Bone Mets Thread
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Wendy - So glad you met that lady paddling away after 18 years of MBC. That is you. Thank you for sharing that story.
Hi MomATT. Hope the clinical trial sprint is behind you and it's more like a walk in the park these days ...
Reading. Thinking of everyone. I've been at this for a while and still need to hear about everyone's ups and downs.
I really really hate hormone suppression. I just need to put that out there.
>Z<
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hi Z...im really sorry but i need to add to your hate right now......STUPID CANCER.....everything about it hurts, really really hurts....thats another thing most people just dont get...we put up with it because we want to live , but damn it just hurts and i hate it....thanks for listening,you guys are the best, you dont have to say a word, i know you understand.
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My gosh, Nan, you've got your hands full, from reading your bio.
Yes, STUPID, STUPID CANCER!!!
And yes, the pain is ALWAYS there. We indeed tolerate it because we want to live as real people, not as complete drugged out zombies 24/7. We only take the pain meds when it becomes unbearable, and we resent what those drugs do to us.
We have to fight to keep from falling into an abyss of despair every day. It's not living, it's existing with a demon inside us.
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Hello everyone - I have not posted for quite some time, but have been reading along and think of all you every day. I am posting today because I am freaking out a little. Since starting treatment (Faslodex/Ibrnace and Xgeva) in September 2016, I had been having mixed but acceptable results. Scans in April showed some of my extensive bone mets in remission, but also some new mets to additional bones. My CA27-29 value right before starting treating was 88, so not really that high, though above normal. As I have gone along, my MO has run the CA27-29 every month and it had declined rapidly in the first two months, then stabilized in the low 40s/high 50s. Last month, it was 37, which Is just inside the normal range. However, I just found out that for my June test, the value is 170 - more than double what it was at the start of treatment. I realize that standing along this doesn't necessarily mean anything and that many women have much higher values and are doing ok. It is just a huge jump proportionally for me. My onc has said not to worry about changes in the 10-25 point range, but this is much larger of a jump. I had a lower WBC in June as well, I think because I have had bad allergies/sinus infection. Could that impact the tumor marker value?
I have a scan scheduled July 6, so nothing to do but wait. Anyway, just wanted to vent a little -- my personal life remains a hot mess (in the middle of a divorce and super busy at work), and though I have some wonderful and supportive friends, they don't know what CA27-29 is and it is sometimes too exhausting to explain it to them.
Hugs to all, Lisa
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Lemondrop~ sending you big hugs! I have blood work Tomorrow and I hate it. I'll be applying the port cream and walking the cancer walk into the infusion center. Then have the burning lovely shot of XGeva, only to be followed by feeling like I am in a fog for two to three days, I feel for you. I truly and honestly do. Like Lita said. It is a demon inside. Yuck
Nan~I am going to say I agree and I hate cancer so much. I have to ask, Was it your analogy of when you got rid of your vacuum last week? lol I have to say I laughed quite loudly. The words you chose were perfect. Lol dirt licker. Quite clever. kicking it to the curb, thanks for the good laugh!! I'm sorry you're having a rough day. IHave been having some of those myself. They never seem all that far away! I sometimes wonder if someone switched my results and this life I've been living really isn't mine. Then I look in the mirror and i see someone who has aged through this. How could I not, it's nothing but a shit stew after diagnosis.
One foot in front of the other. And on we go...because we have to...for our families.....screw you cancer, I hate you too!
~M~
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Has no one had the same side effect from Xgeva that I do? It seems to give me energy for a few weeks. Wishing everyone had that side effect even if it is all in my head but it's been the same for 5 or 6 shots.
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Ugh, trying to figure out switching chemo from MDA to accommodate my new job. Pain in the ass. Effing hate cancer. It screws up everything. Ugh.
Hugs and love to everyone.
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Juat finished cleaning ONE bathroom (which hasn't been cleaned in how many weeks?), and now I'm exhausted and spinal mets hurt.
I want to dust my bedroom as the pollen count is high, but I need to rest in the LaZboy recliner with the heat and massager on full blast for at least an hr b4 I do any of that 😓.
Damn cancer!
This is my life now...I can only do ONE thing per day...and this is my "off cycle" week!
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Dear Lita,
I'm a member of the "one a day" club too. Shopping OR walking OR cleaning. Super boring.
Plus, how does my bathroom get so dirty? Especially around the commode? It's not because of the guys - the wind currents in the house seem to take the dust and schmutz there. It's an ongoing mystery, as I'm the only one who cleans or cares.
If I take enough pain meds for the mets to stay quiet, I'm too sedated to do much either, so there it is. Blurg.
Hoping you are feeling peppier soon,
Jennifer
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lol at the word Schmutz! You ladies make me smile. ~M~
Today wasn't so bad I sat on the bed Indian style and haven't been able to do that in a year. To me that is one of those small slices of joy someone mentioned yesterday. Off to bloodwork tomorrow. Yuck. Hope everything is good to be able to start round 8 of meds. Have a peaceful night ladies.
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I think I love you guys!!!......still smiling
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You ladies are the greatest. I hate that my daughter has to do all of the heavy work, or light work when I have hit my limit. She is a single mother of a 2-year old and has enough on her plate without worrying about me. Cancer sucks!
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waving hi. Lurking to check on y'all. Many hugs
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lord give me coffee.....to change the things i can
and wine....to accept the things i cant
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Thank you Babs, AnimalCracker, Intothelight and Lynnewood1960. I'll put one one again that will make smile. Hope everyone is doing good. I got a gold star from my oncologist on Monday. Had that Xgeva shot and I swear it makes me feel like I have the flu. But all is good.
Hugs to all,
Anita
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Hi Patty! Waving back. Hope your new digs are being good to you!! Here is hoping for another painless day. Hugs and happiness to everyone. !
~M~
Nan~if I drink wine I shrivel up like sponge bob square pants under a spot light!! I only breathe on one lung, but I will open the bottle for you ladies and pour all your drinks, just keeps the laughs coming ! 😂Lol
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I think we all need a Crown for putting up with this dreadful disease. One of my favorite birds I took on the Chobe River in Botswana last year. It is called a Crowned Crane! Just to make you smile today and think that nature always makes us laugh, even in the bad times.!! Hugs to all and put on your crown!
Anita
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magnificent!! Truly captivating. I need a crown today.! Off to blood work and XGeva shot gross! Port access time yuck! Hating it! Thank you Anita. I will take it with me ! ~M~
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Micmel, I had the Xgeva shot Monday. I swear it makes me feel lousy for a few days. Put on your crown and go for it. Good luck. Hugs to you!
Anita
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Count me in the one activity per day club!
Lemondrop - TMs can go up with an infection - it happened to me with an UTI once. Wishing you the best with your upcoming scans and your personal life.
Some good news at last for me. This week's labs show TMs are stalled in their tracks! They had been steadily creeping up since the end 2016.
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Lol to the coffee and wine Nan!
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LindaE, WOOHOO for stable TMs. That is good news indeed. How are you feeling?
Anita, I love the photo. Have you travelled all over the world? It seems that you have a treasure trove of breathtaking photos. You have a gift for photography.
Intolight, Your daughter is helping you because she loves you and cares for you. You shouldn't feel bad for something that is beyond your control. You help out your daughter, too, so don't sell yourself short. I am sure she appreciates the fact that you are there for her and for your granddaughter.
Lindalou, How are you and your DH doing?
As far as the one activity a day is concerned, every once in a while my one activity is sitting in a comfy chair reading a book,especially on a cold rainy day. Does that count?
I hope you all have a good day today.
Hugs and prayers from, Lynne
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Lynn - Yes, it counts! Thanks for checking on me. Those head rads did a number on me the past 2 weeks (nausea, vomiting, oral thrush), can't wait for them to taper down. It now seems trivial after the news of my TMs! How are you and hubby doing?
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Photogirl: A bird with a hat! Way cool hat.
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Photogirl - you need to get yourself a gallery! Your photos should be shared with the world and the world would buy them!
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Lynne, Thanks for asking. DH saw his MO today and his PSA is 0. Whew...we'll take it. I'm getting some SE's from Ibrance like nasty vertigo and severe leg cramps. Have started back on magnesium so maybe that will help but cancer pharmacist said Ibrance can do that. Do you or dh have any medical scans/treatments coming up?
Linda, You know how happy I am for you. Now for you to feel better and lessened SE's for you.
Anita, I'll have to get a recommendation from you about purchasing a 70-200mm lens. They get pricey fast and I need a new one. I have a Canon EOS Rebel XS that I'm playing around with. Love your Crowned Crane.
Patty, how was your trip with the kids?
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LindaE- Wonderful news!! And let it keep on getting better and better!!
Lynne- Yes!! what's with all the cramps?! don't get them often, but when I do it feels like my leg(s) are having a heart attack...
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aack- I meant to respond to LindaLou! mixing up my Lynne/Lindas!
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Cure-ious, That's a great description of the cramps! Starts in my toes and often cramps go from there to calf, to thigh. I drink lots of water so dehydration isn't an issue. Sure do hate them as they ruin any sleep I get. I'll post on Ibrance thread too.
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Hello everyone, just dropping in to say hello. While I don't have bone mets, I lurk here to keep tract of my friends from a couple of other threads. I just have to say Anita, aka Photogirl, I agree with everyone here your photos are marvelous. I think you should share them on another forum here called "Growing our friendships after treatment" the topic is "Picture This". I'm sorry I don't know how to just give you the link as I'm a little technically challenged :-). There are just a few women sharing there but they seem to always have great photos to share. And I think it's another place for you to share your beautiful pictures. They are really too wonderful not to be shared with as many people as possible.
Praying everyone has a good day today.
Faith (in the future).
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