Brain Mets Sisters
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Spark: I have been through chemo and by far the WBR was the toughest obstacle for me. I was just so damn tired! I got better about 2 months later. I mean I was dog tired.
You'll do fine. We will help with the side effects.
Apple- cute pup!0 -
I can't find Rohm to privately message. Help.
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banjo, how long after did you feel better?
every day for me, it's a battle bw feeling like someone shot a hole in my stomach, bc have heartburn or am starving or what, i don't even know. from the steroids, i assume. then i try to eat some porridge, or chicken soup, then just sit and hope it stays in there, and feel super queasy and want to yak. my head generally feels like i am wearing a helmut the entire time. and then i have a weird taste in my mouth 24/7.
i just finished 7 of 10. and have a 2 day break for the weekend. i am hoping i will feel ok these next 2 days? i cant wait for this to be over. then of course they frickin extended me with the jaw field.
am so not a happy person.
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Jodi
If you go to members list and look up rohm her name comes up with a link to her blog spot. She went into hospice a few days ago. I've tried to post on her blog but my phone won't let me so I'll try from my comp tomorrow. According to the site she's still checking in here.
Laurie x0 -
Thank you Laurie. xoxox
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Hi Rohm, I hope things are going peacefully for you. I am thinking of you and your family. xoxoxxo Jodi
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Hi all, thanks for thinking of me. I've still been reading, but I hate posting depressing news and this hospice thing takes a lot to get organized! We've got so many people coming and going you wouldn't believe it. They are a help, but holy cow there are a lot of them.
Here's the low down. I did two rounds of intrathecal depocyt and it just didn't hold the cancer in check. Two weeks ago I was having some balance and numbness (left leg) issures, but I was still walking a couple miles a day (with hiking poles for some extra support). The next day I started to lose control of that left leg and fell down 3 times. I decided I needed a walker and got one. I used the walker for a day and half and then I lost more leg control and needed a wheelchair. At this point I had a long, tough talk with my oncologist and decided it was time for hospice. It just happened so fast you wouldn't believe it.
When I look at the MRI of my brain and spinal cord they are just completely sprinkled with tiny mets, making it hard for me to get into trials and making any targeted radiation essentially impossible. The frustrating part is that my body remains completely clean, my BBB was just to tight to let the good stuff in and by the time we knew I had lepto. mets they were too advanced for the depocyt to get ahead of them.
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Spark,
I had a very bad time but it was because I was having WBR, radiotherapy to my spine and aggressive EC chemo all at the same time - the chemo hit me badly and it was hard going for daily WBR (21 treatments). I was feeling really weak, sick and feeble all through the chemo and had a middle ear infection and asymptomatic pneumonia. I blame all of this on the chemo because I don't think the radiotherapy caused any side effects. As soon as I was finished with the EC and started on Xeloda I began to recover and feel more my normal self. My hearing is still a problem and something that I need to get investigated but I try to keep away from doctors as much as possible if it's not cancer-related; just a reflex attitude to having had so many doctor appointments...
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Rohm, thinking of you - I'm shocked at the speed and very saddened. Hope you get excellent care and support.
Barbara
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Rohm
Thinking about you and hope you're getting everything you need to keep you comfortable and really top notch ice cream when you want it!
Hugs to you and your family. You are one hell of a fabulous woman!
Laurie x0 -
Rohm so sorry you are dealing with this. I read your blog and so glad you fired the first hospice team, it sounds like they are taking good care of you know. Praying for strength for your DH and comfort for you. Glad to hear you still enjoy eating and saw the array of Fenton ice cream delievered from friends, I say pull out the spoons and have an ice cream social!
Take care Rohm!
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Rohm,
I am sorry to hear about your struggle, wish there was a way already to put an end to this dreaded disease. Wishing u peace and sending a lot of prayers your way to keep u strong, love and hugs xx
Bestfriend
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best of luck and all Rohm..
I had the best ice cream ever yesterday, home made at a Persian restaurant, flavored with rosewater, cardamom, saffron and pistachios. I'm thinking you could just stir some rosewater into some vanilla and it could kind of taste like that.
i don't like ice cream very much but thoroughly enjoyed that bowl. I'm sorry you've had such a sudden shock.. hope things get better.
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Hey all. I have a break from WBR since it's the weekend. I am considering skipping the steroids these 2 days... what do you think? i have been taking 2 a day. or maybe wil just take 1... i have 3 more WBR next week...
I am such a foodie. it makes me depressed not to enjoy or be able to eat anything bc my stomach is so queasy or nauseaus. I spent the night on the toilet last night. after attempting some linguini w clams. bad choice, I know. but I was desperate to eat something with some flavor and i tried popping a prilosec before. apparently didnt work.
i started rads at 137, am no at 129. i needed to lose the weight, but not as much fun when am not feeling cute and able to wear skinny jeans and go out.
Banjo, thank you so much to telling me your treatment protocol. I think that's the most helpful for some reason. when I read about others going thru similar and then say that these symptoms do actually go away and that i will feel "ok" soon. a light at the end of the tunnel sort of thing.
anyone else? words of wisdom that you can get thru WBR and these symptoms will go away? anyone else hav numb chin???
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Also, Hey anyone else out there have numb chin??
The worst for me is the queasiness from the steroids, like heartburn with the nausea from the radiation. I feel like I can't win. Am throwing up, diarrhea, etc.
My question for you all is about numb chin... I have it, but they say they can't find anything on the scans to exactly pinpoint why I have the numb chin. so now they want to radiate my jaw. they "suspect" it may a miniscule bit of cancer there that the scans aren't picking up. regardless, all of this is making me freak out and nervous.
Did your numb chin get better???
anyone else have experience with this?
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Spark, take your steroids till the rads are over. They do a specific job.Withmy docs ok, I weaned myself off 2 days after I was done. Ask you radiologist when you should wean off of them. They suck but...
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Lovely Rohm, thanks for touching base! So kind. We really have a special bond and we are here all the way. I realize your head must be reeling with the real-life facts. One wonders if she will be so out of it when the big time comes. But it seems many of us are orchestrating our own care and decision which feels good- being able to control what happens to us. I am afraid of being out of control.
Cathy, I hope you will find inspiration here. I thought brain mets would be a deal-breaker for me until my friend Debbie told about her friend who lived 10 years with it. And I had seen this woman around, functioning.
No one knows. As Jodi tries to remind us, we have today.
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K-Lo, I am nothing more than a nag and bossie cow. Ask my family!!
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Thank you K-Lou for the words of encouragement. I do find hope and inspiration here daily! It just seems sometimes I am on the fast train and I want off!
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Just dropped our grandaughter and bestie, off at the airport after 14 days at the 'Grandparent's Resort'. It took 2 days to get their stuff all together, with the help of one of my favorite nieces. They were delightful, what almost 10 year old isn't? Our house is so quiet!! Besides the sicko movie my husband is watching. Does he not know, or not care that these shoot em up movies, kill my already sensitive head? Head phones? Plugs?
My grandie, asked me, 'Just how do you get cancer, Grammie?' I told her I wasn't sure but she'll never get it. The Drs will make sure it is a thing of the past when she is my age. I just love that child. I think she's my favorite.
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Hi girls,
I dont know if u have come across this before a new technology to treat inoperable brain tumors in Washington in Branes Jewish Hospital and Cleveland clinic Ohio
http://www.barnesjewish.org/neurosciences/hyperthermia-brain-tumor-treatment
http://www.youtube.com/watch?gl=SN&feature=relmfu&hl=fr&v=n5ssGId1gS4
Bestfriend
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Cat scan tomorrow. Get to see if and where the traveling gypsies have landed. Everytime I have a scan, I get a new chemo. It's been since February. Not too nervous, but scanxiety always gets to me. I do look forward to the iodine contrast. I love that warm feeling. Weirdo. How is everyone?
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I am so bummed. Today, although not myself, I was finally feeling a tiny bit better. this 2 day weekend break makes me feel like i am on the mend, but then of course I have to go back tomorrow. I have 3 more. am so dreading it. and then like i said they extended me another 7 days bc of my numb chin so they will add my jaw tomorrow too.
jodi, scans are brutal for me bc they can never find a vein to access for the IV contrast. I only have 1 arm they can use and literally, I have been deemed "the hardest stick" and its always painful for me.
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jodimomoffour: Best of luck with your scan - love the gypsy metaphor - hope there are no caravans...
spark: Just keep going; it will be worth it. You've come part way and there is an end in sight. You can make it.
Barbara
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Good morning ladies, I am drinking my gross contrast getting ready to be scanned. I mixed it with gatorade so hopefully my veins will be well hydrated. Cant wait till it's over. Breathe!!! hugs Jodi Spark, I am glad you got a little break. I loved mine. It's almost over. Yay!
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Spark,
We cant have you suffering on top of suffering!. Have you tried EMLA for the IV stick areas? A tube lasts a long time for my port so you could apply it in the usual vein-stick areas.. Just aint fair!
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jodi, banjo, and k-lo: you guys are so helping me through this, you have no idea...
for now, no scans for a while i guess? i was super scanned before they started the rads: back mri, brain mri, ct scan, bone scan, pet scan, neck mri, face mri.... hard to do the emla since they have no idea where they will strike!
I had the port. it was removed in Feb. hated it every single day.
i have 2 more WBR with lower back rads left. plus the 8 more jaw. anyone else have jaw done? she told me I will have mouth sores for up to 6 weeks and no taste in my mouth.
after I am done w the WBR wednesday, how soon will I feel better from that? in terms of the nausea and stomach crap?
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Spark, You have a little ways to go. I have never heard of the chin thing you have going on. That would drive me nuts. Hopefully, they'll be able to give you a rinse to keep the soreness down. You do sound better already. The nausea and stomach problems seem to get better everyday. Eat only what sounds good, but make sure you eat and drink. I found myself not eating or drinking at all. Not good. The taste thing is bizarre. Things tasted like pepper even if they weren't made with pepper. I was ready to call 911 on everything!!! Almost everything is back to normal. I still have no filters, and this crying thing is NOT me. Remember, it's all been since March.. It really seems like a long time ago. It wasn't. I'm with you Spark, and you will get through this. It sucks. Hugs Jodi
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Jody, If you have no appetite but know you must eat, what do you make yourself take in? I thought berries/smoothie but now Im thinking protein as I am losing weight rather quickly.
thx
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Spark: as I was having chemo at the same time, I can't distinguish which of my side effects were from the radiation. For weeks I didn't want to eat because I had no appetite at all and nothing tasted like it should - I lived on crackers, cheese and cucumber and very little of those. I quickly lost 10kg. Eventually, my oncologist put me back on steroids (low dose) and my appetite improved. That and the weakness were the worst things and they did take weeks to improve. But they DID IMPROVE and this will happen for you too. It is very hard to have patience when you feel so awful, but it is the only way through.
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