Bone Mets Thread
Comments
-
lgp1111, please don’t feel that you’re required to answer questions posed by other members. The forum is here to offer you support. It’s your choice how much or how little you choose to interact and no one will judge you for it.
0 -
Hi,
I haven't been on here in quite some time. Mostly out of denial. In hindsight, I don't know how I could have been in denial after a mastectomy and daily tamoxifen.
Cliff notes version of my history - once I got diagnosed, my husband got on several dating websites and has since moved out. I have 2 adult sons, but they struggle with my diagnosis.
Since I was diagnosed in 2016, my yearly PET scans have been clear. However, Oct of last year, I had a slight fall and hurt my tailbone. The next PET (feb 2022) showed "Subtle slightly increasing mild FDG avidity in the right mid sacrum which could represent degenerative uptake versus early developing osseous metastasis. Recommend clinical correlation and if clinically indicated, consider additional MRI for better assessment." And then in March I had the MRI. The results showed " No osseous features to suggest metastatic disease. Signal abnormality of the sacrum which may correspond to the PET finding is more linear and likely related to stress response or trauma."
My MO had me do an additional PET scan as a follow up and now the results are "1. The previously seen uptake in the right mid sacrum demonstrate increasing FDG avidity, worrisome for osseous metastasis. The previously seen uptake in the right mid sacrum demonstrate increasing FDG avidity with current SUV max of 4.6, previously 3.2
2. Intense uptake noted along the lower vaginal region. Recommend clinical correlation to exclude pathologic lesion."
My MO has put in a referral to an interventional radiologist - said I should hear by Thursday if they want to biopsy or what they recommend. And she said it is up to me to contact a GYNO for an exam.
Is that a normal response for the MO? Is 4.6 from 3.2 a big jump??
This seems like a very friendly,loving forum. Any advice would be appreciated.
0 -
Hi to all,
I am on Ribociclib and Letrozole, and my joint pain from the Letrozole seems to have gotten worse now I seem to have digestive issues and pain in my breastbone.
I am wondering if anyone else has had this issues.
0 -
Hi sunnidays
I have been on Fulvestrant since May and ribociclib since mid-August. The initial 600 mg dose had to be reduced to 400 mg because of severe intestinal cramping and bloating so severe that most of my pants didn't fit. I still had GI issues on 400 mg, but have just finished my 3rd cycle of that and things are improving.
Don't know if this helps.
Eleanora
0 -
Here’s the latest going on since I got bone and ct scans on the 19th. The ct scan was good but the bone scan showed something on my femur so the oncologist referred me to a radiologist. I saw the radiologist today and it looks like I’m going to get a radiation treatment to that area. He pulled up the scans for me to see. I go early next week for I guess you’d call it mapping of the area to be radiated. I’ll be scheduled for the radiation at a later date.
It’s the first time I’ll get radiation since I had it in 2011 on my breast. I know so many of you have had different areas zapped and I am wondering how effective it will be. I really didn’t have many questions. Is there anything I should be sure to ask when I go in for the mapping? I feel kind of sad, even tho I know iit is a good thing that only one small area needs radiated.
0 -
DivineMrsM - Sorry to hear of your progression. I had a pretty broad radiation to my chest wall back in 2010 when going through treatment for stage 2B. I had to go through radiation again in February through March of 2020 following 12 weeks of Taxol chemo in October through December 2019 for mets to a lymph node and my clavicle. The clavicle met was over 7 cm. The radiation was higher dose and they went at it with curative intent thinking that this could be the chance to keep it from going anywhere else. I couldn’t do the SBRT radiation because my cancer was too large but it may be an option for you. My radiation was very successful. My next scan following that radiation was in July 2020 and I was NEAD and have so far thankfully, stayed NEAD
0 -
Divine, I had a new spot appear mid-spine and a mound of smoldering mets on one hip that got SBRT after 3.5 years of I-Femara, because the areas were not near vital organs they could double dose and it took just three sessions. Scans were all clear for 1.5 years afterwards so it was very worthwhile. Further progression was more extensive so rads not an option but am now doing well after 1.5 years on I-Faslodex...
0 -
Divine- I had a progression in R hip and did radiation of 5 zaps and it killed that cancer- Tms went back down and remained on Xeloda for another year. A few other spots showed up 7 months later and had a few more zaps- also kept me on Xeloda for another 6 months- got enough time for Enhertu to be approved for Her 2 low-
They do mapping with CT and add a few tiny tattoos to line you up.
0 -
Divine
I had 5 sessions of SBRT to the right pelvis and a skull bone this past June. The pelvis radiation was incredibly easy. They used markers with clear adhesive dots to protect them when I showered. No tattoos, which was a positive for me. (I don't want any more permanent marks from this disease than I already have.) Afterwards I had a very minor ache in the groin area that wasn't even worth taking Tylenol. My scans in October still showed increased tracer uptake because of the cancer destruction, but my RO was very reassuring that it looked exactly the way it should at that point. As others have commented, this kills the cancer, which in my opinion is a miracle.
You will be fine.
Eleanora
0 -
My name is Peoy. 59. Singapore Chinese. (I tried but can't figure the profile part so bear with me)
Woke up one morning in Aug with swollen arm. Thought lymphedema so compression sleeve n exercise. 2 wks later, 2 lumps - collarbone n auxillary. Alerted MO. CT n bone scans, biopsy (auxillary).
My cancer cells have morphed: ER80%+ to 5%+. PR+ to -. Her2+ remained 3+. CT showed T12 suspicious. Bone scan showed osteoblastic activty (multifocal) from T8 to pelvis - 8 bone mets (T12 not mentioned). CA 15.3 n CA 125 within range. CEA high at 12.3.
Questions
(1) today started same combo as 2017: taxol (4-6 cycle) + Herceptin + Perjeta. Xgeva mthly. Anybody here did same combo twice? How's the response?
(2) why CT n Bone scans differ so much? Osteoblastic = Sclerotic bone mets? Anyone with just sclerotic bone mets? How's your experience?
(3) MO said is common not to have pain in bone mets. Currently, no pain from bone mets, will have pain later?
If my write-up is insensitive, I apologise.
Appreciate inputs. Thanks
0 -
Divine,
I had five doses of radiation to my thoracic spine early in my treatment process. I didn't know what to expect and was surprised by how painful the radiation was hours later. It was over a weekend and I was afraid to take any painkillers in case it would interfere with the process. So I wish I had asked what I could take in case I had pain. The radiation seemed to be very effective at killing the cancer cells that were in that region. Hope yours goes well.
0 -
Divine, I have had radiation to the right hip/femur/sitting bone and the side effects didn't hit me until my 10 zaps were done. My side effects were fatigue, loss of pubic hair on that side (welcomed SE) and irritated lower colon that resolved within a few weeks They will go over any SE that may occur and alot of people skate through it. What I was left with was less pain in that area and little dot tattoos from the mapping session.
I hope it all goes well and they play your favorite music during the sessions!
0 -
Hi Peoy
I am sorry to hear about your bones mets.
I had little pain before they discovered my bone mets and later on I had increased pain from them due to the treatment not working. I didn't start out on chemo but on oral treatment that was unsuccessful. Since you are doing chemo first I hope your bone pain never arises. I have a friend that has done taxol twice and her second time around she had a response and it helped knock back her cancer. She has since gone into a clinical trial. I am not sure what kind of side effects she had if any. I know it can cause neuropathy in some.
As for the types listed Osteoblastic and Sclerotic I am unsure sure if they are both bad or only one of them. I am sure someone on this board knows the answer and if not your MO should.
I know CT scan show soft tissues masses/lesions and Bone scans only bone damage that lights up from trauma or cancer cells.
Take care and let us know how you are doing,
tigre
0 -
Divine - its always taken good care of my cancer issues and they've zapped all the mets at this point. The only thing I would ask about is if you will get some radiation tanning. I didnt have a problem with the sacral rads, but this last shot at L3/4 and now I have a perma square branded into my back and its kinda weird. Weird enough that I had to dig out a higher backed swimsuit to go to the pool today. So if that may bother you, best ask.
Peoy - we are sorry you have had to join us, but the HER2+ aspect is a good thing in your favor
Bone mets don't always hurt, only one of my initial ones did, the rest haven't. I don't take any painkillers. The issue comes if a tumor grows and interfers with nerve passages, or a bone fractures from a tumor growing in it. If you havent had pain before your MBC was caught thats a good place to be in, as now regular scanning will hopefully catch anything before it gets too big.As for blastic/sclerotic - treated/resolved mets typically show up as sclerotic, so the longer you go down this path the more mixed your scans will appear. Lytic are the bone holes, and are a bit more worrysome. I had that in my sacrum, but blastic ones in my vertebrae.
0 -
Hi Peoy,
You are correct that osteoblastic and sclerotic mets are the same thing. I am one of those people who only has sclerotic mets. I believe it's a function of my more indolent, slow growing disease. The bones have time to mount a defence, trying to “heal" by building a scab over the cancer.
As to scans, yes, they can often differ considerably. In my case bone scans are almost useless. Again, it's related to my slow growing disease which doesn't pick up the radioactive marker. As a result my bone scans could be from anyone but the CT scans show bone mets all over - ribs, spine, skull, hips, clavicles… I suspect that PET wouldn't work well for me either which is why my MO has steered clear of them.
Finally, with regards to pain, it's difficult to predict. Many people have zero issues with their bone mets but, while I haven't had severe pain, I've had my fair share of issues, predominately from the mets in my spine and base of the skull. Thankfully radiation (this aimed at your question as well Divine) has been very successful in eliminating my pain and symptoms so I there is help if you need it down the road.
Divine, I've had multiple zaps which have caused few side effects and minimal pain. I have consistently recovered quickly from the treatments and the results have been very positive. Radiation has helped me with severe sciatica, unrelenting headaches, hip pain and, more recently, nerve damage causing numbness and pain in my right shoulder/arm. I think my RO is a magician!
Waving hello to everyone. I find myself checking into BCO less these days but do pop in now and then. 😊
0 -
https://www.nobelprize.org/prizes/chemistry/2022/p...
Dont know where else to put this, but the cure or life long controle is definitely on the way.
Now, maybe not for any of us but who knows. within the next 10 years it really will become a chronic condition requiring lifelong treatment but breast cancer won't be a terminal disease or so I'd like to think. I love that it's a woman who is making some of the breakthroughs in this area.
0 -
Thank you all so much for the replies about radiation. To hear all the different scenarios and good results is reassuring and helpful, and I greatly appreciate your responses! ♥️
0 -
Thank you el_tigre. Sondraf n Sadisservant. Thanks for your insightful thoughts n experience.
Back in 2017, I was bald. So people asked, I explained (tiring). Some even dispensed remedies. Really? I know they meant well but I have serious ailment. Unless they are doctors or fellow sufferers, i won't take their advice.
Now, I only tell my immediate family, husband n 2 boys (31/24). I'm using cold cap so hopefully not too much hair loss.
Neuropathy - back in 2017, slight neuropathy n resolved when I stopped chemo. But my 10 finger nails are black. It took some months to outgrow them.
0 -
sondra and sadiesservant, between the two of you are mentioned osteoblastic, blastic, sclerotic and lytic bone mets. Please help me get the terminology straight. I take it that lytic bone mets are when the bone starts breaking down/getting holes. On the other hand, osteoblastic bone mean the bone is trying to repair itself? I am thinking this is good but not sure if it can also be bad, some confusion on my part. And then I wanted to clarify that blastic and sclerotic bone is the same as osteoblastic? Hoping either of you could shed more light on the subject. Thanks!
0 -
sondra & sadiesservant - when you say zap, what does it mean and what does it do, is it the same as conventional radiation? My radiologist recommended 1 conventional for palliative care, if I need it.
0 -
In addition to the initial radiation to the breast 4.5 years ago, I've had traditional radiation to the hip, sacrum, and femur. The hip-sacrum radiation really helped the initial bone pain. I do think that I experience some tightness in the hip joint as a result. However, the femur radiation has caused a lot of tightness/weakness that has affected my movement. I can't get on the floor with my kids and kneel down comfortably. I've tried PT but haven't been able to go regularly enough for it to help. I think because my movements are restricted my muscles are getting weaker, so I need to get back to PT.
I really feel well cared for by my radiation oncologist, and generally the experience has been great. It's been very effective so far at reducing/ending activity of mets. I would continue to use it, if necessary.
0 -
Hi Silvia - sorry your husband moved out but thinking you are honestly better off without him (others may disagree - but really?!)....your MO sounds reasonable and I hope by now you have talked to a radiation onc plus made an appointment with your gynecologist- you have to get that spot checked out to rule out anything bad. A jump like you had in SUV uptake could simply be from inflammation. My last PET scan showed 7.5 SUV in my esophagus that turned out to be from GERD and not cancer....my insurance won’t allow PET scans now that I’m stage IV bone mets. Keep us posted on your progress. HUGS to you
0 -
I find all the comments about radiation to treat bone mets interesting. I have multiple bone mets, that have increased slightly over 3 years, but my MO has never mentioned radiation treatments. I've asked about tumor markers twice and was told not needed as my tumors are discrete and can be followed adequately by scans. I then developed a subtle, "indiscrete" liver change in Jan of this year and my MO choose to let it go, except for scans, until it grew to 1.0 cm so it could be biopsied. She wanted to do genetic testing which identified an ESR1 mutation. I then learned from reading that a liquid biopsy to identify mutations could have been done last Jan, or even sooner, before there was evidence of progression, to guide a treatment change. I've never had a PET scan. My MO says to trust her. I wonder if my age (soon 74) is a factor in treatment and diagnostic decisions that are being made.
July 2019 Verzenio plus Letrozol (did not progress, but stopped d/t SE) > Oct 2021 Ibrance plus Letrozol (progressed) > Sept 2022 Everolimus plus Fulvestrant.
I tried to update my profile. Too confusing. Hope this feature gets fixed.
Wendy
0 -
Weniwe- i was not offered radiation to bones for extensive progression, only when everything was controlled except a small area in my hip. They also use it for bone pain.
The ESR1 mutation means an AI may no longer work- but, fulvestrant (SERD) should.
I hope the Everolimus is working well for you! You are not that old- so I don't think that should come into it.
0 -
Hi again,
Thanks for the reply!! I agree, I am better off without him - I am just seriously struggling going through this alone. Reading all your posts help.
I did see a gyno - who found nothing - thank goodness. Frustrating - but a relief. The radiology interventionist had me have a bone biopsy. I'm still waiting for those results and subsequent treatment.
I will come back here and post once I hear.
0 -
Silviah - real quick comment - when you get results from the biopsy, be sure to ask if Her2 Low was positive. I so, you have some more treatment options available. My biopsy is so old they may not have known to test for it but yours should be. Good luck and hugs
0 -
Question: What is a liquid biopsy?
. My Oncologist has never mentioned that to me. She treats strictly on the CA27-29 marker. All of my blood work otherwise has been perfect. Now she wants to switch to Fulvesterant and Ibrance, after 2.5 years on Femara. Is she looking into everything she should be here? CT scans show mostly blastic lesions with only modest progression in the left sacrum. Is there more individualized treatment that I should be looking for? Thanks for any input
0 -
gigil,
Here's a recent article about liquid biospy.
https://www.healio.com/news/hematology-oncology/20...
And I think this next article might apply to your situation:
https://www.practiceupdate.com/content/switch-to-f...
Based on my reading, liquid biopsies can find mutations early, when a biopsy from a solid tumor is not yet possible. Also, as I read the second article, it's about the possible benefit of switching treatment to Fulvestrant and Ibrance prior to clinical progression.
Wendy
0 -
Thank Wendy. I will dig into these. I appreciate it!
0 -
hi everyone! I’m trying to learn to navigate the site again. I had my initial breast cancer diagnosis in 2015 and haven’t been on much since treatment ended. I was just diagnosed with metastasis to my spine. I haven’t even seen my oncologist yet. It was confirmed with the CT, and next I will go for a PET scan. I have no idea what my treatment plan will look like, or the degree of involvement.
0
