Bone Mets Thread
Comments
-
z,
This is great news! Go and celebrate!
Ronnie
0 -
Lynn - Somehow, the brain/neck MRI request was lost in our medical system here as was the request for abdominal US as well. And this even though my MO followed up from Florida on her vacation. GRR. I saw my MO today who will personally arrange for MRI to happen this week with stat results. My speech slurring is worse, headaches are overwhelming and tongue is still swollen. MO has 2 possibilities in mind, first one is bone mets in cervical area may be pressing on some cranial nerve or the second would be brain mets near the hypoglossal cranial nerve. I started Decadron and Lyrica today to help alleviate the pain and symptoms. I just want some kind of relief, I never felt so bad since dx.
I'm keeping up to date with everyone on the thread but have been mostly reading and not contributing much, I don't feel well enough. But my thoughts are with all of you and smile every time I read good news or lift you in prayer for those going through scanxiety or progression.
0 -
Oh, Linda...DOUBLING DOWN on prayers for you, sweetheart! This totally sucks.
I am encouraged that your Dr isn't sitting on this. Hopefully you will have an answer and an effective treatment plan to alleviate your symptoms soon.
HANG IN THERE!
0 -
Linda~Sending gentle hugs and prayers that you will be relieved of your pain and the doctor will make it quick! ~M~
0 -
LindaE, It is just horrible that the MRI request was lost! I had hoped that your symptoms had improved and am sorry to hear that they have worsened instead. I am sending prayers up for you. I do hope you have answers and find relief very soon. Please don't worry about posting. We all just want you to get better.
I really hate this disease.
Hugs and prayers to all, Lynne
0 -
Good Evening Ladies,
It's been a long day, but Kaption just made my day with the news of her "Best Scan Ever". Can we add "BSE" to the list of abbreviations?
LindaE, praying that your medical team gets to the bottom of what is going on quickly, and that they come up with an effective treatment plan.
Good Lord this page moves fast. I had to go back two pages just to see when the last time I posted (about 48 hours ago on Saturday night).
A lot can happen in 48 hours. KD started off with constant diarrhea Saturday afternoon. That was a blessing in that it got her jump started on eliminating some excess fluids.
Since Friday night, she has lost a whopping 12 pounds. Normally, that would be a great concern, but in this case, we are Thanking God for diarrhea. Who would ever have thought?
Prior to Friday, she had gained about 25 pounds in water weight over the previous week.
So, yes, she is much improved. She is up "walking the halls" 3-4 times a day, drinking 3-4 whey protein shakes a day, and trying to eat what solid food that she can. Today she managed to eat a couple of scrambled eggs, a few bites of baked catfish and some of her mom's homemade chicken and dumplings. Nobody is ever too sick for homemade chicken and dumplings, right?
We are praying that she continues this drastic improvement. Maybe we can start thinking about ending this hospital stay after all.
Thank you for all of your prayers and concern. You ladies give me so much hope.
One day at a Time,
Louis
0 -
Louis~ I am so glad I logged in one more time before bed. Please let her know everyone is thinking of her and sending prayers. who would have ever thought we'd be thankful for the runs!! Big prayers ! ~M~
0 -
Wow. This thread today. The ups and downs of dealing with cancer. Endless hugs, prayers, healing and, well, diarrhea to everyone who needs it.
Linda - I am always deeply concerned about people in pain. Please pull every string you can to reduce the pain and give us a brief note each day on your progress. Very concerned.
>Z<
0 -
Linda, gentle hugs and prayers for sure! We're with you!
Louis, goood news on the improvement. Her system is working and she must feel better getting some of that fluid out. On the way to feeling better and going home for sure!
0 -
Kaption, what great news!!!! Yea!!! Am very happy for you!!!
Linda, will be stepping up prayers for you!!!
Louis, so glad to hear KD is doing a little better! Continuing prayers!!!
0 -
Louis so glad KD is doing better!!!! Who would have thought that diarrhea would be a welcome occurance! Boy does bc change how we look at things!
Linda sending you hugs and prayers. I'm glad your mo is on top of things!
Babs
0 -
Linda, special prayers for you! Hope they get to the bottom of your issues and you feel better soon! Louis, so glad to hear your wife is feeling better! Cancer certainly is a roller coaster ride that nobody wants to be on. Thank God we have each other here!
0 -
Thank you all for your support. What would I do without you all? I woke up with no headache this morning. It must be all your good vibes!
0 -
kaption- Yay! Best news!!!
Linda- the lost orders for your imaging= big fat unacceptable. thinking of you often; hope this gets sorted out quickly.
Louis- great to hear that the fluid is making it's exit! She's on her way up!!
Love to each, MJH
0 -
Doctors orders: Take 2 threads, drink lots of water and you'll feel better in the morning.
0 -
Wonderful news about KT, Louis! She must have been so miserable carrying that extra 12 or more lbs. of fluid. Praying things continue to improve rapidly now!
Linda, I'm very concerned about you too. The 3 issues you're dealing with are just so unusual, I'm praying, as we all are, that your MRI is clear, but also that the cause can be unraveled quickly. Are you getting any relief today from the two new meds? Hope so! Big hugs & prayers that whatever this is, it's just a temporary low point and things will turn around quickly once it's figured out.
0 -
Thank you Deanna - I'm having a nice break from headaches today. Don't know yet if it's the new meds working or if it's just one of these few are far between good day. The next few days will tell. Hospital called for MRI, it will be only next week even though MO was aiming sooner. I was even willing to go to a private clinic and pay for it out of pocket but they don't have any availability until next week either. Abdominal US is also scheduled for next week so things are moving along.
0 -
LindaE honestly what kind of a backward place is Montreal??? 3rd world Country??My sister lived there, she paid out of pocket to get a surgery and the doc(officially it was not allowed). I wanna hug you so badly. How can we help?? Maybe you call MO again? How could they not see the urgency of getting to the bottom of your issues. I don't know what we can do for you? Travel to a nearby town?? Of course congrats on the rest but...let MO ponder what else could they do???? What about some steroids for now, would that make a difference? Love ya!!!!! I am shaking thinking of what you must be going through.
0 -
Kaption that's just great news! Enjoy!
Deanna yeah, everything seems to have a new dimension. Happy that the numbers are just so high, or as you say happy to be back at treatment. Good luck. Thank you for letting us know about Carol. It's so weird that in a place like DF they would not know what's bothering her. Aghh I read your note about Cristina. The kids. This is the worst. Thanks.
KD-s husband so happy for you, I pm'd you.Keep up the good work.
Zar you know because of you I relaxed after so many years, and finally don't hold back D from some form of exercise. She looks for my approval of her activity level. I used to cringe when she would go up the steps. They bought a treadmill, she goes on it, of course just kinda of fancy walking, she went bowling (took the light ball), skiing (I was beside myself but said nothing), more like terrain walking but before I was afraid she was just gonna move due to all her skeleton mets. I thank you for that.
Lita your pictures are always such an inspiration. To new normal! Love the bodyguards. You are the type of a person that people want to gravitate to. Hope your really hit the sh..t of this monster very soon.
0 -
Wendy so glad you are ON something. The Hot flashes are a horror in itself. Dani had it in her 20's, and when no one knows what's going on, it made for many difficult situations. It tore my heart, that's for sure. I wish I would have known these wonderful secrets like Lulybee told about Effexor and mentioned here also the other stuff, it could have made life so much easier, why on earth would the MO's not be up to date in these things??
Babs I just read about your wrist, fall and TM's – what's doing now? How are you feeling? Wow that musta been quite a scare. Gorgeous pictures from the family. They seem so happy, that's the best. So you started Gemzar?
Chelle oh my goodness. I feel so bad for you. This is just crazy. Police officers are up there as Heroes! It must be really hard for the family. Like if you needed xtra stuff in your life. It's gonna be rough, but look at the light at the end of the tunnel.
Lynne waiting with you for your Husband's scans. And if you meet Carol pls do send her our love k.
Jensgotthis good for you to hear good stuff.
Dianarose how is it going? What happened with your niece? Got the results back?
0 -
Delvzy so sorry to hear about that. It's just not fair.
Lilliemillie it looks like a good combo,it's about time it got to the UK.
JFV is sad to welcome another newcomer, but this is the place to be.
Denise as you will see her, many people find themselves in the same situation. Shock. No it should not have been. It just creeps up. Let us know what you find, and everyone here will help you along
0 -
I had to read about 10 pages back, i wanted to know how everyone is doing. It's very hard not to be on here, I miss you guys so much, and I truly find great comfort in these pages. It's been hectic taking care of my Uncle, but now he has a treatment plan so all is much calmer. By the time I get to the computer I am zonked. So sorry I left you hanging and I appreciate the warmth and caring from the pm's.
Dani is coming along, this week is the 3rd cycle of 2 weeks. She is tired and has constant nose bleeds, but otherwise it's definitely doable. But her TM's were creeping up, so they will decide if they will do the scans sooner or wait till the end of the protocol.
It's been quite a shock to see so much angst in the last few weeks, really hard to read it through.
0 -
Linda,
Sending positive thoughts and prayers that you will find some relief soon.
Ronnie
0 -
Mommal, first I'm so happy to hear from you! I missed you. I live a bit out in the boonies, I can't speak of what our medical system is like in Montreal these days but even some 7 - 8 years ago when late hubby was treated in Montreal, there were major problems. Our system is inundated and just can't keep up with lack of resources and budget cuts. It's super frustrating! Docs and nurses are very dedicated but overwhelmed and things fall through the cracks. And I always follow up on all requests - can you just imagine if I just sat around waiting for them? Yes, I started steroids yesterday (Decadron).
0 -
Thought I would post an update. Had my first blood test since starting Letrozole. On Feb 15 when I first found out I had the mets the CA 27 29 was 312. Today I got the report and the CA 27 29 is 311. I have the next blood test in 8 weeks. This looks good to me because at least the markers are not rising.
I started taking Artemisinin on Monday. I did a lot of research on it and I have read of some other ladies on the forum who have or who are taking it as well. I figure if there is no downside to it what do I have to lose. Anything that helps to kill the bone mets. I also take Turmeric daily and vitamin D.
Chats
0 -
LindaE good for you, at least I wanna feel close to you. Kisses and hugs.
0 -
Chats what about scans?
How much Tumeric do you take? I'd be interested for Dani.
0 -
Hi everyone, My dh's scans show no mets. WOOHOO! All set for another 6 months.
I wanted to let everyone who knows Carol that I stopped in to see her yesterday while I was at Brigham and Women's. She was asleep when I arrived, but her DH woke her up to let her know I was there. Her DH is by her side round the clock. She seemed very happy to see me, and I had a nice long visit with her. DF is still trying to figure out the source and resolution for the pain she continues to experience. I hope they get her some relief soon. She wants to feel good again. She told me that she was so happy to see me that she would probably cry after I left. She knows that everyone here is thinking about her, and she prays for us all. I was hoping to visit her again today, but I had some serious kidney pain that kept me home. I really wanted to visit again.
Louis, I am doing the happy dance for you and your wife. A big WOOHOO to both of you. Recovery will be gradual, but it will come. Big hugs to both of you.
Lynne
0 -
momallthetime
I had scans right after the blood test in February. Came back with innumerable bone mets. According to the onc they were small mets on ribs and around pelvic bones. I was having a lot of pain in my right leg joint but assumed it was sciatica which I had before and because I have degenerative disc at lower back. Well, wasn't that. It was bone mets.
I take a brand called gaia that I get at Whole Foods. It's extra strength and if I can read the ingredients properly on the back it looks to be about 475 mg per tablet plus black pepper which is supposed to be essential for absorption. I take two per day. A friend of mine who had/has multiple myeloma was treating with doses of Turmeric and did not want chemo. She was told by her onc that she was doing better than patients on chemo. Also since it's a great herb for arthritis I told my husband who started taking it and has gotten great relief. I also started taking it prior to my finding out about the mets because I had joint pain from sciatica etc. Now of course my focus is on killing the bugs.
Chats
0 -
Lynne first of happy dance for YOU! What a relief. You guys need a break. Sorry for your pain. How special of you to visit with Carol. Thank you so much for the message back! She is in our prayers.
Chats thanks so much, she really doesn't like to take a/t but sometimes she just says yes, so I gotta be prepared. I have heard for a long time that this is good stuff. I am glad you are taking it. Thanks so much.
0
