Cancer in cerebral spinal fluid. My saga.
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
Comments
-
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
0 -
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!
0 -
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.
0 -
Sounds like your onc is very good and on top of things. I will be praying for you.
0 -
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
0 -
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.
0 -
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!
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).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].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-CThiotepa,
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 GemzarXeloda 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/17611719In 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
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=HealthProfessionalAnother Phase 2 trial using a monoclonal
antibody: http://clinicaltrials.gov/ct2/show/NCT00445965?term=Leptomeningeal+metastases&recr=Open&rank=12A Phase 1 clinical trial using a monoclonal
antibody: http://clinicaltrials.gov/ct2/show/NCT00089245?term=Leptomeningeal+metastases&recr=Open&rank=11Read 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
The
and that there were no side effects from DepoCyt (Cytarabine)-just the
steroids.
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:
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].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-CThiotepa,
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 GemzarXeloda 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/17611719In 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
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=HealthProfessionalAnother Phase 2 trial using a monoclonal
antibody: http://clinicaltrials.gov/ct2/show/NCT00445965?term=Leptomeningeal+metastases&recr=Open&rank=12A Phase 1 clinical trial using a monoclonal
antibody: http://clinicaltrials.gov/ct2/show/NCT00089245?term=Leptomeningeal+metastases&recr=Open&rank=110 -
I have no experience with any of it, but wanted to let you know I'm wishing the best for you.
0 -
Luckywife was last seen in 2008. She might not reply to your post is what I'm saying.
0 -
Today I had my 6 month scan and every thing went well ECEPT for my brain scan, which has been NED in December 2019 shows maybe “Abnormal density within a remote sulcus of high rightparietal love, worrisome for leptomening carcinomatosis” My Oncologist has ordered a MRI - says there is a cloud over the parietal lobe.
Any one have this happen - any and all suggestions welcome
0
