Bone Mets Thread
Comments
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Lita, love your patio and your attitude. Enjoy your slice of paradise and cuddle your dog. Praying for you!
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Babs! Good for you! How special! Keep it up. I was just at a wedding, and they left little wooden pieces we should write advice for the couple – mine was simple – YES HONEY (for both), that should work 😉
AnimalCrackers so many times I have spoken to ppl that tell me how happy they are, they would never have married their husband in their younger years, and they would have missed out.
Tarhee – Lindalou – so sorry for the agony, what about Dilaudid, like with you Patty that really helped Dani.
Claudia – as far as I know Tramadol is a fancy aspirin, I don't find it strong. I hope you could find relief soon also.
Lita so nice that area! People that live in the city, like us really appreciate ANY space with some peace and ANY greenery! And yes, RO keeps saying she won't be able to radiate twice in the same area, so she is very cheap about it, I hd to beg for her to find a way around the C1 which otherwise would have required surgery.
Patty how is it going with the kids? The report is IN but we could not talk to doc yet, either is good so she is not in a rush, or it's bad and she's figuring things out, trying to keep distracted but it's getting difficult. Sure hope she still calls today. It's not in the portal yet, so I can't see it. Ughhh
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Momallthetime, praying so hard for some positive scan results for Dani. She deserves a break from all she's been through. Sending healing hugs!
Lita, you are a beacon of strength! Loving your outdoor patio, enjoy every minute.
Babs, how amazing for you to be on this trip and I couldn't be happier for you. The pictures are beautiful and your daughter has the most radiant smile, just like her Mom.
Iwrite, I've been taking Boswellia with turmeric for over a year now. It has helped me in more ways than one. I've also been applying Frankincense topically since diagnosis.
Hugs to everyone here, I keep up to date on everyone but don't post often. I think about and pray for all of you daily. So much strength and compassion here!
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((MOMATT)) Thinking of you and Dani always.
>Z<
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lita. Nice patio. How relaxing.
Momatt. Ugh waiting. The hardest part. Hoping results are so wonderful they are in no hurrry.
Had another horrible day today. Just woke up and feeling better. Tomorrow is my day to pick up boys from school and keep them until tues. hate being sick ever but ESP during my time with boys.
Hugs
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Hi all, Sharing this picture of where I live In Perth, Australia. This is the sun setting over the Indian Ocean. When I mentally go through my Gratitude List each day, this is one of my favourites. Nature is so grounding yet uplifting and gratitude is what gets me through each day and keeps me in a happy place.
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leapfrog. Absolutely wonderful. Thanks for sharing
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Babs, great pictures! Ouch to the gash!!!! My lymphedema arm is still swollen too and every little scratch I freak out, so a gash would be scary. Hope it's healing. Your daughter is so pretty, and she has that glow!
Z, am so sorry you are dealing with pain. It's horrid and robs us of our joy. But opera!!! Yes, please!!! I love opera. Glad you got to go and I hope you are feeling a little better!
Momall, have been thinking of you and Dani...hope things go well this week, you two are due some good news!!!
Lita, I'm also dealing with increasing headaches and now some dizziness at the strangest times. Am going to tell my onc on Tuesday when I see him. Hoping yours turns out to be nothing ! It scares me a little because I don't think my oncologist will do radiation on me. I was diagnosed in 1999 with lupus, and they don't like to do radiation on lupus patients because our skin doesn't heal. So if it ever gets to The point where the pain is really bad or it has moved somewhere else I'm afraid they'll tell me I can't have radiation.
So I have seen a cancer wellness specialist now twice. He did a lot of evaluation, and today I actually did a circuit of weight training. I seem to have done OK on it but tonight my hip on the left side which is where the cancer is in the hip and the femur is just hurting like crazy. I've already taken my lorazepam for the evening and now I have to wait six hours before I can take a painkiller. I just hope I haven't broken anything. That would really suck
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Leapfrog - That picture took my breath away! That is magnificent! Australia seems like such a beautiful country!
Gracie - Surely they know what they are doing at the wellness center. You are in my prayers.
Claudia
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Lita I'm coming to visit your patio-so relaxing!
Yesterday we toured from 8 AM until 9 PM. Cesaria, Tiberias, Akko, Bahai Gardens plus more
Today we're in Hotel Beresheet in the Negev Desert- the most amazing hotel ever. Pinch me this must be a dream!
Babs
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babs. Love it. Got me watching everyday for your vacation pics.
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Babs thanks for sharing your amazing vacation photos! I want to go away so bad and just take in the sites! Until I can find time and money to do that I will live vicariously through your photos!! Hope you are feeling well and enjoying yourself!
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Today's pictures of the most incredible hotel ever!
Babs
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Cathy- there will come a time when a trip like this just won't be possible and I hope there's someone else who will post so I can live their dreams with them. FYI- Dang the money-our life expectancy certainly got shorter when we were diagnosed Stage 4.
My advice to all is do what you can while you can-thank god hummingbird listened to me. (We were very close) She took an amazing trip just 3 1/2 months before she passed based upon my urging. So I urge you all to please listen to my advice!!!!
Have a good night- it's night time here,
Babs
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Babs - Thank you for allowing us to be a part of your beautiful trip! Can't remember if I said this before, your daughter is gorgeous! Also, thank you for your great advice! My Dh keeps telling me that too, but I don't want to leave him with no money forhis retirement. He is only 56.
Momall - Thank you for thinking of me! Have you heard anything about Dan I? I think about you two all the time. I have been praying for good news.
Has anyone heard from Chelle? I am growing more concerned with each passing week, about her and her Dh. I know he had surgery in early August. I hope they are doing well.
My biggest frustration with the knee and hip pain, is how can we address it properly if we don't know what is causing it. One doctor says it is osteoarthritis, the other one says there is not enough to cause this kind of pain...Argh! Hip, they are all worried about more cancer. I completely disagree. My tumor markers are great, no uptake on Pet in July, I think a fracture is more than likely. Anyway, the MRI should tell the sorry.
Hugs and prayers everyone
Claudia
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sending prayers to all who deal with this awful pain....I'm early on this road. I do have very bad arthritis on my right hip and ankle. All mets on the left side and they just ache sometimes esp spine and femur. Pain wakes me sometimes.
Loved the pictures of Babs at the wedding. I'm down the shore right now. Very rough water so no swimming for me... afraid to fall. I love the ocean. It's my happy place. Heading home next week. We have lots of company. My children and grands. Friends from around the state. Everyone pitches in. My DIL cooked the last 2 nights. She's wonderful.
Beautiful patio Lita. Enjoy.
Faslodex #4 last Friday. Claritin helpedback spasms this time. Next month Faslodex and Xgeva and a visit to MO. Nurse who gave Faslodex hit the wrong spot on the left side and I saw stars for an hour after but fine now.
Mair
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Sad news this morning regarding RCG77/Raewyn. This is what her husband posted on the Triple Negative Thread. May she rest in peace.
"This is Raewyn's husband. Sad to report that she ended her fight on Aug 14, 2017 early morning."
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Sad to hear of another passing. Rest In Peace Raewyn
Babs
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I'm so saddened to hear of Raewyn's passing. She had just enjoyed a beautiful trip with her family on August 3rd. Rest in peace Raewyn.
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Loving the pic Babs looks so wonderful I hope you are feeling well and enjoying yourself.
Momallthetime I'm terribly behind again how is Dani doing? My eyesight is giving me a bad time of it walked into a glass door the other day in a cafe so embarrassing. So it's hard to read a lot. I hope you are both doing well.
Linda how are you doing still on Taxol. Two more infusions for me then nothing.
So I have a question for you ladies. I have never had surgery and my oncologist is talking lumpectomy I know there are many schools of though on this and because of that I'm very torn. Remove the tumour now or leave it. Such a hard decision, anyone else still have there original tumour
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I still have mine...it's considered "occult, amorphic" and would we very hard to remove, considering it's rather diffuse. They're keeping it in place...for now.
The brain mets, well, I don't know WHAT they're going to do about them yet. I'm going in for the MRI in two hours. Listening to Vince Guaraldi and Bola Sete play Bossa Nova while I write this. ANYTHING to keep me from freaking out. I can barely eat or think. Headache kept me awake most of the night. They don't want me to take anything stronger than Tylenol in case they want to try surgery. As you all know, with Tylenol, you might as well be swallowing Tic Tacs for all the good they do. So I'm just toughing it out for now.
L
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Wendy, I have not had my primary tumor removed. When I was first diagnosed, I was told about a clinical trial that was being done to see if surgery for stage IV patients would improve outcome. Surgery would have been a mastectomy, not lumpectomy. At the time I was thinking that my survival time would be limited, perhaps to only months, and QOL was of utmost importance to me. I didn't want to spend time with surgery, recovery, and radiation. Of course, now after two years and lots of research, my thinking has changed, and I realize that I could live for many more years. Because of the nature of the trial, I suspect that it will take a long time to see any results. For a while, I wished that I had participated in the trial although I might have been in the population who did not have surgery anyway. Now, thanks to my body's response to Ibrance and faslodex, the only remnants of the tumor in my breast are scar tissue and an amorphous area on my chest wall. The BS who told me about the trial and was following me for over a year and a half, no longer sees me although she continues to receive reports from MO. Over the past two years, my thoughts about surgery have gone back and forth without any sense of certainty or comfort. There is no clear-cut answer. My BS thinks there might be an advantage, especially for people with a low tumor load, but she admitted that it is one of the most controversial subjects for breast surgeons. My MO thinks that the trial results will show that there is neither an advantage nor a disadvantage for stage IV surgery. I have read many opinions about it, some saying removing the primary tumor would decrease or slow down spread of mets while others say the surgery could increase mets. The fact is, no one knows! Here are my questions for you. Would you feel less stress if you knew that your primary tumor was gone? Would the surgery be a lumpectomy? Does your surgeon think the tumor can be easily resected? Do you feel strong enough to go through surgery? If you answered yes to all these questions, I would go for it, and don't look back. If you answered no or have any misgivings or doubts, don't do it, at least not now. Trust your gut.
Lita, I will be thinking of your as you have your MRI. I hope that find the best treatment to relieve your symptoms quickly.
Hugs, Lynne
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Lita, I'm sending good vibes your way, I hate that you can't seem to catch a break with the pain and now this?!
Wendy, my MO and BS we're in line with 50sgirl's. However, surgery was part of my initial plan, I am oligometastic with a single hip bone met and from the beginning I was told I'd be treated with curative intent and as if I had a chronic disease, which helped my state of mind. As far as I know, one study says surgery is good, another says it's bad but both are flawed. I Had a lumpectomy with ALND and a reduction/lift on both breasts a month 1/2 ago (the drains sucked!) but I'm almost fully recovered and feel good about the results and decision.
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Wendy - I'm finding Taxol rough, although I have a tad bit more energy these past couple of days. Seeing MO on Tuesday and will ask her when she plans to give me a break. I suspect she will want to wait after a Sept scan.
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hi,
I completed four rounds of chemo and had my first post chemo ct scan and bone scan today. My MO is on vacation so I spoke to the nurse who read the report and basically said no change in size of tumors or locations. She mentioned that they look for stable or decrease in tumors to determine if chemo is working. I am on taxotere, Herceptin and perjeta. I am not doing well with the taxotere because of the side effects have contributed to a decrease in 25 lbs weight loss since June 5th. I'm kind of in shock that after four rounds nothing changed. I thought maybe some decrease would happen. I meet with my MO on Tuesday as I had an infusion apt already scheduled and to discuss the results of the scans. I'm not sure whether to continue with taxotere if it's not significantly decreasing the cancer. Any suggestions on other drugs? or questions to ask my MO?
Thanks,
Wemma
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hey ladies. Pretty quiet in here. Hope all are out celebrating Labor Day. Bye bye summer.
Ds1 and I spent most the evening together just talking and went to eat. It was great having this one in one time. Amazing what they will tell me if I just make myself available and don't freak out in everything they say.
Hugs
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Hi everyone,
Haven't been on in awhile (one of those BCO breaks some of us sometimes have).
Lita, I was so shocked at the news you received. I am so so sorry.
I just read four pages and can't remember much of anything except Lita, so please forgive me.
I'm on an Exemestane/Afinitor combo. It's been difficult trying to get on the Afinitor but I think I finally did it.
I continue to make plans for vacations and trips. Going to PA next week to visit friends for a few days. A women's music festival the week after that. A 5-week long trip to SC in October to spend time with my best friend and her husband, which will include a seminar in quilt show judging, a 3-day quilting retreat, and a week in the mountains at their timeshare. And then a 7 day cruise next April courtesy of my partner. I don't plan on missing any of these activities and I certainly plan on making more. I'll just sleep in between, lol!
My energy is very low. I go to the gym because they tell you that exercise helps you to get energy. The only thing it seems to get me is more tired, but I'm going to keep at it.
Anyone heard of OsteoStrong? It's a method to have your body naturally build bone. I've had one session (get two free) and am thinking of joining up for a program because of my osteoporosis.
Back to the recliner...
JJ
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Wendy -
I could have had a breast removed early and I still can but I am not doing it. I posted this on your facebook discussion of this, but basically I am not healing like I used to. Did some research and confirmed that estrogen plays a role in wound healing as does a functioning immune system, both of which are severely impaired by the hormone suppression and ibrance protocol. I think they brought it up for you because they see a unique opportunity between treatments for you to take this on with your immune system unimpaired. They are thinking, how can we use this opportunity to put Wendy in a better position?
So that may be the way to think about it. What do you think will put you in a better position? A period completely off of standard treatments where you can focus on your overall wellbeing and complementary protocol or a lumpectomy? Lumpectomy is not a terribly hard procedure as these things go, but it will still keep you off the dragon boat and occupy your time with doctor visits and medical stuff.
My gut feeling, for myself is that surgery will likely help about as much as the surgery process will compromise my overall well being... resulting in a wash. It didn't seem like a good investment of my attention and effort even before I started to consider the wound healing issues ... we only have so much time and energy. Then then wound healing issue took it entirely off the table.
>Z<
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Forgive me for posting this multiple times, but i'm trying to hit as many threads as I've been active in during the last year....
Dear friends, it is with the utmost sadness that I write this. I went for my brain MRI today, and I received the results a couple of hours later. It's way worse than I could have ever imagined. The dr is amazed that I'm still standing…I have MORE than 20 brain tumors and I also have meningeal activity in the lining of the brain, which is very hard to treat. Cyber knife is not an option as the tumors/lesions are sadly too big for that. I have elected not to have "whole brain radiation" because it would turn me into a zombie/vegetable (given the LARGE amount of tumors I have), and I would no longer be me…just a body lying in a bed, waiting to die. I have elected "hospice care" and will be signing up for it on Tuesday, after the holiday. In the meantime, I will try to finish my third novel in the Bullmina Bulldog trilogy. The dr says I have only weeks, maybe a couple of months left. I am losing vision in my left eye, and the headaches and dizziness are considerably worse. I have been given a Rx for steroids to help with some of the pain and brain swelling;
This is quite a shock, and my family and I are still processing it. I had hoped that I'd have maybe another year, but that's not to be the case. In the meantime, I'll just try to get by on steroids and medical marijuana. My family is devastated. Please pray for them.
Blessings to you all, Lita
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Oh lita I am so very sorry. I just wouldn't have thought those results since you seem so alert and aware in your texts. What s heavy load. I will be praying both for you and your family. If only I had a magic wand. Hugs. Try try to get some rest tonight.
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