Brain Mets Sisters
Comments
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Julie 26- I had the gem/ carbo combination for about 6 months and it got rid of my lung mets. I didn't really have any side effects except the carbo made me s little sick
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kita
Good luck with the ct results.
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CT came back clear, phew. Thank you ladies for your support I am encouraged by your strength.
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FMG. Hope the MRI really shows that the brain mets have flown the coop and that it's something else causing your headaches and they can get rid of them, too. We're here for you, no matter what.
Paula
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kita,
Great news!
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Fmg, I echo Paula, headaches really can scare us, yet we have so many other reasons to have them! Holding you hand, hoping the test liberates your family's summer.
WTG, Kita!
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Dear formygirls,
I will be sending you peace of mind, patience for waiting, and love for whatever the outcome. It is better to know sooner if something is there and you know that. We don't want to ruin anybody's summer and this will not be a deal breaker, no matter what. I have been living in that abyss for some time now and there are times I feel giving in would be easier. You just need a break and some good news would help immensely.
Lots of love,
Terry0 -
Great news Kita!
Fmg hoping it's all good. Thinking about you lx0 -
Hey guys, my DH and I often used to joke that if I lose my appetite, we will call the undertaker. (This is not about brain mets but I feel at home here now...)
Well, now I'm losing weight. This is something Ive worked hard on since I was 13 (paging Dr Freud). Up and down.
When you have a weight issue, people always complement you when you get your overweight down, then say nothing when you gain it back. Anyone say amen?
Now, I'm still at the top of my optimum weight range, but to people who've known the larger Kathy, the question is silent: is she getting sicker?
I'm pretty sure the reason for this loss is radiation through the abdomen to the L-spine. I think it shrunk my stomach. I can still get plenty of calories in, but more slowly, so cannot OVER-eat as easily. So its like a radiation Lap-band procedure.
Well, its long way to go before I'm "thin", but it is a strange milestone,
Thx for listening.
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Terry,
Same thing happened to me. Insurance only approves 4 but my doctor fought for all 7. He won and it was covered!
Hope the same happens to you. Just let your doctors help you. They would be more than helpful.
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Prayers going up! Blessings coming down!
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I started out with 1 1cm tumor in middle had cyber within a week on that one then at 3 month mri found 3 more all under 1 cm again had cyber on them this time 5 treatment since one was close to the brain it had 3 smaller treatment my team is great will talk to me till i understand. i go in next week for 3month follow up on last cyber.getting nervous trying to stay positive my tumor markers are way down and i'm on x which is suppose to be best for passing bb thanks for all your words of wisdom it helps the anxiety
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braids... welcome and great luck
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Rohm - Thank you for your reply....please let me know how your treatment is going. I am praying for you. My mom has not started her treatment yet. I am from Alaska and I have 3 young babies (3.5yrs, 1.5yrs, and a 2 month old). I have been trying to travel to see my mom as often as possible. In May I was there 3 weeks after I had my baby....my mom wanted nothing more that to see my kids....It was the best time ever to see my mom with all my kids. I am leaving again next week to see her again. As she is not able to fly until we know more about her treatment and how well she will tolerate it.
Love reading all of the lovely ladies thoughts on this board. I just recently had a friend diagnosed @ 27 with breast cancer in one breast she has only been on treatment for a few months and apparently it has now progressed in her other breast. I told her she needs to read about all you amazing women on this site. You are are so strong it is amazing.
I think about you all everyday.
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Tiger Blood,
Thanks for sharing this. It certainly is an exercise in patience.
All the best,
Terry0 -
Hey..
I had Gemzar...no cisplatin, but I was taking Tykerb & Herceptin too. It hasn't failed, but I still get a break now and can re-add it if I need to. The Gemzar erased my one liver met immediately! With Xeloda I didn't have as good luck!
Everything is good with me except for having to take the 'roids for hopefully only a couple of months. This weekend I'll end up back where I was before I had problems...I don't think the nurse OR I are in a big hurry after that..much as I hate the 'roids.
I had a craniotomy...actually two. I wouldn't recommend them, but I don't like any surgery. I will say there isn't a lot of pain or anything...the first one especially, other than being careful I recovered from completely pretty quickly! Hope no one needs one, but know that they are doable!
And I love pedicures...almost required in Atlanta and because I can't shake a toe infection which will let me this year! And yes, I think the little things are the most bothersome of all!
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Nutso,
I am in the hospital. Woke up last Sunday and just could not stop vomiting. So of to hospital to be placed on a drip and a shunt put in. I do feel a bit better now and my appetite has actually come back. Having 12 SRS blasts to try and send the cerebebellum mets into remission and then perhaps some more gamma knife.
My Balance is gone so will have to learn to walk properly again. Must be patient.
See where this all goes.
Lassman
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Hope 4 best mom,
I sincerely hope you get a better understanding of what your mom needs. I really believe you do need the support of the other caregivers on that thread. Only they can understand what its like for you; balancing your children's needs with caring for mom. Truly, you have to take care of you if you are going to be living with this.
Thats why we want to relate to EACH OTHER, the other women who are experiencing what we live with everyday. I cant imagine what your struggle must be like. Very tough.
Best wishes,
Kathy
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(((((((((LASSMAN)))))))))
Hope you're up and at 'em in no time and the food is acceptable (ah the joys of NHS kitchen or maybe you're somewhere where they don't have powdered tea!)
Laurie x
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Lass man,
Hope you are getting better and can come home soon. Lots of hugs. Hope the rads do their magic fast and everything reruns to normal.0 -
Lassman,
How are you sleeping? I hope you have some joys every day, some funny movie or pretty flowers. Its a balance between fighting for more time and not being tortured. At least the hospital environment sounds safe.
Hugs
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Lassman, am so sorry you're stuck in the hospital again. I hope you are able to get to walking well again. I just got back walking not far and not fast on my treadmill again and so long as I have those supports there, I do feel better mentally and physically. Sending big hugs... Paula
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Hi lassman
My brain mets are also mostly located on the cerebellum (the other one are scattered all over but are generally small)
I can relate to the vomiting and loss of balence. I find the vomiting especially weird as there is almost no warning - can be a tad embarrassing :-(
Balence is a problem but also fine motor control (threading needle is impossible)
I am booked for gamma knife next Tuesday and the doc is confident that things will improve for a couple of months, his concern is that from 3-6 months there might be problem with swelling as the site heals. It may be that I will need a craniotomy and shunt at that point. I am sorry that this is happening to you, I really hope that the radiotherapy zaps the buggers and you (and me!!) get lots of vomiting free, well balenced time ahead of us :-)
Good luck, I will be thinking of you. Please do try to post to let us know how you are getting on
Love
Melissa0 -
Hi all,
I am in the Bupa Cromwell in London. Mega bucks but sure beats the NHS food and single room beats the ward. No vomiting for a while either. A good sign I think. I hope the radiatiion zaps the cerebellum boogers. 4 more zappings to go.
Lassman
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Tillycat,
I can so relate to the embarrassing vomiting. Talk about sneak up on you
It seems to be going with the radiation. Was warned tumour may get bigger to start with so watch out for that. Balance is also improved.
I'll keep you informed Melissa.
Lassman
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Hey everyone! Lassman, sorry you ended up in the hospital but it sounds like after that things proceded as planned! I had some effects show up from radiation about six months later...which they say they sometimes see about six months out! Their treatment is steroids. I didn't love it, still don't, but had the chance to see what too few did and that was not pretty so take them I will! Hopefully it will only be for a few months...keeping things crossed here...but that IS what they said!
PJB...any improvement, even slow, in getting your strength more normal is a victory!
And my troublesome met is all about the cerebellum too...other than the brain stuff I'm doing good...just got another round of PET scans that backed that up!
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To Lassman, sorry to hear you are in it the Hospital, looks like you are getting better, hope you can go home soon, no better place than your own bed. keep zapping those buggers,so they never come back.
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Got my brain MRI results. Bad scan as there are three new tumors. I do not have a plan from the doctor yet. I do not know if they will do WBR or SRS. When it rains, it pours. I had progression everywhere else--why not the brain.They do not think this is related to my headaches. I wonder if I will ever get a break of stability before the end comes. It was hard telling the family again--another test failed.
Lass man,
I hope you are feeling better.0 -
Formbygirls, this sucks. About time you had some good news.
Any chance of more SRS?
Sending thoughts your way.
Lassman xxx
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FMG
So sorry to hear about the scan. Hope you can get some more SRS.
(((((HUGS)))))
Laurie x
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