Bone Mets Thread
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Thanks for the prayers, Candy, I'll take all I can get. I'm starting my last taxol/gemzar cycle this Friday. Then I scan in a couple of weeks to see where we are. In a perfect world, which has not been the one I've inhabited lately, the chemo combo will have knocked back the mets, I can start having regular food, and have a nice long run on an oral chemo regimen. In the meantime I'm trying to build up a little stamina and am able to sip on broth and tea, so heading in the right direction.
Maire, check in when you can and let us know how you're doing.
Sending love and hugs to all
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Jaylea- I will be praying for your scan results. Please keep us updated.
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Jaylea - you are in my thoughts and I am sending so many positive vibes your way!! I am not one who prays but I do believe in the power of positive thinking and I am sending all that positivity your way. You have really been on quite a journey here these past few months. Sounds like you are healing and I am so happy to hear that you are able to drink broths and liquids! That is a huge success! I hope you are feeling okay through all of this and able to keep your mind occupied with things that don't keep whirling around the C word too much.
With love and hugs,
Philly
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good morning everyone! How is everyone?
I had a lot of trouble sleeping this morning due to a left leg and buttock region pain/ache that I couldn’t find any comfortable position for. This is a new one for me. Now that I’m up and about it is still aching. Hoping that it’s another weird and random sensation passing through cause this is a new one for me.
The only thing I can think of is that I took 2 weeks off letrozole and have now been back on it for a little over a week and maybe that’s causing it?
Any advice or thoughts? I’m about to take Tylenol to see if that helps at all
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Changedmyname... You might want to ask your palliative care doctor about Lodacaine patches. You get to apply them to the areas that hurt the most.
I am experiencing similar aches shooting from my lower back down to my left hip and leg that make me limp when I walk. The lodacaine has been very helpful. I started yesterday...
I hope you feel better
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thanks miaomix! I am glad I’ll be seeing then on Monday. Took Tylenol and it isn’t helping.. I’m going to go to the gym later and see if exercise helps me get my mind off it and maybe I can work through whatever it is (really hoping it’s not bone mets related 😬 and just a fluke of muscular pain).
I’ll report back!
Love!!!!
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I have bone mets EVERYWHERE: spine, sacrum. illiac crest, pelvic bones, femurs, hips, you name it. Also mets to internal organs. I use a combo/rotation of Salon Pas patches for the milder pain days (Palliative Care Dr recommended those cuz he uses them as well - he fractured his spine some years ago), and Rx Voltaren Gel for when it gets pretty bad, along with CBD balm (the non-psychoactive component of medical MJ). Pain pills don't really do Jack Shiza for me, and they crank up my liver enzymes.
I also take CBD tincture so I won't have brain seizures (I have more than TWENTY brain mets). The CBD tincture also helps with sleep, anxiety, and a little bit w/pain.
I had the shooting, paralyzing leg/buttock pain when I was 1st Dx'd. They radiated me, and that helped tremendously. I had to go back in for more sessions last year on my sacrum because I became TOTALLY incontinent (#1 and #2 - BOO!)
Try to hang in there, ladies. I know it's a crap deal (forgive the pun - I'm still wearing Depends to prove it as I still have the occasional accident. (Number 2 accidents aren't fun, ha ha...)
L
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So my insurance denied my PET scan. My Onc is a scanner, wants a PET every 3 months, but insurance said no. Now he's ordering a CT of just about everywhere and a bone scan which are the only two tests in the world that I've never had.
I know with PET scans they inject me with tracers, do they do that with CT's? Tell me what you know about CT's and bone scans please
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Hi Lita, thank you for sharing what has been working for bone pain....this morning I woke up with extreme weakness in my right arm and left leg and the lodacaine patch is not doing me much good this morning.
Maybe it's because i'm also recovering from a biopsy to my liver that was performed yesterday.
Two years ago, I had the exact same symptoms, and this Chinese acupuncturist managed to get rid of all the aches and pains after just one session. I'm anxiously waiting to call her, hoping she can see me sometime today....but will she be able to perform the same miracle twice in a row? We'll see....
Best of luck to you! Mina
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Peaches, my dr only orders ct and bone scans. Said Medicare will only pay for 3 pet scans per diagnosis. But I'm not on Medicare yet ! I hear it is pretty standard.
One scan follows the other by about 1.5 hrs. Got stuff to drink for one that doesnt taste bad at all and injection for other test. You can drive yourself unless you need something for anxiety. No eating before ct scan but i do after and before bone scan.
Gailmary
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- BigPeaches, a lot of us get the CT/bone scans now due to insurance unwilling to pay for PET. They say it's the cost, but the ridiculous thing is, from what I can tell, the cost of the two tests ct-bone, is about the same as one Pet.
Your doctor may order a ct with contrast, meaning you get to drink that barium or iodine based liquid. And there is an iodine-based iv contrast that goes in the veins during the procedure. A ct scan is really pretty quick compared to other scans.
I get both scans the same day. Nothing to eat for three hours before ct scan. I report first to the nuclear medicine department where bone scan is don, get an iv in place and a radioactive tracer is injected. It takes a couple hours for it to move through the body. So, I leave nuclear medicine, still with iv in arm, go to the ct scan dept, drink the barium stuff and get the scan. They use the iv to administer the contrast. After the ct, the iv is removed. I go get something to eat, bone scan doesn't require fasting, and then report back to nuclear medicine whatever time they've told me to return. The bone scan takes about 30 or 40 minutes.
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Lita I love you and love your posts! Thanks for that and while I know the incontinence (1 and 2) really isn’t a blast, your humor around it sure helps. Do you think the radiation caused the incontinence or the mets did? Or both? Thank you for the recommendations. I’m not a fan AT ALL of pain meds...will avoid them until they are absolutely necessary. 20 years ago I used to take them for “fun” and honestly I didn’t even have any fun on them. It was simply what all my friends were doing. I always felt sick on them
and sometimes I got sick on them! So I don’t have a very great memory of opioid pain meds.Miaomix - as a practitioner of Chinese medicine, I really hope your practitioner can help you too! Don’t give up if it doesn’t help in just one treatment. Sometimes it does take 3-4 treatments to get us back on track. We are all always incredibly grateful when we are able to get issues to shift in one treatment! The fact that it worked before for you so quickly is a good sign that it should work quickly for you again! :-)
BigPeaches: I have never had a pet scan in the two years since my diagnosis (or ever in my life, actually). I have always had CT scans - which you do drink some thick milkshake type thing (that I really don’t care for because they’re sweetened with artificial sweeteners which I detest the flavor of), and nuclear bone scans.
I do them both in one day. First I get an injection for the bone scan (which needs a few hours to saturate the bones) and then they send me off to get the CT scan. I drink the drink (two bottles) and then they bring me back and yes they do inject a contrast dye that makes you warm and feel like you may have to urinate (this feeling lasts about 30 seconds). Then I go back to the bone scan area and then bone scan you just lay there and it is actually kinda peaceful. They give me warmed blankets and strap you down.
I take 5-10mg of Valium for the day and it helps me tremendously with my nerves/anxiety. I don’t know how people do it without honestly!
Also, I get diarrhea from the CT milkshake drink. It usually happens about 30-60 minutes after the scan is done. Just a heads up! My tummy doesn’t agree with that drink too well.
You are to drink LOTS of water after the scans to clear out the dyes from the body.
Good luck!!!! Love and hugs,
Philly
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Wow! I've had 4 CT scans in last few months and have never been told nothing to eat but since mine are always early morning, the most I've had is coffee. I have one scheduled for tomorrow. Think I'll call my ONC. Thanks for heads up.
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yes I’ve never been told not to eat either. Usually that’s for colonoscopy or endoscopy prep or surgery prep... Maybe they suggested it so there’s room for the gross barium shakes??
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Yes, a nurse always calls a day or two in advance of the scans and reminds me of the fasting.
Oh, and Ichangedmyname, you are so right about the barium contrast drink coming right back out! I am in and out of the hospital restroom many times that day, as I get both scans in the morning then wait around for my doctor appointmentin the afternoon.
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I've also only had CTs and bone scans but have never had to drink the barium milkshake - go figure? I do have contrast injected in my vein during the scan - the warm sensation that feels like you have wet yourself always surprises me!
As to the fasting, quite often the order indicates fasting but the technicians have always advised that it is not necessary. I suspect it has to do with what they are scanning and whether or not a full stomach will impact views. There may be some variation depending on the location of the mets.
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Okay.. I was curious so this may solve the mystery:
A patient undergoing a CT scan with barium is typically instructed to drink large quantities of the liquid compound at set intervals leading up to the procedure, often several cartons' worth. All other foods and beverages must usually be avoided, even water. Anything but barium in the stomach can skew the results. Barium acts as a contrast agent, and causes the stomach and intestines to show up better on the scans. This usually contributes to more accurate diagnoses of what are often complex intestinal conditions.
So... for those of you having the barium, fasting is required as they are looking to view the intestines/stomach. Without the barium cocktail I suspect fasting is not necessary. Oh... and Ichangedmyname, the site notes that barium causes nausea and loose stools so you are not the exception.
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Just chiming in. I had 1 PET at diagnosis in Sept 2017. My insurance denies another due to CT's without progression. I was told by my MO when/if progression on CT they will ask insurance company if I can get a PET to look at things then. I get a CT of chest, abdomen, and pelvis every 3 months. I have had 1 bone scan in late 2018, no discussion of future bone scans.
I am told not to eat or drink 4 hours before the CT. They give me 1 liter of a contrast to drink and I have 1 hour to drink it before the CT. It is lemonade flavored and consistency of water. They then start an IV and give IV contrast during CT--Yes the one that makes you feel warm and like you peed your pants. The only side effect I have after the CT is frequency/urgency of urination. I am told to force fluids after the scan to rid the body of the contrast.
Interesting the differences we all share. I guess a little different due to different areas of the country and different insurance companies. ?????
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Peaches, I'm on Medicare and get a pet/ct scan every 4 months since March of 2018. Never been denied. I've also had two Ct with contrast to determine where pain was from in hip and back. My pain management doctor said if tests may change the treatment he had never been denied. Maybe your doctor doesn't code and document reason for scans correctly
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Jaylea I thought of you while I was in Ca. meeting my grand baby. Catching up just now. You are so positive and sending hugs to you and also Lita.
Just back and had infusion today. MO is setting me up for an MRI of brain and a Pet/Ct . She is thinking since femur pain is improving there is no rush. It will probably be June before I get approval. I took a 2 week vacation from letrozole. I was feeling stronger in Ca. The weather and flowers are so beautiful in the Bay Area. Back on letrozole today.
Best to Joyner, Pat and the Ibrance Dancers.
Mair
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For the CT scan discussion, I’ve only had CT’s and Bone scans, never a PET. Oral contrast is required but it’s not the nasty stuff some drink, in fact I’ve never tasted anything other than the mix (OJ in my case). Mine are always scheduled early so eating after hasn’t been an issue. Instructions below, FYI.
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Wow, illimae.. CT scans sure seem to differ across the country. I just had mine yesterday. My experience, I always have a bone scan, CT scheduled for same morning. Apt time was 9am. It actually started at 920. I had the nuclear tracer injected, (the line end piece left in arm for the CT scan) sent back to waiting room with my two glasses of drink. The tech said he would come for me at 10, which he did and by 10;15 the CT part was over. So, appx. one hour, start to finish.
Since this conversation started I asked the tech. why I was not told to fast. He explained it just like Sadie had said. By not eating you can drink more of the Barium solution. He also, said that some ONC. never tell their patients to fast. (for whatever reason) He also said, that they had stopped using the "barium" since it was causing too many to have nausea and diareaha (sp) So I actually drank something different but I cannot remember what he called it.
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Hello. I was on this bc site when I had my first cancer and then off for a while and now returning with Stage IV. Here is my story. I had breast cancer in 2012 with double mastectomy, no recon. Some problems with medications, especially anastrazole (it's a horror story) which finally (mostly) abated in 2018 which was my best year ever in such a long time. Really felt like myself again.
In 2019 February I started having some digestive issues and after several weeks doctor ordered blood and urine tests. One thing led to another and there were ultra sounds, scans, etc. referrals to specialists, all looking at my pancreas and gall bladder; looking for pancreatic cancer. I was having 2 or 3 medical appointments every week since Feb 22 and it was all very stressful and tiring. During the course of their looking at my pancreas and gallbladder some of the tests showed lesions on bones so they tested for that and found Stage 4 breast cancer, identical to my earlier one. And in the middle of it all I started having big headaches which turned out to be from High Blood Pressure, which I had never before had in my life. Now , have to adjust to this new medication, in case there is not enough going on already.
We found an oncology team for the bone mets that we liked better than the original one and shifted our care to them, but were still wondering if there was pancreatic cancer or not. Could have turned out to be a complicated situation having to treat both. Finally, on Friday I got the call from the most recent sample that the biopsy showed negative for pancreatic cancer and positive for breast cancer - - the exact same cancer as the other. So, thankfully, we have ONLY ONE KIND OF CANCER to deal with. This will make treatment much easier. I can renew my magazine subscriptions and still buy a green banana from time to time. Only people of our association can appreciate the humour in that. and my happiness when I say that I have only one kind of cancer.During the course of exams and procedures, they installed stents into my pancreatic duct and my biliary duct on March 7th. Those were supposed to be temporary. I had scopes done on Monday April 29 again and they removed the pancreatic stent, took more biopsies., . The tumor is not in or on the pancreas, but next to it and has caused the duodenum to get narrower so much that the scope would not fit through and therefore they could not remove the biliary stent, which they wanted to replace with a metal one. We shall see what they come up with because, obviously, if we wait too long that duodenum will probably become closed and that will be dangerous. My onco doc and GI doc will be consulting on this and probably let me know this next week. So we do have this tumor issue near the pancreas, but most of my Stage IV is in the bones, so I call it bone mets. And this is my story.
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Could it be Gadolinium or Iodine in the contrast dye?
Oncowarrior, sorry you have joined us, but good to see you too, you are a powerhouse of energy....
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Hey OW, I remember when the Wisconsin thread was quite active - have you found it in the 'new' location?
Now we are both in the bone mets club. There is also a peritoneal carcinomatosis group here, if that is what the other tumor turns out to be. Many of those gals have had GI issues...
I was just at the Komen MBC conference in downtown Milwaukee last week. Lots of good research going on so there is much to be hopeful about!
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Insurance driving me nuts!
I have Anthem Blue Cross PPO. I have lymph node metastasis of lobular carcinoma in axillary and chest nodes plus I had met in T6. My UCLA doctors recommended stereotactic radiotherapy - one blast - to T6. I had it done two weeks ago and pain is gone. I'm also on Ibrance and Letrozole.
Insurance says even after appeals from dr that they won't pay for my radiation to back because their guidelines say I must have failed first at another radiation. Crazy! Why not have the most targeted and efficient...and also less cost to them if I only have one time rather than a dozen.
Any ideas, sisters? Two doctors have sent appeals, and then requested another review (denied, also). Has anyone gotten this type of decision reversed?
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You might try posting this situation on the Employment/financial board: scroll down the list of topics to find it.
During my early stage treatment, I successfully fought Anthem a number of times on various issues. Once, my appeal was heard by phone (they rejected my claim for the 'cranial prosthesis' required during chemo). Twice, I went before their committee to protest their denials of an MRI and genetic testing. However, my best move was to report them to our state insurance commissioner's office for refusal to pay for imaging and lymphedema equipment which both had prior authorization. For that neglect and delay they were assessed fines and interest.
It sounds to me like their guidelines need updating. Your argument that a single rads treatment is less expensive makes sense but probably falls on deaf ears. After all, the only way they make money is to not provide benefits! I really think they figure that most people will just give up. If it were me, I would first carefully read the pertinent parts of the policy probably available on line. Then I might collect recent articles from radiology journals to support stereotactic effectiveness. Preserve your right to present your case in person. Good luck - you’ll need it...
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I have Medicare (Primary) and Anthem (Secondary). I've never had to appeal anything. I guess I'm blessed. I have CT's (with both oral and IV contrast) and a Nuclear Bone Scan -- every 4 months. Plus, have CBC and CMP blood workup every 4 weeks. I know Anthem has several different policies to choose from. Maybe, that's the difference.
Hope
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Oncowarrior,
ThePeritoneal Carcinomatosis thread is for anyone who has mets in the abdomen. I believe you mentioned your pancreas.? I have bone mets as well as mets to my stomach lining. It's a small group but lots of very valuable information
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