Bone Mets Thread
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Welcome Bonnie...so sad you've now joined this prestigious club....one that no one ever wants to join. We're here to help, love and support you.
Do you have a medical oncologist (MO) yet? Once they get a handle on a treatment plan, things will, hopefully, be a little smoother. The first couple of months you are just NUMB and SHOCKED. Do you have a lot of pain? I had horrible pain in my spine, and that's how I was originally diagnosed.
On the bright side, cancer research has grown by leaps and bounds and there are so many treatments out there to help you. Stage IV is NOT the death sentence it once was. There's another topic thread on this board on St IV not being a death sentence, and you'll find it uplifting to hear stories from other women who are dealing with St IV, too.
In terms of the profile section, you have to click the little icon to the right and decide whether you want that info to be public (shown below your posts) or private.
Take care, and remember we're all in this together (whether we like it or not...)
Lita
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BonnieMen - Welcome. The first few months there is a lot to learn and one doctor visit after another. The emotions are crazy and there is family to deal with. Carve out some time for one very gentle, healing thing for yourself every day --- prayer, yoga, a massage, walk.
>Z<
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I moved to a new state in June of last year and hadn't plugged in with a new MO yet. I hurt my back last summer and the pain sort of came and went. I didn't have any insurance so I ignored it, thinking I needed to loose weight and exercise (story of my life). By November, it started to hurt pretty bad so I went to a walk in clinic. They did an X-ray and told me (knowing I was concerned about the cancer) that my bones looked good - a little arthritis and a little scoliosis but it was a soft tissue injury and I needed physical therapy.
The beginning of 2016, I got insurance and by March, I was meeting my new MO. I told him I had somehow hurt my back - not sure what happened - but was told that it was a soft tissue injury. We did bone density scans ( good) liver sono inspired by my bloodwork ( I'm overweight so the fatty liver is expected, lets do a CT scan) and mammo on my non-boobs (good). My back hurts but I'm busy getting PT for the scar tissue that has formed around my tissue expanders. You know, diet and exercise...
Come June - something happens and I've got nerve pain in my back and I can barely walk. I'm leaving for vacation in a week so when I get back, I'm going to an orthopedic doctor. The first Dr. sends me for an MRI, says it could be compression fractures. Yep - so he refers me to a rheumatologist and to the orthopedic surgeon to see if putting some plaster in there can help stabilize things and relieve the pain.
In July, I'm seeing the surgeon, who orders an MRI with contrast to get a better idea of what is going on. Wow. I got a copy of the images (taken 8/6) and while really cool to look at, it showed two vertebra had crumbled and a piece of bone was pressing on the nerve, explaining the severe pain. There were two other vertebra that were a funny color. The report said the images looked consistent with met disease. Surgery is scheduled for the end of August - we did rods and pins, plaster, and a biopsy. I see my MO in August, tell him about the upcoming surgery. He schedules an abdominal CT and PET the week before my surgery.
So, all that to say 14 months after I "hurt my back", I am told I am having a reoccurrence. I figure that stuff has been cooking in there a while. Although he had the MRI report during my visit early August, my MO didn't tell me until after my surgery at my scheduled next appt. I knew because of the report. The surgeon confirmed only when I asked about the biopsy at my post op visit.
To be cont.....
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Bonnie Men-welcome but so sorry you're here. You'll find this group unbelievably helpful, caring and supportive. Are you on any treatment plan yet?
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Hi Bonnie,
Yours is a very similar story to mine, which was found exactly a year before you detected your recurrence. I am also ER+/PR-/HER2- and am responding fine to Letrozole/Ibrance at the one year anniversary. To get by, I've decided that modern medicine is probably the only reason I am still alive today anyway, so it can dang well keep me alive for the rest of my normal lifespan. Assuming this will be the case, I make sure to do the scans and medical appts, read and inform myself about new science and trials, but otherwise ignore this diagnosis as much as possible. It helps to only confide only in a your closest family/friends, given that treatments and prognosis for so-called terminal breast cancers are massively misunderstood by the general public, which is completely understandable because they are evolving so rapidly. Many say to treat it like a chronic condition, so I do..
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The first thing we did was take out my ovaries (10/3) and I've started the Anastrozole pills. I'm getting my teeth cleaned so we can start Denosumab. He said we can wait a bit on that because my bone density is good. I have trouble understanding how my bones can be good and crumble under the weight of my body. The techs who did my MRI's asked me if I had been in an accident.
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Pattyp so sorry you have to go through such difficult time. Will you have some company while your husband his away? You went through so much, you did the right thing. Hugs and more hugs.
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Zar thinking of you. You are for sure doing what you can. I am learning patience, that's for sure. Totally contrary to my type. Hope is the best friend. Hope this pain subsides.
LindaE that's just great. Happy dance. What a torture, all this wait. What a relief.
Sherri all I could help you with, is that Dani has extensive mets everywhere, they only radiate if it's truly painful, or in one case it was impeding into the spinal canal, that's kinda emergency rads.
Barbs hope you get the results soon and you could move to the treatment that fits. How blessed to have your loving daughter, and so much to look forward to.
Cure-ious your post rings so true, this is how Dani goes about her life. She is on top of the whole thing, but really tries to let it go. I honestly don't know how it's even possiblem, considering that I don't even remember when she wasn't in some type of tx, but she is doing all she can it should not take over her whole life.
Bonniemen the idea, that so many doctors could overlook the History of someone that had been previously diagnosed with cancer is a discussion that we had many times in this thread, unfortunately.
Jen are you kidding? Back when, the progression was so aggressive, and then all of a sudden a report showed some places were stable, I was beside myself, because we really wanted it all to disappear, but so many ladies over here, were telling me that stable is a good thing, now, looking back, yeah, really sexy!
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well fatger in law died within a few!united of being taken off the ventilator sunday am. D and dss left Monday am to e there. I am having not being there to console dss. Dh is getting a very small taste of how hard it's going to be when I die. Ugh. Hate being out of control.
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Patty sorry to hear your FIL passed. I agree it's hard to accept things that aren't under our control. I will send prayers for healing and comfort for your DH and dss. Please don't feel like you failed somehow, I'm sure your dh knows you support him. Sending you (((hugs))).
Aurora
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thanks Aurora
Monday I went to Ortho surgeon for trigger thumb. I got a cortisone shot and already have much relief. Dh scared me saying his cortisone shot was the worst pain ever. Then the dr said in the thumb and wrist is probably the most sensitive area and he has had grown men cry. Said it will be worse on Tuesday and then start healing Wed. Well I got myself quite worked up. But it was all for nothing. The shots were minor and actually today's it's much better. His nurse said that's the difference in men and women's pain threshold. Lol
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Patty. Sorry to hear about your FIL. Your DH knows that you support him even if you're not with him
Happy to hear the shot was much better than expected and your thumb is better!
Bab
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Patty so sorry about what your family having to deal with 'it' so up close. Yeah, I totally get what you are thinking your hubby is going through. No words. Take care of yourself. You did smart of taking care of the thumb right away.
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thanks all for the information and advice. I got the scan results this morning and it looks like all areas responded favorably, even that scary new bone met. This is the second time in two months my mo has responded "wait and see" in a crisis and been proven right. It's so hard not to knee-jerk panic, but it lookslike i can breathe for another two months.
Patty - I had to laugh. I've been pushing the people around me to get flu shots since I can't and my counts bottom out every cycle. Id hate to miss a chance to socialize because someone is sick, especially around the holidays. One friend said she doesn't get a flu shot, she can't because she can't handle the needles. Ha! That's something I got over real fast.
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sherri. Glad to hear your tx is working. Yea.
I have been so lazy and enjoying it but now I am ready for them to get back. Can't imagine living alone while fighting stage IV. Much respect for those of you who are living alone.
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Sherri glad your treatment is working!!! You can take a deep breath now!
Babs
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Sherri - excellent news! Seems your MO is on top of things.
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Sherri that's fantastic.
Patty hold on...
Babs they don't have the answer yet?
I am trying to figure out why Onco is requesting "unstained slides" from Bone biopsy? I was trying to Google it, but could not see anything that would explain, what they are looking for with the specific "unstained" slides. Did anyone ever hear of it? Thanks
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momalltgetime. I have no idea just wanted to say you and Dani are on my mind slot during prayer time. Keeping your family uplifted in prayers.
Since no one is home ivebeen on my own sleep, eat ,wake schedule. Took a nap today from 5:30 - 7pm. Hope this doesn't mean I'll be awake all night now. Oh well.
Hugs all.
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Thank you so much sweetie. Your schedule is for sure upside down, you are in your own home, you are used to being there for others, and now it's about you only.
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Warning I posted this in different thread.
QUESTION: I am trying to find out the following: I have asked in the past for progress notes from the RO (I've gotten from this one and from the past RO also), from NeuroOnco that we just visited, from surgeons and even from past Onco. This week,when we asked for the progress notes from the current Rads treatment, the secretary said oh no, we don't give this to patients. I know she is wrong, we are entitled to reports (call it what you want). But before i speak to Administrative secretary, i don't appreciate it when people that are secretaries wave the power flag, I wanted to ask - How did you, ladies, get some records from any of your visits. The scans we get from the Radiology, no problem. Blood work is accessible also. But there is no info in the Portal from the visit or assessment of doctor.
I like to have paperwork with me for many reasons: first I like to see what they wrote. And also, it's much easier to have the paperwork if one wants to ask a question either to the current doctor or take it to a 2nd opinion, I don't need to beg the secretaries to hurry it up etc..
It's certainly one last thing we need to deal with now. I requested something that pertain to me (the patient), and it should be, yes ma'am of course.0 -
Hi all,
trying to slowly come back here every once in a while to check & see how everyone is doing.
Momatt, glad to see you, hope Dani is doing ok. I'm afraid I've not been keeping up with reading. I do know that she had to change treatments, hope they are kicking a$$ (cancer's not Dani's)
Patty, nice to see you here too as with everyone, familiar faces & new ones as well.
Heading out to Vancouver again, the traveling is getting old. Will be starting cycle 5, don't know what that will bring. With my counts being so low last time. I'm sure they will start me on 100mg again, but whether I stay there or not, only time will tell.
take care everyone, hugs to all, cheers, dee
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Dee hope for the best for you.
I left a message for the doctor regarding my concern in the prior post, we'll see what she says.
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dee. Great to see you!
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Momallthetime: They SHOULD give you the records. I had to get all mine to submit for disability insurance (I made a copy to keep for myself). Some of these clerical people really are on power trips. If you see an outside dr, you also have to get all your records for them, too.
I'd ask them what's the deal?
Lita
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Momall I've managed medical practices for 10 years now and dani is entitled to all of her records. We gave them but there was a fee involved. Write a written request and they have to honor it. Ask for all medical records. That secretary has no idea!!! How is Dani doing by the way? I think of you both daily!
Hi Dee!
Patty with your new schedule you sound like a child that had her days and nights reversed!!! Just enjoy your time alone. Simeothats a gift!!!!
No news on my biopsy yet!
Bab
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Dee nice to see you here, yes it's a lot of travelling you are such an inspiration to me🤓
Momm of course she has the right to her reports and records. That's just craziness or a crabby hospital worker.
Barbs I'm crossing all my fingers and toes that your results are positive. We always make it worse in our heads I think. Now having said that it have another CT scan on Monday...hate those things but it's a nessecary evil.
I wish all of you lovely ladies a wonderful inspiring weekend
Wendy
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hoping for the best for your test Wendy
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Wendy hoping you get good results
Bab
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Wendy: I have a scan on Wednesday. A lot riding on it...I'll either stay on Xeloda a little longer or have to be switched.
Hoping for great results for the both of us
).Lita
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