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Told 4-8 months left if lucky/looking for hope

Dad'sfight
Posts: 155
Joined: Feb 2013

I'm taking dad to Mayo for second opinion. Current oncologist said dad had 4-8 months without chemo, and 12 months with chemo. I just have a very hard time believing this.  The spots are on R. Hip and a very very small spot on lower spine. They are only radiating hip because Rad. Onco. thinks chemo will rid of the spine spot. I'm searching for current fighters of bone mets, how long, what tx have you been doing. I want to have a really good list of questions to ask and maybe suggestions about meds from others experiences. Thanks so much.  KEEP THE FIGHT!!

NikiMo's picture
NikiMo
Posts: 344
Joined: Jul 2011

Hi,

Go to this facebook page tell your dads story and ask for Susan Burrows.  Her husband had mets to hip after surgery, I believe it is either now gone or greatly reduced.

 

https://www.facebook.com/groups/6744305812/

 

Niki

Dad'sfight
Posts: 155
Joined: Feb 2013

THANK YOU THANK YOU THANK YOU!!!  I'm so desperate to find anyone and any information. 

Zoe1
Posts: 26
Joined: Dec 2011

My dad is still battling with EC since Dec '11, he has bone mets to his pelvis area (tumor and lymph nodes swollen). We are still fighting,he had chemo/radiation no surgery...then he was on xeloda and carboplatin for bone mets ,recently Zometa for the bone mets but just after he had herpes/shingles (we dont know if it's due to zometa or not but zometa might have triggered it) he went down hill from there ....now he has to take morphine every 4 hours ....it's heart breaking but I am not losing hope yet by the grace of God. He is getting a bit better now and hope it continues by the grace of God. The shingles was very painfull and he already had nerve damage from earlier chemo now more nerve problem due the shingles. He is having severe stomach and back pain that's why he had to take morphine (not really sure if it's due to shingles or the cancer)

Taking many supplements and lots of prayers. Will start him on cannabis oil soon (we are growing some too but it's too less even for juicing).. as soon as I get the shipment. We might even go for chemo again (if cannabis oil fails or if my dad insist)

Do ask your onco about zometa/xgeva for bone mets.

Stay strong and be positive.. your dad will need that.

 

God bless

Zoe

Dad'sfight
Posts: 155
Joined: Feb 2013

I just was told by a friend to do the oil also. I have no idea how to get it or make it so I have to figure that out. I'm sorry to hear about all the pain your dad's in, that makes it hard for us care takers. I hate to see my father in pain, but they have yet to find something to help with this hip pain. The onc. telling him 4-8 months has been the bigger set back. I'm so pissed that he has done that.  He should have waited until chemo, scan, and results. Then if it didn't help break the news then. He has wiped out any of the fight he had left in him. Now I just post everywhere hoping people will respond with their stories so that I can print it and take it to dad to read. So thank you, I'll be taking it home today ;). I hope your Dad bounces back really soon.

goty2001
Posts: 71
Joined: Jul 2012

I got exactly the same timeline 13 months ago ... and while I'm only 1 month  into borrowed time, I'm fitter than ever, working, vacationing with family, golfing etc. Don't start a countdown.  I tend to be careful what I take on board from here on my infrequent visits - it's not always conducive to positive thinking...

a.oakley
Posts: 32
Joined: Oct 2012

My husband has kidney cancer and mets to bone.  I have no idea if the mets to bone is a different treatment for esophageal cancer.  My husband was diagnosed 1 year and 7 months ago.  He is doing very well.  His mets were in spine, hips, femur, rib.  He is taking targeted therapy for kidney cancer and demosamub injections monthly to protect his bones.  He has had no new growth all this time.  He did have cyberknife treatment 2 times to his spine.  Also had radiation treatment to his hip for pain management.  He does have some pain that is managed with medicine.  He's walking around and still goes to work part time, because he loves it.  Life has changed but he is doing very well.  I think there is hope. 

Dad'sfight
Posts: 155
Joined: Feb 2013

@Goty.. that's fantastic!!! I agree with you about not concentrating on time, it's just so difficult not too, especially for my father. I have anxiety trying to figure out how, when, we can do all these things he's always wanted to. I know that I'm so ready for Mayo's opinion, then I will be more capable of making rational decisions. Wish you the best, keep up the fight ;).

 

@a.oakley... I think EC is much worse than Kidney, the types of cells are more aggresive. (I think?). Regardless, I'm still holding on to your story as hope. I appreciate you sharing the treatment, I'm writing everything down and asking. I will go down the list the day of the appointment. I know that these doctors can't stay on the cutting edge of everything, so I'm wanting to be proactive and find as much as I can. I'm so glad your husband is doing well, warms my heart :).  What type of pain meds is he on? I ask because they have my dad on Fentanyl 75mg, Oxycontin 20mg, Vicodin 500mg and it doesn't keep him out of pain. I know the 2 pain meds are suppose to be longer lasting, 8hours, but they only last 6. Then the vicodin is for break-through and works for about 2 hours. His hip is broke, not repairable because of the cancer so We told the current onco. and he said that his hands are tied, go to pain managament. Like we have more time to take off from work for additional appointments. I guess he should ride along with us one day to see what it's like getting him in and out of cars with a broken hip and then maybe he would be more willing to help with meds.  I'm hoping Mayo will be able to help ;)

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