Bone Mets Thread
Comments
-
Myra,
So sorry to hear you've received his bad news. It great that you have a good team assembled to address treatment. Getting final paperwork and arrangements in place is an important thing we can give our families. Keeping up the positive support must be so tough for the guys. Hope you can schedule some times for hugging that darling baby in the days ahead!! Being in the moment with our families is rich. Sending good thoughts your way.
Kathryn
0 -
Hi,
Just back from a full on week in Auckland, so behind as usual.
Myra - how awful and what a shock! Sending light, prayers, and hugs your way. Hoping the treatment plan gets things under control and stable ASAP.
Maine - sorry to read of your progression as well. Good luck with the new treatment - please keep us posted as it's something that's quite interesting as it's so new. Fingers and toes crossed that it kicks the progression to the kerb.
Amy - sorry you're going through a rough time.
Chelle - that tree looks like straight out of a magazine. Wow! Sounds like a busy Dec, but what fun.
Hoping to get caught up soonish. Have two lots of momcats with kittens to get to Kitten Inn this weekend. They have over 270 kittens in-house/fostered out. Just insane. Can't weight for the holidays - taking the week between Christmas and New Years off work. We get Christmas Day, Boxing Day, New Year's Day and the day after New Year's as holidays. So I'm only having to take 3 days of annual leave to get 11 days off work (including weekends). Hooray!
Hugs to all.
Terre
0 -
0
-
Thank you, Terre
0 -
Myra
I am crushed with you and this awful news but with a good treatment plan in place and the love of your family and friends I feel you will recover. Sending my thoughts and prayers.
Amy
0 -
I went to Gilda's Club at the hospital near my apartment and I'm glad I did. It was great to be in the company of other people who have an idea of what you are going through. They were all really positive and made me think, "I can get through this too!" I am looking forward to the next meeting.
0 -
Hello everyone,
I am so far behind, I feel like I will never catch up, so I will just say that I hope everyone is doing ok.... I know some of you aren't...
hugs to you.It's an ugly day here with winds & rain, the power has been out since 2pm. Hydro didn't even know the power was out until I called a few minutes ago, isn't this why they have "smart meters"??? They are supposed to be smart & know when the power is out?
Take care everyone, I will try to get caught up on my reading. Cheers, Dee
0 -
Hello everyone! I am so heartbroken to hear so many of you are facing such challenging times. Amy, you are by now with your family in WA. I hope that there are special moments and great conversations for you all. I know that the months before my sisters and fathers deaths, we had some really great times. Just talking and understanding that this is the end, it's ok and it really felt as if it were the right time for each of them to pass on. It's very difficult to put into words. But there is a certain feeling of acceptance that we all got from those conversations.
Myra, I am so sorry to hear of the progression, but I am confident that a new tx can kick it to the curb! Just focus on Mallorys beautiful smiles.
Party is over and am now in full scanxiety! I have a pet scan on Tuesday. My first since dx in September. I am trying so hard to block it from my thoughts. Staying busy helped. Love to everyone on this thread! Chelle.
0 -
Chelle, WIshing you good result from your PET on Tuesday. Loved the photo of your tree and decorations.
Rushjackson, I've heard a lot about Gilda's club and so good that your experience with the group was positive.
Lynne, How did the first consult go with your dh on Friday? Another one tomorrow right? Difficult time for both of you. My dh will pass his 2 year mark with prostate cancer next week. Hoping his tests are ok too.
Terre, thanks for the info. 11 days of vacation will be heaven for you. Chance for you to settle in to your new home.
Kathryn, what treatment are you on?
Hi Deanna!
I've been mapped, mold made of face and chest and ready for rads as soon as insurance approves. Hoping to start next week.
Thinking of you all.....
0 -
wow chelle it is beautiful .I wish I was that talented ...chris
0 -
Hi everyone. As usual, I am way behind on this thread.
Dee, I hope you have your power back soon. It sounds like the weather is pretty miserable out there today. I hope the sun returns along with the power.
Cristina, Are you feeling better?
Rushjackson. I am glad that you are benefiting from the Gilda's Club meetings. How often are the meetings held?
Terre, 270 kittens? Holy moly, that's a lot of food and litter that is needed. Do you receive a lot of donations to keep the organization going? Enjoy your time off.
Maine, I am sorry to hear about your progression. Let us know how your treatment is going. I will keep you in my prayers.
Myra, How are you doing? We are all here supporting you.
Aurora and Carol, We haven't heard from you lately. Are you doing okay?
Daughter, I hope you and your family are doing well and are enjoying the holiday season. i hope your mom is feeling better. I know from experience that she just wants to enjoy you and the rest of the family right now and wants to protect you from feeling fearful for or worried about her. It will get easier.
Mom, I hope you are fully recovered from your recent illness and are taking care of yourself.
LindaE, Are you feeling better after all that has happened to you? Make sure you take time to fully recover. Be kind to yourself.
Lindalou, it is so sweet that you remembered about my husband's appointments. We were very pleased with the dr we met with at Brigham & Women's/Dana Farber. He confirmed that it looks like stage 3 kidney cancer. He said he can remove one of the kidneys, separating the horseshoe that connects it with the other kidney. A vascular surgery will also be in the OR to remove the tumor thrombus from the vena cava and take care of the affected renal veins. This is much better news than we expected. The PCP thought that the procedure would not be possible and that they would have to shrink the tumors, then remove only the mass and tumor thrombus due to the horseshoe kidney. That would have left a greater likelihood of leaving more of the cancer in the kidney. We were impressed with the dr's approach, his attitude, his experience, and his ability to make my husband's case seem important to him. He set up surgery for the 21st. He was hoping for the 17th, but the vascular surgeon had to clear his schedule and the 21st is earliest it can happen. The PCP has already called my DH to discuss a call he had from the specialist after the appt. We will meet with a dr at Lahey tomorrow. The dr at Brigham said that Lahey also is a great place for this specialty and said we can cancel surgery with him if we decide to go to Lahey for treatment. My DH is very comfortable with the first dr, but we shall see. If we stick with him, DH has to be in Boston at 7:00 am Friday for another MRI and pre-op testing. I guess we will spend Thursday night in Boston.
Sorry for the long message, and way too much of it is about me. I am thinking of all of you. Thank you for your support.
Oh, good news, my Christmas shopping is finished, and everything is wrapped. Woohoo! I have to admit I am really feeling wiped out today.
Lynne
0 -
Chelle, sending all my positive mojo your way for your scan on Tuesday. Loved your tree, absolutely breathtaking!
50sgirl, I'm happy to hear there is a plan for dh and that the news is much better than you expected. Sending positive thoughts for a successful surgery and speedy recovery. Congrats on being all done shopping and getting everything wrapped, I can only imagine how wiped out you must be.
Dee, I hope you've got power back. Yep so much for those smart meters!
Terre, hello and oh my goodness you are one busy lady. Thinking of you always and please try to relax on your 11 days off.
AmyQ, thinking of you and sorry you're going through a rough time right now.
I've been a little absent dealing with issues of my own. I just haven't been right since I had that incident with the acupuncture but I think of each and every one of you daily.
Hugs to all, Annie
0 -
Hi all, haven't posted on this thread in a while so going to try just jumping in here.
Myra, so sorry to hear your news. I'm sure it has knocked you off your feet for a bit, but you are a strong person with a great medical team, and those damn skull mets are treatable, so I know you will get through this! Nice to have the EOL stuff done, but I bet you won't be needing those arrangements any time soon.
Lynne, Thank you so much for posting about your husband's condition. You don't "know" me, but you have a special place in my thoughts as I learned I had mbc just after retiring too. Can't imagine what you are going through after learning DH has cancer too. Sounds like you have access to some great medical facilities, that means a lot! Sending you both a hug and a wish for many better days and years ahead.
Terre, I've been having trouble keeping up with this thread, but you must be in your new-to-you house by now. And then whisked off to Auckland for a week? Now back to save some more kitties? You continue to shock and amaze! Please spend a little time resting during your days off!
Chelle, Try to stay busy, busy, busy! I know it's hard with that first scan coming up. Will you have to wait long to hear results? Will be thinking of you and hoping you get good news! If you need more to keep you busy, would you please come and decorate my house for Christmas too? (Joke)
AnnieO, Have been wondering if you recovered from that acupuncture yet. Sorry to hear you have not. I know how discouraging it is to try and do something to help yourself and having it set you back instead! Sending a big hug and hoping you get back to feeling better soon.
Chris59, So nice to see you again! Sorry to hear your TMs are up, but it's good you mo wants to scan, then you will have better information to go forward with. Hope you get your pain under control soon too. Sending love and hugs west to MT!
Amy, I'm so sorry this may be a last visit with your Dad. I know you will make it through this difficult time and I'm sure seeing his little girl again will be a great comfort to him.
Dune & Patty, Hugs to you today and always!
Sorry for not addressing all, I so appreciate everyone's posts.
0 -
Hello everyone and sorry to ha dropped out for a while somehow the thread dropped from my fav threads. Myra sorry to hear about your news and praying for successful treatment. Lynne praying for you and your DH. I'm still recovering from my hip replacement surgery and still have a drain in the incision but at least I'm home. Next week it's an exciting week as my best friend from Mexico is coming to stay with me for a month and my daughter is graduating from law school on Thursday.
I skimmed through the pages but know that I'm lifting you all in prayer for pain free se free successful treatment week.
Aurora
0 -
Myra my daughter has mets all over her skull, the dura was being pushed, I saw the size of the lesion, like a tennis ball. But they do have stuff that could help, either Rads or changing the treatment. The last time, after 6 mos it finally came down a bit, I hope also with the next scan it will be smaller. It worries us terrible, but don't give up, we didn't.
Annie i am so sad to hear what a hard time you are having, you gave me so much support since way back, i, we need you. Maybe someone could give you an answer which direction you could take to feel better, some type of special spa baths?? Love ya
Chelle it's a tough one, a little of what Wendy raves about would not do any harm right? How soon can you get the results? We are cheering for you.
Lynne, oh my, you really got it down to perfection. So happy for you at least you have some real professionals and it seems ppl w a good heart. There half the battle. Keep us posted where you decide to go. It's great you got the surgery so close, so less anxiety and get this nasty out of the way! How is hubby?
Lindalou, you know my daughter had the same type of rads, it's very precise, best of luck.
RuthJ i just read Gilda Radner's story, and to think she was so misdiagnosed, but I hear beautiful things of the Club.
Daughter - just read a book it might interest you, Pretty is what changes, with Jessica Queller, with my girls in mind, i found it fascinating. I am not endorsing her decision for you one way or another, but you will feel very at home. I had to ask for special Interlibrary request to get the book, which came recommended by other authors.
Auroaya welcome home! Unbelievable yo still have to put up w the drains. Keep safe.
Yes yes, I am much better still a little dizzy, I am taking much stronger sleeping pill, so that and a few more days will put me half back. I can never be what I was. I do feel broken. But reading about what you guys go through and looking at Dani, I am embarrassed to even had told you about my downtime, totally out that is what it was with me. three days of non living. Just breathing. Hard to explain.
Linda hope it's turning out better for you.
Deanna how are you coming along?
Cristina hope you have good plans for Christmas.
0 -
wavibg Hi. Lurking. Feeling yucky still. Tried to post earlier but lost it.
Hugs all around
0 -
hugs back patty!
Kristin
0 -
Myra, sorry to hear your news.Prayers and hugs coming your way
Marilyn
0 -
Good morning all,
Annie - you are in my thoughts and I hope that each day brings a bit more strength and well-being.
Chelle - oh how I remember the first follow up scan. I was fit to be tied. Stay busy as much as you can. Wishing you excellent results!
Aurora - good to hear from you and enjoy your friend's visit. Congrats to your daughter!
Lynn - wow how refreshing to meet a doc that has such a good plan.
I have some good news. I found a beautiful, calm 6 year old American Cocker spaniel who was looking for a good home and she found it here! We are getting acquainted, she follows me everywhere. Her name is Praline (like the Belgian chocolate). Will post pics next week.
I know I'm missing and not addressing a lot of you but you are all in my heart.
0 -
LindaE,
Congratulations on your fur baby! Dogs are wonderful, loving and loyal companions. Looking forward to seeing the pics
0 -
Good morning all!
We finally have power again. We're very lucky because we are prepared for times like this, but we were having a conversation with friends last night about what would happen in the cities if there was an earthquake or big power outage. Please keep some food, medications & water available for emergencies.
I'm so far behind in reading so I'm just going to say that I'm thinking about all of you here. Linda, I'm glad that you have a new pup, you have had a really bad couple of months, & this is just what you need. I need to see pictures of Praline. Our friends just got a new cocker spaniel, I will have to see if I can post a pic.
Myra, I hope you feeling a bit stronger, Hi Patty, good to see you. Auroaya, it's good to be at home, get well. Annie, Lindalou, Caryn, Chelle, Marilyn, Kristin, Cristina, Deanna, Jobur, Daughter, Mom, Dune....OMG!! This list is too long & I know I've forgotten some, I'm sorry! I must run, DH & I are running down to Victoria, top down if the sun comes out! I'll try to take a pic.
Take care everybody, love you all for your support, you have no idea. Cheers, Dee
0 -
Linda that's wonderful animals are so great. They make a house a home😊. Looking forward to some pics.
Patty hallo how are you doing? Did they find out why you are having problems with weight and feeling yucky. Hope you feel better soon.
Myra I'm thinking about you and your new treatment plan kicking cancer in the ass. Hard.
Terre I hope you are enjoying your vacation probably a lot of sorting and unpacking going on still eh?
Dune how are you doing? Are you home yet?
Chelle busy busy busy that's the key, and a week and a half before Christmas this should be doable. It will be good to know where you are with the scan though scary. I wonder why we always go to the dark side with these things. We worry about the worst case scenario as if that is how it will be. Don't, you are doing everything you can and your results will reflect that.
Sorry to all I missed but all of you have a place in my heart.
Wendy
0 -
Hi Patty...always good to see you pop in. How are you doing? What is the latest with you?
Dee, Top down, heat blasting is the best.
Linda, SOOO happy that you have a dog. Can't wait to see pictures.
Aurora, Some celebration and happy days ahead for you.
Mama, Good that you have a new sleeping pill. I'm with you on that. Take the time for yourself to feel better.
Annie, Hoping you feel better today.
My radiation nurse called and insurance has approved my rads, so off to treatment I go! She said since this is my 5th time through, they think I deserve some chocolate. I agree! I'm bringing some music along this time to play externally. Helps pass the rad time.
Hugs and best to all for a good week.
0 -
LindaE ~ Love that you've gotten a dog! She sounds adorable, following you around already. Your resilience is inspiring! I'm also looking forward to some pix!
Lindalou ~ So happy to hear your rads are a "go!" Wow, your 5th time. How many zaps will you be getting? I hope you get some immediate pain relief and don't have to feel worse before you feel better, especially during the holidays.
Amy, you've been on my mind and heart, as well as in my prayers, since I read your poignant post about your Dad. I hope you've had some soul-filling time with him.
Chris, glad to see you! How're you doing? You didn't tell us anything about your status these days.
Aurora, glad you're home! And fingers crossed the wound will thoroughly drain this time! Enjoy your time with your friend!
Lynne, I'm so glad your hubby went for a second opinion! I can't seem to find that post now (sorry), but I'm thinking you said he's found a surgeon who can do surgery, which must be a huge relief to you both! So scary when our "rocks" are suddenly not so strong. I'll comment more when I find exactly what you wrote, but I was relieved to hear some positive news on his situation.
Chelle, gorgeous tree, if I haven't already said it! We finally got ours on Saturday night, but it's still bare -- waiting for me to get up some energy. I have been so sick since getting back from LV. I tried to be careful, but as my hubby said, I failed the travel test miserably. I've been doctoring w/an antibiotic my onc had given me in advance of another, longer trip that I'm going to cancel after this experience; plus elderberry elixir and some Boiron Cold Remedy. I should have started my 5th round of Ibrance a day or two ago -- which thankfully has lowered my TMs considerably this past month. But I'm afraid to start it with this cold.
BarbaraA ~ I'm hoping to start Xgeva next month. I've had a long, drawn out issue with needing some back teeth pulled and was finally sent to a UCLA specialist who did an ONJ evaluation, which included a jaw CT, to predict if any teeth could be a future problem vis-a-vis ONJ. Happy to tell you more if you're interested, but I would be very cautious about starting Xgeva if you have any periodontal issues or loose teeth -- anything that could require invasive work later.
MaineRottweilers (Tracy), it looks like your question may have been missed because of Myra's upsetting post. I'm not Her2+ so can't offer any input, but thought I would at least acknowledge your post in the hopes that someone else can comment on Kadcycla. Otherwise, try doing a search of the boards content (to the left) to find a thread w/firsthand Kadcycla experiences. Good luck, and please keep us posted on your situation!
I know I haven't acknowledged everyone, but it's not intentional! Much love to all. Myra, I am especially praying for you today! (((Hugs))) Deanna
0 -
Hi ladies,
Still very rough times here, my DH is now freaking out as he lost a huge deal in real estate, totally not his fault but we are left w no money and I really don't want to be working when I'm in this much pain. I did call pain management and they increased my oxycontin to 50 mg 3 times per day instead of 40 mg bc I told them I'm going through the Subsys spray much too quickly! Let's pray the increased oxy helps me decrease or stay stable on the amount of susbys so I don't go overboard with it.
LindaE- great news that you have a new dog to keep you company! Feel free to post a photo.
Hugs, love and prayers to everyone on this board.
0 -
LindaE, a dog? Awwww, I can't wait to see pictures. It is always nice to come home to a happy dog's face. They are always so accepting and are willing to spend quality time with you. They are never judgmental.
Lindalou, I am glad you will be staring rads soon. I hope you find quick relief from the pain.
Aurora, I am happy that you checked in. I was worried about you. It is so nice that you will have a visit from your friend. Have fun, but don't overdo it.
Jobur, so you had a great start to your retirement, too? I had been healthy my entire career, then retirement came, and BAM! Oh well, not much we can do about it.
Cristina, I am sorry your husband has had a setback in his real estate job. Hopefully, things will turn around soon. I also hope that your revised med schedule eases your pain.
Today's appointment for the 2nd opinion for my husband did not go well. The specialist scared me with some of the information he gave us. Ugh! As it turns out, he does not do the surgery anyway, and we now have an appt with someone else at Lahey tomorrow afternoon. The guy who scared me did arrange tomorrow's appointment right on the spot, so I guess I can't call him a complete jerk. I got the feeling that he was excited to see such a difficult and unusual case and couldn't control himself - not what we needed right now. I know my DH was taken aback, too, so I am trying to stay calm. Unfortunately, he still worries more about me than himself and fears that the stress isn't good for me. Ummm, the stress isn't good for him either! I need him to get through this, and today's "almost jerk" makes me think scary things.
Well, enough downer talk. Once again I have to apologize to all of you. You are my outlet for all this. I can't really let my sons know all this frightening stuff. Thank you all for listening.
Lynne
0 -
Lynne, I'm so sorry about that appointment. Have you tried Goggling and/or calling around to see who is truly the top-notch doc in the country for kidney cancer? I've had multiple friends who were given less than hopeful information, until they found the top doc for their particular situation. In fact, let me ask my sister for you. She's in the NE and in cancer research. Let me see if she can recommend someone for another opinion.
Oh, Cristina, that's a tough situation. I'm so sorry that deal fell through. I'm sure your hubby is devastated. Deanna
0 -
hi everyone, I have not been on this site in a while. Last I posted I decided to try Quadramet. This drug was recommended 2 yrs ago by my RO, but my MO at the time said no, felt side affects were not worth it. Well, I had very little negative side affects, my WBC' s went down to 2.4, but went up within 2 weeks to 2.8, now I sm back to my normal. Prior to treatment I felt like someone was hitting my skull w/ a hammer. The pain was gone within a week. I have bone mets in my hips, spine & skull. My pain level has gone to 0, I am finally off my fentanyl patch, but still trying to ween off oxycodone, that has been the hardest to deal with. Seems silly to take a pain pill when u r not in pain, but the withdrawals make me feel awful. So now I start on aromain & Afinitor. RO says no scans until Jan or Feb. Now I wish I had done it 2 yrs ago. Best wishes to all
0 -
Sue, it's great that your pain is gone. I hope your new treatment plan is just what you need.
Deanna, I have calmed down. My DH called the specialist at Brigham &women's/Dana Farber that we saw last week and had all our concerns answered. Today's dr was over-reaching to conditions that aren't currently issues. The B&W specialist has those issues covered, if needed, and that is the reason for the addl MRI scheduled for Friday. He has all the bases covered. We shall see what tomorrow's dr says, but we still really like the first one. Today proved once did again how responsive he is. DH had no problem getting through to him. He has an excellent reputation.
Lynne
0 -
Lynn - this is a good place to talk about all this and please don't apologize. We care about you and by the same token, we care about your husband too. You'll see what the other specialist will say tomorrow and if required, get a third opinion. You will then be able to make an informed decision. You guys are going through so much at the same time. And perhaps the doc's "enthusiasm" will be beneficial, who knows? Don't let your mind wander too much. Easier said than done.
Cristina - sorry about the missed deal and I hope your new dose will keep your pain at bay.
Deanna - I hope you feel better soon.
Lindalou - how did rads go?
Sue2009 - I was wondering about you lately but happy to hear Quadramet brought you so much relief. That tx is very interesting. Good luck on the A/A combo and please keep us posted.
Patty - you lurker! How are you?
Dune - please check in if you can.
Myra - Feeling any better? You continue to be in my thoughts.
Miss Praline is awesome. She's so cute and funny. A breath of fresh air in the house.
0
