Leptomeningeal Cancer - 1272562

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hammer
Leptomeningeal Cancer - 1272562

Dear Grace,

My sister's stage IV lung cancer has now become Leptomeningeal. She was supposed to get intrathecal siposomal cytarabine today, but there was a mix up and Kaiser didn't have it ready this week. We don't think a delay in treatment is a good idea. Her doctor proposes methotrexate this week instead. Is this a viable option?
Questions:

1) What is the current best, most promising treatment available for LM cancer? I notice that intrathecal chemo was not very popular with Dr. West a few years ago from older posts. Is this still true or has treatment improved?
2) Can Opdivo impact LM cancer? (My sister also started Opdivo last week).
3) Is methotrexate a viable option for just this week so that we are doing something? Her cancer is super aggressive. Are toxicities with this super high and scary? (My sister also receives Irinotecan to keep her lung tumor in check. Without weekly Irinotecan, her pain jumps out--of-control within days.

Best,

Hammer

catdander
Hi Hammer, I'm so sorry

Hi Hammer, I'm so sorry about your sisters new diagnosis. I've ask a doctor to comment. I hope she finds comfort in the days ahead.
Janine

Dr Pennell
Dear Hammer, I am sorry to

Dear Hammer, I am sorry to hear about your sister's cancer but thank you for sharing.

Leptomeningeal carcinomatosis (LMC), or cancer growing in the lining and fluid around the brain and spinal cord, is a very serious problem because it can lead to problems with nerves as they come out of the brain and spinal cord as well as increased pressure in the brain (hydrocephalus). It is very tough to treat because most chemotherapy and targeted drugs do not penetrate into the brain or meninges.

There is very little evidence that giving chemotherapy intrathecally (IT; directly into the cerebrospinal fluid) makes a significant impact on how long lung cancer patients live with LM disease. The only drugs safe to use are cytarabine and methotrexate and neither of those is particularly effective against lung cancer. If one were going to be used, I do not think it makes a difference which one was chosen. I personally do not routinely recommend it for my patients but I know some do so it would be a decision to make on an individual basis with her oncologist.

In situations where the lung cancer had targetable mutations such as EGFR mutation, there is some evidence that drugs like Tarceva or Tagrisso could help in LM disease, but unfortunately most cancers do not have these mutations.

Immunotherapy like Opdivo is actually a promising treatment for cancer in the brain. There is some evidence (Not much yet but what there is is promising) that these drugs can have responses in the brain if they also work outside the brain, and while I do not know any instances with LM disease it would make sense that it might work there as well.

I know this isn't good news but I hope it answers some of your questions.

hammer
Dr. Pennell,

Dr. Pennell,

Thank you very much for your detailed response. I had somehow missed noticing it this week. It's not good news, but it sounds like leaving her on Opdivo to see what happens is a viable option for now. She's had two infusions so far so too early to tell if it's working.

She had de novo resistance to Tarceva (but no T790 mutation) even though she has a EGFR mutation. It's unclear whether it would still be worth trying some different EGFR targetted drug?

Thanks again,

Hammer

catdander
Hi Hammer I'll make sure Dr.

Hi Hammer I'll make sure Dr. Pennell sees this Monday...if he's available.

Always hoping,
Janine

Dr Pennell
Hi Hammer, I agree there

Hi Hammer, I agree there likely has not yet been time to know if Opdivo would be working yet. If EGFR-directed therapy did not work for someone outside the brain then I suspect there would be little reason to think it would help in the brain, but given the EGFR mutation I would say this is too complex a question to answer without knowing a lot more about your sister's situation.

hammer
Thanks Dr. Pennell

Thanks Dr. Pennell

health3
My sister had a stare and we

My sister had a stare and we found out later that she had Hydrocephalus - just thought I would share
that. They can see that from an MRI or CT of brain

clyeh67
We have a similar situation.

We have a similar situation. My husband was also diagnosed with Leptomeningeal Carcinomatosis in late January, 2016. He just finished WBR yesterday and has resumed pulsed-dose Tarceva. We now have to make a decision if he will do intrathecal chemo (methotrexate and depocyt) as his neuro-oncologist suggested. He had a brian MRI scan two weeks ago showing that his lepto has reduced, after three weeks of pulse-dosed Tarceva and three sessions of WBR. He is now back on 900mg pulsed-dose Tarceva every four days. He has no other detected cancer below his neck. Right now, his vision has slowly improved but not fully recovered yet. He also fainted a few times after he started WBR. Overall, his headaches, nausea, and vomiting have improved but he still has the balanced issue. If intrathecal chemo will not benefit patients with lung cancer, I wondered if he should do it. I would like to hear your thoughts. Thank you very much.

Emily

JimC
Hi Emily,

Hi Emily,

It's good to hear of your husband's response to WBR and pulsed Tarceva. It's hard to know which of these approaches caused his improvement, although if there was a scan after a period of pulsed Tarceva but before the WBR, that might provide a clue.

There was a good discussion of radiation, pulsed Tarceva and intrathecal chemo here.None of the faculty members in that thread endorsed intrathecal chemo for LMC in lung cancer (where it doesn't tend to work nearly as well as in breast cancer LMC cases), It should also be noted that it tends to be especially difficult to tolerate. Dr. West concluded his remarks with:

"I am not especially fearful about the negative side effects of WBRT, but I'm also not wildly optimistic about its likelihood of helping. I do at least feel that it's less intensive than intrathecal chemotherapy, so I might consider it a very fair option in a patient who isn't declining from week to week. If it appeared that things were worsening very readily, I believe I'd prioritize comfort and be inclined to minimize interventions."

Given the possibility that pulsed Tarceva is driving your husband's improvement, together with the general lack of enthusiasm for intrathecal chemo, it seems that continuing pulsed Tarceva may be a reasonable option.

My best to you and your husband.

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

clyeh67
Dear Jim,

Dear Jim,

I am sorry about your wife. Thank you very much for your feedback. I will discuss this with his doctor on Tuesday.

Emily

clyeh67
It looks that my husband

It looks that my husband cannot avoid intrathecal chemo. We went to get a second opinion and the neuro-oncologist recommended that my husband should do intrathecal chemotherapy (depocyt) via Omaya reservoir. He also thinks that my husband needs to get a shunt in the brain because of the high pressure in CSF. My husband had a lumbar puncture last Wednesday and the pressure was 32, even after WBR and two doses of 900mg Tarceva. His local neuro-oncologist wants him to do intrathecal chemo via lumber punctures as early as this coming Friday, because he thinks that my husband is not responding to the treatment. His left vision has yet to recover and his left leg is sometimes numb.

Emily

catdander
Hi Emily, We really

Hi Emily, We really appreciate your sharing your husband's journey with us on Grace. I hope he responds to treatment.
I'll keep him and you in my thoughts,
Janine

clyeh67
Janine, thank you for your

Janine, thank you for your nice message.

Hammer, how is your sister doing? Best wishes to you and your sister.
Emily

hammer
Hi Emily and Janine,

Hi Emily and Janine,

Thank you for asking about my sister. I have been meaning to post on Grace that she passed away on February 21. It has been a very sad few weeks for me. We had Hospice for the last week. They were very helpful.

I have been noticing these posts about your husband Emily, but didn't know what to say that could be very helpful. It is unclear whether the intrathecal chemo gave my sister more time or not. She lasted two months on it from when they found the LM progression. However, she lasted 14 months total from her initial diagnosis of Stage IV metastatic lung cancer. That's better than the 6-9 month prognosis she was given at the start.

The last few weeks, she was staring blankly a lot, but she didn't have the headaches and other gate symptoms that would indicate her LM cancer was her big problem. She had such extensive cancer throughout her body so her symptoms were widespread and it was always tough to know what was causing what. She was also getting regular Irinotecan chemo and the intrathecal chemo as well as being on Opdivo. I do think that adding the extra chemo meant that her toxicity increased a lot. Ultimately, this meant that she could no longer get any treatment as her blood counts and liver function were too low. She died a week after she couldn't get chemo. She deteriorated rapidly with a lot of pain in her lung and liver area, and she quit eating or drinking. We had to transition her to methadone the last week from Fentanyl for severe pain. We also had to use Dialudad for breakthrough. I'd say the most challenging of all this for caregiving was getting doses adjusted correctly to control pain yet still keeping her functioning. She did finally totally lose her appetite and last few days lost the ability to speak and swallow anything, even water. I gave her medications smashed up in a tiny bit of water with a dropper inside her cheek.

I know this is so hard. Take care. --Hammer

clyeh67
Hello Hammer,

Hello Hammer,

I am so sorry to hear this. My heart goes out to you. Thank you very much for sharing the information with me. I knew how painful it is for you to type them. My thoughts and prayers are with you.

Emily

bobradinsky
Hammer

Hammer

I was sad to learn that you lost your sister to LMC. I know how brutal that disease is and how hard it must have been for her and you. Please accept my sincere condolences and hope that with time you will heal and find peace. You are an exemplary caregiver and hope you stick around the site to help others with your insightful observations.

Emily

I am also saddened to learn about your husband. Enjoy every good day you have together. I will keep both of you in my prayers.

Bob4Beth

clyeh67
Bob4Beth,

Bob4Beth,
I am so sorry for the loss of your wife. I read your old posts. They are very helpful. You are a very loving husband. Thank you very much for reaching out to me. I appreciate your prayers as well.
Emily

JimC
Hammer,

Hammer,

I am so sad to hear of the loss of your sister. Her experience was very similar to that of my wife. She had such extensive cancer throughout her body (lung, numerous brain mets in addition to LMC, liver, bones) that it was difficult to know what was causing each specific symptom. My thoughts are with you, with hopes for peace and comfort.

Emily,

I am sorry that you and your husband are walking this road as well, and I hope that you have some good time together amidst all the difficulties. He is fortunate to have you as his caregiver and wife. My thoughts are with you as well, for strength and peace as you face these challenges.

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

hammer
Hello Jim, Bob4Beth, Emily

Hello Jim, Bob4Beth, Emily and Janine,

Thank you all for your support and advice. Bob4Beth it is so nice of you to be there for others on Grace even though you already lost your wife. Having somewhere like Grace to get advice is really helpful. There are just so many questions along the way.

--Hammer

catdander
Hammer,

Hammer,
I'm so very sorry for the loss of your sister. She was so lucky to have you by her side and working so hard to find what she needed.
I wish you peace and comfort,
Janine

askrljac
Hi,

Hi,
I would like to get feedback from some of the previous posters on this thread. My mom was diagnosed with lmd on March 31, 2016. She immediately began intrathecal topotecan at md Anderson. After 6 doses of topotecan she began to have neurological decline. She is sleeping a lot and not wanting to eat. She is weak and can't walk. Her MRI from earlier this week shows improvement (less visible cancer) but you wouldn't know it by looking at her. Steroids "woke her up" for a few days but she has since slipped back into her sleepy state. We are still able to arouse her enough to take a few bites of food, drink protein drinks etc. and she can answer basic questions. Her neuro onc at mda said there is nothing more they can do. But her Regular onc wants to keep increasing her steroids with the hope of "waking her up" a bit and try brain radiation and hopefully start opdivo. Also worth adding, her systemic (lung) cancer is completely controlled (and has been) for 2 years with a clinical trial she is on. Other than the small amount of lmd still present she is in excellent health. I am hopeful that increasing steroids might help so she can continue some kind of treatment, particularly immunotherapy. I would appreciate any other thoughts/ advice from others who have gone through this or who are knowledgeable with lmd.
Thank you

JimC
Hi askrljac,

Hi askrljac,

Generally the role of steroids in CNS involvement is to reduce the swelling caused by the cancer cells, which tends to lessen symptoms. It's not clear that increasing steroids will help much at this point.

With just the information you've provided so far, I'd be curious about whether she is also taking significant pain meds, which might also explain some of her symptoms, especially in light of the improved MRI. Perhaps lowering those dosages might help "wake her up".

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

askrljac
Thanks for your reply. She

Thanks for your reply. She really isn't taking any pain meds, occasionally one 10-325 hydrocodone tablet but that's it. We increased her steroid from 8mg per day to 12mg and she is wide awake today but saying a lot of stuff that makes no sense. I'm still hoping we can move forward with some type of treatment but I'm unsure...

hammer
Askrljac,

Askrljac,

I'm not logging on as often, but I noticed your question. I'm not a doctor, but my only other thought given that she's not on a lot of pain meds, is to get her IV hydration and check her blood counts. Two weeks before my sister passed away, she had been drinking, but we hydrated her anyway. She perked way up. It turned out that she just hadn't been able to drink enough and was in fact more dehydrated than we realized. Her blood counts were also way off in many areas because the intrathecal was so tough on her. That's my main concern about the intrathecal chemo. It seemed very hard to tolerate and very toxic. My only other thought is that even though the scans showed shrinkage, any cancer in her brain that still exists can probably be having an effect. It's possible that her confusion and sleepiness are truly the cancer which is hard given that you are hoping she can manage more treatment. I'm not very knowledgeable on this though because my sister passed away so fast that we didn't figure anything out and could never tell what was what since she had such extensive cancer and so many pain meds on board.

I'm sorry you are going through this. You will be in my heart.

--Krista

JimC
Thanks for that good

Thanks for that good suggestion, Krista. It's worth checking out dehydration as the cause of these symptoms.

When I wrote my previous response, the not clearly-spoken thought in my mind was the question of whether these symptoms are related to the CNS disease, either fully or in part, or whether there was another cause. Askrljac, has your mom seen a neuro-oncologist to have her current symptoms evaluated? That might be the best way to determine whether they are likely to be LMC-related. If the neuro-onc doesn't feel that they are, then perhaps another cause could be found and remedied, such as Krista's dehydration suggestion.

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

bobradinsky
Askrljac

Askrljac

So sorry to read about your mom's recent diagnosis of LMC. As you know it is a heartbreaking development and very difficult to treat. I have no experience with intrathecal treatment because my wife was treated exclusively with pulse dose Tarceva but I am on board with Hammer about increasing her hydration. Beth always seemed to perk up for several days after a treatment. My heart goes out to you, your family and of course your mom. Hang in there. Bob4Beth

askrljac
Thank you all for your

Thank you all for your replies. Unfortunately, as is often the case with LMC, her decline has quickly progressed. After being wide awake all day and night Friday she began to have shaking and eye jerking Saturday morning, followed by multiple seizures. I gave in and called hospice as her oncologist said now was the time. And yes, her neuro onc has been telling me for the last 2 weeks her decline was the result of the cancer, I have just continued to hope he would be wrong and we could try radiation instead of chemo. This disease has so quickly and painfully taken my otherwise healthy and strong 58 year old mom. Thank you all for your advice and kind words and prayers.

hammer
Askrljac,

Askrljac,

It sounds like it really was indeed the LMC. I am sorry because I know it is so hard to watch someone you love have seizures, so hard to watch them die and it's so hard to make that call to Hospice. I will be thinking of you. Tell her that you love her. Also, I regret that I didn't keep my sister's mouth moist enough. She kept clamping down on the moist swipe, and I was afraid she would choke. But I later found out that I could still have swiped just between her gums and teeth even though her teeth were clamped shut. Also, you can moisten her lips with chaptstick. Also, you can rearrange pillows a lot. It was the weekend, so we didn't have the Hospice nurse to show us. It all happened too fast. So look online if you have to, and find ideas for using the pillows to change her position. You just want to know that even though you can't save her life, you can do everything possible in these last days/hours to make her as comfortable as possible. You can be proud to know that you did everything you can even though none of us can do what we wish we could and keep our loved one from dying. One more thing, my sister had one seizure,and we were relieved to know later that she remembered absolutely nothing. She didn't remember having it even though for us it was horrible to witness.

--Hammer

bobradinsky
I know how difficult that

I know how difficult that decision was for you and your family but I do believe hospice is the correct call at this time. It is so sad because she was still young and I know how much you will miss her but she will no longer have to suffer the ravages of LMC. I will be praying for your mom and your family. Bob4Beth

JimC
askrljac,

askrljac,

I am sorry to hear how quickly your mom's LMC has progressed; I know all too well how devastating LMC can be. I wish her, as well as you and your family, strength, comfort and peace in the days to come. My thoughts will be with you.

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

askrljac
Thank you all for your advice

Thank you all for your advice and prayers. Once my mom started seizing on the morning of May 21st I made the call I hoped I would never have to make to hospice. The hospice nurses stayed with us 24/7 and she passed away just after midnight on May 23rd. I'm still in shock and disbelief that this all happened the way it did. She only lived 7 weeks with her LMC diagnosis. She lived happily and healthy with stage 4 lung cancer for 3 1/2 years with the systemic disease in complete remission. And then LMC shows up and takes her in 7 weeks?!?! Looking back now I can see how quickly she was declining. She hadn't walked in several weeks, she didn't want to eat, she lost 20 lbs, she slept a lot, had trouble forming sentences, she was often disoriented and had memory loss. She was so weak. But I would tell her to hang in there and keep fighting and we would find a new plan and she would say ok. My family and I have spent the last 2 months of our lives feverishly trying to save her. Literally carrying (because she was so weak) her to doctor after doctor and always begging her to hang on and take one more sip of her protein drink! This disease takes loved ones so quickly and painfully, I am just heartbroken for anyone that has to see LMC. I'm sorry for rambling but I know there are others on here who have lived through this pain as well.

I'm curious if anyone on here knows of an organization or foundation focused on researching and finding more effective treatments for LMC patients??? This is a disease that needs attention. The longer patients live with their primary cancers, the more likely they are to get LMC. I would love to be involved with ur support an organization that specifically focuses on developing LMC treatments. If you know of any, please share.

Thank you
Ashley

bobradinsky
Ashley

Ashley

Please accept my condolences for the passing of your mother. LMC is indeed a heartbreaking and difficult complication. They say it affects a very small population of cancer patients, less than 10% and possibly less than 5% but as patients survive longer with newer medications it may actually becoming more common. I know of no organizations or support groups dedicated to LMC and of no research being conducted specifically targeted at LMC, most likely because the subset is so tiny. That is the primary reason I stay involved with Grace to try my best to lend support to both patients and caregivers facing this disease. If you find any group or organization doing anything along these lines please share it with the community. I would be interested in becoming involved. My prayers are with you as you grieve for your mom. Bob

JimC
Ashley,

Ashley,

I too am deeply saddened to hear of the passing of your mother. LMC is such a difficult complication, both for the patient and her loved ones. My heart goes out to you and your family, with wishes for peace and comfort.

Although I don't know of any organizations targeting LMC, there are an increasing number of clinical investigating treatment options. A search of clinicaltials.gov produced an encouraging 26 results: https://clinicaltrials.gov/ct2/results?term=leptomeningeal+AND+carcinoma...

I continue to hope that more effective treatments for LMC will be discovered soon.

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

bobradinsky
Jim

Jim

Wonderful to learn that research and trials are being done. Thanks for sharing that. That helps provide hope for those afflicted. Anything they can do to help arrest this complication will ease the lives of many. Bob