Bone Mets Thread
Comments
-
Hi
I live in Washington State but I am in TX right now ad just met with MD Anderson. A new issue has thrown us a curve ball. I intend to confirm this but it appears our original diagnosis of mets ER+PR+ HER- is not the same result my bone marrow biopsy provided. Has anyone seen or encountered a flip of tumor behaviors from ER+PR+HER- to TNBC?
tigre
0 -
El_Tigre, I haven't experienced a change in tumor behavior, but quite honestly, it's something that I've been concerned about. I had a biopsy after my stage V diagnosis, but the biopsy was fruitless. They didn't get a tissue sample, just blood. My oncologist assumes a recurrence and won't consider another biopsy until we get result from first PET scan after Kisquali/Letrozole.
I would also be really interested in hearing about your MD Anderson experience. I had such a hard time working with the appointment setters (I got a different story EVERY time I spoke with someone), it became exhausting so I decided to move in another direction.
0 -
el_tigre - Nicole in the liver mets thread was a flipper to TNBC, as was Denny (the 20 yr lady) - i think she's flipped a few times in fact. Are they saying you flipped receptors and stayed bone only? Because both of the above ladies are liver involved, Im not sure Ive ever seen flipping while staying in the same location, especially bone.
0 -
mamadetres - I had called and moved the apt around 3 times to try and accommodate flight costs etc. I was disappointed my state did not allow MD Anderson to do virtual visits so I am not sure how we will proceed with them in the future. The waiting on hold was almost an hour each time.
We met a number of people at the Woodlands campus and they appeared to be very educated. We left feeling hopeful with the treatments they offered and the clinical trials they said I would potentially be a candidate for.
Our main ONC at Oregon Health and Science University said we didn't qualify for any clinical trials due to my T cell leukemia (it's a non aggressive type that treatment is not recommended for yet). We had a bone marrow biopsy since then and it showed trace amounts of this leukemia so it should not block us from trials. So hearing we may be able to partake in some trials even with this blood issue was great news.
We were taken back 5 min after we left with a phone call from the ONC we met reporting that a piece of our medical records pointed to my tumor changing in profile. The bad news was not really MD's fault but I felt that this info was there to be reviewed when we were speaking with them in our apt. We can still ask questions over phone or messaging but not being able to ask in person on this new info and see their reaction or demeanor was a miss with us.
We flew from Portland OR to TX and I feel it was worth it, even with their recommendation of staying 3-5 days after your apt incase they need to order tests or anything. We do not have to any of that because we tried to get as much "housekeeping" done prior.
I may have a diff opinion if we were not able to save money by staying with a friend down here.
all in all I'd give them a 9/10
tigre
0 -
emac877- my calcium has been elevated since last year, last time was 10.7, hyperthyroid hormones are normal. This past few months I have a deep dull aching pain in my right lower leg, I also feel swelling and fullness deep in my leg but my leg looks normal. Pain comes and go but increases pain, X-rays and US are normal, I’m about to have mri (hopefully) this month. It’s scaring me…what kind of pain did you have? Any advice will be appreciated. I apologize if this is not the proper venue for my situation
0 -
Tigre,
Thanks so much for sharing your experience. I'm in California and like Oregon, CA does not allow for virtual visits.
A 9/10 sounds like a pretty good evaluation...all things considered.
0 -
mama, I'm in California, and have had several virtual visits. I've met with my PCP, the ortho oncologist and my MO. Who is telling you that virtual visits are not allowed? Is it just your provider?
Carol
0 -
sunshine99 - I was told that my state of WA laws did not allow a TX medical facility to have virtual visits. However I can with OR doctors. It's weird and I ask everytime in case the law changed or someone misinterrpreted it.
0 -
Hi Nory - sorry to hear your mom is with us in this journey. Be sure to check her kidney function and creatinine levels in her blood work along with the calcium levels. If the calcium levels are going high along with creatinine, and the kidney function is getting lower, she is definitely experiencing hypercalcemia. I was hospitalized this past February from my kidneys failing from hypercalcemia. After a few days of saline infusions, my kidney function started recovering. Kidneys are now up to 58% but had gone down to 5% when hospitalized. It was very scary.
I was having muscle twitches and cognitive impairment (couldn’t remember appointments, got dates confused, stuff like that). To give you a frame of reference, my calcium went up to 14.6, eGFR (kidneys) down to 5, bun was 85 and creatinine 7.20. Thankfully my numbers are all back in the normal range now. Hoping and praying for your mom and all the rest of us travelers. ♥️ XO
0 -
Interesting discussion about hypercalcemia. That was one of the things that kind of spiked just before my Stage IV with bone mets diagnosis. MO took me off all calcium supplements - no multivitamin anymore, either.
Carol
0 -
I'm just wondering at what stage did people get radiation? im still taking over the counter medication which is controlling the pain in my hip but I am taking it almost every day the radiation oncologist said come back when ever I feel I need to, he said he would give me 5 session when I came back. Would there be any advantage in waiting or should I do it now, he also said it lasts about 2 years but I can have it again if I need it.
0 -
Ah i got that too... "we can radiate more if you want". I had no idea what that meant at the time so I just said no and went with the five they gave me. I dont know if that meant my recovery (since radiation continues to work for quite some time, 10-12 weeks after the main event) was slower but it did the trick in the end.
Is your pain getting worse? Or are you just concerned about taking the daily painkillers? Ive had lesions radiated that weren't causing any pain, but to control growth. But I think its a personal issue, if its bothering you enough that you would rather it was zapped, then perhaps its worth a conversation. Did you get it done recently?
0 -
I got a referral to a radiation oncologist from my oncologist because I thought the pain was getting worse but as soon as I got the referral it stopped go figer , but it's back again if it makes no difference when you have it I might just go back and get it done.
0 -
Hi All, iI have been off the site for awhile probably trying to live without thinking about c every minute. I recovered from femur rod surgery and still walk with a limp but I was walking and doing things. Just when I planned a few trips for August and Sept my other side has the same pain just started up. Ok so I’m worried as hell …. I need to see those comments from long time survivors. I was on my week off of ibrance and about 8 days before falodex injections and my ibrance delivery was Kanoun 4 days late and then the pain started. My dr appt is a Monday and my injections. I too was told my Mets had shrunk but one of course the one on my side pelvic where I have the pain. Radiologist wanted to do radiation then onc dr said it could just be from me using it so much because of my other side with surgery, etc. I had no pain then. Ok this was Dec 2021 and that was also my last scan . I know I am long overdue my tumor markers were 45 down from 75 when I started. Monday I should get my next tumor market results. I was told they do them every other month. So when in despair I come back to all of you
Trying to b
PostivetoStrong
0 -
Hi sunnidays. I have had numerous radiation treatments for issues related to bone mets. It is not always pain related, some have been to deal with nerve impingement that caused numbness and tingling. Early on I had treatment for pain which included sciatica in my right leg. I could barely stand in the morning with that one.
Ultimately, it’s about determining if it’s impacting your QOL. If it is, you shouldn’t hesitate to have it treated. You do have to keep in mind that there are normal aches and pains to consider. In the case of my hip, the radiation got rid of the sciatica but I still have some pain, probably a combination of osteoarthritis and bone mets. Not everything is cancer. 😊
0 -
for radiation decisions it was 1, is it causing pain beyond tolerable by OTC pain meds 2, is it heavy in mets and likely to fracture and 3, is the place a weight bearing area.
I had spine = reason immense pain
I had right pelvis (femoral head) = pain and high risk of fracture due to area supports my wieght.
Both radiation were referrals and I have an open referral with my radiation ONC in case there are others areas we discuss that ight need zaps.
tigre
0 -
I had radiation to L2 and S2. They were both large mets, both causing a lot of pain, and prone to fracture. L2 actually ended up fracturing during radiation. There was so much cancer in that vertebrae that when the rads started working, the vertebrae just collapsed. It was awful, I can’t even describe, ended up admitted to the hospital for pain management. So I would definitely recommend having rads to prevent a fracture.
0 -
Carol,
I was told by MD Anderson, that because I was in CA, I was not able to/allowed to have a 2nd opinion via a virtual visit. It had to be in-person. I am able to have virtual visits with my health care providers in CA.
0 -
mamadetres, that makes sense. I didn't realize you were talking about a second opinion.
Carol
0 -
I am stage 3 (left side) stage 1 (right side) I had dmx, chemo, rads, and arimidex & Verzenio. Just had a pet scan and left side didn’t get clear margins after cancer. So PET scan showed cancer may still be there at chest/chest wall. Im still taking my meds, but have a referral to work with an integrative care doc also. Im juicing at least 40 oz of carrot juice a day and doing SQ1 protocol as much as possible, but minus supplements until I speak to someone who knows what will complement my meds.
0 -
Hi Merkmurf. I’m not sure if you realized but you are posting on a thread four stage IV members only related to bone metastasis.
0 -
Merkmurf, there is a Stage 3 forum where you can post. I think you may find others in your similar situation. I'm sorry about your diagnosis. Cancer sucks, no matter which stage it is.
0 -
Hi, everyone,
I had a CT scan yesterday that showed probable bone mets in my spine.
IMPRESSION:
Numerous increasing sclerotic osseous metastases scattered throughout primarily the thoracic and lumbar spine. There are also foci noted in the pelvis and sternum. These are new since prior exam in August 2021.
There is a faint 8 mm hypodensity within the right hepatic lobe. This is not definitively represent metastatic disease. MRI of the abdomen could be obtained to further evaluate if clinically indicated. Otherwise, attention on follow-up imaging is recommended.
Similarly there is a well-circumscribed hypodensity within the anterior aspect of the spleen that is new from prior exam. This could represent a splenic cyst however metastatic disease is not excluded.Needless to say, I'm floored. I have MRI's scheduled for 9/2 and am waiting to schedule a whole body scan, and I have appointments with two oncologists (I was in the Monarch E clinical trial with verzenio, so an appointment with my trial oncologist and then an oncologist at my treating oncologist's ofifce - he left the practice.)
But I'd love any positive words of encouragement. I'm not ready for this...
Thanks,
Linda
0 -
So sorry Linda. Praying for you
0 -
Linda, I’m sorry that you’re dealing with this. I know it is very worrisome, but I hope you can delay that a bit until you get some feedback from your MO visits. (Easier said than done, I know)
Many times, things that seem insurmountable in the beginning can turn out OK. I don’t say this to minimize your concern (I would be pretty discouraged if my bone mets progressed). I’m just speaking from my experience when a CT found my bone lesion after I had two chemo infusions. My chemo was changed and they did radiation to my spine. I have not had progression for two years, and I think that’s a good sign
0 -
Sunnidays
The same happens to me, I get random pains. I get an MRI scheduled then it goes away so I cancel and it it another pain pops up then goes away. Maybe it’s a lobular thing??
0 -
Linda2119 - I'm sorry to hear about your progression. The MBC diagnosis is new for you, correct? I'm sorry you find yourself here. I can't speak to possible liver or spleen involvement but I have mets in my thoracic and lumbar spine too. Many of us here do. You will find a safe space here to vent and ask questions. I think the most encouraging thing for me when I first started after my MBC diagnosis was knowing I had found others struggling with some of the same things I did and they understood. I've had MBC to the bone for almost 3 years now and am still considered by my doctors to be stable. Sending you warm wishes as you go through your scans the next few weeks. May your doctors find a medication regimen that works well and stabilizes things for you too.
0 -
Linda, I had 2 spots on my liver back in 2015 that they biopsied and found it was not mets. Later after I was DX w/ MBC I had progression to the liver. I have not experienced any pains with the liver mets or symptoms. I only have pains and aches with my bone mets that have been taken care of with radiation.
I am glad you have apts with 2 ONCs. I find more opinions on treatments the better. I have been on Verzenio before (3 mos with breaks). I had some SE but it was tolerable.
tigre
0 -
Did you have that tooth extraction you spoke of in Feb 2022? Did your MO hold the Zometa infusion for awhile before the extraction? If it was held, how long were you told to wait before proceeding with the extraction? Did your MO communicate directly with your dentist about this issue? Did the extraction heal without problem?
Also, did you switch from Fulvestrant to Elascestrant? Did you ask to make the switch? Any hesitancy by your MO for you to make the switch?
0 -
Hello,
Is anyone on Enhertu with bone met and knows (via imaging) Enhertu effectiveness (work or not work) against bone met?
Thanks.
0
