Bone Mets Thread
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About telemedicine visits - I haven’t had any. I changed doctors just around the time COVID precautions started. The old MO was getting ready to start them and I was only seeing her every nine weeks at that point. The new MO requires me to see her every time I get a Herceptin infusion which is every three weeks but no telemedicine...from the start it has been masks required, temperature taken in the waiting room, no friends and family coming to appts, etc. But even though I am seeing the doctor she does no breast exam, no stethoscope nothing that couldn’t be done via telehealth. I have to come in for my Herceptin regardless so doesn’t make that much difference, just a little more time waiting to see her.
About pain Before I was diagnosed I had knee pain and hip pain for years.I gained a lot of weight when I went through menopause and I had fallen and hit my knee a few times so attributed the pain to the falls and the weight.
Then, also pre-diagnosis, I lost a large amount of weight with diet and exercise. Those pains went away. When I got my first pet scan, I did have a met in the right pelvis bone, same place I had the pain....now, I think if I had Mets all the while since the hip pain started I might not still be here...I am talking eight to ten years...but who knows.
My doctor said it could just have been degenerative. The hip is one of the “phantom Mets” that they never reported on after my treatment started...does that mean it healed completely? I never got a straight answer when I asked. I do occasionally get the hip pain now, usually when it is raining.Knee caps are not a usual place for mets to appear and I don’t know if the PET actually picks up the knee bones because it stops there? But anyway , the knee pain started again after I went on AIs and I developed the “trigger thumb” after about a year, my hands get very stiff and lately I have pain in the big toe joints, the right side started looking a little bunion-y and if I take really long walks, I get pain there later. My formerly comfortable ASICS are not to be trusted anymore. I switched to Nikes for long walks. I do blame the Anastrozole for this.
I have a number of spine mets and had one radiated but I have had zero back pain both before and after treatment. Grateful for that. None in cervical spine, so can’t help BevJen with her question
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Candy, I'm glad you asked about the kind of exams others get. My Onc has never ever examined my whole body; I've never had to put a gown on. He listens to my heart and lungs, feels for lymph nodes in neck, and checks my legs and ankles for swelling. When I was first diagnosed with stage 2, that Onc did a complete exam every time and also for all my follow-up exams. Maybe because of getting scans every 3 mos, this Onc doesn't think more thorough exams are necessary. I like my doctor and trust him completely so I haven't had reason to question his method, but I have thought about it. I hope more ladies tell about their exams.
So sorry that you are having pain and hope you get relief soon.
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I see my oncologist every 4 weeks since that is the schedule for my fulvestrant injections. I was seeing his nurse practitioner regularly for a while but she retired and I have only had one meeting with the new gal. He checks lungs and abdomen. Since Zometa has such a long skeletal half life, I choose to get it just three times a year.
KBL, last month when you mentioned ordering a calcium/vit D supplement that would provide the suggested amounts in a single tablet, I thought “that is going to be one gigantic pill"! Are you happy with what you got?
Since the most we can absorb at one time is 500-600mg, when I was working as a pharmacist, the protocol at our facility required us to dispense divided doses, for morning and evening, separating them from any thyroid medication that someone might also be on. In addition, if a person was taking proton pump inhibitor such as Prilosec to reduce stomach acid, we gave them Citracal for improved absorption instead of Ca Carbonate.
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Re: MO visits and exams: I haven't seen/spoken to an MO since February. Its been phone only since March, and while I thought maybe this month would start to go back a bit to in-person, I got the letter that I've been 'selected for a telephone appointment'. They have also already set me to every other month appointments. I don't mind the telephone appointments, but they are always enormously rushed in 5-10 minutes and I don't always feel like my concerns/questions have been adequately addressed. Part of why I think they aren't doing in-person is that it is very very easy for the schedule to go off track and then you are stuck waiting for 2 hours in the waiting room.
The only physical exams I have had were a) the first doctor at the breast clinic the day I had diagnostic mammo/ultrasound/biopsy and then the first meeting with the oncologist. The NHS is weird in that NO ONE seems to ever want to touch you, not just breast exams. Even the onc exam was like three pats and it was over. But this month I will be insisting on an in-person as I have questions about my lower leg, my right axilla, and my breast changes. Its been almost a year since diagnosis, maybe we should have a quick physical check!? Also, no one seems to own a stethoscope in this country. It's bizarre. Now that our housing is situated its time to look into private options because I'm tired of riding herd on my 'team'.
Re: mets pain: The only problem I've had was that lesion in my pelvis/sacrum, but once that was blasted and the healing started, not to mention strengthening my back overall, it doesn't give me much trouble. I have absolutely got to stay on top of the strength training for both the degenerative side and the mets side, though. Supposedly I have a met on my left hip they were concerned had breached the corona or something, but that's never been mentioned again since the x-ray showed it was all intact. Ghost met!
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vlnrph-
Thanks so much for weighing in as a former(?) pharmacist...such valuable information! We have an amazing group, and it is obvious when someone with technical/medical background provides much-needed and appreciated information. Thank you!
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Good discussion about exams/telemedicine. Just depends on the MO and the area you are living, I guess. Some see MO monthly, some every 3 months. Some do telemedicine, some in person. Some have exams, some do not. I will be interested in how my new MO handles it--- me only traveling to the new office every 3 months. I guess we won't do telemedicine visits due to getting scans the same day as the scheduled visit. Will she put me in a gown and do an exam? Will just have to see. When you guys get your injections, do you see your MO? When I was at my old MO and went to get injections/port flush, the nurse did it and I didn't see my MO--- MO office visit was separate day- even though MO was in the same building. MO visit was every 6-8 weeks, not monthly. And now I am getting injections locally by a nurse so not to have to travel and MO will not be in this building.
Interesting.
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Candy,
I get my injections (faslodex) and labs the same day. Sometimes, I do NOT have any kind of an appointment with my MO. For example, I had injections and labs last week -- I had an MO Telehealth visit in between that time and the time before, which would have been about 6 weeks from the last time we "met." My next scheduled appointment is September, the same day I'm getting my injections. I've been on Ibrance/faslodex combo now for a year -- at first, every month I met with her as well as got shots and labs. As time goes on, though, she tries to spread out "visits" (Telehealth or in person) a bit. I've not gone longer than every 2 months, though. I am seen at a large academic center.
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During the pandemic I received a phone call from my MO once, I saw him in person once (both of us had masks on) and I had a telemed (video) visit once. The other times I just had vitals, blood work and my injections.
My normal 'exams' consist of the MO speaking to me for a few minutes about anything that may be going on. Then he does a physical exam where he listens to my heart and lungs, feels around my neck, my breast, my underarms, my abdomen, my ankles and feet.
Regarding pain, my tumor was/is in the sacrum. There is still some pain there including sciatic pain. I don't expect to ever be pain free considering that the tumor ate away some of the bone, plus it was radiated so there may be scar tissue. My back is weakened because of it but I am trying to do some stretching that seems to have helped.
Pain in general...all my joints ache, knees, ankles, feet, toes. Plus I have numbness in both feet. I do think this is mainly from the medications.
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Don't think I included earlier MO listens to heart and lungs, but I also recall she lightly taps my back looking, I'm assuming, for spine and rib pain.
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ladies thanks for answering my question about calcium+vitamin D, it was great discussion and I learned a lot from you (my MO spaced out putting me on calcium!!!)
Re visiting, I see my MO every 4 weeks the same day of injections and blood test (I put my butt off until I got them understood one trip for all things together!!!), during pandemic in person visits with MO schedule with mask as usual, he examines breast, under arm, neck (sometimes), and listens to my lungs and heart. No joint/ bone abdomen examinations. I also should see neuro oncologist every 3 months, those visits have been via zoom or telephone, except the recent one. But ridiculous how over the phone they examined my nerves?!!!
Vlnrph, as a pharmacist, do you suggest to take calcium 2ice a day each 500mg ? I do take one after breakfast one in the late afternoon, as I couldn’t find 1 g pill anywhere.
I do have a question for those who changed their MO. When you switched to a new MO, did s/he change your course of treatment? It is my only worry...
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I-beat-it- I am changing MO, but it is because I am having difficulty with my white counts after 30 cycles of Ibrance. We have not changed treatment yet, but that may be in my future. New MO is willing to tweek Ibrance schedule, whereas old MO was not willing. So if we change treatment, it will be because of the counts and not because the new MO disagreed with old MO treatment plan or wanted to change the treatment without a good reason to.
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I-Beat-It, I changed MOs due to travel difficulties. My treatment "technically" didn't and wouldn't change because I am stable on the first line standard of care. I say technically because my old center had started using a biosimilar drug and the new center still uses the original drug. This is like getting a generic versus the brand name drug. That's the only thing that changed.
I honestly don't think treatment would change much if a person is stable on their current treatment.
Also, I think someone asked about calcium and dosage - this is the Calcium/Vitamin D3 that I take it is the dosage for both that my MO recommended. They are softgels which is better for absorption. I spoke to a nutritionist when I was first diagnosed she recommended Citrical for the absorption too, but she said since these were softgels, they would probably be okay too. (I also take extra D3, not recommended by my doctor. I had to go on Rx Vitamin D for a while because my levels were low. Had not had them checked lately)
"Nature's Bounty Liquid Filled Calcium 1200mg plus 1000IU Vitamin D3 Softgels"
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Yes I-beat-it, 500mg elemental calcium twice a day is a good schedule. You'll probably get some from food also.
I personally take a fruity chewable, like in a generic Tums and pretend I'm having a tiny dessert. Viactiv is fun that way because it comes in chocolate and caramel flavors but is more expensive.
Don't forget about vitamin D which is important to absorption. I'm able to enjoy more sun at this time of year so have cut back on my supplement a little. Will have to go back up in another few weeks...
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Olma, thanks for showing this product. It points out why reading labels is necessary. The serving is two capsules. If I were to take this I would go with one in the am, another pm. The dosage form basically contains liquid chalk. Hopefully it didn't cost much more than regular tablets which dissolve quite easily, especially chewables.
From the National Institute of Health “The two main forms of calcium in supplements are carbonate and citrate. Calcium carbonate is more commonly available and is both inexpensive and convenient. Due to its dependence on stomach acid for absorption, calcium carbonate is absorbed most efficiently when taken with food, whereas calcium citrate is absorbed equally well when taken with or without food...
The percentage of calcium absorbed depends on the total amount of elemental calcium consumed at one time; as the amount increases, the percentage absorption decreases. Absorption is highest in doses less than or equal to 500 mg. So, for example, one who takes 1,000 mg/day of calcium from supplements might split the dose and take 500 mg at two separate times during the day." They explained better than me repeating myself!
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I take Citracal Petites, two caplets twice a day. They are easier to swallow plus they don't contain soy.
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Ladies who get palpated in the ankles during an examination - is there a reason for that? Is it concern over blood clots?
I take a chewable Calcium/D3 tablet once or twice a day - 1500mg in each. Since is summer I backed off a little as I am able to be in the sun, but when winter kicks in, its back to two a day. They aren't that bad and honestly its nice not to be stuck taking yet another pill!
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Sondra,
I believe the ankle stuff is to check for water retention, which can be caused by some of the BC drugs.
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vlnrph - yes, I do split up the dosing, one at lunch and one before bed. They are not too expensive and I did choose them because I don't like swallowing big, hard pills. Jackie, nice to know Citrical makes petites for that reason. : )
About the ankles yes, my MO used to check them as does my cardiologist. Swollen ankles can indicate heart disease and I believe liver problems, too. Chemo and Herceptin (and maybe other meds) can cause cardiac issues in some people, so I assume that has something to do with that part of the examination.
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Vinrph, I take the exact same pills as Olma put a picture of. I'm very grateful you said to split up the dose. I have been taking the two capsules at the same time after lunch. I will now split them up. I cannot take them in the morning for the exact reason you stated. I am on throid medication and knew not to take the pills within at least four hours of my medication. I appreciate you telling me about splitting them up. I didn't even think of that. Thank you.
Thinking also about what you said, I’m onPantoprazole but only for two months. I will be coming off that in early September. I hate having to take all this stuff.
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Ankle checks were done on occasion by my MO during initial chemo, now only my cardiologist (because of H&P, no heart issues) checks at my follow up appointment every 6 months.
I’m curious about my scans in a few weeks, I feel fine but wonder if I’ll see any changes to my hip bone met after radiation last month as part of a trial, since I wasn’t in pain to begin with, I have no idea how it went.
I wish you all well
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I take Nature's Bounty too. It is a rather large capsule but it's not that hard to get down because it has such a smooth coating. The potassium tablets are another story!
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Illimae, about radiation, I had my L1 vertebrae radiated last year because at that point, it was the only spot that showed active on my scan and the rads have totally killed it. I was told that the radiation does make it less likely to recur in the particular spot. I had EBRT which was the only type my insurance would approve. Good luck, hope you have the same result!
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For the past year, I’ve seen my NP once every three months. She does my physical exam (feels breast, lymph nodes, listens to heart and lungs, palpates, Abdomen) and she orders my scans, etc...
I haven’t seen my MO in at least a year.
Everything has been stable for me, thank goodness, the past 3+ years (except blood clots, which I did see him about since he’s a hematologist too)
I’m comfortable with this since I know I can see him whenever I want, but since I’m stable I’m not sure what we’d even talk about.
Do you think I’m making a mistake
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Jen - I was just thinking the other day that with Stage IV it seems once you get the ball rolling and you are on a stable regime that, while we aren't necessarily forgotten, I wonder if it isn't similar to the 'let down' when treatment ends for earlier stages. Its low level anxiety in trying to reconcile feeling pretty ok and going about day to day life with a ticking time bomb, just waiting for it to progress, rather than recur/spread. We are in 'sub-active' treatment in a way, a mentalhalfway house between the active, trying to find a regime that works and the 'cured' state, which we can never be.
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When I was at the doc last week talking about the results of my bone biopsy, she mentioned radiation may be a choice. I have to admit I know absolutely nothing about radiation or side effects. I have so many lesions in my spine, how would that even be possible? They’re all up and down and have been progressing for the seven years I haven’t known what they were.
I don’t know what questions to ask. I feel sort of like a newbie again with these results. I’m not sure it would be worth it to chance the side effects, even though I don’t know what they would be.
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KBL,
One of the reasons I had asked my "old" radiation oncologist to look at my scans together was to discuss the possibility of radiation and to see if anything could be zapped. (I come from the whack a mole theory of cancer treatment.) She told me that that is not generally done -- i.e., random zapping of mets -- unless there is pain in one site or there's some other reason to do it (impinging on something?) Just one doc saying this, but I can understand what she's saying -- if it's one or two mets, maybe, but I have more than that.
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I just did 5 days of radiation on mets in my cervical and Thoracic spine but that was because these areas were causing me pain. The radiation oncologist told me the same thing. They dont radiate multiple mets unless there is an issue like pain. They prefer chemo to stop the mets
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Hi, BevJen. So you have had radiation at some point? I've had hip pain and at the very bottom of my tail bone when I sit, along with pain basically all along the low back for a really long time, but it's never been bad enough to even take Tylenol or an NSAID on a regular basis. I have a high tolerance for pain, and it's just basically something at this point I've learned to live with. I make myself walk every day just to get my body moving. I think if all I did was sit, everything would start to stiffen up too much.
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KBL,
I have not had radiation other than at my initial diagnosis in 2003-2004 (to my L breast). But I was a big fan of microwave ablation for my largest liver met, and so I wanted to explore about radiation to my spinal mets. I do have some intermittent pain in my lower back, but it's not steady and comes on when I do very long walks or other somewhat intense exercise (such as a really good aqua fit class). The radiation oncologist says that that's likely due to the extensive degenerative disease in my back, not the mets.
Melmcbee,
Where in your cervical spine were you radiated? Not sure if you saw my posting, but RO is concerned about a possible met to C1 -- and that's something that she said they would likely radiate due to location and risk.
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BevJen, I believe they radiated c3-c5. I had multiple tiny mets but they were causing pain.
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