work.
Generally, I can say that on 8 Nov there was a 10% progression compared with 9 Sep MRI.
-%-
Reply # - December 11, 2016, 03:21 PM
Hi Saralb,
Hi Saralb,
You've had a terrible time of it, I'm so sorry. I merged your 2 threads so our faculty can see your info. It may be a day or so before one of them is able to comment on questions. They've been a busy lot of late, some have been out of town and others covering for ones gone. For sure everyone will be scrambling to catch up in their respective practices next week. If you don't hear back by the middle of next week bump your thread for a reminder.
For what it's worth if you are feeling better than you did before tagrisso that's a big indicator for staying the course.
All best,
Janine
Reply # - December 12, 2016, 10:46 AM
Hi dear Janine,
Hi dear Janine,
thank you very very much, this is very kind of you. I need really a little discussion from the doctors. The doctors here could not really decide about Chemo against Radiation because they have not a lot of experience with Tagrisso.
I will be waiting...
Kind regards,
Saralb
Reply # - December 12, 2016, 08:30 PM
Hi Saralb
Hi Saralb
Sorry to learn of your LM diagnosis. As I know you are aware this is a very difficult complication but I can tell you are a strong woman who understands what you are up against. LM can be quite variable and I hope and pray yours can be controlled. I wish you the very best.
Bob4Beth
Reply # - December 13, 2016, 08:17 AM
Hi saralb,
Hi saralb,
I too am sorry to hear of your LM diagnosis. Like Bob, I have first-hand knowledge of how difficult a complication this can be.
Here is a link to a couple of posts on treating LM: http://cancergrace.org/lung/tag/leptomeningeal-carcinomatosis/ Unfortunately, for lung cancer patients the results of treatment with radiation have not been especially encouraging.
There was a very small study treating LM patients with Tagrisso, but it's really too early to know whether it is broadly effective in that context, or whether it is feasible or effective to pulse-dose Tagrisso.
JimC
Forum moderator
Reply # - December 28, 2016, 05:52 AM
Hello,
Hello,
are there any news from the doctors to my case? I would appreciate your answer very much.
Thank you
Saralb
Reply # - December 28, 2016, 11:13 AM
Saralb,
Saralb,
You said your symptoms lessened after starting tagrisso for 2 or so months but thought they were worsening prior to your original post. I wonder if your symptoms have continued to worsen in these last 2 weeks.
This will help if we can find an onc to comment this week.
All best,
Janine
Reply # - January 4, 2017, 01:25 PM
Dear Saralb,
Dear Saralb,
I hope that you are getting better. The study posted by Jim tells us that patients were given Tagrisso, 160mg to treat LMD. I think you might need to talk to your onc to increase the dosage. My husband also has LMD. He is currently on pulsed Tarceva and I am looking for next treatment for him. I hope that Tagrisso will be effective for you.
Dear Bob,
Happy New Year! My husband is doing well, although he has hearing loss. We are in the process of getting him hearing aids. It has been almost a year since his LMD diagnosis. He will has his scans next week and we cross our fingers.
Best wishes,
Emily
Reply # - January 4, 2017, 01:51 PM
Hi Emily and Happy New Year
Hi Emily and Happy New Year to you and your family too.
I am so happy to learn that your husband is doing so well. We all know how devastating LMD can be but just knowing that your husband is remaining stable or hopefully improving provides so much hope for others with this diagnosis. My hope is that your husband continues to improve and that Saralb has the same good fortune.
Best Wishes to All,
Bob4Beth
Reply # - January 4, 2017, 10:02 PM
Dear Bob4Beth,
Dear Bob4Beth,
Thank you so much for your nice message. I also hope that my husband's condition will get better. I will keep you posted. I hope that everyone will have a healthy 2017.
Emily