Bone Mets Thread
Comments
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Deanna, I'd love the contact information for your ONJ specialist.
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Livers are odd things...they can get spots for no reason and they can go away again. We process everything through the liver...including our medications.
I was told that liver mets usually appear in multiples, so frankly, without a biopsy, I wouldn't assume a single spot was progression. I would at least wait for another scan.
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Lita it's the first time you are having a Pet/CT? Dani has it all the time. Basically, cut down in sugar. Not too many restrictions. Basically they don't want the person to have glucose, it should not interfere with the pictures they take that will have glucose has a magnet for the cancer. Will be cheering by the sidelines right along with you. You know you could get a CD at the time you are there if you would like to have it for your records
Thank you guys for all your support and kind words. It is extremely helpful to me to have you guys there when we need you. Thank you.
Casun waiting with you for the results. Great plans in hitting the beach with the little one. That is what living is about. I must say my daughter is just a crazy one, she goes to this tx 3 weeks out of 4, plus the scans in between, the moment she is out these doors there is not talking about this monster, it's all about the mundane of every day life. Monster be damned!!!!
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Thanks, Mom, yes this will be my first PET. It doesn't sound too bad, and I will certainly ask for a cd, too.
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Lita, I once sorta kinda forgot and had about 6 oz of spaghetti noodles at 7pm the night before a PET, and sure enough it elevated my blood sugar by about 15-17 points, I'd say
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Question: I posted on the liver mets also, but I was wondering if anyone here had this experience. My daughter is on Xeloda...
Onco did a B12 test it showed 376 (not too bad), Ferritin 64.0 Iron 45 TIBC 431 UIBC 386 Iron Sat 10.0 . Sorry to bore you with these numbers, but Onco never did these BT before. I just saw it on the Portal. Does anyone know what that means? Why would they have done this now? Nothing is so crazy on the BT that I could tell that would make do these tests. Sodium is on the margin. Hmm, what would bring that on anyway? Onco does not deviate from the norm in BT they do every week, in the past I've asked for Vit D etc...they did not think important to do. So why this? Next week we have an appointment again, I could ask then, but would like to have some background info to be able to ask the right questions. Thx for any info.0 -
Can any of you girls advise me of pros or cons of taking DIM supplements with femera with stage 4 bone mets? I can't seem to find any research . I was on it for 8 years plus 💜5 years of tamoxifen Before stage 4 diagnosis .!i felt fantastic on it
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another rough weekend....I am hoping it's the flu. Spent most of last night with dry heaves, since I hadn't eaten and it was horrendous. Headache, temp of 99.3. Have had the O2 on since about 4 this morning. Finally able to eat and had some yummy walnut multigrain toast. Gonna try some chicken breast in a few minutes. Temp is back to normal, and headache is gone. Oh vey....
Have an appt with my regular MO on Thursday so he can sign off on the end of life drugs, then onto the attending on Friday to have him order them. Hope to have the meds by this time next week, so when I'm ready, I can take them.
My BFF has already started grief counseling with hospice, this is very hard in her. She is such a peach....
Thank you for your attention...I so appreciate it.
Love,
Patti
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Patti - I really hope you are over this flu, the weeks ahead are uneventful, and the meds sit beside ready, but unused for a long time. By choosing to go through this consciously you are allowing everyone around you to do the same. Painful, of course, but a gift as well to those around you that love you. Amazing. Thank you for the update. Learning how its done ...
>Z<
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thinking of you patti. Hope you are feeling better. I hate that you had to get the flu on top of what you are already dealing with
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LIita, that's interesting about the food restrictions for the PET scan. I've had two so far, and neither time did they restrict me expect to say no food or drink for 6 hrs. before the scan.
Thinking of you Patti and hoping you're feeling better. Ditto what Z said about the meds, your journey. and teaching us along the way. Huge hugs.
My best to everyone. -Barbara
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Patti - Oh vey as you say. I hope today brings you relief. You and your BFF are very courageous girls. She's wise to start counseling but gosh it must be hard. I'm happy for you that meds will be available soon, but like Z said, left unused for a long time. I'm learning from you. Thank you. Sending you both much love and hugs.
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patti-relieved you are feeling better and able to eat. Hate to think of you suffering through that crappy night. I am thinking of you and holding you in the light. Hugs. MJH
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hello Ladies,
I am newly diagnosed with bone mets. Tomorrow starting radiation therapy. I am now on Arimidex. Do you know when hormonal therapy starts work in the body? Do I have to wait 3 months??
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Hi Lena,
I was diagnosed with Bone Mets in August 2016, my ONC put me on Zometra hormone therapy and advised me we would do a scan within 6 months to check progress... This forum provides a wealth of information and I suggest you request the MBC Guide which goes into a lot of detail on the subject. I hope this forum provides you with the answers, support and hope that it has me.
God Bless,
Ronnie
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Lena, good luck with radiation therapy. It takes at least 3 months to respond to hormonal therapy. MOs very often will scan 3 months after starting tx, but then again it depends on individual circumstances. That schedule may change over time. Of course, in the meantime, any new pain or symptom that lasts more than 2 to 3 weeks should be reported to MO and investigated.
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Lena sorry to hear you are here, wish you an excellent response.
Patti thank you for guiding us. Hope the meds people treat you right and give you what you need with no hassles.
So, never a dull moment, DD had numbness in the left arm, really bothersome, MRI of the cervical showed all the usual suspects, hyperintense enhancing lesions, from C through the whole thoracic. But the main issue is the "large paracentral/foraminal disc protrusion severely narrowing the neural foramen. with rightward cord displacement. etc... So now doc recommends Neurosurgeon, maybe he will advise on Kyphoplasty. We have to set up appointment, of course we only found out AFTER we called to check what's up.
I remember reading here,I am not sure if in this thread, but does anyone have experience with this? Is it a simple in and out procedure? Was it painful? Or a similar situation and was another approach taken? I'd appreciate any guidance.
Take care everyone.
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((MomAllTheTime)) - No experience, just hugs and peace.
>Z<
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Welcome Lena
patti - I hope it's just a silly flu or something. But feel better soon.
Mom - sorry to hear the news, I am no help. But hope you find someone on here who can!
I have a question though, can someone tell methe difference between sclerotic and lytic lesions? Is one "better" that the other?
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Thank you for your kind replies.
I feel that you are my closest persons now. I hope everything will go right for me and for you too. I have many questions my onco doesn't answer. But since it is about my life I want to know. We will be in touch.
Thank you
Lena
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Patti--your honesty and grace is truly a gift. Thank you.
MomATT: I had kyphoplasties for L3 and L4 compression fractures. So life changing that 18 months later I still bring the orthopedic surgeon cookies. (He also diagnosed me and was so kind about it, even though I don't think he'd ever had to deliver that news before.) I went from completely debilitated to walking without pain in about 48 hours. I stayed one night in the hospital. I think it's often an outpatient procedure, but mine came with a de novo stage IV diagnosis. Let me know what else you need to know!
Casun-my understanding is lytic is active and sclerotic is scarring, meaning treatment is working.
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Bluefrog thx. So glad for you that it worked so well. Her whole thoracic is a mess full of lytic enhancing lesions. I tell you this girl is an angel. But this is the T1/T2 now that is compressing on the nerve. Believe it or not there aren't that many people doing what this doc does. She will be seeing tomorrow a Neurosurgeon, he is an interventional radiologist also. I know of a different very well regarded name, that doc is an Ortho but the first one is in the same Center so we are leaning towards going with him.
I guess he will look at the whole picture and see what's what. I am totally in the blind on this one. Will keep you posted, if there are any smart questions you could tell me to ask, I'd love to hear.
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mom - sometimes I can't believe what you and your daughter are going through. Sending hugs and support.
Lyrics = active cancer.
Sclerotic = healing bone. Awesome. (unfortunately with some exceptions as Deanna points out below)
In my case the bone Mets didn't show up on scans until they were healing. Sclerotic lesions are more visible in scans.
>Z<
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Sclerotic means that the bone is deteriorating vs. lyric where the bone mass grows. Sclerotic lesions often are healing lesions or, said another way, healing lesions have sclerotic features. But the term itself does not always indicate healing. Sometimes it means a slow growing lesion going into the bone vs. a bumpy outward protruding lesion. Breast cancer mets can be either type of lesion and a dx frequently includes both. You need to understand the context in which they're being reported, e.g. initial dx or post tx evaluation (changes).
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MomATT,
My wife, KD, had a severe compression fracture on her T2. Unfortunately, she was not a candidate for a Kyphoplasty, as that procedure is a "live X-ray guided" procedure, and the view of the T2 was obstructed by the breastbone, shoulder blades and ribs. They actually attempted the procedure, but called it off when the surgeon could not get a clear view of her T2. You don't want them poking a large needle in her vertebrae "blindfolded". The risks are way too high.
My wife ultimately had spinal fusion surgery using rods and screws to fuse her C4 through T4. She is doing ok now, but has limited movement in her neck up and down and from side to side. BUT...... the fear of paralysis is not there anymore. :-)
So, I would be concerned if your Neurosurgeon thinks that he can perform a Kyphoplasty on her T2.
Prayers and gentle hugs for her.
Louis
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Hi Everyone,
My understanding is that lytic is where the bone becomes more porous as the healthy bone is retreating quickly from invading cancer cells. Sclerotic is where the healthy bone creates additional bone as a wall to fight off slower moving cancer cells, leaving behind thickened bone scar tissue. This is why, when bone mets heal, there is thickening and scar tissue forms that can cause stenosis or narrowing of passageways for nerves. Neither is ideal and both can be strengthened by the drugs like Xgeva and Zometa.
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Hello everyone,
My bone mets were sclerotic from the start...just got more scar tissue when the drugs began working.
MomATT - Hope they can figure out a way to help Dani with this new thing!!!
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thanks everyone for the responses. I got my pet/ct scan results and no lytic lesions and no new sclerotic identified. Everything I have appears to be sclerotic. Nothing outside my bones identified either. Phew! For now..
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Moma, I agree with Louis. I was told the same thing for my C-Spine mets. It sounds like Dani's bulge is pushing near the center of the spinal canal where it can pinch the spinal cord and nerve roots. I met with a neurosurgeon who was going to perform RFA Radio Frequency Ablation on my C-spine but tumor had grown beyond what he was comfortable doing without damaging the spinal cord further. Perhaps that is what they were referring to. Kyphoplasty is often not done for C-spine mets. There are parameters that the neurosurgeon will consider. Keep us posted. I ended up with Spinal rod fusion T-7 to T-12.
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Casun clap clap for you!!
WOW guys, first of all thank you so much! I have been reading and reading, I am only going by what Onco thought Neuro doc would do, now that you Louis and LIndalou are telling me that, maybe he won't? Hmm, i am really more scared, fusion is not an easy surgery, I know people that had it done to the lumbar spine, and to think of it done so close to the neck, really spooks me. Her whole cervical spine is full of mets, i just reread the MRI, which we kinda knew, they won't radiate unless she has symptoms.
So i wonder how much he's gonna wanna tinker in that area. Louis what do you mean "the view was obstructed" why? Mets. I know from Pet/CT from a few wks ago, that she has multiple rib fractures unchanged from last time, but last time there was no mention on the report. Why do they do that?? So I wonder if this will play a part on his decision also. The major problem is def the numbness it's quite severe. And you are saying Louis, that your wife can't move her neck so well, that's very worrisome.
And being that it's so symptomatic, I wonder how much time do we have for her to see someone else for another opinion. The appointment is in the PM, so I'll keep you posted. (I hope)
What method did you use to find the right surgeons for what you needed? This doc is in the same large Center where she is being seen, Onco recommended him, his credentials seem ok, and we needed an appointment asap so this seemed right.
Zar, Kathryn and all thanks so much for your support. It's really insane. I do try to write things down, i would never know what's what otherwise, hey who remembers normal?? I can't even.
Louis love the gentle hugs, you bet, that's what i've been doing for awhile, hugs to all.
P.S> Just an aside, do you think the Xgeva once a month was doing a/t??
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