Bone Mets Thread
Comments
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Hello friends,
I saw this interesting article about bone mets and am wondering if anyone sees an orthopedic oncologist as well as their MO? And if so, how has that experience been for you?
Oh and Dodgers - how could I forget that I have to drink that nasty barium drink before my CT scan?? Ugh! Hate that stuff. Gives me pretty instant diarrhea, yuck! I think I blocked it out LOL!!!
Thanks and happy Friday to everyone!
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Philly- As I have posted before, and everyone is probably tired of hearing, I live in a rural area. We do not have orthopedic oncologists in my area. I was agreeable to travel to see one, but my MO said it was not necessary. I looked online about what they treat, and from what I read they treat things like sarcoma. I didn't think MBC would be treated by that type of doctor. Since we use the same systemic therapy for my liver mets as my bone mets--Ibrance/lLetrozole/Lupron-- I would think I am being covered. And I am using Xgeva.
What do others think?
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I don’t have an ortho Oncologist in my city either. But there is an ortho surgeon who also fills the services of an ortho onc. I saw him today. He reviewed my MRIs and did X-rays
I will see him again after my Feb CT and bone scan.
So far, he is “monitoring” the strength of my bones.
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Philly, I recently saw an orthopedic oncologist for the first time. I went because I wanted some input on the met site in my acetabulum as I had been told when dx that I was at rush for orthopedic fracture. I was referred by my radiation oncologist to an amazing doc. Maybe it’s because I was there for an evaluation for potential fracture, but her convo with me was focused on the met site and what it meant for stability of my hips and pelvis now that it is sclerotic and not showing activity, We talked about surgical options, which she said I don’t need.
She mentioned that she came in from rounds to see me and that she doesn’t see many patients in the ortho office. It sounds like she is mostly doing surgery and follow up.
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jensgotthis— I saw an ortho surgeon/oncologist for a met on my right acetabulum, too
I sure didn’t feel like they see to many MBCers. The ortho surgeon and a younger doctor both asked me if I was on chemo. I told them I was on Ibrance and was asked what that was.
I felt the ortho surgeon knew his stuff but I was a bit out of his norm. The ortho surgeon said he sees the met but that he doesn’t see any risk of a fracture at this time. (Which is great news) but does want to look at my CT and bone scan scheduled for later in February to be sure.
I do feel better about bearing weight on my right hip inspite of the pain.
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I haven't seen an orthopedic oncologist but I am planning to see someone in the Cancer Rehabilitation Institute that is part of the hospital here. I asked about a cancer orthopedic but my doctor pointed me in this direction instead. I don't have an appointment yet but I'll let you all know if they think they can help me after I see them.
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I have a question. How many of you have tumor makers drawn and how often do you see your onc?
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I have TM's drawn every 3 months or so. I see the oncologist every time I go right now. It used to be the oncologist, then the NP, then oncologist again, but it seems to keep changing. I guess it depends on who is available but if the oncologist is, I see him.
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Candy, I saw an orthopedic oncologic surgeon when first dx. I hadn't been biopsied yet and they thought it could be primary bone cancer. Also I was at high risk of fracturing it. The MO thought the surgeon should do an upper humerus replacement but he was outvoted by the team. Radiation first followed by I,L,F,X. I. I did not continue to see him once biopsied.
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dutchiris, I see Onc after scans. 1st every 3 months then 6 months next will be a year. Meanwhile I have tumor markers drawn every month prior to faslodex injection. I see the PA-physicians assistant to check my labs. And give the order to infusion nurses.
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Hi Dutchiris,
I have TM's and blood work drawn monthly. Have been doing CT's and Bone Scans every 4 months. Just started Xgeva, due for my 3rd dose next week. I see the oncologist every 2 months and my Oncology nurse in between if I have any issues. It's a full time job this cancer thing!
Best
Stacey
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Love From Philly,
I have the same issue with that CT drink. I can barely make it through the scan and I am wiped out afterwards. I told my oncologist and she said that it is primarily to check the gut. I am going to go with contrast only next time, I really spend the hours afterward curled up with diarrhea and stomach cramps. What is that stuff?!
Best
Stacey
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JACK5IE , I see that you are from NJ too. Where do you get your treatments? Where is the 'Cancer Rehabilitation Institute' and why were you referred to Rehab?
I am from NJ too and go to Memorial Sloan in Basking Ridge. I have not seen an ortho oncologist since my MO said it wasn't necessary. I do see a neurologist who monitors my bone mets in the spine to ensure there is no nerve impingement. I get MRI scans every 3-4 months.
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hi all, I’ve been following this thread for a long time but haven’t chimed in lately. This issue about ortho oncs is interesting - I’ve not seen one. I have mets to the spine in the L-2 and L-3. I’ve had SBRT to the L-2 and it has been sclerotic since then but resulted in a compression fracture. Chemo seems to have taken care of L-3 for now and my last scan 3 months ago was (finally!) NEAD, however, for the last 3+ months I’ve been dealing with a “bulging disk” that is pressing a nerve around the L-2. It’s quite painful though I opted to try PT before drugs or anything more invasive. Was sent to a physical medicine specialist and to a physical therapist who specializes in spine. It felt like it helped a little but since the PT ended, the level of pain is creeping up again. I’m worried about it getting worse and hurting more but not quite sure what to do/who to see about this now. Maybe an ortho onc? Anyone else have this kind of problem? Thoughts? Thanks!0
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Good morning. I'm new to the stage lV site, I just found out last Tuesday that I have bone mets at the top of my thoracic spine probably around T1 or T2. Had a bone scan that showed arthritis everywhere but inconclusive for the thoracic area which is where I've been having a bit of pain that is different from the arthritis.So had an MRI which confirmed mets, although it showed no signs of compression.MO says it's about 2.6 cm. I'm going Friday for CT to see if it's spread to any organs. then a dexascan Friday afternoon. Next Monday I'll be getting a biopsy and the following Monday I meet with my MO to discuss my treatment plan. Head still spinning a bit, she did order some bloodwork, I assume tumor markers since I just had all my routine stuff a few weeks ago. Is there a fairly common initial tx? I assume it'll be ER/PR positive and her2 neg since that's what I started with 6 years ago. Been taking Arimidex since, will they likely take me off of that? Anyway, been trying to get a bit of knowledge before my appointment, I like to have some ideas about the drugs and treatments before I meet with doctors.
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Genny...so sorry you have to join the Stage IV forum. I know what you are feeling being newly diagnosed. Hang in there, it gets easier.
It seems that the first line of treatment is usually Ibrance/Faslodex/Xgeva. They come with some side effects but they either get easier or come and go. Most are bearable and it's much better than having chemo. Best wishes for you. Let us know what your doctor decides.
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Genny, we're so sorry that you have to join us but happy to welcome you with encouragement and information. I echo all of what Jack5ie said.
Also, I'm guessing that you're scheduled for a bone biopsy. That sounds so much worse than it is. I've had two, and the mental part, at least the first time, ws the worst part. The anesthesia, at least for me, was akin to a colonoscopy, and you won't remember anything.
Fire away with questions and know that we all have your back.
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thank you everyone, I’m flying home from Florida today, had a nice time with my bff but missing my DH and dogs and ready to get these CT’s over with and get on with my tx plan. I think I’m going to quit work, I will stay to get someone to take my place and get her acclimated. I do hair in a retirement home a few days a week. I like it but I think I’d rather have the extra time with my g/kids, they’re 6&1. I’m feeling sad and scared but I’m sure a lot of that will pass after the scans, biopsy and appointment with my MO. Joyner thanks for the info on the biopsy, it helped. Jackie, I’ve researched those drugs and it looks as tho I’ll make my $8300 deductible in no time..geesh, at least I’ll have 100% coverage after that. How do people do it?!! Thanks all for your help
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Genny, are you on Ibrance? If you have commercial insurance (i.e., not Medicare) you should look into copay assistance from Pfizer. It comes in the form of a card, and you give the information to the specialty pharmacy. They don't ask any questions about income, and it takes 5 minutes to fill out the online form and get the card. I think (although I'm not certain about this part) that your insurance company would still count your deductible as "met", even if it's paid by Pfizer. If you're on something other than Ibrance, other manufacturers have similar programs - just google "patient assistance" and the name of the drug.
Good luck with your treatment, and sorry you had to join us...
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The copay assistance from Pfizer works for me precisely as Piggy said. It counted toward my deductible and copay. It's not income dependent. Anyone taking Ibrance and has commercial insurance should inquire about it.
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I have a question that I was hoping somebody would know something about. I was diagnosed with bone Mets in November 2019. I was put on Ibrance and Faslodex, and had five radiation treatments. I had agonizing pain that I was managing with the Dilaudid. The pain got better after the radiation, but then it gradually got worse and worse again. I asked my oncologist if this was indicative of the cancer getting worse and spreading. He told me that I am having “bone growth“ and that was why I was experiencing so much pain. I suffered a few more weeks and I finally asked them this week to prescribe me some other kind of medication for the pain, as I was taking the Dilaudid every three hours. I was having horrible stabbing pain in my scapula where the cancer is. Today they prescribed me morphine for the pain, and it is helping. My question is this: has anybody ever heard of bone growth causing intense pain? I’ve tried to find any articles on the Internet about this but I can’t seem to find anything. Even my palliative care doctor seemed confused when I told her. Thanks for any input!
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Brenniejoyce, I've not heard of bone growth causing this type of severe pain. Given the length of time you've been in pain, I would think a new CT is in order. Perhaps radiation didn't quite do the trick, so a consult with an Orthopedic surgeon might be next. Or somehow you've got some nerve damage. Hopefully you've got a good relationship with your MO and he/she is open to questions. If this is truly bone growth pain, how long will it last? What is the next treatment option? In the meantime, glad to hear the morphine is helping. Hugs from JL
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BrennieJoyce I had cyberknife radiation to vertebra in July 2019, in August started Kisqali, October MRI showed slightly larger met with mass in the spinal canala and around nerve roots, PET CT however showed lower SUV than before Cyberknife and in fall I started to have pain (not very strong how you describe) for about a month. I was very afraid about progression, however January MRI showed that the mass in the spinal canal and around roots dissapear or fibrotise and the bone started calcify (to grow new one), so it is healing....that means that I think the grow of new bone can be painfull
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Thank you, JL, those are really good questions for my oncologist when I see him, on Feb 22. I am scheduled for a PET scan on Feb 14, so hopefully I’ll learn what is going on. Interestedly enough, my palliative care doc and acupuncturist both have mentioned suspected nerve involvement, bc I also have pain and numbness going down my left arm.
Maaaki, thank you for your input. It helps to know someone else has confirmed that bone growth can be painful. My husband always tells me I have a low pain threshold, but I think anyone would go bonkers from having a sharp, constant stabbing pain in your back. I try so hard to buck up and ignore it, but it really wears you down.
Thanks again, ladies, and good luck with your own ordeals
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I was also diagnosed with a met to my T8 in November. It didn't hurt too bad at first and I did 10 radiation treatments to that and my hip. The last several weeks it has been very painful and my MO ordered an MRI for this Monday. She never mentioned bone growth pain but was concerned for a compression fracture. The X-rays on that were negative though. I'm now on dexamethasone because the thought is I might have some myelitis of the spine from the radiation. I am generally very pain tolerant. I had been taking a Norco at night since that was my most painful time and supplementing with Tylenol/ibuprofen during the day. I was given oxycodone but it causes such horrific vomiting and nausea I save it for my bad days and only when I'm going to bed. Lately though the pain is bad enough that I'm on the Norco every 8 hours. That with the dexamethasone seems to be helping. I agree with the statement though that the pain wears you down. It's been both a physical and mental struggle for me. I am also in a rural area so we don't have an orthopedic oncologist. Our oncology team here regularly consults with OHSU when needed and there is a really strong coordination of care with local surgeons and the hospital.
The fatigue has got me down this week. I know that's a side effect of the Verzenio but holy cow! I have noticed my counts dropping steadily and I'm wondering if that's not part of it. My WBCs are down to 3 and my ANC is 1.6. I'm not anemic and my other labs looks good but I think this is contributing to the fatigue. I do well in the mornings and by 1 o'clock or so I have to lay down and rest or I continue to spiral.
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Hello emac877, thanks for your input. When I was on Ibrance, I had to take naps bc I couldn’t keep my eyes open, and the fatigue was pretty bad. I eventually developed pneumonitis and had to stop taking it. I will be shortly start taking Piqray, and it sounds like the side effects are just as bad. As for an orthopedic oncologist, I have Kaiser and I don’t know if they have one or not. I guess I could ask. They’ve never offered for me to consult with one.
I see you are from Medford.
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I am in Medford. I've been impressed with the oncology team here and I only mention the orthopedic oncologist because LoveFromPhilly had posted that article earlier which I found interesting. I am not sure one would have any more to contribute to my situation at this point. I posted my thought about the Verzenio after forgetting I was on the Bone Mets thread and not the Verzenio thread. I'll blame that on the fatigue. LOL. I tried to edit it but it didn't go away. I figure most of us are on a lot of the same meds so it' probably carries over as a legitimate thought.
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Thanks everyone for your input and advice. Piggy, I'm not in Ibrance, yet.. only Arimidex. I had my CT scans of chest and abdomen on Friday but it looks like I'm not going to know results till Monday, ugh, I hate the not knowing, it's the worse part. I get my biopsy of my spine tomorrow and then have to wait till the following Monday to see my MO for tx plan, so I probably won't know pathology results till then. I don't think I'll needs rads since the MRI showed no compression on my back. I've decided to apply for disability and retire the end of March, I'm 62 and have worked my entire life, time to concentrate on other things. I will check into these co-pay plans when I find out what drugs I'll be on.
Brennie, so sorry about your pain, hope you get relief soon.
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hi brennyjoyce
writing in response to your question re pain. i was diagnosed may 2019 with bone mets sometime soon after was given radiaition 5 treatments after tht was started on letrozole and ibrance, pain continued after radiation and i kept complaining. yes i was given pain meds and yes they helped too. at one point my radiation oncologist told me that she would have expecgted my pain to be gone by now. anyway this pain (and radiation) was to my spine so i went to a spine clinic where they specialize in metastatic disease and cancer in spine. long story short my doctor said he thought i was experiencing normal healing. but if i was at all concerned he would order another mri, i waited a week, pain got worse so i asked for another mri. i was also due for another pet scan which i had also.guess what, pain was there cause cancer was still growing and at this point was pressing on my spine iteself. had surgery and then radiosurgery. taken off the letrozole and ibrance and put on keytruda. they said my cancer had a genetic defect that allowed them to use this medication. anyway, having keytruda #6 tomorrow, but pet scan 5 weeks ago was NAD. i was shocked and of course very pleased, because there was so much cancer on the previous pet scan i thought it would never get better.
anyway it is not 12 weeks since my surgery and 10 weeks since radiosurgery. my pain is finally diminishing. but i am still needing to take morphine around the clock with dilaudid if needed for extra pain.
so in short, had radiation and treatment with letrozole and ibrance - didnt stop the cancer from growing. even though my cancer was 95% estrogen positive.
i would ask for another mri and or pet scan.
feel free to PM me if you'd like.
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I have a question on blood transfusion. I would like to know how people usually feel after blood transfusion? I read it here some time ago that after transfusion your energy level is up immediately. Friday pm, my Onc considered my declining HGB is too low and ordered me to report to the hospital for blood transfusion. The delayed process in the hospital was very unpleasant and the result was not what I expected !? My energy before was ok, though I may get SOB after 30 mins walk. I have no pain, no fatigue. My temp was elevated during transfusion, and remained at 99s at discharge until now. I am tired and with minor aches all over the body. I don’t think it is seriously enough for me to go to ER. And I do have a GI doctor appointment Monday morning. It all started the lab result for this GI doc was considered low, he sent it to my Onc, then resulted my Onc order to report for transfusion.
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