Bone Mets Thread
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for a big group (if they're in the same suite) I like bringing in a bunch of bagels, cream cheese, fruit and coffee, juice, etc...Panera or someplace similar can package it all up very nicely and deliver it or I can carry it in
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Pwilmarth, thanks for the info about protocol for Herceptin before 2013. My dx was in 6/2015, ended H 7/2016. MO's PA told me women who are not hormone+ continue with it, however, I've seen some who are Stage IV TripleP who are still on it, so I've wondered more about it. I'm currently on Zometa and Letrozole.
As far as Zometa, I agree about hydration and haven't had any SEs, not even the flu-like symptoms. I also read on BCO that slower infusions are best and to request at least 30 minutes, which I do, too.
Lynnwood, wonderful news! With hugs to all.
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Hi!
Jen, Barb, Linda, Z, Jennifer, Pwilmarth and Lulu - Shows where my head has been...I hadn't even thought of gifts for my medical providers. Since I've changed doctors and don't do infusions I don't feel close to my providers.
Mom ATT - I don't know about melanoma treatment yet. We will see what the surgery shows. I went back through the pathology report and it looks worse than I originally thought, (at least .9 mm deep) but it still doesn't make sense to me to remove lymph nodes when they wouldn't do that for stage four BC. Staying intact has a lot of appeal! I have been looking a protocols that may work for both types of cancer so I know what they are talking about when we have the conversation. Upcoming Pet scan December 29 so that will show what else is (or hopefully is not) happening. Coordinating with multiple doctors in different towns is a full time job. You have my respect for being able to do this for you and Dani. Hope you are all able to enjoy the holidays.
Great news Lynnwood! Love to hear about good scans.
Yes...Femara makes me cold and the Ibrance makes it more intense for me. (Gracie I may havel already answered this, but just had a chill :-)
Dee - Shoveling two driveways will definitely make your temperature rise! Glad you are feeling well and getting outside!
Babs - Hope your SEs are mild and you are feeling decent today!
Have a good day everyone!
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Kathryn yep it's def a full time job. We were requesting some slides, and we thought it's being taken care of, meanwhile we found out that there was an authorization missing, you would think they will call you to let you know, but it's not the way it works, so we are 4 weeks behind, i called the original place that had it and they have been working on it asap. Re: the Pet/CT you could not get an appointment earlier? Dani is also having Pet/CT around that time, I'd postpone it but Onco says she prefers to know things sooner than later...I just saw a youtube about Pet/Ct ( I was trying to get some info for s/o else that has prostate cancer), anyhow, they showed how they were able to see a miniscule melanoma in the Pet/CT. I don't know if you like to read up on this stuff, but that book I mentioned to you, it's great. Maybe will give you something to think about. Of course I have no idea, if imunotherapy could be for you, maybe you will like it anyway.
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as a newly diagnosed bone met stage 14 (6 weeks) I am finding it hard to adjust to tiredness Odin and the big change in my physical ability to perform normal tasks. Finished 2 bouts of radiation 2 weeks ago to spine and started Taking Letrozole. Will I get less pain free and be able to walk more than a Km?? Atm I sit home after having a full time job I can barely walk 1km after running 5km regularly and I feel pain I my ribs must of the time (even on strong pain meds every 4 hous) and aches in my spine. I also have 3 collapsed vertebrae which I think will repair. My oncologist led me to believe that I could go back to running and working part or full time in a few weeks which I find very hard to imagine. Can any of you girls with bone mets (mine were extensive on spine ribs pelvis and some in back of skull) when you started to feel better from date if diagnosis. I am hoping this is not as good as it gets. I start a trial of a new drug in January hopefully in Melbourne so that might be a different outcome as well. Thanks girls Judy Bendigo Aus
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delvzy- it will get better but you have to keep moving. Join us on the stage iv fitness thread for some motivation from a bunch of women going through the same adjustments.
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delvzy - hard to put a time frame on your question. Post rads pain can get worse for a good 2 to 4 weeks before it gets better. Are you on or will you be on a bone strengthener such as Zometa? That will also help with bone pain. You may want to ask your MO for extended release pain meds.
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Hi Delvzy. I was dx 4 months ago with spine & rib mets. I also have arthritis. I had radiotherapy to one area and it seemed to help after about a week then came back but not so bad. Now really just one rib which gives nerve pain. I am on 3rd cycle Ibrance & Letrozole plus Denosumab. I am not having too many s/e from drugs except I have a few days of worse arthritic pain after Denosumab. Good luck. Chico x
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Delvzy,
Everyone is different....it was 4 months for me before I even started to feel anywhere near normal. When I was dx 'd I had 'innumerable' lesions to spine, ribs, skull, shoulders, sacrum, pelvis and femoral heads, and suffered 13 pathological rib breaks and 4 spinal compression fractures in the first 6 weeks. My skeleton looks like Swiss cheese on the bone scans. All I could do was lie in bed, and be transported for treatment. I went back to work, after four months, half time, and over nine months worked back up to full time at a desk job. I was determined to kick cancer's ass!
I recently left my job on full disability as I now have mets to my liver, lungs, and lymph nodes in my chest. Shortness of breath is my biggest impediment. Maybe more than what you wanted to read, and I am over four years living with this, with a fairly decent lifestyle.
Do what you can, when you can, and forgive your body when it can't do what you want.
And hang in there.
Love,
Patti
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oh, regarding gifts to our healthcare providers:
If you must, and I guarantee no one is expecting anything, take something everyone can enjoy...chocolates, cookies....the good stuff
They just want us to get better.
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MomATT - Arghh on the slide snafu...and can you share the name of that book again? I started backtracking and didn't get to it.
Thanks so much!!
Delvzy - It did get better after a while. The bone healing causes pain, but once they are healed, it is better. Now I feel the lack of cushion between the bones due to estrogen depletion. So, it's more like arthritis pain now, which feels somewhat normal. I can whine to friends about arthritis without scaring the bejeezus out of them :-)
I found the fear in the beginning created lots of worry and pain awareness. That got better with medication.
Hang in there ladies!!!
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Taking a break from decorating the tree. Have to pace myself because of bone Mets pain.
Delvzy, it took about 3 mos for me...everyone is different. I still get fatigued from xeloda and sometimes short of breath. Also on full disability as I have liver, pancreas, kidney and abdominal wall Mets, five compression fractures to spine, three in ribs, etc. I'm 8 mos out, and still getting used to this. We do what we can. Listen to your body.
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Hi Delvzy,
I was diagnosed just about the same time you were. I have bone mets to my spine, shoulders, skull and pelvis. I had been in pain and have a very physical job and just thought I kept hurting myself. Pulling muscles etc. My husband is a radiologist and started with X-rays which lead to this scary diagnosis. He immediately took me to the MO and within two weeks I started Faslodex and Ibrance. He thought I would need radiation but the MO was sure that within 3 treatments my pain would go away. And it did. I'm almost completely back to normal. I went to another hospital in Boston called Dana Farber for a second opinion and to have another MO on board and he agreed with the treatments. My big problem now is that my liver enzymes that have to do with the bone have come down to normal but my ALt and AST keep going up. I was having a crying session tonight because I'm so scared of this disease and wondered if anyone else has had this issue. My MO thinks it's the Faslodex causing some liver enzymes to rise and not others. Had a clean PET scan in September only bone mets. If anyone has had this please let me know and for you Delvzy I think your pain will go away when you get the proper hormone therapy and a bone strengthening shot. I get Xgeva. I had radiation the first time I was diagnosed and it took a little time to recover from the burning and drain on your entire body. I hope you find relief soon. I just had to go today and get meds for my mind. I'm really going a little crazy and falling deep into a depression.
Thinking of you and all the wonderful ladies who are so strong and helpful. Thank you all.
Anita
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Anita - Thinking of you tonight. We're on such thin ice all the time. It takes so little to freak out and have a melt down. You're so close to the original diagnosis that its all pretty raw. ((HUGS)) When it's time, make some plans to something simple for yourself that you love to do.
That said, you had awesome scans in September. This is a little bump in the road. You will figure it out. The liver mets ladies may have advice on how to baby your liver. One of my tricks is Sylimarin. It is an extract of Milk Thistle that has been shown to be protective of the liver. I take 300mg per day.
>Z<
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Thank You <Z>, it was a bad night of meltdowns. I guess time will help. Thanks for the advice, you are always so helpful!!! I really appreciate it. Need to find out what to do about this liver enzyme increase, hope I can stay on the medication. I think I will go to Dana Farber in January and see what they have to say. Second opinions are always great!! Thanks you again. Hugs to you too!!
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Hi folks,
Okay...the surgery drugs are still working. I just posted on the brain mets thread instead of here😜
Clean margins on the melanoma excision and no recommendation for further tests or treatments...thank goodness! I did asked them to test it for BC cells just in case
Thank you again ladies for talking me off the ledge!
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Iwrite, that's great news!!! I'm so happy for you.
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great news Kathryn!!
((hugs)) Anita, I don't have any advice, but we're all here for you.
Hi to everyone else! cheers, dee
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Great new Kathryn!! One less thing to worry about and clean margins are great. Now you can rest easy!!
Thank you Dee, I know all of you ladies have these days and worries. I am hoping I can rally and you all have been here with love and support for all of us in this boat. Thank you again Dee.
Anita
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Great news Kathryn! A good reminder for all of us too!
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Glad it went well Kathryn
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Thanks girls I have changed to a stronger slow release pain killer and cut back on the short release one and can't believe the difference. In 2 days I am back driving everywhere back st work starting Friday mornings and doing light weights and walking. What a difference . Because I am a very keen exerciser I am keen to know if anyone else runs with spine bone mets. Thanks again from this Aussie girl for your input
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Kathryn that's great news now you can enjoy your Christmas🤗 And relax a bit.
Warm hello to everyone else
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photogirl yes I am
Like you I was diagnosed in 2008 and thought my aches and pains were an inflammatory disease called costocondritus. My GP gave me a bone scan in Aust you only have 1 when diagnosed then only if you have symptoms again and he said they would find nothing. Well 6 weeks ago it's in my spine pelvis ribs . The radiation knocked me about and I have changed pain meds so looking at walking more ( I have 4 collapsed vertebrae in my lower spine which are slowly healing. I would like to get back to running one day soon . I have really tried to only focus on positive things and not to be around friends who speak negative words over my health . Back to work part time Friday
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Delvzy, I know the feeling. I'm trying to stay away from people who feel sorry for me and work on being normal. I went back to work as well, I have a physical job in greenhouses so I do what I can and then take a break and rest. I think the biggest problem is my stress level. I really feel fine and I think you will too once you get on the right treatment. Take care and lots of hugs to you!
Anita
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Kathryn - Excellent news!
Anita - I hope you feel better soon. Sending BIG hugs your way.
Delvzy - good to hear your pain is better. Makes all the difference. Sometimes I think extended release pain meds were invented for me lol.
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Thank you Linda. I'm hoping that I can get over the hump soon. Today seemed to be a better day. I guess with this dx, its day to day with lots of ups and downs. Thank you again!!
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Good news for you, and I wish I could say the same, but I also have degenerative arthritis along with 4 bulging discs, and 5 compression fractures, so pain is always there and mobility is limited with my back. MO says absolutely no PT, just walking. I can try acupuncture when I go off the chemo. I basically use heat and massage and medical cannabis for pain.
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Hi All,
Reporting after a while again. My wife's last set of scan results (CT and Bone) taken in October showed signs of stable / healing disease. Her blood work is normal too (CBC + Metabolic panel) including liver functions and Alkaline Phosphate (which by the way is steadily falling ad well within normal range now).
However, at the same time her CA 27.29 has been creeping up slowly. It went from 151 in September to 165 in October to 175 in November and 200 in December. When she was diagnosed back in late February, the number was 995 and then gradually declining until the recent rise. She has no pain anywhere (was in severe pain when diagnosed) for a long time now and no issues overall (feeling fine).
Her Onc @ Stanford discounted the 27.29 numbers telling since every other result and physical symptoms are fine, and said we should not worry about it.
Can you please suggest what you think ?
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I agree with her onc. Mine has essentially stopped using a TM. Her words were " we can't make decisions on just TMs". There are many on here who have remarked about rising TMs with good scans a less pain. Hope you can relax and enjoy the good news you received!!
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