Bone Mets Thread
Comments
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Hi Mike3121,
I had Chemo when I was first dx with BC back in 2006. My ONC said chemo would not be an effective treatment since its the same cancer... Perhaps there is another type of chemo they will offer me..
Praying for you and your wife.
Ronnie
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Z, Lita and PhotoGirl,
Thanks for talking me off the edge... I spoke to ONC just now and she referring me over to another RO to get a second opinion. The new tumors are causing pain so dependent on the second opinion I do need treatment for my back and butt:(
Thank you ladies you are all the best.
Ronnie
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Ronnie~sending big hugs and lots of prayers. ~M~
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Ronnie - Sending hugs and prayers! Hope the 2nd opinion helps you with your decisions.
C
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Ronnie - Sending hugs and prayers! Hope the 2nd opinion helps you with your decisions.
C
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hello ladies - thank u so much for your input and tips. I have been on ibrance and letrozole for 13 days now. I am responding well, no SE and good blood counts. MO ,ensured tupmour and is is down slightly too I'm that short time. We r still fighting with insurance about th $10,000.00 annual cap which means I am short 1500.00 dollars for my second script. In addition not sure what to do about the rest of he Year. It won't tale long to go through a lot of savings at 5,700.00 per month.
My MO Suggested yesterday to take letrozole alone (until the provincial govt in Ontario Canada adds ibrance to their formulary which they are hoping will be in the next few months - but who really knows) along with Xgeva. Your input and thoughts would be greatly appreciated. My other thought process is pay until the new year at approx 30k and then my plan will kick in another 10k cap and I will be on ibrance until at least next march 2018. And just maybe the provincial govt will have added it to their formulary by then. Your thoughts and input would be greatly appreciated.
Thank you Cathy
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Hopefulgirl, definitely check with the drug manufacturers about financial assistance. Pfizer covers all but $10 of my out of pocket cost for Ibrance, but then I have insurance that pays the bulk of it. But I know they have assistance available, so check it out, as my mother used to say the worst that can happen is they say no.
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thank u Sybil. But I am in Canada. PfiZer is covering 20 percent and my insurance 10k a year. Other than that it is up to me. Yikes and I want this med as it seems to be eorkin
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Ronnie - please read and re-read Lita's post. Rads to bones are, generally, only used to reduce pain. Palliative care. Ask a lot of questions. Everything about that meeting with the RO is odd.
>Z<
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Ronnie so sorry for the disappointment - i could just imagine how it must have hit you like a ton of brick. I do wanna tell you, that bone mets is not the end at all. First you could have a lot of systemic treatments that might help, re: rads, mostly they radiate the areas that are painful or it's dangerous, like any numbness etc...who read the first scan? a radiologist, if it's so it's worth to hear one more opinion. and re; chemo, there are so many different approaches, it's not if you took it once then you can't take it again, or it won't work -things change and also maybe you would have a biopsy? check if a/t changed? or maybe get some genomics going?
Hopefull it's a hard call. Just terrible how they move so slow when they know it could help a lot of people. Try to call Pfizer and beg.
Also, Dani is off Xgeva altogether now that she is on trial, I gotta ask tomorrow, but it's not the protocol, I sure hope they are not doing any damage.
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Hi Wendy. If you get the urge to take any jumps with that bike, wear body armor. Just my words of wisdom of the day ... and please no one make me laugh for another week.
>Z<
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Z what did you do?
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Anita. Loved the Hopi picture!!! It definitely made me smile!
Ronnie I'm glad you're going for a second opinion. Bring your list of questions with you!
Wendy glad to hear you're biking
My exercise of choice has been walking but I can't do that now. I'm waiting on results for a left knee MRI. My orthopedist thinks I have a torn meniscus. It's always something!!!!! I too have been off xegeva for a few months due to some dental work I need to find out when I'm going back on it
Also waiting to find out how I do chemo while in Paris when my DD gives birth. Seeing my MO tomorrow so should have answers then!!!
Babs
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Z, I do have pain in the new areas, I thought it was from working in the garden so much. I was trying not to blame every ache and pain on cancer.... I have an appointment with another RO next week for a second opinion...
Hope everyone is feeling good!
Ronnie
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Ronnie - glad you're going for second option. Like Lita says, rads should be used for severe pain or if lesions can cause damage to surrounding area. Out of curiosity, may I ask if a CT scan was done to correlate images? Bone scans can be misleading and I have always been told by my medical team, including ortho doc, that tx plan should always be reviewed with other imaging. I would not feel comfortable moving on with only a bone scan as a reference. My two cents worth.
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Mom - Fell off my bike. Finally got medical care today, 5 days later. Doing much much better.
>Z<
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Z-OMG you should be more careful!!!!!!!!
Well the results are in and I do have a meniscus tear in my left knee. Will take a cortisone shot just before we go to Israel and deal with having sx when we return! Never a dull moment!!!
Tomorrow I get my TM's taken so I'll know if the Halaven is working or not-UGH!!!!!
Babs
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Zar you were on your own? What kind of treatment you got? You broke something? I can't even imagine. Are you able to walk around? WOWOWOOWOW
Babs my sister had that. Yes, cortisone shot was her choice. She needed to do it twice. But it has finally lasted. Good luck.
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Good Morning,
Babs, sounds like this is the last thing you need right now!! I hope the cortisone keeps the pain at bay.
"Z". Hope your feeling better. I am not sure what you did but get well soon. My husband is always telling me to be careful. Don't need any broken bones!
Ronnie, I have to agree with LindaE54. Were there any other scans done? My husband is a Radiologist and when he first discovered this with me on X-ray, he immediately had a bone scan ordered. Two days later I had a Pet Scan. I meet with our local oncologist and he then ordered MRI of the brain, pelvis, and lumbar, and thoracic spine. Then they compared all of the images to make sure that the spinal canal was not invaded. I think that were ruling everything out so they knew what treatment to start. Then as I said before my local oncologist insisted I go to Dana Farber for a second opinion and all the scans were read there as well. Even a CT scan with and without was done. I felt like for a few weeks I was under every machine in the hospital. I had so much pain everywhere and at the time had a broken hip. My MO said once I started treatment all the pain would go away. My husband kept asking about Radiation but both my MOs said no the pain will get better with medication and they were right on. Keep us posted on your progress. Just giving you my experience since I was traumatized and cried for months.
Hugs to all,
Anita
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Omg Z that sucks but you are a rock star getting out there on your bike. I'm not brave enough for mountain biking anymore I'm doing the granny biking around a nice paved bike path lol. Please be careful and I hope your feeling better already. I suggested to my sister yesterday after doing that "ride over Canada thing" it's like that ride at Disney land flying over California where they simulate flying. I wanna go hang gliding. Tandem would be okay to lol. I guess I'm working through a bucket list after all.
Babs I have had two knee surgeries a few years ago because of torn meniscus both knees. Needless to say when the weather turns or when I do too much I'm in big pain. I have to tell you I started incorporating fresh turmeric into my diet in smoothies and golden milk and my pain is almost totally gone. Took about four weeks to start working maybe that would help. I'm able to get up after sitting in a restaurant for a bit like a normal person lol . Good luck and I hope your new treatment kicks butt.
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Hello everybody, I am still here!!! I haven't had much time to post or even read lately. We have a house full!!! So much love,under one roof! I have my oldest dd,sil,two grandsons,my Mom,three teenage girls and of course dh and myself. We go through a ton of groceries. Always something cooking,something in the washing machine...... never a dull moment!
It is so sad to see so many young wonderful ladies newly dx. But I am here to give you some hope!
I was dx in sept 2015 with tumors in both breasts,ill and idc. Extensive bonemets everywhere. The pain is in my hips,no where else. I was told no chemo,no surgery I was stage IV de novo. I was put on tamoxifen. I was a little confused at their decision as well. Since dx. I have been stable,no progression at all. I take tamoxifen and cbd/thc. As scary as the dx is,you will find peace in time! I promise!!!
Dh is slowly healing. The traumatic brain injury is very slow to heal!!! He has healed enough to start the surgeries. He will be undergoing an extensive shoulder surgery on the fourth of August. We are hoping he can go back to work on light duty,before the end of the year. So many police officers are getting killed!!! We count ourselves as lucky!!!
I wish I could address everyone as well as mom does. But my brain just won't do it!!! Know that I love all of you !!!
Annie-where are you?
Dee-are you there?
Babs- you are amazing to me!!!! Praying for some good tm's!!! Can't wait to see that baby in December!!! All of my babies were born in december. 10th,14th,28th. Plus our anniversary is on the fourth!!! What a broke month!!!
Z- I'm going to reiterate what your Dh says.... be careful!!!
Anita- great photos! National geo hasn't found you yet????
Lita- you light up my life with that smile!
LindaE- so glad that things are turning around!!!
Deanna- how's the xeloda? Do you have hfs? That just sounds so terrible!!!
Wendy- 🏇🏼🚵♀️🚣♀️You are so cool!!! There are no words!!!!
I have had quite a struggle since moving into our house! First the accident which took place on March 10th. Exactly two weeks after we moved in. Dh was physically unable to help with anything! So, of course I over did myself and got it done! By May,I was so drained,emotionally,physically,financially. The stress just got me down!! I landed myself in the hospital. Uncontrollable v and d. They did the brain MRI and didn't find any mets. What they did find is epilepsy.....I haven't had any seizures. I have had one bacterial infection after the next! Colitis in both hands,gooey eyes ect.... I now have a uti and am on ciproflaxin. Gosh I hope this is the end of it!!!! Special prayers going out to everyone suffering a scan showing progression! And all newly dx. I pray that you will soon be able to eat and sleep again! Live everyday to its fullest!!!!
I have posted this meme before, it just suits me to a T.
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Chelle - I am so glad to see your post! It sounds like you are surrounded with love and that is wonderful! Glad to hear dh is making progress! Whew! Sounds like you have been going through a lot! Love your meme, it's a keeper! You and your dh have been in my thoughts and prayers, where you will continue to be. Enjoy your family and try to keep in touch, we worry!
Love, hugs and prayers
C
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Chelle - I am so glad to see your post! It sounds like you are surrounded with love and that is wonderful! Glad to hear dh is making progress! Whew! Sounds like you have been going through a lot! Love your meme, it's a keeper! You and your dh have been in my thoughts and prayers, where you will continue to be. Enjoy your family and try to keep in touch, we worry!
Love, hugs and prayers
C
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Big, thank you so much for your thoughtfulness and genuine concern. Gosh you ladies are the best!!!! I can't remember your first name. Is it Cindy?!?! Ugh. My brain is so mushy!!!!
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Claudia!
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Wendy, tumeric is great. I use it myself, but only on my off cycle weeks, and can feel the difference in my pain level.
Tumeric, like green tea, competes with the same pathways and receptors that chemo uses from what I've heard. Tumeric and green tea help fight inflammation and oxidation. They are anti-oxidents. When fighting cancer, you WANT to inflame and oxidize the cancer cells to help kill them. So they say don't take either of them when you're in the active phase of your chemo (the week of your infusion or the week you take pills).
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Hi Lita,
If inflammation and oxidation are desired during chemo, should we eat bad food,such as the ones that contain hormone and stimulate cancer growth? I'm just thinking out loud...
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Chelle, sweetie, so nice to hear from you. What a rough ride. We will keep you in our thoughts for the surgery. How is his mood? What's going on that everyone is at your house. Summer? Love, love this meme, the story of life in a nutshell. It's the only way, that's for sure.
Lita great advice about Tumeric, thanks a lot.
Babs, can't wait to hear from you.
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Chelle, I'm here, so nice to hear from you! Glad dh is healing and I'm sending all my positive energy for a successful surgery and speedy recovery on August 4th. So what do you think is causing the bacterial infections? I feel for you with the UTI, I had one once for 6 months straight, yep it wasn't fun. And then I got sick from all of the antibiotics I was on! Nice to hear you have a full house, I love it when everyone is here under one roof, the more the merrier.
Hugs, Annie
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Kidman, too funny! Yeah, maybe we should drink and smoke cigarettes while we're on chemo, too 😉.
I've been on Xeloda for over a year. One thing I did notice...before, when I used to drink green tea and tumeric tea during a chemo cycle, my SEs, especially hand foot, weren't as bad. I wonder what that means? I think perhaps the tumeric and green tea blocked some of the chemo action from my Xeloda pills. The last couple of cycles, I didn't have green tea or tumeric, and hfs and other SEs were worse, possibly because more chemo was interacting with my system. So maybe what they say about not taking those 2 things with the medication is true.
I make sure to drink plenty of tea and take tumeric on the off weeks to help repair the good, non-cancerous cells that have been injured during the on-cycle process. Everybody's gotta do what they gotta do to fight this beast.
Predictably, my energy's a little more up and my stomach feels better because it's day 4 of my off week cycle. I know some of you experience the same: we feel the crappiest the first few days of our off cycle weeks as our bodies are dealing with the toxic chemo load and trying to clear it. I'm having blood work tomorrow to see if I can start my next cycle because my RBCs are at an all time low, and I came within a hair's breath of totally passing out yesterday. Yep, chemo's fun.
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