Bone Mets Thread
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Hi All,
I posted about a month ago that I went slightly crazy and indulged myself with two baby guinea pigs. Well they have settled in and not as camera shy as before, so let me introduce Skunky & Squeeky. Naming rights went to my 6 & 4 year old grandchildren. I am enjoying their company and actually don't mind all the cage cleaning. They're funny little critters and do a little dance called "popcorning" for no reason except contentment. Anyway, I am enjoying being a kid again with kid-like pets. I recommend it!
Amy0 -
Hi Screech, I am also from NY. I was diagnosed in June first they thought stage 2 but I asked for a pet scan to make sure what we were dealing with and they found a small met to my right hip. Stage 4 no surgery no longer an option I am trying to get the surgery via a trail I find out October 7 if the computer randomized me into the surgery group. Would you be kind enough to recommend your surgeon and MO. I truly don't get along with mine. He does not listen. His explanation for everything is that he has been doing this for 25 yrs and that just because your. a nurse does not mean that you know about medical oncology and he goes on and on every visit when I ask about whatever medication or treatment that I have read about the last time I just told him that I if I was doing medical oncology for that long I would have found a cure . he has no sensitivity I am fighting for my life I don't have time or the energy to waste on him.
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bobcat-I sent you a PM
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Hi all,
I am so far behind, but wanted to pop in and thank Chatty for posting the NY times article; it's just great! I hadn't seen it before and it's wonderful.
And Amy - what cute babies!!!
Annie - get your heart checked. Celebrex can cause heart problems; I get monitored closely for that. And a heart attack does not always involved neck, arm, numbness, etc. It can just be nausea and cold sweats. So please ask them to look at it. Also, I take the stuff that's marketed in the US as prilosec twice a day (prescription) and it helps.
HFC - so glad things are better.
Lindalou - sending good thoughts to you and you DH. At least you understand scanxiety. I think men have it harder sometimes because they don't have the support that many women do.
Linda - glad your cough is better. This flu is (as my grandma would say) a witch with a capital B.
Dune - hope your blood count goes up. So sorry you're going through this.
Hugs to all...sorry not to address everyone.
Terre
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ChelleG I hear you and I was there myself not long ago. I was diagnosed in June so not to long for me either. So after the initial shock wears down a bit and you start to gather some information and find things are not as bleak as one would think. Not to say this doesn't suck the big one it so does. Friends and family are those helper cancer warriorsyou need. I'm so happy you found this thread it will help there are so many wonderful woman with wonderful stories.
I hate repeating myself but I hung onto Kris Carrs movie in a big way. Crazy sexy cancer check it out on you tube. Gather some positive information and keep that formost in your mind. I am sending you a big hug.
Wendy
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Hello to all,
Deanna yes I'm still taking Celebrex and yes that list of side effects isn't too pleasant. My nurse is coming in the morning so I'll be asking alot of questions. I don't know what is going on but I hate how suddenly this started and how long it is lingering. It's making me crabby and crabby is not my nature. Hopefully I get some answers tomorrow. I also have a doctor that is part of my palliative care team that will make house calls so if she feels that's necessary I'm sure she'll set it up.
Lindalou, your dh is definitely in my prayers tonight, I can totally understand how he's feeling. It's so much harder for men I think because they tend to keep more to themselves where us women dicsuss everything with each other.
Chattykat, thanks for reposting that article, it's always nice to read such encouraging stories.
Bluefrog76, your post resonated with me. That's exactly how I feel and I had this conversation with my husband when I was diagnosed. He asked if I had a bucket list and my response was no, I just want my ordinary life back. I loved just being carefree and doing all the everyday things that brought me joy, coffee with a friend, family dinners, a walk with my daughters. I didn't even mind house cleaning and laundry because I was physically able to do it, now it's a struggle. I miss so many simple things, yes I loved my extraordinary ordinary life too!
AmyQ, love the guinea pigs, they're so cute! Good for you re-discovering your inner child, I try to do that everyday. One of my favorite things to do is to stop at a park and swing on the swing sets. My girls get a kick out of it, we just have so much fun and they are 21 and almost 24.
Terre, wondering why no one mentioned monitoring my heart while I'm taking Celebrex, that scares me a little. My onc was just so pumped that my GP put me on it because it's said to have anti-cancer properties. Prior to that I took Meloxicam which did nothing for my pain. Ugh I'm frustrated at the moment, these meds we have to take really do a number on us. It seems for every positive effect there are half a dozen negative side effects.
Wishing everyone pain free days, hugs, Annie
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Annie - didn't mean to scare you, but yes, Celebrex is linked to heart problems. It also is thought to have anti-cancer properties. My MO put me on it because it helps a lot with arthritis pain. He said typically heart problems don't show up until you've been on it for a couple of years, but has asked my GP to monitor me nonetheless. I don't have heart problems; EKGs, etc, always great. But my heart did stop during surgery when I had the pin put into my leg. No explanation; it just stopped. They were about to hit me with the paddles and it started again.
Subsequent EKGs are fine. So maybe a reaction to the anesthetic. I need to go back about 5 pages, sit down with a notebook and take notes, and respond properly to everyone.
Terre
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Bluefrog... that was the part that resonated with me as well. People think that you should have all of these amazing grand adventures on your bucket list but like you I really don't have any. Just being able to do the ordinary things I've always enjoyed is enough for me. So much wisdom in that article...
Lynnwood... I hope it was able to chase some of those scary thoughts away.
Amy... love those Guinea pigs!
Been a long week so far... is it only Wednesday?? Happy to say that I had very few side effects from my Zometa treatment this month... third time is a charm I guess. I'm really relieved, the first two months were tough. Hope it stays that way...
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Wendy,I will definitely check it out! I seem to have a ton of extra time on my hands these days. My two older daughters are insisting I relax and let them do the cooking. Any other suggestions for inspirational shows or books? I love this discussion board! You ladies are the best
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Terre, no worries, it's good to know the heart problems typically start at the 2 year mark, I've been on it just a few months now but will talk to my GP about being monitored. That had to be scary to know your heart stopped during surgery but glad it was smart enough to start up again without any intervention. Sounds like it probably was a reaction to the anesthetic. My nurse will be here shortly so hopefully she can help me figure out why I'm feeling like this.
Hoping everyone has a peaceful, pain free day. Hugs to all, Annie
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good morning ladies, I just wanted to ask is anybody else having problems maintaining weight I keep loosing and it's starting to scare me. I'm only on Tamoxifin so I'm not sure if that's why. But it's getting really frustrating I feel like I'm disappearing...
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Wendy, I was on tamoxifen for 1 month and lost 10 lbs. I just wasn't very hungry. It also made me sweat alot so I think I lost a lot of water weight.
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Has anyone else had a fracture in their sacrum? What was the treatment? Hoping it's radiation and not surgery.
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Good Morning All
I hope everyone is feeling as comfortable as possible.
Today I have a question if anyone could help it would be much appreciated. In the last month the discomfort in my hips has increased- it's a stiffness and also just a feeling of being unstable..... It makes it very uncomfortable to navigate NYC streets and I don't have the luxury , or desire, to not see the few clients I have, so managing the city is important.
The question is several fold. I did just start treatment. Been on Tamox for almost 3 weeks ( and I haven't experienced appetite or weight loss, but no weight gain either) and I had my first Herceptin on Monday. In anyone's experience could treatment alleviate the unstable feeling?
The other part of my question is the use of radiation. My MO says he uses it for pain, but I feel like some of you have mentioned that it was used as treatment for healing degraded bones. Or am I completely wrong on that?
I am going to have an MRI to rule out any fractures....but in the meantime if anyone could offer insight that would be so appreciated.
gentle hugs
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Thinking of you, Annie, about your appointment with your nurse this morning.
Today is exactly one month since I began taking Arimidex. Does anyone take it with Levothyroxine first thing in the morning? I've just begun that method this morning, as I actually forgot to take it after breakfast yesterday. I was horrified when I realized I had forgotten. So far, I have no SE's.
So, I have again harnessed my courage, and have made an appointment for my first Xgeva shot --Sept. 23. I want to talk to either one of the two nurses who will administer the shot about my belly rather than my arm, but I seem to be having a hard time accessing either one. Either on vacation or not returning my calls. It's getting stressful.
I wrote a long email to my family and friends, so they could completely understand what's going on with me. Everyone has responded with big thank you's, they finally understand the realities, and it's brought us all even closer together. And yet, my fiance's brother and his wife still responded with, "We're hoping for a recovery."
Hoping today is gentle and pain free for all.
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thanks Txmom....I've been feeling pretty good so far no pain from mets or anything...yet. However the weight thing is starting to get to me. I'm 6'1" and 158 is just not enough would have loved this at twenty lol.
So I guess it's the Tamoxifin , I see my oncologist Monday so I will ask her what I can do I guess. Avocado smoothies...yuck.
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Good morning all,
Lindalou - prayers for hubby as well. Do you still find your brace helping?
Annie - Hoping today brings you answers and a solution.
Goldengirls, I think you've been questioning this for some time. It's really hard to give any kind of answer - I would think rads would be used. I know it's sucks not having answers but perhaps your Mom could follow up with Onc or nurse? If I remember reading correctly, you were not in the office with your Mom at her last appt and she forgot to ask? Hoping and praying you get answers soon.
Wendy - weight loss is listed as a SE of Tamoxifen. Weight gain as well. You should make your Onc aware of this.
Amy - too cute!
Terre - your heart has a mind of its own! LOL
Gaia - Tamox can cause pain and stiffness, but this started before tamox? A MRI will give you answers. I get some sharp pain in the hip which disappears in seconds. Is that what you feel? For me I think it's the Femara and old age LOL. Radiation for me is used only for pain relief. Rads were done on femur after rod insertion to consolidate the bone. It can also be used to prevent a fracture. I'm sure others will chime in with their experience.
A good day to all!
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thanks lindaE
The discomfort started right before I started the tamoxifen. It's in both hips and is alleviated with Advil. It's the u stable feeling that's scared me. That's why I wan the MRI. An interesting note is that I only have mets in the one hip not both and it's not the femur but the structure of the hip
Anyway we shall see.
Thank you for your reply and I am thinking of everyone
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Wendy, I like my smoothies made with Garden of life organic plant protein powder, smooth chocolate. It's non gmo, soy, grain and dairy free. Tastes great. Even my kids love it.
Gaia, maybe consider a bone builder like zometa. My hip hurt so much until about a month after I started treatment. Before treatment my hip hurt so much and my gait was all wonky. My last scan showed regression and bone regeneration. I have no more pain and my gait is normal again. Talk to your MO.
Annie, hope you get some answers and are feeling better.
Kendra, maybe they don't get it but just think of it as they are loving you the best they can.
Chelle, we watch Answered Prayers, I read Radical Remission as well as the stories on the Radical Remission website http://www.radicalremission.com/
I like to read My Kitchen Cure: How I cooked my way out of chronic autoimmune disease with whole foods and healing recipes by Mee Tracy McCormick. The first half of the book is her story of illness, misdiagnosis and then diagnosis. The second half are recipes that fight inflammation.
I'm not gonna lie. I also watch Bravo because those people are crazy and it's like therapy. I watch those shows and I'm so grateful I'm me. ha ha.
Have a great day everyone. XO
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Kendrasue, I take a different thyroid med, and you're suppose to take it first thing in the a.m., before you have anything else, meds or food. So you might want to double check if that's true for Levothyroxine too.
Wendy, I've never been on Tamox, but I lost a good 10 lbs. (117 to 107) in the three or so months leading up to my re-dx, and initially had a hard time putting them back on. Is your weight loss new since the Tamox of something that started earlier and just hasn't stopped? Either way, I think you should discuss it with your onc for reassurance and monitoring, if necessary.
Bluefrog, I feel like you do about a bucket list. Sure, I would love to go to Tahiti or Bora Bora, but I've never had a bucket list and never plan to make one. Also, someone here on BCO once used the term "Now List," and I like that a lot better, although I'm still more of a home body w/focus on family, friends and the joy of day-to-day things.
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Hi, everyone! I have 5 pages to read to make sense what's going on here. Before doing that, here is my greetings and wishes for all to have a bright day today!
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thanks tx mom
Yes my MO said Xgeva or Zometa are options.
I am just taking things one step at a time to see how each treatment lands. But yes it's up as an option. I am seeing improvement already to the met on my sternum which is much less inflamed. I guess I am hoping to see some improvements with the left hip too.
I appreciate hearing everyone's experiences
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Speaking of Levothyroxine, Kandrasue and Deanna, I stopped taking it about a month ago for the reasons 1, I was able to bring up my thyroid hormone by at least one point by eating sea grass everyday, and 2, I am suffering quite serious hair loss (it is said low dose Levothyroxine could cause hair loss, I was taking 35 per day before). I feel alright. But I should do a blood test to confirm that my thyroid is OK.
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Gaia0132 my note has nothing to do with pain. You can get a half priced disability metro card with a stage IV diagnosis. Like most "benefits" from the city there are a few hoops to jump through but you might want to try it. Here is a link on how to apply for the discounted metro card.
http://www.nyc.gov/html/mopd/html/programs/transpo...
I Here is another link for a handicap plaquard if you happen to travel by car
http://www.nyc.gov/html/dot/html/motorist/pppdinfo...
I now stick to buses when I'm in the city I find the stairs for the subway sometimes are too much for me I just leave extra time and daydream looking out the window as the bus slowly makes it way.
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Well my cough is getting better but still pretty much deaf in one ear. Linda, hope your cough continues to improve and results come through quickly from tests. On the question about rads, my onc uses them for pain relief. Still not sure what I now have in hip . Seeing Rad Onc tomorrow to work out what is happening re hip.
Worse still, now in hospital for low platelets (dropped to single figures) for 3 days treatment although i have to sneak out tomorrow for a work mtg. Just seems never ending.
But hey I'm watching Grease and hearing all those songs of my youth is quite fun. My husband would be horrified if I suggested watching it at home! Got to look for silver linings.
Wishing silver linings to all
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Thanks NYCchutzpah I actually don't do subways much at all. I walk as much as possible, but that has definitely been part of the issue the last month.
i wonder if there is a general website that lists other 'benefits' available with this staging. if you know please pass along the info.
thank you
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Hey Bosco, here's another fan of Grease! Hospital again! Hope you get answers and good news on your hip. Be careful tomorrow. Never ending is right. No news on scan yet.
Annie - really looking forward to hearing from you and that those symptoms have settled down.
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Bosco, I hope you're home soon from the hospital. Boo for the hospital. Yay for Grease.
I've thought about "bucket lists" but mine isn't exotic. What's on it? Let's see.
1. Weddings of my kids who are still single.
2. Bat Mitzvah of my granddaughter, April 2016.
3. Bar Mitzvah of my grandson, Feb. 2018.
4. Bat Mitzvahs of all the granddaughters coming up after that (I have 1 grandson and 10 granddaughters so far)
5. Lots more grandchildren.
This week was Rosh Hashana, the Jewish New Year. I bless you all with a year of improved health, much love and much joy.
Leah
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l'shana tova, Leah, and a good and sweet New Year with improved health to all.
~Valerie
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