Brain Mets Sisters
Comments
-
hi everyone,
I'm posting after a short depressive hiatus. I also have multiple brain mets. I started out with 4 in Nov 2014. Had stereotactic rads which shrank them until my scans in July 2015. They started growing and I now have 11 lesions. I asked why they started growing after they shrank!!!! No answer. So RO said I should do WBR. I said no thanks. If they grew with SRS then why do WBR??? So my MO put my on a clinical trial with Neratinib and Xeloda. Who knows if it's working. I'm in cycle 4. My first set of scans showed stable, no change. My second set of scans are in 2 weeks. I'm holding my breath. As long as I'm stable, I can stay on the trial. Honestly, I'm avoiding WBR bec I'm scared. I think I'm the only one on this trial in my area. There are not many on the trial. Neratinib works like tykerb. I get scans every 6 weeks on the trial. Hate that. So I feel like I'm living in 6 week gulps.
I feel fine except for depression. This really takes a toll on ones body, mind and soul
Can you share the link on the MD Anderson article?
0 -
the problem is that sometimes the lesions shrink sometimes they grow up and sometimes new ones pop up. WBR is not a quick fix or cure. it is recommended now not to do them prophylactic.
0 -
Who is having lumbar punctures to look for markers of disease in the spinal fluid? I haven't heard it mentioned so I'm wondering why not as it might increase other treatment options.
Your thoughts
0 -
I had a few months ago and was negative. New developments may warrant another tap. In and out procedure same day. I did get quite the headache for a few days. Said it was from the tap. You may want to talk to onc about avoiding the headache. The tap was easy
0 -
Ann,
My MO won't do it unless I show symptoms. Arg. I'm going to ask my clinical trial MO. But it sounds scary. Not sure I'm up for it. Plus do you need to get a series of them to show accurate results? I think I read somewhere that just doing one doesn't mean the disease is not there. Could just be that the sample missed it. Is this true?
0 -
My neuro-onc is good about letting me get lumbar punctures. A single cerebrospinal fluid evaluation is about45% accurate for diagnosis of leptomeningeal spread. Three draws are 90% accurate. 12-16 draws are like 96% accurate.
That said, they don't do them regularly as standard of care. Brain mets docs at MD Anderson told me though that the more you look for circulating tumor cells in the spinal fluid the more likely you are to find them.
My neuro-onc said she feels comfortable diagnosing LM based on other bio markers even if cells arent found.
There is a new case study on IT Herceptin that was just published. If you look at the lower-left of page 4, above table two, the docs mention that even in a patient with LM they never did detect CTCs, just elevated calcium. Very useful for us to know.
Intrathecal trastuzumab: immunotherapy improves the prognosis of leptomeningeal metastases in HER-2+ breast cancer patient
http://www.immunotherapyofcancer.org/content/pdf/s...
Why do I look? Because, though not standard of care, I believe that catching CSF spread might help get targeted therapies via an ommaya port which seems to be more effective (in spite of this case study which used a rather lame protocol) than the current options of systemic therapy -- which only reaches around 2-5% concentration in the spinal fluid.
I have more LM and related notes that I can share.
Ann
0 -
thanks ann
0 -
I met with my brain radiation oncologist surgeon and she said I had 10 brain tumors. There is a larger one thought perhaps to be a tumor growth or scar tissue from the Gamma Knife done early September 2014. At that time I had 4 tumors zapped, and for almost a year my brain mri clear. Now I've a crop of tumors and the doc said if there are 10 there are probably 20! She didn't give me much hope. She refuses to do anything but whole brain radiation and said I fall at the low end of the poll so it most likely wouldn't work for me.
Such good news! I'm getting a second opinion a OHSU in Portland, Oregon. I figured f they aren't curing me then working toward quality of life. They don't give me, without treatment, but a few months to live. I said to my oncologist that I wanted to continue on the Herceptin and the lapabinap (sp) that goes through the BBB. I had just completed lower back radiation that went through my small intestents and I came down with c-diff that just about did me in. At first I thought it was diarrhea due to radiation treatment. I'm glad I mentioned it to my oncologist as she got me tested right away for it and sure enough I have a stomach bacteria infection that hit me hard. I kept throwing up the pills so they put me in the hospital for about 4 days to stabilize me and then tried the pills again and again I couldn't keep them down along with stomach painful spasm. Thus, I had to do home flagle IV treatments for another week. Finally, I'm normal and back on Herceptin, but adding the little everyday pill that will pass the BBB.
Already, I have weakness in my right leg, and wondering if it's due to the brain, or even possible lower spine mets? I'm feeling a bit pressure in my head, feeling a bit wobbly so I have to focus when I walk. I feel it getting worse but hopefully the lapabinp pill works fast along with continuing Herceptin. I no longer will be on Perjeta.
Brain mets is scary. I do not like the idea of being dependent or losing motor control. I don't want to lose my mind. I'm praying God will help me tolerate this new pill as I'm not too good tolerating meds. I'm on one DEX a day along with Boswella although from what I read, I need to be on higher doses. I'm going into the naturopathic college for vitamin infusion starting tomorrow as I lost a lot of weight recently especially over radiation do to C-Diff.
It's encouraging that so many of you have lived through it at least more than a few months. I'm just thinking now, I hope I live until Christmas. I'm not scared of dying, just want to be strong for my daughter's upcoming jaw surgery and her recovery. I'm a Christian so I have peace about what happens after this body goes knowing one day there will be a resurrection. My life and times are in God's hand.
I standing strong, and my mind still together...thankfully. I have so many questions about the drug lapabep that passes the bbb and if any of you took it...side effects and etc.
Thanks for any encouragement.
0 -
Hindsfeet,
Sorry for your brain progression. I too recently progressed to brain & liver mets. I was vomiting every 1/2 hour for over a week and found my pituitary gland was not working and they found a 2 cm tumor which I had surgery on. I had a hard time keeping pain meds down. A nurse came in & got me on Diladid which you can desolve under your toungue without much water. This helped get me a few hours of sleep.
I pray God keeps you pain free and you get quality time with your familily. Maybe hopspice can keep you as comfortable as possible.
Terri
0 -
I think it is important for us brain Mets gals to participate in clinical research trials or to press for new care regimes under the FDA Investigational New Drug program. Our prognosis isn't good on the whole with CNS involvement and over and over I read about how little work has been done in this this area.
Consider this: in the CNS brain mets behave as benign tumors, not invading brain tissue but growing on top of it. It is the compression of structures that causes the issues.
Anyone with HER2 disease should consider IT therapy at some point, arguing for it under compassionate care grounds. Legally they HAVE to comply with your request.
For any of us though, the FDA Investigational New Drug program can get you access to any drugs (and give your doctor political cover) to have worked for patients in clinical trials -- even if the studies aren't done and the drug not approved yet. If it is shown to positively affect disease and not kill patients then it can be made accessible. Immunotherapy, chemo, novel ways of getting drugs into the CNS (rather than just hoping the drug particles are small enough) -- can all be made available and insurance has to pay for them I have heard. Everything else is just politics
I have contacted an attorney and a cancer treatment consultant to have support in this area if needed.
I have been advised to fight like my life is on the line because it is
0 -
Thanks Ann for the post. I like the fight you have in you. It's inspiring! I've learned a lot from your posts and appreciate the valuable info you dispense.
Btw: How are your headaches? Hope you are feeling stronger.
0 -
dear hindsfeet,
My heart just breaks reading your post. I'm so sorry to hear about your progression. I don't understand why your onc says you "fall at the low end of the poll" and WBRT won't work for you??? How long have you been on the lapatinib?
You've been through so much. I hope something is working to help you feel better. I sure hope lapatinib starts working fast for you, too.
Sending warm regards and hugs to all my brain metsers sisters. I may not post often, but I feel a stab each time I hear of brain mets progression. Xo letranger
0 -
What it IT? I would asked for it but not sure what I'm asking.
I'm not on lapatinib yet. They ordered it last Wednesday so I should be getting my first meds this week plus continuing Herceptin. Even if I could do WBR I wouldn't. The doc said because of my new progressions, age, I'm not keeping food down well, and I've gotten pretty sick...also ill with c-diff. I'm not strong enough to do it. The reason I wouldn't is because if there is going to be a side effect ... it is going to happen to me. I won't gamble on dementia or loss of motor control. I rather go out now than become up able to take care of myself.
I am getting a second opinion. I went in for a vitamin infusion today, anWd trying to eat more. I'm limited at what I can and due to radiation to lower back that went cross my lower intestants, I've other issues as well. I'm also struggling with neuropathy pain in feet and legs since radiation a few weeks back.
However, I'm at peace, and trusting God's goodness even in all of this sickness.
0 -
hindsfeet,
Have your docs suggested Xeloda along with lapatinib? It may also cross BBB. It does have it's share of side effects though.
0 -
your answer to "what is IT?:
Taken from Wikipedia:
"Intrathecal administration is a route of administration for drugs via an injection into the spinal canal, more specifically into the subarachnoid space so that it reaches the cerebrospinal fluid (CSF)..."
You would need an omaya reservoir placed at the top of your head or a lumbar device at the top of your spinal cord, from what I understand. Drugs could then reach the CSF. I've heard it done with herceptin for leptomenengeal disease.
0 -
Wanted to mention that in one of my recent reports, my neuro doc recommended perfusion MRI of Brain. From what I could understand from his explanation, this type of MRI could tell if there was vascularization to the lesion, indicating it was cancerous because it needed blood supply to grow. Or lesions without blood flow may not be cancerous.
Maybe someone has a better explanation.
But has anyone has this type of MRI done?
0 -
letranger - The past few MRIs I've had have had the perfusion technique and it is exactly as you describe, where they are trying to identify vascularization to the lesions. I can't tell any difference in how they actually perform the exam, so I think it might all be done in the computer post processing. Here's what it says from my latest report...
TECHNIQUE:
Multiplanar, multisequence MRI of the brain was performed using a 3T
MR scanner prior to and following intravenous contrast
administration.
Perfusion: Dynamic contrast enhanced perfusion and dynamic
susceptibility contrast enhanced perfusion performed using a split
bolus technique. Permeability (k trans) and cerebral blood volume
maps generated on a separate, stand alone workstation. Relative
cerebral blood volume (rCBV) determined using region-of-interest
analysis compared to control parenchyma.
0 -
Hindsfeet - sending my best wishes to you. ((hugs))
0 -
Agness, could you give me the source of information that says that mets to the brain do not invade the brain tissue but sits on top much like a benign tumor? I also want to contact the Compassionate Care Act FDA. Not sure how to go about it to get the IT therapy.
Thanks for the info.
0 -
I'll send you a PM
0 -
Here is a link that explains different ways to access new drugs in development, including the FDA Investigational New Drug program.
http://www.patientadvocate.org/resources.php?p=102
CancerTreatmentNavigator.com can help build the medical and scientific case for accessing developing drugs.
I don't have a great scientific source for the brain tumors crowding out normal tissue for you but I'm looking for one. It was in a book I read but it doesn't have sources. I will keep looking for a better source for our purposes. In many, many cases patients are describing lesions growing on the brain and putting pressure on other structures (my cerebullar tumor was like that) -- but maybe there are type of breast cancer that invade more
0 -
"Brain metastases usually are more encapsulated and easily removed than primary glial tumors"
Bottom of page 13
http://www.phys.mcw.edu/documents/PDF/Background Papers/Lassman.pdf
0 -
Looks like I am joining this group! Yesterday's PET scan showed a probable metastasis on the Frontal Lobe. Am getting an appointment for an MRI and with a neurologist/neurosurgeon to help decide how to treat. My oncologist is leaning toward surgical removal if it is just the one met. Fingers, toes, etc crossed that there aren't any more.
0 -
borscheid - so sorry for your likely progression. Ask about having rads before surgery, it has been shown in early studies to reduce the risk of spread. Cutting into active tumors is known to spread disease. This isn't standard of care yet (rads first) but it a developing protocol out of research
0 -
Hey Lori - sorry to hear about your brain met, I'll be crossing fingers and toes for you as well. Keep us posted.
0 -
borscheid - sorry to hear of the brain met. Hoping your treatment plan is as easy as can be.
Question:
Has anyone had a biopsy of a brain met? I mean, I have not had any removed, but was wondering if the docs can do some sort of needle biopsy of one of my mets (while still entact to my brain! lol) for genetic analysis for other drugs that it might respond to. All of my lesions are under 15 mm so far so wondering if it is at all possible.
Thanks in advance.
0 -
Many here have donated . Thank you !........Wandering around and cheerleading again
Donate today, make a difference directly in all our lives. By supporting BCO, we support each other. Thanks and Hugs
https://community.breastcancer.org/forum/110/topic/834331?page=1
Link to the mainboard donation page
0 -
I my case my lesion was so small it made no sense to biopsy it. They just removed it. They would have had to open my head anyway to do the biopsy so decided to get all the abnormal tissue out.
If you have more than one lesion and have had previous radiation, they might not want to biopsy it either. One changing site might only be scar tissue and another could be cancer. They wouldn't want to be wrong because they didn't biopsy the right spot.
0 -
Thanks, leftfoot. Sounds like a biopsy of the brain is complicated.
Arg
0
