Brain Mets Sisters
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Fo all you ladies who are going through something new, and the new treatments that go with it, I am holding your hands and thinking nothing but good thoughts. This really does seem unfair and sucks.
Tomorrow I see my dr for my new chemo. Herceptin, taxoterre and the new drug, ferjeta? Fajita? Whatever.
Thursday I do another mugga scan. Over the weekend, I have lab work pre chemo, which is Monday. Enough of that.
Plans. Plans. Plans. Yesterday I had lunch with my eldest sister and I fell in the restaurant. My jackass foot rolled. I didn fall hard, because I move like a slug. Just kinda slid to the floor. My sister yelled to the older couple, who were horrified, Will you watch our purses ? Then she went with me to the bathroom.
Today, I had lunch with our 2 daughters, and a different sister on a beautiful golf course. Good food, great service, and a ridiculous dessert. Our 2nd son, got a chief's interview in about 3 weeks, for our city's fire department. He is following in his dad's footsteps. (33 years) We could not be happier, nor more proud. He is my sunshine.
The weekend of the 18th,two of my sisters and hubbies, are joining us at the coast for a weekend of R & R. The guys will hike, have beers and cigars at the lodge. Us girls wil stay in jammies, eat nothing but junk, and watch stupid TV. Oh, and sun!!! Should be a blast if past trips are any indication!!! Our oldest boy will be turning 31 that weekend, but he lives in WA and we won't get to see him. Saw him last weekend so...
The 25th is my nephew's fiance's bridal shower so we're caravaning down to Walnut creek. It should be nice. Loads of money. Nice people. Then it will be September...
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I met with the neuro oncologist yesterday to discuss the new brain MRI and treat all my tumors. He decided not to do any radiation right now as they are more worried about all the cancer in my body. Continue systemic chemo and if we are able to ever get that in control, we will think of radiation for the brain. His opinion is that brain WBR is palliative and has too many side effects and if we stopped chemo to give me WBR, they would just come back. He will do a follow up brain MRI in six weeks. Since I have no symptoms, he wants to leave my brain alone for now. I am very confused by this approach as I was sure I was going to start WBR. I am too tired and sick from chemo to even question anything anymore.
Jodi,
You are lucky to have such a large close knit family around you. I only have one brother who lives across the country and two little girls.0 -
the two girls have to be priceless tho. It's so disheartening to think of leaving your children behind.. the worst thing about this disease I think. to prepare them to be tough and fend for themselves.
My own 12 year old decided to clean my pantry. My son had cleaned it and put all the packages of dry goods in gallon glass jars. We have had an infiltration of pantry moths.. and by golly she cleared everything out, made me wash the gallon jars, spread the grains up in the fields for the birds to eat.. a gargantuan project. I think she'll be ok, supported by her brothers and lovely aunt (who drives me bats but o well).
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My family and friends, will be missed the most. Dying does not scare me. Missing out on my children's shenanigans, devastates me. I really try and treasure their every moment these days. My husband is the other sadness. He truly loves me, and he's only 56 years old. Our little maltese, is not enough!!! Our kids have been given instructions, on how to be with daddy. Dinner once a week, and a daily phone call from each of them. He is not to be left alone. He will be the glue of our family. He is almost good enough to take both of our places!!
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wishing every one well.quick ? just had 2 cyber finished yesterday today my7 head hurts on the opposite side Normal?
love and blessings
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Mauimom..... hugs and hopes. Things are improving every week in oncology... hope it takes you for a long ride
Jodi.... Sheeesh, I have to go back to bed after sharing your activities.....
FMG: It seems to be a pattern they are aggressive at first then wait and see?
Love to all my braniac sisters
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Hi, sisters. I'm sorry, I've been reading often but not posting much. I am so inspired by the group of you.... feel like such a slug when I read how much many of you do. Send out the best thoughts I can for all of us, especially those going through such rough times.
I'm due for my follow-up MRI this week (with results not until next week!) and I'm nervous, of course. About 3 months since WBR for diffuse brain mets (because liver and bone mets were not enough, apparently). I'm still wobbly, if not AS bad as I was. I still have partial hearing loss in one ear. I can't deem anything better, so I figure it's probably not. Had progression of other mets last scan, and my TMs have gone way up since then while on Etoposide, with Abraxane coming next. I'm feeling even less optimistic than usual.
Thanks for letting me vent. I must keep up a good act in "public"...
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Don't the permnent deficits suck? I look at my once perfect arm and leg, and I miss them. I need someone or something to hold on for balance almost all of the time. I watch people take so much for granted, just like I used to. Lucky ducks.
Went to the oncologist today. Like a good Queen of Denial, I told her I didnt want to know my results of the cat scan. Just tell me about the new chemo and how fantastic it is going to be. Like I said, I am going to be on 3. Herceptin, Taxoterre and the new one, Fajita or something like that. She really did say it is super promising as far as shrinking the little bastards. The only side effect I am concerned with, is constipation. I will start stool softeners this weekend, pre emptively. I love rice, eat it everyday and I have no intention of eliminating it from my diet!! I wouldn't let her tell me anything else. The power of suggestion would be all it would take to paralyze me. As far as I am concerned, enough is enough. I will jump off each bridge as I have to. Mugga tomorrow morning, and I am focused on where my darling hubby is taking me to breakfast!! Pancakes, eggs and sausage... ummmm
Did I tell you I gained 6 pounds in 3 weeks? 131 and counting. Skinny my entire life. I want a mid life crisis!!! Being chubby could be fun! That and a corvette!!!! I hope everyone is having a better day, and I am thinking about all of you.
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jodimomoffour, hope the new chemocombo works well for you. Love your attitude; it's you and you're sticking to it. Enjoy your pancakes and rice (I love rice too). It is amazing what pleasure certain foods can give, although they often change for me; at the moment I am devouring bio corn on the cob from our local farmer's market - fresh, sweet and irresistible, even though I am too messy to eat it in company. A secret vice. Take care.
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Hey sisters.
Today I completed my last chin radiation. I am developing mouth sores in my mouth and my teeth throb as though they tightened my braces, and i do not wear braces. and i have such dry mouth and swollen throat. what you guys done for mouth issues?
So now it has been officially one full week after my WBR and spine rads. and am now feeling the pain again in my lower back plus shooting pains in my legs and arms, which my rad onc said is to be expected bc of the swelling in the brain and spine from the radiation. it's my birthday on Sunday, and i traditionally do a girls weekend away and so there will be 7 of us staying in a beautiful home in sonoma. I am bummed bc I still have little energy, still can't eat anything but rice porridge and chicken soup and now these stupid mouth sores. so we leave fri morning and i just pray i will be able to enjoy their company and actually eat the food we cook together. and will be so weird to be in a public social environment when i look like an old woman, have no hair, my jaw is numb so food/water just dribbles down my chin. i feel i am 90, instead of 41. i wonder if i can drink wine? what you guys think?
tomorrow, I see my onc to plan next steps in treatment which may mean either chemo in my lumbar if there is cancer in my spinal fluid, or chemo in my brain, which completely freaks me out. who has done either of these routes and how freaky/painful/effective are these?
formygirls: you will be my twin sister in this journey since we both have the LM diagnosis. Their first treatment choice was the WBR and spine rads but that's because I was having really really bad headaches and when i was going # 2 in the bathroom, my back was really painful and when i coughed or sneezed. so their goal was to relive my pain. its hard, bc I also have cancer in my chest lymph nodes so i worry about what's going on in there while we do all this radiation. how long have you had the LM diagnosis? and what specific treatment for that have you had? the chemo into your brain?
mauimom: for the LM, my onc started with the WBR, which I just completed 10 of last Wednesday. It sucked. my docs wanted that treated first bc of my really bad headaches. I meet w my onc tomorrow to scheduled the Lumbar puncture to see if its in fluid in my spinal chord. and then decide which chemo and where, whether directly in my lumbar or in my brain. which both COMPLETELY terrify me. so if anyone has any experiences with any of that to help me, much appreciated!
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Spark,treat each one of your side effects, the best you can. I use a straw 99% of the time for the coughing sputtering dribbling etc. I hope you have blast on your ladies weekend. It is supposed to be hot, so bring your coolest jammies. Let your friends wine and dine you. If mine are any example, they will love taking care of you. Eat and drink at your pleasure. It's a little late for rules! Focus on the good!! A weekend get away is always good!! Hopefully, your friends will have some ideas for the side effects, and a different perspective on all of this. I hope Monday, you feel much better, and are refreshed and ready to take one day at a time. No living things twice, badly. I am not that smart, but that is pretty stupid. Happy brithday and weekend. xoxoxoxo
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Spark,treat each one of your side effects, the best you can. I use a straw 99% of the time for the coughing sputtering dribbling etc. I hope you have blast on your ladies weekend. It is supposed to be hot, so bring your coolest jammies. Let your friends wine and dine you. If mine are any example, they will love taking care of you. Eat and drink at your pleasure. It's a little late for rules! Focus on the good!! A weekend get away is always good!! Hopefully, your friends will have some ideas for the side effects, and a different perspective on all of this. I hope Monday, you feel much better, and are refreshed and ready to take one day at a time. No living things twice, badly. I am not that smart, but that is pretty stupid. Happy brithday and weekend. xoxoxoxo
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evening ladies..xx
jodi..im on number 5 tax + herceptin( not on ya spicy fahitas though..lol) and i have found it easier than when i was on FEC i get a lil bit tired after the weekend steiods n anti sickiesday on the sofa sorts that....hope its the same for you..and it hasnt messed up my taste as much as before either,,xx
good luck
tracy..xx
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Thank you Tracy. I have a good feeling about this new bag of tricks. Should be a long day of infusion. 4 bags? We shall see. I hope I breeze through it like I have all the chemos so far. Nothing could be worse than radiation Ugh.
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Quickie for ma homies who have had WBR "mum you can't write that - that's what kids say - they'll think you're weird!"
7 days post last one of 5.
Did you feel tired?
Does food taste a bit weird like you have no taste buds?
Did you get any ongoing headaches (not too bad but feel someone pressing on my eyeballs on the inside like when I had a migraine.
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L..x
i had 5 wbr and all i felt was weak at the knees like id had a 'few'
when i was on FEC i couldnt taste anything it was horrible...i had this weird notion for salad cream and put it on everything so i could taste it...it was like being pregnant and cravings
on TAX + herceptin #5 next week and i havent been ill and can eat most things...as my wasteline can prove..lol
being tired....only really after the weekend of my chemo when im of all the meds they give ya to munch....
i have this feeling in the balls of my feet like i have been stood in heels all day..not pins n needles like they keep asking does anyone else have this?
all the breast
tracy..xx
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Tracy
I wasn't too bad with FEC but Tax completely wiped me out to the point of lying in bed and crawling to the shower on my hands and knees!
Had some foot and hand neuropathy but not the sensation you describe. Having said that I can't remember the last time I did heels so maybe can't remember the feelin!
Feeling knackered and hair starting to shed - least of my worries!
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Hmm, Tracy have you had fascitis before? Makes your heels hurt real bad.
Well, I didnt have WBR, but apparently the Rads to eyes that were done in May are gonna reshape my face to look like a guy on Outer Limits.
Funny thing about my MO. She's pretty pessimistic. Gave me 2 years (2 years ago) and never wants to treat side effects or new mets unless I push. She gives me tons of lortab and ativan, like, knock yourself out, literally. But with the eyes, it was "watch it for 5 months" and now with the rotator cuff tear, we will wait for 9/11/12 CT's before calling a specialist. Why? Because he/she will ask MO what the 6 month life expectancy is.
So these procedures on my brain and eyes might be wasteful to her as she already knows the outcome is poor. I would have vision loss and brain loss by now if I had not pushed.
I don't know if I can go on like that, see my tombstone in her eyes but feeling its worth working on it with the other doctors.
thx
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Kathy, i know you've had to create your own team and push for all these treatments. Your onc sounds like a real Debbie Downer. Is there a reason you stay with her? You've obviously proved her wrong in so many ways. Paula
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alesta: I had all those symptoms and then some. I am 9 days out from my last WBR and I still have dry mouth, no taste, shooting pains down my legs/wobbly, and headaches. the onc said its bc of the cumulative effects of radiation swelling your brain and things can get worse before they get better.
i myself am still dealing w all those symptoms plus mouth sores.
I get a lumbar puncture on Tues to see if its in my spinal fluid.
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K lo, my first dr was so negative and doomsday, I switched and went with someone more in keeping with hubby and I. We find things funny when they are absurd, and she always acted like she was getting ready for my funeral. Mind you, she had NEVER met us before the diagnosis. She might have an MD next to her name, but I am old enough to be her mother!! She has never been married, has zero children, and has not lived half as long as me!! She doesn't know everything! Try and switch Drs. Some are so much better than others. Besides, if we have to do all of this, we shouldn't dread seeing our Dr. You sound like you're fun, and that shouldn't have to change for the so called professional. Your wait time, sounds absurd. xoxoxox
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Had my MRI this morning - I swear it was a more musical bunch of whacks and bumps than usual. And of course I'm trying to intrepret the tech's tone and questions..... I'm guessing by both that the buggers aren't gone for sure. Maybe, tho, they're not AS bad. It'll be a long wait until Tuesday.
Hope you guys find some fun things to do this weekend. I have two sisters in visiting, so I'm putting the onus on them to come up with something amusing. Paula
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Alesta, i had leftover symptoms from wbr for weeks - maybe even more than a month. I finished in mid-April and if you count baldness, then, well, I'm working on four months of side-effects! Seriously though, my radiation onc said it could be months with some side-effects or that you feel fine for a while and something may pop up out of the blue.
spark, good luck with the lumbar puncture next week. Mine wasn't bad. The worst of it was the lidocaine. Wednesday I had my first intrathecal herceptin. I'm hoping it has something to do with having to fly home after, but it totally kicked my behind. I can no longer say that I've never thrown up on a plane. Gross. And my head and neck were in such pain. I've been in to my regular office each day for fluids and meds and am just starting to feel semi-ok.
Has anyone else done intrathecal herceptin? I thought it was supposed to be well tolerated (in the few reported cases) but now I'm scared for the next one.
Sorry.0 -
Just went and saw the movie, The Campaign. Not sure if I cared for it or not. I will have to think about it. I know this much, there wasn't one character I cared about. It is 88 degrees in Northern California at this exact time. The theatre was a nice reprieve. Not much to say, besides I'm hungry. Had rice, and It's It, cookies, and apples with caramel and a gatorade. Is that balanced, or what?
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Why do they make you wait soooo long? I barely make it back home, and they're calling with results.
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So, Jodi, what were the results? and what are you taking or drinking, I want some. You are effervescent.
I have never enjoyed Will ..... whats his name from SNL. Too obvious. But there may be a role where he nails it.
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My results were a mixed bag. Some good, some bad and some changed. That was plenty of info for me. Just tell me what and when the new chemo is. K-Lo, the only meds I take are 4 mg of dec, to increase my appetite, make me have an all over feeling of wellness, advil as needed 3-4 times a week, and my adivan for sleep. I take 3 mgs between the two showing of the Big Bang Theory. I wish I could drink. I would be a sot. Every once in a while, I will sip on a beer or a wine cooler. It reminds me of the olden days, when booze was so much fun!! Now, eating is my vice.
I start this new chemo, on Monday Am. Trying to stay away from what other epole are experiencing. Way too much power of suggestion. I hope you're feeling groovy and having a great weekend. We are having dinner with my sisters and hubbies tonite, and going to a cute Italian Cafe with friends tomorrow. You are a sweet person. xoxoxox
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Power of Suggestion: good idea for a thread. My mental state is so big with me.
Its funny, when you let yourself follow the positive and try to enjoy life and be cheerful, people tend to forget. That's nice. Except , I always want my DH to say, "Let me get that". Poor guy he's the only one I want to lean on.
Now, I'm the pill popper. I take Ritalin. But I think I need a long-acting one because sometimes I don't have the energy to take it ha ha!
But then there's foolish energy. One thing I really enjoy is taking dog to creek. Usually, this creek is not slippery. I went down THREE times yesterday. Actually tatsed it, thats how far I went. No one to see me tho, so I was able to keep dignity.
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I say we take whatever makes us feel the best. I never take adivan during the day. My balance is jacked enough. I am a faller in place. I move like a sloth because the idea of me taking a spill, is super unattractive. If no one but the pooch saw you fall, it never happened. He's not talkin'!!! Take care. xoxo
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jodimom...the best stool softener is a teabag from the Chinese grocer's - it is called slim tea, or diet tea, or skinny tea. I go to a genuine Oriental grocer's. I brew one bag and keep it on the counter. I usually find that I am a bit constipated after infusions and drink the whole little cup. I hate diarrhea too tho, so i often just have a sip, then another sip later on. It is not hard to figure out how much to drink. Regularity is what I want. It is senna which is what is in senokat or 'smooth moves'...but i think the dosage is stronger . I think one day I had 3 bags and then whoof.. that was way too many. but i had been in the hospital or something.
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