Brain Mets Sisters
Comments
-
I have the steroids going. My next step is surgery. I am calmer but will not do WBR yet. My tumour is in the dura so am NOT using the WBR yet since this won't stop the from coming. Scan me chemo for now. I want to save the big gun til later. I am sort of glad I never got out of treatment so not as fearful as I was. These boards allow me to talk since I can't talk to family.
0 -
My surgery went well. The doctor was able to remove the uterus, cervix, ovaries, and tubes. Unfortunately due to a lot of endometriosis he had to do so via vertical incision and not robotically. The recovery from this sucks! It's actually worse than my mastectomy recovery. Thankfully no cancer was found.
Lots of love to all my brain mets sisters.
0 -
I'm glad your surgery went well Goodie, here's to a speedy recovery.
Mara, good on you for being active in your treatment decision making. I think it's really important to have a say and to be happy with what you get. (I'm hoping there are no long lasting se's from WBR- at the mo I'm losing my hair again
& it had only just got a couple of inches long after my chemo) Becs, annoying re the appt mix ups, hope things are sorted soon. That's a lot of pills!
Take care all
kt
0 -
hi everyone. Zarovka started a new thread in the stage 4 forums titled how many are we 2016. This thread was started last month. Z is attempting to count the number of metsters we have posting or lurking on our stage 4 forums. We are both thinking that folks have possibly missed that thread because they are viewing only threads marked as their favorites. If you don't mind bumping over to that thread if you have not already it would really be appreciated.
Thanks so much
Mary Anne
0 -
Thanks KT, I will be interested in how you do in case I decide to take the WBR. Not sure yet. On the one hand, it is being painted as preventing lesions that they "think" will cause problems. I am just ever so fearful of losing my cognitive ability. Funny because I would have no hesitation had I been full of mets, it was just the one in my dura. We will see. Sorry about the hair. I will be interested in if I will lose hair on any of the chemos for this stage in my cancer. I am sorry to have to have joined but this thread is always so smart and supportive of each other. Of course, I lurked before but you guys are awesome. Susan is also encouraging to me as far as being able to live life despite a head full of mets and having WBR. I will see what the doctors present and go from there.
0 -
Goodie, am so glad nothing found after your surgery this time. We all need a break from time to time.
0 -
Mara - mets to the dura are hard because you need the dura. They do have synthetics they do repair with though when they do surgery, have they discussed this with you?
Where in your head are the lesions located? I opted for partial brain rads as my lesions looked to be limited to the cerebellum. My last scan confirmed for the third time no disease outside of the treated area -- do we were right.
Rads is very dependent on the equipment and the training of the docs. Not very much has been studied with regards to mets in the nervous system so they default to the studied option - WBR. You might need to look around to find other experts and opinions.
Stay strong
0 -
I'm doing well, I walked 3.5 miles over the weekend, was cycling around my neighborhood yesterday. No new symptoms. The facial numbness is just about completely abated after two HBOT treatments. I go again tomorrow for more HBOT.
My back has been feeling a bit mangled, I think it was the rads to c2 vertibrae on top of the craniotomy and surgery at the center-right of the back of head on top of whiplash up the right-side of my spine in 2000. Too much scar tissue. A massage and then craniosacral therapy last week pointed out that more is going on there. Doing ballet on the weekend caused numbness in my limbs which went away the next day but my research said it is coming from a pinched nerve in my neck. I contacted my chiropractor and asked if I could just do traction on my spine without any adjustments; my body doesn't want an adjustment right now, it's a table that has a piece that holds your skull and gently tugs at your spine. He had to set it pretty low in terms of tension as my body didn't want too much of a stretch yet. I'm hoping the external manipulation helps my body counteracts the damage.
My echocardiogram came back normal; they do heart checks when you are on Herceptin.
Still no idea when my next brain scan will be.
I went back to work part-time today, my direction is needed at our company. Hoping to make waves in a good way.
Thinking of you all always.
Ann
0 -
thanks for advice Bad. Calling my Drs office tomorrow. Third day on a row of non stop nausea and zofran isn't helping. First two weeks on Abemaciclib went ok. Nausea was spotty. Now it's non stop which is concerning.
0 -
I am so sorry Elizabeth. Do they offer Emend or have you had it before? Hope it can stop for you. Can you stomach a ginger tea along with to assist. Sorry about the nausea. I am getting that with the brain swelling myself but luckily goes away with gravol.
Hope all others are having a decent day without too much SE. Bless you all.
0 -
The temporal lobe behind the right ear is where my tumour is Ann. Perhaps that is why they want the WBR. I have not got to the planning stage beyond the initial talk about my surgery next Friday. I want it out now personally but we will see. The surgical plan is craniotomy since doctors feel they can get it out. Will be having some oncology appointments before, sure will have plans that the doctors will recomment. My greatest fear of course is losing my mind function.
I will be scanned for other mets but somehow am not too concerned for those. The brain absolutely terrifies me. I do know that you are awesome with all the information as I used to lurk before this diagnosis. I suppose the only thing currently in my favour is other than the brain swelling causing pressure issues which thought was vertigo, nothing else cropped up for me. We will see what happens.
0 -
Mara, by tumor was also in the right temporal lobe. I had a craniotomy in February 2015 to remove it and then GammaKnife to the surgical bed about a month later. My brain scans have been clear since. The craniotomy was surprisingly an easy recovery. I was in the hospital for 4 days after, with 1 of those days being in ICU. The only long-term issue I have had is some slight short-term memory loss. It's not terribly troubling and my family and friends have been able to help me remember when I forget. I've continued to drive and was working full-time until my surgery in June 2016.
You'll be in my thoughts!
Carrie0 -
Thanks so much Goodie. I am still scared of doing WBR and am hoping to just gamma the tumour bed myself and try chemo that would cross BBB. The biggest pain in my butt while waiting for surgery is the pressure from the swelling, thankfully does not last as long. I am going to try exercise to relieve.
0 -
Mara, my neuro onc encouraged me to take Boswellia. It's an herbal medicine that can decrease inflammation in the brain, and other areas of the body. I've been taking it since March 2015 with no side effects. It also doesn't interact with any other meds. It might be worth discussing with your medical team. I have been able to avoid steroids thru my use of Boswellia. The only time I don't take it is 10 days prior to surgery, as recommended by my medical team.
0 -
Mara,
So sorry to hear about your brain tumor. I'm no doctor but it sounds like craniotomy followed by GammaKnife makes sense given the size of the tumor and the fact that you don't seem to have any other tumors. I agree with you that losing brain function is the scariest thing. Did they discuss the risks of the operation given the location of the tumor? Are you able to get second or even third opinions?
Hugs, Susan
0 -
Update
I'm sure through previous posts you're all aware of my wifes history.
She has now received two cycles of Taxotere, Perjeta and Herceptin. In addition to this Intrathecal Herceptin has been started with Methotrexate. Herceptin was started at 21mg and increased by that increment until reaching 105mg. She has now received three treatments at 105mg. A Brain MRI was obtained two weeks before starting treatment. Another MRI was obtained last week. All of the previous lesions on brain/dura have shown stability or improvement, but there is a new 4mm area of contrast showing in the left cerebellum. The Neuroradiologist is unsure if it is cancer and wants to rescan in 4 weeks. All previous lesions were on the Right Frontal Lobe. The latest MRI scan was obtained two days after a lumbar puncture.
Not really sure what to do now. Got to wait for the next scan and go from there.
0 -
Thanks Susan. I have not got to meet with radiation onc yet. My plan is to stick with surgery then gamma knife to where the tumour was because I still feel WBR is too heavy. The tumour has not yet moved beyond the dura and there were no other lesions. Chances are more will show up even if I did the WBR. I am in Canada so unsure how 2nd or 3rd opinions work here. I am planning to get the surgery and go from there. The news still sucked but I was relieved that it was just the one so far. I have had to other cognitive issues, just the pressure from the brain swelling. No vision problems, memory etc have been affected. I am just impatient for plans to be in place. At the end of the day there would have to be some really compelling reason to WBR now. The fear of losing my mental ability has to be something I can live through before I go that route. As stated, I would do it if more lesions but there aren't any yet. That is my biggest fear. I don't even care if there are other mets yet in body. It is completely the mental fear. You are my inspiration for the WBR though for how well you are doing if I do have to go that way. Thanks so much. As far as risk, they do not believe the surgery itself should leave me impaired since just in dura. Was not IN the brain yet.
That is why I would prefer some caution first. After all, I will be followed regularly and this has been there from my first diagnosis of BC or longer for that rate.
0 -
Thanks Goodie, I will look into the Boswellia. The steroids have been OK but wouldn't mind looking into something else since I will be on them a while. You are my fount of knowledge too. You are awesome too all of you.
0 -
freakzilla - was the left cerebellum ever included in any field (as in over spray from SRS on the front)
0 -
freakzilla - was the left cerebellum ever included in any field (as in over spray from SRS on the front)
0 -
Freakzilla- Living scan to scan is horrible. I hate that this is the only choice we have. I just had one on July 27th and already have another next week. Hopefully the next one will show some improvement for both me and your wife.
I too am on steroids (4mg a day). I am very sensitive to them, but I don't mind. They seem to balance out the fatigue from the anti-seizure meds. They also have me on a daily prescription Pepcid and Bactrum 3X a week to deter the effects of long-term roid usage.
0 -
I agree about the fatigue balancing effect of the steroids. I actually seem to sleep pretty well on them 2. Just on 4 of the 4mg myself. I am used to basically sleeping 5 to 6 hours. When at hospital initally after diagnosis, I was awakened every two hours for vitals/checking cognitive abilities. Now after waking in my own bed, I find can sleep couple of more hours. My goal will be get the craniotomy then get the heck out of there as soon as possible. My family considers me sick but I do not. I am not sick until I am is my motto. Don't know if there are mets elsewhere yet. Will be getting those results later. Not too worried anyway, if there was a tumour in my brain, not really gonna be surprised if there is something elsewhere. I still look at you guys though been through so much. I lurked before diagnosis of course but nice to be able to talk to you all finally even if for a crappy reason .
0 -
Ann/Agness,
I was reading some studies on ketogenic diet, which I remember you follow. I read that there there are two variants, classical and MCT modified (medium-chain
triglycerides). Which one do you follow please?
0 -
Hi Ann, I don't think so. Most of the lesions treated by SRS were on the Right Frontal area. I guess it could be possible though. We will hopefully see Neuro Onc next week, so we'll see what he thinks. The doctors are so amazed at how well the IT Herceptin has worked on the Dura, I think they completely missed this when they reviewed the scans. I saw the scans on Tuesday, it's as if everything has been wiped away after 6 treatments of the IT Herceptin.
Becs, I know it's a nightmare. Fingers crossed for you.
0 -
Mara, when I had my crainontomy, I was only in the hospital one night, so hopefully you can peace out pretty fast too. Where are you being treated
0 -
I am in London, Ontario Canada. Surgery is at University Hospital here which has excellent Neurosurgery and my Radiation/Oncology is at the London Regional Cancer Program. They are also excellent. I have decided that I am not "sick" since did not have anything happen other than skull pressure. I have been checked and unsure what if any other mets there are. Anything in my body has not troubled me yet so am not too concerned. I still question the WBR this early on and will probably not do that unless the doctor can give me enough of a risk/reward. I know I have IBC and that may be why but I am still so scared of the effects, especially if it will NOT stop other mets from showing in my brain. I am leaning toward gamma knife to the tumour bed.
Is radiation done a while after the craniotomy? If so, how long was it for you?
0 -
I took a bit of an unconventional path. Instead of diving into rads, I skipped them for the time being and did a clinical trial after surgery with Abemaciclib, a BBB crossing oral chemo. It keep the tumor beds stable for awhile and even shrank my teeny otherwise untreated left side tumor, but it knocked down my counts and after I took breaks/reduced dosage, I had regrowth. So then I did SRS but I took the long way to get there. No regrets doing the trial first, I didn't lose any ground and even gained a little (no regrowth in the occipital lobe tumor bed and I started out with a 3cm tumor there before surgery, stayed stable on the left side, it was the paratial sucker that regrew, but then it was only 1.6cm, down from 3.3 before surgery)
0 -
Thanks for the info Bad. I am going to ask about BBB chemos and/or gamma knife/SRS options. I would even not mind radiation to my temporal lobe but for now do NOT want my hippocampus touched.
We will see what happens. I know I need to listen to the reasoning from doctors first to see. If they can give me a compelling risk/reward as said and also, IF I can live with the fear, I would do WBR. Trying not to completely refuse something at the start since I will be in treatment the rest of my life but my mental function is the most important to me.
It's only been about a week since diagnosis and I have been on a whirlwind. I spent the first few days thinking "I'm gonna die" and now I have told my family I am not "sick" yet so I plan to live normally as possible.
I know at some point that may change but for now, I have been lucky for having no other impairments or problems with the rest of my body. It would be nice if I was a unicorn too. We will see.
0 -
giovanni -- I did a more strict ketogenic diet in the beginning but since around April/May I have added in a small (1-2 tbsp) of fruit as my body was looking for more. It's basically a modified ketogenic diet that is focused on low carb veggies and meat/protein plus coconut oil and other fats.
I'll send you my recipe archive links on Pinterest. My friend (non cancer patient) and I have been collecting them for months.
Ann
0 -
Thanks for the links Ann/Agness. You have always a wealth of info.
0
