Bone Mets Thread
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Hi Z! Welcome back! I flew to Boise this afternoon to see the solar eclipse! I wasn't planning on it, but then a friend called and said I need to go- my brother lives here and will be taking an NPR tour group of thirty in a schoolbus to see the totality- I will be up at Bogus Basin with friends having a picnic at about 99.5%, and being up high at this ski resort, we should be able to see it coming and going across the sky like a tornado or something. We'll be picnicking with mimosas- we're going huckleberry and blackberry picking on Thursday, so hope to make some rustic tarts for the tour group, who have to get up at four am.
About the kidnesy stone- well, It was my 3rd kidney stone, actually- the first one was six months after my daughter was born, they said it was caused by the way she was sitting where she just crimped a ureter and the stone built up, and the second was how I got my MBC diagnosis, because the stone formed when my calcium levels had gotten so high from the bone mets- in that case it was actually lucky because they said another month or two and I would have needed a rod support on my femur. Not sure about this last one, it was large but passed quickly (they put you on an IV to flush it out), and once it goes the pain level drops to zero immediately- I was surprised how quickly I was OK to accept the idea of dying once I was in crushing pain- quality of life its pretty much everything- and better understand now how people can decide they've had enough, while their loved ones (who feel fine) just want them to keep fighting
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Lindalou - are you a side sleeper? I am, and i find the firm mattresses cause me to toss and turn like crazy all night. One hip starts to hurt, so I roll over, then that hip starts to hurt. I liken myself to a rotisserie chicken. The temperpedic is the only mattress that eases that. I not only have mets in my spine, but also have 3 bad discs and a mild case of scoliosis. If my mattress isn't just right I can barely get out of bed and stand up straight in the morning. Our 1st temperpedic took care of that, then over a year ago, I was struggling again and slept in our guest room because of Dh snoring one night. When I got up the next morning realized I was not struggling to stand up. So eventually we moved to that room. We were going to just switch mattresses when I got the idea of an adjustable. The last time we mattress shopped I noticed they have so many different types now, I'm so afraid of getting the wrong one.
Hugs and prayers
Claudia
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Cure-ious, you have fun in Idaho! What a great idea! I love the mountains in Idaho, we skied in Sun valley and we have been rafting on the middle fork salmon river. Such beautiful country!
Hugs and prayers
Claudia
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Have any of you considered trying the Budwig Diet? My daughter came across it and sent me a link: www.cancertutor.com/budwig/ looks interesting even though not proven. There are many good testimonials..
Thoughts/comments??
Ronnie
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hi everyone, just spent last half hr reading posts. I have taken a break from posting, but after reading some posts, I decided to chime in.
Regarding mattresses, our son as a birthday gift last year , put a foam mattress on our bed. I think they are $100 , not sure where he got it, Walmart maybe? Anyway, it has been a life saver. With bone mets I too was tossing & turning all night .
Last year, about this time I got septic while on Xeloda. 4 different bacteria in my blood stream. I thought that was it, this is how I die. While I survived, it completely zapped my strength. PET Ct in Jan showed continued progression of bone mets. Dr said I need IV chemo, I said no, it will kill me, I still am weak from sepsis. I did quadromet, 2 rounds just to do something. In June I feel like I am finally getting strength back. I have been taking aromison too, just to feel like I am doing something. About a month ago I notice some swelling around my left eye. My MO didn't notice it until I said something , her ARNP was in room too & asked if I wanted MRI of brain, I had one in Feb that was clean, but I said yes. 2 days later I am getting Zometta, after having had MRI & my MO calls & says I need to go to hospital for neuro oncology consult & RO consult. MRI showed tumor behind left eye, & they wanted to r/o leptomeningeal cancer. After an MRI of my spine & a lumbar puncture LM was ruled out . Stay w/me now, cause here comes the good part. I initially refused the RO consult cause I have a RO I go to & trust more than any of my dr's. Then I decided can't hurt to get 2nd opinion. This very young doctor comes in & I tell him my RO says he will radiate 2times a day so as to do least amt damage to healthy tissue around eye. My RO plan is to kill cancer. My 2nd opinion says he would have me get zapped once a day, because "this is only palliative " I thanked him & said you can leave, I won't be using your services. Strangely he sat in the chair across from me for a good 5 mins just staring at me.
Sorry such a long post. I hope our newbies take something away from this. I have been at this a long time now. Your body, your fight, & it isn't over until you say so .
Huggs to all, Su
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Good one Su, good learning lesson for the young RO.!
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Welcome to all newcomers. This is the place for info, knowledge and support.
Momall - you remember where I live huh? Can't be surprised and can't be in a hurry. I'm continuing Taxol until liver pathology comes back. I have never felt so crappy since dx, so tired and weak. I am finally finding an adequate dosage of anti-nausea meds to stop vomiting and keeping some food down.
Good to see some traveling. Enjoy!
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Ronnie, I read that the first time as the Budweiser diet...
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Maire67, you're over 12 years out? I'm sure some of our newer members would love to hear your story for inspiration. (I haven't read everything, so hopefully I'm not asking you for something you have already done!)
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Ronnie, I've tried Budwig and I've tried just the FOCC portion added to ketogenics, which was much easier to maintain. Now I'm in a different direction entirely.
I have the book for Budwig, so if you have any questions, I'd be happy to look stuff up. There is a lot of misinformation about the diet (go figure!), so don't believe everything you read on-line.
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As for travel, I decided to see as much as possible and damn the credit card bills! After all, anyone can get hit by a bus at any time. We may be able to see our bus coming, but it doesn't really change the fact that life can be fleeting under even the best circumstances.
I would just recommend bringing along some prophylactic antibiotics. When we went to Venice, it looked like such a short walk to the hotel, but I was dragging my carry-on up and down all those stairs on all those bridges with my lymphedema arm (so I could hold the bannister with my right hand). Well, the fever started that night and it was bad!!! My second bout with cellulitis and it was our first night in Venice of all things! Thankfully, the fever lowered a bit by the morning (down to 101), but I still felt like complete crap and I still went sightseeing...I just gave up earlier than I would normally. I had some antibiotics for my jaw necrosis, and I took those until I could see the doctor on the cruise ship, but as soon as I got back, I asked my GP for a prescription better suited for cellulitis. Now everywhere I go I take them along...even on overnights away...which is, of course, the best way to make sure it never happens again! Well, that and remembering I have limitations! LOL! When in Venice, take the vaporetto.
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Thanks Kris. I'm really looking forward to my trip. We were in Florida March/April and my back and hips and arm were so painful I couldn't do anything. The pain disappeared after my first few weeks on letrozole, Ibrance, and Xgeva. Hoping this will continue so I can actually have some active fun this time...so grateful for these wonder drugs. White count was only 2 when I finished first round of IbraNCE AND DID not go up during the week off so I hope it doesn't go too low and they need to stop the IBRANCE. Thanks for the encouragement. lady olivia
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Cure-ious, what a great place to be during the eclipse. Enjoy every moment.
LindaE, I am sorry to hear poorly you are feeling. I continue to lift you up in prayer. I hope that the results of your biopsy provide the information needed to redirect your care to a better treatment plan that leads to relief from that crappy feeling you have right now. Big((hugs)).
Milaandra, I second your recommendation to take an antibiotic on a trip. My blood counts were low last year, and my MO prescribed an antibiotic. I took those pills with me. I never did need to take the, but I knew I had them, just in case.
Ladyolivia, My white court went down to 1.1 and the neutrophils (ANC) to 0.4 during my first round of Ibrance, and it took several weeks for it to rebound. Once my counts were within acceptable levels, I was able to start round 2, but it was at a reduced dose. I have had good results at 100 mg, but sometimes I have to take two week breaks instead of just one week. Hopefully, you will be able to continue, too.
Mom, it is always good to hear from you. You and Dani remain in my prayers. As you know, I worry about you, so please be sure to take care of yourself. I am going to stop now so I don't break your record for length of posts! Lol.
Hugs and prayers, Lynne
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Sue2009 my heart sank – how could he? People that never had a/t serious happen to them, aside from only getting cold clinical teaching from Hospital, are untouched of someone's else's wants, needs and zest for life. Tons and tons of books of medical professionals that change real fast once diagnosed with something serious. Or even not serious. Thanks for the post. Very real. Kudos to YOU!
Lynne that was funny.
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hmmm...Budweiser diet,eh? LOL.
Linda, hope the nausea goes away and you start feeling better!
Su- we should get paid to teach the newbies...not even kidding about it.
LP story for today ...My turn arrives for the dreaded LM test this morning and I'm calm...mostly. You all and the brain mets sisters had talked me off the ledge. So, I climb up on the table and young doc proceeds to look at pix and says "This looks like a good spot." I keep quiet. He preps and injects. Can't find the sweet spot. Doesn't really hurt so I keep quiet. He digs around ...No CSF. Tips the table. No CSF. Says bear Down I'm thinking WTF...that was babies...I don't know how to self squeeze spinal fluid. He says "I've never seen That before." I'm thinking wtf.
He says "let's start over". 15 minutes later I have a new doc doing the next go round. Done in ten minutes.
90 minutes and two LPs. Hope it doesn't double the risk for headache... Hoping they find nothing!!!
A little sore but that's all.
Yikes.
Milaandra - Venice looks amazing! Antibiotics added to trip packing list! Hope you were able to enjoy.
Hugs to all
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Milaandre Long story. I was diagnosed in 2005 with stage3 ILC. I was going to have a hysterectomy at age 56. Tired of having 3 week periods. Doc spotted a slight bulge on my breast. 5 days later I was having ultrasound and guided biopsy. I had had a mammo and ultrasound 6 months earlier. Only an MRI confirmed it was ILC. I had lumpectomy. Margins not clear. One sentinel node not clear. Second opinion agreed a mastectomy one month later I had it. No reconstruction. Margins close to chest wall. One more node positive
Good news I was ER+PR+HER +. I was among the first to get Herceptin in my cancer center. However after 3 ACs and three hospitalizations due to infected port and other infections it was decided I shouldn't try another round. I have an underlying condition that gives me low white counts to begin with. Then I had taxol herceptin and 6 weeks of rads. I was able to return to work when I started rads. I worked with the public so lots of immune issues.
Femara for one year. Then Aromasinin for 5 more. Femara knocked me out. Aromasin was a lot better.
My MO kept me coming every year after that. I was thinking I was free and clear. She said it would come back. So I had 10 good years. Worked and retired at 66. Two years ago I had a PET. Found atypical mole on my remaining breast. This year a PET showed mets in spine, pelvis, thoracic ribs and femur. I had been experience more back pain than usual. I have arthritis but this was different.
I had great care. I had a family physician and gyn who were always looking out for me. My Family doc probably saved my life when he insisted that a thoracic surg remove my port when the idiot who put it in refused. The infection was so bad they removed a good chunk of me by my shoulder
So that's my story. I came here again because everyone on this breast cancer.org helped the first time around. I was so lucky to see my kids get married and enjoy my grandchildren. I have dealt with some serious family problems too. That is to say I have lived my life like everyone else. Most of it really great.
I am older now . It makes me sad that so many young ones are here. I've lost a brother and niece to this disease at very young ages. So I'm on Faslodex and Xgeva since June.
Iwrite. That's an awful story but I must say that the bear down part made me smile. I hope it comes out good after all that.
Best to all
Maire.
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Maire- It sounds like you've had quite a ride. So glad you are here.
I understand your feeling about our younger members here. I want more life for these friends!!
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Kathryn - OMG. I could not have gotten through that without sedatives. I could barely read it without sedatives. I am so glad that is over. How are you feeling?
Cure-ious. Headed to Lincoln Nebraska for the eclipse. Smack in the middle. Should have 2+ minutes of eclipse. Kidney stones OMG.
Sue- that was an intellectual kick in the nuts to that RO. and well deserved. nice work. Second opinions are the best when they make realize how good the first opinion you got was.
Babs - you are rocking the trial. Keep going.
This is one tough crowd.
>Z<
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Thank you Sue2009 for the inspiration to tell the doctors no and to go away when you feel the urge. I have a few I have had to write to even, just so they know what they said or did or did not do has brought into my life by way of unnecessary worry, fear, feeling they did not have my back and such. Wish I could find a doctor I trust, really do.
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I'm curious, for those of you who take Ibrance and have low WBC counts, can they give Neulasta to boost counts or is that not an option with Ibrance?
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Barbara, it's not recommended. Some oncs occasionally do it, but Pfizer's literature clearly says it's not recommended.
Yikes, Kathryn! What an experience! I think it will prompt me always to ask how many of these procedures they've done -- to be sure I'm not the first!
About mattress pads... what's helped me more than our foam mattress, is a therapeutic type pad my hubby picked up at Wal-Mart -- the kind with grooves. It's so comfy and easy on my bones, I actually got one on Amazon for a guest room bed. I highly recommend them. Can find a link if anyone is interested and doesn't know what they are.
Ronnie, I think there actually is some science behind the Budwig diet. I don't believe it will cure cancer, but the main components of it are perfectly healthy as a complementary tx.
LindaE, so sorry to read about your progression and symptoms. Hopefully a new med or regimen will get things under control very quickly.
Hi to everyone else, welcome to the new gals, and hugs to everyone. Like Linda and some others, I read often, but just not posting much. Deanna
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I got the results of my liver biopsy yesterday - no change still ER+/PR+. Plan is to continue Taxol but move up scans instead of waiting 3 months. I finally found the right mix of meds to keep the nausea/vomiting at bay. Been eating and keeping the food down the last few days.
Wishing everyone a good week-end!
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Linda is the Taxol what's making you sick? Or some other meds?
Three more infusions to go then I'm off Taxol did my time for now , now I want a break. Tumour is again almost gone now they are talking Lumpectomy weird they didn't want to do it at diagnosis now I'm still here and their like okay it's still on the table. My bones have been feeling creeky don't know if that's a side effect of Taxol or just the mets doing their thing yuck. I have to stop thinking about it paddling in a couple hours and I don't want to think of my back breaking while doing it.
I wish you all a wonderful weekend.
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So I woke up yesterday and my left arm was red, swollen and hot to the touch. I've had 4-5 bouts of cellulitis and with my leaving in 2 hours for the Hamptons & a liver biopsy on Monday and leaving for Israel on Tuesday I freaked out. While at MSKCC for the study in the AM the nurses looked at my arm and told me to make sure I contacted them if it got worse. I called my ID dr who would not prescribe xyvox since I haven't seen him in 2 years (last bout of cellulitis). I am on 500 mg daily of Keflex prophylactically. I upped my dosage and took a second pill last night and today my arm is almost back to normal. This was a wake up call that I MUST make sure as Kathleen said to bring all my meds "just in case" with me on my Israel trip. I'll see my ID Dr on Monday to get the Rx for the xyvox.
Thanks Kathleen- we all need to make sure we always have any meds that we could need with us.
Babs
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Thanks, Deanna, for the info on Ibrance/Neulasta. Hope you're doing well.
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Wendy - No it's not the Taxol, it's the liver mets and peritoneal carcinomatosis. Do you know what tx you'll be on after Taxol?
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Z- Totality!!!!
Here is a link to some eclipse terms you may want to throw around:
http://www.sciencemag.org/news/2017/08/umbreon-or-...
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Linda no idea what I'll be doing after the Taxol ends depends on my scan results I would think. I'm just tired of what it's doing to my body and I want some hair again. Tired of looking like a cancer poster😔. I'm sorry about your recent progression I hate how we have a language for this .
So they are keeping you on Taxol is it shrinking your tumours since last scan. So hard to know what to do next. I said if I'm still hormone positive than I want an AI possibly ibrance not sure yet
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Way to go Sue!
So, I finally feel good enough to get out, I slept long and hard after the visit to the pool but it was really good to get some fresh air and sunshine. Veyo Pool, Veyo, Utah:
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