Bone Mets Thread
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Thanks Dee! Some on this thread I have conversed with already and some of you are new to me, so hello. I am not a nut but if anything will make you seem crazy it's cancer, at least in my opinion. It is been a feeling of walking on thin ice where before I was skating on very solid ice indeed.AnnieOakley, Thank you for sharing that story with me, I think there may be more people having success with Protocel then I have seen post on the internet. http://yourvitamindepot.bizhosting.com/customer_comments.html I just found the pricing for shipping to Canada and it is very expensive, too expensive in my opinion...I wonder if there is another distributor that will ship to Canada for less, maybe http://www.webnd.com/shipping-cost-details.php (just found this one, I know nothing about them but the shipping prices are much better.)
I have faith in this right now but I am still hoping for a cure from conventional medicine, I am praying anti-cd47 works the way that they hope it will. You can search for threads on anti-cd47 if you are curious and on the internet too.
I keep praying and praying and that may be helping me also.
Enjoy your weekend everyone!
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Well I went to Ortho doc today...my hip is ok for now....have alot of inflammation from radiation that was done on my hip...spinal cord...and brain stem bone....doc said that is what is causing most of my pain and discomfort in my lower back/hips/and legs...see him in 3 mths...thank God no surgery....but have to be extremely careful of falls...for fractures in hip area...
Thanks to all...that have been responding to my comments...my memory is not to hot...so remembering all who have addressed me... is alittle hard for me...I hope you all understand!!
Raining here in Idaho...I hope I have a pleasant weekend...and I hope all of you sister's do to...Love to All ~~~ Carla
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Annie, Glad that your radiation Txs are over and that the rumble that you hear is mass exodus of the ca cells. My ct of chest/abd showed stability with no new activity....yay.....and Echo of heart showed ejection fraction maintaining stable...so I can "stay the course " with Herceptin and Faslodex plus Xgeva. Hope all have a more restful weekend.......don't remember who it was that experienced a major uh-oh with onc who almost made a med mistake...big stuff....the drug protocol with oncology is usually checks x3 before the pt line is accessed (pharmacy, RNs x2 or doc). In reality it almost always includes us.......:) Here's to "stable" !
Peg
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Thank you for all the good thoughts! I started Xeloda yesterday. I think I have chemo PTSD. I had a mini meltdown when it arrived, and another one when it came time to take my first dose. I've been under the covers all day, a bit depressed, I think. No awful side effects yet, just down. I need to snap out of it. I just hate chemo and i think I'm so afraid of it making me feel bad.
I'm going to try not to focus on it tomorrow. I hope everyone hear has a nice weekend
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Good luck with the Xeloda Ramansma. I had a fair bit of hand and foot syndrome with it. But to keep me stable for 2 1/2 years was worth it. Hope your body is tolerating it. I know I felt the same way when I started it because it had the word chemo attached to it. But a lot easier to take then having to go in for actual chemo infusions like I am doing now.0 -
Thank you Saskie. I know it could be way worse. I've been there a couple of times. It's why I went this route. But, it's my mind. I guess I'm mourning the idea that I was going to do well on non chemo treatments for a long time. It's a path I didn't want to be on right now. But, I am. So, I will try to suck it up. Today I'm going to get up, get dressed, maybe even some makeup, and go do something to take my mind off off it.
How are your infusions going? Hopefully, kicking cancer's butt!
Patty, how are you feeling today? Hopefully, hubs is bringing you breakfast in bed right about now!
K. I'm up. Time to go enjoy my weekend
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Annie, you raise an excellent point about being totally cognisant when it comes to the drugs we're taking! My MIL, who is a retired RN, has more than once stopped medical personnel from giving her the wrong drug or dose, and in at least one instance it was something that could have caused a fatal interaction with whatever else she was on at the time. Thank goodness you caught it, but it's pretty shocking that it was your onc who made the error! But on the positive side, I am so happy that you're done with your radiation, and the drop in your TMs is very exciting!!!
Now that I'm back on my computer, I'll have to really read up on Protocel23. In the mean time, did you all see this fascinating (and hopefully very promising!) bit of research news? http://medicalxpress.com/news/2014-12-san-antonio-...
We were just in LV for the NFR (rodeo), something we've done w/some of my DH's family for the past 20+ years. Last year at this time, I was very thin and looked pretty bad, with extensive, un-dx'd bone mets. (I got really sick and was dx'd shortly after we got back last year.) This year I am doing much better physically, but still have to pace myself because after going for 3 or 4 hrs., I hit a wall and need to stop and put my feet up. But what was so strange is what I call the elephant in the room. No one said a thing to me about my health or tx, although they did ask my DH one night when I wasn't around, and he told them I'm doing well. But it just felt like there was a subdued pall over everything -- the elephant in the room that no one wanted to acknowledge. It was really weird -- like no one was suppose to laugh too much or have too much fun now because of that elephant.
Romansma, I am praying that Xeloda is exactly what your body needs to kick into fight mode! Sending you a ton of positive thoughts and prayers that it will start to work very fast, with minimal to no SEs!
GDG, welcome! I'm sorry about your re-dx, but glad you joined us!
I hope everyone has a good weekend! Hugs to all, Deanna
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Romansma,
Sorry you are back on chemo. I know we like to stay away from it as long as we can. I read on one of the threads under inspire about coconut oil being very good for the feet on Xeloda. I hope your spirits pick up.
I have a PET scan on Tues after a year on AA. I've had 3 scans this year with progression, I guess if I still have progression my doc will take me off of it. Last week, I felt like I fractured my left ribs. Waiting to get the PET to see if anything shows up.
Terri
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Romansma, I have a friend who was on Xeloda for awhile and then back on hormonal therapy and I hope that is the case for you. There are bunch of things that you can use if you do experience the hand-foot syndrome but I do hope that you have wonderful results with it and that you don't experience se's at all.
Deanna, I am so glad that you took a trip to LV. It sounds like your husband's family is concerned about you and they don't know quite what to say.
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IBC - good luck with the scan. Keep us posted.
Annie - congrats! You made it! Glad you were heads up on the meds - that's not an insignificant error!
Romansma - hope you are doing ok. I went to counselling years ago after my divorce, and the counselor talked about "mourning the loss of expectations" - you expect things and then when it doesn't come to fruition, it's sad. The counselor said to acknowledge that it is a mourning process and a loss. So I'm not surprised that you're depressed. Sending you virtual hugs.
Glad for no surgery, Freebird!
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good morning ladies.
So inevidibly I too caught the virus going around the house. Sorry can't remember if I posted that. Dh took us all to the dr fri. Both ds's were up playing yesterday like nothing ever happened. I slept most all day. Not feeling too bad just crazy fever spikes now 103+, which puts me straight to sleep no matter where I am at : couch, potty , standing up ect. But on the good news front I am still not having excruciating back pain ! Hooray for adding gabapatin to the morphine er and diladid. I do still have stiffness but from where I have been, I'll take it. 1 more week of school before the kids are out. Happy and sad I feel everyday I spend time with them is a present for all of out family, but not sure how that will work since I spend most afternoons napping to be up and ready when they get home. Hoping and praying dh takes some extra time off to help out when they are home.
Freebird - no surgery for you. Yea ! Take it easy. No fractures this close to the holiday.
MusicLover - I have read enough of your post and pm's to know you are not nutty. Nothing wrong with trying something new as long as mo says it doesn't interfere with his tx for you. Keep us posted on how it's working. Even if it turns out to be a placebo affect - so what it is helping now right ? If it turns out it made a huge difference it may help all of us.
Deanna - so glad you got to go to lv for your dh families get together. Glad you are looking and feeling better than last year. Sorry they made you feel like the big C was the elephant in the room. So many people don't want to pry and really don't know what to say. I not sure if I like that more or less than those family/friends who only talks to us about it. Got to be a happy medium somewhere.
Inc/Terri - hoping your next scans show a decrease and no fractured ribs !
Romansma - hope you slept great last night and the shots are still helping. Hoping no se from xeloda. Does medicare part b pay for this ? I was talking to medicare a few weeks ago and they said any med taken orally or injected that used to be in chemo form only is covered under part b medicare. I had no idea. I checked with mos office and they agreed. Wish they would have told me sooner sure would have saved many sleepless nights. Praying this is the most effective tx for you with the few sets side effects. And no my dh has not been bringing me breakfast in bed. He is scared to get close to us. Since he is the bread winner , the mr positive , the one who goes to most school functions for ds's ( Christmas parties and plays all next week ) grocery shopper, Christmas shopper, house cleaner , laundry man and cook so often I am not sure how we would function if he went down.
Ann - so you are done with radiation ? Sweet! Hooray. !!
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oh yeah peg - STABLE ! Sweet. Keep on keeping on girl.
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Wow, Patty, your DH sounds amazing. You might let him know if he adds breakfast in bed, he might be nominated for DH of the year! By the way, got home from a Christmas party about 10 last night and found a card from Santa Claus with a most generous gift inside. Those elves! I must have been a very good girl! How did Santa know I needed cheering up?
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you must have been a good girl indeed. Wonderful. Glad you felt up to partying. Yea ! Yes dh might win hubby of the year. Surely love him.
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Gotta run. Cookie making today. Have to read through more later, but congrats to Annie!
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Annie, woohoo on finishing rads! Good luck on the scan, Terri!
Regarding rib pain, I used to have those as well and nobody would tell me why they hurt. Then I realized ribs have a lot of joints and rib pain could be because of arthritic joints, just like my swollen, arthritic hands are giving me trouble now and in the past, the wrists, elbows and knees. Thanks to AIs. I am looking forward to being back on Tamoxifen in January.
Romansma, lucky you!
PattyP, hope you feel better soon. I had a flu and a hacking cough for weeks, and am still coughing when something gets caught in my lungs or throat. I was just amazed though that neither DD nor DH caught it. Knock on wood.
Musiclover, I did read about Protocel when it was a hot topic here on bco. I seem to recall that the NCI did investigate its various forms (Cancell, Cantron, Eleve(?)) and found that not enough could be detected in blood plasma to have any impact. Which could mean that if someone were a very good metabolizer, it might have an impact one way or the other. I hope you only get good things out of it, placebo or not.
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Romansma:...My daughter lives very close to you..she is in the Navy at Port Hueneme had has my 3rd grandson....I used to live in Simi valley and Huntingbeach area...then Bakersfield until I moved to Idaho..to be closer to my 2 other grandson's...left alot in Bakersfield....my first house of 2 yrs...job of 8 yrs...but my youngest daughter what me to be close to her ..her hubby got a transfer here and his family is all here...but now I regret it so...cuz now that I got DX in April...I barely see the two of them....I have to go to there house just to see the grandkids...so sad...but it is what it is...I am just focusing on my care and life right now...I want to live to see my grandboys become young men...
Today a day of watching my favorite sport ...the Packers play football...and then tomorrow...I have a interview for a part time job...Now that I'm not getting chemo weekly...OC...said ok on getting a PT job...I need it for my sanity....to be around people...I just don't have that right now...So I figure working in a convenience store/gas station...will fill my need of socialization...at this point...that is my MO...People person...So...That's what I'm going to do...for me...because...there is NO body but you ladies that I communicate with...I am thankful to you all...Have a great day!!! Carla
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Carla, good luck with your job interview. I hope it goes well and you like the job.
Does anyone else here have a problem with pharmacies being sold out of oxycodone? I was so furious today -- and still am. I have the scripts, but they won't take it and put it on file. They won't tell me when they will be getting a shipment. They won't tell me how long they typically have it in stock. I'm trying to work with them here, but they are giving me nothing to work with. My other option is to drive an hour to the other side of town and get it from the pharmacy at the hospital, and when I switch doctors I won't even have that option. There must be a way for people who will be using this stuff long-term to be able to have access to it. Any hints here?
I have to try to calm down now. I'm in a boat load of pain but dare not take anything for fear of running out.
Have a good night.
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Dune, that's horrible! Is this a mainstream drugstore? I'm really shocked at their callous attitude towards a need for a pain med they can't fulfill. I also don't understand why your options are limited to just 2 stores. Is it because of your specific insurance coverage? Wow, I sure hope someone here can help. A health care provider should not be adding to our stress!
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Yes, these are mainstream drugstores. I tried a lot of different places the first time I was given this prescription back in August I think. Walgreen's had it, but they didn't take my insurance.
The girl at Rite Aid told me "A lot of people are in pain." OK. That was good customer service. I realize a lot of people need pain control. That's all the more reason to make this available.
They both claimed that this is policy. I know a lot of it comes from government policies controlling these drugs. This is bs though. I look forward to the responses I get from the complaint departments of these pharmacies. If they don't have it by Thursday, I will drive over to Franklin Square and get it, just for the satisfaction of preventing them from getting the money from my purchase.
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Dune, Your Doc can fax in an order with veriication that is needed...as to dose and timing of pain med. Hope that you can get the needed help soon. Pe
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Geeze Dune..as if you (and we) don't have enough to deal with. I tried to get my prescription for my arthritis med filled locally. The doc gave me a form that said the pharmacy gets charged $36.85 and the patient charge is $71 (per month). It's not a funded drug. Anyway, they tried to charge me $195! Then they dropped to $125, then to $95, which was "as low as we can go." Went to another pharmacy (half hour drive) and got it for $70. Insane..one wouldn't think one would need to barter with the pharmacy!
So, now I'm going to rant a bit...nothing to do with cancer. Just need to rant a bit. So feel free to stop reading now!
I have some huge deadlines at work and very demanding clients. They want everything before Christmas, so it can sit on their desk while they take a month off. Anyway, my time is precious. I still don't have the tree up; it probably just won't go up this year. So, just in case my time wasn't limited enough, husband gets a notice on Friday morning that his surgery is scheduled for Monday (today). So, off to Palmerston North we go. Normally a one hour trip; today, 90 minutes due to road construction. Lucky for us, we left early. Get to the hospital and sit for an hour. They call him in, and he's gone for an hour. Then he comes out and says "all done!". They decided the risk was too high compared to potential benefits and for the third time, cancelled his surgery. Coming home, it was like something out of a Naked Gun movie - road construction, tractors doing 20 km/hr, big overloaded trucks doing 60 km/hr, people pulling out in front of me then slowing way down, doing U turns, etc. Get back to Otaki (where we live) and there are three crosswalks through the village. All three have like 300 year old people with zimmer frames (walkers) and canes...and are crossing in verrryyy slllooowwww motion. Get close to home and...more road construction! Took almost two hours to get home.
Got home to 28 emails, all with clients wanting 'just a few minor changes' by tomorrow. And none of them simple changes. Just one thing after another from the job front.
So, if that wasn't enough drama for my day...The cats brought in a tiny baby pheasant this evening. I am supposed to be working on a report; however, the baby pheasant decided to jump out of the cat cage I had him in and from the top of the washer to the floor. Where I found him, freezing cold and barely able to stand up. I warmed him up, got some water into him (actually, "he" could be a girl..have no clue). Put him in a big box, still in the laundry room (away from cats) turned on the dryer and he's much perkier. Hope he survives until morning, when I'll drop him at the vet's office. If the vet thinks he's viable, a local animal rescue group will take him and hand raise him. Such responsibility! I feel really bad for the little critter and I'll be heartbroken if he doesn't survive the night. And I have to be up at 4 am to drop him off (being optimistic here), get to the train by 6 am so I can make our Christmas party breakfast across town from the train station. The boss suggested a bus, I'm thinking taxi.
The good news is that next week is Christmas and I am off until January 13. I'm on call, but basically off work from the 23rd onward. And I may take the 22nd and 23rd off too.
Hope everyone is doing well...thanks for letting me rant (like you had a choice!).
Hugs to all,
Terre
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Oh Terre, I'm so sorry. You are stronger than me. I'd be in bed refusing to deal with anything. I hate the feeling of overwhelm and totally cannot deal effectively with it, as evidenced by the mess in my bedroom and office areas.
They have such strict rules regarding stage 2 controlled substances here now. I'm not sure when you left. They can't be faxed. You have to have id. You even have to have id for cold and sinus meds. I'll probably drive to Franklin Square to get this filled, but I'll have to find a way to work with the system in the future. I'm looking forward to the emails or calls I get in response to my emails. I'll get to growl for a while. Not vent ..... growl! Roar! I'll roar for the sake of us all.
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dune sleeper,
Every time I read about someone, who truly needs the pain relief having a hard time obtaining it, my blood boils. There has got to be a better way to deal with the rampant abuse of pain meds without impacting those who truly need it. Hope you get relief soon.
Terre,
You do have your hands full! I hope the weekend was restful.
Just to clarify for sisters outside the US, not not all cold/sinus meds need to be signed for with ID. Meds containing pseudoephedrine , like the original formulation of Sudafed, don't require a prescription but must be purchased at the pharmacy counter (no longer on the shelves). You must show your drivers license, sign for it and cannot purchase more than a certain amount in a 30 day period. Apparently, it's used for cooking meth. If you do need an amount that exceeds the 30 day limit, your doc can write you a prescription. I have chronic sinus problems and curse the meth heads every time I have to go through this hassle. Yes, minor compared to the pain relief situation but a hassle all the same. Acetone, nail polish remover, is also used for cooking meth and at one time they were considering similar restrictions!
PS: I know this is trivial compared to chronic pain. Just had to unload my frustration.
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Dunesleeper, Getting pain meds can be a pain in the rear. The pharmacy can not give out the info a to when the meds will be in stock they are just following the rules set by the gov't. In my area the prescription can not be faxed or sent electronically, one has to go tot he pharmacy with the prescription in hand. The prescription is only valid for 48 hours, if you wait longer you have to get the dr to write another one. The good thing about my area is if the closest pharmacy does not have the med in stock they will call a nearby one for me to see if they have it in stock. What is difficult for me was finding a dr I could work with to manage the pain My oncologist does not prescribe pain meds I have to see a pain management dr. Just recently found a dr I can work with, It was a little awkward telling him what I wanted/needed his medical assistant was making notes on the chart and was trying to word it gently rather than noting end of life care we decided to use the phrase palliative care. I did let them make copies of some of the reports of my condition, so that they would know that I'm not looking to get high, just want to be able to function, It is so sad that pain meds are abused by so many that it makes things more difficult for us who need them. Almost everyday there is a story in the local paper about the drug epidemic in affluent white areas. Here is to a pain free 2015 for all of us.
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Wow, I had no idea that getting oxycodone was such a hassle or cold medication??!! Also learned that you can only get your meds at a certain drug store. And some folks think our Canadian system is crazy!!
I'm on my way out the door for a CT scan & turmor markers, I need all your good thoughts. I would have thought I would be stable at this point, not even thinking about NEP. All I want for Christmas is stable.... Kind thoughts for all here, especially those in pain. -Dee
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Terre, it sounds like the universe it trying to tell you to slow down! I think at some point, you have to tell your clients, "I am totally booked up until January 13," to guard your own health and well-being. That is, unless you truly thrive on last-minute deadlines, as some people do. And I hope whatever surgery your DH isn't getting turns out to be the right decision for his situation.
I am headed to my onc's office shortly for blood work. Will get results at my Wednesday appt w/him. So far, I've been able to postpone 2x my next CT scan due to falling TMs, and I'm obviously hoping that downward trend continues. But I'm also torn between not wanting a CT unless I absolutely have to have it -- because I do wonder if all that radiation isn't at least somewhat harmful in the long run -- and wanting to get one in in 2014 because it will be no cost at this point, vs. starting all over with deductibles and out-of-pockets in January. In addition to not being able to get pain meds, like Dune's been going through this week, I think medical bills are one of the biggest stressors about bc. I don't know how much those of you in NZ or the UK have to pay, but here it's literally thousands of dollars each year, even with excellent health insurance coverage.
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Deanna,
I hear you on not wanting over exposure to radiation. My mo feels that way too and that's why I get scans every six months, instead of every three as I did initially. She felt that since I will probably be around got a while, no need to have radiation exposure unless needed. I have no deductible, BTW, but I understand why this would be a consideration. I am one of the lucky ones who does not pay much money out of pocket.
Caryn
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Ugh! 3 sticks (including 2 butterfly needles and 1 blown vein) by 3 different lab techs, and they still couldn't get it. So now I have to go back later this afternoon when the lab supervisor will be in. I know it's nothing compared to those of you dealing with RT and other much more invasive procedures, but it just has a way of cutting right through the denial I think I live in most of the time, and reminds me that I'm sick and have to do these stupid blood draws.
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Hello everyone,
Terre, I feel your stress and can't understand how you are doing it. You need to slow down a little, it sounds like you're overworked. Please take time for yourself and don't let anyone push you too hard. I hope things work out for you and praying for all to be well for you and your DH.
Dunesleeper, sorry to hear of your problem trying to get your pain meds, that must be infuriating. At my pharmacy if you have an rx for a certain med and it's ongoing they always make sure to have it in stock. It's not right for them to make you wait. Let us know how you made out.
Dee, hoping for great results for you! Stable and lower tumor markers would be awesome. Sending positive thoughts your way.
Deanna, I hope you fared better with your blood draws when you returned. Thinking of you and sending you hugs. I was saying on Friday when I had my infusion that I'm so tired of being poked and prodded. It does remind me that I'm not well.
PattyPepper, hoping you and the family are recovering from that virus and feeling much better.
Terri, thinking of you and your scans tomorrow. Positive energy being sent your way. Best of luck to you!
Romansma, how are you feeling after a few days of Xeloda? Praying for you to have minimal se's or none at all!
I'm hoping I didn't miss anyone. Feeling sluggish after the 2 weeks of radiation and with Christmas being next week I feel stressed but don't even have the energy to push myself.
Hugs to all, Annie
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