Brain Mets Sisters
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Donna and Banjo: pulling for you to rally. Hoping the roller coaster does go up again even after these low low cycles.
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Lore:
I would recommend you see a second opinion. She should be on chemo. WBRT was her best option for the number of lesions and at this time I don't think SRS is an option either, but I'm not sure. I'm sure there are chemo drugs, or even nitrate cal chemo, which goes directly into the brain, some ladies here have been on it. Good luck to you and your family. My prayers are with you!!!0 -
Lore81 -- there are indeed drugs that cross the BBB. I start tomorrow on DepoCyt (also know as ARA C). It is administered through a port that is put in the head. Don't know about side effects yet but they appear to be minimal and I've been told I can be back playing tennis in a few weeks. The surgery isn't that easy to have the port installed but it's do-able. So please ask about that because they don't sound as if they are aware! Read throught the website brainmetsbc.org if you haven't already. I think you are in Texas -- can you get your Mom to MD Anderson? It just seems as if there are many options that haven't been explored for her. Triple neg is a b*tch...really narrows options ...but it doesn't mean there aren't any. I WISH YOU THE BEST AND CHECK BACK IN
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Hi ladies i'm sorry you're having such hard times. Banjo i read elsewhere on bco the the terrible fatigue from wbr is cumulative and can even come on after you finished. My sister has leptomenigeal mets and is having chemo via lumbar puncure ( might be something to ask about for lories mom). I wanted to say to you banjo that your foot could be turning in due to nerve impingment in your head or your spine. They've just decided to do rads to my sisters spine as they think a mass is pressing on her spinal nerves and she is falling. That could also cause your foot to turn in ( im not just guessing im a therapist). Hope you dont mind me chiming in, i just wanted to let you know thet the chemo ino cyn spinal column has been really helpful and not had terrible se's ezcept really dry mouth. My very best wishes x
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Cynsister,
I don't have any foot problems - I think you've mixed me up with someone else on this thread...
When I posted on here I was at rock bottom and no amount of telling myself that I would soon feel better had any effect. Guess what? At lunchtime today, I began to feel less terrible, by the evening, I could see that I was improving - not huge amounts but I am definitely on the up. I have managed a small but reasonable dinner and do not feel quite so exhausted. Maybe tomorrow I can go out for the first time in five days!
Barbara
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Sorry banjo is was donnabee who posted about foot drop! Im glad you ferl a bit better, i hope you get to have nice outing tomorrow and that the sun shines for you x
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Thanks everyone for the feedback. Survivor2be- I see you are from Arlington Tx we live here too. Where is it that you go for your treatments my mom goes to Texas oncolgy by MCA and was sent to Baylor in Ftworth to see if the radiologist there has any options for more radiation.
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I work at methodist Dallas, so I go to tx oncology there. I've consulted with dr oshanessey at baylor Dallas cuz she is a triple negative guru. I also consult at UTSW to get a different perspective. Right now I LOVE my treatment team at MDMC. I wouldn't go anywhere else. I hope you find someone you trust!! I'm trying to remwbwr the ft worth doc that my support group goes with, oh: Robyn young! Check her out.
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banjobanjo,
What good news that you started feeling a little bit of optimism! Right now Im sagging a little but look forward my next turn of the corner!! Eventually I want a dinner out someplace delicious and stop relying on wonton soup and milkshakes. I'm a long way from that, but every tiptoe counts (even if it does droop a little....
donna
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Donna,
I can understand how you feel. This time I must admit I got really scared and thought I would either die in the night or end up in hospital and die there (fear made me very melodramatic). Those five days have taught me a real lesson about hanging on - I had virtually given up. I feel even better today and realise how quickly a chemo body can turn from half dead to a revived human being. People on here always talk about the rollercoaster and if I have another bad five days next cycle, then at least I'll know how long I might need to wait before I pick up again. I, too, love to go out for dinner but recently I couldn't imagine ever doing that again or even wanting to.
Hope you feel better soon and get that delicious dinner - let me know what you ate!
Barbara
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Barbara, what type of chemo are you on? Did u take it with radiation or start after? I hope your next cycle goes better!!! (((hugs)))
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I'm on EC, half way through 6 cycles. I started it at the same time as radiation to the spine and WBR - it was tough doing everything together and certainly, if the radiation were not already finished, there is no way I would be physically able to get to those appointments now. The first cycle was a reduced dose because they needed me for daily radiation sessions. The second cycle was okay, just a couple of days feeling off colour, but this third one really walloped me. Yes, I am hoping the next one won't be so bad as I have it on 22nd December! However, following the pattern of this one, I should be feeling okay over Christmas (while my daughters are here) and if I have a rough patch, it should come before New Year (when we do have visitors but not people who need us) and I shall just take to my bed if necessary.
Barbara
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good news simple gamma knife next Tuesday dont change any other plans the rest of the week, no big deal!
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My MRI showed 11 brain mets all very small,I had my consultation today, and I'm going to have 15 WBRT starting Monday, Although my MRI didn't show any swelling I'm starting steroids tomorrow morning. I was wondering if you could give me a rough time-frame of when the fatigue starts, and when my hair will start to fall out? I realize it is probably different for everyone but just hoping for a rough time-frame.
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Just want to say best of luck, hope Gamma zaps those mets.
Jelly
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Ty jelly and best outcomes for ringy too. I gather the radiation process is slow. But I recall chest treatments being exhausting. Going so frequently getting into position etc. Get in your best possible health? That's what I'm doing starting tomorrow for Tuesday treatment. Done shoving trash food in and gonna exercise.
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so far, putting things toether, my hair started falling out in clumps around day 10.
the wbrt is actually pretty good. they give a strange Hannible Lector type type of mask when you are done. Its not bad, but a little confining.
I was having the tx along side a zap of my mantible, but even so, once we got in to the swing of things appts were < 15 minutes.
Now that I'm done as of tuesday this week, I'm anxious to figure out what the time table is for recovery....when will i be at the nadir of tx? will i have a spec of energy for the christmas holidays?
If anyone has a site on WBR that gives more info, i'd appreciate it
thx donna
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My mom has over 40 lesions in her brain, thats what the dr said. Since wbr was already done in oct and there is progression he says its best not to do anymore chemo or wbr. He said she would just get worse from the side effect. He talked to us about hospice and that it;s best to focus on quality of life.I can't believe this I'm losing my mom and she's only 47 mother of 5 youngest just 12 yr. but she is not ready to go. She still walks and feels fine of course shes on decadron and pain meds for the headaches but she not giving up. I'm so scared and don't know what to do. I mentioned md anderson to the dr and he said it was up to us but that he thinks their just gonna say the same thing to us. He did say they have clinic trials but that they usually never work. He said my mom cancer is very aggressive. Well we decided to go for that third opinion. I sent in a request for an appt online. I don't know whats the right thing to do. I don't want her to suffer but also don't wanna just do nothing about it and let her die. Anybody on here have that many lessions and was still able to get help?
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I don't think it matters the number of lesions. You should NEVER give up hope!! Get a second opinion at UTSW or at baylor Dallas. Call MD Anderson. Sometimes it can take awhile to get an appt there and they may want to redo all the diagnostic tests. Make your doc send ALL records to whoever you want to see. It is your mom's right!!! If she's still fighting, then u and the docs need to be as well!!!
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Thanks survivor2be...that was our second opinion..she was sent from Arlington to baylor in Ft.worth. Both team of doctors agreed that was the best thing to do. But just wait around and die? I hope they don't take too long for the appt at md anderson...it will be the third opinion. We just don't know what to do. What if they say the same thing? I don't want to lose hope. Dr said he was sorry but that only thing was a miracle. I do believe in Miracles. I've been praying for my mom everyday since the beggining of all this. She has been very strong. I hate to cry in front of her she says everything will be ok not to worry. She is the sweetest kindest person always worrying about everyone else.
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Oh lore, what a troubled time. We hEAR about these last minute revivals from MDA sometimes ....wishing it will be so for you
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Lore81,
I am shocked at what you and your mother are going through and fully agree that a third opinion is necessary. But if the third opinion is the same, you will need to make every effort to have your mother's end of life a comfortable and peaceful one. Although you don't say so specifically, the impression that comes across is that your mother seems to have accepted this already. If anything can be done to save her, then of course it should be done, but not if it is just a shot in the dark and gives her pointless pain and misery. She sounds like a lovely lady who does not deserve any of this - hope she can be helped.
Barbara
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Thought I'd share experience on DepocCyt chemo treatment through the port in my head for anyone out there facing this or having it discussed. Port was put in a week ago -- surgery not that fun for the first few days after but that was mostly nausea from meds I think. Actual treatment is totally painless and with Decadron doses and a very patient onc who did the procedure herself I didn't have a minute's discomfort. Of course I was awake all day and night but got a lot done. These is a gentle chemo drug but effective and can be used a long time. In fact, I will get 3 more treatments two weeks apart. If the brain/spinal fluid shows cell decline, I go to a once a month maintenance like Zometa. If it doesn't then I do another round of 4 and then we see. But onc says end game is to get reduction and this stuff apparently can do that in my case.All in all a hopeful day and worth the d*** surgery to get the port done (called an Ommayah Resevoir but it's a port for intraventricular chemo delivery by any other name).
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Lore81 -- please let us know the outcome of the third consult. It still seems as if there must be something. Prayers from me.
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Lore81--I see no harm in checking into clinical trials. Also, alternative medicines. Most of all, continue to give your mom the most powerful medicine--your love and support!
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Hi lore81 so sorry you guys are going thru this. It sounds like you are so very close. You say your mom is still up and about, so is her pain under control? It seems amazing that they want to stop treatment when she is still well. I hope if your mom wants to keep on with treatment that you can see another doctor. I've not heard of oncs saying there is nothing else to do when some one is still feeling well. It was explained to us that my sisters treatment is palliative, to help her remain comfortable, she only gets up for an hour or so at a time. But they're still doing treatment. Shes having bloods, chemo into her spine ( she wasn't well enough for the port in her head) and is going to have rads for a spinal met which causes pain and weakness. Much love to you x
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Way to hang in there pq
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cynsister- yes my mom is still up and even doing chores around the house even thought I dont let her cause I don't want her to get tired but she insists. She says she is still able to do things maby at a slower pace but she can do it. She takes decadron for the swelling and hydrocodone when she feels like the headache is coming. What is palliative treatment? I haven't got the appt yet at mda but they did call and I got all her info from her first onc faxed over. Her first onc called me today to ask what the radiation onc he refferred us to had said and I told him that he said he wouldn't recommend more radiation, so Im going to mda. He said that was a good idea but that I should try and get her in quick. I also mentioned about xeloda cause my mom still has some and he said that if she wanted it was fine for her to take them but that I should take her in to get her blood counts. He told me to see if I hear anything from mda over the weekend and if not to take her in to start xeloda if she wants. Does anybody think that would be a good idea I mean right now she hasn't had any chemo since Nov 8th and I read that this could cross the brain barrier.
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Hi lore81 i logged in to see how you are doing. I simply dont understand a doc saying ' take it if she wants to' ?! It seems crazy. Palliative just means that they aren't expecting to get rid of her mets but the treatment is to reduce symptoms. Im hoping you've got to see another onc or will soon as they need to be planning her care not you. If they want your mum to take xeloda as part of her treament plan then they'll check her bloods regularly'. My sister needed transfusions often. Please let us know when you get to see someone new who will pull a plan together for her. Much love x
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3 rings -- hair loss is almost exactly two weeks into a four week rads and then it's gone 3-4 months. the fatigue starts around then too and gets worse until around the 7-8 week mark AFTER you have finished treatment...at least that's what it did to me.
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