Bone Mets Thread
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Hi all,
Patty - sorry you're sore today. Take it easy and rest! You too, Dune!
With regard to moving - if you can afford to have someone pack and move you, it's not so bad. Also, hire someone to come in and clean. When I've had my stuff packed for me, I did some of my own packing, with critical items (like clothes, meds, etc) set aside. I also put bedding in boxes labelled "open first". That way, when unpacking time came, you could be a bit selective and take your time. Another trick if someone is packing you is to set aside a room (like a bathroom) and tell the movers not to enter or pack anything in it. That's where you stash the stuff you'll need immediately. That said, it's tiring. No question there.
With regard to decision making - I find that this is one of the hardest parts of this disease. I feel like I'm mentally wringing my hands all the time. Should I? Shouldn't I? etc. I'm trying to be bold and optimistic. Easier said than done.
And on a good news front:
http://www.sciencealert.com/new-blood-test-can-predict-breast-cancer-five-years-before-it-develops
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I have that decision making problem too, Kiwi. Seems the AIs affect an area in the brain by starving the receptors of estrogen. I believe it's executive function that is affected and it really hoses your ability to make decisions. I've never been so darn wish you washy in my life's!
Thanks for the article. The blood test sounds promising. Knowing before could be invaluable. I was just a little perturbed by the early detection equals cure part of the article. What they don't say, is the 93-100% cure rate when caught early is a 5 yr survival rate. Soooooo many women recurr beyond the 5 yr mark bring that early detection cure rate down to 70-75%. I really think longer time frames should be used when talking about breast cancer. Most of us want to live a lot longer than 5 years, but all these articles are fine saying you are cured, even if you die at 5 years and 1 month. Sorry for the rant. I just get tired of all the manipulation of the stats.
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Dune!!! It was probably a Decepticon reaching down, or up, your shirt!! I'm sure you know how nasty they are!!! I was at grandsons's school today...fighting ninjas that show up at every recess!
Patty..holy smokes...crappy thyroids run in my family (lucky me...great thyroid!). My 2sisters have been on meds...one is having a parathyroid removed. Seriously, they all get a kick outta the fact that I'm stage 4 & can run circles around them..they have a multitude of problems: bp/swelling/itching/fatigue/etc, to the extreme. I agree w/Deanna, an endocrinologist is necessary! Three drs missed my sister's parathyroid until a ct for uterine cancer showed a benign tumor. Hope the news of good scans is confirmed soon!!!
Myra...every time someone says I need to do something to "divert my thoughts away from cancer"...I want to cry...just reading that someone said a move might help you focus on something else besides bc, it made me tear up. It's easy to remove yourself from a difficult situation...but you can't live an out of body experience for long! Thinking of you!
So much good info here, thanks to all, I still wonder about my aching ribs! But, I notice it after a different activity...now it's swimming. I'm limited from so many activities I'd always done thanks to diep problems (am I a broken record on the subject...HA..is that a tired cliche???), so my core muscles are crying, I'm sure!
Also, something that's bothered me for a while-when I started femara this time (took after 1st & 2nd dx...started after 3rd dx chemo ended 10/14) the pharmacy told me to make sure not to take my calcium supp (citracal) w/femara as one could cancel out the other. No one told me that before....and I always took them together. Did that help critter cells grow?
Romansma & Kiwi...my favorite saying, "I can't make a decision to save my life". AND...I want my 5 years to start after my 3rd dx!!!
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Hi Ronniekay. No one ever told me about the femara/calcium correlation. I have to take it all spaced apart or my stomach goes wacky. I agree about taking my mind off BC. These are good friends who are searching for ways to help me cope with my dx. There is no taking your mind off this disease, it stares you in the face every day. I have finally started standing up for myself and checking things out before jumping ahead. Not being able to decide makes it worse! Myr
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This is the first I could get to the internet to tell you all. It metastasized to the lungs now. They are going to put me on taxol right after I get a port. Needless to say, I've been feeling down, but we had people to meet for dinner. I tried to be present but I'm sure you all know that feeling of sitting around with other people wanting to scream that it spread to my lungs now -- or wherever it spread. There's lots of bones and vertebrae and all that good stuff.
They say I may lose a little hair on taxol. Are they telling me the truth?
Gawd I am hurting. Maybe I throw in some extra oxycodone.
Hugs and kisses to my fellow warriors.
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Oh, Dune, I'm so sorry. How long has it been since your last scan? This just seems like it's all happened so quickly. Do you remember anything they told you, like how many lesions they saw? Hopefully, it's very minimal and Taxol will make fast work of them. I could be wrong, but I'm pretty sure you will lose your hair with Taxol -- unless you use Penguin cold caps, which can save your hair. There's a thread or threads elsewhere here about those. (((Hugs))) Deanna
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Ok Dune...I'm sending an army of transformers, ninjas, storm troopers...even decepticons...and they'll be fighting right along with you. You had a feeling you would hear this...wish we could've been there with you
I'm glad you didn't mow the lawn...and time to tell mom. I'm so sorry...but have faith taxol will kick it! Sending love & hope. 0 -
Sending love and hugs your way, Dune. So sorry you're dealing with this. Just breaks my heart.
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Sorry, Dune, that really sucks! I'd be willing to bet the Taxol will beat it back. If I'm remembering right, Diana50 had a progression and went on Taxol. I believe she is stable and maybe even better now. The taxol seemed to really work well. I hope it makes quick work of this new met! Hang in there!
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Dune hope the Taxol works for you, so far it has worked for me, Had a scan after a few weeks of Taxol and the scan showed that he lung mets had shrunken, unfortunately it also made my hair thin so much that I only had wisps of hair sticking up on my head so I shaved it, My doc did say that eventually my hair will come back. As for having a port implanted, speak to your surgeon about where the port is to be implanted so your bra strap won't get in the way. the port makes infusions a lot easier and there isn't much maintenance on your part of taking care of the port. There are a few organizations that have wigs for free.Check out cancercare.org
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Trip to Vegas to go to Serge's House of Showgirl Wigs is in order. Said if I ever lost my hair, slut hair from Serge's would be in order.
Dune - praying Taxol works great for you. Glad you're doing well, NY!
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Oh Dune, I'm sorry to hear you are dealing with progression. Yes, I know that "inner scream" well. Let it out here where we will all listen and nod and hold your hand. I hope Taxol works well for you with minimal SE's. Keep us updated.
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Thank you all for your encouragement and suggestions and especially Ronnie for the army of mutant superheroes she is sending to me. I think it's just in a few spots at both hila and the mediastinum. I'm going to fight it It's easier to say than do, but I'll do better than I have been. I even turned down dessert last night, and there was a page full of chocolate to choose from. I'll get some exercise painting today. Just a ramp to the shed. You all take care, have a great weekend, and love ya.
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Dune so sorry to hear that news. Will be having you in my thoughts and meditations. I hope taxol works for you quickly
Hugs and love, Myra.
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Dune, so sorry to hear about your progression but know that all of us here just love you and are sending you positive energy and healing vibes. I really truly feel the taxol will knock those lung mets back. ((((Hugs)))) Annie
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Oh Dune - I am so very sorry. It sucks! I hope Taxol will kick those buggers quickly. What a shock it must have been for you yesterday. Did you have symptoms? Good luck with the new tx and port.Lots of hugs and love to you - Linda
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dune,
Sorry about the progression. It seems that there's lots of ammo left in the arsenal an I know it's ready to go. Take care
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Love the slut hair, Kiwi. I want showgirl hair! Hope you got to let that inner scream fly at some point last night, Dune. Manual labor always helps me when I'm stressed so get it all out painting. Hang in and do something nice for yourself this weekend!
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dune. Sorry about the progression. Sounds like they have a good game plan already set up. You can do this. Praying it is an easy tx for you and minimal side effects. Not good to hold in that inner scream. I know sometimes we must for a while but it's got to come out in some form. Why not be proactive and try done physical release before it just sills put at the wrong moment. We all know how that feels. So what does your mom know now ? Thinking of you.
I had a major ruff day yesterday and last night. A small I ut better today. Terrible pain in my back and lots if big d. Many msny accidents before u boulder even make it to the potty. - tmi I know - never vomited but was duper hard to hold it back. Was freaking out another hodputal visit which I just won't do. Dh upset of the alternative. I am just exhausted from this. However on the positive dude. Next week I see my go who will refer me for thyroid , I see gi spec snd then fri back to mo for pet redukts which j slewdfy read I. Line but he still wants to see me since j am having such a hard time. He got all over me sbout my weight. Ear something anything just eat. I do eat but the vomiting and big d doesn't keep smh nutrition in my body. So onward and upward. We will figure this out. Thankful it's not progression. SO I'll quit rambling.
Hello and hugs to all
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Dune - so sorry to hear of your progression to the lungs. I remember well how I felt when I learned I had progression to the liver. I was on taxol for 11 months & it did wonders for my liver mets. There are 2 discussion boards on taxol that have a lot of real good information. Some of the ladies have literally been on it for years and going strong. I believe one is called Taxol for Stage IV & the other just taxol (can't look cause I would have to start this post over again). I encourage you to read them - it addresses nail issues, neuropathy, hair, etc. Very informative. If I can be of any assistance, please let me know.
Patti - gee wiz, I hope your thyroid and GI issues get resolved ASAP!! The thyroid has such an effect on the whole body, a major endocrine organ - I agree, see an endocrinologist as well as a gastroenterologist - I have both, including a cardiologist! I need these folks to keep an eye on things and help me with the side effects from chemo - it all helps!
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Ramble away, Patty. I can't believe you are still dealing with this. Can you get an appointment at a big cancer center? I really think a second opinion is needed. You are dealing with toooooo much and NO answers. Feel better today. I hope you can stay out of the hospital, but don't wait too long if it gets worse.
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Dune - check out "Weekly Taxol for Stage IV."
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Patty - not again! Thyroid problems can play a lot of nasty tricks on us. One of my sisters had major problems with it - can't remember what it was, it was about 30 years ago. But I do remember they got it sorted out but it took a while. Congrats on your results - very happy there is no progression! Are you having these problems since you had a "freezing" tx on your spine? Is it still the C-Difficile bug acting up? Asking too many questions...
Well, it's snowing, can you believe that? Melting snow but still... Good excuse for not doing any outside chores...
Linda
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Snowing? Your winter will not stop! No wonder the Canadian snowbirds are not leaving this year. Myra.
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Dune and Patty- Big hugs to you both. Sometimes I marvel at how everyone manages this crap with such grace, except I know there are few alternatives. Don't hesitate to rant here if it helps. We care.
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Patty - damn! bugger! Thyroid is tricky. Wonder if it's contributing to your problems - when one thing gets out of whack, it can throw a lot of stuff out of whack. Sending you big hugs. And I agree with earlier post - see if you can get to a big medical centre if at all possible and tell them to "sort this out now!"
Sending hugs,
Terre
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PattyP, I hope things improve for you soon too. (I hope that you got/get some ice cream soon).
Hello to everyone else and hope you are enjoying your weekend!
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Patty and dune, I don't post often but read all the posts and I just wanted to express my feelings to you. Dune even though news isn't good but at least they're starting you on treatment and will kick this bugger to the curb. Praying and sending ((((hugs)))). Patty, I hope you feel better as well and that the doctors can get at the bottom of this SOON! Ditto on the prayers and hugs.Aurora
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Dune...I love that you're dealing with the news by painting a ramp! You are a go-getter & those mets are gonna be scrambling
. Ugh...Patty...at this point, your poor body must be exhausted. Agreed that some big time specialists need to check you out. Stable...you gotta be livin life, girl!!!0 -
Dune-sorry to hear your news. I did 12 taxol and did lose my hair. It actually started growing back around number 10 but then after the first AC chemo it all came out again BUT now I have the great curly hair I always wanted. This might sound weird, but it was kindof nice to not have go shave my legs all last summer. I mainly wore those lightweight stretchy scarves called buffs. U went to Wal Mart and got one of every one they had. I also didn't miss any work or social activities from the taxol-I felt pretty well the whole time-I just slept a little more than usual. I wish you well.
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