Brain Mets Sisters
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Hi Clare, Sorry you are joining us here. Let us know how your appointment went today.
I had my first post radiation brain MRI this afternoon and should hear back about the results in a day or two.
Last Thursday the Ocular Oncologist injected Avastin into my eye because my vision keeps deteriorating. My eye became really swollen and bloodshot and still looks weird. Vision not getting any better. They said the usual course is once a month for three months but I don't think I'm going to do it again. I feel like it has really set me back overall because I haven't felt like going to dance or yoga with this ugly eye thing. Did march in the Pride Parade on Sunday though! Just wore sunglasses!
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Hi everyone! I just had my first WBR today. Glad to find this thread.
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Hey to everyone! Hope all is well. I'm having a time of it. Noticed I wasn't feeling any better. When I went to receive my first gemzar my hemoglobin was 7,1. Received 2 pints for transfusions. Turned in stool sample Very positive. So admitted to hospital (first time ever) they found d I hd a bleeding ulcer from all the steroids. It had already started to heal. So good news. Out of hospital next day. Went to get gemzar - today. Hemoglobin again. 7.2. Transfusion tomorrow. They think maybe the Gemzar dropped me. Idk. All I know is I'm ready to feel better. I am 2 weeks out of my wbr. Request all my brain sisters thoughts and prayers.
I hope you girls that r having the ear problem, I hope that goes away or an ent can help. Has to be aggravating.
Wishing strength for everybody and feeling stronger.l
love you guys
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Hi chele, How many treatments do you have planned? How did it go today? For me, the first day was the hardest. After that, it became almost routine.
Pb, That totally sucks! Only two weeks out of WBR which is about when the fatigue peaks. Big virtual hug to you and sending much love and healing power your way!!!
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Quick question- has anyone had issues with passing out after the full brain radiation? My RO lowered my steroids and then the headaches started back up so they upped them but I have had 2 episodes where I was out in public and just passed out. It comes with an extreme headache and I can't function for 2 - 4 minutes but today I was at my garage door and ended up falling backward in my driveway. My wig left a nice mark on the back of my head too. I actually had to laugh but I am hoping this is just edema and it will pass. I am not scheduled for a 30 day MRI follow-up yet - hoping they schedule that soon.
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Sherbab,
I never passed out but I was only on steroids for a few days and at a very low dosage. Perhaps it's more of a steroid SE than a WBR SE. What did your doctor say about it? Sounds very scary.
Hugs, Susan
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Susan - how were your post radiation mri results?
I am moving forward with SRS rather than WBR, next Tuesday. Both my medical oncologist and my neuro/radiation oncologist are skeptical about the meninges involvement. So we are starting by targeting the largest met and hoping that the Xeloda works on the smaller mets.
I was fitted for my immobilization device today.
Thanks everyone for being here. Clare
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Hi Clare,
I haven't gone over my MRI results with my RO yet but my MO seemed to think it was as expected. From what I can decipher of the report, the size of the tumors is about the same but there are "interval cystic changes likely due to treatment effects". One new 2mm tumor in my left lobe but we, of course, don't know how new. Hopefully it was there before or during radiation treatment. From my understanding, it can take awhile for radiation to work and the tumors can actually get bigger due to inflammation in the short term after treatment. The brain is very tricky, as you know, so you can't get any information such as SUV activity like with a PET/CT scan. I don't think there's any way to tell if the tumors are dead or alive. All you can do is wait for your next scan and see if anything has grown.
Good luck on Tuesday! Let us know how it goes. How many days of treatment will you have?
Hugs, Susan
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gotta a question... i get chest and abdomen scans every 3 months but, other than a few yrs ago when first diagnosed, |I havent had a brain scan. Why or how did you find yr brain mets? I wonder if I should ask for a brain scan with my next scheduled scan? what do you think?
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Has anyone had any luck with Xeloda working on brain mets?
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Got the same question as ''thisime''...wondering how your diagnosis of ''brain mets'' came about. I never had a ''brain''scan.
Had several MRI's & CT's of chest,abdomen, pelvis, bone etc.
Any symptoms ?? or did you have routine brain scans?
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Hi there,
I had no signs of a brain tumor. On US we found liver mets (which was lucky as there was no reason to US for mets to the liver) which led to my initial brain scan. I don' tthink they scan your brain unless you have symptoms or your mets have spread/grown. I now get brain scans every 3 months after receiving gamma knife treatment to 2 leisions. I have been on a combination of Tykerb and Xeloda now for 18 months. I have been stable with no new mets to either brain or liver. I think that Tykerb is what is supposed to cross the blood brain barrier. Not sure about Xeloda. But if Xeloda is working on the mets to other places in your body it is surely keeping it from spreding to your brain. So Xeloda is helping me one way or another.
You can ask about a brain scan but I am guessing that they will say that unless you have symptoms or the cancer is growing in other places, there is no reason too.
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leftfoot...thank you for the info.. I am on a clinical trial ''Paloma 3"...& receiving Faslodex injections. No other meds. But since July 1st, I have experienced some constant nagging pain @ the back of my head on one side...bony area of lower skull L side.. Pretty annoying..& worrisome...I will ask my MO when I see her in 2 weeks. ( I have mets to L2 spine & R hip). Also have several mets to liver. ...
I guess not everyone would have symptoms for brain mets. Just ''plain'' worried...I guess!
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My MRI was ordered because I was having balance issues.
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I didn't have any brain mets symptoms but I had a tumor in my eye so they did a brain MRI and found more than a dozen tumors/lesions. If you are having head pain you should definitely talk to your MO. A friend of mine has bone mets and she developed a skull tumor. This can cause similar symptoms to brain mets because of the pressure on the brain. I also have a friend who had a benign skull tumor and had it surgically removed.
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Lou4of7- If you are worried call your doctors office tomorriw. No reason to wait two weeks when you might be able to address it now. I would think that since you have mets they will want to address your pain in your head. I am do sorry you have to endure both the actual pain and the worry that comes with it. I hope you get your answers sooner rather than later and that it resoves itself with no additional treatments
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chele, SusaninSF, leftfootforward, ....thank you for your info & support. I did speak to the clinical trial leader 2 days ago
(I am on the Paloma-3 clinical trial...hoping to be on the new med....it is a double bling trial).
She said she would mention it to my MO. Maybe they can include some test for the brain this coming week when I have my CT of chest,abdomen, & pelvis done on Thursday. So far the pain is a 2 on a scale of 1-10, but constant. It is more of a worry since it never goes away.
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The constant pain would worry me too. I know one of the questions they always ask me is if I have headaches. I never did have headaches though, but I bet your MO will interested to hear of your pain. I have five mets scattered in various places. The symptoms would depend on where your mets are. Best wishes to you!
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Hi, my first post. Was diagnosed with triple negative bc in Jan 2013. All clear scans up to Apr 2014. Vision disturbances in June led to an MRI. Diagnosed with brain mets 25 Jun and just had surgery to remove the dominant lesion (2cms). Supposed to start WBRT in 8 days then chemo. Helps to hear I'm not alone in this scary place.
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bosco, I'm similar to you. Diagnosed jan. 2013, triple neg., Did 6 months of chemo, DMX, 9 weeks of radiation and was considered complete response to chemo and pathologically clear. March of this year started with headaches and had emergency surgery to remove large brain tumor and then stereotactic rad. Last week had followup MRI and new lesions were seen. So I'm scheduled for WBR. Also have large painful subclavicular lymph nodes so really worried about that. Getting PET scan this week.
I'm really depressed and saddened by this sudden and quick turn of events.
To boot I'm scheduled to head back to work tomorrow after having a year off for treatment. I have no leave left and need benefits to pay for treatment. Husbands benefits are prohibitive. And we make too much money for me to qualify for Medicaid.
I'd say I'm ready to throw in the towel, but that would just make more laundry.
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we do sound similar cases - which is a first for me. I know just what you mean about the sudden turn of events - felt I had just started breathing again when I finished chemo end March and had clear PET scan end April. Sorry to hear you must go back to work tomorrow.
Still, let's not towel throw - just got to get back on top of this thing. ..
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K-Lo! Where have been? Long time no hear! Honestly, I was worried.
Fiercebluebird, So sorry to hear you have to have WBR. I used to have those large subclavicular lymph nodes too that caused me to cough a lot but at my last PET/CT they had cleared up completely. For the last week though I've been coughing again so having a chest CT and blood tests tomorrow to check out what's going on.
Anyone else experience a lot of fatigue well after WBR? I was feeling quite good a few weeks after WBR. Then, about 7 weeks out (last week) I started feeling really fatigued. It was a struggle to just get out of bed. Probably the worst I've felt since diagnosis.
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Susan, wishing you luck with your next tests. I'm so worn out already. I've had radiation pneumonitis and scarring to my lungs from breast radiation and pneumonia! I am starting to feel like I can't breathe.
Dreading the radiation fatigue once again.
I keep wishing I had started on Xeloda. But they won't do xeloda with brain radiation.
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HI Fiercebluebird - saw a beautiful bluebird on our deck in VT yesterday, also a spectacular indigo bunting!
I'm having my first SRS tomorrow for brain met. My oncologist had me do one week of Xeloda before the procedure and I'll start the Xeloda again 24 hours after the procedure. I don't know if you can sneak some xeloda in around your WBR. How many treatments will you have? Clare
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susaninsf - my onc tells me worst bit of WBRT will be 6-8 weeks after. Hope the tests tomorrow are good.
FBB - hope your day was not too bad if you went to work
Clare - good luck with the first treatment
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Hi. Everyone I'm quite new, after having breast cancer in July 2012 I was almost 2 years later with secondary bc with 2.7 cm brain tumour (and lung mets) which was successfully removed with margin 23rd June 2014 and 10 sessions of radiotherapy starting 24th July 2014 just where the tumour was. HER2 positive and herceptin starting after radiation for my lung mets and swollen Hilar node. Hugs to everyone. I'm keen to hear similar stories, positivity and interested how anyone found side effects of radiotherapy in one area of the brain (mine is cerebellum) as opposed to while brain? Thanks lots x
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KARRRREEENNNN!!!!!! EVERYONEEEEEE!!!!! Hi!
I haven't been on forever!!!
Just saying hello to you and I hope you're all doing well.
My last MRI and CT have been good. A lot has happened since March, but it's July now and that makes me happY!
Much love, Jill
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Thanks Bosco19!
So my MO ordered blood tests and a chest CT scan. I went in to do the blood work and they messed up my vein on the first try. I was so upset I broke down in tears and asked that someone else give it a try. The second person did a good job but I was so shaken by then I couldn't bring myself to do the IV for the CT scan so I cancelled it. The thing is, this same place messed up my IV last week when I went in for an eye procedure and I still have a big black and blue mark on my arm. Now I've developed this huge phobia about my veins (I had a lot of it before these two incidents). Not sure how I will get through it next time. I told my MO that I didn't want to do the chest CT scan unless my breathing got worse or my blood work looked worse. Had a body PET/CT a month and a half ago and will have another one in a month and a half so I don't think I'm going out on a limb here. My coughing was getting worse so she ordered this interim scan.
Should I try taking anti-anxiety meds before my next procedure? I've never taken them before.
Thanks for any advice.
Hugs, Susan
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Had my SRS on Tuesday - all went well. I didn't know about the anti seizure drugs that I had to take after wards so I've been asleep for a day or so but don't feel any side effects. Started my xeloda again last night 24 hours after the procedure. It was an amazing experience ---- definitely the brave new world in the the neurology center. Clare
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