Lepromenngeal

Thanks kt1966! Not feeling any major side effects but too soon for it to be helping either and it's discouraging feeling symptoms getting worse... Hope the vinorelbine is helpful for you.

Best wishes to all. Xx

Hi, still on Xeloda . Feeling out on a limb for not doing wbr but it was not recommended first option for me by either onc. Doctors are happy that I can still hold decent conversations and move around with a frame but still... Asked why wbr not recommended for me and think it was to do with previous treatment, location of leptomeningeal mets, chances of benefit and other complications - I also have spinal cord compression & liver mets. So bad prognosis anyway and maybe no time to benefit from rads? How do people stop second guessing their decisions? Or if there's a clear recommendation from your team do you just go with it?

Best wishes to all.

Sunflower xx

Mandy, how's the A/A going for you?

I hope it's done the trick with your effusion & you're feeling well.

Found out today that no more treatment is on offer for my leptomeningeal mets so being taken off capecitabine and nothing else given. They think radiotherapy will not help and damage my quality of life (since I can still think, eat and hold conversations, and walk with a frame). Good luck to all still on treatment and thank you for giving me some hope for a while. Will try and get some rest now.

Sunflower xx

Please excuse my dropping in, as I noticed Sunflower's post about having reached the end of available treatments and wanted to provide a little bit of information. Below is an abbreviated list of what is used in the US, and one can cycle back to a treatment that was used years before, if it was successful (i.e. hormonal therapy). Perhaps something may be available that might be of help, and again, my apologies for the intrusion.

• Gemzar (Gemcitabine): This is a commonly used chemotherapy drug for MBC which may be helpful in cases of LM. From: http://emedicine.medscape.com/article/1156338-treatment

• Herceptin: For women with HER2 positive LM there is increasing and seemingly successful use of intrathecal Herceptin both with chemotherapy and alone.Many of these successes have been reported as case studies, although one small trial was done in Spain with promising results.Several trials are now underway to verify these results in larger numbers of patients.In these case studies, low dose (15mg-40mg weekly) and high dose (100mg-150mg weekly) Herceptin have been used.High doses appear not to be toxic and the brain swelling that it causes can be controlled by gradually increasing the dose of Herceptin and using steroids. Intrathecal Herceptin can also be delivered by lumbar puncture to the spine.One woman survived 27 months after LM diagnosis.A complete leptomeningeal response, with no evidence LM at necropsy, was achieved after receiving 67 weekly administrations of intrathecal Herceptin with marked clinical improvement and no adverse events. In some cases, Herceptin may be combined with Tykerb.. From: http://www.ncbi.nlm.nih.gov/pubmed/21369716

• Hormonal Therapies: There have been reports of remissions with Arimidex, Aromasin, Letrozole, Megace and Tamoxifen.Sometimes the drug may be administered IntraThecally.From:http://www.brainmetsbc.org/en/content/leptomeningeal-metastases-1 and http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3625760/

• Leucovorin can be used as a rescue after dose-intense Methotrexate therapy to lessen the effects of MethotrexateFrom: http://www.aboutcancer.com/meningeal_review_utd.htm

Methotrexate is one of the most commonly used chemotherapy agents for LM. It appears as though IV chemotherapy with high-dose Methotrexate may confer increased survival over radiation therapy alone.From:http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3623833/

I'm so sorry for your latest news, Sunflower.

I wish you comfort & peace, and good quality of life for as long as possible. Will be thinking of you.

kt

Hi Mandy. I hope things are calming down with your mother, and that you are doing well.

Sunflower, I'm still thinking of you & hope that you are comfortable & surrounded by those you love.

I've just finished another 4 radiation treatments to my spine due to symptoms. Hoping it will hold things off for a bit. Not feeling too great, but will hopefully begin recovery soon...I'm going to a family lunch today (my nieces 21st) - so nice to have things to look forward to.

Take care, kt

Good luck with the CT KT....Scanxiety get me so wound out I get exhausted. I'll be thinking of you.

Rose, I am sorry to hear you are dealing with those leptomeningeal mets. I am sure someone will be along with more info and help.

Hi Rose.

I was diagnosed with LM mets in July. It is v scary at first. I'm getting kind of used to it now- yet another thing to deal with day by day... I asked about intrathecal chemo but it's not on offer here. I've just finished 3 lots of radiation- WBR, lower spine, then upper spine. It is very tiring, but once I get off the steroids and am a few more weeks down track I'm hoping for some more energy.

I know there are people, like Mandy here who have had this diagnosis for over 3 years! So there is definitely hope. I'm hoping for a lot longer yet as my kids aren't fully grown! One still at home, the other still at home in the weekends (19 & 21). I want o see them finish university & get jobs, relationships etc etc.

I hope that your treatment goes well, whatever you have. Please let us know how you're going. There don't seem to be many of us dealing with this.

((Hugs))

Thanks to you, Mandy. Xeloda was my first chemo in 2010. Maybe we can recycle it! Glad you're here with a success story!

Hugs to you...

Rose

I want to get the correct spelling of Leptomeningeal Carcinomatosis (not Lepromenngeal) into the bco archives for future searches by bco members.

Here are some excerpts from Medscape http://emedicine.medscape.com/article/1156338-over... .

I've used bold-type for some of the breast cancer specific entries - the statistics are grim, but here's a nugget for us breast cancer folk:

Among patients with LC from solid tumors, the best response to chemotherapy and radiation occurs in those with LC from breast cancer, with 60% improving or stabilizing and a median survival of 7 months; 15% survive for a year…

You'll need to register at no charge with Medscape to access the full entry:

Leptomeningeal carcinomatosis (LC) is a rare complication of cancer in which the disease spreads to the membranes (meninges) surrounding the brain and spinal cord. …

Signs and symptoms

Meningeal symptoms are the first manifestations in some patients (pain and seizures are the most common presenting complaints) and can include the following:

• Headaches (usually associated with nausea, vomiting, light-headedness)
• Gait difficulties from weakness or ataxia
• Memory problems
• Incontinence
• Sensory abnormalities

CNS symptoms are divided into the following 3 anatomic groups:

• Cerebral involvement: Headache, lethargy, papilledema, behavioral changes, and gait disturbance.
• Cranial-nerve involvement: Impaired vision, diplopia, hearing loss, and sensory deficits, including vertigo; cranial-nerve palsies commonly involve CN III, IV, VI, VII, and VIII
• Spinal-root involvement: Nuchal rigidity and neck and back pain, or invasion of the spinal roots.

Management

Leptomeningeal carcinomatosis is incurable and difficult to treat. Treatment goals include improvement or stabilization of the patient's neurologic status, prolongation of survival, and palliation. Most patients require a combination of surgery, radiation, and/or chemotherapy.

Background

Leptomeningeal carcinomatosis (LC), also termed neoplastic meningitis, is a serious complication of cancer that carries substantial rates of morbidity and mortality. It may occur at any stage in the neoplastic disease, either as the presenting sign or as a late complication, though it is associated frequently with relapse of cancer elsewhere in the body.

LC occurs with invasion to and subsequent proliferation of neoplastic cells in the subarachnoid space. Intra-axial CNS tumors of diverse origins and hematologic cancers may spread to this space, which is bound by the leptomeninges. Infiltration of the meningeal space may thus occur from drop metastases via spread of the extra-axial space, hematogenous seeding, or local perinueral invasion; perinueral invasion is not infrequently seen in the context of gastric cancer or head and neck cancers.

The leptomeninges consist of the arachnoid and the pia mater; the space between the 2 contains the CSF. When tumor cells enter the CSF (either by direct extension, as in primary brain tumors, or by hematogenous dissemination, as in leukemia), they are transported throughout the nervous system by CSF flow, causing either multifocal or diffuse infiltration of the leptomeninges in a sheetlike fashion along the surface of the brain and spinal cord. This multifocal seeding of the leptomeninges by malignant cells is called leptomeningeal carcinomatosis if the primary is a solid tumor, and lymphomatous meningitis or leukemic meningitisif the primary is not a solid tumor.

Lymphomatous or leukemic meningitis is somewhat of a misnomer, as meningitis implies an inflammatory response that may or may not be present. First recognized by Eberth in 1870, LC remains underdiagnosed even today. Nevertheless, it has been recognized more frequently in the last 3 decades than before because of improved diagnostic tools, therapy, and awareness. It is not a single entity pathologically; it can occur concurrently with CNS invasion or wide dissemination in the intraventricular spaces, or in association with CNS metastases, with the clinical picture differing somewhat in each case.

Epidemiology

Frequency

United States

Approximately 1-8% of patients with cancer are diagnosed with LC, and it is present in 19% of those with cancer and neurologic signs and symptoms on autopsy, usually in those with disseminated systemic disease. LC is present in 1-5% of patients with solid tumors, 5-15% of patients with leukemia, and 1-2% of patients with primary brain tumors. LC can be the presenting symptom 5-10% of the time; however, the exact incidence is difficult to determine. Gross inspection at autopsy may miss LC, and microscopic pathologic examination findings may be normal if the seeding is multifocal or if an unaffected area of the CNS is examined.

Adenocarcinomas are the most common tumors to metastasize to the leptomeninges, although any systemic cancer can do so. Small-cell lung cancers spread to the leptomeninges in 9-25% of cases; melanomas, in 23%; and breast cancers, in 5%. However, because of the different relative frequencies of these cancers, most patients with LC have breast cancer.^[3] Lung cancer is the second most common tumor associated with LC.

The incidence of LC increases the longer a patient has the primary cancer; LC is accompanied by other intracranial metastases in 98% of patients with a nonleukemic primary cancer.^[4] LC is becoming more common with increasing survival from systemic cancers.^[28]

xxx

• Trastuzumab has been given intrathecally to treat LC from breast cancer. ^{[9, 38, 39, 40]}
• 
  
• There are case reports of LC from non-small cell lung cancer (NSCLC) or breast cancer responding to intrathecal gemcitabine, trastuzumab, letrozole, and tamoxifen.

Writing for my mom Anne who has Stage IV ILC ER+/PR+, HER2-. She was first diagnosed in Summer of 2011 with mets to uterus, ovaries and tons of bones. She had a total hyster and started on Taxol. Within a year she was changed to Gemzar, then 6m-1y later went on Navelbine for awhile. Next she went on taxoterre for a while after Navelbine. Then a couple years ago went on Femera, then Femera and something with it, then Faslodex, then Affinitor for about a year with something else, followed by Ibrance for less than 6 months. Now she is on Xeloda since Late August.

Since starting the oral chemo and hormone therapies 2 years ago, her cancer markers would slowly continue to go up each month. Her PET scans were always unchanged or minor progression within the bones over these last 2 years. But with the cancer markers going up continuously It prompted her oncologist to change her treatment more frequently.

A month ago she developed a droopy eye and some blurry vision issues so her oncologist had her get a Brain MRI which was negative for metastasis.

Since her cancer markers just kept going up some, her oncologist had her get a lumbar puncture last week and the results just can back showing atypical cells suspicious for metastasis.

Apparently her oncologist said treatment with intrathecal chemo and radiation treatment and repeat LPs and MRIs to check progress would only buy her a couple more months and have her a months to year left diagnosis. Her oncologist seemed to recommend stopping all treatment and for her to go on hospice.

Does continued treatment really only give you a couple more months? From the stories here it would seem like that isn't the case.

My mom is under the impression that brain/spinal cord radiation or intrathecal or other chemo treatments are painful and have horrible side effects. Can anyone speak of the side effects?

At the very least I would think continuing an oral chemo like he Xeloda for awhile longer might have its benefits over quitting treatment all together.

Any feedback would be appreciated. I'm not ready to lose my mom and hoping for reasonable treatment option.

Hi all, I hope you're going well.

Still thinking of you sunflower- I hope you're comfortable & surrounded by love.

Mandy & Rose, I hope you're both doing well too.

How's your mom chicagored? Did they decide on treatment?

I saw my oncologist this morning. I'd been having increased symptoms like double vision, facial spasms, neuropathy and headache/sacrum pain. He's said its progression & he doesn't have anything left to offer me. It's taken me aback. I really thought there might be something else...

I tried to push for a biopsy of my liver, just in case I'd switched to Her2+, but he said no.

So, I will adjust yet again. So sad I won't see my kids grow up (19 & 21- one at uni one at home) and settle into grown up relationships & jobs. And I won't be there to grow old with my hubby...

Breaks my heart to read KT's last post about her kids and husband. She was so kind and supportive. I hope her family knows how much she meant to all of us