Brain Mets Sisters
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I had a lomi lomi massage this morning and acupuncture this afternoon. I'm relieved that my scans were clear over the past two weeks because I think my body has hit a new level of healing. I've felt kind of woozy, much more tired in the early evening, increased eye fatigue and increased symptoms of cerebral edema. No one mentioned anything like this here so I decided to go search it out myself. Here you go:
Weeks or months after treatment: So-called "early delayed" or sub-acute reactions commonly occur between one and three months after treatment. Symptoms include loss of appetite, sleepiness, lack of energy, and an increase in pre-existing neurological symptoms. Sub-acute reactions are thought to be due to temporary disruption to the nerve coverings. These symptoms are usually temporary, lasting about six weeks, the length of time it takes for myelin to repair itself. In some cases, however, recovery may take several months.
Another reaction that can occur weeks or months after treatment is swelling as a result of the build-up of dead tumor cells. The brain lacks an effective lymph system, the clean-up system of the body. Therefore, dead tumor cells are cleared away very slowly and radiation-induced cell death may cause rapid build-up of dead cells. The swelling that occurs as a result of the dead cells may cause an increase in neurological symptoms similar to the symptoms of the brain tumor.
From: http://www.texasoncology.com/types-of-cancer/brain...
So yeah, re-myelinization and clearing out dead and damaged debris ramp up for a while. My Chinese Medicine doc said I'm doing really good but my Qi is low. I'm not supposed to think too much, no fretting.
I had found this link the other day about healing myelin in multiple sclerosis patients but it is good for our purposes too. Personally my body finds omega-3 oil to be too much of a blood thinner so I can't do that. I need to restock my alpha lipoic acid, glutathione and acetyl l-carnetine supplements. I started taking a multi-vitamin on top of my other supplements because I felt my body needed more than my diet was providing to it during this time.
http://www.evenbetterhealth.com/multiple-sclerosis...
Here are some other brain healing nutrition links:
http://m.brainline.org/content/content.php?id=4083
http://www.yourfamilyclinic.com/nutrition/brainboo...
http://www.brainline.org/content/2012/06/nourish-your-noggin-nutrition-and-your-brain_pageall.html
Tomorrow I go get IV vitamin C (25 mg plus minerals) and next week I'm going to see about resuming hyperbaric oxygen treatment after getting vit C.
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Very promising research on delivering chemo successfully to brain (overcoming blood - brain barrier)
http://www.thedailybeast.com/articles/2015/11/10/p...
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can someone who has taken a gamma knife for a 7mm cerebellar met, take escitalopram for general depression and anxiety or it is prohibited?/
plz guide
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LetmyWifeLive, here is the precursor article by the same doctor
Lipsman N, Mainprize TG, Schwartz ML, Hynynen K, Lozano AM. Intracranial Applications of Magnetic Resonance-guided Focused Ultrasound. Neurotherapeutics. 2014;11(3):593-605. doi:10.1007/s13311-014-0281-2.
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Thanks for sharing. If the larger trials reproduce the same promising results, I think this will be a landmark achievement in treating Brain related disorders.
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Update
I haven't been here for a while, as everything has been ok. In this time my partner and I have got married as well.
For those of you that don't know my wife had a 4cm Solitary Brain Met removed in September last year. 7 weeks later an MRI was performed for a SRS Boost to the resection cavity. During the 7 weeks the tumor had partially recurred around the edge. It was then surgically removed again. The resection cavity was now too big for an SRS boost, so Conformal Radiotherapy at a dose of 40.5 was administered to the resection cavity. This was completed in December. CT Chest, abdomen and pelvic in January were clear. MRI brain 12 weeks after radiotherapy have found 2mm and 6.7mm Brain Mets. It is on the same side of the brain as the previous tumor. The resection cavity looks fine on the latest MRI.
It's bank holiday in England this weekend so hospitals are closed Friday and Monday. My wife now has to have Chest, Abdomen and Pelvic CT scan again to check for further spread. The case will go to a MDT on Friday week. I'm hoping for SRS to the two areas. The Onc said they will probably look to do some additional treatment after this, to stop a recurrence. Either WBRT or some type of chemo. I'm guessing Tykerb and Xeloda. We will know more next week.
My wife is only just 33 and we have a 3 year old. I always try and stay positive, as I know many people are in a worse situation.
I've always been against WBRT, until it was absolutely needed, but I worry due to the amount of recurrences in a short period of time.
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freekzilla-
Congratulations.
As far as the new mets I think SRS is a good option. And I can speak of how well I did on the combination of Tykerb and Xeloda. No new brain mets after starting that treatment. Do it was very good to me. It did have SE but they were manageable. I can elaborate later if you want.
Thinking of you and your wife. Best wishes
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Gciriani- The neurologist didn't mention anything about slowly tapering down. I had been taking 750 mg of Keppra twice a day, for a total of 1500 mg daily. He agreed to let me move down to 500 mg twice a day, for a daily total of 1000 mg . He wasn't thrilled about it since it is still very soon after my seizures and SRS, but he still approved it with the stipulation that if any symptom gets worse to call immediately.
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Thanks Becs. My wife has been taking 500 mg of Keppra twice a day. I need to correct what I wrote before, lest I spread wrong info. The neurologist suggested a ramp up of the substitute (25 mg/day-increase every week, until 200 mg/day are reached); he did not suggest a tapering of Keppra.
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Ladies, I was dx with bone mets in May. I'm embarrassed to say that in December I did juvederm and Botox to feel better about my appearance. Shortly thereafter I experienced chin and lip numbness and more recently numbness on the left side of my skull, pain and headaches. my onc did an MrI/ct scan two weeks ago. Negative. Any thoughts? Very scared. I've also had horrible tmj and my vision has changed and I have eye strain I'm assumming from Zometa, Faslodex and Ibrance. I'm totally freaking out. Is the Mri/ct reliable
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Was it an MRI or CT Brain scan?
MRI for the brain is far superior.
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he did both an MRI and CT
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MRI of brain is supposed to be reliable. Have you asked your doc if this is due to side effect of any medicine you are taking now or taken before ?
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good morning. I'm a week into my chemo break and as usual I have high expectations of myself and I'm frustrated because I'm still so fatigued. I have been able to do more but I'm still on the I have a busy (relative) day it still takes me 2 days to recover. Also I've been having all too familiar neurological stuff but I don't know if it's new or been there and I've been to sick to notice or what.
Agness your post about post brain radiation things made me feel So much better. I have scans in two weeks but now I have a little hope. Thank you
I hope everyone is doing ok. I'm glad spring is finally here.
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The constant fatigue is so hard to deal with, Laura. I would give just about anything to feel GOOD for one day.
I have my 6 month brain MRI on Monday. I'm trying to stay busy this weekend and focus on the nice Spring weather and Easter.
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Out of interest does anyone know what is the smallest lesion which will show on a MRI Scan with contrast? I know it can depend on the scanner used.
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Goodie I know !! I'd even take being able to do something while sitting. Nope. No energy. I'm just a blob !! If I feel a tiny bit better and go out its hell to pay. Like today. We went out for lunch. Had a good meal and when we left I almost didn't make it back to the car that was parked by the front door. Sigh.
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Hi! I'm currently 40 years old with a husband and 4 year old daughter. I was originally diagnosed at stage IV her2+ BC 12014. Was doing great (clear) until this year when 3/2016 brain mets showed. I'm considering a clinical trial with drug Abemacicilib, which from my reading and research is very similar to Iberance and has been pushed or already has been approved by the FDA. Any others with experience with this drug?? I'm scared and not ready to leave my young family!!
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Hi! I'm on Abemaciclib. I believe there's two different arms, in conjunction with surgery and not with surgery. I am in the surgical arm, which meant I took it for ten days before my crainontomy and started up again two weeks after. It's only been a little bit since my surgery, so it's too early to tell, but other people in the trial I've talked with have had good results.
Main side effects are diarrhea and low WBC counts. In fact, I've heard many have had to have their dosages reduced, with no ill effects. I have been struck with bad nausea but I want to stay at the max dose as long as possible since it takes a higher dose to get into the brain.
One good things about trials is that you get followed very closely. I get a brain MRI every 4-6, which considering how my mets slipped through the cracks, I'm very happy about
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Bad_at_usernames - I had a craniotomy on the 7th to remove a possible troublesome lesion. 11 more ovet 3 cm so theyre saying not a good candidate for focused or gamma knife. Onc suggested wbrt but that scares me. 2nd opinion onc recommended this trial wother the Rx. Husband and I are hoping for a meeting with my Onc on Tues. I had a CT/PET scan Friday as my scans 12/2015 were clear. I'm just stuck with what decision should be made and having a difficult time all around.
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freakzilla - Animal studies ofMRI has shown that 119 cells is the threshold for sensitivity, at 117 cells they can't see it. I believe that there are different sensitivities of scans as well, having to do with the thickness of the slices. Sometimes even a different scanner will slice differently to reveal hidden lesions that an earlier scan missed
PET/MRI is a newer technology that allows for metabolic sampling of activity. I had a PET/MRI at the end of December and between two samples areas, one with suspect disease and one that appeared clear of spread the metabolic graphing was shockingly different. It is still so new that once seem reluctant to use it or perhaps don't know how to interpret the results. It is a longer brain scan and requires a higher level of experience -- they had the department lead do mine.
I wanted to add that actively firming scar tissue also will uptake contrast like tumor; I saw this after neoadjuvant chemo in my own surgical planning MRI scan. Whether there is progression or diminishment is interpretive though it is always taken in context. I know, even though my neuro-onc couldn't see it that I likely had both scarring and new lesions at the start of the year. I did have to attack the progression but I don't doubt that the IT Herceptin and modified ketogenic diet also caused cancer cell death at the same time. Just something to keep in mind
HTH
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Something never mentioned here are the use of Gliadel wafers, polymer disks embedded with chemotherapy agents that are used to line a tumor bed in the brain. I read about this technique in an older cancer patient mag in a waiting room in 2014. A gal had recurrent brain tumor growth from breast cancer brain mets and finally they tried Gliadel Wafters and it kicked it for her - no recurrence.
When I had my craniotomy last summer it wasn't brought up at all and frankly I was dying and wasn't thinking much about things like live tumor tissue sampling, pre-operative radiation or adjuvant therapy to the CNS. In hindsight, and upon reflection that never once has anyone mentioned it since last summer, I am reminded that it might be worth considering.
Here's a link about it:
Gliadel for brain metastasis
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Happy Dance! My brain scan today was clean. No evidence of disease. The surgical bed is showing as healed, as well. It's been 1 year since my craniotomy and Gamma Knife radiation to the tumor bed. I'm so relieved. I won't get a brain scan again for 6 months, unless new symptoms present.
We also discussed my Keppra. I've been struggling with fatigue and my onc wants to consult with my neurologist about lowering the dose. My seizure was caused by the met bleeding. Since it's been removed, my onc thinks the possibility of any additional seizures is very low. I see my neuro in mid April. We'll discuss more then, I'm sure.
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That's great Goodie. What a relief for you. Big hugs
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Hooray Goodie
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Yay Goodie!! Awesome news!
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Happy to hear the news from Goodie.
Sitting in the waiting room drinking some radioactive cocktails. Brain MRI and body CT today. It's only been six weeks since the last one but I'm nervous as usual. Been having a little dizziness and a weird feeling behind my eyes that I'm hoping is just tiredness...haven't been sleeping well. Plus, my back hurts.
How is everyone doing? Laura, how's chemo? Becs, how's the recovery from radiation going? Agness, how's your recovery going?
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Good luck Bad. Will you get results today or do you have to wait?
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I hope I don't get them today. My brain MRI that Dx'ed me, I got a called within 45 minutes. My two clear scans since, no one called me and I just waited until I got the results on my patient portal. It seems that no news is good news. Nonetheless, I will be glad when this week is over
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Well I will certainly cross my fingers for no news then.
My onc that manages my brain and brain MRIs, schedules them an hour and half before my appointment with him so I get the results immediately. I'm so thankful for that. My onc that manages the rest of me, scans me on Tuesdays and I get results on Thursdays. Wednesdays are a bitch that week.
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