Bone Mets Thread
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Patty, When do you get to go home?
Deanna, Nice photo of you and family and great news on dropping TM's.
Mary-Evelyn, Welcome to you. We are here for you as you navigate your way through options and biopsy.
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Welcome Mary Evelyn. This is a great supportive group.
As I posted in Faslodex girls thread I am struggling with rads se. Treatment ended a week ago. One treatment spot was T3 and I was warned that I would have esophageal pain. Wow, do I. I'm having to take pain pills to swallow and I'm eating tiny meals. Last night I had achy flu-like joint pain and a slight fever of 99.9. That's gone this morning. I think I may check in with my RO if I'm not better tomorrow to be sure I'm still in the "to be expected" phase. Has anyone else had this?
Anyone here in the hurricane area? We have spent several winters in Cocoa Beach FL. Everyone take care!
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Kap- I have been reading but not posting much but wanted to let you and everyone know you are all in my prayers.
Carol
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Kaption. I had horrible throat pain even bleeding when taking rad. Magic mouthwash helped a little. Mostly ice cream cold stuff. Mo approved crunching up pain meds in applesauce to get down. Check with dr first not all meds should be crushed esp time release.
Hoping to go home today waiting on dr
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Patty, sure hope you get released today! What a long stay you've had.
Thanks for the tips. I'd thought about the mouth wash but hadn't tried it yet. I'll do that. So far I've been able to get the pain med down. My biggest pill is the one I take to keep from getting UTIs. So far I've gotten it down- but it hurts. I can cut that one.
Yes, my favorite thing to eat is my almond milk ice cream bars. I've had them for breakfast a few days. Lentil soup works too.
Thanks!
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Kaption. Glad you are eating some yummy foods. Good luck. How much longer do you have rads ?
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The rads ended last Wednesday. This stuff is just hanging on. Actually I didn't feel too bad during treatment. It got worse afterwards. But, he said to expect that. I may be doing a bit better today.
Thanks! You going home today?
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Kaption, no advice, but hoping your pain starts to ease. I'm wondering if you can ask for that UTI preventative in a liquid suspension? Otherwise your onc should be able to RX an alternate antibiotic that's at least available in a capsule you can open and mix w/something soft. Extra prayers that the pain starts to ease up, and that your back will be much improved.
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Waiting on dr but I feel extremely confident they'll let me go.
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yay!
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yea. Dr came in like 1 1/2 hours ago to release me. Haven't seen the nurse to bring discharge papers. Ugh waiting is so very frustrating. Oh well. I am going home so I'll focus on that for now. Thanks for all the support ladies. You made my hospital stay bearable without getting so depressed. Thanks
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Mary-Evelyn - a warm welcome to you on this thread.
Patty - YAY for going home!
Kaption - Those nasty SEs have got to stop soon! Every time I had rads (lower body only) I was told I could have a pain flare along with other SEs that could last 2-3 weeks. I will never forget that first pain flare! Good idea to get in touch with doc if it doesn't improve.
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kaption, when I had esophageal pain from rads, my doctor prescribed a liquid medication that I took right before I ate anything. It coated and somewhat numbed the throat and made it easier for the food to go down. When I get home I'll look at the bottle and get that name for you.
Stefanie
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Thank you Stephanie!
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Welcome Mary-Evelyn, sorry you have this news that brings you to the boards. Know that people are thinking of you as you go through scans and pending results. Be reassured, breast cancer treatment and research has come A LONG WAY since 2006, so don't be surprised if you're inundated with information. Some may heighten anxiety, but most should alleviate doubts. I had Stage 1 in 2009, and a reoccurence in 2013. In 2013 I surprised by the pseudo-science and "immediate cures" for cancer sent to me. Ugh! Have patience.
Patti--I am a small home chicken farmer, and recommend eggs from local reputable small home coops. Owners of smaller flocks tend to feed their chickens better, organic feed (hormone & antibiotic free) and fresh table scraps, and let them free range for additional protein. If they have meat for sale, the quality of meat generally depends on their butchering techniques and there is more room for error there. On smaller farms, you may find a good blend of bio safety and less additives (like fat injections, etc). All chicks must have some vaccines (as do people) and their are appropriate times for antibiotics.
Having said all that, I would remind you that a lot of UTI's are a side effect of over prescription of antibiotics. I can promise you (as a previous ICU RN) you had A LOT of heavy duty antibiotics if you had a UTI and were Septic. So these first days/weeks after hospitalization you should be vigilant about replenishing probiotics protein and electrolytes. Doctors these days seem to go with the patient request for a 5 Day Broad Spectrum Anibiotic to "wipe out everything possible" including normal flora and fauna in your GI tract. Sometimes waiting for a three day blood culture and knowing if you need a more specific Anti-viral, or anti-fungal rather than a "kill all" is recommended. I eat a yougurt every morning to get probiotics and I know a lot of people on kumbucha to replenish the gut. Just a thought.
Happy Fall blessings
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Hello Ladies,
I'm normally just a reader of this group, it moves very, very quickly. I have come to ask if any of you have had a needle guided biopsy in their sacral area. My latest PET and follow up MRI have shown a new area in my left sacral area. At first, I was told there were too many nerves to do a biopsy but my ONC found a radiologist that is willing to do it. I haven't had a biopsy in 4 years so I would really like to have it done for info for treatment plan but I'm also a little nervous due too all the nerves surrounding the area. Any info would be appreciated.
Thanks, Michele
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Hello Ladies,
A quick question have any of you ladies done colonics? I have been reading about the importance of getting our pipes cleaned out in order to actually absorb all that good stuff we are putting in there. Also it's supposed to help detox the liver anyway thought or just to gross to chat about😜
Wendy
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Patty. Hope that by time you get this you will be home!!!!
Bab
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Kaption: I had rads to the same T3 area back in May - 10 sessions in total. I was ok the first week, but the 2nd week things started getting tough. Believe it or not, WATER was the toughest thing for me to swallow. Every time I took a sip, my esophagus would spasm, and it felt like it would contract against itself. Very painful...at night especially. It got to the point where just swallowing saliva was a pain...but this, too, will pass. It will slowly get better day by day. It's just another thing that we have to put up with to deal with the mets we have.
One of my lymphoma survivor friends who had radiation to the neck recommended taking your favorite Progresso soup, blenderizing it so it's soft and mushy, and eating it slightly warm with baby spoonfuls. I never had to take it that far, but if I ever have rads to the cervical spine, I'll know what to do.
Lita
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Thank you Lita! You are describing exactly how I feel. It's reassuring to know this falls under " to be expected." I can deal with it if I know it will get better.
I normally drink a lot of water, so these tiny sips I've had to take are weird. Yes, even swallowing my own saliva is tough. My frozen almond "ice cream" helps. I've also be able to get some noodle soup down. (I know it's chicken broth and I'm a vegetarian, but I have to get something in me.)
Thank you! That's very helpful, Lita.
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kaption, it's called Carafate. It's used to treat ulcers, so it has a coating effect that is soothing. It was very helpful during the worst days. Ask your doc.
Stefanie
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Thank you! I will call him tomorrow!
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Thank you everyone for the warm welcome, it really feels good to have found this community. I got my bone scan result today; it says I have "innumerable foci ...seen throughout the axial and appendicular skeleton, at least 100, consistent with osteoblastic metastasis disease." The number freaked me out but my family doctor said they won't all be dangerous. I didn't understand why not but will ask her next time I see her. Now they are checking for mets in my chest and abdomen. Lymph node biopsy scheduled for Oct. 14. I'm trying to stay in information-gathering mode and not imagining dire prognoses. Feeling a bit overwhelmed.
Mary-Evelyn
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good read about nutrition. Will have to reread it tomorrow when my head is clearer. Feeling great just super sleeping. Thinku g about going to bed at 7 pm. Well. The world won't end. Lol
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Mary-Evelyn, my onc explained to me that the bones are considered one "organ" for use of a better word, and that 1 or 100 areas, the treatment works on all areas. Not like it will work on your leg but not your ribs for example. I had extensive widespread bone mets in almost every bone in my body but am currently NEAD. It is VERY overwhelming in the beginning especially, ask your dr for some Ativan or Xanaxfor your nerves. If ever we need it, it's at this time of our lives.
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Mary-Evelyn,
We all feel for you. We've all been in The overwhelmed phase. Feel our hugs!
Many of us see the terms meaning MANY bone mets. Some sit quietly, some hurt and bother you. You will get to know your body very well.
Best wishes on your other tests.
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Welcome home, Patty.
Mary-Evelyn - It takes a lot of time just to make sense of what is going on, from the diagnosis to the treatment decisions, to the effects of the treatments. Overwhelming only begins to describe it. Keep asking questions as they come up. Know that you can do well overall, even with rough patches.
>Z<
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Mary-Evelyn: I was diagnosed over a year ago with mets in every bone; too many to count. I've responded well to treatment and am living a mostly normal life. Wishing you all the best. It's so much to absorb in the beginning.
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And Patty hope you are enjoying your own bed. Welcome home!
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Hang in there, Mary Evelyn. We know this is tough, but we've all been there. You picked the best thread. We are here to support you and see you through all that you will experience. The women here are so loving and full of information, and it's very comforting.
Most of us have multiple mets, too. I have them in my spine, hips, pelvic bone, as well as my liver, pancreas, adrenals, kidney, bladder, etc.
On Dr. Oz today, he featured a gospel singer who is living with Stage IV pancreatic cancer, and STILL performing. No, it hasn't been easy for her, but she is very inspiring. Oz said that cancer is not the instant death sentence that it was years ago. It's now considered more of a "chronic" illness that can be managed like AIDS. Treatments aren't fun, but the side effects are manageable as many of the women on these boards can attest.
We all feel overwhelmed at initial Dx, but that too will pass. I was totally in shock for the first 3 months or so, but I'm getting into a routine now.
Sending love and reassurance,
Lita
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