Bone Mets Thread
Comments
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Annie, what do your docs think of Neurontin for your pain? You will likely tolerate that better, and from what I understand it helps with pain. Can't prove it by me,but I keep taking it. Who knows how my pain would be without it? LOL A shrink prescribed it to help me sleep. It doesn't do that either, but I stayed on it for the possible pain benefit. Some people have been really helped by it.
Christine, you have to do something about a support system for yourself. And I do love it here, but especially with you being so young, you need to be around people. It makes a real difference in my state of mind when I do. The pain may still come. Good Lord it was horrible after I left a group of friends I had lunch with yesterday. But that pain would have come nonetheless, and I don't know how I would have tolerated it. As it was, I was seriously considering calling 911. I have been practically a hermit for much of my life, and I'm telling you, spending time with friends helps soooooooooooooooooooo much.
Remember how I said there's always something: just found a crack in my glasses. Thought it was a smudge. Then thought it was a hair (my hair is growing back but not that long yet), and now I see it is a crack. You can't feel the crack on either side, so I must assume it is on the inside of the glass, which I suspect makes it less stable. I don't know, but I see new glasses in my near future.
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Dune, so happy to hear from you, your absence is always noticed! You bring so much to all of us here. So that brown spot on your finger that came up suddenly is strange indeed, looks like a birth mark I have on my wrist. Let us know what you find out. Your bird is so cute, is that Dusty or Soebe? I will ask my doctor about Neurontin, never heard of it. I need something I can tolerate, Celebrex was helping my pain but now my stomach is in turmoil. I did good with it for a few months, maybe the cumulative effects got to be too much. Sorry about the crack in your glasses but that's a good reason for a new pair
. Sleep well tonight, sending hugs to you, Annie0 -
- I'm so glad to have heard from you Dune. I am new, but notice when someone is missing. Perhaps the spot on your finger is a popped blood vessel. I have seen it on my grandfather, but he he knocked his arm pretty hard. Idk. Always. Mystery.im just glad to see that your wbc's came up and you are continuing treatment! While you were out I started tamoxafin and get my first zometa infusion on Monday.
Annie, I hope your tummy stuff gets resolved quick! Who needs that on top of everything else
0 - I'm so glad to have heard from you Dune. I am new, but notice when someone is missing. Perhaps the spot on your finger is a popped blood vessel. I have seen it on my grandfather, but he he knocked his arm pretty hard. Idk. Always. Mystery.im just glad to see that your wbc's came up and you are continuing treatment! While you were out I started tamoxafin and get my first zometa infusion on Monday.
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Geeze Dune! As Gilda Radner said, it's always something. I'm so sorry you're having such a rough time. Bad enough to have a crap week and pain, and then mystery spots, and now broken glasses. Just sucks! But I'm glad you got to see friends. And I'm glad you posted - your posts always make me smile. And, compared to what you're going through, a bit of (as my husband calls it) Bombay bum is nothing to complain about. Just makes the hour long train trip to work a bit tricky sometimes. I think I'm full of crap too; hence the trots. Sending you tons of hugs and get well soon thoughts. Are you done with chemo?
And, in the TMI category, speaking of bowel issues, I did manage to get a poo sample to the lab this morning when I went to do my blood tests. And I didn't drop anything so this one was cat hair free.
It was disgusting, but it was funny. My husband suggested I add glitter to this one since I had cat hair in the last one. He does keep me laughing despite not being horribly supportive.Annie - geeze! Sorry your tummy is so off. I'm kind of wondering if the Celebrex is what's causing my issues. I guess we'll see...9 vials of blood and a poo sample later... Hope you find something that works and clears up your problems.
Had tumour marker blood work done today, along with a bunch of other stuff. My fatigue level has been amazing lately; not enough sleep in the world. Almost like the first couple of weeks of Stage I radiation - that tired all the time. So the GP is looking at everything - liver, thyroid, kidneys, tumour markers, etc. Should have results Friday or Monday. As I mentioned, I may have giardia from our tank water, so that may explain the fatigue. Hoping it's that. Have switched us and the cats to bottled water for everything we drink. Still using tank water for the dishes, but the dishwasher gets the water temp up enough to kill stuff. And we put everything through the dishwasher now; no hand washing.
Looking forward to summer; I'm totally over winter. It's been a bizarre winter; quite cold and lots of rain. And it's just gone on and on and on. There's fresh snow on the mountains from Monday's storm; it was 5 degrees C in Wellington Monday morning but felt like -2 C due to wind chill. Yes, I am whinging. But I'm just sick of being cold and wet.
On a happy note, less than 8 weeks to our move into our house! I must be mad; 60 years old, Stage IV cancer and buying a house. Oh well!
Hugs to all,
Terre
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Terre,
You are not mad! I think it's wonderful. BTW, please send that rain to California. We are deep into an awful drought. Our rainy season begins in October and it had better be a good one.0 -
terre--really feel for you with the tummy issues. Are they going to check for c-diff as well? I am sure you are exhausted. Maybe some extra iv fluids might help. When protein, sodium, potassium levels are off...can make you feel awful--run over by a bus tired. Let us know what you find out! I did like the glitter suggestion by dh
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Thanks Kjones!
I think they're checking potassium, etc, levels. Will let you know what they say. And yes, not enough sleep in the world for me. Which is unhelpful when I catch the train at 6:30 am and get home about 7 pm. At least I can usually sleep on the train.Caryn, would love to send you the rain, along with sending it to the horrific fires in CA and the Pacific Northwest.
On another note, I'm asking that you all consider liking the Facebook page (link below) and sharing it with your friends. Karen Louisa passed away from Stage IV BC 5 months ago. Her father works in the same building as I do. He wears a pink ribbon lapel pin (a metal one) every day. Yes, I know, I know..pink. Anyway, I asked him about it and he said he lost his daughter to BC and he wears it in the hope the people will mention it or comment on it. He teared up when he talked about her and said "she was the bravest person I have ever known." In my opinion, he is brave - willing to talk about MBC with no "think pink" BS. He is so passionate when he says "We MUST find a cure; this is a disgrace!" I'm not asking anyone to contribute money, etc., but please help spread the word about this lovely woman, her amazing father, and Stage IV BC. Thanks!
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Terre will definitely check out the Facebook page. Lucky you summer around the bend, spring is the absolute best. I'm facing a Canadian winter here. Also not mad to move into a new place. I'm moving around like crazy and I have a bunch of critters in tough and two teenagers change is good sometimes.
Dune I'm so glad to read your posts again. You are so amazing and strong you give me hope every time I read your comments. So what did the spot on your hand turn out to be? The body always keeps us guessing eh?
Annie I'm hoping that all your stomache issues get resolved quickly we have stuff to do and feeling crappy isn't one of them.
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It's a beautiful day for the first day of Autumn on the Middle East Coast of the not-so United States. There's a pastel blue sky with with occasional white puffs of clouds. I hope I remember to take a picture on my eay home. Out here in Westminster it's less developed, still some farms. Unfortunately the highway home is pretty high-speed and the yuppie drivers not so considerate, but I will look for an opportunity to pull over.
I don't know what the spot is yet but it may have gotten darker. I'll call the dermatologist when I get home, which will be after I check out a local optometry place to see what they have to offer. I prefer to shop local when possible.
Terre, I'll check out that page for sure, and do feel good soon. Spring will help.
Chelle, is the Zometa infusion unpleasant. It sounds like it is. Is that for strengthening bones? How often do you have to get it? Is it the one that is more tolerable when given slowly?
I'm not sure what Celebrex is for. I assume arthritis. Neurontin helps nerve pain. If there is any way your doc thinks it might help, give it a try. I don't have to take it with food. It causes no stomach upset. I've been taking it since 2012.
Thanks for thinking of me and all the welcome backs. Now we need Patty and Carly back. Anyone else?
Love you all very much.
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I don't remember if I replied about the bird. He's Dusty and he's been through hell the past couple of weeks. I thought I was going to lose him or he would lose his leg. Something went wrong while the vet was removing his band. The Jewish holidays came in after I could see there was a problem, so he said I needed a certain antiflammatory and had me call around to a bunch of pharmacies looking for it. Nope. So finally I could pick it up from a tech there. Stinky stuff. OMG! Still we used it and some swelling did go down. Later in the week I could see it wasn't doing anything anymore, so I started washing (light squirting) his leg with antibacterial soap and water. That's when I got a better look at it. He was cut and infected. So then I had to wait until after Yom Kippur I think for fim to see Dusty. That just happened to be the most painful evenings of my life. I could feel my bones. I felt like a skeleton from ribs to knees. The pain and the bone was all there was. Still. Had to get Dusty examined. I cried in pain at the vet's. Finally the doc admitted it was a thermal burn caused by the procedure. He wouldn't admit that it was infected but gave me an antibiotic, which I believed he needed. You could tell he was feeling better after the first dose. Took him down in the morning for the second dose. He ran across the wicker fruit bowl to my mother and her orange and proceded to bleed like no bird should bleed all over the place. It took a while but I finally got it stopped with styptic powder. Then I had to give him his medicine.Then I had to go to treatment all day, not knowing if he opened it back up and would be bled out by the time I got home. He's pretty good now. I'm not his favorite person but we'll work it out in his time.
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has anyone been treated with Revolade for low platelets
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Bosco, I think I was given that once. I didn't feel any problems with it.
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Just found out result of my MRI & CT Scan today which showed diffuse mets in my rib, sternum ,spine, and pelvis. I will start chemo next Wednesday and will consist of taxotere, perjeta and Herceptin. Scared and stressed but know I have to be strong and fight. Any advice on how to handle all of this.
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Dune, I hope your precious little bird is on the mend. I feel so badly when our little critters are sick or injured and we're helpless to do anything about it until we can get them to the vet, let alone when we, their owners are also sick. I am happy he seems to be better. I hope you too are getting stronger and able to enjoy the holidays.
Amy
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wleeky, I'm sorry to hear about your mets. Have you had chemo in the past? I am guessing no, since I don't see any listed in your bio. I've had Taxotere with Cytoxan and while both were doable, their side-effects were cumulative but they took care of all my bone mets. Of course everyone responds to treatment and SE differently, there is no reason you need to suffer in silence. You'll be given plenty of pre-chemo meds to prevent or minimize a possible allergic reaction and side-effects. I found it helpful to keep a diary of the infusions, length of time for each, how I felt after each and for several days following treatment, until the next. Drink tons of water to flush the chemo out of your system as soon as possible. Some of the drugs can damage your kidneys and bladder - that would not be good. There's also many great threads here for ladies starting chemo now or those who have gone through what you'll be going through. I'd read up on as many as you can. Also, if you find you cannot sleep or are having severe anxiety, don't hesitate to ask your onc for meds to get you through this.
Lastly, know that bones mets are not the end of the world. Many many women and men here live good long lives with bone mets...count me as one of them.
Good luck and keep us posted on how you're doing.
PS - maybe you want a second opinion on the treatment plan for peace of mind?
Amy
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Dune, poor little Dusty. Is he doing better this evening? Birds are wonderful pets! They have so much personality. You just need to take the time with them, and they are splendid companions! I haven't started the zometa yet. My first infusion is on Monday. Not real excited about it. Supposed to cause flu like symptoms for a few days following. I plan on staying hydrated and watching Netflix thru Wednesday. I'm sorry to hear you have so much pain! Are you taking pain meds? I'm sure that that was a stupid question. I'm just hoping that there is something that will work. You are in my thoughts often! New England must be so beautiful in the fall. I have always wanted to visit. The pictures are spectacular. Colorado is of course beautiful, but I see it all of the time. I would like to know what real New England clam chowder tastes like! Mmm fresh clams!!
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AmyQ thanks so much for the prompt reply. I have updated my treatment plan several times and realized I need to make them public, I did have chemo January 16, 2013, I started with carboplatin, taxotere, and Herceptin. I am Her2+. My Onc is starting me next week with taxotere, perjeta and Herceptin for the bone mets. I trust my onc and felt I would give it a try. Will not hesitate to get a second opinion if I feel it is time (thanks for the advice). I felt when I was told I had bone mets it was the end of the line. Your comment has uplifted me so much. I have been on this site since my initial diagnosis and just started posting. I feel so lost and afraid. Thanks so much for your help.
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AmyQ thanks so much for the prompt reply. I have updated my treatment plan several times and realized I need to make them public, I did have chemo January 16, 2013, I started with carboplatin, taxotere, and Herceptin. I am Her2+. My Onc is starting me next week with taxotere, perjeta and Herceptin for the bone mets. I trust my onc and felt I would give it a try. Will not hesitate to get a second opinion if I feel it is time (thanks for the advice). I felt when I was told I had bone mets it was the end of the line. Your comment has uplifted me so much. I have been on this site since my initial diagnosis and just started posting. Thanks so much for your help.
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Thanks for all the good wishes. My MRI didn't show any progression so if I'm still having considerable pain in 2 weeks we will do radiation to a couple of spots . I'm planning a trip to see my sister and will try not to think about cancer while I'm on my trip. Hope all have a pain free evening. Marilyn
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Dune - hope you and Dusty are both better today! How awful for both of you!
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Congratulations so glad your MRI didn't show any progression. I see you live in Stamping Ground, I am close to you in Lexington. I sent you a PM,
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Congrats, Marilyn!!
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Dune, poor Dusty, I sure hope he was better today. Did you get to a dermatologist to find out about that spot?
wleeky1952, welcome but so sorry you have reason to be here. Prayers for a successful treatment plan. You will find a great group of women here with a wealth of knowledge and understanding.
Marilyn, yay to no progression! The radiation does help alot should you consider to do it.
Well I started back on the Celebrex today after being off of it for a few days and yup my troubles are returning. I took the double dose of stomach meds but I'm sure it will take a few days to see if that will help. I'm giving this a week and if I don't feel better I think I'll have to go off of it. Makes me sad really because it was really starting to work for my pain.
Hugs to all, Annie
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AmyQ, I just got to thinking, wasn't it scan day for you today? If so prayers and positive thoughts for good results!
Terre, how's your stomach feeling today? Will you have results by the end of the week?
Linda, are you having gorgeous weather in Quebec too like we are here? Omg it has been an amazing week of warm sunny weather, can't get enough of this! Heading to St. Jacobs market early in the morning so I need to get to bed. Can't wait to see all the neat stuff.
Hugs to all, Annie
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Annie, yes the weather is absolutely beautiful here as well. Sorry the double Pantoloc is not doing the job (yet?).
Marilyn - WOOHOO on stable! Good luck with rads should you decide to have them. Enjoy your trip.
wleeky - a warm welcome to you. Lots of info, knowledge, support on this thread. Compassion and humour as well. Best wishes with your tx plan.
Sending healing vibes to cute little Dusty and to its courageous owner of course!
Sweet dreams to all.
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Annie
Yes scan day, blood draws and xgeva so now the waiting game. Thanks for checking in. Of course I'll update as soon as I hear.
Hugs to all you dear ladies and for those who are in pain or suffering I hope our Pope can perform a few miracles while he's visiting the U.S.
Amy
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Good morning all
congrats on no progression Marilyn
Amy best wishes for your results
Wleeky wishing you an easful tx
Annie sorry you are having so many issue with the celebrex and your stomach
Dune hope you are feeling better and Dusty too. Those are sweet pictures
Cjanet how are you today?
LindaE i think I missed what ultimately was the result of your scans? how is the cough?
I know I am missing things and I am sorry. I am under a very dark cloud today. I have the MRI tomorrow, so answers will be had, but what was the occasional jolt of nerve pain in my left hip became a full on spasm and almost unable to walk from yesterday afternoon. I am in no pain sitting or sleeping. Just if I 'step a little off' then the whole things flares. I am so scared and angry about this..... I feel like a baby and I am praying this pain is just the meds shrinking stuff..... but would it create such nerve pain and hurt to put weight on it at times? I welcome any input or insight....
Feeling sad.
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gaia0132, we're here for you and sending you gentle cyberhugs
We are so sorry that you are in such nerve pain. Have you discussed this with your doctor? Sit in the sun, put on nice music, talk to all of us (-: to keep you relaxed. Please let us know how the MRI goes as well. Hang in there! xo
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gaia
Wishing you the best. My now chronic hip pain started with a very similar story to yours. I had a weekend in which I could not bare weight. on the left side. My MO quickly ordered an MRI resulting dx bursitis. I wish for you the same!
Off to take my son to school. Wishing everyone a beautiful Thursday.
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Good morning all,
Gaia - Crappy pain! I can understand the dark cloud. But the good thing is you will have answers after your MRI. I have no insight other than when I was on Tamox, I had a lot of pain in my hips and knees. When are you seeing your Onc? Tell him/her all your symptoms. In the meantime, be kind to yourself, take pain meds, rest and remember, we are here with you. I will get my results on 5 Oct. My cough is practically gone, thank you for asking.
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