Bone Mets Thread
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Superb advice, Divine!
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To those of you who posted about the anesthesia during the bone biopsy, THANK YOU! I have mine scheduled for 4/17 and have placed myself on the wait list for a sooner appointment. The scheduler did tell me that I need to be there 1.5 hours early and that I would be having anesthesia and needed to have a driver. That's such a relief. It's first thing in the morning, which is also a good thing. Here's hoping the bone mets is just a "Oh, sorry, we were wrong about that!" Wouldn't that be something?
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woodlands — something for you to explore about social security. I've been told a Stage IV metastasic breast cancer diagnosis is an automatic “yes" to a social security disability application. Don't know if that's true or how that works out in dollars for you, but every year you delay going on your earnings regular social security your monthly income increases.
As to the five years — my Radiation Oncologist tells me there's Stage IV and there's Stage IV. I'm not “THE Stage IV."
My metastasis came three years after initial diagnosis—-first in hip (acetabulum) successful radiation now gone—but quickly went to L 2 3 & 4. Getting radiated again — RO calls it “curative radiation“ — and just had first Herceptin treatment. I've had no other treatment except lumpectomy.
After initial diagnosis I spent the first year doing fun things — two cruises and rented an RV. Took my daughter and GrandChuckles on a “Funbox Adventure," as the kids named it. I called it “My Farewell Tour," visiting family and places I wanted the GChuckles to see. Daughter didn't like the Farewell Tour name — I told her just think of Cher; she's been doing a farewell tour for twenty years.
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Great advice Divine!
“Think of Cher” is good advice as long as I don’t try one of her outfits. I could clear out a room with either a cough or a Cher costume these days.
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Woodlands I agree with what Divine said. I have mets to the spine, pelvis and right femoral neck. Every body is different and responds to treatment differently. I don't want to second guess anyone's oncologist but I am surprised that they were so specific. Mine told me that she can't promise I have 10-15 years but also that no one really knows. She followed up to say many of the drugs we are on now (Ibrance, Verzenio, etc) weren't even available 5 years ago and not to give up hope because the research is always ongoing. Find some of the positive threads on here and live with hope. I can't remember where I saw them but I know there are people out there with this disease who have lived well beyond 15 years with it. When I'm down or frustrated I read those positive posts and remember to have hope and take each day as it comes.
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Thank you to everyone who shared positive words about our diagnosis and lifespan. I love the hours that pass when I don't remember my diagnosis. Making masks has been helpful. I need to find a new project that I love.
New subject: I have been tracking my white blood cell count results. What else do you track from.your blood test results?Thanks!
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Woodlands, I love Excel spread sheets. I tracked all of my blood counts during chemo and for a while afterwards. I stopped when I finished treatment. I'll be starting up again with my latest diagnosis.
I've also tracked my blood pressure which had been high starting a couple of years ago. Interestingly, my blood pressure is lower now with this new diagnosis and CONVID-19 thing. Go figure!
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With metastatic disease, you can apply on line for Social Security disability and be fast tracked for approval.
There is a five month waiting period from your diagnosis date and you must have sufficient work credits in the years preceding but you will get the amount every month that you would have received at your full retirement age.
Then, after 2 years you qualify for Medicare. There is a long thread on this topic which I will attempt to find & bump.
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Has anyone had an increase in Inorganic Phosphorus on their blood work? Mine is right at the high limit this month at 4.5.
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Jumping in about Xgeva and SSDI. I always ask the infusion nurse to inject the shot slowly because I had read from others on BCO that too quick an injection can cause nausea. Sure enough, the third time I got it, a substitute nurse injected it quickly before I could stop her and I had nausea for 2-3 hours after. I told the nurses about it the next time, and ever since I've been getting a slow injection and never had any more problems.
I was just approved for SSDI this week. I started the application in mid-February, but there was a bit of a hold-up for SSA to coordinate benefits with a school pension I'll get, otherwise, I Ihought the process went quickly. I received a lump sum for SSDI going back to October 2019 thru March 2020, that I was pleasantly surprised to receive. They determined I was disabled in April 2019 when I was laid off and started benefits 5 months later in October. Then I'll start receiving the monthly payment in May for April (they pay a current month's benefit the following month). My monthly benefit is less than my estimated full SSA retirement from my last statement by about $150, but only because of the school pension and having less than 30 yrs. of "substantial income" subject to SSA tax. It's called the Windfall Elimination Provision - ha! There's a table and formula they use to determine final benefit, but only if you have a secondary pension. Last year's SSA statement assumed my same earnings for the next six years, but after being laid off, having trouble finding work and exhausting unemployment, I decided to retire early with disability, and I'm glad I did!
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Question about Ibrance - Have you noticed that Week One is your most tired week, where you must have a nap in the afternoon? Just wondering if there is any pattern with the medicine. I am on Round 2.
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Woodlands - for me its usually days 13-17, so the second week. Not the whole time, just a day or two in there. Some months I have noticed I have an extra dip on 19 or 20 as well, before I start to 'climb out of the cellar' on the off week. And then some months its not a problem, so who knows.
You may want to try tracking things for a month or two, to see when you get the worst effects. I've found that helps me manage frustration on those days when I wake up and can tell its gonna be a rough one - check the calendar and oh hey! Im in the fatigue window. It also lets me manage how much energy to expend and when, and to warn partner I may have a fatigue meltdown, and then start pushing the water.
I guess instead of tracking PMS I now track fatigue? :P
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Woodlands,
I also have a dip around day 13. It has been consistent since maybe cycle 2 or 3. I, too, sometimes have another dip later in the cycle. One month things hit me around day 14 and I didn't feel great right through about day 20. So I would say that it's somewhat predictable, but also can change cycle to cycle.
I've also seen people write here that they don't feel great on their week off. Maybe it's a psychological effect, but I generally feel pretty good on my week off.
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Woodlands- I have the fatigue too, but mine is anytime in the Ibrance cycle or even the week off. I will be going along doing ok and then BAM. Feels like every cell in my body is tired. Just have to sit/lie down. And then sometimes it feels bad from the get go upon waking-- like Sondra said. And I know I am not going to get much done that day. Track yours and see if you find a pattern.
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If I'm hijacking this thread, let me know and I'll start a new one. My question is do any of you have an Orthopedic Oncologist (OO)? My RO is concerned about my femur. He referred me to the OO and I'll have a video visit with her on Wednesday right after my video visit with my MO. Good grief, that's a lot of "O's"!
My RO wants to do 5 sessions on my spine (L5) and hip. He's concerned about the femur fracturing and wants the OO's opinion on whether I should have a rod placed in my femur. That sounds like a major surgery - I'm not sure I like the idea of that.
His nurse used the word "palliative" when referring to the radiation. That kind of freaked me out, because I associate "palliative" with end-of-life care. However, the RO did say that if he thought I was near the end-of-life phase (that's not how he put it), he wouldn't be recommending treatment - he'd be telling me to go out and live my life. Again, not his words, but I asked him, "So you're not telling me to go to Disneyland?" He laughed. I like this guy. He was very thorough and went through all my scans with me and showed me all the areas of concern. He's most concerned with the weight bearing bones and not so much with the spots on my ribs.
I still can't believe I'm here and writing this. Stage IV? Me? I'm still kind of in shock, but I see that many of you have continued on with a Stage IV diagnosis, and both my MO and RO have assured me that they have patients who have lived long after a Stage IV diagnosis. Treatable, but not curable. I can live with that (pun intended).
The weakness is frustrating, especially in my legs. I squatted down to pick something up yesterday and couldn't get back up. I started laughing, and could hardly get the words out to my husband, "Help me! I squatted and I can't get up!" I did manage to get up on my own by holding onto the door frame.
I'll just keep on keeping on. After I have the video visits with my MO and OO tomorrow, I'm hoping for more answers.
Hoping for a peaceful and pain free day for each of you.
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Woodlands, are you aware that there's a wonderfully active and informative string on Ibrance? Here's a link to it. I'm surely not trying to run you off, but I did want you to know about it if you did not:
Sunshine...
I do not have an "OO", so I have no comment on that. My understanding of the use of the word "palliative" in this context is that it is not curative but rather makes life more pleasant going forward, whether by stopping pain or strengthening a potentially weakened spot, or both. And palliative is surely not the same as hospice....two different concepts entirely.
My early-on orthopedist talked briefly about putting a pin in my hip, and in my case, that was voted down. Instead, I had some "palliative" radiation to strengthen my hip socket areas against potential future breakage. Per my oncologist, adding that pin is a rather major deal with a lot of recovery involved, or at least, it would have been in my case. If necessary, go for it, but I'd make really sure that that was the case, as my orthopedist was incorrect and was resoundingly voted down.
Keep on keeping on, girlfriend...
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Sunshine99- I do see an orthopedic surgeon who is my OO. He is watching my hips to make sure I don’t need surgery to prevent breaks. So far surgery is not required. I had 5 rads to the left and right acetabulum and 10 rads to thoracic spine back in Jan 2020. My treatment plan is Ibrance and Letrozole; monthly blood tests and XGEVA shot; and scans every 3 months. Then a follow up with orthopedic surgeon who also reveals the bone scan
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I am on Round 2 of Ibrance and Letrozole. I feel pretty good except for needing an afternoon nap. My stamina is less when doing my Bollywood dancing at home. I have a very loose bowel movement. I have mets in 6 locations in my bones: skull, ribs, pelvic, spine. I don't feel it, although when I bend down, sometimes I have a horribly sharp pain. It reminds me of the pain we had as girls when are breasts were growing.
What are your symptoms? Will I feel differently as time goes on? It would help me to know.
By the way, I didn't qualify for SS Disability because my teaching job did not pay into Social Security, and to qualify for disability you have to have the last 5 years of work paying into social security. I chose to take early SS at age 62.5 years old. It was a pretty good amount for the years I worked before becoming a teacher.
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Woodlands— I am on Cycle 3 of Ibrance and Letrozole so just a cycle a head of you.
My bone mets were dx’d in Dec 2019 but Ibrance was held while I had 3 weeks a rads to back and hips. Rads did provide palliative relief, which was greatly appreciated. I do have a compressor fracture in lumbar spine that they say is not cancer related so still have “bad” back days. ☹️
As others have mentioned, I get “gas” from I/L and loose stools during first week or so each cycle. Imodium helps with loose stools.
I also have pain in left shoulder that I can get rads for but for now I am hoping Ibrance kicks in to kill off those bone mets
So far, each month’s tumor markers are dropping. Hoping that means Ibrance is working
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Sunshine99 - I see an orthopedic doctor, but not an orthopedic oncologist. Acetabulum fracture is how my bone metastasis was discovered by my hip orthopedic doc.
I had 15 rounds of radiation and then when more mets were discovered in my lumbar spine 15 more rounds. My radiation oncologist has called both rounds of treatment “curative" which surprised me. I thought after a stage IV diagnosis everything is palliative.
The acetabulum treatment seems to have been a total success—no evidence of residual cancer and my fractures have healed completely without surgery.
j
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Sunshine, I cannot answer your question about the OO, but I see you were diagnosed with mets about a month ago, and I wanted to offer you encouragement. You're just new to this!! It is a lot to wrap your head around at first, and in time, you'll find you adjust. I wouldn't like the word “palliative" either, not before you've given this diagnosis a run for its money. I don't think some doctors understand. I'm over 9 years out from my stage iv diagnosis, and you could have a great run like this and longer. They have no way of knowing. That said, when I do need palliative care, I won't hesitate to get it and I'll take advantage of all they offer. Best wishes to you!
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Sunshine - I could swear someone on here got the femur rod - emac perhaps? That or a hip breaking is not something you want to deal with. I hate that word palliative too, like its some sort of consolation prize care. However, considering what some of the palliative specialist docs do, maybe in another life that would have been an interesting career choice.
ByHisGrace- are you on XGEVA or another bone strengthener too? Thats a lot of rads!
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Hi my name is Yvette i have been diagnosed with Malastic Breast Cancer Stage 4 was suppose to have surgury this past march but was cancled due to the cancer spreading more the bones.Enough about me girl i feel you if i lay some where for a period of time i have to have my son pull me up or squat to pick up something i am stuck.My chemo was stoped in Feb cause my dr wanted to try chemo at home in pill form and some other pill to stop my body making estrogen to try and starve the turmors. I was taking pain medications but nothing wasnt working for me and i didnt know how to tell my pain dr . Was taking suboxen cause i was in recovery had to stop taking suboxen when i got diagnosed but went and got back on it .So i am wondering if it to will help with this pain? Sorry for typeing so much
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Welcome, Yvette. We're so sorry you find yourself here, but we hope you find this to be a supportive and welcoming place. We're so sorry for what you're going through! This is the best place to ask for advice, and hopefully some of our knowledgeable mets members can offer some advice and guidance on how to manage your pain. We're all here for you!
The Mods
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Yvette, I'm so sorry that you're going through this and that everything has been made harder by the Coronovirus situation. If there is a language barrier, is there a community resource who could help you explain to the doctor that the pain medication you're on is not working? Or perhaps even the mother of one of your children's friends (I read your posts on other strings) could go with you to talk to the doctor about your concerns. You certainly don't want to jeopardize your recovery by taking the wrong thing, but you also need relief. Good luck, Yvette!
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SondraF - Thank you for asking. I’m not on a bone strengthener.
Before mets diagnosis I declined bone strengthening meds because I have lots of dental issues (all enamel was cracked in a car crash when I was a teenager.) I was more afraid of ONJ and jaw crumbling side effects.
I was osteopenia — heredity and malabsorption from several intestinal surgeries contributed. I tried to ward off deterioration by working out two hours, six days a week for years (weight training and impact cardio) and taking Vitamin D2 and D3 supplements.
Now dx full osteoporosis. Would start bone strengthener but now waiting for dentist office to reopen. Current dental work must be completedbefore starting.
I’m new to the radiation world. Could you share please why you think 30 total treatments is a lot. How many would you have expected for an index card sized met in my acetabulum and three months later mets in L -1, 2, and 3? Thanks.
j
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I've been out for a bit and am just catching up on this thread. I guess I'll just add a few thoughts. I did have a rod placed in my right femur and femoral neck. I'm not sure they would have proceeded with that if the mets were in the femur only. I don't have an OO. I'm in a smaller town and so my orthopedic surgeon worked with my MO but he did not specialize in oncology and when they discovered the met in my femoral neck it was so large that everything got fast tracked because I was a major fracture risk. Not going to lie, the surgery is no walk in the park. My surgery was in December and I am just now feeling like I can walk and hike without a cane or crutch. My mobility issues now are more flexibility issues and I'm working on that. Also know the rod is not a fix all. I was warned there is some risk that my femoral neck will fracture around the rod and I may end up with a hip replacement anyway. It was explained that the rod was just less invasive (Ha!) and carried less risk of infection than the total hip replacement.
I think the first time I saw the word "palliative" on any of my paperwork I was finishing radiation. I was a little bit gutted by it. It' s not unusual to associate it with hospice care. Really though, it just means treatment to bring comfort instead of a cure. This may be a wrong association but the way I look at it, it's really no different than being on medication for arthritis or any number of chronic diseases. It's not fixing the problem, it's just making the problem easier to live with. I had to really break that palliative/hospice association in my head because while they often go together, they are also independent of one another. Sure, stage IV isn't curable right now. I still have no problem with therapies or treatments that make my life better and had to think of it that way instead of thinking of it as me being "end of life" because that' s just not the case.
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Emac and all my other ladies, thank you for your responses. I just finished my video meeting with my MO and will meet with my OO in about an hour. My MO is going to start me back on Armindex and then Ibrance once I finish radiation. I will physically see her (the MO) in 3 weeks and will start Zometa infusions. I think she said every 4 weeks.
I will see what the OO says about the femur. It didn't look as bad as the other spots on the scans, so we'll see what she has to say. It's very reassuring to look at the dates some of you were diagnosed with mets and to see that you're still here and posting.
Here's to keeping on keeping on! (Did that make sense?)
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emac, what a great definition of palliative" you give: treatment to bring comfort instead of a cure. I like that so much.
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I have a treatment plan: radiation, Ibrance with Arimidex, and Zometa.
Feeling better about having a plan in place. Ortho onc ordered an MRI of the pelvis and an X-ray of the femur. Both will happen tomorrow and then will video visit with her on Monday. Spine biopsy came back with same receptors as lymph node biopsy: ER+, PR- and HER2-. Yay for no Herceptin.
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