Brain Mets Sisters
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Congrats Lori!!
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Thanks! I am taking several supplements: coQ10, Vitamin D, B12, calcium/magnesium/zinc and potassium, and alpha lipoic acid (for my neuropathy) Will ask about omega 3/DHA. (Have to make sure it doesn't interact with the warfarin. Can't wait for the effects of the dexamethasone to go away...especially the jitters and swelling and the wacky effects on my blood - too thin.. The thrush is finally under control. Thank goodness. All in all though, I feel pretty good!
Barb, I am right there with you on having pretty much every treatment.
Ann, hope you are feeling better fast and have good results on your scan.
Hugs and blessings!
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Hi everyone. .wondered if some of you would kindly share some experiences. .first question is can anyone advise me with regards to the fatigue element of WBRT.my mum completed her treatment on the 23rd of oct,5 sessions and seems the effects have really kicked in.she get tired just going to the loo.any idea if this is normal and how long this extreme tiredness lasts for?.is there something we should do with regards to exercise??At the moment mum sits in one place for a long period of time..this cant be good.also can you suggest any good suppliments that you feel are helping boost energy.Mums diet isnt the best either.shes just tapering off steriods at the lowest dose..any advice would be greatly appreciated xx
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Angels21
I had WBRT summer 2014 and tiredness peaked around 5 weeks after. I was able to go back to work part time in Sept and full time in October I think. Exercising is really tough but maybe just a short supported walk would get her some fresh air. This fatigue will pass. As to diet and supplements, I occasionally take something called Pomi-T which contains Pomegranate, Turmeric, Green tea and broccoli- originally for prostate cancer but my onc is OK with it. Some say you shouldn't take whilst on chemo so do check out with your onc first. Otherwise I just try to eat healthily - less red meat, more dish and vegetables, little dairy, everything in moderation
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fatigue is normal and can last for several months after treatment is over. I'll let someone who has had WBR speak to that.
I would recommend calling her doctored and getting a referral for PT. they can taylorvit to her and it is a good way to maintain strength while recovering. It can also help with recover/ balance. I did Pt after my craniotomy and it helped. If you go to PT make sure they understand the situation so they don't tire her completely out.
Hope she starts to feel better soo
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I found this very interesting, melanoma patients with brain mets have reported getting SRS versus WBR for up to 30 lesions. That seems different than what our members are hearing.
http://www.melanoma.org/find-support/patient-commu...
For anyone coming to our thread worried about brain mets, here are a couple links to check out about symptoms. The gals here will tell you though that symptoms can really vary and sometimes are missed by docs.
http://www.cityofhope.org/blog/cancer-recurrence-s...
http://www.brainmetsbc.org/en/content/talking-abou...
Here's s link that discusses the types of neurological testing we undergo with brain mets. You can do some of these in front of a mirror to see how your facial muscle control is, the balance ones can also be done at home. Some of the tests are best done with another person such as touch your nose then touch the moving finger.
http://www.abta.org/brain-tumor-information/diagno...
-Ann
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Hey all. I registered on the Metastatic Breast Cancer Project today. This initiative through Dana Farber in Boston hopes to help advance treatment of stage IV breast cancer patients.
I was thinking that us BC brain mets gals often get overlooked but if we can make a good showing then maybe we can get their attention and they will do more. Registration was really easy to do and only took two minutes. Please pass it on as well.
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Hi guys,
My mom has been recently diagnosed with LeptoMeningeal Metastases in the brain with communicating hydrocephalus. She had been diagnosed with breast cancer (ER+/PR+, HER2-) four and half years back. She had an NED status until September when this disease reoccurred at the worst possible place in her body. Surgery is not possible and her doctors think chemotherapy is a better option than WBRT(Radiation). She has floating cancer cells - no tumors. Her tumor markers (CA 15-3) were on border when the relapse of the disease was diagnosed. MRI scan and Lumbar puncture confirmed the presence of cancerous cells in the Leptomeninges. Symptoms like Veritgo/Migraine like headaches have been there since April this year. Body balancing issues have been there since one year. She also had cataract operation of both her eyes last year - dunno if the cataract had any connection with the disease?
She had been treated with Intrathecal Methotraxate (MTX) alone initially and later on Xeloda was added to her treatment. She has completed 12 doses of MTX and two cycles of Xeloda till now. Initially, MTX took a tool on her body. She had to be hospitalized after her first MTX dose because of seizure like instances and dehydration due frequent vomiting and loose motion. The seizure like events were very frightening for us to deal with. I had never seen my mom in such a state! Seizures and other side effects(vomiting and loose motion) of MTX were brought under control through medication. After her sixth dose of MTX, Xeloda (Two weeks On and One week Off) was added to her treatment. Xeloda has caused a lot of water retention in her body, minor hair loss, frequent urination, anxiety, sleepiness, few black patches on her skin and loads of cough. Other than that she hasn't had adverse side effects of Xeloda like the hand-foot syndrome till now. During her one week break she has recovered well and she feels good as well as she is good spirit. She has started her third cycle of Xeloda today- 1500 mg twice a day.
Recently she has started complaining of double vision. Also, she feels weak and tired after doing any activity. She also sometimes complains of feeling of emptiness in her head - as if nothing is there inside her brain and also complains of cramps which start from her brain and go down to her hand and spine. She also complains having trouble with concentration and focus. She is unable to meditate. She does her yoga exercises though. Other than that she has been doing fairly well. Her body balancing issues are gone, her Veritgo/Migraine like headaches have gone, vomiting has stopped completely...all the initial symptoms seem to have been brought under control. Overall she feels good and is in good spirits. Does this also mean that the disease is under control and it has not progressed?
We have done three more lumbar puncture tests or the CSF Cytology tests in the last two and half months, unfortunately the cancer cells are still there in her cerebrospinal fluid (CSF)
. Are there any tests through which we can do a comparative analysis of the effectiveness of the treatment given to her - like a before & after study??? Is there any way to find out the exact number of floating cancer cells in her cerebrospinal fluid (CSF). What kind of tests does your doctors ask you to do?Is anyone getting medication to reduce the long term toxicity of Intrathecal Methotraxate (MTX) or Xeloda??
Is anyone using Cannabis to treat their brain mets? Is it effective?
Apologies for the long post:)
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Hi Priyank - sorry for your mother's health issues. That is really rough. Did she really have LM as the first site of mets? It is very rare indeed if that happened. Ugh.
In response to your question about testing circulating tumor cells I do know a reference but you need the full study to read it all. The Landscape trial (2013) looked at treatment of HER2 brain Mets with lap/cap (Tykerb/Xeloda). The other subset that was studied was whether they could track CTCs in the spinal fluid like they can the blood and it was determined that they can. Additionally it was noted that they could see the response of various treatments on the cells. It was mentioned that this was early/new findings and so they didn't yet know the significance of them findings in clinical practice.
Here's the brief on PubMed but you would want your doc to look up the whole study report and maybe even talk to French docs about it.
Circulating tumor cells and brain metastasis outcome in patients with HER2-positive breast cancer: the LANDSCAPE trial.
Has your mother had her cancer cell line tested by Foundation One? It might help point out other options. I had my brain tumor tested this Fall and learned that I had some unique mutations.
Where are you located?
Ann
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Hi Agness,
Thank you for your prompt reply! My mom was diagnosed with Invasive Lobular Carcinoma 4 and half years back. 33/40 nodes were positive. Dunno if the nodes count as mets?? If not then yes Leptomeninges are the first site of her breast cancer mets. Also, thnx for sharing the link on circulating tumor cells and brain metastasis. I live in India and my mom's cancer cell line has not been tested yet. Maybe because she doesn't have a tumor in her brain?? Will certainly discuss about it with my mum's doc next week.
Thnx:)
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Congrats Lori! So glad you got through WBR so well!
Keesmom, I have a ruptured implant in my only remaining breast. Talked to the plastic surgeon about it and he said if it wasn't causing me any pain I should just leave it. He said the surgery to remove it isn't that simple. I had hoped they could just pull it out under local anaesthesia but he said they would have to put me totally under and then they need to score the flesh around the implant pocket so that the the two sides will re-adhere. So far, I decided not to do anything. Let me know what your doctor says about it.
Hugs, Susan
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priyank - one other thought about treatment. Methotrexate has been traditionally used with IT therapy at but it doesn't really do very much and it isn't known to penetrate very deeply when there are solid lesions. Recently IT therapy has been showing some promising resulting with leptomeningeal disease in HER2+ patients when they use Topetecan with IT Herceptin. You might want to rule out HER2+disease spread but then also get the doc to consider trying a different cytotoxic drug as it looks like when methotrexate isn't a good match for the cancer cell line that Topetecan might be a good alternate, even with out HER2+ disease.
Here is the link to the BrainMetsBC.org site about Leptomeningeal Disease, with related links, if you haven't seen it:
http://www.brainmetsbc.org/en/content/leptomeninge...
This article from this year (2015) includes review of other meds used with intrathecal therapy, including Topetecan.Recent Advancements of Treatment for Leptomeningeal Carcinomatosis
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC453473...
There are also recent advances in immunotherapy which can be helpful when dealing with CNS disease as the body's T-cells can go places that many drugs can't. You might have to travel for treatment, if you are able to get disease diminishment. I have heard that some of these immunotherapy drugs are quite shelf-stable however, which might provide some options for gaining access from abroad (I hope). Immunotherapy gets the best response when disease is very small and under control, difficult in your mother's current situation.Many of the immunotherapy drugs are being studied in clinical trials where they are trying to develop population-based solutions and therefore 40% success rate isn't enough with that as the goal but it might be a better shot than not for those of us with CNS mets.
Keep us posted about your mom and how you are doing.
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I did five fractions of LINAC SRS to my cerebellum, from 9/9/15 to 9/15/15 (weekend in between). My hair started to fall out about two weeks after the first dose and it went on in bulk for a week or more, with some shedding after that as well. It is about 11 weeks since it started to fall out and I am happy to report that I've got a bit more than 1/8" regrowth again. I guess the estimate of 2-1/2 to 3 months until regrowth is about right. I am not noticing any thinning either.
Here's a link to learn more about the cycles of human hair growth:
https://en.wikipedia.org/wiki/Human_hair_growth
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Agness,
Are you saying that the portion of the head where they did the linac rads is where your hair fell out or all over? I had linac SRS a year ago to 4 different lesions and did not notice hair loss. Just curious.
Hope you are well. You sound strong and I'm happy to hear that!
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hi letranger - Yes, I lost hair where my SRS was. my RO said that hair follicles are very sensitive to radiation treatment. If you didn't lose hair did you perhaps have only single fraction treatments to your lesions?
I had the five fractions due in part to my reluctance to using a screwed in frame they use with a single dose and also because my RO admitted that multiple fractions was more toxic to cancerous cells.
Since the treated area is at the back of my head and my hair is generally thick, you can't tell.
In contrast, where I received 35 fractions of proton therapy to the chest wall and axilla (while on Herceptin if it makes a difference) more than half of one armpit is now bald.
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My understanding regarding hair loss and radio surgery, it depends on the location of the lesions. If the lesions are deep (not close to the scalp), there shouldn't be any hair loss. I don't think it has to do with multiple doses versus single dose, it is more a matter of where they are treating. I've had both multi-day cyberknife and single day gamma knife and neither caused hair loss because the lesions have all been deep in the brain.
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Interesting. I hadn't heard that. My tumor was just inside the back of my skull, though the area affected was larger/went in further due to displacement by the large tumor on my cerebellum.
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Hi Everyone,
I was diagnosed with brain mets last November, 2014. Original Dx of Breast Ca with mets to liver in 2011. Liver mets under control with Kadcyla. Brain mets (3 total) were treated with WBR. I have one lesion that is active again. Looking through trials...has anyone tried the vaccine trials?
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hi Priscilla,
Sorry to hear that you have a returning met. I had 4 lesions in November 2014 and did SRS to only those lesions. In 7 months they started regrowing. So I opted not to do wbrt. I asked my onc about vaccine trials and she said they can take a while to get results or something along those lines. I'm interested in vaccine trials too and wonder if any of our brain mets sisters have enrolled in any with any results.
Hope the rest of the gang is doing well! Xoxo letranger
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Just back from my neuro-onc appointment. My detailed brain MRI yesterday, one month after the prior one which was done at 6 weeks post rads (sooner than standard) showed increased spread instead of a reduction in what might have been post rads inflammation. It is lepto-meningeal disease spreading over my right cerebellum. My only symptoms so far are facial pain (trigeminal nerve involvement), slight fatigue, more congestion on the right side and possibly some back stuff.
I will have an Ommaya reservoir port placed in my head early next week. I have a load of appointments to do including an MRI of my back, CSF flow study next week, and I'm going to start on Kadcyla this Friday. Time for round three. My only consolation is that I've done the leg work, there is a protocol at MD Anderson that has had success, and I'm not the first one.All bets still aren't off but LM isn't a good development and it is a bit unusual to have disease go from a singular tumor to LM but hey, its cancer and it does what it likes.
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Agness! WTF?!?!?!!? I am devastated to hear this news. If anyone can beat this, you can! And you will! Stay in touch and let us know how you are doing. You are in my thoughts and pls PM me if I can do anything to help. Am I right to assume from your post that is is caught early? Is your treatment in Seattle?
Yes, you have definitely done a lot of research on Brain Mets and LM. Letranger
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Hi Agness,
Thinking of you! I am on Kadcyla as well since 2013.Hoping all goes well !! Keep us posted!
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Thanks letranger. I found a trial at Duke but when I called they were no longer recruiting. Dana Farber has a ton of trials as well. If I find one I will for sure let you know. Take care!!
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agness, if only it was just inflammation. I am so sorry it turned out like this. This disease is ruthless but you are so graceful, even now -- I really admire you.
I wish you an easy time with Kadcyla. If it helps, my MO said that our nice craniotomy sites have busted the BBB so Kadcyla can get in and help our brains. (I start on Tuesday.) Which IT treatment will you be having?
You are my "singular" heroine and always in my thoughts.
Big big hugs, Lisa
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Well agness that sucks. Hoping they find a treatment plan that works for you.
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Maureen, how are you doing?
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Agnes's- here in Seattle so let me know if you need help. F cancer. But if anyone can kick its ass its you. Hugs
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split bean. I'm doing ok. I'm a little slower than I used to be but walking fine no cane or anything. Skull is healing nicely and I have my MRI on December 7th with results on the 14th. Hoping for good results. My biggest issue is fatigue. I put up tree and took two days instead of a few hours. I fell asleep for an hour and good to go. The onc tells me it will get better with time. I hope so. Thanks for asking
Love
Maureen
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Agness - so sorry to hear of your progression. You are in my thoughts for peace and healing.
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Dearest Agness,
I know you are busy working with your med team on your treatment plan. Know that you are in my thoughts all the time. I wish I could be there. Love you, letranger
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