Brain Mets Sisters
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Chemo tomorrow and then off to the coast for 4 or 5 days with girlfriend. Birdfeeding, Toddlers and Tiaras, Hoarders. buried Alive and I hope I eat. This 0 appetite is ridiculous. Oh, and lots of rest!!! No internet so no contact other than land line. No cell service either. Quiet. It has been 2 months today since the WBR. When I get back, docors and scans ewwww. Not thinking about any of it till the dates. Hugs Jodi Did I mention I will watch any and all baseball?
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I think there are several ways they can use the lasers to treat the disease, and it has to do with the number and location of lesions, maybe what they've done before, etc.... I had the linear accelorator too...but for a couple of treatments, and they were all different! (although all WERE fast.)
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hi ladies havent been on in a age as i have have been in having me noddle microwaved...i have swollen to the size of a watermelon with the steriods and am covered in bruises...:( start chemo tomorra so not looking forward to that..also have moved home and getting sorted with that...hope you are all in good form and look forward to having a natter while il rest up pn the sofa...nunight..xx
luv tracy..x
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MRI results in the morning to see if WBR did it's job and Pet results to see if we are dealing with any other mets. To say I am nervous is an understatement. I have actually been feeling so much better since WBR ended and my spirits have been high. I am so worried tomorrow will change all that. Will let you all know the results tomorrow I am sure it is going to be a long night.
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Oh, Tracy, your poor noodle! I trust you will be Tracy again as many have had their noodles bounce back. We love ya and are thinking of ya!
Jax, think good thoughts, the bad ones don't do any good. Distract youself, take meds, get through it and let us know!
Thinking positive thoughts and sending love, either way, both ways, to Tracy and Jax,
Kathy
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Hi All,
Well, I promised to send results of my MRI and CAT scan that was done on 3rd May. I got my results on the 15th.
A mixed result. CAT scan completly clear so body ok. MRI showed some shrinkage of 5 brain tumours but 3 seemed to have progressed. I am going to ask the Gamma Knife surgeon for a second opinion as my usual onc does not do gamma knife and I just want to make sure it is not radiation necrosis or some other effect from the Gamma that my onc may not be aware of.
Bit gutted as I really hoped Gamma would keep them down for a while at least. My onc wants to start me on Navelebine and Herceptin. That may mean having to have a port put in (don't really fancy that).
Feeling a bit doomed to be honest. Can Gamma be repeated to the 3 lesions if it is progression??
Lassman
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Jax sending best wishes and prayers your way..hope your results have been ok, pls do let us know..xx
Tracey...hope your chemo does not give u trouble and u sail through the treatment quick and fast..big hugs coming your way..xx n hugs
Lassman..I am sorry to hear that some of the tumors are progressing..that really sucks..!! i do have a feeling what u r saying is right though, there is a possibility that this might be radiation necrosis..Please do look on the bright side lassman, your body scan was clear and teh other tumors as u said have shrunk..thats is really great news..! I am sure u will soldier on and come through this hard time soon..do keep us posted..thinking of u and sending loads of prayers your way..xx
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Lass-woman.
Absolutely follow up with neurosurgery or whomever performs gamma. They usually read their own Mri's and they know the brain, darling! My strenuous advice: make an appt and you may feel better having done that.
Love kathy0 -
if nothing else lassman, my port is my best friend. love it. Best of luck to you during these difficult days.
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Yes, that is a mixed result but mixed is better than bad, right? They will surely treat those new mets for you in an appropriate way and I'm hoping they will respond well. Scary stuff but you've been through it once - you can do this again.
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Well I guess I got the mixed result too. MO says brain is regressing but couldn't tell me how much says he doesn't have the original MRI (huh) but I see RO on Monday and she will be able to tell me. Pet showed uptake on chest lymph node and 2 masses in right lung. MO says next stop CT guided biopsy next week to confirm whether breast cancer or lung cancer and that will determine chemo. Have any of you had this if so can you tell me about it? On a good note liver and bones are clear. Really had thought there might be liver involvement as I have been having nausea since WBR ended. Have any of you?
Tracy sending you hugs
Lassman please don't feel doomed I have read of other sisters getting gamma multiple times talk to your neuro like K-Lo said I think you will feel better also.
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Jax, "mixed" is always a relief to me cause the chemo is working on some stuff.
My understanding is that radiation keeps working over time, how about y'all?
I eat a LOT of ginger candy for nausea.... and for pleasure. Good luck, honey.0 -
Bestfriend05 - Thanks for words of encouragement. I will keep soldering on. I really hope it is radiation necrosis.
K-Lo - have already made appointment with Gamma Knife surgeon. It's next Tuesday. Will let you all know how it goes.
Banjobanjo - at least it was a mixed result. You are right, at least not all bad.
Jax65 - Thinking of you. Hope everything works out.
One weird thing - last night I was e-mailing my sister with the latest news (she lives in Sydney, Australia). Was just about to send when I realised the words "you will be allright" had appeared at the bottom of the screen. A case of subliminal writing?? Showed hubby just in case I was "losing it" and not imagining the whole thing. A bit spooky.
Lassman
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it was probably the holy ghost. (seriously)
That was my favorite guy in all of Catholicism.. We used to say it really fast. The older ladies would say Holy Ghost in perfect tandem during the Rosary with their Missouri country accent. .. which I hear again in the small town of Baldwin where I play on Sundays.
And if we ever had the chance to say grace before meals without the parents it would be.. Father, Son and Holy Ghost, whoever eats the fastest gets the most.
No offense intended to my Catholic sisters.
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Apple: the megace has finally kicked in I even want coffee again can't wait for the side effect to get you
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Apple,
I am not very religious but would describe myself as a spiritual person. My dad was catholic and when he died i lit a candle for him in the church of the black madonna in France. During the night I was visited by what I can only describe as a "being of light". Can't explain what i saw to this day but it was certainly not an unpleasant experience.
Lassman
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Hi everyone.
What are some of the treatments for HER- brain mets?
My mom is triple negative and inflammatory. After seeing the medical oncologist he did not provide much hope for treatments. Saying that chemo will not pass the blood brain barrier. Its possible that her meninges have been affected. She has about 3 tumors. Waiting to get an MRI but there is a very long wait. We are in Canada. So far the only treatment offered is 5 days of (WBR) whole brain rads. I hope doctors will be able to find some other treatment. Is it normal to only get 5 sessions of rads ?
thanks.
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Hi worriednlost,
I have brain mets and am located in the UK. Mine are HER 2 Pos thought. If your mum is triple negative, looks like radiotherapy or surgury may be the only way to go, as chemo will not be effective. Gamma Knife is usually offered if you have 3 or fewer mets, otherwise you can go for WBR. If I had a choice I would go for gamma Knife first (if available) and it would mean you still had WBR to fall back on.
I had WBR first because I had 8 lesions and then Gamma Knife six months later (I also had 5 sessions. I think this is the norm now as a trial showed that 5 is just as effectice as 10). You lose all your hair with WBR but not with Gamma. Gamma avoids the usual yucky side-effects like red rash acress forehead and fatigue and horrible nausea (I did not have any nausea).
Hope you find some answers and this is helpful.
Lassman
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thanks for your response Lassman. I really want to throw everything but the kitchen sink at it to try to keep this beast at bay. My mom had another mild headache this morning that was on the same side as her tumor. I can't even describe the feelings i have inside it tears me apart and I can't imagine what she is feeling. She is an amazing person and mom. Do you gus have long waits in UK for treatments or scans ?
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well chemo started yesterday..and was in getting herceptin intoday feel bit sicky but ok....taste has gone already everything is ewwwwww....spose just gotta ride it out....will find something i can taste..probably the carpet...lol
hope everyone is well..xx
tracy,,xx
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What kind of chemo are they talking about? I thought so many chemos didn't work in the brain....
Apple, I love that grace...hahahaha!
And I felt like I had a nice religious experience early in my cancer journey too....I use it to try to stay sane...
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Worriednlost,
For scans we normally have to wait a few weeks (if having something done on the National health system). If you go private it can be days. Money talks it seems. Treatment is usually quite quick though.
Lassman
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Good morning Brainiacs. Personally I am doing well. The megace is treating me kindly once i swallow the 10 pills (twice daily). I did have a weird little eye thing going on last nite.. just a moment of shuddering. ick.. it probably was the Holy Ghost.
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Apple, that Holy Ghost is busy. Megace is helping nausea? You're eating better, I hope I hope....
wishing everyone better news and new outlooks on these mixed confusing brain lesions.
Me and my big mouth. Had simulation for eye rads. Ill be off chemo for more than 6 weeks..... now I'm scared of THAT! OY, be careful what you wish for. Gonna ask RO if she sincerely agrees that one has to be off chemo that long. But she is already defending the MO whom I have been challenging, so I think she will close ranks.
Jeepers, my peepers vs the rest of my body. What a choice.
Anyone hear of getting second opinion from Vanderbilt? That's closer to us-all down in the south......
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Oh Kathy, that's a horrible tussle between eyes and chemo - but well worth getting the eyes done, don't you think? I don't think chemo stops working the day you stop getting it so some kind of pause is probably not a problem but I can see that six weeks might worry you. Wishing you the very best results with the eye rads.
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Kathy what a difficult decision hopefully 6 weeks won't be to long and if your vision can be saved by rads that will have a huge impact on QOL. Wishing you the very best outcome.
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Hey guys.
I joined the club. I'm a bit stunned. Waiting to hear more this afternoon re: treatment options, how many, how deep etc.
Guess I'll be back to ask for advice later.
Lx
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Alesta?
Well.... I love you.. I am glad for the company and your heart shaped face.
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Ty Jax and Banjo.... well said, inspiration to me.
Alesta. Darling what can we do to help? Will you see a neurosurgeon? Can you ask to see one? I find their expertise to be advanced over the oncologists.
I will repeat, Ive had 9 lesions zapped and i don't seem to have any brain problems. My headaches come and go and vary in place. Any imbalance can be attributed to meds, i think.
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Hi all
Found this forum because Alesta mentioned it on a uk one, I felt a bit sad because on that forum there were only 2 other peeps with brain mets then they both disappeared :-((
Nice to see so many posts here (if you know what I mean!)
I'm back on steroids again , so may well be up and about for most of the night (managed to do without for 9 months but I've got a bit of swelling in the biggest met in the cerebellum so I tend to fall over and/or throw up without them - not my best look!!)
I had gamma knife in may of last year and up until a few weeks ago the brain mets had been behaving themselves. I'm hoping that the present problem is to do with necrosis (sp?) rather than new growth. I am due to have a pet scan in the next few weeks to see what's going on.
I didn't realize but I'm told that they don't usually do gamma knife on multiple brain mets - I had 24 treated in 2 very long sessions (6 hours then 4 hours) 2 weeks apart. Most of the mets were very small, less than 1cm, but I did have 1(in the cerebellum) that was 3.5cm and another, towards the top of the brain, that was 2cm.
Has anyone else had treatment gamma knife on so many mets ? One person told me that her onchologist had said that it was 'irresponsible' of a gamma knife team to attempt to treat so many - feeling a bit worried now, what with the swelling and all
Cheers
Melissa0
