Bone Mets Thread

Yes, @joyneri

I start radiation next week, chemo soon and I have an appointment with a nutritionist. Physical therapy was not recommenced at this time, understandably. I may have to start using a transportation service, Driving is getting to be a little difficult. I have a great team working with me through my Oncologist. Emotionally I'm ok. It's my family that may need some help with coping with it. exspeacially my Mom. I'll make sure to read some of the earlier posts for insight.

Thanks You

Wieg, I only had diarrhea after the second infusion. My bone pain had been pretty constant for several months, given my tumor load, so I really can't comment on that since I was in constant pain all the time.

If your pain is new, or doesn't let up, I would tell your MO.

Overjoyed did you do an MRI, maybe it's pressing on a nerve, and that's why you have so much pain? You should know what you dealing with.

Marie the rads could for sure help you. Sometimes it does take a bit of time.

Dani gets Xgeva - and it's pretty mild, how is that chosen, Zometa as oppose to Xgeva?

What do you guys think? Dani got a gift certificate for a day spa, she would get a massage, but T1 is definitely an issue, and the whole spine, ribs the works all is full osseous lesions, would it be safe for her to get a massage? I am not comfortable with it,i could ask Onco but I wanted to hear what your opinion is. Thanks.

@Lindalou,

Not sure if I'm up for that one yet. I'm a chicken.

From my Pet scan it says:

cervical: intense uptake

thoracic moderate uptake

lumbar intense uptake

sacral mlld

Just so surprised how fast it is growing. I just had one in January and it didn't show anything.

lita57

Thank you

Paula.

my concern is bone breakage. Not a foolish question at all!

@momallthetime

I've had MRI CT's and PET scan and yes it is pressing on some nerves.

Hey overjoyed you kidding that stuff hurts. Nerve pain is nerve pain. Maybe rads would help in your case, to diminish the feeling.

Yes ladies, i think it's a great question. To be honest, i'd say both, she has loads of bone lesions, so yeah i heard things about activating the cells and or doing damage to already compromised bones, and Kaption her mandibular is not doing well at all. So not a facial massage either. She could skip it, it's just one more thing that she has to be aware of, it's this constant reminder that we hate.

Milaandra, this answer will not be very helpful. I have continued to work full-time at 71 (as a very active Realtor) but am in the process of winding down, entirely by choice. I have no small children or teenagers and thus none of those associated pressures (and pleasures, for sure). I am blessed with a loving and supportive husband and sons, so no complaints about that sort of support. For me, there is really nothing I could say that I "need": it is the change in mental outlook which has been so difficult, from general optimism to something from which I cannot ever get away. It's always there, waiting for the next shoe to drop. I feel so for the young ones among us who have to deal with the physical pain/suffering and fear generated by this beast along with being a good mother, wife, and worker of whatever sort. I just can't imagine. Hugs to all from this cranky [at the moment] old bat.

Further along...

Swess - is your diagnosis based on a PET only? Have you had a CT?

Z - for bone degeneration...are you on a bone shot or infusion? If not, look into Vitamin K-2 MV-4 with D3 and calcium. If you google something about natural and osteoporosis, you'll find all sorts of information. Because I won't take Xgeva again unless I get a sizable met, I started looking at alternatives and found the osteoporosis sites to have great information.

Wendy girl - some sources suggest that a fat fast counts, therefore ketogenics. When I'm not stressed out I start my mornings with a cup of bulletproof coffee instead of normal food When I'm stressed, I just cram anything I want into my mouth. I should be getting letters of appreciation from Ben & Jerrys... :-D

hi. Just back from my falsodex this morning. When I got there NP said I wasn't having Xgeva. Now it will be every 3 months. When I got to infusion they said I was having it every 3 weeks. I explained and they didn't give it. When I was leaving my next appointment sheet said falsodex and Xgeva. Good thing I got a printout. I went back to the desk and told them to read the doctors notes. My MO wasn't in today. There was another doc in the practice.

So now Xgeva every 3 months. It bothers me that this happened. I am clearheaded but what if I was t. I have been going to this cancer center for 11 years. This is the first mixup. It is so busy now. Not that I miss X but wondering how does this happen.

Back spasms for 3 days before. NP was not concerned and didn't offer any suggestions. She spent the whole time with her back to me while she read what was in the computer. I guess I am sort of ranting. I don't mean too but I need to talk to my MO. Seeing so many people in infusion who are more ill than I makes me feel bad about complaining. I know nurses in infusion are dealing with so much.

On a positive note I feel much more optimistic reading everyone's stories. Thank you for sharing

Momall, could it be the insurance company that decides who gets Xgeva and who gets Zometa?

Milaanda, I could use MORE $ from disability. What they give you per month won't even cover the avg rent out here in No. California. Of course I want to live as long as I can with Stage 4, but I'm having to take money out of savings every month now to cover utilities, groceries, etc. What do I do after I exhaust my savings? Guess I'll just have to die.

I had planned to work until my late 60s, but the bone mets and degenerative arthritis have disabled me. Tumors/lesions have compressed my nerves so I have severe neuropathy and pain, and I've lost feeling in my hands and part of my legs. I have trouble walking. I can't lift and carry things. I was forced to go on disability, like it or not, and I don’t.

We have home services thru our church deacons if we need it, but one has to ask for it...meals, transportation, help with light housekeeping, etc. If one is an aetheist or agnostic with no church or temple affiliation, that person is outta luck. No community resource help unless you're an advanced-age senior. Cancer patients need home help!

Wanted to share this picture of my DD SHes 4 1/2 mos pregnant but I think she looks big!

Babs, is this her first? She does look big for 4 1/2 months! Maybe something very exciting ahead....! And she's adorable!

Your first, too? So exciting! My mother said that having a daughter have her first is simply amazing.