Brain Mets Sisters
Comments
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Gail - sorry to hear about the hospital stay and the rash, hope you are feeling better soon. I get what you mean about feeling like a beached whale between the fluids and steriods, not fun.
Formygirls, I'm so sorry. I logged on tonight hoping to hear some better news. I really hope that PET gives some good news of it just being necrotic changes, not new tumor. Either way, we are here for you 110%.
Karen - hope you are still hanging in there post-op, please take it easy.
I braved it through day 4 of 5 for cyberknife today. I can't for the life of me figure out why this makes me so miserable. I have a few quick minutes of terrible taste/smells when that zapper hits my sensory nerve, but it is over fairly quickly. I took 2 ativan (shhh, don't rat me out) today and it helped, but I think I just need to buck up and power through tomorrow. I'm usually pretty good about not getting spooked by treatments, there's just something about this one that really pushes my buttons...or maybe I'm just sick of all of it in general. Since my brain surgery in July, I've had 6 brain scans in 6 weeks and I've been hospitalized twice for severe headaches and uncontrolled vomiting. I'm sick and tired of being sick and tired.
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Nancy,
I know what you mean about being sick and tired of being six and tired. six scans in six weeks is a lot ! I agree, the whole cyberknife thing freaks me out and for some reason, my second set of treatments in July which lasted for five days were much more harder for me than the first time which was just one day. My ins refused to pay and i did self pay and it was probably a waste of money. Today they talked about WBR and I really do not know what to do next. Finally got stable scans in liner and lungs. I hope your last tx goes well and you can celebrate with a normal weekend.
Hugs to you.
Karen,
Hope you are doing better with your recovery.
Gail,
I get a rash too but do not know if it is Xeloda or Afinitor. The steriods help but they make me feel awful.
I want off this roller coaster but really want to stay on the ride forever. I know you ladies know what I mean.0 -
Hugs to you to you both. I hate this for all of us. Hope you all hang in there-it will get better!
Gail
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formygirls - thinking of you as you contemplate your next steps, so happy for your stable liver/lung scans, but you've got to make additional decisions on your brain. I feel like with brain mets we are fighting two battles, one to keep our "systemic" disease under control, the other to treat the brain. It is so discouraging.
At least we've got each other on this thread, it really helps. Hugs to all y'all.
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Karen I am so glad to see your posts and hearing about visual improvements each day. Hugs to everyone.
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Karen, I am so glad you are home, and it sounds like you are doing better every day.
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I'm off the BKM120 trial because of my rash problems, MO says time to move to WBR. Isn't it cool that I know all these fun acronyms? LOL....really I'm sad because it seemed to be working but my body wasn't happy with it. I'll be joining you other ladies doing WBR-any tips welcome.
How are you NancyH?
Hugs to all, Gail
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I posted here in June and maybe July, I had WBR in May. Follow up scans yesterday with the Dr, showed all the little tumors gone and the bigger ones that were left had shrunk or stayed the same. Dr. thouht the scan was great because there were no new tumors and none of the old ones, still visable on the MRI, had grown. Another MRI in Dec. All of you support me with your posts,whatever they are about. Good luck to all.
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Thank you hotandcold-that is some good news-congrats!! And gives me hope-thanks for brightening my day!
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The reason I haven't been around for a week or was because I was posting on the wrong thread which I started 2 weeks ago ranting about how my OR was delayed so many times. Maybe they didn't do such a good job on my brain surgery after all.... lol.
I'm going to be starting SRS soon (I don't know if its the same as Gamma Knife) but I know each tumour that has been removed (2) and a 1 cm one that wasn't will be given this treatment directly.
Haven't had my appt with radiologist let so don't know what it entails. Do you gals know how many treatments are usually done, or is it based on individual tumours and size.
What are the side effects? Normal radiation stuff? Or brain stuff?
Last question, for those of you that have had craniotomy are you still having reading difficulties. I know I'm asking a lot, cause I only had surgery 14 days ago, but I'm an avid reader and anxious to get back to it. Please give me all the dirt girls, good and bad. Thanks.
Hugs, Karen
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Hey Karen,
The canuck docs like to use SRS rather than Gamma knife, so I don't know if it's the same thing. My docs here at Sunnybrook in Toronto call it SRS.
Second, everyone is different, so I just had a high blast of SRS once. They won't do the surgery because of the location of the lesion. Too deep. Tooo risky.
Right now my problem is the swelling from the dead tissue, so I'm on to dex. YIPEE!!! I'll fill you in more after I speak to my onc next week.
Side Effects of SRS are just weird and trying to find out what's your new normal. If it's zinging, or dizziness, or headache here and there, or nothing at all. It's been a year for me and I'm still trying to figure out...is this my new normal? What? I reboot my head like a skit on SNL that was hilarious. Everyone is different.
Laters! Jill
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I like your post Jill, coupled with humour its easier to take. I had surgery 2 weeks ago and am now started to get some really weird hallucinations. Like eyelashes coming off a person on TV and going onto my walls. The pillsbury dough boy the size of a stamp skipping across my vision and then fading away, etc. It started off with Star Holograms dancing around the living room walls. Just really weird stuff. I hope it eventually goes away. My neurosurgeon took 2 lesions out and left the 3rd one in. But the one causing vision problems was deeper than they thought until they got in there and he thinks these hallucinations will go away. I'm am also an avid reader and unable to read since the middle of the sentence keeps disappearing. Just wondering if radiation will make these things worse.
I ended up in the the hospital last night with breathing problems because I have lung mets and they took me of the Dex to fast. Now back on Prednisone and Dex until I have my radiation. Don't know when that is yet.
Hugs, Karem
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Hugs Karen,
I have been offline for a while but am trying to catch up. Thinking about all of you
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OK cancer, time for a break! Went for radiology consult today and found out the round table doctors sugggest WBR and SRS (which is comparable to Gamma Knife) in Canada. I've never heard of craniotomy, WBR and SRS. How the hell much can a brain take.
Has anyone else had this much work done on their brain. Seems kinda scary to me. It all starts next week with SRS on Thursday 30% chance of seizure after radiation.
And then WBR the next week.
I'll keep in touch with you gals, but in the meantime, has anyone else had all this done?
Hugs, Karen
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Karen,
You have just the 3 lesions correct?
I thought that you can get away with only SRS with 3 mets, so you wouldn't have to have the WBR. Is this correct?
I have given the option to do WBR or SRS, but the doc recommended the SRS.
They didn't tell me that I could have a seizure during SRS, so I wasn't expecting anything like that.
My lesion cannot be removed from my brain, so no craniotomy for me. Sorry if I'm repeating myself here, you know.....brain issues for some reason.
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Hi Dearjilly - Yesterday was pretty intense but a long of information. The group I saw is cutting edge therapy. Because my tumours showed up so fast and the one so big (3.2 cm). My onc says there are bound to be many more microscropic ones too, hence the WBR. I have one left that they couldn't remove due to left temple. They didn't remove that on because its at a seizure point and removing it could start them off permanently. The radiation knocks the percentage down to 30%. They also said that the prognosis is much better if they radiate the tumour prior to seeing it. So much information, but my onc says these guys are really good. But that doesn't make me feel like I won't have side effects. I mean, how much trauma can the brain actually take before the good cells are affected?
Hugs, Karen
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Karen,
Have you started WBR yet? Let us know how it goes.
I had a PET Brain today and more bad news and more tumors. You know it is bad when the rad onc wants to see you first thing tomorrow, before he leaves for the airport! I will be starting WBR very soon. I feel this will be the end of the road for me. I have already had SRS twice and have to stop all my chemos for three weeks. Liver, lung and bone tumors should have fun. The neuro onc started me on a dementia med today to help reduce memory loss during WBR. I knew this would all end but today it feels very real.0 -
my brain PET yesterday showed new brain tumors. I start WBR this week. I have had SRS twice and my team had been saving WBR for a rainy day and well .....it is pouring! Nervous about stopping chemo. Hopefully my liver, lun and bones tumors will not party with no chemo. My neuro onc also started me today on dementia loss medication to slow memory loss due to WBR. Not excited but just want to get through it given that I have no choice.0 -
Thata girl, formygirls. Once the decision is pretty much made for you just forge ahead. I know you paid out of pocket for the srs. And have been through SO much over the past several months. I didn't realize you had to stop chemo with wbr. I'm not excited about this either...not in the least. Wish I could be there to hold your hand. You're a brave young woman. We're all with you.0 -
Formygirls, good luck! I hope WBR knocks out every little cancer cell still in there!
Jill, sometimes they do chemo and WBR at same time, but not usually. I had WBR while also doing carbo/Gemzar. They lowered the strength of the radiation and had me do 16 sessions instead of 12.0 -
thank you for your support. I am scared and this means a lot. nobody understands. brain met rads. Always freak me out. I will be getting WBR in 10 sessions only as they are worried about leaving the rest of my body without chemo for too long.0 -
formygirls, sending my very best wishes and warmest hugs to you right now. I know it is scary, but as you said so perfectly, the rainy day is here and it is time. Praying for smooth treatment and good results. (((formygirls)))0 -
Formygirls praying for you that you will get through this with good results and minimal side effects.0 -
formygirls- prayers and hugs to you.0 -
For-your-girls, your name alone is inspiring.
Please share name of dementia loss medication to slow memory loss due to WBR???
I had 5/10 WBRT this past week. Stumbly and dizzy sometimes. Not as bad as I recall Apple and Reesie reporting.
Had first MRI since January ok, and it showed up a 4.5cm mass, but they are taking it mellow. Will likely have a "boost" of SRS. I'm kind of apathetic since so much has been reported in 3 years and so little of dire consequence has affected me/us. Also no chemo all that time. So , so what? I'm gonna ask them to look at chest as there are palpitations and the original mediastinal mass could be worse than brain mets.......
As I told Katherine /English Mjaor: so much has been reported in 3 years but with so little real life consequence to us.... Again, we take it mellow. And am super vain about the decadron which they claim can make all the difference. Want me to take 8/day.
Headaches are mild to moderate here. How about yours? What's your treatment of choice for them?
Thinking of you K0 -
KLo,
I start WBR tomorrow. Last week was dry run and planning. The dementia medicine is called namenda and I showed it to my neuro onc after reading about it on this board. This is the link http://www.cancer.gov/ncicancerbulletin/111312/page3
Do not know if it works or if I like this drug. I feel dazed but do not know if it is the meds or mets. I have stopped chemo while doing this. I am on decadron but only 4 mg a day. I am nervous but accepted that it is time. Will lose hair yet again, probably the last time. my oncs keep telling me the fatigue will get much worse.I am thankfully not symptomatic yet and no headaches. I hope this week goes well for you. Strange the we both have been saying no to WBR and now going through it at the same time.
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all,
Thank you for your prayers and thoughts. I hope this works and does not damage me much. Love and hugs to all.0 -
Best of luck formygirls!! Thinking of you.0 -
Haven't been following this thread, but thought I'd checked in.
I was declared pathological Complete Response in March 2013. After herceptin/taxotere/perjeta, they found no evidence of disease in my breast or liver (where they'd found it in August 2012).
A brain MRI on August 10 found at least twelve tumors in my brain with three being fairly large and located near ventricles. The most concerning located in the cerebellum and causing inflammation pushing my brainstem through the foramen at the bottom of the skulls and causing the headaches that made them check my head. Additional scans in August showed the rest of my body was disease free.
After briefly considering GammaKnife and traditional neurosurgery, they decided on wbr - 40 Gy over 20 treatments. As soon as they saw the MRI they put me on decadron (steroids) which stopped the headaches, but eventually resulted in horrible insominia, which was infuriating until I was finally weaned off the steroids. I've also been taking the memantine (Namenda) to mitigate cognitive decline
I finished wbr on 9/11, working full time with a full caseload (I am a speech/language pathologist) throughout treatment. I did lose all my hair, starting at about the 15th treatment and it shows no signs of coming back
I got some nasty peeling skin on my forehead, which cleared up except for one small sore on what used to be my eyebrow. I've also gotten some problems with my ears including incessant tinnitus.
Fatigue hit the week after wbr ended. It was really bad for 3-4 days. Now it's barely manageable. I need to talk with the doctors about how long the fatigue is likely to last because if it keeps up, I'll need to reduce my workload.
I go back for more MRIs next week. From there we will make decisions about follow up with GammaKnife or neurosurgery for any big lesions that are left.
I've remained on the herceptin infusions every three weeks throughout all of this. After deciding a course of action with the RO this week, the MO wants to consider starting me on Tykerb because, unlike herceptin, it will cross the blood/brain barrier.
So, for now, I seem symptom free. Side effects form wbr of moderate fatigue, hair loss, and mild ear problems persist but are more or less manageable for now.0 -
Stopping in for snapshot. Surely Nancy has had the outside-aggressive tx: surgery followed by SRS. Others of us have been pending WBRT, which I consider a rough rock to lie on. Gamma seems like the royal tx.
Anyway, having last 10/10 on Friday, we got got the "what's next" talk. Hair should've already been falling out and will do so this week. Gonna try to weasel a good cut from the hot guy in town, play the card etc. Last time DH buzzed hair and it was pathetic. Saving cut swatches bc the colors turned out to my liking this time. In THREE months, when hair grows back, we start over.
FMG, Anne,and I have been holding out on WBRT, correct? So here come the doozy-delays of SE's.
The top Tx for scalp burn is Aquaphor here. So, I'm picturing alopecia with Vaseline allover. Not very sophisticated to me. She told me I can have Silvadene which was heavenly years ago on burnt neck. They cave into quirky patients, right?
Please tell me if you find the better burn ointment, OK?0
