Bone Mets Thread
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@threetree - Hope the Claritin, fluids and extending the length of time of the infusion are as successful in diminishing the side effects for you, as others have experienced. Best of luck on Thursday!
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@threetree Yeah! I really hope this helps. 🤞🏻
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GoingtoBeatThis and RK2020 - Thanks so much to both of you for the good wishes. It will be Friday instead of Thursday now, as they needed more time for the fluids (2 hours!) and couldn't squeeze it in on Thursday. I hope this is the magic answer!
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Have been following the posts about Zometa. Jen, I’m so glad you didn’t mess around but went right to the ER and got relief from the troubles Zometa caused. Threetree, so glad your onc is amenable to your suggestions, and hope all goes well with your infusion!
I was on Zometa for 12 years. I got it with a slower drip as others mentioned and always drank a lot of water the day before the infusion and then all day long afterwards. I’m a big water drinker anyway and fill up a 20 oz. travel mug three to four times daily.
Now here’s my issue. After all those years on Zometa, I stopped when I had the femoral rod surgery last October. The orthopedic surgeon suggested I take a “holiday” from it since it was uncertain if the length of time I was on it was causing brittle bones. My last Zometa infusion was July 2023.Xeloda is my current mbc treatment, been on it since March 2020. Just before the femur surgery, my CA15-3 was going up a couple points each month and has continued, it is now 48.
Here’s the problem. On Monday, a piece of one of my molars cracked off. There is a filling in the tooth. I have no pain. I am in between dentists because mine retired two years ago and I dragged my feet about finding a new one. The soonest a top dentist in my area can get me in is June 3. I made the appt but I am worried about infection so I also have an appt at Aspen Dental for tomorrow because I could get in quickly. This is the first time I’ve had tooth problems. I’m not sure if I will need a root canal. Also, I am on the blood thinner Eliquis. Am I supposed to be off it for a couple weeks before dental procedures? I always had good dental exams twice a year with my last dentist and no jaw problems from Zometa, but I worry about any invasive dental work, especially as I’m not sure how good the dentists are at Aspen Dental.What can I expect when I go to the dentist tomorrow? If they say I have to have a root canal, what should I do? Should I wait a month and get a second opinion from thr second dentist? I have this catastrophic fear that a nerve is going to get hit and I’m gonna bleed out (some scary old movie I once saw). Just as I’m starting to feel a bit of upswing from a difficult 2023, now this. Am I overreacting? Any insight would be appreciated.
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@divinemrsm, upon a quick Google Search, the reviews for Aspen Dental are quite low from a large enough pool of individuals, it seems. We know it's not ideal, but perhaps it might safer, especially considering you are on a blood thinner, and that other things could complicate the procedure. While an infection could develop between now and then, it isn't to say that the work they do can't have equally severe, if not worse, repercussions. While many reviews seem to be about issues with billing, at least one noted they got an infection after going. Also make sure to let the dentist know that you are on the blood thinner and Xeloda. We'd also recommend reaching our to your MO to let them know in case they might have any additional information that you should alert your dentist to.
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@divinemrsm I hate to publicly bash an organization because I’m sure there are people with adequate experiences with them BUT I feel I have to warn you off Aspen. My husband had an unbelievably bad experience that shocked other dentists when they saw the aftermath. Long story short, my husband wanted an oral surgeon reference but Aspen said they could do the job. They used a cutter instead of a puller (wrong tool). and cut through a perfectly good tooth next to the bad tooth and left half a good tooth and its root exposed. When he called the office regarding excruciating pain, they said the original dentist wasn’t in and another dentist was reluctant to help. Unreal. A childhood friend of mine is a dentist and she explained their business model which, let’s just say, didn’t instill any confidence. Wish we knew then what we know now.
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@divinemrsm - if you live near a university that has a dental program, you might consider going there for an opinion. Also, have you asked your mo to refer you to someone?
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Divine - Thanks so much for your helpful comments re the Zometa. Wow, you did this for 12 years? Amazing! I had declined for a couple of years, but last fall decided to give it a shot - partly because of this new oncologist that I am liking a lot.
I've also been meaning to thank you for your sympathies and comments that you made last week at a time when I was not feeling well at all. It was probably because of the not feeling well, that I didn't get back to you and express my appreciation.
Re your tooth, I would 2nd what GoingtoBeatThis has said about being near a university and checking out a dental school. A lot of people in my area do just that. Also, I think most emergency rooms have dentists available, should anything get bad before you can get to your June appointment. I lost a chunk of a tooth around a filling once myself, but I'm having a hard time remembering how it all went. I don't think it got infected or caused a lot of pain, but I did need to get a root canal. The dentist then crowned it. I don't think I did any of the treatment for that on any sort of an emergency basis either. If worse comes to worst, you could just show up in distress at a good reputable dentist's office and tell them you have an emergency (don't call first, just show up). They can oftentimes work you in if you're standing there, but if you call, they'll decline to see you. I actually just showed up at a dental society office way back in my early 20's without any prior notice. I was working a temp job in the summer during college, and while on the job, I got a horrible excruciating pain from an infected tooth. The job was downtown and I took the bus, etc. and had no regular dentist at the time. The people I was working with just told me to go up to what was known here as the "Medical/Dental Building" and I had to walk about a mile up there. I was in so much pain, the walk was all a blur and I'm not sure how I made the walk lights, etc. at the right time or anything. I went into the dental society office and cried like mad to the woman who was at the front desk. She called around to 2 or 3 dentists in the building and one said to send me right up, as they "always had time for an emergency". They were great and became my regular dentist office for decades. I wish I had more that I could offer, better advice, etc. but I don't. All I can do is wish you the best of luck and please let us know how things go.
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Thank you, Moderators and rk, for the replies.
I, too, have seen some bad reviews for Aspen Dental. And like you say, moderators: “it isn't to say that the work they do can't have equally severe, if not worse, repercussions”, and that’s definitely my concern,
Rk, I’m so sorry your husband had such a horrible experience with Aspen. I very much appreciate your sharing what happened. I’m actually not surprised to hear about Aspen because I always wondered about the quality of dentists hired in a chain like that. I suppose they’d be okay for cleaning and xrays, but it sounds like more serious matters should be dealt with by a better qualified dentist. And your husband’s experience is what I fear for myself and want to avoid.
While it’s not optimal, maybe I should try to baby my tooth until I can get in to see the dentist in June. I’ll message the oncologist’s office tomorrow and see if they have anything to say.
I’m kicking myself for not finding a new dentist when the old one retired, but honestly, I now have a pulmonologist, oncologist, rheumatologist, cardiologist, optometrist, orthopedic surgeon AND a primary care physician, and keeping up with those doctor appointments along with monthly blood draws, scans three or four times a year plus Home Health Care coming into my home for a month after my week long stay in the hospital last October for the femoral rod surgery and an appointment with a local clinic to qualify for a reduced price Eliquis prescription, I’ve felt overwhelmed.1 -
goingtobeatthis and threetree, thanks for the suggestion but there isn’t a university near me with a dental school.
Threetree, it’s great that you were able to seek emergency help by walking into a dental society office.
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Divine, I have to agree with the other comments about Aspen. I went to a similar, new place in our neighborhood because I could walk there. I told them about my Stage IV cancer, Zometa, etc., but they didn't listen, recommended all kinds of stuff. I was so disgusted that I walked out and never went back there. I did find another dentist within walking distance. DH read up on this woman and was very impressed. It's a busy little office, but they truly care and will never push anything (except flossing-hahaha).
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I had a tooth break with the filling intact. I think I ended up with a root canal and crown. Another tooth broke off a chunk and nothing was done. It’s been years with no problems. If it’s not painful there’s no rush. Maybe they can move up the appt
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Hi everyone. I had complete dental extractions a year ago and now have dentures. My husband did go to Aspen Dental when we were in Orlando two years ago. He had to have a root canal and a crown. They did OK by him. As you said, some Aspen offices have good dentists and some don’t. It is hard to trust a corporate dental office. I have another question. Have any of you declined a certain drug? I just wrote my doctor a note opting out of using Afinitor. The risk vs benefit just sounded too scary for me. I have bone Mets only and I am 74 years old. My quality of life has been good. I have very little pain. I am not in denial, but I also don’t want to risk the side effects which are more frequent with those over 65. I am a bIt nervous about my onco’s reaction. Have any of you experienced this before?
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Afinitor was a hard hard drug and even if it had been working, I would have considered asking off from it. High risk of pneumonitis too, or other challenges, make it not worth it. I've yet to see it really work for a long time for someone.
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Hi, everyone. I have a little update. Results from bone biopsy showed same type of cancer, Er+, Pr- , Her2 - . Next step is Faslodex and maybe something else after the blood biopsy comes back, or maybe only Faslodex.
Cure-ous , you were right with the guessing about my doctor, she wanted me to have some treatment until we see the full picture . She agreed to hold off the infections until I come back. In the meantime is it anything that I can take, not to be completely without medication , like Aspirin, Melatonin, Barberine ??? I am going to start Chinese herbal medication Ping Xiao capsules. It’s popular among alternative medicine for shrinking cancer tumors , with low side effects.
Please, Pray with me guys my cancer to sleep . Thank you and God bless all1 -
Gigil, I would ask questions, why you can’t try something else. Afinitor sounds skerry. What about second opinion?
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@gigil, I understand your concern. I am 62 and my only pain, thus far, has been from other issues, rather than my bone mets. QoL is a big issue for me. I am taking the view that as Stage iv is regarded as incurable and a palliative approach rather than curative is taken by medical professionals, then the whole process is all about ME and what is best for me without destroying QoL.
Very shortly I will be having a discussion with onc about Denusumab - the side effects scare me silly. My bones are quite dense and strong so I will say that we can revisit after next dexa scan. Bone scan reports say that my bones do not appear to have diminished and blood work suggests that my bones are not degrading. I know she will say side effects such onj only affect a small percentage but, to date, I have fallen into "a small percentage" for a great many things with my cancer and mets. She is a wonderful onc but will be quite angry about my decision. It will mess up her treatment plan.
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Blueshine, Faslodex is safer and easier than almost anything else you might consider- you would get no benefit from aspirin or any NSAID unless the cancer has a PI3KCA mutation, and those usually occur after treatment as a way to progress on AI or Faslodex. XGEVA is important for bone strength but also has a strong effect preventing bone mets from spreading around, so hopefully you are getting that. Breast cancer mets happen mostly at night, so I would hesitate to try melatonin, which is a hormone that selectively turns on the nighttime signaling pathways. No idea about pingxiao, a couple papers I saw showed it helps make chemotherapy more effective, not that it has good activity when taken on its own. Maybe not worry about it and go on your trip and have fun!
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Cure-ious, yes I get Xgeva. I’ll try not to worry, but enjoy the life like in the movie Bucket list, with Jack Nicholson and Morgan Freeman 😀
Sending Love and blessings for healing
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Cure-ious, I'm curious (no pun intended!) regarding your comment about melatonin. I've read a recent article suggesting that melatonin can inhibit osteolytic tumor growth in bones. I did get the impression that research is in early stages, but wondering about it, as I've taken melatonin ever since my diagnosis (along with a small amount of THC tincture) due to insomnia.
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sfcakes, Yes, for sure melatonin is associated with reduced cancer growth, but I don't get how that squares with the fact that you put your body into sleep mode and that's when mets spread, I should go read up on that. And assuming it is anti-cancer, I'd like to know the mechanism. thanks for the link..
PS Thinking about it, I suppose if you take it at night, your circadian rhythm already has the night signaling turned on, and then melatonin may not only strengthen that but do additional things..
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I’m a melatonin and THC gal myself. Would be curious to see any information to contraindicate the use of melatonin in bc patients. My mo has never advised against it.
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My onc is in favor of me using it but I get restless legs from it.
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SFcakes, You probably know this all, but I found it was interesting tumor cells have a very disrupted or fragmented circadian rhythm, and are very sensitive to crapping out if you treat them with compounds that strengthen or restart the circadian rhythm in the cancer cell. And melatonin levels are often very low in cancer. So adding exogenous melatonin, which strongly reinforces the switch to night cycle, can directly screw with the cancer that way, and affect oncogene expression via RORa, Bmal and other clock genes. Moreover, it has some ability to inhibit the CDK2,4,6, c-Myc and Akt. So if my TMs shoot up, I will try it, thanks!!!
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Cure-ious, thanks for sharing that article about the circadian rhythm and cancer, very interesting. I know the early research involving mice doesn't always translate well to humans, but I'm generally fascinated at what's happening at a cellular level. And paying attention to, and encouraging, our circadian rhythm seems like it could be helpful.
On another topic, I'm almost 14 weeks out from spinal instrumentation surgery (8 screws and 2 rods connecting T7 to T11) and am overall feeling pretty good. No longer on any pain meds, and I had been taking Tramadol for months due to fracture pain before the surgery. There is one small spot of muscle atrophy, which my doctor looked at and felt, and he said this is not uncommon, to continue with PT exercises to slowly build those back muscles. He also cleared me for some gentle gardening, and it feels wonderful to pull weeds! Gently.
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Oh, sfcakes that sounds intense! Did something happen, like a fall, or is it preventative? Hope all heals well and I think after some of this work we are better than new…
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sfcakes, nice to hear you’re feeling good this far out from your surgery and that you no longer need the Tramadol.
I’m still walking with a cane 7 1/2 months after the femoral rod surgery. I can do many leg exercises easily, but the remaining issue is that putting my weight alternately on the legs as I walk forward—left, right, left, right—without using the cane for balance, I still feel sore. It’s mild, but it’s there. Without the cane, I limp and wear out quicker.One thing new is that I started seeing a rheumatologist who’s diagnosed me with rheumatoid arthritis and I’ve started taking medicine for it. It’s a low dose to start, plus I’m building up to taking it everyday, and it can take awhile before I feel improvement, but I swear I can tell that I may be already benefitting from it. I feel less sore all over. Too early to really tell too much, but it may be a game-changer for me in terms of the low level ache my body feels which I just always attributed to the bone mets.
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divinemrsm- If you don't mind me asking, what medicine are you on for the RA? I was diagnosed with RA in 2014 (3 years before the cancer). I was on hydroxychloroquine (Plaquenil brand name). When I was diagnosed with the cancer, my rheumatologist took me off it, saying that it was not safe with the cancer meds and my low white counts. I asked different times over the years if I could go back on it, and he still said no. I went to another rheumatologist and was told that we could try it but would have to monitor my labs closely. And that it was the only RA drug I could use. She would not even consider others- biologics, JAK inhibitors, etc. I am still not on anything for the RA. And now I have OA too.
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I was talking with DH last night about my worsening hip pain. I hope it's "just" RA and not more mets. MO has offered to move up my next PET scan if the pain gets worse. I'm kind of at the wait-and-see place right now. I know something's not right but am going to give it a few weeks and see. I'll see her again at the end of this month and will decide then if I want to move my PET scan up.
Who'd have thought we'd ever hope for OA or RA? They all suck and they all hurt. I'm now getting a rash with this new med (Truqap). The fun just never ends.
Carol
Edited to add that I'm in NO way discounting or diminishing RA or OA. I'm sorry if that came out wrong.
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candy, I don't mind the question at all.
First, let me say the rheumatologist I’m going to is extremely thorough. I was sent a seven page medical history form to fill out before I even had the appointment. She spent a long time with me on my first visit, asked many questions, did a physical exam, then took her time speaking with me about treatment options. She told me about side effects of Plaquenil. Yes, one is potential issues with white blood cell count. She then said she was going to consult with my oncologist. So I had a follow up appt with the rheumatologist two weeks later and before I returned, I had to get bloodwork—18 vials! I was tested for lupus and lime disease and RA among other things. Only the RA came back positive.
At my follow up, she prescribed the generic Plaquenil, hydroxychloroquine. Per my oncologist, before starting it, I had to get an ekg. Then after starting the med, I had to get another ekg two weeks later and will need one in six to eight weeks. This is to monitor for a rare side effect, cardiomyopathy. Also, my white blood cell counts will be monitored; I’m already getting monthly blood draws for the onc, so this is no problem. And I need an eye exam; I wear contacts/glasses, so again, no problem. It’s a lot of medical appts, but to me, it’s worth it.
I’m okay with trying Plaquenil. I’ve read that it’s a pretty tolerable drug. But also important, I have confidence in the rheumatologist. I almost didn’t go to my first appt with her because I didn’t think there was anything to be done for RA and minimized how it affected me. But then I thought, “oh what the heck, I’ll go”, especially since my PCP’s nurse practitioner went to all the trouble to get the ball rolling and refer me to someone and I waited months to get in. I was very surprised (and grateful) how valid the rheumatologist made me feel about having RA, and also surprised something could be done about it. I will be very curious to see if, when I start taking the meds every day over the next few months, there is improvement in how I feel, because it seems like maybe the needle is moving towards “feeling better” while I’m taking it every other day. Not sure if that’s just in my head or it’s real…..we’ll see. I hope my long-winded answer helps, Candy!sunshine, I totally get what you mean about hoping “just” for RA! And I hope for you it is! Wishing you the best.
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