Brain Mets Sisters
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Hi Nancy - I had a craniotomy on May 2nd. My tumor was sitting on the movement nerves in the left parietal region. Surgery was not bad at all. I I'd not experience any pain post op and never had to take even Tylenol! I hope you re in good hands and it goes well for you too...wishing you a speedy recovery
Cathy0 -
Ladies, hope you're all well. Nancy, I've had two craniotomies in the last six months and while everybody is different, my recovery for both was cake. They cut into my jaw too on this last one. Ask for ICE not heat. Headaches should subside in a few days. I wish you lots of luck & gentle recovery.
My actual post is on my wbr experience. I promised I would post every day but my experience has been pretty unremarkable thus far. Just finished 12 of 14. No side effects to speak of yet except my hair HURTS! I guess this is the follicles hanging on for dear life before they finally just let go. Yikes. Balance is off ever so slightly but I've been rehabbing a motor strip injury since my surgery in May so that's more nuisance than side effect. Slight nausea right after tx but that's more psychosomatic from THINKING about what they're doing to my brain. No real fatigue unless im not doing anything. I guess the next 4-6 weeks will be the real test. I will do my best to keep you updated! God bless my friends. I pray for you all daily.
Btw, my wedding was awesome but I am SO glad it's over!!!
Love & prayers,
Nicole0 -
Congratulations on your wedding Nichole.
I start radiation today. It will be for five days and will include 4 new tumors and a previously radiated tumor that keeps growing. Am nervous when I think about it but try not to dwell on it. This is my second time with radiation to brain. I hope this will buy me some time as I am self paying for it:) as ins refused to pay.0 -
FMG, my second go around with radiation too. SRS in November not the wbr. What are you doing? SRS or something else. I cannot believe insurance won't cover. Like you're not already going through enough! Prayers are with you!
Nicole0 -
Nicole,
Thankyou. I am doing SRS again. That is why ins refused to pay. They wanted me to do WBR this time but rad onc wants to keep WBR in back pocket for next time and he said there will be a next time.0 -
Yeah I wish SRS the second time would have been an option for me. I went to 4 second opinions and they all said no. Hoping my experience with wbr will be a positive one & I can help dispel some of the negativity associated with it. Best of luck & stay in touch. Xo
Nicole0 -
Has anyone taken chemo or targeted medicines during SRS radiosurgery. I am on SRS for five days for five lesions. I started yesterday and will continue till next Wednesday. I am currently on Xeloda, Afinitor, tykerb, Herceptin and zometa for cancer in lungs, liver and bones which is active. My MO and RO both said there is not enough data for chemo or targeted theraphy during extended SRS radiosurgery and I was in new territory. They do withhold all treatment during WBR. They have said it was my choice as there was insufficient data. I do not like making this decision but will probably continue. If any one has experience with this or advise, I would really appreciate it.
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Nicole, congrats on your marriage! I'm so happy for you. xo
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I'm just getting caught up on everyone. Takes some time, as my vision is still gone. Doctors are saying that I probably will NOT get it back....ever! argh
I worry about all my other senses now. I get scared that my hearing will be next, and so on.......
How do we get through this crap!? the worry......argh
sorry, just depressed really.
I hope you all are doing well and I am thinking of all of my brain mets sisters...Jill xo
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Thanks jilly, prayers are with you & the return of your senses. Hoping things begin to look up.
FMG, I read somewhere that remaining on chemo during SRS can POSSIBLY increase complications for tumor necrosis. I dont know where I read it but it does stand out. Sorry if this muddies the waters but best of luck to you too. One wbr left for me & I am DONE. It's so damn hot here. Ready to say EFF this!0 -
Nancyh-just wondering how you're doing? Thinking of you with ((hugs))
I am here in limbo waiting to see if Xeloda/BKM120 is working. Feel like I'm not getting worse but not so really better either-anxious for next scan. Have a great week
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Wbr update. They said hair would start coming out after day 10. They were not joking. I finished 13 of 14 yesterday (yay! One more) and the hair is almost completely gone. Clumps, handfuls, you name it, second time I've lost it. Still have a thin covering but it's on it's way out for sure. Not as traumatizing this time around. Stay tuned for what happens next!
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Hello all! I'm wondering if there's anyone on Tykerb and herceptin? I just started herceptin for the second time this past week and will add the Tykerb sometime soon. I've done a lot of research so I feel like I know what side effects to expect but I'd like to hear from someone who's actually taking it. How bad is the diarrhea, has anyone lost hair on it? This whole brain mets thing is very new to me.
I'm going for X-rays this week because I've been having lots of pain in my ribs...makes me nervous. I'm having a lot of emotional ups and downs, which I didn't have so much of the first time around. Anyone have any advise on how to deal with the down times?
Thanks ladies, it means the world for me to have somewhere to ask these questions!
Kathleen
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Hi Kathleen-sorry to hear about your latest. I started herceptin/tykerb in August and did ok for a few months. Had some diahrrea but not bad and other than that really nothing else. Ended up switching in December after some improvement but then some progression. This all sucks...right now I'm doing BKM120/Xeloda/herceptin. Waiting to see...Hugs to you!
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Hello everyone. I was just diagnosed with brain mets last week and started WBR on Thursday. I'm scheduled for 14 tx's and then starting Halaven immediately after. I just got kicked off a clinical trial after the brain mets discovery and had multiple scans on Friday, preliminary reading shows that my liver tumor is bigger after initial scans showed 11% reduction in disease. I am still trying to process everything, my doctor hasn't given me a prognosis because I am not ready but everything I am reading says months after brain mets dx. I have a 21 month old son and have only been battling this since January, I am nervous about losing myself in all of this and I'm having a hard time maintaining hope at this point. I thought I would have more time, I was not ready for this after just 7 months and I feel like giving up. Is there no hope with WBR and brain mets? I just don't know what to do or who to talk to, my family is here but they don't know what to say. Prayers for all of us, thanks for listening.
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Hey sugarmagzz, sending you hugs and hope someone will be along soon to give you info and hope!!
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sugarmagzz-
I did not have WBR but did have gamma knife for two lesions in December. It was very successful. I hope the same for you. There are many people on this board that have done very well after treatment. I also had liver mets and my meds have knocked them out for now.
I have 4 kids the oldest is just turning 11 and youngest will be 3 next month. I have never looked at statistics as we all know what they say. I chose to live day to day and enjoy every moment. I hope that you will have successful results and can enjoy that little one of yours for many more years. itis hard but I belive you can do it. This board is very supportive and helpful.
May you have good results and be able to enjoy your days with family.
Hugs
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question.....
did any of you experience hearing loss after Gamma Knife? If so, how long after the treatment and did it come back at all?
Jill
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Sugarmagzz-So sorry for latest developments. I also have a 2 yr old and it's overwhelming I know. I've had a roller coaster since my recurrence was found July 2012, just had brain dx in May but there are so many people on here who have been on this train for a while. Radiation is my next step if necessary-I was told I had too many mets for Gamma Knife. Just know you're not alone and that there is another combination out there that's right. Prayers and hugs to all!!
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Sugarmagzz, I was diagnosed with Stage IV in 2011 with lung mets. Just recently July 10 was diagnosed with Brain mets. I was so surprised because the treatment I was on for the lungs mets seem to be working and then all of suddent I had a reaction and couldn't do it anymore. My Dr. was concerned and did brain MRI only to find that I had Brain mets. Who knew. I had no symptoms to speak of. So after I was able to get my head wrappped around all that I and gained some kind of peace of mind I am doing a little better. I had my first radiation treatment yesterday WBR plus I have a tumor on my side that has popped up where they did the lung met biopsy that I am also having radiation on at the same time. I have been told by both my oncologist and the rad oncologist that this is not a waste of time. Although it is not likely to cure me it can give me more time. I will take all the time I can get as long as I still no my name. The only difference in us who have been diagnosed with this nasty disease and others is we know our time is limited and we are pretty sure we know what we will die from. So we aren't living in a dream world of having all the time in the world. I have known a few people in the past couple of years who seemed perfectly healthy with children the same age as mine, and died suddenly without any warning. I was so shocked my self and wondered what she would have done differently had she known, like me. she didn't have that luxury, she had no clue. I stay in today as best I can and try to make the best of today. This is no easy lifestyle that's for sure but since we can't really change the scenario we can do our best to adjust our attitude. Much easier said than done. I hope you find some peace. Love and hugs!!!!
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Chris62.....well said. It's always nice to read things like what you have wrote to bring me back to what I should be doing and how I should be thinking. I get off of and on the coaster, and I have to stay on a straight path. xo Jill
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Hi everyone....I haven't posted on this thread before, but I have a question!!
I have triple neg mets, multiple bone & 3 liver lesions. Lately I have been getting headaches although not debilitating. I wake with a headache & it comes & goes all through the day as well as being in a different place each time....I.e. top of head, back of head etc. I do have skull mets but as far as it know they are at the lower back of my skull. I have read that most have found out about brain mets with no symptoms but would be interested to hear any opinions re my complaint. I am seeing my onc on Thursday & will of course mention it, but the impatient part of me wants some opinions...
Thanks for listening.
Karen xxx0 -
I had no apparent symptoms with my brain mets. My oncologist and I had chalked up my short term memory loss and inability to multitask to lack of sleep ( I have 4 children under the age of 11). In retrospect, after my gamma knife treatment for my brain lesions, my ablitly to make lists, plan things in advance, and to remember stuff was much better. I never had head aches. Talk to your oncologist about your fears. Make a plan that you are happy with. I always side with be on the safe side, but sometimes people don't want to have another scan.
I hope that these are just head aches brough on by normal living and that you get relief from them soon.
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I also did not have any symptoms to speak of. No headaches, to memory loss. Was basically functioning normal. Fatigue from chemo, but that's about it. I started having unexplained naseau and Onc wanted to do MRI of the brain. And there ya have it. Brain mets. Who would have thought. I wouldn't take any pain anywhere for granted. With this disease it may or may not be trying to rear its head. I believe the sooner ya catch it the better the treatment response might be. I'm undergoing WBR now. I have had 4 and I still know my name, and where I live. I wish you the best results possible and lots of suport.
Hugs,
Crhis62
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Thanks girls.....I have bone & CT scan this week & see the onc on Thursday.
I've also has nausea, but only at night when I go to bed! I am on Xeloda although this is my week off. I will talk to my onc & see if he thinks I should have a brain scan....sigh!!
I would rather know, hate not knowing what's going on in there!
((Hugs)))
Karen xx0 -
I have to share my good news-hopefully a ray of hope...had scan and brain MRI on this week that showed shrinkage and some necrosis in my brain mets. I started BKM120/Xeloda/Herceptin trial second week of June so its almost 8 weeks. My oncologist is happy and so am I! Don't know if others have had rash & neuropathy problems with Xeloda but I'm not gonna complain too much about that...fingers crossed for continued success!
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yay for good news. i didn't have any neuropathy with xeloda. I started getting it on Taxol. It's not much fun. I hope you have success for a long time to come.
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I had a rash from Xeloda the first few cycles but not since. I do have a presisitant break out on my face which is probably from the Xeloda, but I will take it.
Yay Hendircks1
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Sugarmagzz-
My mom has been battling this disease since 1998. Last year, May 2012 we were told that the cancer was in her menges...I am not sure on the spelling that. And that at best she would have about 1 - 3 months. It has been over 1 year since she had her WBR. She has been on xeloda for 1 year since her radiation. I was devastated by the news we recieved last year....AND I thank god every day that those doctors were wrong about my mom's out come. It has been a roller coaster ride but some how my mom manages to stay positive even on the worst days. Even though I was so angry those doctors gave us that awfully prognosis...IT is a constance reminder every time my mom gets another bump in the road that she has been there before and she managed to fight threw it.... My mom looks and feels much better today than she did a year ago....She still has to have constant monitoring of her brain but so far she is doing really well. She is having to switch chemo again.....they are think this time maybe eribulin.
TIP for anyone on Xeloda. My mom been on the drug for 1 + years....her feet were constantly burning and terrible pain. Her toe got infected so I made her go to a foot doctor....he told her to wrap her lather them up with lotion and wrap them in plastic at night......IT WORKs my mom's feet look and feel like new. I could not believe my eye..... I told her she needs to quit trying to be so tough and go sooner next time.
You are all amazing....and I hope my mom's story brings you all HOPE!!! I will let you know how her next chemo goes.
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Thank you all for sharing your stories and for your words of encouragement. I am a little more than halfway through my WBR and am anxious to have it completed. I am doing a little better now after having some time to process the new diagnosis. I really appreciate the support here, I don't know where else to turn. Hoping and praying for us all.
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