Brain Mets Sisters
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I would say it depends on the size. If they are small and not causing problems I would wait personally. If they are on the larger size then waiting might be a problem as you don’t want them to get too big for gamma knife radiation.
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Just a word of caution about waiting, with my brain met, the meds (Tamoxifen) caused a bleed which led to a seizure...and ended in the discovery of what they thought was a cavernoma on the MRI was in fact a brain met. Just wanted to provide additional info so you can ask the best questions to your neuro onc.
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thank you both. The mets are both subcentemeter and I am on Tamoxifen. I’ll know more about the official recommendation soon.
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Illimae, sorry to hear about the MRI. Waiting is never easy.
I can say when I had a local recurrence on my surgery site, my RO waited before doing radiation just to make sure they would grow. She did not want extra radiation since I already had WBR in case shrinkage happened. It was hard to wait but glad she did.
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I know you will make the right decision for you after you receive all your information. I’ve both waited and not waited for treatment at different times.
I wish you all the best.
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Well, after another discussion with my neuro rads onc, I decided to stick with the plan for gamma tomorrow. She did say I could wait and rescan in 8 weeks, which is good but it would complicate travel plans and prolong my needle phobic anxiety.
So, let’s roll...
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I’ll be thinking of you tomorrow. Best wishes
I am anxiously awaiting my follow up brain mri which is scheduled for June 17th. Waiting is hard. I am glad you can eliminate the waiting anxiety and just get rid of it.
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Thanks leftfoot, sending you good vibes for your follow up MRI 😀
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Mae, will be thinking of you tomorrow!
Leftfoot, will be praying too for your MRI to give you great results
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Good luck to Illimae and leftfootforward on rads and MRI respectively.
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Everything was going along fine then last night she started to have convulsions, very violent convulsions. 911 was called and was sent to a local hospital. It was discovered she had a metastatic brain tumor in the frontal lobe that was bleeding. The Dr. was very frank and told me she was gravely ill and would probably not make it. She eventually stabilized and will soon be sent to Oregon Health Sciences hospital (OHSU) for a more detailed examination and MRI. Previous PET scans showed no brain mets.
What can happen, tell me the truth now? Can people get well from a bleeding brain tumor? She's 72 and otherwise in excellent health.
My wife is a wonderful person and here's her complete history:
She was diagnosed with ER/PR+ Her2- in Dec 2012. She had a large tumor in her right breast and a small metastasis on her spine.
She had AC but no Taxol as her first infusion caused an almost fatal reaction. She was also given Nuelasta but had an almost fatal reaction to that as well.
The AC worked for a time and reduced the main tumor and completely eradicated the met to her spine. She was given Afinitor/Aromasine but had a nasty reaction to them and was given tamoxifen. This worked for a little over a year but then the tumor in her breast sudden went crazy. She had an immediate mastectomy and lymph node removal.
Results of the operation showed her main ER/PR+ tumor to be 100% estrogen and grade 1, there was a second tumor inside the main one and was ER/PR+ 30% estrogen, grade 3. In 9 of her 19 lymph nodes removed was found triple negative metaplastic cancer.
Lifetime amount of AC and radiation seemed to take care of everything and was given tamoxifen. Everything was fine until, after about 14 months, tamoxifen failed with numerous mets to her spine. Also, her ER/PR+ turned to triple negative.
Next she was given Halaven (erubilin) and it worked for her. After six months of it she was NED. She was then off all chemo for 3 months but a PET scan showed the TNBC was back (small amount though). She's back on Erubilin again and, like all of you, are waiting for a medical miracle.
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Mike, I have no experience with most of her treatments and my brain mets have not caused similar symptoms, however, I feel strongly that there it just takes one new med or combo to get things under control again.
What is the plan for the bleeding and the tumor itself?
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All good and home now, follow up in about 6-7 weeks.
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Thanks for the reply illimae. I'm mostly alone so not many people to talk to. No plan as yet, the OHSU hospital will soon be doing an EEG and MRI. The MRI will show just what's going on. Just talked to a brain surgeon from OHSU and he said she's stable and somewhat alert. The first hospital she went to did I think a CAT or was it CT scan. He looked over the scan and said there was very little bleeding so that's a positive sign.
I'm a nervous wreck here. You have no idea how I felt when I came home alone. Where she sat, book mark in place and just all the little things to show her presence. I'm not a hard type guy but am a combat wounded RVN veteran I can do nothing to help her but have to stand around and hope and pray everything comes out okay.
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It's hard, you want to fix things but can't fix this, I know my husband would trade places with me, it's so difficult for those who must just watch. Hopefully they're working on a plan moving forward, please update when you know.
Meanwhile, maybe someone else can provide more info/experience for you earlier post.
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mike- I don’t have a similar experience. I did however have over 32 spots in my brain at one time. They treated them. I have since had another 29 treated. I just keep growing small Mets. My brain is not stable . I am still here when they didn’t think I would be.
I will be thinking of you and your wife. Hoping she stays stable and they can treat the tumor.
We are here for yo
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Got the word back from my wife's MRI. She's in intensive care from several seizures brought on by a bleeding tumor in her brain. Also her dura has lesions. No treatment plan as yet, probably this morning. They tried to get the throat expander breathing tube out but they were afraid her throat would close up once removed. They will try again this morning. Running around feeding cats, getting stuff together for an overnight stay with her in her room tonight. I hope my snoring won't keep her awake.
Her regular hospital, where she has a medical plan, was full up so they sent her to probably the top university hospital in the Pacific NW. Not that her regular hospital was bad but these guys have top oncologists and cancer research and treatment is their specialty. Oh well, grab a McBreakfast sand and coffee and off I go; wish my wife luck and a prayer or two.
MikeW.
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mike- OHSU is Sam big. I grew up in Portland.
I hope you were able to rest and that today brings some news to help create a plan. You are in my thoughts
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Good to hear from you Lindalou! It has been awhile.
Sorry to hear about your new brain tumor. Like illimae, I had the heavy metal head cage for my gamma knife. The mask is definitely better. I still have dents in my forehead where they screwed the cage into my head. Now that I am bald again they are more obvious. :-(
Hugs, Susan
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Got news from the brain surgeons. They did a biopsy to my wife's brain. No brain tumor however the Dura is all cancer and inflamed which causes pressure on the brain and seizures. Just when her bone mets were under control this happens. Being a research hospital they just advise my wife's regular oncologist. This is all news to me. Please, any input about this would be helpful. I've been crying almost solid for the last 2 days. This situation doesn't look good.
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Mike, there’s mention of an immunotherapy trial in page 224 of this thread, which I think looks promising for triple negative folks, although I don’t know much about it. Maybe it’s worth asking her MO or neurologist about.
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mike- I am sorry for this news. I hope you regular ZmZi will come up with a plan. I believe they usually do radiation to the dura to treat the cancer.and use steroids to treat the swelling. At least that’s what I remember reading about on this thread. I have not had his treatment so am not an expert.
Know I am thinking if you and your wife.
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Thanks for the reply Leftfoot forward. I am sooo lost right now. I'm a combat wounded veteran with PTSD so this whole cancer disaster has compounded my mental anguish. I am not, nor have ever been suicidal, I just don't seem to have the gene. I've always loved and respected my wife, my wife and home was my "safe spot" to hid from the world. As typical with PTSD I have few, if any friends to talk over my pain.
I know Googling about Leptomeningeal Metastases is not a good idea. Very few treatments and 4 to 6 months to live. I'm all in on having my wife try the Joe Tippens Fenbendazole route.
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Hi Mike,
I just want to say that i very proud of You For talking care your wife, when any one go thorough difficult times like this , you need someone helping you to carry all the weight from your shoulders, and believe me your wife knows how much you love her.
You are her angel, and you are going to be strong for her, this battle is very hard only the strongest survive.... Try to be focus... And try to get as much information that you can .... There are allot of treatments, there are genetic testing also ... Try to get as much information that you can .
Keep strong......you and your wife are in my prayers.
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Update on my wife. The plan is for a port to be inserted in her skull and inject chemo right into her head. It only takes 2 minutes twice a week. The chemo they intend to use is very powerful and are confident it will work. I forgot its name but starts with a "m". methotrexate!
Genetic Testing was done at 2 labs for mutations. Nothing, she has no mutations that are treatable as yet. Also she's not BRACA pos.
I met her Oncology Brain Surgeon today (second time) and I mentioned I'd been following a few forums on this subject. He said they were, "Just so much white noise."
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Mike, I’m glad you all have a plan. Hopefully, the neuro onc wasn’t being dismissive but he has a valid point, there’s so much crap passing itself off as medical advice on the internet. Fortunately, there are some places to find information and inspiration to do with as you wish. Best of luck and please let us know how it goes. Hugs to your wife.
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mike- I am glad you have a plan. IT treatment has helped many. In my thoughts
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Hello all
Had my follow-up MRI on Monday and they just called with the results. I metastasized in December. I had 4 lesions in my brain and was treated with gamma knife. In February I had a follow up MRI and 2 were gone and the other 2 had shrunk in size, but no new ones. This time I have 8 new ones, she said they were all small but they were talking about doing whole brain radiation. Im obviously scared senseless again and have no idea which way to turn. Can anyone tell my about whole brain radiation vs gamma knife? Is one more effective then the other? Has anyone experienced a similar situation? Any help or information would be appreciated
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Erkipper, gamma knife is generally easier to recover from with less side effects. 8 lesions is over the typical standard of 1-4 for gamma but people have treated more than that. If it were me, I would push back for gamma again, not WBR. They probably recommend WBR because of new mets soon after your initial treatment but you can absolutely challenge it.
FYI, I had 5 initially treated with gamma, then 5 new ones 6 months later, treated with gamma again, followed by a year tumor free. I made it clear from the beginning that WBR was to be saved as a last resort only. This has been respected and factored into my treatment plans.
Good luck!
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erkipper- I daughter-in-law for and successfully had gamma knife to over 20 lesions in one session. It took 3 appeals but eventually insurance had to pay for gamma knife vs whole brain. I am saving whole brain asa last resort.,
I would personally fight for gamma knife. PM me if you want more details.
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