leptomeningeal carcinomatosis - best treatment options available? - 1272237

Oh hain, I'm so sorry your mom is going through this.
With regard to Jimmy Carter was president never VP but no worries that was a long time ago and he's done so much more since. President Carter has melanoma so it's not possible to compare.

An MRI can highly suggest lepto though it's important to note that the presence of symptoms is an important addition to make a diagnosis. If the MRI and symptoms don't give an obvious diagnosis a lumbar puncture can be done. Note too that lumbar puncture can easily give a false negative and it's not unusual to need more than one. They can be uncomfortable to get. Symptoms include,
Difficulty thinking
Double vision
Headaches
Difficulty speaking or swallowing
Pain
Weakness and/or lack of coordination in your arms and legs
Loss of bladder or bowel control
Seizures

WBR can be given a second time though it increases the chance to be more harmful than beneficial. Four months is very close to have WBR.

Tagrisso seems to have access to the brain though that is only anecdotal information and still so new is difficult to make an assumption that it works better than another. Giving "pulse-dose” tarceva has shown helpful in people with egfr mutation. Tagrisso is so new that there have only been those who question the possible benefit from pulsed tagrisso for leptomeningeal carcinomatosis.

this is a link has info on lepto and treating it, http://cancergrace.org/lung/tag/leptomeningeal-carcinomatosis/

I hope your mom finds comfort in whatever direction is decided.
All best,
Janine

Hain,

I'm so sorry to hear of your mom's suspected LC and the symptoms she's experienced. As Janine said, repeating WBR after only four months creates an increased risk of cognitive deficits. My wife's WBR was effective only slightly longer than your mom's, and we ruled out repeat WBR for that reason. There also isn't good evidence that WBR is effective against LC, and as Janine pointed out, the evidence is limited that Tagrisso or other new agents more effectively cross the blood-brain barrier.

Headaches and vomiting can be typical symptoms of brain mets, but usually LC is accompanied by a range of the type of symptoms Janine listed. Since an MRI can't definitively diagnose LC, I will keep hope that what's seen on the scan does not actually represent LC.

JimC
Forum moderator

Hi hain,

Thanks for the link to an interesting study. Although it's a small group of patients, it does suggest good CNS penetration by Tagrisso, and since the options for treating LC are limited, it seems like a good choice. Even if LC is not present, it may help treat the new brain mets.

Good luck...our thoughts will be with you, your mom and your family.

JimC
Forum moderator

Hi Hain

Very sorry to learn about your mom's difficulties. As others have already said LC can be difficult to pin down and the best way is via symptoms which Cat Dancer listed previously. In my wife's case it started out with headaches and gradually progressed over a 5 month period to include all of those listed. Be especially aware of her gait (how she walks). If she starts to shuffle as she walks get in to see the doctor. A lumbar puncture may not be definitive but it definitely was used to diagnose Beth's condition. LC raises the pressure of the spinal fluid. I believe, but could be wrong, they also analyze the fluid for evidence of cancer cells.

Don't be confused by brain lesions because LC is cancer of the lining tissues that surround the brain. Radiation does not effectively treat it. There is currently no treatment that works well other than possibly pulse dosing Tarceva for those with EGFR mutations or perhaps some of the new generation drugs. I certainly hope in your mom's case this is a false diagnosis. Enjoy every day you have with her and I wish you and your family a blessed Holiday Season.

Bob4Beth

I hope so too hain and I hope your mom and you and yours are having some good moments as well. All the best, Janine

Hain

Please remember I'm just a past care giver so what I say has little medical merit but I do not think the headaches are from the brain lesions. I would call her oncologist and explain the headache symptoms. I remember Beth's oncologist suspecting LMD or LC based on the persistent headaches, but she was also having some double vision and problems with walking too. They did a spinal puncture and it was evident what she had just by the pressure of the fluid. The pressure build-up could be causing the headaches, but again I don't know and don't remember what specifically they did to relieve the headaches.

I believe it's important to pinpoint the diagnosis. It's possible they already feel confident with the results of the MRI. If that's the case then ask them to get her some relief from the pain. Ask him what he would do if it were his mother.

Wishing you and your mother the best possible outcome.

Bob

Hain

One other thing - Jim knows a lot more than me and if he says brain lesions could be the culprit than that may be all it is, but she still deserves some pain relief. Contact her onc first thing tomorrow or take her in.

Bob

Hi Hain,

I agree with what Bob has said. Whether it is LC or brain lesions (or some unknown factor) that is causing the headaches, pain relief is the top priority. If the cause is brain lesions, it tends to be the swelling around those lesions that produces the pain, and that swelling can often be reduced with steroids (typically Decadron/dexamethasone).

I'm not sure I understand your reference to palliative care. Strictly speaking, all treatment for stage IV lung cancer is palliative, but that doesn't necessarily mean you don't try to destroy cancer cells or remedy other conditions, either of which may fulfill one or both of the goals - lengthen life and improve the quality of life. That's exactly what you'll be trying to do with the next treatment regimen. There may be interventions which may not be warranted in a specific set of circumstances, but as Bob said it would be good to get an evaluation by the oncologist or if necessary, at the ER, to see what the options are..

JimC
Forum moderator

HI Hain. I hope your mom's pain is under control and she finds some comfort. Remember what Jim said about the 2 goals of treating stage IV nsclc are longevity and quality of life. Dr. Weiss said every treatment is based on these goals. Comfort care is such an important part of quality of life right now that I want to make sure you're not missing this issue. Not too long ago comfort care wasn't considered so important but that thinking has taken a 180 degree turn and has become extremely important. It may be that your mom isn't getting the type or amount of pain meds needed at this time.

I hope your mom is feeling less pain.

Janine

Hain,

It's really a question of finding the balance between effective pain control and excessive drowsiness, if possible. Although that goal may not be attainable if the pain is too great, I hope that you can find that balance. I also hope that the new treatment regimen will help lessen her pain.

JimC
Forum moderator

Hi Hain

Based upon the set of symptoms you describe it seems to me that your mom does have LMD. I'm a bit surprised that her onc does not just go ahead with the LP to confirm the diagnosis but is a delicate procedure and can be uncomfortable and maybe he/she doesn't want to put her through it.

You're between a rock and a hard place with few good options. My wife responded initially well to pulse dosing tarceva but the relief was short lived, a month or 2, and then it progressed very quickly.

I cannot comment on intrathecal chemo or the other drug options but I would advise discussing hospice and focusing on her comfort and safety at this point. Does she have bed rails? Balance is a real problem and you do not want her getting out of bed on her own.

I am saddened by the turn of events and wish I could be of more assistance.

Bob

Hi hain,

I am sorry that your mom's LMC has been progressing so rapidly. Unfortunately, the pattern is very similar to that which my wife experienced. Based on that, I would agree with you that it may not be feasible to wait two or three weeks to get approval and begin treatment with Tagrisso.

There really is no evidence-based clear choice at this point, just anecdotal reports. I think the choice is between comfort care alone or making an educated choice of agents which may cross the BBB in sufficient concentration to be effective, based on theory and anecdotal evidence. It's also important to remember that even if enough of the treatment reaches the CSF, LMC often does not respond to therapy.

I know just how difficult this time is for you and your family, and my thoughts are with you.

JimC
Forum moderator

Hain,

My dad was also diagnosed leptomeningeal carcinomatosis 2-3 months ago. Stanford oncologist suggested a combo of carboplatin, alimta, avastin, and tarceva pulse therapy. Please chech with your mom's oncologist regarding this combination therapy.

Also take good care of yourself,

Kkh130

Hi Hain,

That's terrific to hear how well your mom has responded to Tagrisso; I hope that response lasts a long time!

I think it's worth asking her doctor about an MRI of that area, although I would normally associate a spine met pressing on the nerve with pain rather than focal weakness (which is typical of LMC). But if the MRI procedure (or the prospect of radiation) isn't too uncomfortable for her, it's worth evaluating.

Wishing your mom continuing and increasing comfort,

JimC
Forum moderator

Hi Hain

I cannot speak for others but can tell you that my wife also had great difficulty walking due to weakness and transferring in and out of bed was difficult and required assistance. She actually fell from bed twice trying to get up on her own so I out rails on the bed.

LMD not only affects the meninges that surround the brain but throughout the entire CNS so in my humble opinion it is not a local tumor impinging on a nerve but just typical behavior of LMD. Anything is possible, however, so check out your suspicions with her oncologist anyway.

I am also happy the Tagrisso is helping with nausea, headaches, and double vision. They key here is to keep her quality of life as good as possible. Best of luck to both of you.

Bob