Bone Mets Thread
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Lou Seal is an old timer, and he's offering his hand on the new Sea Otter's shoulder. That's what we do here, we offer a virtual hand on the shoulder to all the new ladies, as well as a big, warm virtual hug.
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Lita who could be alone with these two? Gosh you make me smile.
Patty i think they will, I asked them to make a list of things they wanna take along, they are like, we have the bags packed! take loads of pictures, whereabout will you be going, they are going to the Virginia area...stopping at different places. Enjoy!!!!
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I had some interesting insight into the ongoing requests to schedule mammograms. I went to my primary last week and joked to her that her staff was certainly eager to get me scheduled for a mammogram. They knew it had been 5 years since my last and I was asked FOUR TIMES from two different staff people about scheduling my next mammogram. All four times, I calmly stated that I had a bilateral mastectomy in 2012 and had no "mammys" to gram. She told me her staff is paid a monthly bonus (from the Duke system) based on the percentage of patients who are current on their preventive care appointments. This is what our health care system has come to! Sigh. She was going to call the Helpdesk to learn how to flag my account to not dock her staff people for my lack of a current mammogram. They even check my dental and vision checkups to ensure they are current as part of their bonus. Geez!
Babs- I also had a port with my initial cancer treatment and just hated it. It was uncomfortable nearly all the time, and I was thrilled to have it removed. With my mets diagnosis, I had a new port put in ( my veins are just inaccessible!) and the new port is a dream! I hardly know it is there, and makes my blood draws and dye injections a breeze. I was very happy to have the new port and it is nothing like my original one.
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I have heard that if you have cardio problems you shouldn't get a port, and that PIC lines are better.
I have a mild cardiac arrhythmia and take beta blockers for it.
Anyone have any experience with PIC lines?
I know I'll be "graduating" to another chemo eventually, and it will probably be the IV type. (I'm still on Xeloda pills and only get Zometa bone infusions every 12 weeks, usually thru the back of my hand.)
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Thank you all for the kind comments about a photo to make you smile. I'll put another one on soon to make you smile for another day.
Have a great weekend everyone!
Anita
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Davenport - I have no experience with rads involving the lining. What I can say is that I recently had 5 rounds of rads to part of my skull (clivus skull bone and C1 and around it). I was told I would have severe headaches (which didn't happen for me) and nausea. I had plenty of nausea and vomiting. One other thing nobody told me about is oral thrush and mouth sores. I went through sheer hell with that. Make sure you have adequate meds for pain/nausea and magic mouthwash on hand if your mouth starts acting up. Do not wait before using the mouthwash.
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So big regatta this weekend and I'm going to fake it and try and paddle,with my team. Found a cool wig at the dollar store. TooToo PINK?? At least I can be picked out of the crowd by my family lol. Have a great weekend all you lovely ladies.
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Wendy~ you could pull off anything !! Beautiful lady!!😁 Paddle your little heart out! Be safe. Enjoy the weekend everyone! ~M~
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Wendy, the hot pink wig is awesome! Any particular dollar store and we're there more colors?
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Look at that smile! Are you kidding me? A million dollar wig would not do it.
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Wendy, Your smile is contagious. How can you look so good in a pink wig from the Dollar Store? Seriously, you look fantastic. Enjoy the regatta, and tell us all about it.
Bug hugs from smiling Lynne
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lllimae I bought it at dollarama for five bucks and I swear it looks better than the two hundred dollar wig I bought lol. Will be good for the breast cancer boat and flower ceremony which is very hard for me to take part in. Chin up onward and upwards right ladies. I will take some pics and share them later.
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Wendy - Awesome wig. Awesome attitude. You have my permission to skip that ceremony if you prefer. Certain forms of denial are highly beneficial.
>Z<
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Wendy, LOVE the wig! You look great in it! Have fun!!!
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Wendy, You go paddle that dragon boat with all of us cheering you on! Love the wig.
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Wendy you look beautiful.
Lita a picc line is usually placed in the arm above the elbow. It goes all the way to the Superio vena cava just like the end of a port or other central line. The difference is a picc has to be flushed more often. It has to have the dressing changed every week. You shouldnt get it wet by swimming or soaking in a tub. You can cover it with press and seal plastic to shower. If you had a port you could get it wet when it heals. A port is under the skin so there is a skin stick to access it. A picc has a lumen outside if the body so no skin stick to access picc. You have to be careful with a picc because it can be accidentally pulled out. A picc wont last as long as a port will. Maybe 6 months to a year if well taken care of. I normally put piccs in patients who need longterm iv antibiotics. They use the picc every day. They all have risk of infections. Hope this info helps
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Wendy, I love your wig! Yes, it looks better than my $125 wig! (Of course, you are gorgeous too!)
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Wendy. Love the wig. Love your attitude! You go get em at the dragon race!!!!
Bab
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Mel, thanks for the picc info 😀
Wendy, when I was 1st dx'd with St 4 from the get-go last year, I just couldn't go to those BC survivor or Relay for Life things. I thought, why the hell do I want to "celebrate" any of this? I felt like I'd just been effed up the a@#. So I don't blame you for not wanting to attend yet.
I going to TRY to go to the local Relay for Life tomorrow, but I'm not going ro stay for the whole thing as it may get warm, and I don't do well in heat when I'm on an X cycle.
Enjoy that wig. It looks really fun.
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Wendy you look awesome. You go a paddle away. We will be cheering you on. Your so pretty any wig would look beautiful on you. Have fun!!!
Anita
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Yes Mel, good info on the pics vs port, thanks!
Wendy, You are adorable! I love that wig...
Mom, I a so happy to here Dani is doing well and doing a small get a away to boot. Fantastic!
hearing the stories of the mamma reminders brings me back to two weeks ago. I had a pretty good appt with my Onc and was feeling good just getting out of there for another month. Just as I am passing the front desk the receptionist stopped me and asked if i had filled out my Advance Directive yet and advised that "You really need to get that done soon". Talk about deflating my ballon. I was pissed. micmil, Hate to say it but sometimes I hate people too...or at least their bumbling ignorance.
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i still haven't done mine yet...I feel it will JINX me. DH knows my wishes.
Releasing doves at the Relay for Life for all of us...
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Lovely Lita~ thank you for sharing. Hope you stood tall. Strong woman.!! ~M~
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Lita57 I totally agree with you on Relay for Life I wasn't ready to attend the first year I was diagnosed either but have participated the last 3 years our relay team raised over $21,000 this year and we are just a family team with no major corporate sponsors. Our county has raised $211,000 with a goal of $220,000 which we will make this year we are second in the nation per capita for fund raising. I am proud to be able to contribute to the cause that could help all of us in the end.
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artist there should be an unspoken law - just because someone has a mouth it does not give them permission to speak!!! I
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Star~If I am not mistaken I believe Herceptin is what they give use for HER+ type cancer treatments. Each cancer responds differently to treatment. Make them give you written information about every drug available,so you have the documents to read for yourself. It helped me. I also researched everything I could get my hands on, to educate myself. And I asked a million questions. There are many lines of treatments coming out yearly. Second and even third opinion sometimes never hurt, ifyou have trust issues. Take a deep breath and remember they have treatments. Hugs. ~M~
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Artist, I get the Advance Directive request all the time, too, and I still haven't done it.
Mom, glad to hear Dani's doing well. Anita that photo was wonderful! I agree photography + nature = therapy. Always makes me feel calmer, freer and more in touch with life.
My cancer center holds a "survivor" event every year at a different venue to celebrate their patients with family and friends. I'll be going to it Sunday, and this year it's being held at the Denver Nature & Science Museum with a luncheon. I was bummed to miss it last year at the botanic gardens. I think it will be a fun time with my DH and DD who just loves this museum. Best of all, the temps are supposed to only be in the mid-70s, so very tolerable for me.
Hugs to all and happy Sunday.
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Linda, How are you in eneral, after the rads series? Is the nausea abating? Doxil gives me mouth sores, and I had/have thrush also, which responded best to warm water withsalt and baking soda mixed in. Swish and gargle, 2-4 x a day. I notice more mouth soreness when I forget to do it.
Wendy, I love your picture of you in the new wig!! Its just darling!
Z, I have a selective denial system thatis extremely helpful at times, Its easiest to deploy when I feel reasonably well.
Mel, I got a lot out of your info on picc vs port. I have had a port for over three years now, and its no bother. I can feel it bumps out a little, but its hard to see. Best thing since sliced bread, if you have veins that disappear at blood draw time.
Lita, The photo of the doves was so unexpected and so uplifting! Thank you! Also, the sweet chuminess of the seal and the otter, well, what can I say? That little arm... I was on Xeloda for two years, and now am using Doxil once a month. No hair loss, but am getting skin rash and mouth sores, dry eyes and episodic fatigue. I miss X! (Never thought I would feel that way.) Every time my tx chamges, I have to re-confront stage 4. Eventually I can move into some level of denial and get myself steady. You are very good at that, and I appreciate your blend of acceptance and outrage. We all dance to that tune, I suspect.
Best to all forour coming week. Hugs, Mame
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Mame,
Your post made me think of my current reflections on this disease. I realized it's a series of restarts. New plan, new treatment, new dx...always restarting.
I've been whining on here and everywhere about my extreme fatigue the past few months. My RO was sure I was just responding to the massive amount of changes (again) and treatments since my new brain mets dx early this year. My MO felt I was more tired than I should be. Bless her, she did much research and contacted an endocrinologist. Through her testing he feels sure I have adrenal insufficiency. He has me on a new steroid (that he promises will reduce the puffiness, weight gain and high glucose from prednisone). It's meant to stimulate the adrenal system to start producing the right hormones to enable me to spend more days up and more active instead of flat on my back. Just started the meds Saturday, so no conclusion yet.
Again, new start and new hope.
Got home from the promising visit with the endocrinologist to find a message from RO office. I had a spine MRI Thursday and he needs to see me about it. Hope it's just normal spine rads and can wait until I see if my new steroid is working. Don't want a restart within a restart!
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Kaption~sending you a virtual big hug. You are so correct with the restarts and stops. It's all like experienceing a madness. Hang in there! We are with you. ~M~
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