Bone Mets Thread
Comments
-
BJ thanks so much.
Kaption what a mysterious phone call. I learned we tell all doctors offices D has no land line. Period. Like this they call the cell, and it's usually glued to me. Of course that one time that i leave it then we get THE phone call! And glad our Onco is caring enough to see what else they could do for you.
0 -
Mame - Every time I think the nausea is getting better it comes back with a vengeance, with vomiting to boot. A lot of vomiting since rads to head. I now decided to take anti-nausea meds on a regular basis instead of waiting. Speech is a bit worse, tongue swelled up a bit more but hoping this is a temporary SE of rads. Are we having fun yet? Any further news on your biopsy?
Kaption - I hate missing calls! Hope you get more energy - your MO seems to be on top of things.
0 -
A big thank you to all in this thread sharing updates, good or not so good. Since I haven't been dealing with this very long and am currently doing well, I need the downs, as well as the ups to keep reality in check. I am inspired by how well you all continue to push on despite the set backs and "restarts" and even reading about those who've decided they've had enough. I find it comforting that we're a tough bunch, just had to let you all know
0 -
I appreciate the updates, too. I'm a little down today....maybe going to the American Cancer Society's Relay for Life wasn't such a "good" thing. All the speakers talked about "being in remission" because they found their cancers early, etc., you know the drill, all that Happy, Happy, Joy, Joy stuff.
Well, I didn't hear any encouraging news for us BC metastatic gals (or other type of metastatic cancer patients either), no speakers currently fighting - not even a "Metavivor" table.
So that's why I'm a little down this afternoon. I was thinking about going to another one in a few weeks in a neighboring town, but DH said he has a golf tournament up in Napa that weekend, and I can go with him if I want to and we can stay 2 nights. The way I feel now, frankly I think I'd rather do that instead.
Maybe I'll feel better about things next year, but this was just a little too much for me...not physically - I had no trouble going around the 1/4 mile track twice (I went once for me, and once for my late mom who passed from soft tissue sarcoma when I was a teenager) - but mentally it was rough.
I feel I can be REAL with all of you. The speakers were so "grateful" that they're still here and they got thru their treatments and are done, etc., etc. and that's fine, but THEY DO NOT FACE WHAT WE FACE EVERY EFFIN' DAY! Our chemo, our radiation, our targeted therapies, and all the other crap will NEVER end. At least not until we graduate to hospice.
There. I'm done. Hopefully I'll sleep a little better tonight, and I won't let this little emotional setback continue to deflate me and make me lose my will to fight.
Thanks for listening.
0 -
Hello ladies so the wig was a hit best five bucks I ever spent😜 Regatta was busy and exhausting I just didn't have the same energy I had last year stupid chemo, but it was so fun. I met a woman that paddles on a breast cancer boat not mine (there are many) anyway she was diagnosed stage four mets to bone lung and liver in 1999. She is still paddling and looked great. Such a huge example of how it can be for any of us hopefully all of us. She did chemo twice and now is on Arimedex (spelling) and doing very well. Let's all be like her
0 -
Lita~ I hate to say it, that's why I don't even like going out sometimes. Last time I was in the infusion center I walked in and someone had just rung the finishing of the chemo bell. So I had to congratulate her and I was happy for her, I just worry that it just always comes back. Then I knew What was coming the "when are you finished" question. Um never.... I'll be here every month for however long monthly, and who Knows how long after that. She just blankly looked at me and high tailed it out of there. She didn't even want to think that this could happen to her, if I am honest she was always one of those people who talked over you and their cancer was always more dramatic. Look lady, cancer is spelled the same for everyone. It just depends on how long you're lucky enough for it to remain dormant, but it's always there somewhere lurking. I am beyond convinced of it. The fact is this is one roller coaster no one wants tickets for. I intend to fight my hardest but at times I get tired. I hate the constant treatment crap. I take so many pills ick! Vitamin this and vitamin that. Enough already!!!! The only break I even come close to getting is laying in DH's arms where I forget for a few seconds here and there, or sleeping. Even then the heat flashes crash me into reality until I fall back asleep again. Viscous cycle every single day. Just like you said Lita. It's the pits. I couldn't bring myself to go to relay this year. Last year My name was on a candleabra. And I couldn't see my name on it. My DH and DSS went because they had a team in my name, they had a terrible time keeping it together. It was torture for them. They said after that, they didn't really want to go this year again and I didn't again either. I don't feel the need to celebrate something so awful that has happened to me. I always feel like I'm getting the black ribbon, instead of the pretty pink happy one. It just bugs me. I am sorry you're having a rough night. I can relate. My weekend has been rough. Hugs ladies ~M~ Wendy,So glad you were inspired. Ty for sharing that awesome woman's story. So glad you went and kicked some butt!!
0 -
Waving hi and wishing all the best dealing with this BEASTwe all have to deal with.
I'm still hanging in here, feeling a little tiny bit better.
Infusion day tomorrow
Cheers
0 -
Ain't it the truth, Micmel? Your message cheered me up quite a bit. But what hurts the most for me is when members of my DH's family ignorantly ask, "Oh....I thought you were done with chemo? You mean you're still going to Tx's?"
Uh.....gee....I guess you didn't even BOTHER to read the updated Christmas card I sent you. What part of STAGE 4 Metastatic cancer do you not understand? You have a college degree, after all. I specifically said in the holiday letter that I will ALWAYS be in treatment.
I guess people are so enmeshed in their own lives that they forget. And that's okay. That's the way it is. But how crass to ask a question like that to one of your own family members?
One of my "friends" was all buddy-buddy when she was going thru her uterine cancer treatments...emails and txt msgs all the time, but now that she's done with her treatments, it's "see ya later, pal. I've got places to go and OTHER people to see now." And like the woman in your clinic, "she was always one of those people who talked over you and their cancer was always more dramatic." The port hurt, the Taxol made her nauseous, on and on and on. Oh, honey, I always wanted to say, at least your "nightmare" will end in a few months....mine has just begun and it will never end. But I never said anything. I wanted to be upbeat and hopeful for her because she is my friend.
We're in a special club, us Stage 4 gals, and some of my other friends truly DO get it. They call me on a weekly or at least a bi-weekly basis and see how I'm doing. They offer to cook a meal once in a while. They take me to lunch. But there will always be some people out there who are so selfish that all they can think of is themselves and how our situation makes them uncomfortable, reminding them of the mortality we all share.
So now DH and I are looking for a place to stay in Napa. At least I have that to look forward to. And I'm gonna enjoy the heck out of it. My next scan is in August, and judging from the way my back feels, I can feel things are moving. Not gonna let it worry me. Gonna have fun and take pictures.
Have a great week.
0 -
Artistatheart, Sometimes I can't stand people either. I've never said anything about this but my second visit to my local MO they assigned me to a chemo nurse to go over the medication. She was nice and in my opinion not the sharpest knife in the box but I said something about having bone mets and Stage 4 cancer and how scared I was and she looked at me and said " I would die if I was diagnosed with this"😳 I was shocked that she would say this to me. Then I need to call her to renew my medication and I need the phone number because she said I had to call myself. So I nicely said would you give me the number. She leaves a message for me. I call the 800 # and it was a number telling me I have won a cruise and to follow the numbers to sign on. It wasn't Caremark at all. So I went back to my MO and told my nurse who gives me shots and asked if there was a problem with this chemo nurse. Needless to say I haven't seen her since. I think my MO got wind of it and did something about it.
Always something but some people don't understand how stressful this disease is!
Hugs 🤗
Anita
0 -
Sometimes I think that those people haven't even really experienced something that could possibly alter their lives as we have. I don't think some could understand the level of stress we face. The worst part is, I think that is why I even got this disease, it's really the only thing that makes sense. Stressful ever since I can remember what being alive was. From womb to woman I always say. Stress slicing through my years. Bad divorce. Bad non unconditional love from a parent (father especially) mom is a crackerjack crazy one, and after I became an adult it wasclear who the parent really was. ME!! Siblings aren't even even worth mentioning they are that pathetic. I feel like it's always been apart of who I am. Raised two kids alone along with my precious DH who is my lifeline. The only good thing in my years of what always seemed like a battle..... oh and I do agree with everything you feel Lita and the others. Anita~ stress is awful. Z had posted some article about stress and how it effects cancer and I seem to be the poster child, I realize I am not alone. It seems like these days life is a rat race, the one thing I will say cancer has forced me to do is two things, 1.) sloooowwww down. The things that seemed like urgent matters, suddenly I couldn't give a rats ass about. 2.)if you bother me, or annoy me, you're officially removed from my life. Ba bye! I am not being anyone's door Matt any longer. Not a chance. So those are the ways cancer has changed me that I actually like. The other stuff. Not so much. I was kinda fond of my breast and not having my stomach look like a road map. One day at a time is all I can do. Hugs all around. Was a tough weekend ~M~
0 -
Kaption, Please let us know what you find out about your spine. Can you share the name of the new steroid they are recommending? That sounds promising. Its a weird kind of fatigue for me, I can lie down and sleep awhile, then just lie there, because doing things is too much. Not good for my sense of efficacy! I have been reading a series of detective/police procedurals by Irish author Tana French. wicked good. I forget my own life when I get into those stories. Best wishes for feeling better, K. Mame
0 -
Praising my sweet Jesus for how awesome I feel! Just finished 24th cycle of Ibrance/Xgeva/Faslodex. Have had little to no side effects the entire time. Spent yesterday putting out 30 bags of mulch, planting beautiful flowers, mowing, pulling weeds...literally about 7 hours of yard work in the heat and humidity! Praying for continued stability and the same for all of you! HAVE A BLESSED DAY
0 -
Micmel, I know how you feel. I think I got this BC from too much stress my entire life. Running a stressful business, and I'm a perfectionist so that is a stress in itself. Now I'm training my brain not to worry or think about stressful things, just pass it on to someone else. Especially with bone mets, I can't lift anything so all my hard work has to be handed over to the men in the family business. I hope you have a better week. Sorry for the bad weekend. We all have them. At least I got a gold star from my MO today. Says I'm doing great!
Kaption, please let me know what you find out about your spine. I have lots of mets in the lumbar and thorasic and they worry about it getting into the canal which is not a good thing. They keep a close eye on that with MRI. Hope you get good news. Any good news gives us all hope with dreadful disease.
As I said before, I go out and take pictures. I'll put a smile on your face today, I was in the Socorro Islands, diving and a pod of dolphins came in at 80 feet down, which usually never happens. They are really shy but this one seemed to be curious so I took his picture. Wild and free, they came in fast and left fast. But what beauty there is in nature above and below the sea. I was really fortunate to see them. He looks like he is smiling at me and I just love to take nature photos, takes my mind off all the troubles temporarily. Hope you enjoy this. It will put a smile on your faces. Hugs to all,
Anita
0 -
Anita I must say you made me laugh. It's just truly unbelievable. You know when d was diagnosed with liver mets, Onco sat with me and started on the road to tell me how serious it is, and maybe she should do some planning… I looked at her, and said: what you talking about…there is a lot of work to be done blah blah, she never spoke to me like this again, even with constant progression, I was stunned that someone in her stature would be so dramatic early in the new game.
Lita it's really too bad that these things could bring you down. Dani hates all this October thing, when the month comes and they don't stop the advertisements she wants to smack everyone.
And Micmei, Dani does just that, she doesn't give a rats ass. First she did not tell a/o aside from her sibs. And if someone has any type of attitude or gives her the creeps she is outta there, no explanation necessary. I don't excuse myself in her name, if there is an affair she misses, I just say yeah, she is not here. I don't care anymore, very few ppl really care WHY you are not there. she taught me a lot how to be more honest about my relationships too. It's sad to hear of how much anguish you had to go through, but look at ya, you turned the boat around.
0 -
If I haven't told you ladies how wonderful each and everyone of you are. I am saying it now. Some days this is the only place that I know I can go to where people truly do understand. I am realizing that when people who are close to you. (Not DH) realize you're sick. They either cling to you sweetly and supportively, or they slither away like the snakes they are in order to avoid looking weak or vulnerable. Or they are afraid they will catch it almost. Well I say screw you and the driver that accompanies you! I have let so many relationships go before I was even diagnosed, because I am sick of losers and complainers. I have stage four and I am still doing what I have always done in my house just at a slower pace without a doubt. I am trying to get back to excersise again, I miss my old gym, I dont want to go back there because people knew who I was. I don't want to have to explain where that person went. I'm different now. I just miss who I was and that life's memories! I hope this week is better, thank you all again. ~M~ That picture is amazing. Quite some talent there Miss Anita dear!! 😁
0 -
Photogirl- your pictures are amazing.
My new steroid is just good old hydrocortisone. The dosage is interesting. In the first week I take 20 mg in the morning and 10 at 2:00. The second week is 15 in the morning and 10 at 2:00. The third week is just 10 in the morning. Then I call him and tell him how I feel. I'm on my third day. Haven't seen much change yet.
I'll let you know about the spine. I think they are worried about T2 and C2. But, given my recent brain dx that seems to be in the lining/fluid it makes it scarier. And, actually if the menges are in the fluid THAT could be the cause of the fatigue. Not good. But, not jumping to bad conclusions. I've actually gotten pretty good at patiently waiting for results. My results are usually ready the next day and I can read them. But, I have my MRIs done at a different hospital and my MO was on vacation last week.
MameMe, I usually veg out with my iPad on the sofa.
Hugs to all for good days and fresh starts.
0 -
Anita - wonderful picture of the dolphin. He/she is definitely smiling at you! You say you aren't a professional but I think you are. Being a professional just means you get paid, right? Has nothing to do with the quality of your work!!! Keep posting. Maybe you should start a new thread for your picture of the week! I love seeing pics of babies and furry friends. Now we have your beautiful pix! Thank you!
To everyone feeling blue lately - this truly is the one place you should feel comfortable venting. We are the ones who get it! We understand!
To everyone feeling good - keep up the positivity and share your joy. We get it! We understand!
((Hugs)) to everyone!
0 -
My wife has numerous small mets to the spine and in late December her ER+ turned triple negative. She's been on Xeloda for a few months and this coming Thursday is crunch time; a PET scan. She dealing with Xeloda's SE's pretty well until she went on Zometa, a bone strengthener. Now the combination of the two makes for some painful SE's.
Speaking of dealing with nasty people while Stage 4. I would like to publically thank the Doctors and staff of Kaiser, Portland Interstate for being helpful and compassionate. It must be very stressful for them, especially in the infusion room. Some people have actually died in there.
0 -
Hi Mike, did she just start Zometa? I feel achy after my zometa infusions for a little while and then it goes away.
0 -
Mike, make sure she stays hydrated and takes a Benadryl 1 hr b4 the Zometa infusion. That has helped me immensely. When I don’t do that, I feel like I've been hit by a train the next day, and the diarrhea is awful.
0 -
Very achie from Zometa, places she's never had pain before. Had some fast bathroom trips but not much lately. Just a lot of bone aches and pain. She drinks gallons of water too. She'll probably turn into a fish if this keeps up.
MikeW.
0 -
Mike, was this her FIRST Zometa?
I couldn't get off the darn couch after my first one...aside from running to the toilet every half hour.
The subsequent infusions were much better...hardly any bone pain with minimal diarrhea that was managed by Imodium.
One thing to keep in mind, Zometa is actually a REAL chemo drug for certain bone cancers. They give it to us in a milder strength. It's reassuring to me, knowing that I'm fighting Mr. C on both fronts.
0 -
Thank you ladies, I'm glad I made some of you smile. Animal Crackers, I'm not a professional by any means, I think I get really lucky because I have a lot of patiences and perfectionism. Thank you for liking the Dolphin they always make me smile.
Anita
0 -
Anita, your photos bring many smiles to this thread! Thank you so much for sharing, they are beautiful! You are really talented!
0 -
Anita you are very modest! Maybe that's why you are so good!
0 -
Wendy- Great wig you look good in pink! Hope you had a good time paddling!
Ronnie
0 -
Anita that Dolphin picture certainly made me smile!!! Thank you for sharing!!!!!
Bab
0 -
Anita, love the dolphin picture. You are a true artist.
I get achy on Zometa also but I have learned that if they give me a slower drip, I have less pain. It is worth asking if they will do a 30 minute drip instead of 15. The last time for me was Thursday and I was able to attend the Fair on Friday. A slow drip and lots of water seems to work for me.
0 -
For everyone - if Zometa is so difficult, why not get Xgeva. DD only got Xgeva.
0 -
Anita thanks for pointing out the beauty in life.
Babs how are you doing?
Kaption hope you could drop the steroids soon enough.
0
