Bone Mets Thread
Comments
-
Good to know Sunshine has a plan. It helps to have definite information regarding biopsy, scan results, etc.
In case no one mentions it and with so much going on to think about/remember, many of us had a 'flu like' syndrome for a couple days following the initial Zometa infusion. Acetaminophen took care of my discomfort. Don't be too worried if you feel under the weather after the first treatment (you're probably not getting COVID 19!)
Then, after a year of going every 4 weeks, we backed off to a quarterly schedule.
0 -
I've been on Xgeva since I started treatment in February of 2017. I had reached a point where my shot was every 3 mo (as I recall) and then I had an unfortunate bout of hypercalcemia in November 2018 (in the hospital for 5 days), and my onc ramped me back up to every 30 days for bone support. I have remained at every 30 days. I have no noticeable side effects at all from this shot.
0 -
hello everyone, I am new to this forum, I see a lot of good information exchange here.
Short story about me: I diagnosed with stage 4 breast cancer, Mets into spine around 8 months ago, actual treatment started 6 months ago, include zometa (bone strengthener) ibrance and letrozole. Few days after first zometa intake, my spine fractured, and I started radiation therapy for 10 sessions.
Despite these drugs, new mri shows cancer spreading to all thoracic spine and in CSF (Cerebrospinal fluid). My oncologist doctor does not give me any options for treatment, but I do need some ideas about what options are available for this sort of bone cancer. Based on the internet there is a test, lumbar puncture to detect cancer in spinal fluid.
What treatment is Available if LP confirms cancer entered to spinal fluid?It is a great help if someone with similar conditions can share experience here.
Thank you
Julie
0 -
Julia-beat-it...sorry you have to be here with this horrible disease, but there are many knowledgeable people here that can help you. Unfortunately I don't have any information for your exact question, but hopefully someone will be along to help you shortly. Remember, you're not alone.
0 -
Julia-beat-it — I have mets in my spine which were treated with external radiation. They quickly came back in different spots of same vertebrae. Have had a cervical fracture but it was from trauma not cancer. No zometa or cerebrospinal fluid experience. Hope you get some answers and relief soon. Best wishes.
j
0 -
By His Grace, how many sessions did you have on your spine? I'm to have just 3-5 on my spine and hip (palliative, they're calling it), then will have around 10 on my femur. I'm so sorry yours came back so quickly.
0 -
Sunshine 99 —I'm sorry you're going through this too.
15 daily on my acetabulum in Nov-Dec. March PET revealed new mets in L2, 3, and 4. 15 daily in March/April. RO called both of the treatments “curative," not meaning to cure my metastasis but to cure the spots being radiated.
The new iliac and spine mets in L2 and 4 found Friday, are not in the same places that were just radiated.
Have you had radiation before? This was my first experience.
j
0 -
Julie - I'm sorry you find yourself here but you are right, this is a great group with good info. I wish I had more info to give you. I'm not super familiar with mets to the CSF. I do know they can do a lumbar puncture (or LP) to the spine to test the fluid and see if the cancer is there and if so how much. There are chemotherapies that can be administered directly into the CSF, it's called intra-thecal administration. I don't know off the top of my head which ones can be given by that route or if they are specific for your tumor type but it would be worth asking your doctor about it for sure.
0 -
By His Grace, this will be my first time with radiation. The first cancer was treated with mastectomy, chemo, Tamox & Arimidex. I've just started the Arimidex again and will begin Ibrance once the radiation is finished. Do you hurt? Did the radiation help with the bone pain?
0 -
Sunshine99 — I never had chest radiation so I only know about it to my hip and back. Didn’t hurt, didn’t burn, took only minutes after the first set up session. Wasn’t uncomfortable, was on my back in the same position every time. They used a permanent marker covered by clear, round “band-aids” so the beams hit the same place every time. The worst part was not getting the marks wet. Showering was a challenge.
Pain — tough to say. Large hip met didn’t hurt, but the fracture and three biopsies did. That pain got better as it healed. Lumbar hurt. That pain got better with radiation, but new mets in different spots on the vertebrae appeared so fast I had only about two weeks of pain relief.
Where on your hip and spine are your mets? Your pain? Do you begin radiation soon?
I was scared silly and so relieved when it wasn’t awful. Had some nausea and diarrhea, not much and more during the first set of treatments that included the hip. Mild fatigue both times for a couple weeks after completed, but really think it was more me being lazy. 🙃
j
0 -
thanks a lot for your support, I really appreciate it
today I’ve done some other tests hopefully the results will be good and I see my oncologist in few days. Tired of tests and physically tired as well.
0 -
ByHisGrace, my mets are at L5 and the left ilium as well as the left femur. I've actually had pain in my hip since last September. My husband had noticed my energy level dropping before that. The pain keeps me awake at night, but Tylenol PM helps.
I'll start 3 sessions of radiation to the hip and spine today. After that, they'll radiate the femur. I'm a little nervous about the radiation, because this will be a first for me. I'm prepared for the possible fatigue and diarrhea, but I don't have any plans to be anywhere and my husband is driving me to my appointments.
I got 3 tattoos but I can't even tell where they are!
I have plenty of little spots and dots all over my body. Good luck finding them. haha0 -
Sunshine99 — I was nervous too, but it sounds like you already have all the set up process done. The actual radiation is a snap. If it goes like mine, it will take longer for you to get on and off the table than the actual radiation. While you’re on the table, you’ll hear a slight change in sounds which distinguishes the machine moving into position and the beam. My beam times were two segments of less than 20 seconds each and I felt nothing.
If your center runs as on schedule as mine, from the time your husband drops you at the front door until you get back in the car will be less than 20 minutes. After the first couple days and I learned the routine, I drove myself. You’re going to do well!
🌈
j
0 -
Sunshine, I am in total agreement with By His Grace! This becomes very routine once you get the hang of it, and my radiation "people" were so nice. It was a breeze.
0 -
Hi Sunshine,
Just chiming in to also let you know that radiation was pretty easy. Side effects vary, of course, depending on where you are zapped. I've had three separate treatments with varying success. The first was to my lower right lumbar spine to address severe sciatica that resulted from the tumours. I had very little, if any, after effects and the relief was very fast.
The second zap was to my hip as I have quite a bit of cancer, particularly in the right hip/pubic area. I found with that one that there was some significant immediate gynocological irritation. I felt it as soon as I got off the table and wondered if I would have trouble getting to the car! There was no way to avoid it as the beam passes through some areas that are pretty sensitive. However, that faded over a couple of days and while the response was not 100% it made a huge difference to my ability to walk again. My right hip was getting so bad!
The last zap was to my sacrum/low back to deal with increasing pain. In that case they were radiated me dead center and warned that I might have skin issues given that this is an area were the skin is very thin. I had that immediately after the treatment. It was kind of funny as I started to subconsciously scratch my lower back as I was leaving and the technician said stop... let me put some lotion on that. The other problem? I made the mistake of eating lunch prior to my afternoon appointment. BAD IDEA! Made it back to the office and thought... gee... I'm feeling nauseous. That became quickly much worse. Within about 15 minutes I advised my boss that I need to go home, made it as far as the lower parking garage in my building before I threw up (thankfully I had the presence of mind to grab a plastic bag before leaving my office). Apparently the beams caught my stomach. Note to self.. don't go back to work and don't eat before radiation! My back was tender and I did have some pain flare for a couple of days but again, that faded and the results were good.
I hope your sessions go well!
0 -
Sunshine99, I had 5 sessions of radiation to L5 last year. It wasn't too bad. I didn't have any diarrhea, only some inflammation in the radiated area which lasted for a few days. Since I was already taking Celebrex and Tramadol, I didn't need any other pain medications. At night I had to take Tylenol PM. Fatigue was tolerable. Good luck with your radiation sessions.
0 -
Hello all..I am new to this thread! I just wanted to ask those who had bone mets how it is going with treatment and mostly whether or not you had some progression right after starting treatment?
My situation is I had a CT scan on 4/1/20 and it showed one lesion on my right hip, and possibly a lesion in spine. Also, nodules in my pleura and suspicious lymph nodes in chest. (this is the first time I find out that I am Stage IV after biopsy soon after)
I just had a PET scan and this now shows that the spot on the hip got worse, there's a new spot on the hip socket, there's a different new spot in another vertebra. So in about one month there has been this much change. The change was mostly in the bones and the PET scan just confirmed that the suspicious chest lymph nodes were most likely cancer.
Have you all had changes happen this fast? I feel like I am realizing this reality that we did not catch this fast enough and now it is really spreading fast because of how many locations it is in? Maybe?
It's ER+PR+HER2- Grade 2. I just started treatment a week and a half ago and my Pet Scan was 2 days ago. I got Zoladex then Ibrance and Faslodex. Could the treatment be causing a "flare" which will then get better? Have any of you heard that before?
I am really worried if it seems like it is spreading quickly.
Thanks for your feedback. It is really helpful reading back over your experiences. ❤
0 -
I was warned about possible tumor flare when they started the zoladex and when Ibrance was started, which was a month apart for me. I was put through a full spine MRI in advance of the zoladex injection to ensure there wasn't anything close to impinging on the spinal cord, and that was after I had gone through chest MRI, nuclear bone scan and pelvic CT in the pre-surgery workup (when they found the mets). The zoladex did something, just not where they were looking - that is what caused the (suspected)sacral fracture.
I was under the impression that the PET or nuclear bone scan was a bit more sensitive than the CT, so it may seem like progression when it isn't necessarily. Someone else may want to chip in shortly with a more scientific answer!
0 -
Sunshine99 —- forgive me, please, I can't remember ... was your first radiation today?
🌈
j
0 -
laastra and JavaJava - just before Christmas I had a melanoma which didn’t show on a PET scan taken two weeks before. The doc explained to me smallest a CT picks up is 1.0 cm; PET picks up 0.5 cm. My melanoma was 0.4 cm.
I had multiple new bone mets show on CTs taken Friday which did not show on scans done six weeks earlier.
laastra - Hope this helps answer a couple of your questions. I’m sorry you’re going through this. It tough to sort so much information and understand what’s happening to your body. People have spent their whole lives learning the medicine and science we are expected to digest in a couple weeks and make life&death decisions.
🌈
j
0 -
Laastra
It’s too early to make a judgment call as to whether your treatments are working. Hormone treatments take about three months before you can see a response. This includes Ibrance. And yes, you can see progression in bone fairly quickly.
In my case, I had quite a bit of progression at the beginning but there are extenuating circumstances. I was put on Taxol to start, only because I had a lung full of fluid. Had I been bone only, my MO would have started with a hormone treatment. Once I made the switch he put me on Arimidex. At three months there were indications that I was progressing but we held steady - bones can be tricky to be certain of what’s going on. At six months it was clear there was a lot of progression but I had been on Arimidex as adjuvant therapy for several years so it’s probably not a surprise that it failed. I started Faslodex in early 2018 and have been stable since.
All to say, a bit of progression in the bones is not something to panic over until you give the treatment time to kick in. I hope this is helpful. PM me if you have questions.
0 -
Laastra, welcome.....this is a wonderful place for support and experience. We're sorry that you have to be here but glad to welcome you among us, nonetheless. You're not far from me, as I'm in the Northern Neck of VA. I agree with some others: different test pick up different things, so these new areas may not be the quick progression you fear. I agree as well with Sadie, that bone mets are difficult to accurately observe and measure (my onc has told me that for years) and that treatment takes a while to kick in and to create an observable response. In any case, you're wise to be paying attention and asking questions. This diagnosis is most overwhelming at the very beginning, and you'll begin to settle in as better understanding develops. I, for one, am doing great after 3 1/2 years of bone mets, and some on the site have many, many years as Stage IV. Denny is a particular beacon of hope! Keep reading and learning and asking questions-
0 -
By His Grace, yes, my first radiation treatment was yesterday. The hardest part was being on the table for 45 minutes with my arms extended above my head. It got really uncomfortable by the end. I think I'll see if I can move my arms a bit between the sessions to my spine and my hip. They came in an made some adjustments in the middle of the entire session. They said they were getting images and the doctor was looking at them before the radiation zaps.
I felt like I was in some kind of Star Wars or Star Trek movie with these big machines circling me. Very strange. My back was really sore after the treatment, but it actually felt better than it has in a long time while trying to sleep.
Our poor dog was really sick last night - we actually didn't know if he was going to make it through the night. My husband slept in the den with him after he cleaned up all his messes. I kept an eye on them through the security camera during the night. He seemed better this morning and was romping around the house when my husband was getting ready to take him for a walk. He's a twelve year old Airedale Terrier and a total goofball.
Sadie, thanks for the heads up about the possible nausea, depending upon where they radiate. I brought some plastic bags, but didn't need them, thankfully. They'll stay in the car for the duration, I think.
I saw the radiation report, but couldn't make heads or tails out of it. except that they radiated L4 and L5 and the ilium. What I found interesting, like in By His Grace's report, is that the word "Curative" was used, not palliative. I'll see the radiation oncologist, so I'll ask him about that.
Wishing you and all my ladies a blessed day!
0 -
Hi Ladies, I came to this thread some time ago when my mom's cancer came back. It is with much sadness that I inform you, tonight she got her wings and is with the angels now. When we first found her recurrence the cancer had spread to every bone in her body. Yet she fought for just shy of three and a half years with good quality of life. Her first bout with cancer was around fifteen years ago. She has finally gotten rid of cancer, it never spread to her soul.
I hope this message of her long fight gives you strength like so many in this thread gave me when I first came here. She was very religious, so I ask you to pray for her that she is at peace in heaven. Thank you for listening
0 -
teejay92, what a lovely note. Thank you for letting us know. I'm so sorry for your loss.
0 -
Oh, teejay, I'm so very, very sorry that you have lost your precious mom. She was fortunate to have had such a loving daughter who did all that you could to help her, and you were fortunate to have had her as a loving mother as long as you did. I'm sending hugs to Egypt. I wish that I could give them in person.
0 -
teejay92...I'm so very sorry for your loss. My thoughts and prayers are with your mom, you and your family.
0 -
teejay92 — I wish you strength as you learn to live without your Mom. I hope soon when you think of her a smile will appear on your face instead of a tear.
🌈
0 -
teejay, I, too, am sorry for your loss. I like that the cancer never spread to her soul. What a beautiful tribute. I'd like that said of me. (I added that to my bio.) Thank you for sharing that that thought with us. I lost my mom to Alzheimer's Disease a few years ago. Mother's Day is a bit sad for me. I miss her.
0 -
This is an interesting discovery. Although it was done with someone who is HER2+, I think about our exceptional responders like Karen (exbrngal) and whether this can be in the future for all of u
0
