Bone Mets Thread
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oncologist nurse told me over the phone that doc had questions for rad oncologist before he told me about my bone scan. I guess the wording wasn't clear to him on the report about what's going on in my sternum. I'm numb about it.
I know it's TMI but I'm sure I'm not the only one experiencing relationship problems because I have zero sex drive.
I do have much I feel blessed for......but.....just saying ya all know w hat I mean...I'm having an attitude problem. I'm a downer I know.
I'm grateful for you ladies and this thread. I feel a little less crazy and isolated in my head about all this disease does
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Curculio, there are a lot of posts about pain, but I think people need more support during those times. I suffered severe pain prior to bc dx. Now that I am on a tx plan, I am blessed to be pain-free. There are many people with bone mets who remain pain-free for long periods of time and others whose pain is under control. I try to walk every day with the goal of 4 miles a day. I feel that the exercise helps but was told by MO not to do anything that hurts. I follow that advice. I hope that you feeling better soon.
Lynne
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Good Morning
I read here everyday... hard to keep up and like I said before sometimes I'm just stumped to post.
Rachel I hope you will find more ease being home.
Dune it sounds like pearlady will offer lots of options for you. keep us posted
LindaE- thinking of you re scan and that fumbled scenario... I would have cried immediately.
HFC- it sounds like a mini roller coaster right now- hope you hear back from MO soon
Deanna again thanks your sage words
Christina I have a 6 but haven't tried the microphone... have fun and glad you had a better day. Wishing you many more!
I am glad to hear the stories of pain subsiding once tx kicks in. Been in a lot of discomfort last 2-3 weeks. Started H yesterday and actually felt really relaxed all day. Placebo? stiff this morning.... but breathing
Thinking of all even though I know I didn't mention everyone....
here is to an easeful day for all
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Cuculi: I have a lot of stiffness, but no pain. I was only diagnosed about 6 weeks ago. I had two vertebrae fractures, which were caused by metastatic BC that I otherwise wasn't aware of. I was in the worst pain of my life for months with a misdiagnosis. I had surgery and feel so much better. Nothing else hurts, but I do hobble around a little bit when I first get up from sitting. I have a lot of fatigue, but that is from my chemo protocol. I've had 2 treatments of 8 and then will be on herceptin for another year. My mets are significant: skull, spine, ribs, shoulder blades, but no pain. I receive Xgeva injections every 6 weeks.
I think you posted a few days ago about deciding to leave work or not. My kids are 8 and 10 and I had never been home with them. My job is incredibly public and demanding. I decided to take this year to be home with them, have flexibility for treatments, and be able to focus 100% on being a mom when I'm feeling well. I want to be able to create a lot of memories with them, since the future is unknown. I'm optimistic about my prognosis, but am going to find as much good in this year as I can and take being forced to slow down and prioritize as a gift.
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LanaM- how are you doing?
Lynne- 4 miles a day is fabulous! txmom 5? Wow. so good to hear! I'm up to about 2 miles on good days.
Rachel- just being home will help you recover. Do you have people who can help out?
Christina- a day with your daughter and feeling well is the best medicine.
Dee- Enjoy your holiday. A glass or two of wine sounds pretty good to me.
LindaE - will be thinking about you tomorrow and your scan. Are you feeling any better?
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Cuculi THP is Taxotere, Herceptin and Perjeta. It's my chemo cocktail. I have 2 more taxotere infusions and then will be on Herceptin and Perjeta until....my cancer is triple postitive. Your little boy has a sweet, kind heart. My teenager is struggling with her idea of God at the moment. Hearing your mom has terminal cancer is tough. She is learning that although miracles do happen, God is not a wizard in the sky. Oh regarding soccer, let me clarify, I didn't play a game. I kicked the ball around with my brother who took it easy on me. ha ha But it's a miracle considering 3 months ago I was dragging my leg behind me. Stupid cancer.
So I saw a FB post Kelli Parker posted on Dr. OZ FB page about MBC so I posted my own. I thought maybe others of you might be interested in posting as well. Together we have a loud voice. This is what I wrote. Feel free to like it on his page and write your own post. Have a great day everyone. XO
Dr. Oz do you know that approximately 108 women in the US will die today due to metastatic breast cancer? One day I will be one of them. When I was first dx in May '15 I thought "Oh good, it's curable." I was given a 5 year prognosis. I am 47. Please consider having a forum during the month of October. I have read many stories on breastcancer.org of women who were early stage breast cancer survivors and are shocked when they get diagnosed with stage iv breast cancer because they thought no breast s= no breast cancer. Stage iv breast cancer is the only cancer that kills. We need research. Please start the discussion. #ihave3daughters #youhave3daughters #youhaveagrandaughter #dontignorestage4
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Dee, I like Bean Time in Ladysmith. They have good coffee and fun atmosphere.
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Good morning all,
Dee - have a great vacation. I fully agree with what Annie said. Happened to me to post rads.
Cuculi - I was in a lot of pain prior to dx. Tx, rads and monthly infusions helped very much. I have a pain med regimen that I take daily, gives me an excellent quality of life. I do have some flares once in a while and adjust pain meds.
HFC - sex drive - what's that!? Meds, frame of mind, dryness etc don't help. I talked openly about this with BF and we made some adjustments. Also tried all kinds of lubricants and the best is coconut oil. Frequency is not what it used to be ... TMI It's a good thing that your Onc is questioning, of course our minds go spinning. I'd rather have my Onc question and have clarity. Thinking of you.
Dune - waiting with you for your blood to get back to normal. How are the rads going?
We are such a brave bunch of women!
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TXmom... I can't find the Dr. Oz post... can you post a link??
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Thanks everyone who posted replies to my questions about Zometa tx timing.
Cuculi, I was diagnosed with two small mets to bone, one to left pelvis and one to lumbar vertebrae in July. So far, I haven't experienced any pain and hope to keep it that way. Starting Zometa Oct. 1 with 5th TCHP tx, then one more TCHP, then H only for 6 more rounds (every 3 wks).
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OK, I hope this works. I'm not super tech savvy. https://www.facebook.com/photo.php?fbid=10206605821337902&set=o.35541499994&type=1&theater¬if_t=like
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You can copy and paste it. I checked and it works.
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Yep, it works... thanks txmom...
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Thanks for making us aware of your FB post. I just commented on it.
And just fyi, when you post a link, just hit the space bar after it, and it should make it clickable. Here's yours fixed.
https://www.facebook.com/photo.php?fbid=1020660582...
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oncologist nurse called me. I have onc appt Oct 1st and told I need to go to rad oncologist. 2 new areas of lytic change in my sternum. This area has already been radiated. ???? She didn't mention chemo only possible rads. I hurt here and in my left arm. Sucks. DH comes busting in my room looking all cranky like he's fixen to bitch over something stupid. He saw the look on my face and knew. The rads didn't stop the cancer. It's still chewing on my sternum.
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The bone scan showed this. The ct looked ok.
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Thanks Deanna for fixing it. It looked great til I pushed submit. Hopefaithcourage sorry about your sternum and your husband. You need some love. XO
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Hello to all,
txmom, read your Facebook post and loved it! Thanks for doing that.
HopeFaithCourage, sorry to hear about your sternum, I have mets there as well. I guess that's why we need the bone scan as well as the CT. Hoping you get some answers soon.
Sorry to not address everyone, I've been feeling sick since last Friday, major heartburn and nausea that won't go away, starting to wonder what's going on. I've had intermittent esophageal issues ever since I had my sternum radiated so wondering if this is a long term side effect. My stomach isn't feeling the greatest either so not sure if this is a bug I've picked up, just want it to go away.
Hugs to all, Annie
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Oh Annie that sucks. I'm sorry. Hope you feel better soon - have you checked it out with your nurse?
HFC - wishing you the best.
Aurora - how are you?
Bosco - Feeling any better?
My cough is getting much better. Today was a good day, did some shopping, went to my notary for a small change in my will, took a nice long walk, did some laundry and housework and weeding. Everything in small doses but it was so nice to be active.
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Linda, glad you're feeling so much better and that you had such a good day. You accomplished a lot today and yes small doses is the way to do it. Good luck with your scan tomorrow, I'll be with you in spirit.
I will be seeing my nurse Thursday morning so I'll definitely talk to her about it. Last Friday evening I was out for dinner with a friend when I suddenly felt very ill, broke out into a cold sweat, felt dizzy and faint. I started to feel like I was going to vomit so had to ask her to quickly follow me to the restroom. After about 15 mins and some fresh air I thought I'd be ok so we continued on with our evening but I've been nauseous ever since with bad heartburn. I hope it stops soon.
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Annie, have you ever had any heart issues? I know it's probably far fetched, but what you're describing made me think of some of the more subtle symptoms people sometimes have in connection with heart episodes -- especially the sudden cold sweat and then the bad heart burn for several days. Have you had any other chest, arm or jaw discomfort?
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Hey Deanna, no I have not ever had any heart issues. I do not have any chest, arm or jaw discomfort just really bad nausea and an awful bitter taste in my mouth, like I've been sucking on rusty nails (I know that sounds gross) but the best way for me to describe it. I suffered with acid reflux years ago and felt similar to this but without the upset stomach. I just feel awful. You know what really stinks is that my back started feeling better and I got this in its place, just no break from feeling crappy. Sorry for the rant. I wonder if the months of being on Celebrex could be causing this? Aside from that I can only think it might be a stomach bug or an after effect of the rads to my sternum.
Hugs, Annie
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Annie - Food intoxication? Whatever it is, hope it goes away soon. Sending hugs.
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Annie, are you still on Celebrex? I just took a peek, and there are all sorts of SEs associated with it, both along the lines of your thinking, and surprisingly mine too. And your description of a rusty nail taste makes me think iron... which makes me think of internal bleeding... Hmmmm..... Not sure what's going on, but I'm glad you have an appointment on Thursday and can run these symptoms by a nurse. And I know just how frustrating it is to no sooner have some pain improve, only to have something else come out of left field. That's how I felt last week when my rib and back pain finally settled down, only to have that stabbing mystery pain in my shoulder blade. So frustrating!!! I'm so sorry you're feeling so bad, and hope whatever it is passes quickly and you can get back to feeling good again.
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DH took me out to dinner and we went grocery shopping. Having a full fridge and to cook for my family makes me very happy. I had a good cry and had a Xanax at bedtime which I rarely have. I feel much better. It's past due time for chemo and rads again. It'll feel good to be fighting it again. DH slowed down and we talked a bit. He is a sweet man for such fusser
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HFC -A good cry and sleep always helps doesn't it? This rad treatment may be shorter if you are radiated in the same place. I've had that and the sessions are shorter. Hope that is what happens for you if you have to go through more radiation.
Annie- I forgot abut Celebrex. I can't take it for many of the reasons you are mentioning. If you can, stop it today and talk to your doctor or nurse tomorrow. They may have a RX drug you can take to settle your stomach/esophagus. Sorry you are so miserable, and yes, it is always something isn't it?
txmom- Thank you for posting on Dr. OZ. I will go there too.
My dh gets his PSA tomorrow and is nervous, and pacing and crabby, snotty and distant. I sometimes forget how much he has to go through too. I wish he had a place to talk like this, but he isn't the type of guy who would do that. He has one guy friend to talk to but doesn't do that often. He is 1.5 years out tomorrow from his prostate cancer.
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Some of you may have already read this but for the sake of all the newbies like myself I thought it was worth sharing... Hope all of you have a peaceful day today...
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Chattykat, I have not seen this, thanks so much for posting! I needed to read this today, scary thoughts in my mind this morning.
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Thank you so much for sharing the NY Times article. So much of it resonates with me. The closing thought, that all we want is to return to an ordinary life, especially. When I was first diagnosed last month and suddenly pondering my mortality, I was surprised and relieved to learn that I have no real bucket list. I don't care if I ever see the Eiffel Tower or stay in an overwater bungalow in Bora Bora. I just want more of my average life: Thanksgiving dinners, back to school nights, apple picking. I'm so content with so little, and will seek out every treatment for as long as I can to have more of this extraordinary ordinary life.
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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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