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All TopicsForum: Stage IV and Metastatic Breast Cancer ONLY → Topic: Cancer in cerebral spinal fluid. My saga.

Topic: Cancer in cerebral spinal fluid. My saga.

Forum: Stage IV and Metastatic Breast Cancer ONLY — A place for those managing the ups & downs of a Stage IV/metastatic breast cancer diagnosis. Please respect that this forum is for Stage IV members only or those posting on behalf of a Stage IV patient. There is a separate forum for Stage IV Caregivers/Family in "Support and Community Connections".

Posted on: Dec 18, 2007 06:21PM

luckywife wrote:

Hello all,

I wrote an informational post some days ago as I found nothing on this board about bc cancer spread to cerebral spinal fluid. This is now a personal thread. I am hanging in there with the following. I am 12 years survivor. First 7 disease free. Then since 2003 on bone (extensive) and liver (few down to one) mets. Chemo since 2007 (xeloda -didn't work, taxotere - kept in control on chemo break since a Nov.)

Couple of weeks ago major and different pain going down the hip to left let with weakness in left leg. MRI of spine, brain showed cancer cells (no tumor - floating cells) in the cerebral spinal fluid which protects the spinal cord and brain from injury. These cells can deposit themselves on any of the nurves that control function of the whole body and can stop/manipulate any of these functions. So far, left leg weakness, hearing loss and also the old bells palsey diagnosis could be part of it too so left side of face partially paralized ... chew but can't smile on that side.

I had to go through a lumbar puncture last week to remove the spinal fluid for testing. Got confirmation on cancer cells in the fluid yesterday. Today another lumbar puncture was done at the hospital outpatient and a chemo drug Methatextrate (yes a bc drug) was injected. This is the only one (there is another one but almost no success) that is safe enough to inject in the area. If it kills the cancer cells, I have a reasonable chance of survival for months and about a year if lucky. If it doesn't work, progressively the cells will chose to deposit themselves wherever and the corresponding function will fail. Patient dies of one of the neurological failures. Not much looking forward to that. Lumbar puncture today was hard. My onc. insisted on doing it when I asked if the neurologist who is more used to doing can (she did the one for the test last week and that went well). He went through two stabs, pokes and shoves with no success. I could see that he was getting nervous but when they are inside such sensitive part of your body you don't want to disturb them. I tolerated and he too was kind enough to cut his losses and call on the neurologist who came and took care of it immediately. Chemo is in.

I am hopeful that this chemo will work and I will get some months at least. Please send your positive thoughts and energy my way. I will try and keep you posted. I will also participate in any way I can to support this group.

-luckywife

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Dec 18, 2007 07:21PM AusAla wrote:

Luckywife,

I am so sorry to hear of your progression.  Big hugs and prayers!  I had spinal tap a few years ago with suspicion of cancer cells.  If it had come back positive, my neuro onc told me that she would put a shunt in the back of my neck to deliver chemo directly into the fluid.  Have you docs said anything about that?  She talked like there had been good success with that method.  My cancer at the time was contained to the outer lining of spinal cord.  My thoughts and prayers are with you.  Know you have people here who care and will always be here for you.  Keep us posted. 

Hugs,

Bethie

"I don't want to be in a battle, but waiting on the edge of one I can't escape is even worse! Pippin, Lord of the Ring: Return of the King Dx 5/13/2002, IDC, 2cm, Stage IV, Grade 3, 3/17 nodes, mets, ER+/PR+, HER2+
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Dec 18, 2007 07:36PM LuAnnH wrote:

lucky, I hope the chemo they administered today helps kill off those nasty cancer cells.  I think we all fall into the category of reading to much on the internet and scaring ourselves.  I have seen women get the omaya ports and successfully treat mets in the fluid around the brain and in the spinal cord.  I hope your tx goes well and is successful!  I will keep you in my prayers!

LuAnn -- Dx 7/2/2006, IDC, 2cm, Stage IV, mets, ER+/PR+, HER2+
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Dec 18, 2007 08:18PM , edited Dec 18, 2007 08:19PM by luckywife

Bethie, I am being scheduled to put an omaya port inside the skull so chemo can be administered easily. This lumbar puncture thing was just to ensure that I don't react to the chemo before I go through surgery.  Neuro surgeon recommended that to avoid an unnecessary surgery. Made sense so went through it. I seem to be feeling fine so far.

LuAnn, I know reading too much is what we are often guilty of but the onc. too has given some realistic picture with the hope if it works. I have been lucky in the past. Hope for that again.

Thanks so much for your kind words.

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Dec 18, 2007 09:54PM LuAnnH wrote:

Sounds like your onc is very good and on top of things.  I will be praying for you. 

LuAnn -- Dx 7/2/2006, IDC, 2cm, Stage IV, mets, ER+/PR+, HER2+
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Dec 19, 2007 12:48AM AusAla wrote:

I agree with LuAnn.  I am praying for completely successful treatment.

Are the three of us just not sleeping tonight???  Goes with the territory...bc=sleepless nights! 

Hugs,

Bethie

"I don't want to be in a battle, but waiting on the edge of one I can't escape is even worse! Pippin, Lord of the Ring: Return of the King Dx 5/13/2002, IDC, 2cm, Stage IV, Grade 3, 3/17 nodes, mets, ER+/PR+, HER2+
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Mar 11, 2014 08:17AM Amirrimaamir wrote:

Hi ,

I just came across your Post, and this is exactly what my sister is going through.

I know you posted this 7 years ago, but please reply to my post if you see this and let me know what was your experience with this treatment.

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Mar 11, 2014 08:35AM Bestbird wrote:

I am so sorry to hear what you are going through.  I recently conducted extensive research (below) for a friend with the same diagnosis.  I apologize for the length, and hope it may be of some help!

  1. The first thing to be recommended is to determine whether the fluid can be checked for ER, PR and Her2 status,.  It’s possible the cancer is Her2+ and if it is, intrathecal trastuzumab may be used.

Overexpression of HER-2 has been associated with an increased incidence of CNS metastasis compared to other molecular subtypes [24-26]. 

Here's news of a complete response in HER2+ leptomeningeal carcinomatosis from breast cancer with intrathecal trastuzumab. We prospectively assessed functional outcome and toxicity of administering trastuzumab directly into the cerebrospinal fluid of a patient with leptomeningeal carcinomatosis (LC) and brain metastases from HER2+ breast cancer that had already been treated with other intrathecal chemotherapy, with no benefit. Upon signed informed consent, weekly lumbar puncture with administration of trastuzumab 25 mg was begun to a 44 year-old women with metastatic breast cancer (lymph node, bone, lung, and liver involvement) previously treated with tamoxifen, letrozole, anthracyclines, taxanes, capecitabine, intravenous trastuzumab, and lapatinib. She received 67 weekly administrations of intrathecal trastuzumab with marked clinical improvement and no adverse events. She survived 27 months after LC diagnosis. A complete leptomeningeal response, with no evidence of leptomeningeal metastasis at necropsy, was achieved.

From a different source: For women with HER2 + leptomeningeal disease there is increasing and seemingly successful use of intrathecal Herceptin both with chemo and alone. Many of these successes have been reported as case studies, although there is one small trial that was done in Spain with promising results. Several trials are now underway to verify these results in larger numbers of women. In these case studies, low dose (15mg-40mg weekly) and high dose (100mg-150mg weekly) Herceptin have been used. High dose appears 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 on a forum wrote this about another lady: “The wonderful doctors at UCLA really jumped on it and the same day she was given a spinal injection of methotrexate. She didn't like that so off she went to surgery where they installed an Ommaya reservoir and ever since has been getting Herceptin through it every 3 weeks. In addition she takes Tykerb. And here is the miracle part...no further sign of lepto mets and she is doing very well today.” (I’ve seen some favorable info regarding Tykerb and LM).

  1. Determine whether there is bulky disease and/or elevated ICP (IntraCranial Pressure). If there is, you’ll probably need radiation and/or another way to relieve CSF CerebroSpinal Fluid) outflow obstruction. Relief of CSF outflow obstruction by CSF diversion has been shown to improve functional status, and is likely to prolong survival in these cases [39]. A VentriculoPeritoneal Shunt (VPS) procedure 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 [39]. For those in whom a surgical procedure is not desired or tolerable, palliative RT is also effective in relieving CSF outflow obstruction, although the duration of benefit is variable [40].

  2. Consider Radiation.

RT (Radiation Therapy) is a palliative treatment or adjunctive therapy with IT or IV chemotherapy. A short course of fractionated RT may be delivered that is generally tolerable, and may be useful to relieve pain in sites of nerve root compression. RT is especially important to consider in cases with bulky leptomeningeal disease, as the penetration of IT chemotherapy is poor in these instances [41].

  1. Consider Chemo:

  • Methotrexate  (Leucovorin can be used as a rescue after dose-intense Methotrexate therapy to lessen and counteract the effects of Methotrexate toxicity and other folic acid antagonists.)

  • Cytarabine aka DepoCyt (cytosine arabinoside) or Ara-C

  • Thiotepa, the second-line agent after Methotrexate and Cytarabine, is cleared from CSF within minutes and has survival curves similar to those of MTX with less neurologic toxicity than Methotrexate.

  • Less Common Drugs: Temodar, Thiotopa and Gemzar

  • Xeloda  Long-term clinical response in leptomeningeal metastases from breast cancer treated with capecitabine monotherapy http://www.ncbi.nlm.nih.gov/pubmed/16800978  and  http://www.ncbi.nlm.nih.gov/pubmed/17611719 

  • In addition, there have also been reports of remissions with Capecitabine (Xeloda),Tamoxifen, Arimidex, Femara, Aromasin and Megace. While Xeloda is an oral chemotherapy, the other five are hormonal therapies for ER+ leptomeningeal disease.

  1. Consider IV (IntraVenous) vs. IntraThecal (IT) Administration of Chemo:

IV chemotherapy with high-dose methotrexate likely improves survival over radiation alone, and has shown a trend toward improved overall survival compared to IT chemotherapy with improved tolerability [11]. The main advantage of IV chemotherapy is that it does not cause chemical meningitis and has a lower risk of leukoencephalopathy compared to IT treatment. However, IV methotrexate may produce systemic side-effects such as mucositis, bone-marrow suppression and nephrotoxicity. IV methotrexate requires inpatient monitoring.

Intrathecal chemotherapy is 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 being 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.  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.  Complications resulting from intrathecal chemotherapy are frequent (infections) and can be serious.  (Note: people with an Omaya reservoir reported no pain from it.)

IT chemotherapy is an alternative to IV methotrexate. One advantage over IV administration is that IT treatments may be given in the ambulatory setting, typically every 2 weeks. Liposomal cytarabine, methotrexate and thiotepa are the most commonly administered IT chemotherapeutic agents. IT chemotherapy is mechanistically attractive, because it circumvents the pharmacologic challenges of drug delivery beyond the blood-brain barrier, and it is less myelotoxic than systemic chemotherapy. This makes it an attractive option for heavily pretreated individuals or those receiving IV chemotherapy for concurrent active systemic disease.

 However, IT chemotherapy still has limitations related to distribution and toxicity. The distribution of IT chemotherapy is dependent on normal CSF circulation. As mentioned above, up to 46% of LM patients have evidence of CSF outflow obstruction. Therefore, prior to administration, individuals receiving IT chemotherapy should have no clinical evidence of CSF outflow obstruction or elevated ICP. The most common toxicity of IT chemotherapy is ventriculitis/arachnoiditis, occurring in 10-23% of cases [13,42,43]. This is a non-infectious ‘chemical meningitis’ that occurs in response to IT chemotherapy. It can be extremely uncomfortable, resulting in severe headaches, nausea and vomiting. Pretreatment with dexamethasone substantially reduces the incidence of chemical meningitis. Other rare but serious toxicities of IT therapy include: leukoencephalopathy (7.5%), and bacterial meningitis (3.75%) associated with the presence of an intraventricular reservoir [42].

 There is no direct evidence that intrathecal chemotherapy, which is introduced directly into the cerebrospinal fluid, is better than intravenous chemotherapy, which is given through the veins. Intrathecal therapy is generally reserved for women whose systemic disease is under reasonable control and who are in good physical condition.

From: http://brainmetsbc.org/en/content/leptomeningeal-metastases

  1. Consider a Clinical Trial:

There is a Phase 2 clinical trial for mbc with leptomeningeal metastasis using high-dose Methotrexate and Liposomal Cytarabine at: http://www.cancer.gov/clinicaltrials/search/view?cdrid=657112&version=HealthProfessional

 Another Phase 2 trial using a monoclonal antibody: http://clinicaltrials.gov/ct2/show/NCT00445965?term=Leptomeningeal+metastases&recr=Open&rank=12

A Phase 1 clinical trial using a monoclonal antibody: http://clinicaltrials.gov/ct2/show/NCT00089245?term=Leptomeningeal+metastases&recr=Open&rank=11

  1. Read These Encouraging Stories!

 One lady on a forum wrote, "I did confront my oncologist a couple of weeks ago to tell him that I am feeling quite anxious about the statistics concerning LM and he gave me more faith by telling me that he had a couple of patients who are still going after 4 and 5 years!!!!! So technology has certainly improved lately."

 One year ago one personwrote, "I have leptomenginal mets. I have had six doses of intrathecal chemo through spinal taps for them last summer.  The chemos were depocyt and methotrexate."

 Another lady on the forum wrote, "I was diagnosed with LM about 26 months ago. I have an ommya port and had depocyte injected for about 4 months.  I also had decadron which made my legs so weak.  I started with almost blacking out if I sat to long and then got up.  That was fluid  build up in brain.  Finally in Dec.2011 the Dr. decided to put a shunt in to drain fluid. I cannot use ommya any more and I am now on gemcitabean.  So far so good - feeling good.  Tell her my story to give her hope, because when I was diagnosed with lepto over 2 years ago my Dr. told me to get things in order.  Once I got off those steroids my legs got stronger.  I look like a new person, now and feel like a new person."

 One lady wrote that instead of having the Ohmaya port, she opted to have radiation on an area of her spine where there was a cluster of tumor cells Then she was put on Xeloda, an oral chemo, and Avastin, which now has been de-approved for treating breast cancer.  She is now doing well. Another person had two treatments of Methotrexate through a spinal tap (intrathecal) and then began Xeloda  (it is believed to cross the blood brain barrier). Her symptoms were headaches and nausea and she is doing much better a few months later.

One person indicated that his wife just found out that the brain responded to the Xeloda/Tykerb/Radiation and is NED.

People also said that the Omaya port was not painful and that there were no side effects from DepoCyt (Cytarabine)-just the steroids.

The first thing to be recommended is to determine whether the fluid can be checked for ER, PR and Her2 status,.  It’s possible the cancer is Her2+ and if it is, intrathecal trastuzumab may be used.

Overexpression of HER-2 has been associated with an increased incidence of CNS metastasis compared to other molecular subtypes.

For women with HER2 + leptomeningeal disease there is increasing and seemingly successful use of intrathecal Herceptin both with chemo and alone. Many of these successes have been reported as case studies, although there is one small trial that was done in Spain with promising results. Several trials are now underway to verify these results in larger numbers of women. In these case studies, low dose (15mg-40mg weekly) and high dose (100mg-150mg weekly) Herceptin have been used. High dose appears 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.

 Seven suggested steps:

  1. Determine whether there is bulky disease and/or elevated ICP (IntraCranial Pressure). If there is, you’ll probably need radiation and/or another way to relieve CSF CerebroSpinal Fluid) outflow obstruction. Relief of CSF outflow obstruction by CSF diversion has been shown to improve functional status, and is likely to prolong survival in these cases [39]. A VentriculoPeritoneal Shunt (VPS) procedure 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 [39]. For those in whom a surgical procedure is not desired or tolerable, palliative RT is also effective in relieving CSF outflow obstruction, although the duration of benefit is variable [40].

  2. Consider Radiation.

RT (Radiation Therapy) is a palliative treatment or adjunctive therapy with IT or IV chemotherapy. A short course of fractionated RT may be delivered that is generally tolerable, and may be useful to relieve pain in sites of nerve root compression. RT is especially important to consider in cases with bulky leptomeningeal disease, as the penetration of IT chemotherapy is poor in these instances [41].Consider Chemo:

  • Methotrexate  (Leucovorin can be used as a rescue after dose-intense Methotrexate therapy to lessen and counteract the effects of Methotrexate toxicity and other folic acid antagonists.)

  • Cytarabine aka DepoCyt (cytosine arabinoside) or Ara-C

  • Thiotepa, the second-line agent after Methotrexate and Cytarabine, is cleared from CSF within minutes and has survival curves similar to those of MTX with less neurologic toxicity than Methotrexate.

  • Less Common Drugs: Temodar, Thiotopa and Gemzar

  • Xeloda  Long-term clinical response in leptomeningeal metastases from breast cancer treated with capecitabine monotherapy http://www.ncbi.nlm.nih.gov/pubmed/16800978  and  http://www.ncbi.nlm.nih.gov/pubmed/17611719 

  • In addition, there have also been reports of remissions with Capecitabine (Xeloda),Tamoxifen, Arimidex, Femara, Aromasin and Megace. While Xeloda is an oral chemotherapy, the other five are hormonal therapies for ER+ leptomeningeal disease.Consider IV (IntraVenous) vs. IntraThecal (IT) Administration of Chemo:

IV chemotherapy with high-dose methotrexate likely improves survival over radiation alone, and has shown a trend toward improved overall survival compared to IT chemotherapy with improved tolerability [11]. The main advantage of IV chemotherapy is that it does not cause chemical meningitis and has a lower risk of leukoencephalopathy compared to IT treatment. However, IV methotrexate may produce systemic side-effects such as mucositis, bone-marrow suppression and nephrotoxicity. IV methotrexate requires inpatient monitoring.

Intrathecal chemotherapy is 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 being 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.  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.  Complications resulting from intrathecal chemotherapy are frequent (infections) and can be serious.  (Note: people with an Omaya reservoir reported no pain from it.)

IT chemotherapy is an alternative to IV methotrexate. One advantage over IV administration is that IT treatments may be given in the ambulatory setting, typically every 2 weeks. Liposomal cytarabine, methotrexate and thiotepa are the most commonly administered IT chemotherapeutic agents. IT chemotherapy is mechanistically attractive, because it circumvents the pharmacologic challenges of drug delivery beyond the blood-brain barrier, and it is less myelotoxic than systemic chemotherapy. This makes it an attractive option for heavily pretreated individuals or those receiving IV chemotherapy for concurrent active systemic disease.

 However, IT chemotherapy still has limitations related to distribution and toxicity. The distribution of IT chemotherapy is dependent on normal CSF circulation. As mentioned above, up to 46% of LM patients have evidence of CSF outflow obstruction. Therefore, prior to administration, individuals receiving IT chemotherapy should have no clinical evidence of CSF outflow obstruction or elevated ICP. The most common toxicity of IT chemotherapy is ventriculitis/arachnoiditis, occurring in 10-23% of cases [13,42,43]. This is a non-infectious ‘chemical meningitis’ that occurs in response to IT chemotherapy. It can be extremely uncomfortable, resulting in severe headaches, nausea and vomiting. Pretreatment with dexamethasone substantially reduces the incidence of chemical meningitis. Other rare but serious toxicities of IT therapy include: leukoencephalopathy (7.5%), and bacterial meningitis (3.75%) associated with the presence of an intraventricular reservoir [42].

 There is no direct evidence that intrathecal chemotherapy, which is introduced directly into the cerebrospinal fluid, is better than intravenous chemotherapy, which is given through the veins. Intrathecal therapy is generally reserved for women whose systemic disease is under reasonable control and who are in good physical condition.

From: http://brainmetsbc.org/en/content/leptomeningeal-metastases

  1. Consider a Clinical Trial:

There is a Phase 2 clinical trial for mbc with leptomeningeal metastasis using high-dose Methotrexate and Liposomal Cytarabine at: http://www.cancer.gov/clinicaltrials/search/view?cdrid=657112&version=HealthProfessional

 Another Phase 2 trial using a monoclonal antibody: http://clinicaltrials.gov/ct2/show/NCT00445965?term=Leptomeningeal+metastases&recr=Open&rank=12

A Phase 1 clinical trial using a monoclonal antibody: http://clinicaltrials.gov/ct2/show/NCT00089245?term=Leptomeningeal+metastases&recr=Open&rank=11




Dx 10/6/2011, IDC, Left, Stage IV, ER+/PR+, HER2-
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Mar 12, 2014 05:22AM chele wrote:

I have no experience with any of it, but wanted to let you know I'm wishing the best for you.

Chocolate for Breakfast! Mets to lots of bones, sternum, marrow, both lobes of liver, and 5 tumors in my brain. Dx 3/11/2011, IDC, Stage IV, mets, ER+/PR+, HER2- Dx 11/2/2009, IDC, 2cm, Stage IIb, Grade 2, 3/9 nodes, ER+/PR+, HER2-
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Mar 12, 2014 01:04PM poochiewoochie wrote:

Luckywife was last seen in 2008. She might not reply to your post is what I'm saying.