Brain Mets Sisters
Comments
-
Damn Macols about your eye but you are still here with treatment options so let's root for that.
Freakzilla - thanks for the update. It sounds like a good plan and LINAC seems to have worked for me. If your girlfriend can do some water-based fasting at the start and wean onto a calorie-restricted Ketogenic diet for a chunk of that time it might increase the efficacy. DHA or omega-3 supplementation can help also during rads and brain healing.
We don't get that many shots at these treatments, nor do we want them, so if we can throw more at them to increase their effect so much the better. They are only just starting to study the effects of water-based fasting, ketogenic diets, and calories restrictions and others than it being challenging for the patients the results look good and patient reports are good.
I had my zinc and copper levels tested again and since HER2 seems in part related to zinc deficiency and copper is promotive of inflammation and angiogenesis, as well as unfavorable for brain cancer generally getting copper levels down and zinc levels up is also helpful. You have to work with your doc on this, preferably one who practices integrative medicine.
0 -
Thanks Ann,
How many session did you have? They said 15 to me on the phone, but will find out more on Thursday.
0 -
Posting my update separately so it doesn't get lost.
Balance is still fine, no symptoms of meningitis still. Feeling that I really need to own that I have a type of brain injury that is likely healing. After surgery and after SRS they really don't tell you anything other than we will follow up in a month. WTH
I did look it up after my emergency craniotomy and there are things one can do to aid healing of the brain and improved function of CNS metabolic processes and I'm adding them back in with nuance and detail to try to offset what I can from treatment.
1. Steroids lower your immunity and increase your blood sugar both of which are promotive of cancer. While dexamethasone can be amazing at reducing cerebral edema it quickly starts to work against your body. Get onto 1500-3000 mg of Boswellia Serreta after you taper down your steroid dose; start high on Boswellia and lower it as you see you need less. A little Tylenol or even an ice pack can help a little with local pain and inflammation reduction.
2. Drink lots of fluids, especially electrolytes which includes soups containing vegetables. If you take water with electrolytes you activate the sodium-glucose Cotransport system which allows your body to take in fluids just after the stomach contents pass into the small intestine, instead of waiting to be absorbed in the large intestine. CSF turns over several times each day, plus it also drains into the lymphatic system so you want it all working optimally.
3. Light exercise helps with healing. Do rest but don't be bed ridden. Go do a walk, add a jog if you feel up to it, qigong, simple dance, yoga or tai chi, swimming, these all help improve brain oxygenation and lymphatic function.
4. Sleep is important. Steroids are awful in this regard but sleep is when your brain heals best and your CSF does the most cleaning and renewal. Take an afternoon nap each day between 1-3pm, after lunch. It really helps offset any sleep disturbances at night. Try to keep your eyes closed and not reading or doing screen time and really let your body and brain slow down. Naps of 30 min - 1hr seem good to me, longer can make you feel sleepy/grouchy. Laying on your left side might be more helpful to CSF flow as well.
5. Eat well with lots of veggies, protein, and take a probiotic. If you don't eat a lot of meat or live a stressful life historically then it's pretty safe to assume that you are zinc deficient which also impairs digestion (pancreatic enzymes) so you might want to supplement.
6. My naturopathic onc said no iron supplementation during rads, extra DHA and/or omega-3s. Post rads take CoQ10 and he suggested carnetine and phophatidyl choline, plus 1-2 omega-3 caps twice daily (oh fish burps!). Magnesium also helps your body deal with oxidative stress so if you might have been low make sure to supplement or do epsom salt foot baths.
These are my collected healing notes, use at your own risk
it's more than what the docs say - which is not much.0 -
Freakzilla - usually they do one big session using cyberknife with a frame but I said no and my RO said she could do 3-5 doses with SRS LINAC. I ended up with 5 doses, 3 one week with a weekend break and then the other two. Apparently I'm still reacting to the damage from rads, assuming Im having brain inflammation and not LM. More doses is supposed to be more damaging to cancer cells and less damaging to healthy tissue. Perhaps the difference in the number of doses/ fractions has to do with the area being treated as mine was on the cerebellum away from more sensitive structures
0 -
Thanks, I was shocked when they said 15, but will find our more on Thursday.
Just want to get whatever it is started now.
0 -
I wanted to point out that, ethical or not, your cancer center is only going to offer you treatment with equipment they have on hand. If proton therapy or gamma knife might be better options but they only offer cyberknife and LINAC then they might not ever mention it. That's just business, and training, influencing the information you going to be given. Some are going to be offered WBR just because of standard of care, or not offered repeat SRS merely because it is an emerging new practice.
They might be able to get similar results using different equipment, they might even do a better job with less cutting edge equipment -- in the end the rads equipment are just tools and the technicians, the physicists, the docs, and radiation techs are the ones that make the difference oftentimes. But, that said, it is our brains we are talking about and a little bit can make a huge difference in preserving faculties.
It never hurts to ask nor get a second opinion, and F any doc who says otherwise to you. It might make medical information sharing a bit more clumsy, I saw this with proton therapy to my chest wall with an outside group, but in the end my heart, lungs and most of my pleura were not irradiated and I had no burns on my back from treatment. I think it was worth it.
Be empowered!
Ann
0 -
Hey all, hope you are feeling okay. I think about you all lots.
Someone in my cancer group shared this news, they are starting to try new methods to get drugs through the blood-brain barrier.
Canadian Doctors Perform Breakthrough Blood-Brain Barrier Surgery Using Focused Ultrasound
http://www.techtimes.com/articles/104505/20151109/...
The initial patients are all primary brain cancer but this might gain speed of us brain Mets gals put pressure on our docs.
They know that tumors and surgery and probably rads too increase the permeability of the BBB but we also know that even with effective targeted therapies that the concentrations aren't high enough from systemic therapy to do much more than diminish and inhibit advancement. More than one oncologist has told me that they can't rid my mets to the CNS with chemo (not that rads, surgery or combo might not work to eradicate disease).
BTW, I was curious about the BBB when I learned of my tumor and thought, surely something breaks down the barrier. You know what does? Meth. Kinda creepy and fascinating at the same time.
Status reports anyone?
Me, I've had facial numbness and pain. My oncology team hasn't been very helpful about these probably not acute symptoms. Since I had other reasons to see my chiro anyway I figured I'd see what he thought. Since surgery and now rads to the back of my head on the right Ivebeen having C1 issues. I had impingement of the occipital and Trigeminal nerve from my tumor originally and I worried that we had to mess about with that area of my head. He says since my symptoms are pointing to an external cause of symptoms and I was messed about in my neck that it is highly likely the cause. He says he's not overriding other possible factors and there was no getting around my needing my head cracked open in July. I'm hoping that some chiro adjustments, icing and PT might help out
0 -
Agness - I hope your chiro can get you feeling better soon. I LOVE my chiro.
I had my onc appointment yesterday. Bloodwork all looks good and tumor markers are holding steady at 11. We had a long discussion about my issues on tamoxifen, namely horrendous joint pain. My onc wants to avoid the hyster/with ovary removal for as long as possible, so he gave me a supplement regiment to try for a week and then to ease back on to tamoxifen. I'll now be taking Coqu 10, Fish Oil, and an increased dose of Vitamin D in addition to my Boswellia and Magnesium. So I'll take only those and my Keppra for a week. Then re-intro tamoxifen at 2days/week, then 3days/week, then 4days/week and so on until I'm back on a full dose. I see him back at the end of December to see how it's going.
In the meantime I made an appointment with my gyno to discuss the possible hysterectomy and ovary removal after the first of the year. I'm really hoping to avoid surgery for awhile yet, as I've finally gotten the promotion I wanted at work and don't want to be off so soon. My job is very physical, though, and I simply can't handle the tamoxifen SE while working.
0 -
7 down, 8 to go! The steroids have been creating havoc on my body (thrush, way too thin blood, swelling, high blood pressure, and some muscle weakess in the legs along with joint cramping) so my onc decided since I was having no symptoms from the brain mets that it would be okay to start tapering off. Going from 8 mg day to 4 for this week and next week 4 mg every other day. Then rads will be over and I can heal for a couple of weeks before my MRI. Still able to drive myself to treatment (an hour each way) so far. Hubby and daughter are working their schedules so they can take me if the fatigue starts to set in. I like my independence though! :-D Hope all are dong well!
0 -
Hey Lori - okay, almost half time, that's great. Sorry about the thrush, seriously one of the most miserable things in my opinion. You've got fluconozole and the lozenges, right? I found that the combo ended up working as well as anything, especially taking the lozenges 5x/day. Best wishes to you, glad you're doing okay.
0 -
Lori,
If you don't have any brain met SEs then why does your doctor have you on steroids in the first place? Driving an hour each way sounds tough.
Hugs, Susan
0 -
Steroids are to prevent the swelling from the rads. Nice to be on a lower dose. I do have fluconazole and magic mouthwash. No lozenges...haven't heard of those.
0 -
Lori,
I know what the steroids are for but my RO told me that as long as I didn't have any SEs, I didn't need to take steroids. Since you said you didn't have any SEs, I'm wondering why your doctor put you on them. For most people, the steroids are worse than the radiation so I'm hoping more doctors will move away from just automatically putting everyone who has WBR on steroids.
Hugs, Susan
0 -
I just saw on the Angels Thread that our beloved adnerb passed away on November 6th. So sad... She last posted on this thread in September about finishing up WBR.
0 -
Adnerb's real name was Brenda Solis.
This is what she had on her profile:
Brenda S. "Do not go gentle into that good night...Rage, rage against the dying of the light!" ~Dylan Thomas
0 -
RIP Brenda. Too soon
0 -
RIP Brenda. Very sad
0 -
RIP Brenda. So sad.
0 -
So sad to hear of Brenda's passing. Her family, and all that loved her, are in my prayers.
0 -
To Brenda, that we all likewise do not go quietly.
I hope everyone is doing well -- and making lots of noise
An
0 -
Hi. I was treated for two small tumors on my brain last February and then in April. I was told not to drive until my recheck in two months, but I never had any dizziness, vision changes, or other side effects so I drove after a few days of my radiation surgery. I think it would depend on where in your brain the tumor was, and what your doctor told you.
Be well,
Barb
0 -
Hi. I was treated for two small tumors on my brain last February and then in April. I was told not to drive until my recheck in two months, but I never had any dizziness, vision changes, or other side effects so I drove after a few days of my radiation surgery. I think it would depend on where in your brain the tumor was, and what your doctor told you.
Be well,
Barb
0 -
Hi! New here and am excited to get support and share with others. Yesterday was my 5 year anniversary of my mastectomy of my right breast. At that time I was stage 3 with 11/12 lymph nodes involved. I am HER2+ which stinks. A year later my cancer had returned and was in my axila, neck, and upper back. Unfortunately, the tumor in my armpit compressed and damaged the nerves in my right hand. I now have no function of it and have pins and needles in my hand, and numbness in parts of my arm. I have had 5 recurrences since 2010, and they were always in my neck or collarbone. Chemo or targeted therapies would work but I have never gone longer than 8 months cancer free.
In February 2015 I had my routine 6 month brain MRI and they saw a small spot on the base of my cerebellum. I had stereotactic radiation a few days later and two months later I had another scan which showed the tumor was gone, but another, tinier spot was now in the frontal lobe. When they compared the scans, the new tumor was actually there but was so tiny they missed it. Had the radiation surgery again and so far I have been free of brain tumors.
I have been through every HER2 medicine there is and none of them kept the cancer away. So now I am out of options and I don't want to go back on harsh chemo. I recently started having a lot of shoulder blade pain and pain in my implant. Had a CT scan last thursday and chest xray which showed my implant has ruptured and there is another lymph node in my collarbone (the same spot its always in!). I now am waiting to go for a bilateral MRI to get a clearer picture of whats going on and then I meet with the plastic surgeon to discuss removing the implant and options for what to do after.
Its hard to keep fighting and stay positive when nothing seems to work very long and you live with constant pain for 5 years. I have three girls, 21,18, and 14. They are my reason to live and I pray I can be there to at least see my youngest graduate high school. I was always afraid to join a forum because I didn't want to get frightened of what may happen. But now that it has spread to my brain, I am hoping to find support and friendship from people who know what I am going through.
- Barb
0 -
Barb,
Nice to meet you. I started with inflammatory bc with bone mets 6 years ago. I was stable on hormone therapy for 5 years. This past July, I was diagnosed a recurrence, this time in my brain (pituitary) & liver mets. Hormone therapy does not work for me anymore, so I'm back on chemo (taxol) 3 X a month. Having my first followup brain MRI tommorrow. I hope you do well with treatment. My son is 18 and first year in college. I hope to make it through his 4 years.
One day at a time.
Terri
0 -
0 -
All went well with WBR! No major side effects other than a little fatigue and of course the steroid side effects. Now we wait and schedule an MRI once healing has taken place for a few weeks. Then it is back to chemo for me.
0 -
fist pump in the air, and high five! Congrats! Glad to hear your spirits are high. Xoxo
0 -
Keesmom, we all understand here. yes, your kids need you so we are here to help lift you and offer you our prayers andexperiences.
I have multiple brain mets, which unlike yours are not NED. This week makes one year surviving with this buggers in my head. My options are limited but there are clinical trials if you want to try those. I'm In a clinical trial now. Buying time. But I'm here. I can function. And I look forward to this forum and the shared insights of the women who are fighting along with me. We are here for you. I have down days and then I remember I an still here and I put on my makeup (looooove makeup) and try to do what I can.
You're going to be ok. That's what people around me tell me. (But who knows for how long) but I like hearing it. Maybe those words can give you strength, too.
Warm regards.
0 -
Thanks for the warm welcome! Last night wasn't a good one due to the pain from this stupid ruptured implant but I am better today. At this stage in the game I pretty much have been through every type of treatment and test there is! You name it, I've done it.
I hope to be able to help others on the forums as much as I am being helped!
Barb
0 -
borscheid - congrats on getting through it. You might consider taking extra supplements to help your brain heal. Omega-3/DHA is a big one. I hope it works wonders.
Barb - welcome. Sorry to hear your story and that you are in the same boat but it's a good bunch here.
I get my next scan next Monday which will show hopefully healing of what they think was inflammation and no progress. I'm feeling like it's going to be a long week.
They tell you to watch for symptoms but then that is tough when you've had surgery and radiation to the head. I have issues with my first joint in my skull which is causing roving pains on my face and scalp on the right side. My chiropractor has been able to help and now he has me using an orthotic foam block to stretch out my neck and help to restore the curve in my neck which isn't really there anymore. Then we've had an odd virus passing through the house and you no longer know if you are having weird cold virus symptoms or if you are having symptoms of progression. Ugh!!!!!
I hope everyone has plans they are happy about for the holidays this week and beyond.
Thinking of everyone.
Ann
0
