Bone Mets Thread
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vlnrph— thanks for sharing your experience
I had a T12 compression fracture that is not cancer related. Was surprised to read I had a healing fracture of my left collarbone.
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So many of us got this diagnosis while docs were tracing down unknown bone or spine problems In my case, any longer and I would have needed a rod to support my femur bone, but the high calcium from the mets filled my kidney with stones first, and they could tell it was extensive mets just from regular xray.Why does the system not require some kind of periodic scans after treatment that would give women earlier warning of mets? It would be great to not have the double-whammy of physical injury plus a mets diagnosis all at once..And why is there no good blood test?
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Suzy, I recently learned that I have at least one skull met, and that it's not exactly new. My March bone scan report noted something to the effect of "lesion on right side of skull has increased in the interval between scans." Oh okay, so it was there at least one year ago, no biggie, no need to mention it to me??? I do have innumerable bone mets throughout my skeleton and they always say there's no way the report can mention everything. But new skull mets... yeah. You would think...
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I agree, definitely worth a mention! Do you find with the skull met that you have any tingling or numbness in your face? I’m experiencing that since it was found and MO, neurologist can’t figure out why.
Take care lulubee and all the best to you.
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Cure-ious- I just had an "Ah ha" moment when reading your post. I never had kidney stones until 2015, then WHAM an attack in 2015 and another in 2016. I was diagnosed with MBC in 2017--with bone mets. Interesting, bet my body was trying to tell me something. When you had your stones, was your serum calcium high? My labs have always been normal. But just a coincidence that I had kidney stones and then bone mets???
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Stilivin- I too have numbness to one side of my face--comes and goes. We thought TIA's, but second opinion neuro says No. Still do not know reason for the numbness. Bone scans do not find anything in the skull, but ….. Makes you wonder.
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Candy- I had slightly high calcium reading in the blood but that happened after the kidney stones, and like you, I had two separate bouts of kidney stones so the first one was no elevated blood calcium..
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For folks that did the liquid biopsy, I found out today when calling Guardant that their test does not pick up ER and PR status. So with progression I was hoping to forgo a bone biopsy. However without knowing if the ER Positive changed to ER negative, wouldn’t this be important before choosing another treatment
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Tinkerbell- that is interesting. I had a liver biopsy when first diagnosed. I have not had progression yet. I do not know yet if my MO will want another biopsy when/if I have progression, but I was going to file away the info about liquid biopsies. But if they cannot test if the cancer has changed estrogen receptors or HER 2 status, then that doesn't sound like too good of an option. Kind of important to know if it has changed, I would think.
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Candy, I did inquire about Her 2 status and it is noted in their review. However the spokesperson(guardant) in the medical section stated it is less then 2% of the cases may go from her2- to her+ with the liquid biopsy. I was more interested in the ER due to mine being low after traveling from breast to bone. Then again I was informed that the bone is difficult to obtain a good sample, at least in my case with a bone biopsy. The spokesperson said "why don't you do both", lol
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Tinkerbell,
FYI, I think that Foundation Medicine either now has or is working on a liquid biopsy as well. I believe that my cancer center is participating in trials establishing concordance between the tissue samples and the liquid biopsy. You could perhaps inquire of them as well.
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On a different and mostly irrelevant subject, someone kindly asked about my fingers (paronycnia from too-aggressive cuticle pushing). They're slowly getting better, thanks. This is certainly a side-show from the main event but one best avoided if possible. Be careful with your manicures and managing your nails.
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Joyner- glad to hear it! I got a brief area on large toenail after cutting nails- better with soaking and antibiotic cream.
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Good to hear Joyner.
It's amazing how much our nails become an issue with the various treatments. Mine are very ridged and brittle. A couple of years ago I made the mistake of trying gel polish when I was going on a cruise. HUGE mistake. The polish was much stronger than my toenails and I left it on too long. It caused my nails to split halfway down the nail on the big toes.Eek!
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My nails are wrecked, paper thin and ridged, very brittle. I have to trim them every week because they shred if not. I was told never to trim cuticles after the mastectomy so they are not tidy, either. But what can we do? I've had to learn I just can't care so much about nails anymore.
I've also been told to keep a coat of clear polish on them to protect them but seems like it just peels right off so I rarely bother. I do try to wear disposable medical gloves for any kind of cleaning or gardening and I think that helps.
My oncologist told me to rub them with a little tea tree oil to prevent fungus and infection.
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BevJen: Thanks for the information on Foundation One. I will call them as well.
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Yep....nail issues. Splitting along the ridges got so bad my DH applied gorilla Glue to the worstnail last night. ( I think he was tired of me obsessing over it.)
I’ve been taking supplements to strengthen them. It helped, but the ridges still split down the middle. I couldn’t trim enough to make nail polish effective. I was using paper tape and bandaids to keep them from snagging on everything.
It’s been 24 hours and the glue is holding. The nail bed doesn’t hurt anymore.
It seems like such a small thing, but is a constant reminder. Will let you know if the glue turns out to be a good long term solution. It looks like great polish.
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Superglue was 1st used in VietNam war for wounds. Look for New Skin at the pharmacy. Might be more sanitary for personal use than gorilla glue. I've been using it on wounds that don't heal well now with meds.
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New Skin is good stuff.
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Bev Jen. My dr said Medicare will only pay for pet 3 times per diagnosis. I'm not on medicare yet so I may ask for pet before I start medicare.
I had a pet when cancer was found initially. An MRI found my only met. I had the MRI thinking I had tore my rotator cuff. This was 8 yrs later. Then another pet to see if there were more. Nope.
Not being treated with curative intent cause tumor was so big. 7 cm. Dr though I should have bone replaced. But the team disagreed.
My dr feels strongly about using xgeva to prevent development of more mets. So no dexascan for me. Nearly with osteoporosis already as had a hysterectomy at 27 yrs old. Jaw issues are worrisome but not as bad as cancer.
I spose since I'm oligometastatic he's sure I'll be good a long while. Saw him after stable scans in January and will repeat in 1 year unless I develop pain or numbers go up.
The only thing about my cancer is that I am never comfortable sleeping on that side.
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Joyner- You have scans this month, right? When? Did I miss your post about results?
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Hi everyone, I haven’t been a regular poster on this thread for a couple years since my bone met was stable and painless. Recently, I’ve had slight progression in my hip bone and joined a trial called EXTend at MD Anderson. I’ve been randomized to the radiation arm (rads vs watch and wait) and I go in for the simulation this Thursday. I’ve had breast rads but not bone. It will be 3 sessions of SBRT.
Any tips or issues to share?
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Illimae, I recently finished palliative rads to my hip/spine (3 sessions) and to my femur (10) sessions. The hip/spine sessions took the longest - about 45 minutes each. The most uncomfortable part was having my arms held over my head for the whole time. After the first session, I figured out a better way to position my arms, and they gave me a brief break between the hip and the spine rads.
I found it easiest to keep my top on, but to remove my pants and wear a gown/robe. I had no real side effects, except maybe a bit of fatigue. No skin issues. I've not had breast rads, so I can't compare with those, but my experience was really pretty easy.
I'm glad you're part of a study. Let us know how you do with the rads.
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Illimae: I had 3 sessions of SBRT to my spine. It was quick and painless. Unlike breast rads, I didn't need anything as far as lotions for skin care. The most uncomfortable part for me was positioning but the techs did an amazing job trying to make me comfortable on a hard surface.. Good luck and keep us posted.
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Hello, I wish everyone the best. When I started treatment for MBC I did not imagine how these drugs affect on me. I was wondering if anyone has experience of Leukopenia and Anemia, what we can do about them, if any supplement or vitamins are helpful? My onc does not recommend any sort of vitamin/ supplements and I don’t know why.
Everyday I get fatigued more than the day before and having sleeping problem. Sometimes can’t sleep for long hours, then fall into a deep-like sleep then suddenly I wake up due to lack of breathing, like I am drowning.Please make me happy by your supportive response. Thanks 🙏 Juli
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Hi Julia,
Oncologists worry about interactions between our treatments and supplements. There is a widely held belief that these are harmless vitamins but in reality they can cause some serious issues depending on the drug regimen that you are on.
Having said that, I would suggest you push back and have them justify their reticence but you need to be specific. For example, my MO had concerns that the ashwagandha (to boost my hemoglobin) I was taking would interact with the Verzenio so asked me to stop. However, my GP tested me for B12 deficiency when I described fatigue and, yes I had low B12 so have been taking it for a couple of years with no concerns. It seems to be mostly a matter of knowing what you are trying to achieve and making sure you run everything past your MO just in case.
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Illimae-- in January I had 5 rad treatments to both hips. Because of how I am built and where the Mets were, the radiation passed thru my bowel. I was advised O could have diarrhea for a week. Also no Ibrance while on rads.
No skin issues. Nothing really as far as SE except diarrhea. (Which landed me in the hospital for 7 days).
Hoping your experience is without issues.
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Thanks ladies, I appreciate the info
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Hi Illimae,
I also had rads to my hip but only one session. The big issue for me was that the field also caught areas of my vagina. I felt it the second I got off the table as that is a very sensitive area. It only lasted a day or two but there was quite a bit of discomfort. They recommended using Vagasil to provide some relief.
It all depends on radiation field. When I had rads to my sacrum/lower back I made the mistake of eating lunch before I went. BAD IDEA. I went back to my office but became increasingly nauseous very quickly. Lost my lunch before I made it to my car (luckily I had the presence of mind to take a plastic bag with me). Eek.
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thanks Sadi
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