Brain Mets Sisters
Comments
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Sorry for your distress April. I don't know enough about this to comment. I have heard of people living with brain Mets for a long time.
Many of us feel strongly about going to an NCI Accredited cancer center.
If you can just talk and.listen to her.by phone til.you can get there, I think it will be comforting to let her.ventilate. best wishes.keep us.posted.0 -
Hi Bestfriend,
Not sure why the drugs did not work. Can't believe I am immune after just 6 months of taking them? This is one sneaky disease though so i suppose anything can happen.
I don't take any AI's and no-one has even mentioned them. Do you have ot be ER/PR pos for these drugs? I am only weakly ER pos and PR neg. I was on Herceptin to start with but after the brain mets were diagnosed they stopped it and replaced it with Tykerb/Xeloda combo. I think the Herceptin kept it out of the rest of my body.
I shall ask about gamma knife on my next appointment. Thanks for your words of encouragement bestfriend.
Hope all is ok with you.
Lassman
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Hi lassman yes as far as i know u need er positive for AI to work, but as u said u have only weak er positive is probably the reason why they have not used it. I am ok, I am here on my behalf of my mom who has recently undergone WBR and just finished about 2 weeks back, she is ok going through all the side effcts as is expected but having a lot of muscle stiffness problems. well, lassman i hope everything turns out ok for u and your onc comes up with a very good regimen for u, and if he doesnt u pull his ears and tell him to sort himself out..!! u hang in there girl and i am sure things will work out ok..i have a feeling gamma knife might be the way to kill it out and as they say things can only and will get better..!! keep faith ((hugs)) maybe u can ask for a retest of your ER sensitivity cuz if i am not wrong sometimes these things can change, not 100% sure.
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Bestfriend,
WBR side-effects - how i hated them. Felt like my brain had been frazzled, which i suppose it had been. My poor scalp was so sore and sensitive, then itchy as my hair fell out. Hated the fuzzy feeling it gave my head as well. The SE's do go away eventually so tell your mum to hang in there.
Hope to kick some ass next time i see my onc...
Lassman
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Just checking in to say "hi".....lassman- I was sadden about your progression. Will keep you in my thoughts. April--Sorry about your friend. Is it too late for a clinical trial. I wish I could be of my help. Sending gentle hugs to all.
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Congratulations pq2! Thanks for sharing your good news!
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Please talk me why I must not drink. I've been craving beer and wine. Mets to brain. Doesn't sound too smart. Please scare me out of this behavior!
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Well Kathy, alcohol kills brain cells. Radiation kills more brain cell. Tumors eat up brain cells (I would guess). So if you want any brain cells left I think you shouldn't drink. But what does your doc say9v
PQ great news!
Lassman - hope your docs can get a new treatment plan that works for you soon.0 -
She would say " you can have a few drinks". And I would say, "I can't have a FEW drinks" ill get neurosurgery to add to your logic, Ree. Ty
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Ok, I need some inspiration. I've just completed 9 out of 14 WBR treatments and I've been so tired and in bed the past few days. I am also on steroids which is causing me major depression. I just feel like theres no hope at this point. I just cancelled a spring break vacation because I just don't want to waste any money. I'm still working full time (from home) and feel guilty that I may have to go on disability. Financially it would be difficult to quit completely. I'm just at a loss over thiw whole brain mets and getting radiation. I just can't seem to get out of this and enjoy my husband and kids.
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K-Lo I was allowed to drink all the way through radiation and brain chemo -- the one who took me off alcohol was the liver doc who has installed a bile duct shunt and being one of those gastro guys I'm now on this low residue diet and metamucil and all the other stuff they go overboard on. But the WBR and a drink shoul dbe JUST FINE. Jane 1967 -- what can I tell you. WBR is the most exhausting thing and the lack of energy really gets you down. I finished almost three months ago and it's just starting to return and that's after battling other complications. But it DOES return. Frankly, my rads doc was pretty open about the meds -- said the Vicodin and Ativan lift mood and help energy and the last thing to worry about is gettin hooked.
Hey all thanks for the congrats -- have to say I'm trying hard not to celebrate too much. Just don't want to get head of myself if you get my drift.
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hi everyone, i was diagnosed of brain mets last Jan 2. I had a seizure twice last dec 29 and 30 and they told me that i have bran mets, ood thing abouot it is that it is just starting. Anyone who has the same case? I am currently for radiation 10 sessions and 2 weeks xeloda.
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hi everyone, i am seeing a lot of abbreviation in the thread like bbb, se etc. Is there any page on this website where i can find the meaning for these abbreviations? THANKS!
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Bbb - blood brain barrier, keeps most drugs and chemo's from crossing.
SE - side effects.0 -
Sunshine32 I can't postt links on my phone but there is an Abbreviations for Newbies thread in the waiting for test results forum (under not diagnosed but concerned). I bumped it for you (posted to move it up in the active topics).
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PQ2: I'm so glad someone finally mentioned SEs with your ears. I just finished 15 WBR sessions, and had my ears clog up on Friday. It is really frustrating. The doc had me come in right away but said he thinks it's not from the radiation but from sinusitis that was just seen on a head CT. I'm not sure I trust his opinion on that. Will this go away on its own? Also, my other SE's were hair loss, red/burned scalp with skin breakout..my wig even hurts being on...much different than when I lost my hair during chemo. Also, I have fatigue, serious teeth sensitity to cold, sporadic muscle spasms (mostly in the legs, but sometimes in my rib cage) and some visual changes with focus like I need my eyes checked again. Sounds like a lot, but I'm actually doing pretty well otherwise. Does anyone know if these SE's will go away?
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Mommmydoxie...The ears issue is horrid, simply horrid. Decongestants help, and I had my GP do a flush because part of the problem is this waxy over-build-up of junk inside. So the WBR can cause the congestion for sure! Yup, sensitivity to cold, sore head (haven't worn my wig in months, just scarves and hats). So when does it go away? Get aggressive on the ears cause it will help you feel better, less underwater. Sleep as much as you can. I still don't have hair and I ended end of October but they say maybe this month or next. I'm waiting on eye check -- still going through chemo. Anyway thr symptoms really only start going away, I'm sorry to say, about a month after I stopped WBR.
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I'm so glad to hear about the teeth sensitivity! My RO said it wasn't from radiation! But, boy - nothing tastes good. I'm barely eating anything. I'm hoping I can loose some of the steroid weight this way!! So, about a month to regain taste and drink cold things?
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Survivor2Be,
Don't know how long for taste to return - I've hardly been able to eat for eight weeks now and no sign of improvement. Am eating very limited diet of things I can actually swallow (as opposed to chew and be unable to swallow). The smell of hot food, or cooking, makes me heave and I can't make home-made soup any more because I can't taste it. I still think this is from the radiation but as I'm having chemo now, it is hard to be sure.
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Andrea, the radiographer also told me that radiotherapy to the head doesn't cause a dry mouth, however when I mentioned having a very dry mouth to my dentist he said that WBR can affect saliva production temporarily, and gave me a saliva spray, he also said reduced saliva can affect tooth sensitivity! Mine were a problem to begin with, but are Ok now, I finished WBR 6th December.
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Dry mouth from WBR -- yup! Goes away within a week or so from treatment end. Sensitivity to cold -- yup! Starts to abate within a month or so. Taste -- I'm about 2.5 months from end of WBR -- just coming back. Everything seemed too salty or too sweet but that's going away. The steroid weight does melt off kind of all of a sudden -- I went down 20 poounds in two months but I was eating half of normal diet and had complications. All of which is to say the SEs do abate, it just takes time. And patience. DON"T YOU HATE THE PATIENCE PART???
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Hi all,
I'm new to Stage IV since Nov. when I had a brain seizure. They've since succesfully removed a small brain tumor and tomorrow they're going to nuke it with one shot. My hair has thinned considerably since chemo 3.5 years ago. Does anyone have any idea whether I will lose all/some./more hair from just one stereotactic radiation dose to brain?
Thanks!
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I do hate patience! I've been having patience for 15 months to come to an end of this ordeal!!! Damn BC!!
Jintski: what was the name of that saliva spray and where can I get it? If I have a month to recover from this, it'd be nice to have!!!
Thanks for the reports! Tomorrow is my last treatment of 18! So happy!!!0 -
Banjobanjo: I'm sorry that it's been such a difficult recovery for you. It is just not fair after going through so much! Are u not able to eat because you are nauseous or because it doesn't taste right?
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Survivor2Be,
It is a mixture of taste problems (you are right, the salt or sweet content of food seems to have been multiplied by ten, so that at first cheese tasted like anchovies) and nausea but the nausea was only a response to not wanting to swallow the food. If I could have lived on food tablets (remember the movie 'Soylent Green'?) I would have been very happy and not nauseous at all. In particular, any bread product was impossible. I could eat steak at first but only for a few days and then meat became a problem. Things have improved but my diet is pretty fixed - I can eat cheese and cucumber or tuna and mayo sandwiches (yes, bread can now be managed) but they have to be cut into fingers - psychological help! I can now eat toasted cheese and, strangely, pistachios every few days. With the odd clementine thrown in, this is what is getting me through but I am in a weird psychological state where I am scared of every approaching meal because I know I must eat if I don't want to go under and end up in hospital. Such determination, although I am not at my worst anymore and so am hoping this is the gradual improvement which is leading me out of this.
Your words of experience have given me hope when I was really down. Thank you,
Barbara
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2z54, I'm having a single zap. They told me I'd lose a spot of hair. Not too shabby.
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Biotene is the mouth spray.
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Hi,
Joining the club...multiple (at least 8 lesions)aome as big as 3-4cm. Have lost coordination on left side.
Don't know the treatment plan yet.
Am 18 months into a 24 month expiry date.
B
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Hi Bruburn,
Hoping that whatever treatment they give you will extend your 'expiry date' - you are not a carton of milk, by the way!
Have had WBR but not had any scans to see results yet.
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Hi Bruburn
I'm so sorry to hear about the mets but hopefully you will respond to whatever treatment you get. Seems like there's been quite a few positive brain mets stories going around so please hang on in there.
Hugs
Laurie x
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