Bone Mets Thread
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I had my Halavan on Tuesday...I believe this would be about my 6th or more which I have every 8 days..and once a month I have halavan...Falasdez...and bone booster (Xevada) ? I have been doing really well for about 3 mths..when I got that late 6pm call from OC say that my tm sky rocketed from 300 to 800 ..Question to you ladies..how low has any of you gone with tm and were doing well ...So CAT scan scheduled for next Friday...just made my OC a little curious..due to the fact I have been feeling and doing so well gaining weight ect.
So of course I go through a Emotional/Mental breakdown for 24 hrs...say gee louise what the Freak now...Been able to go to functions/camping/enjoying life the last 3 mths...and then BANG!!!!! It gets all shot down...DAMN IT!!
So I'm going on this weekend worry
Question for you ladies...How are you all with drinking Alcohol...such as wine...My OC told be to enjoy a few glasses on weekends..I have not indulged...but some nights it would be nice to just enjoy some Pinot Grigio...glass or two...to just relax ..I been around others that have indulged with wine...who their OC has told them it would ok on a Occasional basis only...OPINIONS please.
Just thought that Cancer Cells feed on sugar and that is any sugars am i right...
Sitting here with my thoughts while i'm trying to figure out what I did or didn't due to have the tm go up..i'm just so sad
It's like a roller coaster 3 mths well ...now probably 3 mths down..up down up down..enough all ready please...
Love and Respect and prayers to all you beautiful ladies...Carla
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Sounds WONDERFUL Annie. I hope you thoroughly enjoyed that muffin. I had a teacher in acupuncture school, actually one of the founders of the school, who said that the most important thing about eating is to enjoy it maximally. With the right attitude about it, that muffin is downright GOOD FOR YOU!
Me at the Maryland State Fair. I made it through the day with only minor pain and nausea. Yay! It was a beautiful day.
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free bird, my opinion, not all agree. Pet scans are radioactive sugar. Cancer eats them up to show activity. Eats them up yes.....doesn't make them grow. Don't think the docs are trying to kill us with pet scans. Have a drink
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Dune, Great picture! So glad to hear that you had a great time and with minimal pain and nausea!
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👍👍🍷 the enjoyment you get from a few glasses of wine is better medicine than depriving yourself of life's little pleasures.0
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Carla, I'm so sorry your tumor markers jumped and caused all this distress. I can certainly understand being upset. I know I would be, but then again I'm quite the worrier - a regular Eeyore. That's a fact. I am really glad you got those 3 months. Even though it is part of the roller coaster ride, I'll take it. Hopefully the TM jump does not reflect a negative change in your cancer status. You have my prayers and good wishes, and I have a hunch you have lots of healing energy coming at you from everyone here. We don't know what it is yet. If you can, try to think positively. Try to let it go until you get your scan and the results. I know. That's not easy. It takes a lot of work. Is there anything we can do to help make it easier for you.
As for alcohol, my onc sees no problem with it. However, mom and I aren't completely sure it wasn't the alcohol that made me fall asleep standing while we were on that wonderful vacation. I had forgotten about it and bought a six pack of Guinness. I knew I hadn't had anything to drink for a very long time, but I just figured it was because of me avoiding carcinogens in alcohol. Mom reminded me of why I shouldn't be drinking and told me it affects her too when I don't feel well. Whoops! Anyway, I had my one Guinness after helping mow the lawn and there were no repercussions -- unless this nausea was from it. Anyway, I need to make another test or two before passing judgment for myself, but my onc definitely thinks it is ok to drink moderately with cancer and with the treatment, including pain meds.
Good luck. Let us know how it goes.
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Hi all,
Geeze...I am way behind again. Welcome to the new folks - as has been said, sorry for the cause of you being here but glad you found us.
Carla - glad you had 3 good months, but so sorry your markers are up and you're stressing. Sending good energy your way.
Dune - great photo! And you crack me up. Definitely need some more experiments.
I think everything is fine in moderation, including a glass of wine or a beer. Just don't pass out!
My MO is fine with me having alcohol in moderation; but then I'm not much of a drinker. I have about 2 martinis a year. But I'm so allergic to alcohol that I only have about 5 or 6 glasses of wine a year. Love good wine, it just doesn't like me.Myra - so glad you didn't have to evacuate!
Christina - great photos of what looks like a great time!
LindaE - happy early birthday! Hope it's fantastic!
Chatty - welcome!
Lindalou - so happy no ONJ. It sucks big time and is intensely painful. Sorry you have to have a root canal though.
Annie - hooray at good news!
Sorry to hear Patty was in hospital but glad she's home again. Has anyone heard from Hope lately?
I should take notes as I know I'm missing people, and I'm sorry. Hope everyone has a lovely day!
Sending hugs,
Terre
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Glad you were able to enjoy your vacation, Cristina, and thanks for the beautiful photo. Hope you'll get around to posting a few more.
Dune, you continue to amaze me! Good for you for getting out and going to the fair! Looks like it was a lot of fun.
Carla, I'm so sorry about those rising TMs. Hopefully, your onc will get things sorted out quickly. As far as the question about drinking, there was an interesting study in 2010 that suggested that moderate alcohol intake did not increase initial risk of developing IDC, but that it did for ILC. Not sure if that holds true once we've been dx'd, but it's always made me a bit reluctant to totally throw caution to the wind, since my bc was both IDC & ILC. But I don't think an occasional drink or two on a weekend, for example, is going to change the course of our disease -- as long as your onc okays it with the meds you're on. As far as sugar -- glucose feeds all of our cells, and since cancer cells are fast growing, they take up more glucose than other cells. But as long as you're eating healthy and not loading up on simple carbs or at risk for developing diabetes or other health complications, I don't think enjoying a glass or two of wine will make your bc cells suddenly grow faster.
Today was the first day in several weeks I got out for any length of time (lunch & shopping with DH), and by the time we got home, I was hurting really badly. So I let him massage some peppermint oil into my back and ribs, and I really think it's helping. Just something I thought I'd share, since I don't think I've seen it mentioned here in the past. We had learned about it as a pain reliever from a grower/producer at the Scottsdale Farmers Market, and I've been a fan ever since for minor headaches and shoulder tension. But I hadn't thought to try it on my mets pain until tonight.
I just checked, and Hope hasn't been on BCO since 8/24. She may just be busy, but I'm concerned. Does anyone have contact info' for her? She's not on our list.
Wishing everyone a beautiful, pain-free & relaxing Sunday!
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Deanna: peppermint oil, massage, let him. Love it!!!!! I may have to get some of that. Does the initial order come with a fine looking man to do the massage? Muahahahahahahaha!
I am sorry to learn you had not been able to get out for so long. My friend was shocked at how white I was, but then again, she goes camping and/or fishing nearly every weekend. For me, it is so much easier to stay at home.
I hope you are feeling better and that the remainder of your weekend is pain-free. Maybe another massage?
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Stefajoy, saw your post and wanted to add that over 8 years my onc continued to check my liver enzymes quarterly and poke into my abs once a year. Sometimes new mets is about something that's been in there for years but hasn't grown or not enough to be seen, just lurking, temporarily harmless (somewhat like me on this thread). I did read sometime ago a study which showed a graph on a 4-year theory your onc may have been basing his statement on. If I recall correctly it mentioned that the risk of progression dips to 2% annually after 4 years. I put a lot of hope in that number over the years.
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hi ladies! !! I called blue cross and blue shield and will call community care Mon am. Husband has an extra paycheck this month that can pay our first month premium! !! Pain and exhaustion always there but I've managed to watch my grand babies a few times. I've been sewing pretty small pillow cases and have some ladies board. We are making up 8 chemotherapy tote bags for American Cancer Society room at the cancer center. A tote a pretty pillow a water bottle some mints and herb tea and some hand made gifts like Christmas ornaments etc. What is your favorite teas???
I haven't been on chemo since Feb when I was re diagnosed. Besides my short try with xeloda. Oncologist says it won't make s difference inmy long term survival at this point. We will decide after next scan. Next scan due Sept. Insurance starts in October! I have an oncologist appt Mon. So ill see then I guess if their is any options.
Love and peace to all.
Oh today is my 4 2nd birthday! ! Its been a good day. Here's to aging!!! So glad for it! !!
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Happy Birthday HopeFaith! So glad about the insurance. Good luck with the scan and oncologist - keep us posted.
Deanna - peppermint oil massage sounds lovely.
Heidi - love your "harmless lurking" anaology. I can't type or spell tonight. oh well...
Sending hugs to all,
Terre
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Hi All.
Deanna - peppermint oil sounds perfect and soothing to me. I will try that on my upper shoulder blades. So happy you got out for lunch with you dh.
Hope Faith - Happy 42nd Birthday!! Did you do something special? Your small pillows sound like the perfect gift to a chemo patient.
Christina- Love your smile!
txmom- Yes! let's all meet for coffee....wouldn't that be great?
Chatty - welcome ...when is your next scan?
Myra- I thought of you when the news said no hurricane for FL. Whew...... Have I told you my mom's name was Myra? Every time I see your name I think of her. I have only known one other Myra in my life. Now I have three!
Terre - any more animals coming to your door?
I'm in agreement with moderate alcohol. I don't drink very much but some here and there isn't going to send us into a cancer tail spin. And the plus is it may help those of us who can't sleep.
I am one of the few whose MO doesn't use tumor markers. He said scans are the best indicator and they have been for me so far. He indicated that his experience has shown patients get too upset when they are low and bounce around and said a scan is clear and for the most part definitive.
Lynnwood - Tumor flares are so random aren't they? Yesterday I could hardly walk, today I'm ok. And you're right cancer is a head game.
To everyone, enjoy a Sunday ( or Monday) muffin and a glass of wine tonight. Or a nice cold gingerale!
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Hello to all,
Xavo, I must say I loved your explanation of tumor flares, I could actually visualize it!
Chattykat, welcome but sorry you have reason to be here. This is a great place to come for understanding and support, I don't know where I'd be without the help of these beautiful women. Wishing you all the best.
txmom, it would be great if we could all get together for coffee wouldn't it? I'd love to meet everyone here, such a great group.
Ellelou, hi I don't think I've seen you here too often but nice to see your post!
Lynnwood, I feel the same as you, some days I'm really positive and others I am a mess and in tears. I try very quickly to snap myself out of it, some days are easier than others.
Carla, sorry to hear of all you have going on but if you're still feeling well let's pray the tumor markers are not indicative of any progression. As far as alcohol goes I'm not much of a drinker but when the opportunity presents itself I will have a drink or two, nothing too crazy. Please keep us posted, sending postive thoughts and healing energy.
Dune, you're awesome! Love the picture, love your smile and your spirit. Glad you made it to the fair and hope you had a nice time.
Terre, nice to see you here, always miss you. How are you doing? Any luck on the house front?
Deanna, I have a nice supply of essential oils, peppermint is my favorite! My go to oil for pain, dh massages me with it all the time as do my girls, it's an amazing anti- inflammatory, I was told about it by one of my nurses. I also use Frankincense but love the smell and feel of the peppermint. You can mix lavender and peppermint together and it's amazing how it makes you feel, however lavender is said to have some estrogenic properties so I don't use it too much. My nurse said you should also rub it in the palm of your hands and inhale it, so good for headaches and relieving tension. I'm glad you got out yesterday but sorry you were hurting so badly. I hope today is a better day.
Heidihill, nice to see you hear, I've always loved your posts!
HopeFaithCourage, Happy 42nd Birthday! Wishing you many many more! Best of luck on your upcoming scan and glad you're insurance will be in place soon.
Lindalou, I have a bad habit of liking a muffin with my morning coffee, either a whole grain carrot orange or an apple cranberry walnut bran muffin. I know I can make them sound healthy, I'm sure they're not but oh I so enjoy them!
Wow this is long, hope I didn't miss anyone, never my intention. I'm not feeling the greatest since Friday's infusion, don't know why it hasn't done this to me in a long time. Laundry and house cleaning awaits!
Hugs to all, Annie
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I just wanted to share this pic, dh and I went out for dinner last night to a beautiful restaurant right on the water overlooking our main street bridge which has just been redone. They've added lights to it and on the weekend when it gets dark they put on an amazing light show. It changes colour every few seconds, from green to blue, purple, red, yellow and sometimes all the colours at once or a mixture of two. The reflection it makes on the water is breathtaking!
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Annie- I love bridges and to see this one in color is so pretty. Dinner out with your dh just makes it all the better!
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Good morning ladies from not very Sunshine State of Florida. Very windy and rainy, but luckily no tropical system.
Dune, great picture of you! So glad you enjoyed yourself. Sometimes getting out is our best medicine.
Deanna, so sorry you are in pain. I must try that peppermint oil, it sounds heavenly.
Happy birthday HopeFaithCourage. So sorry you are having such a horrible time with insurance.
As for alcohol, I have a glass of Chardonnay most nights. My onc says to enjoy my life and be happy. This is not the thing that is going to cause progression. Everything in moderation. That includes muffins Annie. You seem to be doing just fine with your indulgence.
Lynnwood, I would love to meet you all for coffee. I actually met a woman from another thread and we have become true friends. We don't see each other a lot, but there is a real bond there.
Well, today is a good day for a good book. Try to stay pain free and as Dee says "cheers". 🍷 Myra.
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Good morning friends! I am certainly not caught up here, many pages behind, but I hope everyone is doing well. I haven't been feeling good for the past 10-12 days. Last week I had vomiting and nausea followed by a pain flare over the weekend that really took me down. This week, I've been weak, aching, my stomachs hurts, some nausea, and even a low grade fever. No energy for anything. I called my MO office and they think maybe a virus due to the fever. I got close to going to ER a few times, but the thought of all the poking and prodding is not a good thought. I have labs and a regular appointment this week, so maybe something will come of that. Or maybe I will just start feeling better because this was some kind of virus. I dunno. It has been a bit depressing to think that this may be my new normal. Sure hope not.
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If I am learning anything from my diagnosis this month and starting chemo it is that I am going to embrace the days when I feel well. After 12 days of horrible diarrhea from the first round, I finally felt well enough to leave the house Friday. My husband took the day off from work and off our family went for an overnight in Cape May, NJ. We endeavored to capture the summer we missed due to my spinal fractures and subsequent surgery and diagnosis. While I was still a little sluggish, I savored every moment of our getaway, especially the happy faces of these two! Hope we all can find moments of good among the battles we are in. Happy Sunday to all.
Rachel
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Hallo Ladies,
The picture is great Bluefrog76 beautiful children. I am so helped by this thread and the courage and determination from all the woman on this site. I am just starting this journey and I figure I'm in the crying phase. Can anyone relate? My husband keeps saying don't go to the dark side or set an egg timer and get on after five. Still trying....
For me knowing that I'm not alone is huge
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Welcome wendy3
Oh, do I so relate to the crying phase. I am a big fan of tears. I am just working to hold the pain and joy together. I have many blessings in life and keep a morbid list in my head of things worse than cancer. I was dx stage IV in November and feel I maybe getting past the crying phase now. I still allow myself a good cry. now and then with my sister who is my rock.
A few notes to catch up on dlb I will talk to my MO about increased pain and hope for the best.
Sending positive thoughts to people dealing with progression and se.
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Happy birthday FaithHopeCourage! I hope you enjoy your day! Hope, glad you checked in, hope that your symptoms are just a virus and pass soon, glad you have an appointment this week. Rachael, your children are beautiful, your daughter looks just like you! Even though you felt sluggish, you still managed a smile and to enjoy the day! Wendy, welcome to our group, sorry you have to be here. I'm a crier myself, in good times and in bad. I like how 3-16-2011 put in when she mentioned about holding the pain and joy together. Tears are healing any time they come. I also like knowing that I am not alone here. I have shared things here that I have not shared with many, because I know you all get it
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Good morning to all
I am new here too Wendy and as many will say, welcome, but of course we wish none of us had need to be here.
Bluefrog- that is a lovely photo and whatever you are feeling now, or when difficult moments come, please look at that photo and know that beauty and joy are IN YOU! To many more. You've been through a lot in a short time
Carla I am sorry about the tm going up, I think I've been understanding that that can happen at a certain point because of treatment. Let's hope that's all it is and that I can remember that too if it happens as I begin that part of the journey.
Romansma I am sorry to hear that you have been under the weather- please don't anticipate that it is the new normal....I hold the hope for you that it will pass.
Myra I love your attitude ( and your MO) about living life. Right from the start I KNEW my strategy would/is based on QOL. So I raise a glass to you. And to anyone- it might not be a glass of wine, but a piece of cake or a slice of pizza- whatever it is choose it for pleasure and participation in life!
Deanna sounds like getting out was good medicine and even if it brought up some pain, you received more medicine from the massage!
Annie- the lights on the bridge are beautiful. Were you also able to see the big full moon?
HFC glad you are going to be getting the insurance.
RE ESSENTIAL OILS AND PAIN RELIEF- you all might also want to consider St John's Wort oil for pain.
Again, I myself am at the beginning with extensive bone mets. This past spring before dx, I began having a series of weird pains and spasms; so I haven't felt 'myself' for a while- and for me because my life and my livelihood are tied to my physical well being ( I'm a bodyworker/yoga instructor and holistic health consultant) this has been a triple whammy. On my worst days I wonder what I am even doing here ( yes meaning planet earth), then on good days I KNOW something else is being shown to me. In between I am embracing all I can. Started my Tamox pills yesterday and practicing not creating stories about SE's.
Linda and Lucy i third that this ride is a head game! I vote to keep our attention on life even when the pain/flares come....though I didn't do that so well myself last night!
Well now I'm ready for a glass of wine.... some food prep first
Hope everyone has an easeful day.
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Wow, I was away for a day and missed so much here!
Chattykat - Welcome, I am sorry for the reason that brings you here, but I am glad that you found us. You will meet many helpful and supportive people on this thread.
Wendy - crying is normal. I am usually an update, positive person, but I shed my share of tears. I had a meltdown just last night for no obvious reason. Luckily, my DH is very understanding, and held me, listened to me, and talked me back from the dark side. This morning I went for a 4 mile walk, the longest since my diagnosis, and it really made me feel much better. My breast surgeon gave me the old "10,000 steps a day talk" last week, and if I do 3 or 4 miles a day along with all the normal activities, 10,000 steps will be easy. I am thinking of going back to Zumba, but we shall see. I am going to enroll in a yoga class. I think it will increase my flexibility and help me relax.
Gaia- any advice on finding a good yoga instructor?
I have no advice on alcohol, but put a good cupcake in front of me, and I will be tempted. Between the advice for low carbs, low fat, and no processed foods, I feel like all the yummy things are prohibited. I figure something sweet once in a while is ok.
I love all the beautiful pictures that have been posted. Keep them coming.
Lynne
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Hi All
I'm at a fund raising grill out for our breast cancer center and Project Embrace, a fund I started 6 years ago. The UWSP women's basketball team hosts it. I'm in purple. I am 5'8" and I look like I'm 5'3" with all these beautiful tall women! My back is rebelling standing on cement! The Pink T-shirts say HOPE on the front and One Team, One Fight on the back. Best to everyone.....as we all continue to fight.
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Dana Farber is hosting an mbc forum in October, and I was toying with the idea of attending to hear about what is on the treatment horizon. I noticed that Dr. S is one of the presenters. I think I will skip his presentation if I go.
Lynne
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Nice photo, Linda, and I'm impressed that you started a fund! Let us know if we can do anything to support your efforts -- like if you have a donation page, etc. And, yes, those are some tall women!
Hope, so glad to see you, but obviously I'm concerned that you haven't been feeling well. Glad you have an upcoming appt & labs. What day is your appt? If not Monday or Tues., I'm wondering if you should call and see if you can slip in if they have an earlier cancellation? You've got a lot going on, and if you feel so bad that you were mentally close to going to the ER multiple times, I'd hate to see you wait around another 3 or 4 or 5 days.
Love the photo, Rachel! And glad you were able to get to the beach on the spur of the moment. What chemo are you on that caused you to have the big D for 12 days? Did you call and report it to your onc? 12 days it a long time to suffer -- especially with that!
Happy Birthday, HFC! One question that's been on my mind since reading your posts... well, actually two questions... (1) Have you clarified any exclusions in your upcoming health care coverage for pre-existing conditions? As I've read your story, I'm concerned that this could become an issue -- either making you wait an extended period for tx because you had bc when you got the insurance, or flat out denying coverage for it you. And (2) I'm also not comprehending why your onc or an oncology social worker or someone within your care setting hasn't stepped up and found ways to get you any care since February. Between national and local non-profits to help women who don't have insurance, and pharmaceutical programs for the same purpose, I am shocked an oncologist has let you go untreated for 6 months. I don't know if you've prowled around BCO much, but I know over the years there have been multiple threads listing organizations that can help women in your situation. I can look for them if you're interested.
Annie, the thing about lavender not being safe for ER+ bc is basically urban legend. I know because I researched it extensively when I was creating Healing Finds. At best, it is a very weak estrogenic, and there's no reason to avoid it. Here are a couple of recent articles about the junk science behind the concern, mostly found in older articles, yet continually repeated. http://www.naha.org/naha-blog/neither-lavender-oil...
http://roberttisserand.com/2013/02/lavender-oil-is...
And gaia, interesting about St. John's Wort Oil for pain. The only time I ever tried St. John's Wort (the supplement), I literally thought I might die. I don't know if it was a tainted product, my reaction to the herb, or something I took with it, but I think it dramatically lowered my bp. It was very scary.
Lynne, your post made me think of something else I noticed going on in October that might interest any of you who live close enough. Here's a link: https://www.facebook.com/events/912441292131635/
Stopping with individual mentions here because this is so long. Hugs, as usual, to everyone!
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Thanks everyone for the warm welcome... so glad I've found a place to find support, comfort and to give it to others as well. Can't wait to get to know all of you better.
Hi Wendy... I'm newly diagnosed as well this past June. I think I cried non-stop for weeks... and, I definitely stayed over on the dark side for a while. Sometimes I still go there but not as often. It's okay to step over to the dark side as long as you don't stay there. I am grieving for that vibrant lady I was only a few months ago... it blew my mind how quickly the cancer reared it's ugly head and brought me down to my knees. Take it one day at a time and we are all here to support you along the way. **hugs**
A couple of people were asking about my treatment, I forgot who you were because I got behind on my posts... but, I am currently taking Ibrance 125 dose, an IV infusion of Zometa, and hormonal therapy in which I'm getting the Goserelin and Fulvestrant injections. All on a 28 day cycle. I take calcium/vitamin D every day as well. I get blood work done every two weeks... so far, so good on that. My first bone scan will be mid-October... bites fingernails... I sure hope this treatment is working. My worst symptoms right now is extreme fatigue and a lot of achiness/pain in my spine and rib cage which are two of my most affected areas. I'm trying very hard to go easy on my spine. The cancer starts at T3 and goes all the way down to L4. It's freaking me out...
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Deanna,
With the unrelenting diarrhea after my first treatment, I did have to go in twice for IV fluids. I'm on Prilosec and probiotics now, which the nurse practitioner and I are hopeful will prevent or reduce this particular symptom. They also think it's possibly from all the narcotics I was on from my spine fracture and subsequent surgery. My second infusion is Thursday, so we will see!
Rachel
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Hi all,
I haven't logged in for 2 days and this place is busy to say the least.
Welcome to newbies (I tried to remember your names as I was strolling down the pages, but my brain has gone to mush, sorry).
Thanks for the update on Patty, Deanna. Certainly sending healing vibes.
Myra - good to hear no need for evacuation. Just watched the news and Vancouver really got hit hard, lots of power outages and damages. Dee, hoping you're OK.
As much as I enjoyed an occasional glass of wine, can't take any more since taking my pain meds cocktail.
Romansma - sorry you're feeling so sh*tty. It really sucks. This new tx seems to be hard on you. Praying this is just a virus and that your labs are good.
I've been in a lot of pain these past few days - I would need pepperming oil from neck to ankles. Don't know what is going on, but all my muscles and bones seem to be hurting on top of mets pain. And it wakes me up constantly at night. Lots of breakthrough pain meds. And someone said something about crying - well everything and anything triggers tears these past few days. Not feeling my best. That's my rant for today.
Wishing us all a good week.
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