Bone Mets Thread
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Terre, Congratulations on remaining stable for 31/2 years. Woohoo! I hope you enjoy many more years of stability. Directing a kitten photo shoot sounds both challenging and fun.
Carol, Haha. I knew what you meant, and I was flattered. Well, at least I hoped you didn't mean that I looked like I was born in the 30s. Lol. There are days that I feel like I was! I was born in 1950, so I was a girl in the 50s. I am now 66. I plan to live for decades longer, so I will remain a 50sgirl forever and won't have to update my name here.
Dee, You will be in my thoughts on Tuesday and also in my prayers. In fact, you will be in my thoughts and prayers during this period of time leading up to your appointment, too. I know this is a stressful time for you. Close your eyes, take a deep breath and remember that you are a wise, strong woman. I have no doubt that you will ask all the questions that you need to have answered, and you will make the decision that is best for you. We are all here supporting you,and our love and support will help you through this time.
LindaE, I feel great after my kidney procedure. I had a stent in place for a week following the surgery, but that was removed on Friday. An x-ray shows no sign of remains from the stone, so all is good. I do have to go for a MAG3 scan next month to check to see if a pinched ureter is causing problems because I have hydronephosis (fluid accumulates in kidney), but I expect good results. My urologist is just super-cautious because she wants to make sure my only kidney is functioning well.
Lindalou, Thanks for posting the pictures. You look great. I am glad you are able to kayak and get back to something you enjoy so much. I have only kayaked a few times. My first time was in Hawaii in a tandem kayak. I was in the front, and my husband was in the back. We were with a group of people led by our guide. I glanced back after about 20 minutes and found my DH just sitting there with his paddle across his lap. It might have been a kayak for two, but only one of us was paddling. I told him I was going to throw him into the ocean and let him swim to shore. We had a good laugh, and he did paddle after that.
Caryn, I read on another thread that your school year has ended. Enjoy your well deserved vacation. I know that teaching can be challenging. How are your grandchildren? It's time for new pictures.
Enjoy your weekend, everyone. We are having a cool rain here today. I hope you are having better weather where you are. Thank you all for being so wonderful.
Lynne
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Linda I have kayaked and loved it. Your pictures are great and you look like you were having a good time.
50sgirl, great new avatar.
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Dee- Sending calming thoughts your way! Wendy- Hope it's been a wonderful birthday!
Linda- Kayaking looks really fun! Being on the water is the best.
Enjoy the rest of the weekend ladies
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Thanks for asking about my annual visit at MDA. We got home late Thursday, after being delayed by a major accident on the highway; I said a silent prayer when we saw the burned out vehicle while detouring thru a weight station. Went to work on Friday and I did not want to think about the questions I have to consider.
I have an atypical case, and this is my third year visit to MD Anderson. It is still "no corresponding abnormal activity can be seen on bone scan", although the patient has widespread sclerotic lesions on CT scan, which are highly suspicious for bone metastases. Actually, CT raised the possibility of metastases to bone on my very first exam in 9/2010 before the start of any treatment; and consistently raised the same question in every report thereafter. Despite my TM continues to rise at a slow pace, the bone metastases question was all negated by subsequent bone scans or PET scans, and even by the two biopsies in 8/13 and 4/14. Until MDA re-tested the biopsy specimens with a different stain in 2014, it showed I did have cancer in bone marrow, probably from the very beginning in 2010.
In the past two visits to MDA, despite the slow pace rising of TM and conspicuous more cancers showing on CT, I was told "stable" and continued on Faslodex and Xgeva, because "we treat symptoms not X Ray". This time I was told "bone mets appear "slightly more conspicuous compared to last year", so I did not get the "stable" verdict; and instead was asked to consider the next treatment. MDA Onc recommended (1) Ibrance + Femara, but because I don't fit into the Ibrance criteria, the insurance may not approve it as an off label use, (2) Afinitor and Aromasin combination, or (3) for the most conservative, and the best quality of life, stay on Faslodex and Xgeva. I have already scheduled my F & X shots for next 4 months and an appointment with local Onc in October, I really don't have to make any decision now. I know it will hunt me for the next few months until I make a decision. I have read all of the Ibrance related threads from 2014, so I understand the SEs. Could someone enlighten me on the SEs of AA. I heard it is terrible, and have not seen an active thread for a while.
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Hi everyone. Sorry to jump in, but I am wondering if anyone has personal experience with hypercalcemia because of their bone mets? My mother was told her calcium levels are high and taken off Faslodex and will begin chemo again next week. That's really all we know so far. Her scans still appear stable but I guess the increased calcium in the blood means otherwise. Any insight is appreciated. TIA
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Lindalou- Awesome pics and you look great! Thanks for sharing such a great accomplishment!! Do you think the Qui has helped?
Lynn- I am where you are today as we are back visiting North Shore since last week. We need some warm sun, my bones creek as I walk this afternoon!
Kathryn- Was thinking about you yesterday and wondering how next round was going. I'm on week off. I see a new MO in 2 weeks. My MO is on maternity leave. I guess they have to take time off!! I love my MO so I feel insecure.
Terre- hoping you share some of your photo shoot.
Caryn- I bet you're happy to have your summer vacation start and get more grandchildren time! We just had a dance recital today for 3 of my ballerinas. They grow up so fast I cried tears of joy watching.
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Tia, is your mother on a biphosphonate?
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Yes, she is on Zometa. She used to get it monthly and then switched to every 3 months and eventually it was to be every 6 months. They gave it to her right away yesterday after discovering her elevated calcium.
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Cling- the good news is your mets are really really slow moving!! Are your scans done at MDA? Do they only do bone and ct? Or pet too? Did they mention on doing another biopsy to see if any status has changed.
I am doing Ibrance/letrzole- i know you have researched and I am honest by saying -I do not think its a walk in the park and honestly I am grateful that I have been stable for a few months but certainly remember letrozole by itself back in the day much easier than now. Glad you have time to
think about it. Thanks for sharing the information with us. MDA takes such a conservative approach, you are so lucky you are within driving distance.
There isn't a better place to go then MDA.
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Carol: Thanks for your honest experience on Ibrance\Femara. That's also my local Onc's recommendation in April IF the progression is obvious. I had CT and bone scan at MDA as well as locally, all the results are similar; bone scans showed normal, and CTs showed slightly more conspicuous than the previous year. PET scan is no longer permitted by my insurance, and not reliable for me anyway. Other than fatigue, I almost have no symptom, no pain on current treatment. So, I am leaning towards the quality of life.
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Linda that's a great picture, isn't it great being on the water.
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Oh, Linda, what a dream come true! I'm so thrilled to see you out and doing something you weren't able to do for so long! It makes me teary eyed too!
I am re-sending another revised contact list out tonight. If I had your email address, I've emailed it to you to retain the formatting that makes it easier to read. If I don't have your email address, look for it in your PMs. No need to thank me again, but please let me know if you gave me your info' and didn't get a copy in one inbox or another! Thanks.
Cling, I haven't been on AA, but I'm wondering if your MDAnderson onc considered simply adding Ibrance to your current regimen, as it doesn't sound like Faslodex has failed you. Just a thought...
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For those of us with no lytic lesions, the sclerotic (osteoblastic as opposed to osteoclastic) mets are not healing. Specifically with degenerative spine disease, sclerotic mets can decrease mobility.
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Lindalou, lovely pics! and proud of you! And you look great.
Golden - I answered your pm a few minutes ago. I had not read your post here before answering, but seeing that she was on a 6 months schedule is reassuring to me. She will probably be very closely monitored and switched to another schedule. I'm thinking it can also ease her back pain if that's the case.
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Cling,
I did AA. Aromasin was easy, but I got a lot of mouth sores and bloated stomach on Affinitor. Neither worked so I tried Faslodex before going onto chemo again. I'm off chemo again because it was much too harsh on my body.
Terri
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Terri: Thanks for your info. I did Aromasin for over two years, it was easy, but could not stop the slow rising TM, so I was switched to Faslodex. How long were you on AA? Did you change treatment because SEs?
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Cling,
Hope you don't mind if I jump in here regarding the SEs of A/A, since everyone has difference experiences. I just had to switch to Ibrance because the A/A failed in almost exactly one year. I was on the 5 mg dosage, but my MO was afraid to increase it because he didn't think I could tolerate SEs at that higher level. For about the first five months, the side effects were really bad, especially the mouth sores, but I finally got excellent relief from the sores using Mugard mouth wash, which was available from a specialty pharmacy. I also had pretty bad diarrhea for the same amount of time, but it was controlled with over-the-counter Imodium. During the seventh month, all SEs completely disappeared and I've felt incredibly well since then - resumed all of my activities including walking, mowing grass, etc. During my last visit to review PET/CT results, my DH told my MO, "If it weren't for your lousy scan results, Angela would be just fine"!
Angela
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Hi all! Nothing much to add as I can't answer any of the questions posed, but thought I'd share a snapshot from the calendar photo shoot to brighten everyone's day. Please be sure to notice the cute kitten!
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Lisa: I got your PM, thank you!
Angela: Thanks for giving me your experience on AA. From the SEs you described, I think neither Ibrance + Femara nor AA will be an easy task like Faslodex + Xgeva I have now. If my scans show obvious progressions, I won't hesitate to change treatment, even though I look and feel fine. But with no definite "progressions", just slow climbing TM, I may not want to change treatment now.
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I can't keep up with all of you.....
LindaLou - great pictures! Congratulations on being able to kayak again.... I totally understand the tears!
Terre - so happy for your 3.5 years of stability and those low tumor markers! That is wonderful. You seem to have so much energy....thanks for sharing your pictures too.
And Dee- add me to the list of those thinking of you on Tuesday! The waiting (from now until Tuesday) is the worst part.
Hi to everyone else!
XO
Andi
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Hi everyone,
I've been one of the missing, so here I am with an update.
Scans (last 2) have shown that I'm dating the Stable Boy, so that is good. Next scan in a few weeks. I've had a LOT of headaches and, of course, am afraid that it's gone to my brain.
However, I've had a terrible spring/summer and I don't know what to make of it. First I got a UTI. After 3 months, 3 antibiotics, and lots of missed work, I had about 4 days of feeling decent before BAM I got hit with some kind of virus with high temps, chills/sweats/etc. Can't take Advil because of the Coumadin I take and Tylenol is like taking a sugar pill for me, so I just had to tough it out. Missed a week of work. Went back for about a week and got hit with another virus. Kept me out all of last week.
I applied for disability through the state (( work a government job so it's not SSI) and I think I'm going to get it but dear god, how am I supposed to be able to live on 1/3 of my salary?
It's an emotionally charged time. I guesstimate that another month should see me out of work. Which would be good because they have changed from being supportive to writing memos to HR and making my life hell. Thank goodness for FMLA.
I go back to work tomorrow and am not looking forward to seeing what way they're going to try to screw me over now. WHY don't they understand that I did NOT give myself cancer, CANNOT control how badly I recuperate from an illness that might just barely touch a regular person, and am NOT doing this on purpose???
Frustrating days, indeed. This, too, shall pass.
JJ
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Jean, did you go to a doctor with the latest infections? Did you have respiratory symptoms or just the fever and chills? The last time I had a high fever it was cellulitis, and they often put people on IV antibiotics for that.
(I hate auto-correct!)
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Good to hear from you, Jean, although I'm sorry you've been having such a rough time with multiple infections, then the added stress put on you because of having to miss work. On the other hand, you're stable!!!!! YAY!!!! That's great news!
I hope things smooth out for you. And shame on your workplace for making things so difficult and unpleasant for you.
Terre, awwww, what a cute photo!
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Awwww, Jean. So sorry you're going through the wringer. Sending hugs and hoping you're still dating stable boy.
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Hello to all
I am overwhelmed with sadness about the terrible loss of life in Florida. My thoughts are with the victims and their families. My goal is not to live in fear as I won't be terrorized.
Peace to all here
Mary
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Mary,
The acts of violence and terrorism that seem to happen so often are frightening and incomprehensible. I will never understand the thoughts that are going through the minds of the perpetrators. I cannot even imagine the horror experienced by the victims and the shock and sadness felt by their friends and families. I pray for all those touched by the recent tragedy in Florida. Your goal is admirable, and I stand by your side to share that goal.
Lynne
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Hello everybody, It has been a long time since I last posted. I read every day. I pray every day. And think of all of you so very often. I am finished with the big move. Sold the house and closed a month ago. I now have five of us living in a two bedroom apartment. For some odd reaso, we are all very happy and cozy here. My fourteen year old daughter has a Harry Potter closet for a room. My Mom has the dining room for a bedroom. We made a wall out of Rubbermaid containers. My husband and I share a good sized master and bath. My 96 year old Grandpa has a nice room to himself as well. We are doing fine here, totally crazy, I know. Makes me wonder why I'm building a big house. But by the end of this ten months, I'm sure we will all enjoy our own space.
My cancer gets very little of my time and thoughts. I'm really trying to cruise down denial as much as possible. I do have my meltdowns, but they are fewer and further between. However, I find myself in the hell of scanxiety, as I have a pet scan tomorrow morning. I see MO on Wednesday. I will have the results as well as a zometa infusion. I will most certainly post on Wednesday. I ordered radical remission and it will arrive tomorrow. I wish I had it now!!!!
I'm terrible at addressing everyone personally. Please know I pray for us all. I love you ladies!!
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Chelle - I love how close you are with your family. Certainly a time to treasure each moment. The time will fly by.
Good luck with your scans, don't worry ! I almost gave you a call last week!!
I'm sending you prayers and love as always.
Carol
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Chelle, It is great to hear from you again. I was thinking of you yesterday and wondering how you were doing. I am glad that things are moving along. Did you put things in storage or have a big purge before moving into the apartment? I think it will be a great experience to live together in close quarters for ten months. You all know that is just temporary, and that will help get you through it. You will all appreciate the big house once you move into it. I did chuckle at the thought of your daughter in the Harry Potter closet. It sounds like you are handling your cancer quite well. That cruise down DeNile works for me. I will be thinking of you tomorrow and and Wednesday and sending you good vibes. I look forward to seeing your post with good results on Wednesday. You remain in my prayers.
Dee, I am still thinking about you. Good luck tomorrow.
Lynne
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Caught up on all of your posts - not too much to offer other than a belated Happy Birthday Wendy and thinking of you all and good luck tomorrow Dee!! Hoping you are all having good weeks!
My mom and I had a nice time last Friday after bringing her to all of her appointments then home to my house for a home cooked meal before bringing her home (~hour away). The city is definitely scary for her and my GPS decided to take us through some of the rough areas of Boston - oops but she survived.
She'll know this week whether she can start on her trial and and also has her liver biopsy this week. I showed her some of your nice posts and will help her set up a screenname - for now she has just been lurking.
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