Bone Mets Thread
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Thank you so much for the love, prayers and support! My appointment isn’t until 3:45 this evening...but still praying for end of day results. Love and hugs to you all!!
Desie
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Jenny - join us over on the Ibrance thread! And good luck to you, MTN!
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Lauren - Thanks for responding. So happy for you to have a painless bone met and then Zap it away:)
I have one that is 4mm but it felt like a pulled muscle, originally. When the discomfort returned a biopsy was done and found to be the original breast cancer diagnosis. My surgeon recommended radiation also. So, hopefully that will be the treatment.
I have had x-ray, CT, Pet-CT and now a dedicated MRI as they saw a, during the Pet-CT, a "small focus of activity seen within the capsule of the tip of RIGHT lobe of liver" calling it a area of decreased attenuation which is nonspecific whether this represents an early metastatic focus or possibly a small hemangioma is uncertain. Recommendation is a dedicatied MRI scheduled on the 19th. I am bracing for the small metastatic focus sense I am already a high risk patient from 10 years of being free from cancer-I thought. Not sure what treatment for that would be hopefully both could be dealt with radiation.
Some one posted that my tumor load was small called oligometastases which would me a certain treatment. I think that would be a good thing.
Hugs to you - have a good day. Annamaria
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Well, had my mri yesterday. The tech said they mentioned looking for a Meningioma and something else in an area of interest. The report has been read, but they won’t give me a copy until the dr signs off on it. They’ve always given me a copy of the report until now. I’m wondering if there’s something else there that they want the dr to tell me at my next appointment? I hate the waiting game!
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Read on John Hopkins “Ask an Expert” bone Mets do not metastize to organs.
Is this something any of you ladies have heee fro your docs or other sources
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Amp47, I’ve never heard that about bone mets but I know that after chemo and surgery, my MO was not overly concerned about the iliac lesion I had at diagnosis. It wasn’t radiated and is stable, we’re currently watching it as a thermometer. I suppose if they thought it was more dangerous, it would have been treated specifically.
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Breast cancer can metastasize to bone and organs. Bone cancer is a different cancer altogether
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Breast cancer Mets in bone CAN metastasize to Organs. Happens everyday.
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TNMTGAL....Waiting with you for your results. You're on my prayer list.
Hope
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Nona...thank you so much!
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Do any of you use a cancer app on a smartphone to track side effects, etc? Do you have one you would recommend?
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A cancer app huh? I don't know why I'm surprised, I suppose there is a app for everything.
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yep, I’ve seen two of them. Would love a real review...
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Here’s my mri report...
1mm enhancing nodule in the fundal portion of the left internal auditory canal. Differential considerations include neoplasm verses less likely coursing prominent vessel.
Indeterminate tonsillar ectopia measuring 5-6mm.
Mucous retention cyst verses polyp Verses herniated fat due to a tiny lamina papyracea appreciated defect in the mid left ethmoid sinus.
I have an appointment tomorrow at 1:00 with my neurologist
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TNMTNGAL...That is a very tiny nodule, but could very well be causing your symptoms. Please keep us posted. Will be with you in spirit tomorrow!
Hope
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Re: cancer apps for your phones. Please be sure to read the ToS before using one. I was very interested in ChemoWave,which among other things allowed one to track the patterns of symptoms and side effects (I keep paper logs when I'm having a problem that I want to track). After reading the Terms I refused to use it - it allows disclosure of personal health information to third parties - specifically investors and potential buyers. Since it was a start up, I knew they would eventually try to sell the app or at least solicit investors, which is why they included the clause. Just to use the app you needed to enter your DOB and city. I'm not sure how they could get around HIPAA laws, but I guess if you voluntarily consent by accepting the ToS it's okay.
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We all have to be so careful these days. I hate buying/ordering stuff online and putting my info out there, but that's pretty much the way people do biz nowadays. Lots of scams out there, and once your info's out there, well, it's out there.
Last week, I found out I was the victim of identity theft at THE MEDICAL FACILITY...now how in the hell did that happen?!?!
The nurse told me people are getting craftier and craftier about this. Fortunately (at least for now), there was no money involved with the ID theft, but still, VERY unsettling.
L
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Lita - that is awful! Can’t even trust your medical facility to keep your information safe.
AMP - do you have a link to the article you read? I’d be curious to read it. People do get organ mets after having bone mets for sure but perhaps they are saying that the organ mets originate from other wayward cancer cells stemming from the original cancer and not directly from the bone mets themselves. Very interested in reading what you found.
Love to all,
Lauren
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I started a separate thread with questions a few weeks ago as did not see this extensive thread......
I found out I had mets in my back at an A and E visit due to severe back pain.......I eventually paid for a private MRI and that clearly showed extensive mets throughout my back but also a fractured vertebra and bulging spinal cord.....I was at risk of permanent paralysis with any movement. I was taken straight to a neuro surgery ward, put in a back brace to stabilise my vertebras and then operated on with cement put in to the shattered vertebra (chest level). Two weeks later I had a simulation scan for a one hit extra powerful radiotherapy session and that found two further fractured vertebra above the one operated on. So they did radiotherapy to three vertebra areas plus some ribs as my ribs move when I walk but as I am on high doses of fentanyl patches they dont always hurt. The radiotherapy initially increased pain but it has now reduced........
Biopsy showed zero receptores of anything so all they are offering me is weekly Paclitaxel. They say without treatment I will get worse and I know that I am getting worse even during my two week "rest" post radiotherapy.......... I am very unhappy about this especially as it IS lobular cancer, as before, in the bones, I was 98% ER pos before and very high PR post too...... however as they had access to the shattered vertebra they were able to get good sample to do a biopsy on. She says weekly chemo like this is easier to monitor, lower dose, I wont lose my hair(??) and should show effects within the first couple of sessions. Has anyone done weekly Paclitaxel for bone mets?
Is there anything else I should be asking about?
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Lily...I had 15 infusions of Taxol (paclitaxel) after finding cancer cells in my bone marrow (via bone biopsy). I initially was on Inbrance/Letrozole for my bone mets. My hemoglobin kept dropping, thus the reason for the bone biopsy. The Taxol took care of the mets in my bone marrow. I, since, have been back on the Ibrance/Letrozole for the past 11 months with stable scans so far. My Taxol infusions were 3 weeks on, then a week off. I did lose my hair with this treatment. I tolerated the drug very well. My only side effect is neuropathy in my feet. Hopefully, you won't encounter that. Good luck!
Hope
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Thank you Hope, my most recent blood tests was "all ok" apparently from my visit to A and E due to vomiting from the Fentanyl patches........I stopped hormone treatment as had done 6 years.......but was not Stage 4 then.......
I am VERY worried about doing any kind of chemo as I only have one kidney, I cannot tolerate any anti histamine medications as they give me mega heart palpitations and steroids make me feel lousy and are also dangerous for me..........and I am concerned they are going to stuff me full of those before the chemo......I am so scared they will damage my kidney, that is not 100% and dialysis has always been one of my scariest fears having been a month away from it twice in the last 15 years.......but my kidney function is a lot better than that now........
The Oncologist has said Paclitaxel weekly will not harm my kidney, that they will monitor closely as doing it weekly and that I WON´t lost my hair..........how can that be?
Sorry if I sound like a wimp......I start chemo next week.....
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If you're doing taxol, get some freezable ice booties for your feet and wear them during infusions. You can also get ice gloves. It really helped me NOT get peripheral neuropathy.
Unfortunately I have Fred Flintstone feet and stove pipe rhighs because I'm on GEMZAR.now and a major SE is edema.
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Lita, I'm also on Gemzar and have sausage feet. I have also had 8 blood transfusions because the Gemzar is knocking down my HgB to 7.1 on the week off during the past couple of months. What is your MD doing about the edema? Lasix doesn't seem to work. I'm also trying compression stockings. Lisa
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I am on Gemzar too! I have Flintstone feet and had 2 blood transfusions for low red cells. It knocks my platelets back too, but I had a reaction to the platelets the first time they tried to transfuse, so they just don't seem as eager to try again.
It's also the first protocol that I've gotten neuropathy. MO has said to keep my feet up whenever possible and to drink more fluids than I want to, as that has a diuretic effect. I wear very attractive compression socks. That grunting sound you hear every morning? That's me, putting on those darn socks. There are actually some cute ones on Amazon, and I lucked out at the local TJ Maxx, because I picked up a couple of pairs of polka dot compression socks for $5 each.
Lisa - 8 transfusions! They take forever, don't they?
Lita - You are the human embodiment of the Energizer Bunny. How do you do it?
Jennifer
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My Phys Therapist ordered the "thigh high" compression stockings for me. It take at least 2 people (if not 3) to put the damn things on. They do work, if you can get them pulled up
I also have the compression capri pants that she ordered. Those are almost IMPOSSIBLE to put on. Since I have both fecal and urinary incontinence issues from time to time, I don't wear 'em. To hard to pull 'em down, and I've had more than a couple of "blowouts" since wading into this cancer adventure.
Yep, lasix doesn't work for us cancer people...it's more for congestive heart failure. My older bro takes lasix, and it does help him. I hate the fact that you have to drink more fluids, but that's the way it is. I do watch my sodium.
As I wrote before, once you get edema, you have it for life.
We just have to embrace our Fred Flintstone Feet, sausage ankles and stovepipe thighs
L
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hello! Thanks for all of the helpful info. I started Xgeva on Thursday. Anyone else feel like their jaw is buzzing? My teeth are are extra sensitive. What are the symptoms of ONJ? Should I be worried? Can it happen quickly or does it take a while to develop?
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it doesn't tend to be spontaneous. It is usually due to an injury to the gum or to the bone. I was only Xgeva for a few months when my tooth broke and it was pulled (it should not have been pulled). So it was pretty quick to me, but thats probably the exception. Just take good care of your teeth and mouth. You should be fine
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Jennifer and Lita, Thanks for responding. I have been on Gemzar since October and haven't had any trouble since the last two months. My thyroid is now super hypo (22) and trying to fix that which I thought was the problem. I talked with Hartrish and she has been on Gemzar over 15 months with no issues. She is so lucky. I am wondering if I take a short break if that will make a difference. I also take Lynparza (parp inhibitor) two times daily, so it won't be like I'm not taking any chemo. I hate to be taken off Gemzar a it has been by far the easiest chemo minus the current edema. My last scans showed no new Mets and current Mets are stable. CA 27/29 just dropped to 34. I hear you both on trying to get these compression stockings on. It's a real struggle. I also have to take my shoes off at work. Great score on the socks. Last week they found extra fluid around my heart, abdominal wall and left lung, so annoying. So it's sleeping propped up or I hear crackles. Hopefully, it will get better for us. Prayers and hugs for everyone...Lisa
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Lily...I'm sure your oncologist will watch you very closely. Plus, you will be getting regular blood draws. They will monitor any abnormality pertaining to your kidney.
Hope
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Hello! I’m getting a second opinion about my overall treatment planwith an MO at Dana Farber tomorrow. Any bone mets specific questions that I may want to ask that I’m not thinking of yet? I have one lesion in my left 4th rib and a sprinkling of activity on the other side. Currently on Lupron, faslodex, ibrance, and Xgeva.
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