Bone Mets Thread
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deanna. Love the new avitar. You look sincerely happy and healthy.
Actually I live in Arkansas not Arizona. Lol. I wish Arizona. We had talked to CTA. But they were not accepting my insurance . I have a pain specialiist and have seem him many times. Per my request my mo handles pain meds just easier to refill without SP mam Dr appts. The pain specialist has fixed 7 spinal fractures, at different times and ablated , other burned a couple times and frozen a couple times. Several tumors had grown out of spine pushing out and breaking bones. Ugh. Ive taken xgeva monthly for ,2 years and before that there was a different monthly bone supporting IV for a year. Mo is very liberal about pain meds but I've been taking them so it seems we are increasing and changing doseages and even meds many times trying to find the fix without sleeping all the tine. But we will continue to try to find the right pain relief.
Always glad to come here and see so many people not just surviving but living and that's just so exciting.
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Back to Radical Remission: I am enjoying the book! Only finished chapter 3 but it is uplifting and is there a thread started here on this book where you can comment? I have not found one on just this book, but would love to discuss the chapters.
Maybe I will pm the moderators to ask if we can have a book discussion on just one book?
Carol
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Hi All
Camping with a friend just 40 miles south of Canada. A beautiful hike today with a swim in a mountain side lake. I will be in pain for the rest of the week but so worth it. Sorry to hear of your pain Patty you are in my thoughts. Carol I love seeing your face. Deanna thank you for all your work maintaining our list. I have not read radical remission but thinking getting it with my audible credit.
You are all in my thoughts
Peace
Mary
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that's a great idea Carol! I think many people would enjoy discussing it
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Beautiful camping/hiking spot, Mary! Thanks for sharing that!
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Did they ever resolve calcium issue. My friend has extensive bone mets and low calcium
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I take a calcium supplement and vitamin d. And actually, for those who get zometa for the bone mets, it is recommended that you take a calcium supplement
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Mary, Have a wonderful time! Looks so serene and just what the doctor ordered!! Who's watering your basil plants??? Peace back at you!!
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Mary, I was instantly taken to a state of peace when I came across your photo. How beautiful, calming and simply breathtaking. Thank you for sharing.
Amy
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Mary, your photo is so peaceful. Enjoy your camping and serenity.
Patty, We are all sending you lots of healing thoughts and hoping you find some peaceful rest as well.
Terre, Have missed your cats pictures so thanks for sending the kitten one.
Carol, thats a good idea to have a book discussion. Now I need to buy the book.
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I was told to supplement with calcium for my monthly Xgeva injections. Saw my dentist last week for my routine check and deep cleaning. He said he will keep a close eye on my x-rays while I am getting my shots.
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Mary-thank you for sharing that picture-made me feel so calm and peaceful!
I supplement my Xgeva with a Calcium and Vit D combo pill as per my MO
Babs
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Loves Maltese...I appreciate your post on the bone marrow biopsy...appt with my ONC today and he understood the issue...he assured me that he had 3 pathologists check the results...PS...my Maltese "Dixie" is sitting in the family room staring at me...I love Maltese dogs !😍
Lindalou..would you mind telling me who you saw at Mayo ? Plan as of today is to start on Xeloda..next step probably Paclitaxel but I definitely will get another opinio
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I also supplement with Calcium and Vitamin D twice a day . Per my onc, on Xgeva shot day, I up it to 4 times a day.. She said Xgeva really pulls the calcium out of the bones
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Stilts, The oncologist I saw at Mayo has moved and I don't know where she relocated. I also saw a Dr. Amye Tevaarwerk at UW Madison NCI Cancer Center. She was great. Spent a lot of time with me and last I heard her emphasis is mainly women and men who have breast mets. The oncology dept number is 608-265-1700. She is also involved with many clinical trials at UW, and worked with my MO very closely.
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Mary the photo is gorgeous I can feel the space lovely nothing like the great outdoors to bring some piece.
Yes please let's discuss this great book I'm really enjoying it. The bit about the birds waking with the trees really got me.
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Well, I'm still dancing with the stable boy!! Woo-hoo!
Almost two years since diagnosis and no progression at all.
The report covering the jaw wasn't very definitive. They saw an abscess by the tooth, inflammation and chronic infection in the sinus and inflammation in one of the bones in my eye socket. No mention of degraded areas of bone, so I think that's good. I'm sure with the exposed bone, they'll still treat me for ONJ. No more Xgeva for me.
Ladies, when your doctors tell you your lytic lesions have healed, what's the wording on the CT report? Do they say they are sclerotic?
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One word of caution if I may re calcium intake. It usually is the norm to supplement with calcium and Vit D with bone strengtheners. But in my case, I was told to stop supplementing calcium because of high levels in blood due to bone mets. It's wise to check with your MO about those levels before supplementing.
Terre - welcome back!
Patty - I'm hoping the increase in pain meds is bringing you some relief.
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Mil- yes that is what my Radoilogist report of scans say when they report that lytic lesions are healing. I love that word!! Congrats on the good news.
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Wendy when I heard the birds chirping this am I wanted to go check the time. I find the book fascinating. I am only reading a chapter a day but taking notes. I also wrote to moderators to see if you can start a thread on one book. The good thing it does is it does not tell you that you should do anything. Just stories. My diet is close to chapter one. Can't wait to discuss this.
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Thanks, LovesMaltese!
According to my report, my previous lytic areas were referred to as unchanged sclerotic. I'm hoping that means they are completely filled in with calcification and I just need to wait for them to turn into regular bone.0 -
Milaandra congrats on the great results I always love the good news
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Driving to Houston for my annual check upat MD Anderson. Will have scans this afternoon and appointment with Onc tomorrow. Scanxiety is really bad!
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Would love to join the book club! I've been lurking but not posting.
Continuing to do well (my tumor markers are the lowest they've been). My pain has definitely increased, but so has my activity. I saw an orthopedic surgeon; he doesn't think there's any intervention needed at this point. I added a cardiac medication due to some minimal reduced heart function from Herceptin. Hoping that keeps things stable.
Keeping incredibly busy, including celebration of my husband's 40th birthday, our 15th anniversary, the end of elementary school for my daughter, and a million sports for my son. And the dog (Mac) is doing well, too! Adding him to our family was one of the best decisions I ever made.
I hesitate to post what sounds so positive, when I know others are having a harder time. But I hope my new normal gives some comfort to those who are newly diagnosed. A year ago I couldn't walk due to my undiagnosed spine fractures and MBC wasn't even on my radar. This year has been grueling at times, but I'mlooking forward to a memorable summer.
I keep all of you in my daily thoughts and prayers and am so grateful for each of you.
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Milaandra - So glad to hear that they don't see progression!! Now hoping they can find a quick way to deal with infection...time for pain relief for you!
Rachel - You look wonderful and the scan news is the best! Enjoy the summer with your beautiful family.
Rosevalley - Praying for pain relief, nausea relief and some peaceful and good time with your family...
Patty - Thinking of you and praying for pain free times and precious memories with your DH and sons!
Terre - Good to see you back! Wow you are busy!
Wendy - Love the dragon boat and cycling! Today would be a perfect day for a bike ride here...or I can make strawberry jam....tough decision :-)
Hi to others who are posting - thinking of you and thankful for all your wisdom (and rants)! You guys are making this journey better. Hope everyones' June scans go well. (and that there are new options for those who are showing some progression.) I have some scheduled for next Monday due to new pain, but will stay in denial until otherwise informed.
I am reading Radical Remission again and ready to try the diet. It seems that eating regular food doesn't settle well any more. I've been drinking the filtered water and lemon water each morning and feel better than when I forget or am traveling. Now on to less meat and more organic foods. It actually sounds better these days.
Anyone want to sign up and see what happens? If we did it for a month and reported back to the group it would be like book club on steroids...
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cling I know how you feel it's horrible. I think sometimes nothing can be as bad as I'm imaging it to be. Why do we always think the worst rather than hey maybe it shrunk. I even have imaginary pain leading up to my appointment then after it goes away. The mind is very strong, I heard a good quote the other day " if we are always thinking the worst scenarios then we will live through it twice". So now I try and think only good and when the bad does turn up I will deal with it.😊v
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Bluefrog, another terrific photo of you and your family, and Mac. So happy that you at making the mot of every day.
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Wendy, that's a great quotation! I'm going to print it out in a nice font and post it on my fridge!
Bluefrog, lovely family, but I'm particularly enamoured with that wet black nose
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Milaandra, WOOHOO for the good report. That is great to hear.
Mary, Thank you for the picture. That looks like a beautiful spot to sit and relax.
Patty, I hope you are feeling better.
Cling, I am thinking about you as you have your scans and onc appointment, I hope you hear good news. It is really terrible that we all get so worked about about scans. I wish a had a solution to keep us free from all that worry.
LindaE, Thank you for the warning about calcium supplements. Even something as common as that can cause problems for some of us. Ugh!
Lindalou, When will your husband have his blood tests? That date must be coming soon. Is he nervous? Are you doing okay? I will keep you both in my thoughts and prayers.
Lynne
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Kathleen I will start a radical remission thread. I am doing the diet and have been really since Oct. I will let everyone here know when I start it. I am not good at things like this. What topic should I put it under? Thanks.
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