Brain Mets Sisters
Comments
-
Sbidalia -
You can file a continuity of care application with Blue Shield. Get the application from the BCBS website. I'm a UCLA patient as well and had to do this to be able to finish up my plastic surgery procedures following phase I of my DIEP reconstruction. It's not a permanent solution but it should get your daughter through the next few months while other arrangements are found.
0 -
Sister had brain mets with stage IV diagnosis 2 years ago. Had WBR and no problems with them since.
0 -
Awesome, Marti.
0 -
That's great news Marti!
0 -
Thank u Marti for sharing that with us..wishing your sister many many more years filled with good health and joy..!!
0 -
Blue Shield/ Blue Cross cancellation
Thanks to those who answered my post regarding the BC/BS cancellation of ties with UCLA, thus cancelling my daughter's ongoing treatments thru the Ommaya port. We have now filed a continuation of care application with them. They have at least approved this weeks treatment and this gives us a little breathing space to get referrals from her present oncologist and look into other hospitals like Cedars. It is so encouraging that jenn333 is being allowed to continue her UCLA care.
to rolepaul: We were astounded to read your report on the actual cost of the herceptin vs. the cost they would charge us! Thank you for your support and we wish you the very best for your loved one while they go thru the same treatment.
0 -
Beating the Nausea
My daughter had unsolvable nausea after her WBR, so bad that she ended up in the hospital for 3 weeks from dehydration and fatigue. They tried everything and the doctors were at a loss. Finally one of the nurses told her to try Megace which she was told was an appetite stimulant. The doc approved it and it was like a miracle. She rarely has nausea now and her fatigue is much less. The only problem is that a side effect is blood clots and since she got a DVT while so immobilized, she is trying to cut way back on its use. Some new studies I read also indicated a possibility that it mayhave anti-cancer properties of HER2+ patients. I hope this can help you
0 -
Jane1967,
I'm off the steroids but the taste/not wanting to eat can go on - mine has lasted a good eight weeks now - have a few things I can get down but cannot manage hot food at all. Good luck with yours and glad your treatment is finished.
0 -
Hi all,
Got results of my body scan yesterday. The good news is that the cancer has not spread anywhere else. My body remains cancer free -yeh!
Still leaves the problem of the progressing brain mets though. I had WBR which held them at bay for 6 months, but now they are re-growing. I have asked them to consider Gamma knife since I think this will give me the best chance of survival and buy me more time. I have 5 mets so they are reluctant to do it even though the mets are not near any structures such as arteries or optic nerve/brain stem. But i am insisting they proceed and they have agreed to a consulatation at least.
If I get the Gamma knife they will wait until this is finished and then start me with navelbine/Herceptin combo. I was told this has a poor response rate for brain mets though. Has anyone elso hear this? Anyone elso had this combo for brain mets??
Lassman
consultation
0 -
Lassman -- Can they throw in Tykerb in the mix along with the herceptin and navelbine? Recent research shows that that may be a more effective combination. (I think Fitztwins made a post on it)
0 -
Hi MCTHO,
Onc said they will not give tykerb again once it has stopped working so will only offer herceptin and navelbine. Looks like that decision is down to cost as well.
Lassman
0 -
lassman -- Maybe it's time for a second opinion!
0 -
So I'm just here to vent!! I don't know if I can continue these steriods!! I'm an emotionally reck!! I do nothing but lay in bed all day and either try and sleep or cry. I'm frustrated as I have no fine motor skills on my right hand and arm and can't do much. I'm suppose to be on Decadron for 2 months and taking 6mg a day. then a repeat MRI to see if it reduces the swelling. Any suggestioned on how to cope with all this would be greatly appreaciated. Thanks for listening.
Jill
0 -
Hi everyone,
update on my mom- Dr agreed for her to start on Xeloda after being told theres nothing else that can be done. She doesn't want to call hospice just yet. So far she's doing ok no bad side effects yet. I hope this works. I pray that xeloda reaches her brain and kills all those little suckers! Steroids have really done a number on her though. She's in bed all day or on the couch because her legs have gotten really really weak.. She already fell several times so she scared to walk. Once she's on the floor theres no way she can get up without help. One day she fell in the morning and she couldnt reach her phone so she stayed there for like an hour till I went over and found her there. Thank God I live right next door and I go over every morning and stay there with her. Good thing that steroids have been cut down to 6mg a day and keep cutting till shes down to 2mg. Hopefully that will help her get strength back. She's been doing excersies with her legs while in bed or when she sitting down.
lumyself- I understand how you feel with the steroids my mom is sick of them. Hope your next mri is good and that you can get off the steroids soon.
0 -
Lore -- sl glad there is a treatment being done. Makes much more sense.
Jill -- that could be a high dose for such a long time when they are treating in other ways. Maybe ask for a knock-back for 4? I did not get the emotional crap with it, just the moon face and weight gain and facial hair (ugh I hate that) and skin plugging up. Do stuff for yourself if you have time? Home facial, things like that. Otherwise I got nothing. The steroids are CRAP but necessary. Sigh.
0 -
Lassman, I hope you get Gamma but Im sure they have your best intentions at heart. My understanding is that there are only a few cheoms that affect brain and I was on one of them, X, when my mets showed up. Howevere, they couldl eave me on that during rads because it is not a conflict. At some point you have to just trust at least for me because i cannot become an oncologist on my own here!
Lore and Jill, the steroids make everything harder. Some days when Im home alone, I feel so lousy, I wonder why I go on. But then we will do something amazing and all my symptoms go away for awhile.
Seems we need a 12 step support structure! Admit we are powerless? Give it to a higher power?
0 -
Lassman - sorry to hear that your brain mets have re-grown, that is really crap news after all you have been through.
Also sorry to hear that so many of you are struggling with the steroids. I have one small question - is anyone else suffering from really poor sleep, I get off OK, then wake and toss and turn ALL night! If so have you been prescribed anything to help with sleep? ( I am not on steroids, but haven't had a proper nights sleep since WBR! just wondering if the WBR is the culprit)
0 -
Jintski,
Sent PM0 -
Jintski- my mom was prescribed xanax to help her get some sleep. Maybe that might help.
0 -
Lassman...I had that combo of drugs,along with depocyt going into my ommaya resevoir in head for brain mets.I had to stop depocyt, because I was building fliud on brain,I now have a shunt.They also stopped the Navelbine and herceptin for 3 weeks,I had trouble walking,now that I am off navelbine I feel stronger.I am back on taxol and herceptin.Feel so much stonger,especially that I stopped steroids.Don't forget everyone has different reactions to meds.Oh yea wasn't sick at all from Navelbine.I will eventually go WBR,that scares the crap out of me.Good Luck.
0 -
although i dont know much about all these drugs and treatment options I just want to show my support and best wishes to each and everyone here...for showing so much of courage and keeping strong..! how do u guys do it..!! u all must have some hidden powers that guides u all through these difficult times..hoping and praying sincerely that everyone here has the best result from their respective treatments and big hug to all the women out here..!! xx
0 -
Jintski,
I had the same problem but am taking Zopilcon (7.5mg). They are mild tranquilisers but I only take it at night. I was told to take a whole tablet but I didn't want to feel dependent on a drug, so I experimented and find that half a tablet is very successful in allowing me to 'let go' into a dreamless, solid sleep. I still get up to go to the loo, don't feel dopey in the head and feel really refreshed in the morning. All my life I've been a bad sleeper and cancer worries just make things worse so these little helpers have been a godsend. Some nights I just go to sleep without one and if I wake about 2a.m. then I will take a quarter of a tablet which gets me through the rest of the night. I may not feel well in other respects but my body is getting good rest and sleep. Don't know if the brand name is the same in the US as here in Germany but I'm sure you could get something similar.
0 -
Steroids and sleep -- ugh. Xanax or ativan is a must, even when you are off the steroids. They just keep the heebie jeebies away from time to time. As my onc says, the last thing you should be worried about is a dependency. Really, think about it! The onc nurses at Chapel Hill call Ativan "Vitamin A"...
Amlg -- sorry DepoCyt didn't work...I'm getting good results...but don't let WBR scare you. Side effects last a while but it's do-able and it can really work!
0 -
Luvmyself: Dealing with steroids: not much to do. I got a book called coping with prednisone which helped me understand what the steroids where doing and how this woman dealt with high doses without weight gain and major side effects. Otherwise, it's just a grim and bear it situation. I debated not doing steroids during WBRT, but I figured that if there was swelling, it's more dangerous in the brain cuz there is no room for the brain the expand. So I took like 1mg/day, which is really nothing.
Amig1: WBR the treatments are nothing to worry about. I did 18 treatments. I think for me the worst has been the no taste, but I was told on 5% get that side effect.
Does anyone have cold intolerance? I used to always be hot (I thought early menopause from chemo), but now I am always cold!!0 -
Jintski
Re: the sleeping pill Barbara mentioned. I have them too and they're pretty good as they do get you off but then your natural sleep pattern takes over so you don't feel hung over in the morning like if you were taking Temazepam. Here in the UK they are called Zopiclone and the lower dose comes as 3.75mg tablets.
Hope you're getting some better quality sleep zzzzzzz
Laurie x
0 -
Thanks for all the sleep advice. Laurie, I am UK too, is Zopiclone prescription only or can it be bought over the counter?
Andrea I know what you mean about cold intolerance, I think mine has gone bad too, I think that's what's making me want to stay in. It was been so windy in the UK recently and I just feel that every blast of wind shivers me to the core! I keep tensing all my muscles against the cold. And cold air blowing through the holes/vents in the back of my wig is really uncomfortable, Here's wishing for some warmer weather soon xx
0 -
Jintski
It's prescription only. My GP was reluctant to give it to me the first time I asked then I pointed out that compared to the chemo, it was the least toxic drug I would be taking! I still think they get their knickers in a bit of a twist about addiction. Like we're worried about addiction LOL
There's supposed to be a cold snap on the way, so get the thermals on and batten down the hatches...
Lx
0 -
luvmyself,
Definitely talk to your doctor about decreasing your steroid dose and coming off as quickly as possible. I wasn't able to taper my dose until almost done with WBR. But now I'm a week off of it and still feel some effects but my mood has definitly improved. I layed in bed a lot while on steroids and was completely miserable. But they can change your dose.
For sleep I take Ambien and get a good 4-5 hours of sleep but do find myself tossing and turning a lot.Its all the steroids.
I have a loss of taste and dry mouth I think from the radiation.
As for steroids...you'll feel much better when you're done with them. Good luck
0 -
Dizziness and swirling head after 4 weeks of finishing WBR, did that happen to anyone here?
0 -
bestfriend05 -- WBR is debilitating and full effects often don't hit til it's over. Yes, dizziness and swirling head -- get lots and lots of rest. Talk to radiation onc if it doesn't stop tho, you may have come down steroids too fast.
0
