Bone Mets Thread
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Linda E, so sorry to hear about your fall! You are wise to take it easy today, hope you are feeling better soon! Linda Lou, I usually take my Xgeva shot in the back of my arm, quick and easy. I think some ladies here take it in their abdomen, I just don't feel like exposing mine if I don't have too...not a pretty sight! Cjanet, hang in there! Naps are great! 60 isn't too bad for your first CA 27/29, mine was 203, now down to 64 and will be checked again on Tuesday. Hope we all have a pain free holiday weekend
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So sorry about your fall, Linda, but glad the damage wasn't nearly as bad as it could have been. But between that and the sore throat and bad cough, I'm sure you're not feeling very perky today, so sending you plenty of healing thoughts. Hope you feel much better soon.
Cristina, a CA27-29 in the 60's isn't all that bad. And hopefully the lower dose of Ibrance will suit you better.
Well, I'm off to an overdue hair appt. Haven't felt up to it for several weeks, but the talk a few days ago about hair color and appointments got me motivated.
Anyone feel well enough to actually doing something, like get away, this weekend?
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Hey mlb... yep, I'm out and about this weekend. I decided to be brave and do a 4 hour road trip by myself to visit my daughter in college. Probably not the smartest idea since my back has been bothering me so much. But, I came a day early so I could rest up from the driving. I've decided that no matter what I do my back is going to bother me and I'm going to be tired... so out the door I went. It's her first year and I miss having her around so I'm looking forward to some mom/daughter time.
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Hi all,
LindaE - so sorry about your fall! Ouch!
Christina - thanks for the giggle. Let's see..out of Celebrex because I'm disorganised so pain is ok but higher than usual. Chronic trots R us, but stomach flu has abated so nausea is better.
Sorry you're in pain.Lindalou - no fun with migranes, nausea, etc. Hope you get at least some relief and fun in this weekend.
Deanna - hooray @ hair. I need mine done too. So I'll live vicariously through your hair appointment.
Chattykat - road trip! Good for you! Hope your trip and visit go really well.
Rachel - don't have much to add over what others have said; hope you get resolution soon.
Dune, HFC, Patty, Hope, Dee, Amy, 3-16, momallthetime, gaia, Myra, and everyone else - sending good thoughts your way. I am missing responding individually to a lot of you and I'm sorry - no disrespect intended.
The only weekend plans we have are some shopping; need a new toaster and DH wants slippers. So not very exciting, but always fun to go look at housewares.
At the moment, it's 4:30 am and I can't sleep so I let the kittens out and about while I catch up here a bit. They are racing from one end of the house to the other at top speed taking turns chasing each other. This weekend is "special hair gel" (flea treatment) time for the cats, so that's always a bit of excitement. I'd like to do something else and get out and about a bit more, but the weather is supposed to be crap - snow warnings, gale force southerly (south = real cold here, like polar express in the US), rain.
Sending hugs to all,
Terre
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Hi everybody!!
LindaE, hope you recover from your fall quickly, that's not a good thing with bone mets. Every once in a while my infusion knocks me on my butt. They usually give it to me over an 1 1/2 hours, never 1/2 hour, no wonder you're not feeling well.
Lindalou, fingers crossed that this regime will work nicely for you.
Chatty, have fun! And drive carefully. Deanna, picture of the new hairdo maybe?? Cristina, you made me laugh, "poop levels?" ha ha! Terre, insomnia is bad, I feel like such crap the next day. Hope it was only last night. At least you've got kittens to keep you company.
Maybe I've missed some posts, but has Dune, Patty, Annie checked in lately? and I know there's others too, but my brain is still fuzzy from ativan & beer!
I got the results of my bone scan but not sure what it means as it was just a quick email from the MOA "the report says slightly more prominent than the last scan but the change is minimal" Does more prominent mean they're healing? Both of my TM's were within the normal range (first time I've ever been called "normal")
No plans for us this long weekend. We live on a small island that is a huge tourist destination & going anywhere including the grocery store or especially a restaurant is out of the question on a long weekend. So DH (affectionately called Pencil Boy) & I will be staying close to home, I'll be in the garden, he'll be building me something! yay! Take care everyone, have a good weekend.
Cheers! Dee
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This is for all of us still having SEs from Zometa, well after the first infusion. Ask the nurse to slow down your infusion rate to 45 minutes. I know you can push Zometa in a 15 minute infusion, but that gives me bone aches and fever. Slowing it down really helped.
Also, hydrate! Drink a lot the day before and the day of. I know you'll be running to the restroom frequently, but so worth it. Sweet talk your nurse into hanging the big bag of fluid along with the infusion. Since I get accessed for the blood work (creatinine check), they start me on the fluids while waiting for labs.
These two steps have kept me on the Zometa. For some reason, my Onc prefers it to Xgeva. I haven't really asked him to detail why, as the Zometa is working out.
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Lindalou
I'm also switching from Zometa to Xgeva. My onc thinks Zometa may have been the cause of my plummeting platelets over the last few months. We'll see. First shot will be 14 Sept
Hope everyone has a good weekend. I'm off to watch the cricket
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cjanet. I am so glad the nap helped I am heading for one in a few minutes. My name is Mary. I am a little paranoid about privacy and social media as I have worked as a social worker in the past and always wanted such clear lines between work and home. But I do really feel comfortable revealing my first name here. So probably will sign posts Mary as it likely easier than all those numbers. Thanks for asking.
Lindalou and blainejenni I too have SE from Zometta, sometimes worse than others. I know if I forget to hydrate I will be in trouble , I do like everything I have read about zometta so I want to hang in there with it.
Chattykat I just had a solo trip to. visit my daughter at college three hours a way. It was such a blast, well worth the hip pain the drive cost.
dlb I hope my weekend includes painting as I am having a bathroom redone and want the work to progress enough my husband and I will get to paint. Though dh says "I might want to do. it the easy way-all by myself".
Enjoy the weekend everyone
Mary
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My new bathroom tile. I am so excited.
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Beautiful tile!
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Your new tile looks great, Mary! What color paint are you doing?
I feel like a new woman after my much overdo hair appt. My stylist is a hoot, and always makes me laugh.
So I just checked on-line and although my TMs went up just a bit (307 vs. 298 over a one month period), I'm not disappointed because last time they had gone up 50 pts. in two weeks, and the time before that they went up over 100 pts. in two months. So hopefully these new meds are slowing things down.
Have a great weekend, everyone. Chatty, great that you could drive 4 hrs. to visit your daughter! Enjoy!!! Deanna
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LindaE- so sorry you hurt yourself. I know someone that her hip was weak and that is the reason she fell, NOT TO scare you but could it be the same case for you? Thank you for the idea with the biopsy, yes, anything would be better than just waiting blindly. Someone actually just suggested a gastro, i will look into it. She is ER+PR+HER2+ But unfortunately, she was already on e/t, and Kadcyla was really a big hope b4 clinical trials. She is not too thrilled right now. Thanks so much for your helpful ideas and support.
Cristina, first I must comment on your adorable family, so cute and you are quite a gal for taking care of the insurance. What a herroine! My daughter has her TM's taken only from time to time, Onco claims they are not accurate, i put all her BT's results on an Excel spread sheet, month on top and then each blood test, and the way i see it is quite accurate. the same ones that you took. but yes, taking it regularly could be helpful.
Deena wow you have had a rough time, so sorry. You are so special i hope you feel better soon! Is GuardantHealth the same as F1? Because she had that done in Dec. and it kinda gave her only 3 options and she used it up already!! I will look into other threads. I did get in touch in another site, and there are some with the same experience, you know how it goes for some it helps for some not, they are of great help and support. It's on Inspire.com I love it that you went to do your hair!
3--6-2011 you are so right, I don't trust ONCo anymore. I was never a big fan, i liked how Dani was able to relate to her, but, she never explains or discuss treatments, and was belligerent when I asked her about how an we look into that new nodule that keeps progressing, attitude!!! And, there are too many other little things that I have been looking away, I really could use some new blood, no pun intended!. I am working on it, you could be sure.
Hugs and best wishes to all
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New to the bone mets thread, at this point waiting on an appointment at Carbone Cancer Center in Madison.For a second opinion I had early breast cancer 3 years ago, did chemo, had my ovaries taken, have taken my arimidex every day and I'm still her, have 2 spots L2 vertebrae which I had veryoplasty (sure if spelled that wrong) monday. And on my right hip. So just could use a bit of support,
Amie
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Hello everyone,
Linda, I'm so sorry to hear about your fall, thank God you didn't seriously injure something. Between that, your accelerated infusion, and your sore throat I hope you're just having a restful weekend.
Cristina, I hope you were able to enjoy your company without too much pain.
Lindalou, wishing you the best on Xgeva, praying for no side effects. My nurse said the abdomen is the best spot.
Deanna, I hope you enjoyed having your hair done today, it's my favorite thing to do. It sounds like your treatment is working according to your tm's.
Mary, love the bathroom tiles!
Dee, I'm here just been busy having some fun with dd's on their days off.
Momallthetime, thinking of you and Dani and praying you get some of the answers you're looking for.
Keetmom, welcome but sorry you have reason to be here, sometimes in spite of everything we do it still comes back. Mine was stage 1 and recurred in 2 years, not what I was expecting. You'll find a great deal of support here. What is your treatment plan?
I just came back from an animal rescue ranch and I need to shower because, well I smell! I shall post some pictures later on.
Hugs to all, Annie
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Amie, welcome..lots of support here! When I came here, I read the entire thread and learned so much. I see you are awaiting a second opinion which is always a good thing. What treatment did your first opinion recommend? I am on Femara, Ibrance, and Xgeva. My onc is very optimistic and says there are many treatments available. Once you have your treatment plan worked out, you will feel much better, I know I did. Hang in there, you are not alone here
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Keetmom- So glad you found us and welcome as you will find wonderful support here. I have been to Carbone many many times and got my second opinion there. The oncologist ( a female) was very good and listened to me. I also know a great surgeon who is associated with Carbone who specializes in tumors of the spine. He is kind and incredibly compassionate and has been seeing me for 3 years. There is also a physician at Carbone who does RFA, and other procedures of the spine. Who did your vertebroplasty? How are you feeling from that? Please PM me and I will give you all of their names. I've had very good experiences with all of the doctors there. I can also give you my email and tell you a lot more. For now, take a breath and know that you are in very good hands at Carbone. I will help you all I can. LInda
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I think he said Xeloda, I'm on arimidex he didn't know if he would switch that or not.
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Chattykat, wow a 4 hour drive by yourself, good for you being brave enough to do it, there's nothing better than mom/daughter time. I hope you have a wonderful time.
Terre, I hope you have a great weekend. Shopping is always fun! It sounds like your kittens are a hoot. Any recent pictures?
Dee, which areas were more prominent on the bone scan? By any chance is it some of the areas you just had radiated? There's probably still some inflammation there from the rads, same thing happened to me.
Keetmom, if it is Xeloda that your onc puts you on there is a thread called All about Xeloda which would be very helpful. Sounds like Lindalou will be able to give you some valuable information.
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How are people's pain levels today? Nausea levels? Poop levels? Etc.
My pain level has been atrocious. I wanted to take some more oxycodone but I have been getting pretty loopy with that stuff. I'm so glad it is bed time.
I only had one incident of nausea, and I'm pretty sure the hot prune juice and lemonade did not like each other.
Poop is a pain. That's all I can say to that.
Thanks for asking. LOL
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blainejenn, younare so,right about zometa. They started longer infusions awhile back for me. Made a big difference. Last time was paying attention, I wa knitting...got cast on did 2 rows and the zometa was in. 15 minute push. I really suffered for 5 days. After 4 years I guess you still,have to,pay attention....lo
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Amie, sorry you had to join us but there are a lot of great women here and lots of love and support!
My pain is better, but I think it's because my ENT put me on a medrol dose pack for chronic sinusitis and fluid in both ears. If it helps the pain too I'll take it!!
Getting ready to go on vacation next Tuesday for 2 weeks, can't wait!!
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Annie, not sure if it's the radiated areas or not, I didn't get the report, just a quick synopsis. I will find out on the 15th. Beautiful picture of your daughter.
Dune, good to see you, I wish you were able to get some relief from the pain.
So tired must go to bed, goodnight all! Cheers, Dee
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Good morning all,
Amie - a warm welcome to you on this thread. Glad you found us but sorry for the reasons that bring you here.
Still feeling crappy from infusion and muscles hurting from the fall. Susan3 - 15 minutes! Lesson learned, I will check from now on. Can't stop coughing although not sure it's infusion related? Now my urine burns when I pee.
Mommalthetime - Hoping it's not my good hip - scans will tell in mid-September.
Too tired to address individually but wishing you all a nice Saturday. Going to put some ice on my ankle followed by Arnica.
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Good morning all, have been reading the thread, but no time to write. Still trying to catch up on work since our trip.
LindaE, so sorry about your fall. Sounds like your infusion did quite a job on you. Keep hydrating and get that stuff through your body as fast as you can.
Cristina, beautiful family. I think I told you I grew up in West Orange. Very nice area to live.
Dune, thanks for the info, and I hope you feel better soon.
Amie, welcome.
Deanna, there is nothing like a day of pampering to boost your spirits. I try to schedule a mani/pedi on my best WBC days.
Good day to all and hugs to all I missed. Couldn't look back w/o losing everything. Myra.
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Good morning ladies,
Hubby off to Home Depot with both kids as they do a workshop once a month to build something w kids. Afterwards I asked we all go to a nursery and pick out some fall flowers. May try to get to the pool one last time today but don't think it's happening.
I have friends coming over tonight 5 pm. Just doing take out or they are bringing food.. Will be nice to catch up.
Everyone have a nice day and LindaE please feel better!
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Happy Labor Day to all!
Deanna and all who are on Ibrance treatment, I encountered this product yesterday and purchased it. Do not know how to add a picture of it, but found it is also sold on Amazon. Here is the link: http://www.amazon.com/Pumpkin-Seed-Powder-Oregon-Organic . Probably you already knew. Just in case. It is pure organic pumpkin seeds powder, has quite much amino acid and magnesium. So it is good for both blood and bones. It is also supposed to help sleep. I tasted some, although no way to prove anything, it tastes good. There are quite several pumpkin seeds powder products to choose on Amazon. I just happened to have this kind with me.
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Good morning to everyone just hanging out this weekend!
Xavo, thank you, thank you for the tip on pumpkin seed powder! I will first check my best local nutrition store and hope I might nab some today. Otherwise, I'll do Amazon.
Cristina ~ great that you feel well enough to have friends over! And love the idea of picking up some fall flowers. It's still very hot here, but probably cooled off just enough that I might follow your lead and ask DH to get something to liven up the brown that surrounds us, thanks to severe drought and water restrictions. There are billboards that say, Brown Is The New Green, but I don't think so.
Myra, I think we can all agree on pampering being great medicine! A mani-pedi are next on my list, but yes, when counts are higher. It will be nice to change to a fall-ish nail color, like the mulberry color lipstick I picked up a few days ago.
So I have a question on pain... Thankfully, my rib and upper hip pain are almost non-existent. (YaY!) But for the past two or three days I have been dealing with a stabbing, nerve-like pain in my right inner/lower shoulder blade area that varies from a 5 to a 10+ (in tears last night before I reluctantly popped my third pain med for the day). I can't tell if it's actually in the shoulder blade or maybe coming from a disc, where there is some soreness and sensitivity to touch. So my questions are... Has anyone had this? How can I tell if it's inflammation or something else, and how can I tell if I should be using heat or not? It's been so bad at times, the ER crossed my mind, but no way I'm going near there with low counts. My pain has jumped around and come and gone so much in the past few weeks, I can no longer guess what's a pain flare (which I'm hoping this could be) or damage from a serious vertebrae deterioration that needs medical intervention. Shoot. I am so tired of this. I would actually feel pretty good today if it wasn't for this one specific pain.
Xavo ~ Editing to ask.. Why not just eat pumpkin seeds? Is the powder suppose to be more effective? I have pumpkin seeds on hand and actually just ate some. I wonder if that's as good?
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Good question, Deanna. I guess should be the same. The only difference I think, logically, is in the form of powder the pumpkin seeds could be mixed with all sorts of stuff, so easier to take a lot. Here is how the pumpkin seeds, powder or not, helps sleeping:
"Pumpkin seeds and the powder from pumpkin seeds have relatively high amounts of the amino acid tryptophan. Tryptophan is the amino acid the body uses to make the feel-good and relaxation neurotransmitter serotonin. Pumpkin seeds also contain high amounts of zinc, which can help the brain convert tryptophan into serotonin. Serotonin levels are typically low in people who cannot stay asleep and wake throughout the night. It is best to the powder with applesauce or another healthy carbohydrate; the carbohydrate allows the tryptophan to get into the brain in higher amounts. -- By Pina LoGiudice ND, LAc and Peter Bongiorno ND, LAc Directors of Inner Source Health" (from http://www.seedoilcompany.com/pumpkin-seed-protein-powde).
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Amie - welcome to the thread. Sending hugs and good thoughts.
Myra - welcome back!
Deanna - damn....can you call your MO? My shoulders hurt, but it's arthritis pain, so I can't give any advice. But your spine is nothing to mess with - you know that. If you can't get into your MO, can you at least see your GP or someone?
It breaks my heart to read of everyone dealing with so much pain. Wish I could wish it all away for everyone.
LindaE - can't imagine a 15 min. infusion. I was getting 3 hour infusions (before I developed ONJ) and was sick for days from that.
Dee - sending good thoughts for your upcoming appointment and hoping everything that glows is showing healing bones.
TerriJ - wishing you a great vacation and glad your pain is better!
Dune - sorry you're hurting so much.
Sending hugs and positive thoughts to all,
Terre
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Deanna - can you contact your Onc's office over the week-end? If not, listen to your inner voice and go to the ER (take precautions such as wearing a mask). Sudden sharp pain like that should be looked at as soon as possible I would think. Hope you feel better soon. Sending a gentle massage.
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