Bone Mets Thread
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Overjoyed, have you considered looking into palliative care? It is my understanding that this is not remotely like "hospice" but rather care which helps you to manage pain-related issues when being treated for cancer (and perhaps for other things as well?). I feel as though someone just wrote about this.
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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
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Lita57,
What were Zometa symptoms after the 2nd or third infusion? I have lower back pain and fatigue even 1 week later.
Paula.
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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.
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Sharon, I've had spinal fusion surgery, radiation and RFA performed on my spine and lumbar. Where are your mets on the spine specifically?
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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.
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Milaandra, Woohoo for your good news. You don't need a label like NED. I hope you continue seeing no progression until you are very old and gray.
Sharon, It sounds like you and your MO have a comprehensive treatment plan in place - rads, chemo, and a nutritionist. I hope that your pain decreases or disappears once your treatments are underway. Has you Mom (and/or other family members) considered a family support group? It is sometimes difficult to accept a loved one's diagnosis or to learn the best way to help or even cope. Everyone's needs are different, but I thought I would mention it to you. I am sure that your MO's office or cancer center would be able to recommend something. I am glad you are considering a cane. Some people don't think about it until after they fall and break a bone.
Hugs and prayers to all, Lynne
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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.
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Momall,
I have been afraid of massages since my dx. I have mets all the way up and (except a couple of cervical spots). Anyway, can the spa gift certificate be used for a facial? I find them very relaxing and much safer.
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lita57
Thank you
Paula.
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I hate to ask what is probably a foolish question, but is the concern about massage related to damage because of compromised bone, or is it because it might cause cells to break off and metastasize to additional spots, or both?
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my concern is bone breakage. Not a foolish question at all!
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Hi Overjoyed:
I hear ya: I was in pretty bad shape post-diagnosis. Mets in lumbar and cervical. Worst was my tailbone, which caused shooting pain down my legs. But, within a couple weeks of starting treatment, the pain began to subside and is now virtually nonexistent. The only lingering problem is a healing mets-related rib fracture. And a non-cancer-related fracture to a foot bone (I fell). Because all I needed was another medical problem.
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I've had MRI CT's and PET scan and yes it is pressing on some nerves.
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My MO said no physical therapy or message because of my bone mets. She did say accupuncture was ok for pain mgmt.
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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.
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Still catching up, but...
I'm sooo enjoying Anita's amazing photos. Don't you think she should consider creating calendars for bc charity? (She can keep her amateur status and still share with the world!)
We had an email at work about a bake sale for a breast cancer support group...oh, they are so wonderful, oh, they do so much good...ignoring the fact that their one stage IV employee can't take advantage of that support as it's only available during regular working hours. There is nothing for those of us who are the Working Wounded...like many other people affected by this nasty disease, we are easily forgotten.
I'm just curious...forgetting about medical research, what support do you think real stage IV women need? Someone to clean the house once a week? Social support groups? Activities to make us forget our troubles and laugh a bit? Alternative therapies? What would make the biggest difference in your life?
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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.
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Babs, I'm so happy for you. That's the best news you can have!!! I'm glad your in the trial too. Now you don't have to worry too much to get to Paris and Israel. That's so awesome!!
Mom, sorry my husband couldn't help you more, but sounds like you have things under control at the moment. Always a roller coaster!
Illimae, you look great, I love the emoji. Hope you feel ok. I've never had chemo, but I'm sure it's in the cards one of these days. I just take the oral chemo Xeloda.
Welcome Dani fd. Stick to these boards. I could have gotten to where I am mentally without all of these great ladies.
Hope everyone has a good weekend.
Hugs to all, Anita
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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
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Milaandra so nice to see you on the bards again and I'm so happy you are doing well that's great. 😊
So checking through the posts there are a lot of newbies . Welcome one and all you have found a wonderful resource of kind knowledgeable woman. They are like a warm hug on those rough days I couldn't do this without them.
My TMs are back to normal again can hardly believe it. So I continue with Taxol and my hippy stuff see where it goes.
Milaandra I would buy that calendar Anita is so talented
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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
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Maire, you are absolutely right. So sorry for this headache. It gets to a point if a/t does go according to schedule i cannot believe it. DD was suppose to have Herceptin a while ago, and NP misread the Dr's note, she did not get it, and then when I called attention to it, bcs I told her oh yes your are suppose to get it, Onco wrote an email it was a mistake but no apologies, but it caused DD to have to stay a whole hour just for that infusion, they had to treat it not as a continuation but as it was first. And then the Xgeva they just forgot to give it, this happened last tx, so I made sure to call on the morning of the infusion and very nicely i told them I'm just remindg you. She gets it every 28 days. Does it help? I don't know, but if they would take if off, i'd like to know why. I am still trying to figure out when they give Xgeva and who gets Zometa?
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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!
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Lita-I am almost 68 and still work full time which I love. I manage a hair restoration drs practice. It's the best distraction so I know how you feel about having to stop working.
Wendy-that's great news!!!!
Great weekend to all
Babs
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Wanted to share this picture of my DD SHes 4 1/2 mos pregnant but I think she looks big!
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I agree Babs, she looks big for 41/2 months. She also looks so beautiful. Do twins run in your family by chance? Wouldn't that be something????
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Babs, is this her first? She does look big for 4 1/2 months! Maybe something very exciting ahead....! And she's adorable!
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This is her first at almost 40and it's not twins. Just a big boy!!!
Babs
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Your first, too? So exciting! My mother said that having a daughter have her first is simply amazing.
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