Brain Mets Sisters
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Thinking of you Ally.
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Thank you Leftfoot and Goodie. I have always found hope in your posts, you have been dealing with this a lot longer than I have. I hope this is just initial shock and fear and that I might find some hope again.
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AllyBee, I want to add my voice to the others as well.
When my met presented itself back in 2016, I was told to put my affairs in order. I was told by my MO that my brain had to have been infected with cancer cells back in 2015 but that they were too small to see. The tumour grew in 2016 til DX in July 2016. It was 10cm large. I had a craniotomy to remove the tumor, whole brain radiation which was tough to recover from but I did eventually. I was only given the WBR because my RO said that since it was related to my breast tumour, and I have the most agressive and fastest growing form of breast cancer, it was better for my prognosis to prophylatically treat the whole brain. I did have a couple of spots show up in 2018 around easter and at that time, we just zapped the tumour bed. To this day things are still shrinking. My 3 month MRI checkups have been pushed back to 4 months. I also am no evidence of disease from the neck down since 2015.
There can and should be hope for yourself. It is incredibly scary as any metastasis would be but treatments have improved a lot, even since this thread was started so long ago. There are people who have been around for years. I hope to be one of those people. So far, I have beaten my odds and have good quality of life without losing any of my cognitive abilities. Even my short term memory has improved a lot in the past couple of years. Don't give up hope unless you are actually told there is nothing more to be done.
I am sending out my warmest thoughts your way. I hope I have helped you some. It does get better with time.
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AllyBee,
I've had WBR plus two rounds of gamma knife and it's always been able to eradicate the tumors in my brain. Just had gamma knife this morning for 4 lesions. They thought I only had one but on a more careful study of the scans in preparation for the treatment, they found three others. Making the mask took about half an hour and the gamma knife took an hour. No pain during the procedure. Actually slept through most of the gamma knife treatment though I tried to stay awake. I was given one 4mg dose of Dex in pill form before I left. Feel fine. Just a bit tired which is surprised since I worried that the Dex would keep me up all night.
I think there's a good chance that the radiation will work on your brain lining and spinal cord. I also had radiation to my lung and bone. Both procedures were very short and I had no side effects. I haven't had brain surgery but I would guess that recovery is hard.
PM me if you want to talk more.
Big hugs, Susan
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Oh thank you so much mara and Susan. You've got me crying again lol, but for a good reason. You are right about not giving up hope, no one has told me there is no hope except Google. I feel much better today
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Allybee I will be sending positive vibes your way as you start fighting again. I had Mets to my pituitary gland in 2016 and was just diagnosed in June with leptomeningeal Mets. I have done 10 radiation treatments and got an Ommaya Reservoir inserted on Aug 1st, I’ve received 10 intrathecal injections of Herceptin(I’m triple positive)
I’m doing well and feeling good. Hope this gives you some encouragement. PM me if you have any questions:)
Best,
Kath
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Thank you Kath. It's nice to know I'm not alone.
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Thank you Kath. It's nice to know I'm not alone.
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Hello, I wondering if you all could help me. I am looking at possible mets to pituitary gland...my MO is sending me to endocrinologist. Have appt on the 11th and then back at MO on the 14th. Hormone levels coming from pituitary went up when they had been normal previously. Brain MRI in the beginning after bone mets were found said "nothing of significance" according to MO. I asked my MO at my visit with her on the 1st before I got my 3rd dose of Zometa does having elevated of these hormones mean something could be there, she said yes, it could of been too small to have been seen at the time of the MRI...Anyone have mets to pituitary who could tell me how it was found and what was done once that was confirmed? Thank you!
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I have had pituitary gland Mets. Have you had any symptoms? I had sever leg pain, fatigue, always freezing cold, severe dry skin. It affects the cortisol levels as well as thyroid. It was found in a brain MRI.
The endocrinologist can test cortisol and thyroid levels.
Good luck,
Kathy
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I am 6 months out of chemo for my breast cancer. Was feeling better and then the last 2 weeks have had bad headaches, and feel like I did just after chemo. No energy, generally not feeling well. Now my doc wants to run an MRI of my brain to see if there are any mets there.
Had anyone had a similar experience or been diagnosed with brain mets so quick after main breast cancer treatments?
Thanks everyone!
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I did not have this reaction. I will keep you in my thoughts. Lmk how your MRI turns out. I am having one of my spine this Sunday to check on my leptomeningeal Mets. Fingers crossed it is all gone!!!!!
Best
Kathy
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Best of luck with your MRI Kathy. Hoping for excellent results for you.
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Kathy, I definitely have fatigue, I have what I call “between the eyes” headaches on occasion, takes a long time for an extra strength Tylenol to touch it when I take something for it. I’m not someone who has headaches a lot but have had these several times a month since my bone Mets were found. I teeter between hot and freezing because I get hot flashes due to surgical menopause. I will ask endocrinologist about thyroid and cortisol levels during my appt with him on 11th. Hoping you have excellent MRI results! Thank you for replying:
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Hi, Twinklemom. I was diagnosed with a single brain met 8 months after being diagnosed with breast cancer. I had chemo, surgery, then radiation for the breast cancer. I was ready to celebrate after the last radiation! But two days after I had my last chest radiation I had a seizure at home and a second at the hospital. No symptoms other than acting a little disoriented and was talking in a very confused manner for about an hour or so before the first seizure. I had brain surgery then sterotatic radiation. It has been a little over a year. I have 'no evidence of disease'. I deal with the side effects of medications, aches of my scars, exhaustion, and the worry that creeps in sometimes. I focus on celebrating life, savoring the beauty all around me in the common everyday things, and appreciating the love and kindness of others.
I well know the worry of having a headache or not feeling well. It usually was a needless worry for me because it was actually a seasonally allergy, dehydration (my medications are drying), or a common illness that my husband got after I did. But I will still worry when the next thing comes along. I will hold you in my heart with the hope that all will be well for you, Twinklemom.
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I was considered Stage IV from the start by my MO although the cat scan of my brain in 2015 did not show anything. MO said there were probably cancer cells from the start in my brain, just too small to see. My official dx was 2016, was still in active treatment. I have had surgery, whole brain radiation, spot radiation in 2018 and am currently NED in body and brain. Feeling good. Any issues I have are drug related to my ongoing cancer treatment, not brain related. Pretty strong physically all things considered.
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it’s looking like I may get accepted into a clinical trial for Nerlynx at the university of California San Francisco. Will hopefully find out soon. I assume I will have to pass all of their tests but they already have my medical records. This would be a win for me since I was denied by insurance 3 times and they also also recently denied my request for gamma knife. Here is to hoping.
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Good luck LFF.
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LFF,
Hope you get on the trial. If you come down here, I'd love to get together. PM me.
Hugs, Susan
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Susan I’ll let you know.
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LFF I am currently on Xeloda and nerylnx for my body and brain. I hope you get in the trial I have been doing well on this combo. I also receive monthly IT herceptin for my leptomeningeal brain Mets .
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Hello leftfootfor, thank you for this post. We recently found spots on my brain. I'm currently doing radiation. I will continue with halavan once I'm done with rad in 5 days. So far so good no major se.
I seen my oncologist today and he put things in perspective for me. And God sent me here for confirmation... keep the post coming our words to each other are more than comforting for some it's a life line.
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traveling to UCSF Tuesday to see if I qualify for the trial. One echo I have to pass and I meet with trial MO.
I’d be on the arm for TDM1and. Neratinib.I had been in TDM1 once before snd it help my liver Mets at bay, but that’s when my brain Mets took off. Do sounds like a good combo for me. Fingers crossed.
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Crossing my fingers so hard for you LFF, I hope you get into the trial. I always took great comfort from your posts even before I was officially dx'd with the brain met. Brain mets were always my biggest fear after getting this cancer and you being around for years after initial dx was comforting. May it continue a long time for you.
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I got into the trial. Let the new complicated journey begin. I am grateful.
Happy thanksgiving everyone.
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Glad you got into the trial LFF and that you feel good about it.
Happy Thanksgiving to our U.S. members. Enjoy it however you celebrate it.
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Hello, my name is Malinda. Cancer is in my brain now.I have lost my sensation of my half teeth and tongue and my voice. My left vocal cord is paralyzed. Does anyone here have similar symptoms? Will it get any better? I am so scared and i feel so helpless. It's so hard everyday
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Malinda, it will get better. Your brain is still inflamed and you will notice strange sensation. I still get sensitive tooth sensations randomly even now. As time goes on your brain will relax and the inflammation will go down. I can understand the fear. Do not be afraid to ask for help and ask doctors for help as well.
My recovery after WBR was long because I fell into a deep depression and did not think I would ever get better. It took me a good couple of months to get over all the steroids, radiation and surgery. I was incredibly tired and had no appetite. Once I started eating more, I started walking and recovery came quickly for me. I am fairly strong and active now. The only casualty was the hair on the top of my head, it did not come back. I now simply wear wigs and like them a whole lot better than my own hair which is like straw.
I also recognize that I have had a lot longer to deal with my cancer and that this sounds like this is all new to year. It will take time to get your brain wrapped around this whole thing. My suggestion is to ask for some sort of therapist or social worker you can talk to for extra emotional support. Also, if you could, there is a profile section you can fill out about kind of breast cancer that you have. It will help people answer your questions more clearly.
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Hi Mara, Thank you for your quick response. I will fill out my profile. Typing is a little difficult for me. My vision is blurry. My reply will be short. Also brain radiation damaged my second language ability. I have forgot a lot of words, spelling. But thank you again for reply
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Thanks for the profile Malinda.
I will tell you from my experience with WBR, initilally I lost some of my cognitive ability as well for a while after WBR. Reading, math etc were difficult but it did come back as the brain relaxed. I will say I feel unchanged from where I would be after the years in treatment. The cognitive changes are largely not permanent and you should recover your spelling and words as time goes on. It can also be relearned if necessary.
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