Brain Mets Sisters
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Great to know many of us are doing well, great news Fujimama and Goodie!
I also finished SRS after craniotomy and am doing well, running more than 8km a day. Future is hard to predict, but trying to cherish every moment. Hang in there ladies!
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Hi Ladies, I haven't posted on BCO in some time, maybe 8 months. I was doing Taxol and Xeloda, and then started naturopath treatments alongside the chemotherapy. I was in a BarcaLounger 4 to 5 times a week and it got to be a bit much! A lot has happened recently, my TM's jumped greatly, my port got infected requiring hospitalization, cancer has spread, etc.. I'll be starting radiation to the brain AGAIN (third time now) on Tues, for 5 zaps. I think I just had my first (or second) seizure. Initially I thought it was a drug reaction, as before, but after reading about them, I'm more convinced it was in fact a seizure. The first one on Friday, I fell. I'm still living on my own, but now not driving. My kids are very concerned about this, but I said we'll take a look at everything again after this round of brain zaps. And I'm still fighting the infection. What a trip this has been. I just wanted to reintroduce myself, I'll be lurking....
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Skylotus,
Good to hear from you. I'm new to brain mets this month. I will be doing some type of radiation not sure what yet. Hope yours will kill those mets and stop your seizures.
Hugs,
Terri
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I have one more WBR session left! I am so thankful that so far there have been no debilitating side effects! Do I get them later on? I am excited about ending WBR and going back to chemo. I know the chemo was working. I hope that all that hard work did not go to waste.
Fuji and Goodie, we are all pulling for you. Yeah!
Hugs,
Brenda
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Wow! That's great Brenda! For me, the fatigue hit about a month after treatments ended. It wasn't debilitating, just took extra long naps.
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I also wanted to add that RO did not prescribe steroids nor anti-seizure drugs. He said that I may not need them, so why risk side effects, etcl
Hugs,
Brenda
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Wonderful news Brenda! I haven't had WBR, but I'm so glad to hear you are nearly done with no side effects. I hope you stay that way!!
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Today I received a "diploma" and certificate of completion from the radiation staff. I also received (because I requested it), the mask that they used to keep my head down and ready for WBR. I have an appointment to get another MRI end of October.
I am hoping to get some energy back. I will call MO tomorrow and see what's next.
Hugs to all of you!
Brenda
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Brenda - congrats on being done. I hope the rads cleared the malignant cells.
Are you working with an integrative practitioner to help your brain heal? Midday naps, sleep at night, things that boost lymphatic function (water, zinc, vitamin c), omega 3 oil, Boswellia Serreta are some of the things I've read about. Give your brain the best chance to heal.
Ann
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i had my first dose of SRS yesterday. My neck is sore, increased headache on that side, and increased balance (ataxia) after just one of five doses. This is so not fun. I have been using Boswellia for weeks but I think I will need dexamethasone for a while which I reacted badly to last time.
I have been fasting for two days now, hope to make it to tomorrow before switching to a ketogenic diet. I'm taking lots of water and tea plus a teaspoon of coconut oil each day. Still taking my supplements throughout though I cant muster fish oil on an empty stomach
Ill finish on Tuesday.
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Thinking of you, Agness. I hope your side effects can be managed successfully.
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HI Agness, my Girlfriend was also Stage 3B and had a Crainiotomy 2 weeks ago to remove a solitary 4cm lesion. This was the only sign of disease on imaging.
We are waiting for the full pathology report to come back before further treatment is decided. We are also hoping for SRS to the tumour bed.
What other treatment have you got planned?
Thanks
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Freakzilla, I too had a craniotomy to remove a single lesion. Thankfully I've only needed one dose of GammaKnife radiation to the tumor bed. I had that in March. I continue to be scanned every 3-4 months and am taking Tamoxifen. The pathology of my brain met was identical to that of my original tumor. Thinking of your girlfriend - and you - as you navigate these next few months. Please don't hesitate to message me with questions.
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Goodie16, Thanks for the reply.
We see the Onc on Wednesday to talk about way future treatment. My girlfriend finished the Dexamethasone today. It's been a real nightmare, no sleep, acne, etc. She is only 32 and we have a 3 year old boy, so it hasn't been easy.
The primary tumor was HER2+ and ER+. The rest of the body is clear. The Onc said about restarting Herceptin again to keep the body that was. Will find out more on Wednesday.
Thanks for your help.
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Freak,
You might want your girlfriend to check out Boswellia. It's an herb that can be taken instead of steroids. My neurosurgeon actually recommended it after my surgery. I have noticed a real improvement in reduction of inflammation in my body in general. Maybe ask her onc about it...
My cancer is HER2-, so I can't speak to the Herceptin. My recent PET also showed NED, I pray your gf stays free of disease too. Best of luck.
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Thank You,
I've read so many encouraging stories online. Got to stay positive. Best of luck for you too.
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Freakzilla - I hope things are getting better for your girlfriend. The dexamethasone saved my life but then I reacted badly to it the longer I was on it. I weaned off it in less than two weeks to Boswellia Serreta and found that 1800 mg was comparable to half a Dexa. I boosted my Boswellia intake to two caplets 4 times a day or so during rads (3 of 5 done) and I haven't needed to take any steroids thankfully.
You asked about follow-up for me, since we are in a similar boat. Right now the basic follow-up is pre- and post-rads whole brain MRI for planning and to understand the changes caused by treatments.
I will have whole brain MRIs every three months to monitor for disease progression.
Later this week I will do the first of three spinal taps/lumber punctures this round, to look for circulating a tumor cells in my spinal fluid. A single spinal tap is only 45% accurate while three taps gets closer to 95% accuracy. I'll have the next two taps done the week after, done by an interventional radiologist with imaging to guide the work. We will repeat the punctures periodically if we don't find anything. This is to monitor for disease progression and to improve access to targeted to the CNS.
I would very much like that surgery and rads would be enough to staunch out my malignant cell line but after reading the stats, you can't bank on it.
As for any drugs, my new MO said to take nothing additional. My NO thinks I should be back on Herceptin and plans to discuss it with the MO. Observationally, my tumor started showing symptoms three months after I stopped adjuvant Herceptin; it seemed to slow down progression.
When I discuss more widely though everyone thinks I should do more rather than less. The problem that we brain mets patients run into is that this is an under-researched area, especially when it comes to HER2 disease and targeted therapies. If we removed a stage II breast tumor the patient is treated with systemic adjuvant chemo. If we remove a brain tumor then they do rads and cross their fingers.
Evidently per an ASCO 2011 prognosis guide I'm in the best possible category: I have a 50% chance of living longer than 25 months. For some reason my NO thinks this is good news. We all know that they can't tell us who will survive longest or perhaps even overcome this disease.
Docs are very nervous about using brain ports (ommaya reservoirs) in brain mets patients. This appears to be based on past experience with cytotoxic drugs and not with targeted therapies.
My NO said that it is possible to do a nuclear medicine study of the flow of the spinal fluid to see if there is good flow before considering Intrathecal therapy. Having had a craniotomy can compromise the flow some evidently. Having pooled cytotoxics is dangerous.
There are experimental drugs used systemically to try to penetrate the blood-brain barrier, I sort of liken these to blindly hoping that the drugs do what they want. It seems a crap shoot. That said, my tumor was encapsulated, dense, rubbery, with a poor blood supply so systemic therapy had some influence on tumor development - my NS said it was atypical for a brain met.
I believe for HER2 disease that we need to both treat the haven (the CNS) and the rest of the body at the same time. Any cancer drugs are depleting and I don't want to pussy foot around and get slowly pulled down by chemo and targeted therapies. I want to do it at one go, and hopefully my previous pathologically complete response repeats itself.
I am still doing more research now to try to figure this out for myself. My paradox is that I probably have the least amount of cancer in me right not than I have for years and I feel good -- except for rads fatigue and recent surgical recovery. My head can't wrap itself around the prognosis but logically I can't wait to see what happens.
HTH
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Hi Agness,
Thanks for your reply. Steroids finished on Friday. Still side effects, but hopefully these will subside with time.
We are in the UK, and things work a bit slower here. The only real difference is my Girlfriend is ER+ and is currently on Zoladez and Exemestane.
When you say rads, I take it you mean to the surgical bed and not WBRT?
When I my girlfriend was initially treated she had Herceptin with Taxotere for 3 cycles and then the remaining 15 Herceptin alone. Whilst speaking to her onc, she said after surgery to probably go back on Herceptin, and possibly add Perjeta as well. All of this is dependant on the pathology report. We see the Onc on Wednesday so we'll find out then.
Thanks for your help.
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Yes, I had stereotactic radiation to the tumor bed, 5 doses.
Your GF only had three rounds of Taxol? That seems really low. Like me though, the malignant cells had already slipped into the CNS. Perjeta might make a difference but the targeted therapies have been noted to work better in conjunction with cytotoxics. Any discussion of going back on any chemo that can penetrate the BBB? Carboplatin can but Taxols are too large they think. Some of the other drugs that pass through the BBB are Tykerb and I've also seen gals treated with TDMI/Kadcyla. Then there are more experimental drugs including ONT-380 and other -- but they are in specific trials right now and usually require disease progression. A decent listing of BC Brain Mets trials is kept here:
http://brainmetsbc.org/en/content/clinical-trials-treatment-breast-cancer-brain-metastases
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She had six Fec-T treatment. Herceptin with the Taxotere.
In the UK the other drugs aren't easily available. They we're on our cancer drugs fund but was removed in May. Kadcyla will be removed in November. There are requirements to have them. As there is presently no evidence of disease, you can't have them. You can pay for them privately. Kadcyla is arount £8000 per treatment.
I'll let you know what the Onc says tomorrow.
Thanks
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Freazilla - I see, it was a different protocol.
Read this today which pissed me off:
"In the past we've often excluded patients with brain metastases, when we've been looking at drugs with the potential to cause remissions in extracranial sites of disease such as liver, lung and bone. I think we should revisit the wisdom of that, because the notion there was that you wouldn't want to have a patient whose life expectancy or performance status (a measure of functioning) would be poor enough that it would stack the deck against your finding the effectiveness of a drug in non-brain sites. So often patients with brain mets have been excluded, and that has limited our ability to get a signal from a wide variety of drugs as to whether there is potential effectiveness in the brain."
An Interview with Andrew Seidman, MD, Memorial Sloan-Kettering Cancer Center
And you wonder why more progress isn't being made with this disease. Grrrr...
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My mom just got diagnosed with a single lesion, about 2 cm, peripheral, parietal lobe yesterday got the news. Oncologist called yesterday after results of MRI showed this. Mom was to start a clinical trial today but not anymore. She is seeing a neurosurgeon this afternoon…
I haven't updated her profile but hope for your comments, recommendations, experiences, words of encouragement
This has been hard…
She is TNBC, diagnosed in 2011 originally stage 2.
Now in July they incidentally worked her up for kidney stones and found 3 mets to her spine (L3,T10,T11), multiple nodules of lung largest was about 2 cm as well, mostly right lung, VATS done confirmed this was metastatic TNBC…
We weren't expecting the brain MRI results
But then again we weren't expecting any of this 2 months ago when it all started as this was all found incidentally on CT scan of her abdomen looking for kidney stones.
Its been test after test, biopsy, surgery now possible more surgery ….
Mom is actually taking the news better than I imagined…but its hard at times
:(Thank you for listening,,, silently read a lot of your post…thank you ..
God bless,
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hugs to you and your mom Anita's daughter.
You are in the thick of it now. Those first few days/ weeks after metastatic diagnosis are frightening and hard. Especially when you weren't expecting it.
I too found out about metastatic disease tony brain and liver by accident when I had an US something else. I was floored. That was almost 3 years ago. I am her 2+ so had some targeted therapy options. I had gamma knife done on my two lesions and eventual surgery 2 years later. Maybe your mom will have anon surgical option since it's just one lesion.
TN is tricky but there are lots of people on this website that are there right there with you. Check out their thread to see if they have any advise.
As far as brain mets- I'd also seek a radiation incologist opinion before going for surgery. That way you have two different options for the one tumor ( I hope). Both approaches have advantages/disadvantages. It's nice to have both sides of story before making a decision.
There ateliers of meds out there that I hope can help your mom.
Best wishes
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Saw the Oncologist yesterday.......
Still waiting for the ER and Her2 Status of the pathology report.
When my Girlfriend was initially diagnosed the Onc wanted Surgery or Radio Surgery then a SRS boost to the tumour bed. Once we knew surgery was possible the Onc then wanted SRS to the tumour bed and WBRT. Yesterday this changed to just WBRT. She seems to think the area is too big for SRS to the tumour bed. The tumour was 4cm. Nobody has ever said before this is to big. I know it was to big to have SRS to treat the lesion. I believe Agness's tumour was bigger then this and she is having/had SRS to the tumour bed. I think the Onc has got this wrong.
As is stands now we are awaiting a consultation with the Radio Surgeon to talk to them about it. The Onc was really pushing towards WBRT, but I want to save that in case it is needed in the future. I'm worried about the long term side effect and using it now, when it might be needed in the future.
The Onc initially said Herceptin would be restarted. This has now changed. They said if we start Herceptin now, and there is a recurrence to the body we won't be able to add Perjeta. In the UK Perjeta is only licenced alongside Herceptin and Taxotere for a recurrence. If you've had Herceptin to treat a recurrence you then can't have Perjeta. I knew this was the case, but don't know why they said they would restart it.
The Onc was also completely dismissive of Lapatinib and Capecitabine. She said the evidence doesn't suggest it reaches the brain. I have read studies to the contrary.
Overall came out very confused as the advised treatment has changed every time we have spoke to the Onc.
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Freakzilla- sorry for the confusion.
I Just had a follow up MRI of my brain yesterday. It was good. I did speak to the RO about Tykerb, Xeloda and herceptin and if they cross the Blood Brain barrier. I was on Xeloda and Tyjkerb for over 2 y ears before a liver lesion made them take me off Tykerb and put me back on Herceptin. I am still on Xeloda. The RO said that perception and Xeloda don't cross the BB barrier. he was skeptical on if the Tykerb did. All I konw is that I haven't had any new lesions in my brain since I started the combination. That is good enought for me.
Hope you can make a decision soon and find peace with your choices. It is a scary and confusing process. I find that once a deciion has been made I feel much better. I hope you do too.
best to you and your girlfriend.
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Leftfootforward Thanks.
Can you tell me what treatment you had for the Brain Met please?
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My tumor was 3.5x5cm and they treated me with a linear accelerator, frameless in 5 doses. The RO originally proposed one session with different equipment but I didn't want another halo. She said this frameless option works in 3-5 doses depending on the treatment plan and it increases the toxicity to any residual cells with separated fractions.
WBR is still "standard of care" but SRS is very much accepted as an alternative. Like you guys I wanted to preserve cognitive function and save WBR forwhen there weren't other options. Here are two links:
Adjuvant therapy after resection of brain metastases. Frameless image-guided LINAC-based radiosurgery and stereotactic hypofractionated radiotherapy.
http://www.ncbi.nlm.nih.gov/m/pubmed/23934329/
The use of sterotactic radiosurgery for brain metastases from breast cancer: who benefits most?
http://sharedresources.fredhutch.org...-benefits-most
"In all subtypes other than TNBC, SRS can provide meaningful control of BM even in the setting of multiple lesions and may be worth repeating for new lesions that develop metachronously."Push back hard Freakzilla.
- Ann
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Freekzilla- I had gamma knife done for my two frontal lobe lesions. My tumors were smaller than your girlfriends. I think the biggest one was 2 cm.
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Leftfootforward & Agness,
Thanks, really confused now. We had it set in our mind to go for the SRS Boost, but the Onc has put doubt in our head now, and maybe should go for WBRT.
We're awaiting the referral to speak to the Radio Surgeon how. Hopefully won't be long.
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Hoping the RO helps. I find mine to be one of my most important sources of advise. I trust his opinion. Hoping that yours makes you less confused and helps you to understand why you would do one thing over the other.
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