Leptomeningeal disease

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hayerv
Leptomeningeal disease

Hi there,

Need help and advice:

So...2016 my mother was diagnosed with primary Bowel Cancer that was resected with no recurrence to date, then  in 2017 she had a new primary Lung cancer which was resected with adjuvant chemotherapy with again no recurrence as per her last CT scan . At the same time in 2017 she was diagnosed with a lung carcinoid in her other lung which again is stable.

However over the last three months she had deteriorated rapidly. Severe headaches, dizziness, severe tinnitus, vision loss and no hunger - she has dropped around 9kg in weight. The hospital doctors have confirmed its Lepto meningeal disease from mets that are in the lining of the brain but whilst the mri showed Dural thickening at the back of the head and right side, the lumbar puncture confirm it is from the Lung cancer coming which is EGFR L585 mutation..

She has started tagrisso at 80mg - double dose is not available in the UK. it has been 4 week and not much side effects so cant say its working. She has been taking 8mg Dexamthasone twice a day but reduced this in the last week to 4mg. This has resulted in adsence seizures returining and she is now quite anemic too.

We dont want her Tagrisso treatment to stop as the other option is they send give her no treatment and allow nature to take over - but she and our whole family are not ready to give up yet. Oncoligist feel that any further treament/chemo would be too toxic for her. Awaiting MRi to confirm if the treatment is working.

What are the options with LMD - are there any other treatment modalitys for my mother in the UK?

Amy advice is appreciated.

Thanks

Bobby

 

Jim C Forum Mod...
Jim C Forum Moderator's picture
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 

 

hayerv
Leptomeningeal Disease

Thanks Jim.

Unfortunatly there arent any clinical trials near us and currently my mother isnt able to travel.

I have discussed pulsing and also that some of the trials in the US were based on 160mg with some success - however the Oncologist states that 80mg is the maximum dose licensed in the UK.

Would you say Tarceva would be a better option?

Any advice is greatly appreciated.

Thanks

Bobby

 

 

JanineT Forum M...
Hi Bobby, Let me also welcome

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

 

 

 

 

hayerv
Leptomeningeal Disease

Hi Janine,

Thanks for your help - i have meeting with teh Onc on Monday and will ask if there is any possbilty of increasing to 160mg but i doubt it as it not licensed at that dosage in the UK. I was thinking what if we used 160mg every other day - so its the same amount at the end of the week/month but a higher dose  - would you/Dr West have on thoughts on whether this would provide any benefit?

Thanks for sending teh Video clip - i will take a look and dicuss withe the oncologist.

Thanks again.

Regards

Bobby

JanineT Forum M...
The every other day senario

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

hayerv
Leptomeningeal Disease

Thanks Janine.

My mother has a MRI due next week - which will be the deciding factor for what next in her cancer journery.

You advice has been greatfully received so thankyou.

We have discussed testing for further mutations but i think this may be next if the MRI shows further progression. Blood Biopsy are not common in the UK and teh cost is about £3500 per test - so the Onc as advised us to time the test right so we dont get any dicrepancies in the data and can make meaningful next step from it.

She is quite weak and fatigued at the moment and has no hunger - if we could find a way to improve this then further options could arise - however given her current state the Onc in unlikley to look at further treatment if the Tagriss is confirmed as stopped working. 

Any advise on the hunger and fatigue element would be greatly appreciated.

Thanks again

Bobby

JanineT Forum M...
Hi Bobby, I was checking in

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

hayerv
Leptomeningeal Disease

Hi Janine,

Hope you are well.

My mothers MRI was postponed - partly due to the COVID issues we are experiencing in the hospitals in England. Thsi now scheduled for next  month and luckily the ONC is continuing treatment in the meantime.

My mother is on some equivalent of Ensure plus - she is on fortisip and activgain - having about three a day but no solid food now for months. She is also vegetarian and is still being strict with this so soup are what we try but she takes a gulp and says she cant take any more. I have been told to add ice-cream and sugary snacks - which we have - but then i have been told by Naturepaths etc to ensure she stays away from the sugars as they will feed the cancer - what are your thoughts on this?

i have asked about Magace but the ONC wont prescribe as he think the side affects would outweigh its benefit - risk of blood clots as she is bed bound at the moment. Did Magace give your husband any side affects at all?

Thanks for your support.

Bobby

JanineT Forum M...
Hi Bobby, I'm sorry to here

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

hayerv
Leptomeningeal Disease

Hi Janine,

Thanks for your reply.

Thanks for the link to the article and Dr Wests' view.

I think ice cream is on the agenda and i think your right my mum would prefer this over any other diet or medication:-)

I will ask again for a low dose of magace to see if this can help along with a blood thinner to try to reduce the associated risks.

Thanks for your help

Bobby