Brain Mets Sisters
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DeliriumPie, I had that lump in chest feeling too during and just after WBR. I thought it was my lymph nodes which were enlarged in my first scan. Did your doctors tell you what it might be?
Hindsfeet, Didn't know you were also recovering from other radiation treatments. Is that also since your diagnosis in June? Sorry to hear about the head swelling. I've never heard of that as a SE. For sure you should stay on the steroids if you have swelling. My Chinese medicine doctor told me to drink Chrysanthemum and Honeysuckle tea twice a day which is supposed to help with brain swelling. Also, aloe vera juice, cucumbers, okra, asparagus and dragon fruit to combat some of the negative SEs of radiation. The aloe vera juice was nasty but the rest of it was fine. He told me to make a smoothie of all of that stuff but I thought it was easier to do just eating the foods whole and drinking the aloe vera juice like a shot.
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Hindsfeet, Sorry my last message was sent out before I saw your last post saying you can't eat. You can ignore my Chinese doctor recommendations!
About the 7.1 months. I have never heard that number from any of my doctors. My Mother was told she had 6 months to live after she was diagnosed with Lymphoma and that was 7 years ago now. She is 77 and still working full time. Healthy and energetic. Averages are meaningless to each of us as individual lives.
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Susan I have a cluster of lymphs In the center of my chest so that was my first thought with the pressure was omg they are suffocating me. Especially since I felt the pressure before the dr told me the location. But on the long decadron SE list I read last night it listed shortness of breath and feeling forced breathing when at rest. My swelling was so bad that they had me on massive dosage of 8 mg 4 times a day which even the ro was surprised by. I am on my second dose down since yesterday to 8 mg twice a day. I am hopeful that it will clear my head some because I've been so foggy. Almost like I am someone else entirely out of body experience kind of stuff. Really hoping that's the steroids and not from the lesions. Your posts are always so encouraging to read.
Hindsfeet so sorry you are experiencing such misery right now. Are the rads still ongoing to all those areas? I wonder if pain meds could help with the swallowing?
Wishing a peaceful day to everyone. Last wbr for me today.
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Thanks...the doctor gave me a prescription for liquid pain meds...$200.00. Not buying it. I just picked up the noro tablets, $5. Hard to get down right now. I did eat a little chicken soup today. I lost 5 lbs over the weekend. I feel like I'm disappearing. I will be glad when I can juice the good stuff. Acid drinks...can't do...at least not now. Today, at least I didn't shed tears when swallowing...just "ouch". It is not quite as bad as yesterday. I can see the light at the end of the tunnel.
I finished radiation to the spine, neck, sterum area (femer/hip) Thursday. I also had the Gamma Knife surgery Thursday treating 4 brain tumors. The pin sites are swollen...did you all have pin sites? My eyes are droopy and swollen. Better today...I put green tea bags on them last night, and will do again tonight.
I'm done with radiation. I don't know if I would ever do more...maybe if I had to a Gamma Knife, but what I've just gone through, I'm so done. I' rather just go to heaven. Radiation was extremely hard on me...and the whole not eating thing the pits. I would never now do wbr from what I've been through. I've read about wbr side effects. Not all have them, but no more guesses are chances on my brain...unless it is cyber knife. You ladies are strong...not so me. I don't do side effects well. I have to be independent, and need my brain. I don't have the luxery to be dependent.
I'm going to a holistic college Wednesday. They will be treating me with alternaitve medicine...vitamin c infusion and other vitamin infusion along with diet. I want to feel well, and for quality of life is everything.
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$200 yikes that's crazy. So glad your getting a bit of relief. Hopefully with all your rads completed it will get a little better every day. The rads are so hard both physically and emotionally. Even the first time around when I thought it was "curing" me. The rads were so much harder than chemo and bmx. Hang in there and follow the light at the end of the tunnel.
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Hindsfeet, I agree that the whole not eating thing sucks. I lost 25 pounds and I'm a small person. Everything tasted like straw and I just wasn't hungry very often. My RO threatened to give me appetite meds so I tried to be more conscious about snacking on high calorie foods like nuts. Truth is, I figured out I was about 25 lbs overweight to begin with and this is a good weight for me. It's not healthy to lose it so quickly and radiation is not the way you want to do it but the weight loss was probably a good thing for me. When I was most fatigued and unable to eat, I made the Miracle Broth from the Cancer Fighting Cookbook. Just a bowl of that is chock full of nutrients and not filling. PM me if you want the recipe.
And Hindsfeet, you sound tremendously strong to me. Best of luck with the alternative treatments!
Hugs, Susan
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Hindsfeet I'm thinking of you and hope the SE's get better. Try to stay hydrated, I have trouble swallowing and know how hard it is but you've got to keep sipping water. You can do it!!
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Had scans on Fri., CT, MRI and PET. Saw Doc today. He said: good news first... So I knew this wasn't going to be good. Good news is no edema in brain and radiation appears to have worked. Bad news: lots of progression everywhere else. Much more on bones, now in liver too, on abdominal wall and more in lungs. Doc says to start chemo in the form of taxol and xeloda, I think, I'm a little overwhelmed right now. Said hair will fall out. I just cut it short last Fri for a change. So much for that. I'm honestly not feeling very hopeful right now. Since I was dx it has only progressed. I have more pain, so they're sending me to pain specialist.
Bah humbug. :'-(
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skylotus,
So sorry to hear about the progression. Hoping the taxol and xeloda pushes that all back.
Big hugs, Susan
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Thanks...would like the recipe for the soup...just post it here as someone else might find it worth trying.What is tough for me right now is the pain from radiation is moving over the whole chest cavity. I swallow and feel the pain every where. I fear it might be from a pain syndrome I had years back, RSD. I' know I shouldn't but stressing over eating/drinking but it is hard every time you swallow and tears fill your eyes. My face is better as the swelling is going down in the head. I should be off steroids in a few days, which should help the burning in the stomach. I seem to be allergic to pain meds. Pain meds and other medicine make my face swell, red and itch everywhere. I have a very sensitive stomach.
For the woman suffering from progression, know I too have progression of cancer in the same areas. For those who are her2+ there is targeted therapy that hopefully will control progression. I'm not doing chemo. It is nicer now more is tailored for certain cancers...and we'll make it out of the woods...hopefully. Hate radiation!
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Skylotus and Hindsfeet, you are both in my prayers, hope you can find peace without too many SE bothering you.
((((((hugs))))), Karin
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Hi Susan, Hinds and Tilda, thanks, I start the chemo regimen on Mon. I was told to expect total hair loss, that will be my first experience with that. CMF, which I had initially, 16 years ago, your hair thins.
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Skylotus
Hope the chemo stops the cancer progression quickly without too many side effects. I shaved my head when hair started to fall out with chemo last year - wish I had done it before the radiotherapy had the same effect this year (by then the doctors said scalp too delicate to be shaved so I had 2 weeks of leaving a trail of hair).
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Dear Fierce Blue Bird:
Look at your screen name...do not even mention throwing in a towel or anything else...Just rise up and ask God for coverage of health and peace. Go forth with courage...You can find your way..I along with all these ladies are sending you good thoughts and vibes...We are all in this together and there is value in group strength...Blessings and be strong. Carolyn from Music City
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hi ladies. Did anyone have severe knee swelling from the decadron? Or suggestions on how to manage it? I am struggling to stand up today.
Hope everyone is doing well
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Skylotus, good luck with your new chemo, my hair fell out too from the chemo I was on in 2012. It really was not as bad as I had anticipated, I never liked wearing the wigs but I became a master with head scarfs
DeliriumPie, I'm not on decadron at the moment but both my knees swell so much that I can barely walk at times. I was told that it is probably bursitis but no doctor seem willing to bother with it because they tell me to focus on my cancer treatment and get well first, WTF!!! I did nag until they gave me an MRI of my knee and then they told me there's benign tumor on my femur above my knee but still they said there's nothing they will/can do because of my cancer....My onc doesn't seem to be willing to address the issue either but tells me to go back to the ortho. I've given up and now I just deal with the swelling and do what I can. cancer sucks!!Karin
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Hi Ladies, I had a brain MRI two weeks ago, and it showed 3 of the 4 lesions shrinking, but, alas, new lesions are present, one at the red nuclei. This is a very sensitive part of the brain, so for now, it is being monitored, ie., more MRI's down the road. But, no swelling or edema, so no more steroids, yay! Maybe, actually, probably, I'll lose the 10LBS I put on while on them. I say probably because the new chemo (Taxol and Xeloda) is making me nauseous. Hope everyone is doing well and hanging in there.
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Morning ladies, I've been meaning to get over here and join the party since I was dx with brain mets 2 weeks ago. I'm going to read through some of the more recent posts today and tomorrow and then jump in. Hope you all have a decent day today.
Annie
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Welcome Annie. Sorry to hear about your brain mets. We are here for you!
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So I finally caught up with the last few pages of this thread. I finally have the energy to read a bit the past few days. I was taking benedryl to sleep and it didn't really help and then I was foggy all day. Now at least I'm more alert.
First, Susan - your posts are so informative and helpful. Thank you. I'm normally totally on top of my scans, where I'm at etc., but with the brain mets and being out of it, I have some good questions for my onc now (like cystic vs. solid). I'll let you know what she says.
Also - to the posts on xeloda and ixempra and avastin - thanks ladies. I'm going to speak to my onc about those. I was on xeloda years ago, and it helped with my lungs but not my bones or liver, but it might be something to add for the brain if it does sometimes cross the barrier. Haven't been on the other two yet. So good stuff for me to ask about at my next MO appt in a few weeks.
Other than fatigue and being a bit wobbly, I'm doing well so far. I have 3 more WBR scheduled this week. Then they will scan my head 10+ days later to see how it worked. I've had none of the symptoms that started this ride so that is good. And both my oncs are optimistic. My MO is more worried about my liver at this point. I really hope everything is gone and they can just keep an eye for new ones and zap 'em if needed. But if I need more treatment so be it. I hate no being able to drive.
I'm lucky my sister came to help this week. Laundry is all done, Freezer full of food. My daughter is in heaven with auntie. So I'm thankful for that.
So I think I'll try and go back to bed now. At least lay down.Darn steroids.
Annie
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Hi ladies, I am new to this group. I have been having issues with dizziness, nausea, balance and excessive thirst. Had a brain MRI without contrast and received a call that the radiologist found 3 spots that were not on my previous MRI back in January. He also told me that they found an enlarged lymph node on my lung from a chest X-ray. They want me to come in tomorrow for an MRI with contrast to confirm. I am beyond terrified and would love to hear from others that can relate and she'd some light on what my next steps are.
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@ Annie, that was funny! yes! Darn steroids! I remember them well! ;-)
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Lkott - sorry about your news. Stinks. Please let us know how the mri with contrast goes. Sorry I can't be helpful with what's next, but I'm sending you postive vibes for the best result possible in this situation.
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A question ladies - anyone get tinnitus, or ringing in the ears and just lots of noise during the brain rads. It's been really annoying. Not taking benedryl it got worse so last night I sucked it up and took a different kind of benedryl (liquicap rather than pill). It think it helped a bit. I also put some witch hazel on cotton balls in my ear and think maybe it helped a bit.
I asked the nurse but she said they think its a coincidence. Of course I've never had this experience in my 51 yrs before. Right a coincidence.
If anyone had this and has any ideas, love to hear 'em. If not, I'll just hope it passes when the rads are done. It's just annoying, not debiliating.
All right - time to go back to bed.
Annie
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Annie,
I heard that ear or hearing problems were a common SE of brain radiation. Weird that your nurse would say it's a coincidence. I seem to have developed some kind of ear infection since radiation, my ears are feeling clogged up. I heard that was a common SE. Finally going to ask my GP about it today. I would suggest you talk to your radiation oncologist and/or a ENT specialist. No sense suffering if perhaps there is an easy fix.
Something new popped up for me. The top of my left foot has been numb since Saturday night. Not my whole foot, not my toes, just the top of my foot. Has anyone else experienced something similar?
Hugs, Susan
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I have the ringing in my ears and also just changes in sound levels constantly. I read that it is also a side effect of decadron. Finished wbr three weeks ago and stopped decadron one week ago. It Is glorious to sleep finally, even though it's still only a couple hours at a time. But now I can go right back to sleep instead f getting 2 hours sleep a day. But sleeping is all I want to do now. So tired.
I have numbness in bottom of my feet, not top. But te tip of my tongue and my fingertips are numb too. And sometimes my forehead and sometimes a spot on my shin. Dr has no explanation.
Second cycle of ixempra and xeloda starting Wednesday. Dreading it.
Hope you get some sleep Annie.
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I finished WBR in July and have had three cycles of Xeloda and Avastin since then. My onc has now added an exercise regime. A couple of thoughts on the above posts
I had hearing problems after July. Neither rad doctor nor oncologist can explain. The good news is the Tinnitus has mostly cleared up, and the clogged sensation they think they can do something about if it persists. The bad news is I have permanent hearing loss in both ears of about 15 percent. I already wore one hearing aid (for hearing loss pre C which I put down to a misspent youth). Now need new hearing aids for both ears but at least I can mostly hear again.
I have slight neuropathy (numbness) in fingers and toes.
And I sympathise about the tiredness - some days I could barely get out of bed but it really did improve recently. ( My onc had said tiredness would be worst 4-8 weeks after WBR finished).
My good news though is - at least for now - that the surgery/ WBR/ chemo seems to have controlled the position and my MRI and PET / CT last week showed no signs of active disease. I am almost scared to write that in case I jinx it but I hope it gives hope to others. So I was able to really celebrate my son's 18th birthday last weekend.
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Thanks for all the feedback on the hearing. It confirms what I had read and I'll just deal with it. I did find that cotton balls in witch hazel helped a bit as did a benedryl. I really don't like the benedryl though. I think I actually sleep better without it.
Susan - about the foot. I haven't had that happen but at one point on anti-hormonals my feet were all crazy with numbness or discomfort at different. Massaging gently when numb with some cream would sometimes make the numbness go away. I also found that new shoes affected my feet more at that time until they were broken in a bit.
Bosco - I have to say, I freaked when I read I'd be tired for as long as you say! I hope they are wrong.
But thanks for the info. I've got two more rad sessions. I guess on Wed I'll get a Rx for a CT or MRI on my head and next steps. I hope one is dropping at least one of my decadron daily. It will help with the sleep.
I've also got to get some new head covers. My hair is falling out in a sort of funny way. I look like a boy in my daughters class!
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Bosco19, That is wonderful news!
Went to see my GP yesterday about the clogged ear thing. She said there wasn't an infection. She prescribed Flonase to clear up some nasal congestion, and also suggested I not drink caffeine and drink more water to try to keep things flowing.
Regarding the numb top of foot, she thought it was some kind of superficial nerve damage and that I should not wear tight, uncomfortable shoes, not sit on my foot, and not cross my legs. She thought it would resolve itself.
DeliriumPie, Hope you are able to get a lot of rest. I was so fatigued about 3 months out but have been back to my normal energy level since.
Hugs, Susan
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Bosco - somehow I missed that fab news. Thanks so much for sharing. I'm so pleased you could celebrate with you son. That's what this is all about, right!
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