Brain Mets Sisters
Comments
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Right,
As you all know my girlfriend had a solitary 4 x 3.5cm Brain Met completely resected 8 weeks ago. We had been waiting for an SRS boost to the resection bed.
12 days ago my Girlfriend had the MRI Scan for planning for the SRS. Last week we spoke to her Onc and said the scan was all OK. There was some bruising/hematoma in the resection cavity, but this was to be expected.
This morning we was told that the SRS boost had been rejected as they feel felt the tumor had recurred where the tumour was before and it is too big to treat with Gamma Knife. Stunned is a understatement.
This afternoon the neurosurgeon who resected the brain met looked at the scan. He thinks it is cyctic/hematoma. There is a MDM meeting on Friday to decide what to do. It looks like it could be resection again.
My girlfriend is destroyed. Can't believe you can have such conflicting info in 1 week.
Preying it isn't a recurrence.0 -
sorry to hear this news. I hope they get a plan in place very soon
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The changes in my lesion we just scar tissue. I am hoping that it is just the hematoma.
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left foot and Lori sounds like good plans. Hoping and praying for the best possible outcom
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Freakzilla, so sorry to hear of this added stress. You sound like an amazing support to your girlfriend. I really hope you get some answers soon.
Question: I am curious to know when a met is too large to treat with gamma. Anyone know
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Borscheid - I'm glad you were prepared to ask questions and feel comfortable with your treatment plan.
Freakzilla - they worried about a small area in my tumor bed before radstreatment as well but my neuro-onc team felt it was scarring and normal healing. Can they deny you SRS? I've read stories where they freaked out and just found scar tissue. My RO used LINAC on me but cyberknife and gamma knife were other possibilities. I guess I think it unlikely to regrow that quickly for your GF.
I had follow-up scans yesterday. None scans were repeated at a shorter interval (7 weeks since pre-rads one) to rule out blastic lesions. They found nothing other than prearthritic changes in my chest and shoulders. That was a relief.
My tumor bed looks like a mess to me on the imaging after the disruption of surgery but my brain swelling had subsided (yeah! With Boswellia and no steroids) and there was no evidence of regrowth in the tumor bed. I feel like the water-based fasting, DHA supplementation, and longer-term nutritional correction of my copper/zinc/iton/magnesium imbalances all helped, plus Chinese Medicine to correct other imbalances.
There is an area adjacent to the treated area on the outside of the cerebellum (pia mater?) where the radiologist thought might be indicative of Leptomeningeal disease developing. My neuro-onc team needs to convene and discuss. The first next step is a lumbar puncture anyway and I have my 3rd one scheduled for this coming Monday anyway. My RO said a repeat MRI might be in order in a few weeks but she needed to confer about it first.
I feel okay healthwise at present and boy have I done my research. I have a consult with someone involved in immunotherapy trials in a couple weeks plus I'm connected to the major players for HER2 brain mets so I guess I can rest now for a little longer until we know what we are dealing with as I've done my homework.
I'll keep you posted.
Ann
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Thanks everyone,
I'd be amazed if it was a recurrence this quick, this big. We were always told to expect changes in the resection cavity after surgery. We were also it's hard to work out anything on scans less then 8 weeks after resection. I was told to enable a SRS boost they would have to remove whatever it is. In the UK they will only treat a certain area. With whatever it is there it makes it too big.
Just got to wait until Friday now. Hopefully whatever the outcome it will move quickly.
They did mention targeted Tomotherapy. Has anyone had this done? It can treat a targeted area up to 5cm.
The two things I have learnt over the last two and a half years is don't expect anything this is an unpredictable ride. The other thing is have as much knowledge as possible so you are never put in a situation where you have no clue what to do.
Fight On!
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Freakzilla
So sorry to hear your news. Hope you get a treatment plan resolved quickly
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I have two questions
Does your hair regrow after WBR?
If yes, does it come back more quickly than chemotherapy
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my hair has grown back after WBR although it is different to what it was pre BC. I lost my hair on chemo early on in 2013 and it grew back straight and predominantly white fairly quickly. I lost it again v quickly from chemo and then went into WBR just as it was growing back. Third time lucky, I had hair loss from WBR in July and Aug 14. I cannot remember when it started to regrow but now (15 months later) it is curly and about 2-3 inches long and a bit fluffy for my liking. Friends who have gone through treatment say it will normalise.. It was less white than the previous occasion - more patchy brown and white which I didn't like so I went back to my colourist so I felt OK without a wig in the summer. It was straight/ wavy and dyed before BC. I have worn a wig throughout as I don't want colleagues to comment on various stages or make assumptions about my health.
Hope that's helpful although on reflection it seems to have been a long time. I think because my hair was my "crowning glory" I mourned the first time and now I ignore it
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thank you. This is hair loss 4 for me and feeling peach fuz
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Agness, I really hope it's not LM. I'm glad you are feeling well healthwise and that you have lots of complementary meds and supplements that aid in your strength and reduce inflammation. I think someone in a previous post said that you are an inspiration to us all! I second that!
Maureen813 - how are you feeling now? How long has it been since your last rads?
Bourshied - my rads doc also suggested 15 rounds of WBR over 3 weeks. I'm just so scared to do it.
Freakzilla and leftfoot - keep us posted
It's so great that others (Bosco19 et al) are sharing their experience with WBR. And that there is hope that hair will return!
As for me, it looks like my brain mets are growing, slowly. I'm in a clinical trial with Neratinib and Xeloda for the last 12 weeks. Dana-Farber says I'm stable but I see growing mets. No new lesions which is a good thing and no systemic disease. Just these darn pesky mets in my brain! So I'll stay on the trial for 5 more weeks and then I'll make a decision whether to stay on or drop out of the trial. In the meantime, I've got my MO looking into alternative trials/treatments for me. I can't remember the names of all the different ones she mentioned, but I'll post here once I have a chance to look back at my notes after a couple of weeks vacation.Is anyone taking anti-seizure meds? I have 3 docs that say I am asymptomatic and don't need to be on it. It worries me.
Wishing you all a happy Wednesday!
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I am fine. I was just thinking positive for freaks ills that her girlfriends lesion wan not cancer. My head is clear for now. Thanks everyone for caring
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Anyone on tykerb for brain mets? I'm not doing the chemo counterpart. I am doing the IV Herceptin. Tykerb side effects seem harsh although my medical advisors say it is mostly diarrhea and fatigue. My husband read a list of side effects today sent to him by my insurance that looks quite harsh, including liver disease and possible being fatal. It's a scary drug, but right now have no choice but to take it. I'm going for a second opinion about including maybe Gamma Knife.
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hinds feet- I was in it for 2 1/2 years. I was on xeloda at the same time. The diarrhea and fatigue were the worst of my SE. I know those sound bad but they did not hamper my ability to parent 4 kids and live my life normally. I was unhappy when my oncologist switched me from tykerb to herceptin. So I for one liked being on Tykerb. And it did its job- no new brain mets. Only had to switch because I got a liver me
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Hey can I join you here? I really need a friend...
I just had a craniotomy for a fireball met in my left brain. After feeling awful for months, I finally feel alive again. But the surgeons are not sure if they got it all and the proliferation index is not nice. I am so scared!!
I want to live so much!! I am a single mom and I love my kids so much. I can't do this to them.
Heartbreak
Lisa
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Hello split beam and welcome to the thread but so sorry for the reason you are joining us. I had a craniotomy in July 2014 so know something of what you are feeling. What have they suggested as next line of treatment to mop up any remainder?
Hope you have friends and family around for support on the ground and you will find help and support here. How old are your kids
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letranger - I am on the anti seizure med, Keppra, and have been since my met caused a seizure before my craniotomy last February. My neurosurgeon agrees with keeping me on it for the time being as I am not experiencing any side effects and I feel reassured by being on it. I also take the supplement, Boswellia. I feel really good on these meds.
Split - so sorry that you had to join us but may you feel comfort in all the info the ladies can provide you with here.
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Lisa - ugh. So sorry that you are here but these ladies are wonderful. I am so glad that surgery gave you relief, me too. Once you start to get stronger after the surgery you can normslizwith your kids. Mine are doing so much better after my health crisis in July culminating with brain surgery. Do you have help?
I was just telling them the other day at the hospital that I'm not much of a gauge for pain now having been in pain and sick for a few months, then being in pain from surgery plus steroids knocking out every other pain in my body, then rads to the head and self-imposed water-based fasting during that treatment as well. Now I have slight pains and pressure on the front of my face that seem related to the surgical disruption but I don't know, at least they don't show up as anything on my brain in. At least rest and sometimes Tylenol help. I forgot to take my Boswellia the other day and I noticed it by afternoon.
I'm still waiting for word from my docs about my MRI findings. The brain tumor board meets on Thursday or Friday so I'm expecting to hear something soon.
Is anyone on any immunotherapy trials? I found this great link to see what's on offer. Not sure how many are open to brain Mets patients.
https://www.breastcancertrials.org/bct_nation/brow...
Thinking of you all.
Ann
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Oh friends that helps like a warm hug and chases the monsters away.
My oldest son, who saved me by convincing a rural ambulance to come out on a Sunday for a headache, is 17 years old. My brilliant beautiful daughter is 15, and my little football guy is only 12 and we tell each other we love each other every night.
Today I was home alone the first time and had my pathology report to go through. I had travelled hours to go back to the neurosurgeons to discuss it, but all the poor guys could come up with was "yay, still Her2 positive!" Confronting all the disappointing signs alone brought all my monsters back.
The recommendation is radiation to the tumor bed and Herceptin IV but I can't believe that's all. What about a clinical trial? There is an expert in the local university, so I asked to be referred there. And what about intrathecal Herceptin? It seems so logical, why is it ignored? Getting it is my mission.
I have fresh air and light and joy in my head for the first time all year. I consider myself the luckiest girl in the world to have my head cracked open to join the living again. Thank you, Germany, from the bottom of my heart. But I am not done with life yet and I will fight for it.
Lisa
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Well done your son. You sound like a v close knit family and I'm sure that will help as you go through this.
Here's my motto
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IT Herceptin seems to make a ton of sense, the problem is they don't have standard protocols right now and the trials seem to be focused on visible lesions they can track. Evidently cerebrospinal flow can be a factor when introducing drugs into the mix, if there is pooling then toxic agents can cause damage. When given as doses too low the concentrations aren't high enough and it just slows progression, too high can cause neurological reactions, I think there is a risk of stroke as well.
There is an emerging treatment emerging that includes steroids, a gradualy tapering up dose, plus Topetecan as well as concurrent IV therapy with Herceptin and Perjeta. They do not know the end point and they don't appear to understand what to do when patients have PCR to systemic therapy, as in, what are the implications of treatment and might treatment be able to eradicate disease fully for HER2 brain mets.
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More about cerebrospinal flow studies from this year
Also, opposing the classical view that drugs injected into the CSF space will be washed out within short time without targeting the brain [5], recent findings demonstrate that drugs, following intrathecal application, may very well be transported throughout the entire brain.
A new look at cerebrospinal circulation [2015]
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4016637/Ann
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Not a good day.
It has deemed to be residual orrecurrence in the resection cavity. 3cm in 7 weeks. My girlfriend is in for emergency surgery now with an SRS boost in 4 weeks if all goes well.
Devastated!
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Praying the op is successful Freakzilla.
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ahh Freakzilla. I am sorry to hear that. Hopefully they get it all this time. You and your girlfriend are in my thoughts.
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Freakzilla, my heart goes out to your sweet lady. The disease pursues her but she is strong, she is your warrior princess. She is in battle now again and we wait for her to return in victory and you to kiss her again.
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Freakzilla - I call BS on them and hope that it is residual from the previous surgery. Sending all the good thoughts I can your way tonight
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freakzilla
Hoping they clean up the residual tumor and she's on the mend soon. Please keep us updated
Mauree
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So sorry freakazilla. Hope the second surgery goes okay, sending best thoughts.
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Please forgive my intrusion. I will only post this one time. It is Saturday night and I don't know who to ask. As far as I am concerned, no one knows about brain mets the way patients do.
Yesterday had sudden onset vertigo symptoms. Quite a surprise. I fell and the head-spinning was unbearable. Contacted PCP who sent me immediately to Local ER. They were quick to diagnose me with vertigo and send me home with an OTC Med for seasickness. Brain scan was done without contrast and came back "clear for stroke" as stated by nurse.
Was vertigo how you found out about your brain mets? Should I follow up with MO or first wait if the head-spinning goes away?
Sending a hug, and a big Thank You in advance for any responses. May your mets go away and leave you alone.
Nisa0
