Bone Mets Thread
Comments
-
kbl I remember you mentioning the Facebook page and I found it awhile back. Thanks for that.
1 -
hi friends - it's the friendly troll that lives under the bridge, quietly checking in periodically and reading/absorbing the latest shares. it's comforting to see familiar names in the discussions i follow, particularly @amontro - i truly would like an update as to how you are faring with your onj. what brings me to the board today is a question: does anyone in the Los Angeles area have or know of a dentist who has experience with our issues? i've been dragging my feet on getting started with zometa, and have spent the last 8 months getting a compression/burst fracture in my L1 sorted out. so my oncologist says it's time to get that drip going and i need a dentist now who i hopefully can trust going forward. btw @amontro am i remembering correctly that you may have mentioned you would have never started with the zometa if given the chance? i could be recalling incorrectly. at any rate, i'll probably post this same query on another relevant forum and hope so much i might get a referral.
0 -
@divinemrsm how are you doing with your pain and rads? I had 2 zaps to T11 at UPMC Magee in 2020. They put me in a tight cocoon of plastic and sucked out all the air to keep me from moving during the radiation. It takes longer for the setup than anything. The rads were very quick. I had very few side effects other than the normal radiation fatigue. I’m hoping you’re having minimal issues as well.
0 -
cyathea, thanks for asking about me. I didn’t realize you go to UPMC Magee! I go to AGH. Pittsburgh offers excellent medical care, and I’m grateful for it. Here’s what’s been going on:
This is a positive post, but I’m gonna start by saying “pain is a bitch”. Taking a small amount of stronger meds for the pain I was having in my back made ALL the difference. The radiologist prescribed dexamethadose, one 4 mg pill twice a day. The pharmacist said it was a strong steroid. I have a sensitivity to medicine, so I only take a half a pill in the morning, 2 mg, and it’s all I need to alleviated the pain. But what a difference from just taking Tylenol. And it gave me energy I hadn’t had before. The pain was causing me to fear the cancer was taking over everything, which caused depression, I wasn’t physically able to do much, and it was like a downward spiral.
Then I got a call to get the radiation started, and since the steroid was working, I drove myself to Pittsburgh for two sessions last week. I have three more sessions. I have a customized vac-lock bag that was fitted around me which I lie in each time. It goes smoothly.
But….then dh was having trouble breathing one day this week, I got him to the ER and he had Covid. They gave him Paxlovid and he’s pretty much okay now. I tried my best to isolate from him, but ended up at the ER a few days later, diagnosis: Covid; now on Paxlovid. Geezzze! But I am doing okay.It’s really odd, because I do not know if the pain I was having in my back was a precursor to Covid, or caused by the mets, or exacerbated by the radiation, or a combination of these factors. I didn’t think I had Covid, just a cough from the thoracic rads, a possible side effect. But then I took my temp and had a fever. It surprises me that the Paxlovid is helping me feel better. I’m breathing better than I have in a couple weeks. Right now I’m in no pain so even tho I feel slightly under the weather, I’m pretty content.
3 -
Hello divinemrsm and all on this thread…I’ve not logged in for awhile. Been recovering past 8 months from Affinitor causing lung toxicity (pneumonitis) and having no treatment except a few rads on my spine for 8 months. Now the cancer has taken over my whole spinal column and I can’t walk from the pain plus it’s showing up in my peripancreatic lymph node. My main oncologist thinks Xeloda is next for me. I see divinemrsm you are on Xeloda - how is it working for you and for how long? I hope you’re doing well on it. My radiation oncologist doesn’t want to radiate anymore since he says I’ll need all my bone marrow when starting back on chemo. I would like to hear from anyone (good or bad) on Xeloda. Please and thanks……Sharware
2 -
Hi @sharware, I'm butting in here to let you know I'm happy to hear you recovered from the pneumonitis. According to pneumotox.com capecitabine doesn't cause many lung problems; rarely granulomas but usually they don't lead to SEs. I hope you find Xeloda tolerable and effective. Maybe you can make it to the Ocean City boardwalk sometime. Maggie
1 -
Hi Maggie! It has been a long year being off any chemo and on supplemental oxygen for all this time. I’m afraid the cancer has taken over my whole spine and both hip bones plus my peripancreatic node. I am walking with a walker now from pain in my lumbar region. I’m seeing a pain management doctor this week and hope he can give me some relief. I’m worried we may have waited too long for my lungs to clear up. You have a good memory….wish I could get out to the boardwalk sometime. Maybe if Xeloda kicks some of this cancer…time will tell. But thanks for the info that Xeloda shouldn’t hurt my lungs. Plus the link too so I can check. Hope you are doing okay and hanging in there too. ❤️ Sharon
5 -
sharware, wow, you have quite a story, being off chemo for a year? Was that due to the pneumonitis? It would be great if the Xeloda could get in there and stabilize the spinal mets so you could get some relief that way. Xeloda has been a very tolerable treatment for me. My side effects are minimal, no diarrhea or nausea; manageable hand and foot syndrome which I keep in check using creme and vaseline. I’ve been on it since 2020 with some recent progression to the spine, as per my above several posts. I finished the five rounds of radiation to the spine this week and have scans scheduled early next month to gage the effectiveness. So I’m still on Xeloda.
The radiation has kicked my butt. I had a lot of pain and have used both oxycodone and dexamethdose (a steroid) to help, which it has. The jury is still out as to whether the radiation will be effective enough to eliminate pain and the need for pain medication. I have to give that some time.
1 -
Hi @divinemrsm, thanks for responding. Yes, the everolimus caused me severe pneumonitis after taking it for just one month last year from Nov. to Dec. After being hospitalized, my mo stopped the everolimus, put me on supplemental oxygen and steroids (two rounds) and CT scans showed scarring and glass opacities in both my lungs. It took 3 months to see a pulmonary specialist even though my mo ordered it STAT. After Covid, most of the pulmonologists here retired or moved, so that didn’t help. It’s taken until now for me to get off the oxygen (except still on it at night). Of course, being off any cancer medication allowed cancer to progress. My radiation oncologist said he hesitated to radiate my spine because it would deplete my bone marrow. Now that my mo plans to start me on the new chemo Xeloda, he said chemo would deplete my bone marrow BUT my mo thinks radiation would help kill the cancer in my spine. Huh?
I’m sorry to hear your cancer has shown a slight progression. Hope your scans are better than expected. I’d like to ask what dosage you are taking of Xeloda and if it’s 7 days on and 7 off? And please let us know if the radiation helped? 🙏 Great to know your side effects have been tolerable on Xeloda. I’ve read on the Xeloda Facebook page that Preparation H helps prevent the H&F syndrome. I will get a tube to use just in case. Also do you have any anemia caused by the radiation? At least it would be great if your pain has been eliminated or reduced. Fatigue from the radiation will get better in time…hopefully you already feel better.
i did see a pain management doctor yesterday and he can’t see me for an injection in my lumbar region until Oct 7th. He’s booked up. So many people are in pain. I want to walk again without using a walker. I know there are no guarantees but I’m hoping. My spine is a mess with cancer and bulging discs, so don’t know for sure what’s pressing on my nerves causing sciatica. He’s ordered an MRI to help with a diagnosis, which hasn’t been scheduled yet. It sure is depressing.❤️🩹 Sharon
3 -
ANYONE on here - please share your Xeloda dosing and frequency with me and how you are handling any side effects? I’m running out of time to make suggestions to my MO. Thanks so much. ❤️
0 -
Hi Sharware, I’m so glad your pneumonitis is finally improving. I remember we both had it happen at the same time last winter on the Afinitor. I’m sorry it’s been such a long road to recovery. I’ve been on truqap in the meantime and it worked for a few months but now I’ve had progression again. I’m moving on to Xeloda as well. I’m starting at 2 pills in the morning and 2 at night which I believe is 2000 mg per day. The plan is 2 weeks on one week off. But if I have any signs of HFS after a week she will switch me to 1 week on 1 week off. It seems to produce the same results. She also ordered a DPD blood test which I will have done Thursday to make sure my body metabolizes Xeloda ok. Apparently there is a very small percentage who have this DPD gene that don’t metabolize it well so we will rule that out. I pray we can both have better results on this. There is a thread All about Xeloda on BCO that has some great information. Blessings to you.
1 -
Does anyone feel like they are having trouble moving? I can't really describe it, but it's like I don't feel like moving. I had Fulvestant injections 💉 a couple weeks ago. Can anyone advise?
2 -
@Greatly blessed i feel I have to drag myself out of bed every day, and push myself to exercise. I generally feel very exhausted and that my body is heavy, so I can relate to not wanting to move.
3 -
Greatlyblessed - Those shots will do it for sure! You are not alone.
1 -
Thank y'all for the reassurance. I was worried about it being progression.
1 -
@sharware , mostly Xeloda has been ok. I can do my normal things except for long walks. My hand foot syndrome acts up with long walks. But very few digestive issues. Some fatigue but not as bad as Verzenio. However I’ve developed a weird rash on my legs and my oncologist and dermatologist are trying to figure it out. My oncologist said that this is an uncommon reaction. Itchy bumps that look and itch like bug bites.
2 -
mommacj and aj - thank you for responding. I’ll come back on all about Xeloda after I finally get started on the new regime. Thanks for telling me about that topic mommacj. Lots to read up on. Prayers for all of us! ❤️
1 -
aj - I’ve been thinking about your itchy leg bumps and wonder if anyone has mentioned taking an antihistamine to help? Maybe check with your doctor to see what they think. 🤔 Sharware
1 -
Hi all. I have not posted here yet. Moving over from the Just Diagnosed thread. My initial diagnosis (ILC) was in 2019. I made it almost five years, but was diagnosed with MBC this past April. I suspect it was already metastatic a long time ago, in two vertebrae, or possibly de novo, but didn’t show on imaging. A fracture finally led to diagnosis. I’m told I’m bone only at this point, but imaging has repeatedly let me down so who knows. We do know it’s in most of my vertebrae, several lesions in skull, sacrum and hips. Am on Faslodex and Kisqali with Zometa.
5 -
kmom, sorry to learn that you’ve recently been diagnosed with bone mets. I hope your current treatment keeps you stable for a long time.
0 -
I have not had a good experience with the radiation to my spine. I had five targeted rounds of radiation to a lumbar vertebrae and to a thoracic vertbrea. Since those treatments earlier this month, I’ve had a lot of spasms in my upper neck and shoulders, above where the radiation was done. The tightness will last several minutes to maybe twenty minutes. I use an ice pack to aleviate pain. Then it goes away and returns intermittently. If I sit for awhile, then get up, I will get the spasms, but not always. I sometimes get light headed when I get up and it may take several minutes for me to get my bearings. Then I am able to pace myself to get ready for the day and get a few things done around the house. My vision is sometimes blurry in the morning when I wake up but then adjusts after a bit. I don’t have a lot of energy. I wonder if somehow I got a pinched nerve thru the radiation process. Is that possible?
I am still taking 2 mg of dexamethasone, a steroid, once a day. It helps with the pain, but I do not think long term steroid use is advised.
I have a bone and ct scan at the end of the week with an appt to see the onc afterwards. Not looking forward to what this shows yet on the other hand need to know.3 -
Hi all,
This is my first post, I follow the posts daily and benefit a lot from the advice and discussions here.
I am a 62 year old lady who was diagnosed with left breast cancer in 11/2020.
I underwent a mastectomy, chemotherapy, radiotherapy and started my hormone therapy for three years and a half
When I had a marker test three months ago the result for CA 15-3 was 45 (I repeated the test twice and the result was the same). After a PET CT scan, the uptake of one vertebrae is 3.6 and one of my lymph node was 2.9.
After a biopsy to my L4 vertebrae ,my oncologist confirmed cancer mets to my bone,
My oncologist refused to do radiotherapy and preferred to wait for 3 kisqali cycle to see.
After a while, my leg started to hurt a lot and it became difficult to walk without a crutch.
I told my oncologist about this, so he requested an MRI for the leg. The result was a tumor in the tibia bone (7.5cm), and there is also few areas appeared to be suspensions (right leg calcaneus, and small spot on the top part of left tibia)
When discussing with the oncologist and the consultant radiologist, we agreed to start with radiotherapy for the leg, (I have actually started the sessions and today was the first of five).
My question is,
should I continue doing radiotherapy sessions for all the rest of bone mets ?
this way I will stop taking kisqali for the entire treatment period, (I didn't even complete 2 cycles).
Or should i postpone the radio until I complete at least 3 full sessions ?
I am so confused and my oncologist doesn’t help much.
I can't make a decision and this causes me a lot of anxiety and stress.
0 -
In my opinion its always better to zap before things get out of control and too large. I am rather angry with my team for not zapping my hip or chest soft tissue masses when they were small and not causing any issues. By the time they agreed it all turned into a hot mess that has left me housebound for the last 6 months only able to walk with two canes and I never got any benefit our of the radiotherapy because they tried to radiate too large an area. Instead it was wait and see with the drugs which didn't work because the receptors had changed.
Essentially you don't sound happy with the current oncologist and communication, have you considered getting a new one? It really needs to be a partnership and for them to explain their reasoning. If you aren't at an NCI center you may want to consider it if its within reasonable distance as they will be more up to date on all this.
On a practical note I would radiate the worst tumor in order to walk and wait and see what kisqali does for the small stuff. Preserve your ability to walk at all costs. That's a large leg bone tumor though, how was that missed in the initial workup of potential mets in the body?
3 -
@sondraf,
Thank you for answering my questions. Really appreciate it
I completely agree with you about my previous doctor's neglect of my leg. I had been complaining for about a year, at that time I feel pain only when I pressed on the bone with my hand.
After I changed the oncologist he ordered for an MRI to both leg (after my constant insistence and because the pain was sharp causing me a limp when walking)
As for the NCI center, I do not live in the USA.
I agree with what you’re saying :
“On a practical note I would radiate the worst tumor in order to walk and wait and see what kisqali does for the small stuff. Preserve your ability to walk at all costs.”
And I have come to a decision which I will discuss with my MO,
I will go on with the current sessions of radiotherapy for the (tibia )because it is the most urgent matter.
After completing 5 sessions, I will start with the third session of Kisqali Which lasts for 21 days.
during the7 days rest period from the medication, I will try to convince the team to do radiotherapy for the rest of the bones.
And about missing the tibia in the initial workup, That was because they only did a pet scan from the brain to the mid thigh. Legs are not included.
1 -
Hi all, my first time posting. Thanks for all the good informaton and conversation here.
I had breast cancer in 2010. Had the full meal deal of chemo and radiation, as well as a mastectomy, including removal a few lymph nodes. Then had tamoxifen for 1 year and anastrozole for 4 more.
I was diagnosed with MBC in my spine and sternum in July 2021. I have been on a number of oral meds (letrozole, Ibrance, capecitabine, methotrexate and others I can't remember). Used them until each one stopped working. I have also been on Xgeva injections since the beginning. I had one shot of radiation on my hip in 2023, which was a miracle pain reliever.
Started on Eribulin in April this year, and it only worked until August.
I did the Foundation One blood test, and found out that I'm ER+. My MO wanted to get me on capiversatib and fulvestrant, but funding didn't come through, so I was facing $7500 a month.
So, now I am heading for Gemcitabine, and hoping my hair stays in. In the meantime, I'm doing more research on how I might get the other drugs fully funded. Looking at alternatives, including Everolimus (just noted the bad side effect above though).
So thanks for listening to that.
My question, for those with spine mets - has anyone had muscle weakness/loss? My quads have weakened quite a bit, I'm having issues going DOWN stairs mostly. Not sure if this is neuropathy or what. I'm doing exercises and starting on some whey protein smoothies. I have regular PET scans, and have been scheduled for an MRI to see if it's neurological.
YIKES! thanks to those who kept reading…… and thanks for any input/feedback.
3 -
Hi @rstogether, I have extensive sclerotic bone mets - spine and sternum included, as well as just about every other osseous place they could be. I have not had pain, nor weakness. I went to GP to resolve a loss of appetite (not related to BC, and still unresolved), and came out after several scans with a de novo mbc dx. I am doing an exercise program including resistance and aerobic training. In your pocket with support.
0 -
rstogether-I was diagnosed with extensive bone mets 8 years ago. I had tremendous loss of strength throughout my body; it was a sign to me that something was really wrong. Initially I was told not to do weight training due to the risk to my bones. A few years ago I broke a leg and was assigned weight training as part of my rehab. For the past 2 1/2 years I have done weight training to maintain my strength. I find that either the cancer or the treatments or perhaps just old age (I'm 66) affects my strength but the weight lifting has helped me to get a lot stronger. I also do a lot of other exercise for fun and to maintain my body. I play pickleball, do yoga, sometimes swim a bit and have a seasonal job that involves a lot of standing and walking. Use it or lose it seems particularly apt with cancer so I encourage you to do all that you can to rebuild and maintain your strength. Core and quads especially are so essential for mobility. Hope that the Gemcitabine works well for you.
1 -
@rstogether I'm really sorry that you can't get the meds you need. Is this an insurance issue? Can you appeal? Has your doctor contacted your insurance company? I wonder if you can contact the companies that manufacture these drugs directly, or maybe the mods here might know some alternative route through an organization devoted to breast cancer? I'm not an expert, but I think there must be a way. I'll second everybody's advice about strength training. I swear by pilates and it has been a miracle for me through all the hard treatment.
0 -
@rstogether i’m really sorry that you’re struggling with covering your medications, I hope someone helps with an information that can get it to you…everyone has a right to health.
as for muscle weakness. I have bone Mets and I’m 38 years old, but I feel my body is weaker because of the medication. I’m taking hormonal treatment and targeted therapy and they both have this fatigue side effect. I try to play sports as much as I can, I was told to stay away from vegan whey protein but I take basic vitamins that the oncologist approved.
much love
0
