Lepro mets

Hi Rose,

I posted on the other Leptomeningeal thread. I'm not having chemo directly into the spine (don't offer that here for some reason, I think we're behind the times in all sorts of treatments), but I'm in the same boat as far as diagnosis.

My mets showed up on MRI after a month of headaches (& other subtle signs). I hope the chemo deals to the mets & gets you walking & symptom free again soon.

I had radiation (3 lots) and my symptoms have improved.just got to get over the rads now.

Thinking of you

kt

Steelrose, I really have no experience, but I wanted you to know I'm thinking and praying for you. I certainly hope the chemo helps quickly for you.

I am sorry to hear of your diagnosis, and a very knowledgeable member named Agness has had the same thing and may be a great source of information for you. I hope you do very well on your treatment!

Below from my MBC Guide is the chapter about Leptomeningeal Mets. You (and others) are welcome to request a complimentary copy of the 120+ page booklet by visiting the top of this page:https://community.breastcancer.org/forum/8/topics/831507?page=2#idx_32

Once LM is diagnosed, it is important to check:

• The patient's ER, PR and HER2 status, as this will help to determine potential therapies.

• Whether the disease is bulky or diffuse:

• Bulky Disease: Radiation therapy is only given to relieve symptoms in areas of bulky disease because chemotherapeutic agents do not appear to penetrate tumors or nodules (smaller tumors) in the meninges. From: http://brainmetsbc.org/en/content/leptomeningeal-metastases-1
• Diffuse Disease: Chemotherapy is given for diffuse disease and may extend life for several months, or sometimes for a longer time. From: http://brainmetsbc.org/en/content/leptomeningeal-metastases-1

• Whether IntraCranial Pressure (ICP) is elevated. If intracranial pressure is elevated, radiation may be a way to relieve CerebroSpinal Fluid (CSF) obstruction if needed. Relief of CSF outflow obstruction has been shown to improve functional status and is likely to prolong survival in these cases.A VentriculoPeritoneal Shunt (VPS) placement procedure can be used, which carries a small risk of hemorrhage, infection, or shunt malfunction.However, placement of a VPS is a definitive treatment for elevated ICP, and may be combined with a reversible on/off valve to facilitate administration of IntraThecal (IT) chemotherapy.For those in whom a surgical procedure is not desired or tolerable, palliative Radiation Therapy is also effective in relieving CSF outflow obstruction, although the duration of benefit is variable.From: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3623833/

The information below focuses on medications to treat LM.In addition to drugs, palliative radiotherapy can be used with Intrathecal or intravenous chemotherapy.From:http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3623833/

Unfortunately, there currently is no agreed-upon standard treatment LM. Sometimes the benefits of treatment are offset by treatment side effects.Especially if there is uncontrollable disease in other organs, treating symptoms of the disease but not the disease itself may be the best option.

Drug Delivery options for leptomeningeal metastasis

Depending on the therapy, drug delivery may be provided as follows:

• IntraThecally (IT) directly into the cerebrospinal fluid, usually via an Ommaya reservoir
• Orally
• Through an IV port

• Intrathecal drugs are usually delivered directly into the cerebrospinal fluid through an Ommaya reservoir, which is a device inserted in the head, under the scalp.The hair where the reservoir will be inserted is shaved and the patient is put to sleep or made very drowsy while the device is put in place. There may be a small raised area where the Ommaya reservoir is located.Like a port, the device remains in place during the course of treatment.Intrathecal therapy is generally reserved for patients whose systemic disease is under reasonable control and who are in good physical condition. It is important to have cerebrospinal flow studies done before intrathecal chemotherapy is undertaken to make sure there are no blockages. Occasionally, doctors will use radiation to relieve flow blockages.From: http://brainmetsbc.org/en/content/leptomeningeal-metastases-1

There is no direct evidence that IntraThecal (IT) chemotherapy, which is introduced directly into the cerebrospinal fluid, is better than intravenous chemotherapy, which is given through the veins. From: http://brainmetsbc.org/en/content/leptomeningeal-metastases-1

• Orally administered medications are usually taken in pill, capsule, or liquid form.
• IV (Intravenous) Ports: The types of chemotherapy "port" devices are listed in the section entitled "Chemotherapy."

treatments for leptomeningeal metastasis

LM drug options are varied, and may include the following drugs. Typically, Cytarabine, Herceptin, Methotrexate and Thiotepa are the most commonly used.

• ANG1005 (Not Yet FDA approved)
• CranioSpinal Irradiation (CSI)
• Cytarabine (DepoCyt)
• Gemzar (Gemcitabine)
• Herceptin, with or without Tykerb
• Hormonal Therapies
• Leucovorin
• Methotrexate
• Thiotepa (Thioplex)
• Whole Brain Radiation (WBR)
• Xeloda (Capecitabine)

• ANG1005: This is a Taxol-like drug being studied to treat brain metastases and Leptomeningeal Metastases (LM). Interim Phase 2 study results demonstrate that breast cancer patients with brain metastases treated with ANG1005, including a subset of patients with LM, achieved encouraging responses. Of the 21 heavily pre-treated patients with LM, 5 patients (24%) achieved a partial response and 11 patients (52%) had stable disease. Estimates of survival in patients with LM treated with ANG1005 predict a median survival of 38.4 weeks as compared to 4-6 weeks if left untreated, or 12-24 weeks with conventional chemotherapy. In addition, ANG1005 demonstrated intracranial and extracranial antitumor activity in patients with various other subtypes of breast cancer including patients previously treated with paclitaxel. ANG1005 was shown to be generally safe and well-tolerated, and demonstrated an adverse event profile consistent with conventional taxane therapy.From: http://www.businesswire.com/news/home/20151120005128/en/Angiochem-Reports-Positive-Clinical-Data-ANG1005-Breast

• CranioSpinal Irradiation (CSI): Full CranioSpinal Irradiation to the skull and/or spine may lead to complete or partial response in approximately half of breast cancer patients with leptomeningeal disease, though it is not curative and reports are limited.This therapy can cause significant side effects, so other treatments may be preferable. From: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3625760/

• Cytarabine also known as DepoCyt, Cytosar-U, Ara-C, or Cytosine Arabinoside belongs to a group of drugs called anti-metabolites which interfere with cells' ability to make DNA and RNA, which stops the growth of cancer cells.

• 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/

• Thiotepa (Thioplex) is another commonly used agent.This drug is cleared from CerebroSpinal Fluid within minutes and has survival curves similar to those of Methotrexate with less neurologic toxicity From: http://emedicine.medscape.com/article/1156338-treatment

• Whole Brain Radiation (WBR): As its name indicates, in this therapy, radiation is delivered to the entire brain.One study reported a series of patients with leptomeningeal spread of cancer, of which 46 patients had breast cancer, and 43 underwent WBR. Among the breast cancer patients, there was a 61% "crude" rate of stabilization or improvement of symptoms with WBR.From:http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3625760/

Preservation of Memory with WBR:There is a type of WBR that is a "hippocampus sparing procedure" which may help to preserve a degree of memory that might otherwise be lost as a result of the procedure.In a study of 113 patients, at four months after undergoing the hippocampus sparing procedure, the decline in recall (as compared to baseline) was 7%, significantly better than the 30% cognitive decline in the historical control group that received WBR without thehippocampus sparing procedure.From:http://jco.ascopubs.org/content/early/2014/10/21/JCO.2014.57.2909

• Xeloda (Capecitabine): There have been some reports of remission with this drug.From: http://www.brainmetsbc.org/en/content/leptomeningeal-metastases-1

One person wrote that his mother, who has HER2 negative LM, was given Intrathecal Methotraxate via lumbar puncture twice a week for one month and weekly the next month.Afterwards, she received it every 3 weeks. Xeloda was added after the 6th dose at a concentration of 1500 mg in the morning and 1500mg in the evening daily, and she is now in remission.

Detailed information about potential therapies for LM can be found at: http://bcwatchdigest-brain.evidencewatch.com/

For some patients, a Clinical Trial may be appropriate.For a free professional Clinical Trial search, call 1.800.4.CANCER (1.800.422.6237).A trained National Cancer Institute (NCI) professional will obtain the patient's specific criteria and forward a list of potential Clinical Trials.

Great info Bestbird, I will show my oncologist.

I would definitely like more options to give me qol & extended survival! As I'm sure we all do...

Thanks for the greetings from California, Rose I've only been to the airport in LA on a stopover so haven't set foot in the US. Not sure that I'll get overseas again.

I will be thinking of you as your treatment decisions are being made. Let us know how you go.

kt

Hi all.

How was Monday's appointment with your oncologist Rose? (mind you- you may not have had it yet, we're ahead of you here!) I hope it goes/went well.

I saw my oncologist yesterday and he spent a bit of time trying to find trials for me, but there weren't any open He's decided to put me on methotrexate with cyclophosphamide (both oral- I hope my brain can organise itself well enough to take the right med at the right time!- not sure I have much faith in it after all the rads)

Thinking of you

kt

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

I posted more on this recently at:

https://community.breastcancer.org/forum/8/topics/...

Healing wishes for all, Stephanie

Dear Rose, I am so sorry to hear this latest turn of events, but at the same time glad that you have an accurate dx so that you are getting the correct treatment. Know thine enemy! I hope a short stay in the hospital and some physical therapy will have you feeling better and stronger. Sending love and healing thoughts to you.

A ton more good wishes for you, Rose. We are all behind you on this new path to recovery!

Hi Rose, I hope things have improved for you after the steroids & fluids and that the PT is helping.

Feel better real soon

kt

Wish I could come visit you, Rose, and you get to start rehab soonest.

kt, hope you are feeling better everyday after rads.

Thinking of you Steelrose and hope they are treating you well. I also hope Stephanie is right and the PT does a world of good for you. We are all thinking of you today and hope the issues clear up soon and you can return to your own home!

KT, I hope you are feeling better too and the new meds go OK and keep you tooling along.

hi rose. Thinking of you often. Did you make it to rehab? I am praying for some improvement for you.

Mary Anne

Hi everyone. Welcome GirlWarrior! Sorry you find yourself here.

Did you have WBR? Are you dealing with any se's or symptoms? I hope you're going well anyway.

Rose, how're you doing? I hope you continue to improve. Thinking of you.

I've started with a bit of nausea & vomiting in the mornings again. I'm hoping it's just because I'm weaning off the Dex, down to 2 mg now (my onc hates the stuff). Also getting the pins & needles in my feet going all the way up my legs sometimes- apparently the chemo can do that? I can probably put the head & spine discomfort down to increased inflammation because of the reduced Dex too.

Apart from that & very little energy everything's hunky dory It's all fun & games in cancer land...

Hi Rose,

Great to see you back I hope you've well & truly recovered from the pneumonia and are feeling heaps better! If not yet, asap.

(Actually that's why I've been on daily prophylactic antibiotics since mid August, my onc said you can get pneumonia from being on steroids long term)

Good luck with the PT tomorrow - I hope it's fun as well as a workout.

Take care