Bone Mets Thread
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grant - I slept pretty much the whole day after my injections for like the first year...then something kinda switched for me and now I actually go to work afterwards and see patients! It’s funny how we can have so many ups and downs. I am glad your wife is getting the rest she really really needs. I love my sleep!!
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Love... you're one tough cookie. You've inspired me to get out of my recliner and walk to the end of my street. Been thinking about it and I need to put feet on those thoughts.
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Hello to all....it's been while I must say. I am starting radiation for pain management on Monday. I will have 5 treatments to my left hip and I truly hope it helps. I was supposed to have treatment to my lower back as well but the radiation oncologist doesn't want to burn that bridge just yet. She's afraid if we treat it now and things get worse in the future that we won't be able to do anything. Has anyone had to take pain medicine for an extended period of time to help with pain??
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joE I’m so glad I inspired!! I find that one the days I fee the worst, if I move and exercise even the slightest bit (like even a 5 minute walk!) I feel so much better and human again. It is very easy for me to lay in my bed for a couple days in a row. I think that mentally I don’t want to do that right now because I have this nagging voice in the back of my head that’s telling me my time is possibly limited and I don’t want to spend it all in my bed! 😂 but my bed is just so dang comfortable!!!
Crazee - i can not answer your question but I am sending you a hug!0 -
you nailed it Love..
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Hi all - new here to this thread, so here is a little background. I've been Stage IV for 5 years with ILC in my stomach/peritoneal. I've been heavily pretreated for ER+, slightly PR+, and HER2- for 4 1/2 years. Late last summer, my scan showed lots of progression in the stomach area with large lymph nodes. I decided to go to Mayo Clinic in MN, and a lymph node biopsy determined I was now only slightly ER+, PR-, and HER2+++. In Sept I started on Navelbine and Herceptin and in late Nov found mets had spread to my spine. Finished 13 of 15 radiation treatments on my spine (while on chemo too) before I ended up in the hospital. Had uncontrollable “big D" where I got so incredibly weak and had critically low potassium. Lost a ton of weight. Needless to say, the last several weeks starting mid-December have been miserable trying to recoup from all that. It's amazing how once your body becomes so weak, it takes awhile to gain back strength. Finally eating more, getting stronger and feeling better, although still have pain in my back.
MO wants me to start on Zometa next week with my Navelbine and Herceptin infusions, and I wanted to ask what experience y'all have had with Zometa. Any bad side effects? Also, any suggestions for back pain? I'm taking Dilaudid which works but limit myself to once daily as I don't want to get too dependent on that. Radiation doesn't seem to have helped my back pain at all. I haven't done another scan or MRI of my back yet as MO said they usually wait at least 2 1/2 months after radiation, so I would have at least until March 1st before that would happen.
LovefromPhilly - I love my bed (and couch too!) Find it hard to get up and MOVE!
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Southern....I was given Zometa for two months. It really did a number on my kidneys. I was immediately switched to Xgeva. I've been on Xgeva for 10 months and have had no problems.
Hope
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CrazeeJane:
In answer to your question about pain meds, my answer is yes. Very much, yes.
If your pain gets worse now, ask her about clearly differentiating treatment areas, so that you can go back to the area.
Jennifer
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Southen... I've been on zometo infusions since March 2018-started every two weeks the first month and have done the monthly infusions since. You must drink 2-3 quarts of water after infusions because the kidneys filter it. I start extra water the day before and continue for a few days but I guess I usually drink 60 oz a day anyway. Only side effect has been flu like and some pretty uncomfortable intermittent hip and pelvic pain but now it's minimal. It has really saved me. I thought I was going to be able to spread out Every twelve weeks but I've had some progression in the spine so I start a new round of radiation Monday and will probably have to continue the monthly infusions. I assume yours will be infusions because shots can really give you a problem. My infusion takes about 30 minutes after the IV is in. Chemocare.com has details of the medicine. My oncologist gave a copy but you can read it on line. Good luck. Hope you're better soon. J
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Crazee... Yes off and on. I think I will be that way , but I do make note of different pain. Radiation really crushes the pain but I have that new area to treat now. Not really worried about dependence since the metastasis, just want to stay mobile as long as possible and try not to mask new pain. Hugs J
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bootsie, where are you located in Illinois?
Crazee,yes I require pain meds regularly now. I didn’t need much of anything for most of these 10 years with bone mets but things have progressed to the point that I now wear a Fentanyl patch and take Dilaudid for breakthrough pain. I don’t find the meds interfere much with my daily living and I can actually drive on the patch as long I don’t take the Dilaudid.
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Southern, I have been on Zometa since June 2016, every 3 months. Drink lots of water. I also take a Claritin the day before and the day of. For some crazy reason it helps minimize the joint aches I get for a day after. I am usually fine the next day. I read this on another thread and it really helps.
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I'd love to hear your thoughts on something: I had a mammogram this week of my right breast and they found spots which they said appeared to be benign calcifications and said I should get another mammogram in a year (I did the 3D one). My MBC was dx in the left breast, which I then had removed. So, do I wait a year or do I contact the breast surgeon to see if we should do something to make sure the spots really are calcifications and not something else. I should say that I have no reason to think I have progression - TMs are stable and my CT of chest, pelvis and ab was clear last week (I have a bone scan this coming week).
I don't want to go overboard with biopsies (I always wonder if we cut into the tumor whether it helps the spread) but also don't want to blindly wait if I should do something more. I've never been told I had calcifications - what causes those?
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Jen, could an ultrasound provide a better determination of them calcifications without having to do a biopsy? If not and my MO saw the imaging and was not concerned, I think I’d wait. Like you said, you have no reason to suspect progression but I get the mindf&@k. Good luck 🙂
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Jensgotthis - I can totally understand the mindf@!k too. I think calcifications are areas of tissue that become hardened and mineralized due to several different possible reasons but in the breast it could possibly be from where there were benign cysts like fibroademonas were (very common) that sort have walled themselves off from nutrients and blood circulation. And eventually they become calcified- maybe sort of like fossilized tissue?
If having a few more scans will help ease your mind, and insurance will allow it, I say go for it.
I'm having a sort of similar situation right now. I was in a car accident 2 months before my mega bone metastasis diagnosis in 2017. My neck has never felt "right" since (painful when sneezing and some pain and discomfort down my arms at night while sleeping). My MO ordered an MRI of my cervical spine so that we can give me the green light to do physical therapy. Welp. The MRI is showing metastasis in my neck spine. Dang!! But it's unclear if it's new metastasis or the MRI is picking up on old lesions that have healed? So I am going on on Wednesday for another bone scan (just had one in October 2018).
Total mindf@!k happening during this time.
My intuition says "no way!!" And it doesn't make sense with how well everything else in my body is doing. But then again, neither did the diagnosis when I received it initially. I was in totally shock! Really hoping to not be in shock again come the next scan results...
You have all our support to do what is best for your mind and heart ❤️
Love,
Philly
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I had calcifications in my right breast for years. At 62, DX with IDC. All my scans on my right breast remain clear.
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Hmmm... this conversation is making me wonder about the need for mammograms. My RO had been ordering them prior to my MBC diagnosis as I was part of a clinical study which, coincidentally, ended just prior to my new diagnosis. When I received the order for a mammogram I canceled it as I didn’t see the point of checking to see if I had BC given I have extensive mets. I haven’t had a mammo for three years. Should I be getting my GP to order one?
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my MO said I'd never need another mammogram. What's the point he said. But I think “what if the er pr her changes?" The horse is out of the barn I guess
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Mammograms are usually not required once metastases are diagnosed. I guess it is presumed that whatever treatment you are having is sufficient to take care of potential new lesions and overall survival is not impacted.
Other cancer screenings (colonoscopy, etc) can also be eliminated unless there is a very good reason to have them. Certainly, if you suspect a melanoma from skin changes, it should be reported but you may not gain much by aggressive surgery or therapies.
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My MO also told me that I’m in systemic treatments for the Mets and getting pet scan regularly so he doesn’t see the need for Mammo.0
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Are you all getting pet scans routinely? I've only gotten a bone scan and ct.
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twiggy, I’ve only ever had CT’s, Bone Scans and MRI’s for my mets. I just assumed no PET because I had no mets to solid organs that a PET would be used to evaluate.
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I’ve only had CT and bone scans. PET is currently only available in Vancouver and as a result the wait times are horrendous. Fortunately that is set to change soon as a new scanner will be in operation at the Cancer Agency here in Victoria very soon. Having said that, I have never been particularly fussed about not getting a PET. I’m not entirely convinced it would show much given that bone scans significantly under report for me. I believe it’s the nature of my beast, slow and plodding but relentless.
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Odd enough, in Italy the protocol seems to lean less towards PET scans (my wife's MO said only one per year) and more towards MRIs and CTs. She is also getting a sonogram of her breasts, armpit and liver every 6 months. Guess they are not keen on too much radiation. If it were the States, I would suspect it to be insurance-cost related but in Europe they dont really care much. As long as you have a valid referral, its a go.
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Oh, and MRI? Wait here is close to a year for most conditions. Not sure about cancer patients as we tend to move to the front of the line quicker. It’s always interesting to try to decipher best practices from the preference under a for profit system versus the public system here in Canada.
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MRIs every 3 to 4 months. Wait for them is about 1/2 months but MD has the option to apply a green code to the referral if he thinks its urgent so that hospitals must fit you in within 3 days from the referral date of release.
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Twiggy, I had a PET/CT at my original dx, but after that it's CT and bone scans every 3 months. Which reminds me, LovefromPhilly, what kinds of imaging have you had? PET's usually scan from skull base to mid-calf, which might shed some light on whether the MRI is picking up healing or new mets. Either way, I hope you get relief from the neck pain soon.
Interesting conversation about go or no-go for mammos. Anyone else's MO weigh in one way or another? I'm due but have been putting it off.
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VAGINA HEALTH REAL TALK!!!!!
do you ladies still go to see your ob/gyn? I have an appt tomorrow - haven't gone in a while, actually not since before my diagnosis in 2017
Honestly - I am not super sexually active as at age 41 I am in medical menopause and my vagina tissue has lost its integrity and tears more easily. I do use a local vaginal cream which is Estriol (a more gentle version of estradiol - which I am happy with).
I am afraid of tearing tomorrow and really don't even see the point of it except my friends were pushing me to go. They think I need to continue having these kinds of check ups even though my whole body is being scanned and I reallY don't have any reason that I can think of to go in.Any thoughts or advice??? I want to cancel!!!! I just don't want to be poked and prodded
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thanks jaylea
I have had CT scans with IV contrast, MRIs with iV contrast, xrays, and nuclear bone scans. I have never had a PET scan so far. It does get confusing with all the different aspects of scans and what gets good imaging of what. From my understanding, since the cancer has not shown up in my organs on any CT scans, then maybe that’s why they are focusing on my bones? But I don’t know! I have my list of questions to ask my MO at our appointment next week. I just maybe need some making sure I understand what I am asking?0 -
And there lies another question of mine LovefromPhilly. My GP recently booked a physical including a Pap. What the heck for? In case I have cancer? Don’t see the point and will ask.
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