Leptomeningeal disease

Hi Bobby,

Welcome to GRACE.  I am so sorry to hear of your mother's diagnosis of leptomeningeal disease, as I have first-hand experience with just how heartbreaking the symptoms can be. I have no insight into what options may be available in the UK, but you might want to search clinicaltrials.gov to see if there are any current clinical trials available nearby.

Another option you may want to discuss with her doctor is pulsing the Tagrisso dose. In my wife's case, she took a quadruple dose of Tarceva every four days. It caused no problems with insurance, as she was taking the same total amount each month. The theory is that taking a larger dose increases the concentration of the drug crossing the blood brain barrier, hopefully reaching a level which is effective. Some patients have received benefit from this approach. 

My thoughts are with you and your family at this difficult time. 

Jim C Forum Moderator 

Hi Bobby,

Let me also welcome you to Grace.  I'm so sorry your mother is in this terribly difficult situation.  I asked Dr. West the question about pulsed tagrisso this past July.  He answered, "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."

A couple of weeks ago Grace presented a targeted therapies patient forum.  In this clip at a little past 36 minute mark Dr. Zosia Piotrowska from Mass General mentions that there are a few reported cases where people who acquired resistance to tagrisso and developed a new mutation, C797S benefitted from tarceva.  It would be worth talking to your mother's onc about the possibility of trying tarceva.  Unfortunately there's little to offer in the way of managing lepto beyond higher dosing targrisso or pulsing tarceva.   At 24 minute mark she talks about liquid (blood) biopsy that may be available for testing for c797s if that is needed to try tarceva. 

I wish there was more to offer. 

Best to you and yours,

Janine

The every other day senario is what I asked him about when he gave the answer I quoted above.  The reasoning for "pulsed" dose is to give so much at one time some gets to the brain but tagrisso already gets to the brain.  The extra dose that he did mention of 160 every day is to up the dose because sometimes more is better.  So no he wouldn't say 160 every other day would be something he would do.  Too the 160 is double and can cause some nasty side effects that can be worse than any benefit.  It would need to be on an individual basis depending on the person's past on the drug and the person's health now.  At any rate it's not something that is done with any regularity and there is no data on the subject.

What about checking for the c797s mutation.  It can be checked with at least fairly good accuracy in a simple blood draw.  If she has that that would be the reason tagrisso isn't working and more would just cause more side effects.  But if tarceva were available she could try that in the pulsed dose that Jim mentioned with at least some knowledge of reported cases.  That's not as good as having solid data but there aren't other options, I'm so so sorry to say. 

Lepto has just become a growing problem, probably because people are living longer which gives the cancer more oportunity to hide in places we can't get to.  There is a huge need to make some progress here.  Cancer is such a horrible disease and lepto in lung cancer is one of the worst scenarios. 

I'm keeping you and your mother in my thoughts.

Janine

Hi Bobby,

I was checking in to see how your mother's mri went.  I see that I didn't reply to your question about appetite and fatigue, I'm sorry I thought I had.  By several pathways cancer causes a loss of appetite (anorexia cachexia) and unfortunately even if you could get her to eat it may not lead to nutrient uptake.  Lepto causes many significant problems and could be the cause of both appetite loss and fatigue.

However, it could be because your mom is sick and tired.  In this case nutrition would be beneficial.  In my experieince with my husband high calorie Ensure Plus type drink was sometimes the only thing he would consume.  I added ginger and bacon or bacon grease to almost everything I cooked.  No kidding, if she eats bacon, it could add flavor that most meat eaters can't resist.  Add calories whenever possible, think ice cream and buttery potatoes.  The smallest dose of generic version Magace helped tremendously too.  Magace as I remember is very expensive but there are generic versions were affordabe for me.  

Keeping you and her in my thoughts.

Janine

Hi Bobby,

I'm sorry to here that there's been so little movement but the horribly unfortunate truth is that there's so little that can be done.  It's just as possible that staying home and not having to go to appointments and taking tests consumes a ton of energy for someone very weak. 

The article, Does Sugar Feed Cancer is good.  There's really no proof that sugar will cause someone's cancer to grow quicker.  

and here "...Dr. West clearly states the consistently-held view of the GRACE faculty that:

"There may well be useful conclusions to draw from Dr. Seyfried’s work, but whatever that research offers, it isn’t strong clinical data on human cancer patients that shows better outcomes in patients who follow one diet over another. If these hypotheses are correct, they will still remain hypotheses until they are actually tested in clinical trials. Until then, both sides are operating more on faith-based perspectives that we can justify with scant, poor evidence to justify our own predispositions. I don’t think that the argument can or should be made that “sugar is terrific”, but rather that at this time, overall, there isn’t significant evidence that diet has a very significant effect on clinical outcomes in patients with known cancers. Absence of proof isn’t proof of absence, but I think it’s wrong for either side to take a dogmatic view here." ".

With no real proof one way or the other, I would go with what feels good and icecream always feels good, butter and cream cheese in your mashed potatoes feels good, not going out when all you want is to stay still is good.  Ask and I bet your mom would agree which may be what is most important right now.

My husband had good results with magace though there are significant side effects that your mom's doctor has warned agaisnt for her individual situation.  In your mother's situation it sounds like magace could do more harm than good.  Magace doesn't work for everyone and depends in part on what mechanisms are in action that has taken her appetite away.  Cancer releases hormones that trigger loss of appetite.  It's very possible she's not missing out on anything here. 

Stay safe from covid, buy some icecream and anything that you or she thinks she might like to eat.  It could be something she's never cared for so the sky's the limit.

Janine

Hello Bobby and Janine,

Bobby, I am sorry to hear what you have been going through and I was trying to read your discussions. I also need a discussion on this matter. My mom (56) was in a good shape 4 months ago when they have found out that there was only one tumour in the lungs, but it was still able to have surgery -which they always say this is a luck for a patient- and one lung was removed(the unfortunate thing is that the lung was next to main veins in the lung). I must say that we have lost a lot of time because of our ignorancy, the mistreatment od the doctors and bureaucracy in governmental treatment. So at this point she was supposed to be phase 2. What I am wondering how she can be in phase 4, when it was stated that her body was clear from the PET and tomography results in 3 months and directly had Leptomeningeal metastasis. 1 and a half months ago when we learned that she was diagnosed with Leptomeningeal metastasis her body was clear from any tumour known. Her previous surgeon stated that there are some cases that this kind of sneaky lesions hide themselves so they couldn`t found out and I am having hard time to believe this is just some unluckiness as she also said. What I am asking if it is normal to find ourselves in such a late state of cancer immediately when it wasn`t spread anywhere else? Also after the side effects of Tagrisso our medical oncologist has sent us to a radiology oncologist to have whole brain radiotheraphy, and as we all may know it has many sideffects and my mom is afraid to take her because she is afraid of lose in memory and neurological problems etc..

I am just trying not to skip anything that might be useful for us, because cancer itself is very complex thing to deal with!

Thank you in advance for any kind of tips.

Hi Ruken,  Before we have a conversation about lepto I want to make sure that's right.   Leptomeningeal metastases are cancer cells that are in the lining of the brain and spinal cord that can attach and become tumors or just circulate in the spinal fluid.  They are different than metastases in the brain and are treated differently.

Cancer can do anything and it does.  Often faculty say that each cancer diagnosis is a separate disease all because cancer does anything.  So yes, unfortunately not having anything show up on a scan of any kind is far from a guarantee that there is no cancer circulating in the body that can connect someplace (brain is a typical place for lung cancer to develop mets).  Unfortunately, that is the case in around half of those with resected nsclc.  It's a horrible thing. 

So is it lepto or brain mets? 

At the final meetings we had with our doctor they said it is lepto, until very recently I didn`t know they were also separate things.