Brain Mets Sisters
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hi Lilon,
Just letting you know I'm going through the fatigue aspect of WBR right now.. I'm wiped and I have a very sore band around my abdomen that I equate to the inflammation from the steroids..
I know from my stereotactic radiosurgery in the summer that my nausea and fatigue had a definite beginning and end.. here's to hoping that the end of not feeling well comes sooner rather than later.. in the summer it lasted a solid 10 days, that started about 2 weeks after my radiation.
I'm
3 weeks post now and yesterday was a good day.. and today my worst day..
I hope your mom gets feeling better soon.
Big hugs for all,
JoJo
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JoJo, I hope you are feeling better soon!
Lilon, I hope your mom continues to improve now that WBR is done.
My routine, 6 month brain scan is on Monday. I'm starting to get anxious. Every little ache or pain makes me wonder if it's mets. I'll be glad when Monday is over. I'm so thankful my neuro onc has me get scanned at 9:30am and then I see him for results at 11:30am. No painful waiting. Much love and healing thoughts to all of you.
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Goodie fingers/toes crossed!! It will be an MRI right?
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I have my fingers crossed as well Goodie. Best of luck on your scans. BTW I don't blame you for being nervous. Everytime I have a stiff neck, my mind wants to blame my brain BUT, I have had a stiff neck for years and am arthritic. The mind just goes where it wants to.
I recently came through my last set of scans NED. No mets in the body, brain was stable as well. Quite happy on this, will take this pass.
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Hi ladies! I had my first MRI since WBR a few weeks ago. Originally I had 10 tumors, now I have 6. Four of them dissolved, and the remaining are smaller. Of course I was hoping they would all be gone, but at least no growth and no new ones! Next step, cyberknife. I have a high definition MRI next week to prepare for cyberknife. Can anyone who has been through cyberknife let me know what to expect?
Mara, thank you so much for all your advice and for letting me know what to expect with side effects from WBR. I ended up getting all the ones you mentioned, nausea, vomiting, loss of appetite, fatigue. I am just now finally feeling better. It was rough, but I got through.
Thank you!
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NicNak, good luck with your cyberknife. I had three days of it during the last week in January and they treated 7 tumors. If you don't like being confined, the mask is the worst part. I don't care and was very relaxed through the whole process. It helped that my tech was a really calm and relaxed person who never rushed anything. Each session was about an hour of actual treatment. They don't want to make you lie there too long. I slept through at least half of each treatment.
I didn't have many side effects from the treatment, other than being rather tired by the end of the week. I had some seizures before treatment, and they got worse after the first day, but the second treatment dealt with that problem and I only had one more seizure a couple of days later. Since then, there have been no problems. I had some numbness on the right side of my face which I didn't really pay much attention to, but about two weeks ago it disappeared. The headaches have also gone away. What was really nice for me was having some immediate results. It encouraged me a great deal. I'm scheduled for follow-up MRI at the end of April to see how things are.
Wishing you all the best.
Raewyn
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Brain scan was clean yesterday! I'm officially remaining NED in the brain and from the neck down. March marks my 2 year anniversary of GammaKnife to treat my brain met. I'm just so thankful my treatments have been successful to this point.
Much love to all of you.
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Hi Lilon
So sorry for you, I recall it as the scary moments. Just remember to go easy on yourself. The fatigue usually peaks about a month after treatment. Also, don't worry if you don't see improvement it will take some time. Can you share more about your Chinese herbalist experience?
Hugs, Eian
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Goodie,
That is SO good to hear! Wonderful!
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Goodie, that is so amazing. You are exactly what I hope for.
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Goodie that's just gr8!
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fabulous Goodie
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Raewyn, thank you for sharing your cyberknife experience with me! It puts my mind as ease. For me, fear of the unknown is the worst part, so when I have an idea about what treatments and procedures entail, I do better!
Took the detailed MRI yesterday and saw dr today. He compared last months to this one and in the past month, 2 more tumors have resolved and the remaining 4 have continued to shrink. We are going to cyberknife those 4 and then hopefully, prayers being answered, I can be NED everywhere, not just neck down! Dr thinks the herceptin maybe breaching the brain blood barrier because the tumors have improved so much in this short time.
Goodie, so happy for you!
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hi, i have heard the term cyberknife and gammaknife used interchangeably yet the protocols seem very different. can anyone explain this difference to me?...when I looked it up they implied that gammaknife was a trademark name for the procedure it does(cyberknife surgery)...yet when i had my gammaknife my ro told me they could only hit each tumor once without doing alot of damage and because of the close tolerance of the beam (0.5mm) my skull was screwed into a halo each time...not that nice white mesh thing....nic nak, im wishing you all the best and i hope you breeze thru this with no or min se...
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Still feeling new and overwhelmed here. Learning and gaining hope from you all.
Quick recap, I've been bone only mbc since 2013. Last November my right temple and chin went numb. The tiny met causing it finally appeared in my 2nd MRI in February. I had just started Xeloda anyway. So, just finished 2 full weeks on X today. Will start 10 rads next Monday. White mask, beam across the temple. Met in the fluid.
The Xeloda and steroid (dex -which I hate) have helped the numbness and dizziness. Hoping the rads will finish that off. While I'm new to the details of brain mets, I understand fluid mets are tricky to watch in the future.
Anyway, up early today with nerves and hope. Good news/bad news: my lovely son and family (two youngest granddaughters) will be here at the end of my rads. I may be exhausted, but they will lift my spirits.
I appreciate the good news and hope on this board. It's been quite a ride, coming from the bone only world.
My best to you all.
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Kaption so glad you are holding here already. The wait is so hard. I think the rads will be great for you. Whenever D had rads, it was always better. It's just she has so much stuff going on, they obviously are cautious what/when they radiate.
Nan812 and Niknack Dani went throhg cyberknife I must tell you it was rough. The screwing was difficult, and it did hurt after also. She had it done twice close to the sphenoid area. It is very precise, and radiation goes only exactly where it should. BUT if you wanna be prepared it ain't pretty. Maybe something for the pain before and after, like a good dosage of advil or if they wanna give you something stronger. But it is good.
The other radiations she has had to the area was Gamma. Nan that's what I know.
I do ask for End of Treatments report, when she is done, so I see exactly what was done and the strength of GY (some measurement for rads) that was used, it came in handy just recently because she needed emeregency rads to the T1 and I had that handy, so they knew where they cannot go. They are extremely weary of radiating the same place twice.
best wishes guys,
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Hi,
Welcome to our new members. Don't lose hope, many of us are beating the odds here.
I have two scans to report on. My CT scan of my body (eyes to knees) looked normal. Still showed my uterine fibroid, a few tiny cystic lesions in my liver that haven't changed in a year, and tiny spots of lung enhancement from a recent nasty cold virus.
My brain MRI was last week and there were no new lesions. There was slight fuzziness of a few lesion that my two neuro-oncs believe is due to my recent break from Avastin (6 weeks). Im going to do three doses of the Avastin and then rescan, that will start in two weeks because there is a synergy between the topotecan and Avastin we are trying to capture.
I'm taking a chemo vacation from Kadcyla which I was gtting IV to prevent brain disease from going systemic again. It has been making my liver ache and I got numbness in the tips of my fingers a week after the last dose which after three weeks is finally dissipating. my team is so far okay with this break. Kadcyla is normally dosed at every three weeks but I've gotten it every four weeks since the end of November and still it was hard on my system.
I checked with my friend who helped to develop this protocol and he said that for a god 2+ years lesions from the LM continued to show up in his wife's brain and finally they realized that the weren't changing at all. He said about once a year docs freak out at her scan but so far it has never been anything.
It was a hard week for me nonetheless, this scan I found worrisome. I might look and function normally but with LM things can go downhill fast. Look for more results from me in about 7 weeks.
Ann
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Oh Agness/Ann, I'm sorry your scan has you worried. Keep us posted. I understand how quickly things can change with LM from everything I've read on not only this thread but others on BCO. I made it my mission to understand more about how I could progress myself. Fingers crossed for the next scan or at least stable without extra LM symptoms. Good luck.
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I am scheduled to have first brain rad tomorrow. I stopped Xeloda on Thursday. I woke up feeling awful- thought it was Xeloda fatigue and other se. By noon, with a 99 degree fever, chills, achiness, and earache I've decided I must have a cold/ viral thing. I'm hoping that if I can keep the fever down they will proceed. Calling the radiation nurse first thing in the morning to let her know. I'm SURE my MO does not want any delays.
I was actually relieved that it was something normal, and not Xeloda se.
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When I had a cold the 2nd week of rads, they proceeded with the treatment.
You are right to check with nurse though. I hope you can get it zapped on schedule. That Xeloda sounds tough from what I've seen on BCO.
Good luck. Keep us posted.
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Fever peaked at 100.3 last evening. But, broke overnight, so feeling better just tired.
Off to rads!
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Glad to hear the fever broke and that you can begin on schedule. Keep us posted.
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did it! Mask was snug- very snug- but doable with a Valium. One down. See the RO tomorrow. I have questions!
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CONGRATS!!!!! KAP
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congratulations Kapster!
You got a great team working for you!
Ageness / Anne congrats on your NED... I am just on IV TDM1 and had my first dose last week.
And Goodie, good for you!
Peace and hope,
JoJo
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Kaption, glad to hear you got through it. Thankfully, it should go quick. Keep us posted.
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The second treatment was ok.
The explanation of what the tumor looks like and it's likely location ( not positive) are scary. More than I can explain here right now. It's above the right eye and could be in the fluid. We're treating what can be seen. Then, have to keep a close eye on future developments.
Onward to the rest of the rads.
Thanks for the cheers and good wishes.
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Kaption what a relief that you are having this done. Good for you. Wish you the best.
Ann so sorry for the stupid scans...just hoping you could handle it.
DD is actually starting a new treatment, off Herceptin/Xeloda/Ixempra the whole thing, some kind of a trial, real new. Close your eyes and shoot, that's what this is. Last Pet/CT showed progression everywhere, even a new one in the lungs.She was off treatment for 2 weeks to get the toxicity out, and that in itself is very scary, but let's hope.
Everyone take care,
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NikNak,
Are you having Cyberknife on your brain? Right after WBR? Since your brain tumors are reacting so well to the WBR, why do they want you to do Cyberknife?
Hugs, Susan
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hi,
Dropping by to post this link, some BC brain trials are included I noticed.
-Ann
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