Brain Mets Sisters

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.

thank you both. The mets are both subcentemeter and I am on Tamoxifen. I’ll know more about the official recommendation soon.

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.

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.

Mae, will be thinking of you tomorrow!

Leftfoot, will be praying too for your MRI to give you great results

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.

All good and home now, follow up in about 6-7 weeks.

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.

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.

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

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.

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.

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."

mike- I am glad you have a plan. IT treatment has helped many. In my thoughts

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!