Bone Mets Thread
Comments
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dune - thinking of you today. Let us know how your first radiation tx goes. In your pocket
Romansma - how's lbrance treating you ? If you have said I missed it. Hoping for minimal side effects with maximum cancer cell killing effects
Good morning to all. Hope everyone can find at least 1 thing to be thankful for today. I know I am thankful for y'all
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So far of all the treatments I've been thru radiation was the easiest except for the skin irritation from the rads. I'm getting to the point where I'm hesitant to tell the dr of any new pain. Every time I tell her of a new pain she changes my meds. When I started with this thing I was told chemo would be held off until I exhausted the anti Hormonals. Well I ran out of the anti hormones and am now on my second chem gems ar failed me so now on taxol. Three years of this and I wonder What is nextI Using an IPad prefer la
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Man I know that feeling! Telling the MO and those darn TMs are hair raising. I too am hesitant.
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Hey Patty, good to see you here....hope that means you are starting to feel a little better. Hope you get back home this week! Ibrance is going well. Only SE I've noticed so far is increased hot flashes. Probably from the Femara and I see that as a very good sign! Having blood drawn this week to check on counts. Really hoping my wbc cooperates
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Good luck with your bloodwork Romansma. Are you feeling any better Patty? Thank you all for your insights and suggestions regarding rads. What you are saying fits with what I can remember them telling me. Also, I know what you mean about moving on to different AIs. I don't like the idea. On the other hand, I do hope she changes mine, because I don't think it is helping. I'll find out Thursday. 15 minutes before I need to leave. I'll see you all later. I'm grateful for you. Be well today.
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Done. Zapped some tumors. Take that nasty cancer!
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Glad your rads went well Dune. Easy as. Mine here in NZ had pics on the ceiling too, but they were cartoon lions and bears.
Patty - whoo hoo! So glad they FINALLY figured out what the problem was. How frustrating and miserable for you. But at least there's light on the horizon.
Good luck with bloodwork Romansma. Femara definitely causes hot flashes. As I tell people - I'm still hot, but now it comes in flashes.
So glad things are working well for you so far.NY - you've been through the wringer too. Fingers crossed for Taxol to do it's job for you.
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Good luck with your blood work this week, Romansma. Low counts seem to be very common with this med but I would think they'd have to be pretty low for them to discontinue. I'm so glad you're feeling well.
This week I'll be seeing my doc and he'll probably have something to say about my rising tumor markers. I hope not, though, as I'm not eager to change my treatment. NYCchutzpah, like you, I also don't like to look for trouble, and hesitate to express any concerns so as not to lead him into changing anything before it's necessary.
Patty, I hope you continue to feel better! And congrats, Dune, on your successful rads treatment. I know that I am without pain today because of the radiation to my broken vertebra 3 1/2 years ago. It's a small miracle.
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Sandilee and NYChutzpah, I'm in the same boat re. rising TMs. Seeing my local onc on Wednesday, but will rely on my UCLA onc to call the shots, which will no doubt start with a scan. But starting to tick off tx options, even at this early stage, is scary! And of course, I'm afraid a scan might divulge something that needs more than an A/I. (Sigh...)
Glad #1 went well, Dune. And it sounds like you're in high spirits today! How many sessions will you be getting?
Happy March to everyone! Can't believe we're into the 3rd month of the year already!
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Hello to all,
Patty how are you feeling today? Praying things are improving!
Carla thinking of you and hoping you're feeling better, please let us know how you're doing.
Dune, glad you have your first rad treatment behind you. The Cyberknife I had done to my rib and L5 required me laying there for 2 hours, I had 5 treatments and the Stereotactic Radiation to my humerus and sternum took an hour and a bit of being strapped down to a bed that was molded to my body. That was another 5 treatments. They alternated between the two every day for 2 weeks. It was hard but I'm glad I did it and my last CT scan showed my mets are healing. I still have some pain in those areas but a definite improvement and I'm hoping it gets better as time goes on. Wishing you get much pain relief!
Deanna and Sandilee hoping your rising tm's turn out to be nothing to worry about and that a scan proves the same.
NYC, I hope this treatment is working for you and getting things under control. I too am afraid to discuss any new pain for fear of having my meds changed.
Romansma, I'm glad you're doing well on ibrance and femara and praying for your wbc to cooperate!
I hope I didn't miss anyone, it's so hard to remember everyone but thinking of you all. Hugs, Annie
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NYCChutzpah, probably b'cuz I have an upcoming onc appt., I keep thinking about your comment and Sandilee's agreeing re. not wanting to tell our oncs about any new pain -- something I think a lot of us experience. And I couldn't help think about what UCLA does, which is give you a short form to fill out at each appt -- about 6 questions asking specifically if you have experienced any new pain, headaches, and several other things I can't think of at the moment, since your last appt,. which makes it harder to ignore them without feeling like you're lying. Plus my DH always puts in his two cents worth if I check "NO" where he thinks I shouldn't. So I add comments like "very minimal," or "due to (whatever I've decided caused the problem)," where none are requested -- hoping that will lessen their importance! But it's tough to ignore new or increasing pain when specifically asked, and I have a feeling patients not truthfully reporting these things is exactly why they do this. Anyway, just thought I'd share...
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Everytime I see my Onc, she questions me a lot. Somehow, she must know when I am evasive, because further down the conversation, she comes back asking more questions and has a way of getting to know what she wants to know. Plus, my bf accompanies me to all my appts which makes it next to impossible to hide or trivialize anything. Oh well...Linda
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Happy March everyone! So ready for spring, but we had a couple of inches of snow this morning. I'm so done with winter, but it's not done yet, unfortunately! I just wanted to stop in and send healing wishes to everyone. I read every day , but haven't posted much because I haven't had chemo or radiation, so I don't have much to offer the discussion except good wishes that everyone gets through her challenges as easily as possible.
I have a blood draw Friday and see the MO next Friday for results and another round of Xgeva. Tm's were way down in early February, but I don't know what to expect this month. I feel great and no SE's from the Xgeva or Aromasin except for minor hot flashes, so I 'm feeling pretty upbeat right now. I hope to avoid the roller coaster some of you have experienced for as long as I can.
Patty, I hope you're home or will be soon. What an ordeal you have had!
Dune, good to hear you first rad went well. I hope that continues to go well.
Myra, any word on financing the Ibrance? I hope you get good news on that soon. You have enough to worry about ( don't we all) without having to worry about the money to pay for a drug that could benefit you so much.
Romansma, great news that you're doing well with the Ibrance. I had a horrible time with Femara after my first dx, so I'm glad you're doing ok with it.
I know I've missed some of you, but I wish everyone a low stress, pain-free, feelin' good kind of week.
Sharon
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good morning ladies : update on me ; I am still in the hospital but feeling better. Hopefully will stop all iv meds this am and out me on oral meds so I can hi home with the right.
Dune - 1 rad down. Way too go
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Patty so happy to hear God healing news from you.
Update on Ibrance: got my copay card from Pfizer. Optimum RX should be sending 2 months to me on Friday. Will cost me $17.66 cents each month including the letrazole. They are also now starting to do one month free trials I understand from my onc nurse. Now here is the million dollar question: if they are doing this "fantastic copay" card for so little per month, why are they allowed to charge $9000.00 and freak everyone out???? Am I missing something here
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oops should be good healing news.....darn predictive text...lol
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Myra, they can get away with that for pt on Medicare Part D (prescription) plans cause they won't extend co pay cards to governmental run programs. My prescription Part D won't cover it & the pharmaceutical won't extend the co-pay. So anyone on disability who lost their regular medical insurance due to disability and was forced into Medicare is in this boat and/or folks that are retired and weren't able to carry their medical insurance into retirement. Very frustrating. Also applies to Affinitor.
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Patty, So very glad to hear you are on the mend! Hope you get back home to your own bed soon. I have not been posting lately but you have been in my thoughts every day. You are a super trooper, not a wuss!Dune, Glad the 1st zap went well. Hope the rest are easy-peasey and bring you some good pain relief.
Deanna, Hope the increase in your TMs are just a blip and turn out to be nothing. Wishing you a good and reassuring visit with your local mo today.
Romansma, So happy to hear Ibrance/femera is treating you well so far. Fingers crossed!
Sharon, I was out of town for a while and "missed" the wedding, so sending you and your wife belated congratulations! Glad to hear you are feeling good.
As for me, did eventually get my PET scan and although there are still many sites with activity, the report says they are fewer and somewhat smaller with no soft tissue involvement. Have seen 2 neurologists and now have had mris from brain to pelvis and 2 EMGs but still no answer to my walking problems. Considering going to Mayo in Rochester for 1 last try before I give up, but it will have to be on my own dime.
Sorry for not addressing everyone here, but wishing you all a good pain free day!
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Hey Jobur, good to hear from you and happy for your results. Didn't realize, or perhaps I missed your walking problems. Hoping it gets better.Patty - great news. Don't overdo it when you get home - take it easy.
Wishing you all a great day - Linda
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Jobur, good to hear from you. I hope you were somewhere warm while out of town. This Wisconsin winter has outlived it's welcome! Thanks for your congrats. We had a nice little courthouse wedding. Good to hear your PET results were good. I hope someone can get to the bottom of your walking issues.
Patty, hope you're home soon.
Myra, great news on your Ibrance Rx. The whole funding thing is a bad joke, but I'm glad you're getting covered.
I hope everyone else is doing well today.
Sharon
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Hi all! I've been keeping up reading but not posting, I've been too sick. Thought I had an allergic reaction to mold, but apparently it was this vicious flu that's going around. Never, ever have I been so sick, even chemo was easier than this week has been.
I'm now on this $60 narcotic cough syrup which is supposed to help me sleep (yea OK, when will that start?) But I am slowly getting a bit better, though I still have coughing fits which I swear are going to break a rib.
Anyway, I have taken my little blue friend (sleeping pill!
and my teaspoon of golden cough syrup, so I will say G'nite. Hope everyone is well. Cheers, Dee 0 -
Patty - glad you're on the mend. Hope you're home by now, especially as it's tomorrow here.
Jobur - good to hear from you again! Glad the PT scan was good and hope you get the walking problem sorted soon.
Dee - I am so sorry to hear you're sick. Flu is pure misery.
Today was kitten volunteering day for me today. One of the kitties had her babies shortly before I arrived! She's beautiful and sweet. And she has four babies. They are adorable.
Hugs to all,
Terre
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Dee, hope you feel better soon. That flu bug is a bad one
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good morning ladies
Gg - get well soon. The flu sucks
Kiwi - aww love the pics. So jealous. Nothing like newborn kitties. So sweet of you to volunteer
Waiting for them to come and take me for test. Putting tube with camera down esophagus to tummy to look around. Praying for answers. Only thing they know for sure is that it is not cancer related other than just having a weakened immune system. So that's def something to celebrate. Ct MRI shows no progression and even some shrinkage.
Dune - is this day 3 or 4 of radiation. How's that going for you
Hello and hugs to all sorry to sleepy to post to all
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Patty - Yes, reason to celebrate! Hope your test goes smoothly.I heard today from my nurse re the CT scan I had in February. I just could not wait until 18 March when I see my Onc. Anyway, good news. No organ/lung involvement. Bone mets stable and slight regression of axillary node met. I am so thankful.
Wishing you all a good day!- Linda
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Yay Patty and Linda! Double good news! Good luck on your test Patty-Love the kitties!
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Patty, praying this test gives you much needed answers. Great news about the scan and mri showing no progression and shrinkage. So so happy for you! Hoping you're one step closer to them figuring out what's causing your tummy troubles.
Linda, good for you calling to get your results! You relieved some of your anxiety and got good news, doing a happy dance for you!
Jobur I sure hope they can get to the bottom of your walking problems but it's good that you're having fewer sites with activity.
Dee, sending you healing hugs, it's no fun having the flu, especially when we're going through enough already. Hoping by the weekend you're back to normal.
Terre, love the kitty picture, thanks for posting it! Major cat lover here!
Hugs to all, Annie
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Great news on your CT, Linda!
Ditto for your CT/MRI results and other reassurance, Patty! Hoping the camera procedure is an easy one. Are they still saying C-diff (plus weakened immune system) is to blame?
Dee, I'm so sorry you've been so sick. It just seems like the flu and other superbugs have been much more virulent recently, even for some who aren't fighting bc mets. Hope you continue to feel better and stronger each day.
And awwwww, what a sweet kitty pix, Terre! Mama looks very serene and beautiful for having just given birth. Glad you're enjoying the volunteering!
(((Hugs))) to all, Deanna
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Terre, just saw this on FB and thought of you!
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Now that's a kitty! Thanks for posting it!
Patty and Linda - great news on no progression!!!!! Whoo hoo for you two! (that rhymes ... I'm a genius).
Sorry your tummy is still messed up, though Patty. Hope they figure it out soon. Was going to type "get to the bottom of it" but decided that was in poor taste.
Dee, hope you're feeling better today and getting over the flu.
As you may have guessed, I'm at my witty best this morning. While my volunteering helps the kitten inn a bit, it helps me a lot more than it helps them. And I think Thursday is the perfect day for me to do it because by the end of the week, I'm getting tired, burned out, etc. So this completely energises me and gives me something to smile about.
Hugs to all,
Terre
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