Bone Mets Thread
Comments
-
OK, to locate the geographically based threads, you need to scroll way down the list of topics until Community Connections appears. Then look for Member Matchups.
I recently took another look at where anatomically the peritoneal area extends to - basically it goes all the way up to under the diaphragm. For me, radiology noted 'omental stranding' and deduced from imaging that carcinomatosis could be present. I think the only way to confirm such a diagnosis would be to biopsy and, since I'm asymptomatic and treatment is likely to be the same anyway, that is not part of the plan right now.
However, since OncoW has a tumor near the pancreas which seems to be threatening the duodenal lumen, I thought she might learn from the gals over on that thread. Intestinal obstruction is not a fun outcome...
0 -
Don't you think that they would have told me if I had Peritoneal Carcinomatosis?
0 -
Onco-doc called today. She has conferred with pancreatic and GI docs and their main concern is the tumor more than the bones just now. They want to use chemo to shrink the tumor and so there will be my port installed on Friday. Monday we meet to discuss chemo options, also to make appointment with GI doc put in a duodenal stent, and get a palliative care referral, and have first zometa infusion.
It's gonna be a helluva summer, my friends!
P.S. She did not say "Peritoneal Carcinomatosis" so I'll see if she does so on Monday.
0 -
Hooray for ports. I had one eight years ago and am beginning to wonder when I will need to get another placed. The several units of blood I required after last summer’s spinal surgery, not to mention all the needle pokes in my good arm from the constant parade of lab personnel during my 2 week hospital stay turned me into a ‘hard stick’.
Beware of the initial Zometa and the flu-like syndrome which often occurs. I got through it taking acetaminophen. Subsequent infusions have been no problem.
0 -
I like this.
0 -
Question for the bone metsters---
I have bone mets in my spine--cervical, thoracic, and lumbar. The CT's I receive every 3 months for monitoring the liver mets always say "sclerotic lesions noted without change". My MO never discusses the bone mets status---she is more concerned about how the liver is doing. I also have rheumatoid arthritis for which I am currently not on treatment (stopped at breast cancer diagnosis and never went back on meds). I am having pain in my back (spine) --about the level of the bra strap along with pain in the sternal area. It is a burning, aching pain.
So question---if your bone mets is stable on treatment can you still have bone pain from the cancer??? Or if the mets is truly stable is there still pain??
I know my pain can be the arthritis. My mind always goes to the cancer when I have a symptom.
0 -
hi candy, I'm speaking with little experience as I have only 1 met and its in my arm. My dx was 2 yrs ago now and it was severe pain in arm/shoulder area that led me to Dr for mri that found it. I received radiation soon after biopsy which took csre of 92% of the pain. That met has been stable over a year and it still pains me occasionally- usually when its cold not from over use. And I work it hard out in the woods and garden. But just an ache and not that sharp pain prior to radiation.
I have yet to learn when it is decided one gets radiation. It guess you don't get it automatically.
Also you didnt mention specifically bone scans. Im assuming just a ct for the liver. Is a ct scan enough to show the bone mets are stable? Dr should be concerned with all of it of you have pain. Im sure the arthritis dx gets in the way but she should rule that out as the cause.
Is it time to treat the arthritis again? Good luck.
GAILMARY
0 -
My first Zometa infusion was the worst & included vomiting & pain on the toilet. I had mets to my breastbone and had lots of pain there. An infusion nurse suggested taking Benadryl the day of my infusion and first couple days thereafter. That suggestion seemed to help with flu like symptoms, etc.
0 -
My first Zometa infusion was the worst & included vomiting & pain on the toilet. I had mets to my breastbone and had lots of pain there. An infusion nurse suggested taking Benadryl the day of my infusion and first couple days thereafter. That suggestion seemed to help with flu like symptoms, etc.
0 -
Hi, I have bone mets. I get PET Scans but if my doc was to do CT scans she would give me a bone scan along with it. I never had any pain from my mets but if I WAS having pain, I would most definitely tell the doctor immediately and ask about bone scans if you aren't getting them.
0 -
I have had 1 bone scan--last fall--undetermined results due to the arthritis. Stated "no definite evidence of metastatic disease" but then said uptake in spine, clavicles, shoulders, elbows, wrists, hips, and knees. I guess the scan was confused with the rheumatoid arthritis issues also. The CT is of the chest, abdomen and pelvis so it shows the bones in that area. And the CT always comments about the sclerotic lesions in thoracic and lumbar spine as "metastatic disease". My MO discusses the liver lesion and how it looks but we don't usually talk about the bone mets. The pain in the back and sternum has been worse the last couple of days. The pain in this area has came and went before. Maybe it will go again soon. I have an appt with the MO the first of June. I hate to bother the MO now unless it gets really bad. I think the MO and her staff thinks I am a bother. I just wanted to ask you all on this site if the bone mets can cause pain even if they are "stable".
0 -
Question, Since being diagnosed in march 2019 with bone mets I started taking Flasodex injections, lupron, Xgeva and Ibrance, In a matter of 6 weeks my body feels horrible. I have pain in the nape of my neck that is unbearable. I have had two blood transfusions due low hemoglobin and two shots of neupogen due to neutropenia. I have not started the second cycle of ibrance because doctor would like my numbers to improve. has anyone else had side effects like these since starting your treatment. I'm worried that these medications are going to kill me not cancer.
As for pain does anyone take CBD?
0 -
That's one of the tough things, gailmary.
I have spinal compression fractures, age-related arthritis in my back AND bone mets all up and down the spine as well as adjacent muscle pain; so it's very hard for the drs to determine EXACTLY what's causing the pain.
I use Rx strength Voltaren gel, a heating pad, patches, and CBD tincture for pain.
Some days are worse than others, and at times I wish the Lord would just let me die and take me home.
Good luck with this crap...it ain't fun at all.
L
0 -
Candy, my guess as to why your doctor doesn't discuss the bone Mets is because all other things being equal it's the liver involvement that is more concerning. That's where the attention goes because the liver impacts so much else.
Edited to add: But you certainly have the right to ask for your doc’s thoughts on your bone Mets and certainly to discuss the pain you’re experiencing and how it’s hampering your QOL
0 -
I was just diagnosed with bone mets this past February. I like this too. Perspective and attitude is key in our fight. Thank you for sharing.
0 -
Hi BigPeaches,
Not sure if anyone replied but I had the exact same issue with my insurance. For my bone scan, I had to come like 2 hours early, get a shot of some stuff to light my bones up and come back for the scan after about an hour and a half.
When I had the bone scan, my bones lit up or glowed on the screen where my bone mets were.
For the CT scans, I have had to drink that "milkshake" drink twice. I have also had to get an IV on a few of them (in my good arm, which is tired of being poked) so they can inject contrast after the first scan for comparison. Same thing when we did my brain MRI.
I am reading an awesome book called "Radical Remission, Surviving Cancer Against All Odds" by Kelly A Turner. It has been a Godsend.
You got this and I hope my comments helped.
Fuck Cancer.
0 -
OncoWarrior Update:
We have extensive bone mets and will do chemo. Today: conference with onco-doc and first zometa infusion. Thursday: duodenal stent placement. Next: followup with other docs to determine if bone cement or radiation is best for vertebrae.
0 -
Hello Ladies, I’m writing from the UK.
Briefly... bone mets in lots of places diagnosed 4 years ago. I also now have a liver met. I have been turned down for cyberknife to the liver met and also ablation on the grounds that I also have bone mets. They will only do procedures on the liver with a “ curative” purpose, that is if I had liver mets ONLY. My oncologist said treating the liver won’t extend my life as I already have it to bone. It’s not clinically relevant.
I realise I am under the NHS funding which is overstretched.
I read that many ladies in the USA have procedures to the liver ( Y90) for example, even if they have bone mets. Do your oncologists think it’s relevant? I feel that mets to bone only is better than having organ involvement, therefore I want to try and get rid of it.
I would appreciate your thoughts.
I do wonder if I was able to pay privately.... I bet they would do it
0 -
Fuck cancer indeed!
0 -
Verzenio (abemaciclib) and Faslodex (fulvestrant) starting soon. I see that diarrhea and nausea are side effects. Doc recommended immodium and ordered an anti-nausea prescription. Any helpful comments from you? Does the diarrhea subside after a while? Should I buy immodium by the case? Maybe get some Depends? Dietary recommendations?
0 -
-
I found this article very interesting. What do you think guys
0 -
Oncowarrior, most of your questions I can’t answer, but my doctor prescribed Compazine for nausea and it was the worst drug ever. I had a horrible day where I slept on and off, could not gather my thoughts or get anything done around the house. I was totally out of it. I thought it was the Ibrance I had started taking a week before. Then something clicked and I realized I was experiencing side effects from the Compazine. Never took it again and I was back to my normal self the next day! Turns out I really didn’t even need nausea medicine. Not sure what your doc will prescribe but wanted to give you a heads up.
0 -
rHello Ladies, I'm writing from the UK.
Briefly... bone mets in lots of places diagnosed 4 years ago. I also now have a liver met. I have been turned down for cyberknife to the liver met and also ablation on the grounds that I also have bone mets. They will only do procedures on the liver with a " curative" purpose, that is if I had liver mets ONLY. My oncologist said treating the liver won't extend my life as I already have it to bone. It's not clinically relevant.
I realise I am under the NHS funding which is overstretched.
I read that many ladies in the USA have procedures to the liver ( Y90) for example, even if they have bone mets. Do your oncologists think it's relevant? I feel that mets to bone only is better than having organ involvement, therefore I want to try and get rid of it.
I would appreciate your thoughts.
I do wonder if I was able to pay privately.... I bet they would do it
0 -
The Royal Marsden have a good secondary breast cancer team in their private area.........Professor Stephen Johnson is excellent and they have cyber knife there
0 -
Don't go anywhere without Imodium close by. I don't know if this is a coincidence and maybe my body just got used to the projeta after a year, but I started taking Bioten, its a vitamin for hair and nails. It isn't doing much for my hair and nails, but I haven't had diareah once since I started taking it 4 months ago.
0 -
Going to my first onc visit in 8 weeks. Anxious about lab results. Been off kisqali and on letrozole alone for 5 months. Later
0 -
good luck JoE! Thinking of you.🙏🏻🙏🏻
0 -
-
Good report!!!!! Bloodwork normal/markers on lower normal(CA15-3-0.7 CA 27 29-14) Letrozole is holding the line. Next onc visit in 8 weeks and next pet/ct in September unless any sign of concern. Now on cymbalta for SE of letrozole.0
