Brain Mets Sisters
Comments
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Karen,
I'm so sorry to hear about your news. My thoughts and prayers are with you as you continue to fight this. I also have three tumors with one mesauring 3 something. Meet with the radiologist this week.
Stay strong...Lisa
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Don't know yet Karen.. will find out this week
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You stay strong too Lisa, we're in this together right now. I have an appt with the neurosurgeon Monday (tomorrow) at 2:45. I'm on blood thinners, so I doubt surgery will be this week, I think you have to be off of them for at least a week. I don't know which is worse, the waiting or the actual surgery. As Nancy said the though of brain surgery can be a very daunting process. But please let my know what your options are and I'll tell you what they said to me.
Positive Vibes,
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For those of you who had SRS radiosurgery did you lose your hair? I had SRS last May and did not lose anything. I had another five rounds end of July and yesterday all my hair started falling. It is not completely gone but my white sheets and pillows are full of hair. It has been three weeks since radiation ended so I was not expecting this. This is the third time I am losing hair. I am on Xeloda, affinitor, tykerb and Herceptin and none of them cause hair loss. This has taken me by surprise.
I hope everyone is doing ok.0 -
formygirls,
Sorry to hear about the hairloss, dang it. I didn't lose hair w SRS because the lesions were deep. My understanding is if they treat close to the scalp (like with WBR where they treat everything) you'll lose it, otherwise it shouldn't really happen other than maybe a spot or two where the rads hit. Give 'em a call tomorrow...hopefully, it won't all fall out.
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Had my third scan post gamma knife in December today. for the most part the new scan was good. There was however some growth in one area that they read as due to necrosis. My oncologist however seemed a little apprehensive. I don't konw if it is just because he likes to be cautious or not. So I will have another scan in 2 months instead of 3. I hate this disease. My scan looks like someone who has had a 99% response to gamma knife and yet a slight growth sets off all the alarms again. You never can feel 100% good about anything. I always have that nagging feeling. I know that it is probably necrosis but there is still that small chance it is not.
I am trying to focus on no new mets and that it is still very small. I really have nothing to complain about. I am doing fine. I just hate that never ending nagging that something might be there. Most days that feeling is absent. But some days I just can't get rid of it. Guess I should get used to it as I plan on living for a long time.
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Leftfootforward,
SAME sorta thing happened with me. GK Oct. 1st of last year. Rad Onc thought, it's growing and it didn't work. I wasn't convinced, and that's exactly what I told my surgeon when we talked about me getting a biopsy. We decided to wait and watch. That was 5 months ago. Now the RO says he thinks it's necrosis. I go in next month for another MRI to see what's happening inside the old skull.
I get it about trying to focus and the never ending nagging. My met took away half of my vision, and the docs say it probably won't come back. I open my eyes every morning, and there it is. Everyday reminder. It's always nagging. Can't drive. Can't do much really. Anyway, I try try try to stay as good as I can. I have to tell myself that I'd rather lose half of my sight then my life. So cheers to GK and WBR, and hope for good, new, statistics because the proceedures are the best things since sliced bread!
Much love and cheers to living for a long time. I'm right with ya!
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Hi ladies just had the first clean mri in 6 months i kept getting new ones ( 9 total) the last one was in my pones so they did 5 treatments. also put on steroids about 2 weeks before srs i was going thru breast radiation then the srs i lost some hair mostly in front hope yours stops soon fomygirls
good luck to those just starting love & blessings to all
chris
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Man, they sure don't rush things in brain surgery. Was supposed to be scheduled for a crainiotomy within 2 weeks of finding 3 tumours, largest one about 3.2 x 3.4 cm. the others 1 cm. Surgery date now 4 weeks from the date they were found. Soonest I can get in is on September 10. I can imagine all kinds of things in a month's time. Don't quite understand the "non-urgency" they seem to displaying.
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Karen, it's all about money...big budget cuts in our health care system. I was floored how un-urgent my BC was compared to the USA timeline. My BS knew I was liver Nov. 17th and I didn't start chemo or see my onco till first week of January this year. I went from several mets under 2cm to "my liver is full of cancer" in 8 weeks....I was considered "urgent" and it took almost 2 months before treatment started.
I can't get Perjeta in Ontario even tho it's approved...my onco said the "funding" wasn't approved so he just told me Friday..."to bad you don't have a drug plan"...geez...I'm her2+++ we know where it's going next 😟. Jo0 -
Nothing like going for a bone scan on the head, having the dr. redo each side over again (feeling paranoid) and then having two clerks walk into the washroom while you're in the cubicle talking and about me "and she has brain mets too!!" seeing my shoes and shushing each other. HMMM that can't be good news. How much worse tho can it be than brain mets? Are skull mets worse or just complicate the matter?
Now I see why they tell techs to remain tight lipped. Can cause a lot of anxiety I don't need right now.
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Karen,
Those techs should be reported. I hope the news is not bad. But once I got brain mets, after liver, lung and bone I adopted the attitude of how much worse can it get and how many ways can they kill me. I can die only once. I hope your news is ok and they were just being careful and your tx starts soon.0 -
Hi Formy - Talked to my onc today and he was pissed. He phoned right over to the hospital and demanded that all techs and secretaries be retrained. There is apparently a criminal charge for doing something like talking about patients in the bathroom. He was very apologetic to me and normally a very sensitive huggy guy but that really set him off. I did find out that my mets are active again. Along with Crainiotomy on September 10, Gamma Knife afterwards, and the chemo for the bone progression. Sounds like a fun few months, Eh? Don't know if I'm going to make my planned vacation to Phoenix on November 2, but hey who knows, with a positive attitude and a good doctors it may happen. But they don't seem to positive about the prognosis. But I've lived through 2 doctors and 1 oncologist already .. so who knows. If anyone out there is reading this please send positive vibes on my surgery date September 10, its a very overwhelming concern. I hope the rest of you are doing well.
Thanks, Gals
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Hi Karin,
I don't know where everyone has been this last week, hopefully enjoying the wind-down of summer and getting kids back to school. But I did want to tell you that my thoughts and prayers are definitely with you as you face brain surgery, radiation and chemo all around the same time! And don't worry about any predicted prognosis because nobody really knows. They gave my daughter 2-3 months and we are now coming up on 4 years with a good quality of life. May you be surrounded with love and support during this time.
Marilyn
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Aww Marilyn - Thank you for your well wishes. Just went for my 5 hour preadmission today. Long Day. Did you daughter have brain mets from mbc? I go for my surgery on Tuesday and one of the greater risks during surgery is pneumonia since I have a right paralyzed diaphram we need to get that lung working asap after surgery. Thank you for your love and support. It means a lot to me and I'm trying to stay positive.
XOXOXO Karen
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Hi all,
This is my first time reaching out to this group and hoping to see that my WBR experience is 'in keeping' with that of others - it seems that in my almost 3 years battling this the brain mets treatment with chemo is by far the most difficult thing faced.
I completed 10 round WBR on July 10. On Navelbine weekly since the 12th. Just switched to 5FU Weekly since my markers all have doubled since. All the scans (Brain MRI, Abdomenal, Chest CD) show positive results though, so not sure what it driving the markers.
Long story short - everyday is a challenge with pains that seem to move to various parts of my chest, back or abdomen. Sometimes meds deal with it fine, sometimes there is no impact! Sleep is an issue. Being treated for a yeast infection in my digestive system which seems to be easing some of the pains. And Fatigue has just taken over my life. Iron supplementation (IV) and Procrit shots are helping but can't seem to get over the hump and have any lasting impact.
I heard that the WBR treatment takes months to recover from and so praying what I am facing is simply this - recovery issues. Would love to hear your experiences and how you dealt with the challenges. \
Bless You!
Jami
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Karen2012: Yes, my daughter Suzanne, deverloped her brain mets from her breast cancer. On diagnosis she had breast ILC with mets to the liver and bones, like you, and then later, to the brain and to the leptomeningeal membranes. She has been battling since Nov. 2009. She had a minor brain surgery to place an Ommaya port and so gets Herceptin directly into her brain. I see you are HER2 neg but some studies now show Herceptin can have affect on HER2 neg cancers. Like you she developed pneumonia but not from a paralyzed diaphragm. Many, many people prayed for her and I will be praying for you!
Blessings,
Marilyn
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Learner: Sounds like recovery issues to me. WBR is like being hit by a truck and fatigue is a real problem.. If you are still on steroids that could be causing the problem with sleeping. Maybe your doctor could reduce your dose? or maybe give you some sleep meds? I agree that recovery takes months. But it does get much better. I will be praying for you, too.
Marilyn
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Thanks Marilyn - You're story is very inspiring. Hugs to your daughter and thanks for the positive remarks. Surgery is tomorrow morning. Trying to stay distracted. They will test the tumour to see if it's changed to herceptin (fingers crossed). If not, I will ask my onc. if I can try it anyways.
Karen (Hugs)
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Thinnking of you Karen.
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Karen,
Thinking of you and hoping for the best at your surgery tomorrow. All of us are holding your hands,0 -
Aww thank you so much .... means a lot to me. How can anything go wrong with all the positive vibes and people pulling for me.
(((Hugs)))
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Karen - best of luck with your surgery, thinking of you!!
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Karen, thinking of you as you go thru surgery this morning and surrounding you with positive thoughts
Marilyn
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Hey all - just dx with brain mets last week (already mets to hip, lungs, liver). Have now had 4 sessions of WBR with approx 13 more coming. Been having some nausea and wondered if anyone else had this se from WBR?
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Good luck Karen! Thinking of you. xo
Marilyn, how did your daughter get the Ommaya port and Herceptin directly into her brain? This makes me want that too! I have one brain met and it was tx'd with GK last year.
Anna, my only symptom was loss of vision. I didn't have WBR though.
Jill
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Hey all... thanks for positive thoughts, but aggravating, surgery postponed again until Sept 13. Without so much as 14 hours notice probably wouldn't have got any notice if I hadn't phoned for an OR time.
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Oh Karen, I'm so sorry, how frustrating!! Sending nothing but positive thoughts your way. Have to say, I was shocked to see your name pop up on the "last posted" on this thread as I was assuming you would be in la-la land post-anesthesia at this point. Take care!
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Dear Jilly: Suzanne was at UCLA when she was so very ill with leptomeningeal mets. Her doctors rushed her into surgery for the Ommaya port and she started on Herceptin via that route. I don't know what they had to do to approve this since it was still a very unknown procedure. When she transferred to Cedars Sinai due to insurance reasons, they had never given it and had to be trained in it's administration. It is still not used widely except in big medical centers and clinical trials are just now being done. To my knowledge it is considered just for leptomeningeal mets but I know of one man whose wife is being treated out of the country for deep brain tumors also with this method. He posts here sometimes under the thread "Intrathecal (IT) Herceptin for Brain Mets.' His name is Mario. He is now more active at this site: http://her2support.org/vbulletin/archive/index.php/t-54229.html, where he talks about his search for the treatment and his experiences with it.
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Karen....T^%&$#$%&^%! ARGH! I'm thinking about you. I'll be thinking of you during my MRI on Friday.
SBIDALIA, thank you thank you thank you! I love these sites so I can gather all the info. So thank you!
I think I've spoken to Mario on her2support before.
I even emailed someone in Paris, but it looks like there is nothing happening for IT herceptin/or pergeta yet.
Cheers my friends, Jill
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