Bone Mets Thread
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Chef, so many things about your recent post reverabate with me. When I was on halaven (I think) I had unexplained fevers. Not very high, but it felt like being hit by a freight train. They almost always came on at night. But by the time I went to doctor, everything was normal. I still have that problem with pain issues. There are many days where I can barely move, but laying down hurts, too, and forget about sitting... it’s the worst. Come Tuesday morning, pain seems to be well controlled. All seems well. And even though I try to explain to doctor how bad it gets, it’s really hard to do that when you feel well.
During the worst days I think “I can’t do this. This is no life!” But on good days I find myself thinking, “I can do this. One bad week out of three is totally doable!” Of course even when I’m in the worst moments I know that I’m in no way ready to give up. I just wish I could have a somewhat normal life. I can deal with discomfort, but getting from PAIN to discomfort has been such a challenge. And I have the additional fear that im already running out of treatment options. I usually look forward to getting scans after 3 cycles of a treatment, always optimistic that this treatment is working. But every single time I have had progression. Now im terrified of my next scan because i really NEED to believe this treatment is working. Ugh. The joys...
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TNMTNGAL, all that sounds painful. What's next? Have you seen your doctors? Hoping you get answers and feel better soon.
Ihopeg, I understand your being scared. No one wants to hear they have mets. What is the plan for you now? I have lots of bone mets and other mets too. Once you start the treatment plan I hope you will feel a bit more calm.
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Muddling Through...I am actually at my regular dr right now waiting to be seen. Yes, very painful. I’m hoping they can figure out what this is and fix it. I’ll update later.
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prayers coming your way!!
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it’s me again:( thank you all for your replies, and understanding and support. Please help! I woke up with my left side of my face, mouth, teeth and lips numb. No pain, no pins and needles just like lidocaine numb? I’m scared and tired and miss my daughter who is in Florida having a wonderful bday vacation. I feel like everyone of the weird things that happen to me could be from chemo but the drs never seem to think so? Anyway, numb face anyone? I
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chef47, I didn’t have that during chemo but you never know, perhaps it’s something benign like Bell’s palsy. I’m sure your MO will order a brain MRI to rule that in or out.
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Hey Chef...
Been reading your posts...been thinking about you...not posting much as my status is unstable right now...
I am a board-certified periodontist...intentionally been learning a great deal about dental implications of MBC...
Numb lip is significant for possible mets to jawbone. It is extremely rare and unlikely. But mets to the jawbone should be ruled out when patient presents with numb lip. Nerves to other areas you mentioned are near the nerves to the lip.
It could also be chemo-induce neuropathy as you mentioned.
I suggest looking at it as more information. Does not mean anything specific yet. Just follow up with doctors.
And do your very best to keep your outlook positive. Enjoy every single moment you still have to ejoy. Life is precious.
Prayers for you and your family.
Gumdoctor
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Hi
Thanks for your reply. I found out the same time that I have extensive bone mets to entire spine and pelvis. My doctor was only worrying about the Lepto. When she gave me the mri prescription, she also gave me one for bone biopsy. Now she said no. I see her for methatrexate tomorrow then I am seeing a dr at penn.
Problem is that the cytology report has not come back and I also had melanoma and thyroid cancer. They need to know where it’s from. I’m freaking out. Thanks again, ilene0 -
Hi all, so much on the thread these past few days resonates with me. I am SO TIRED. I had an iron infusion on Friday which should help my energy levels, and I think I feel less sleepy all the time, but my body just does not function like I think it should. I feel like I'm stuck in a permanent aqua aerobics class - every movement of every limb has extra resistance against it....
Chef - I do feel for you with your pain, my occasional sciatica came back with a vengeance a few weeks ago and just a week of limping and struggling to get up & down steps and not being able to sleep had me in tears. My onc prescribed fentanyl patches & they seem to have done the trick. She also said she'd refer me to Hospice's palliative care team if the fentanyl didn't work - reminding me Hospice is NOT just about end of life, and their pain specialists can work miracles. Regarding your numb jaw / lip / cheek - I had the same December last year. Went for my regular Zometa IV and driving home after I felt the left side of my face go numb. I've had a root canal on that side 10 years ago, so went to the dentist for an x-ray & they did pick up what they said was an abscess, but I didn't have the pain I remember from the original abscess, so sat on the referral letter for dental surgery. January scans showed progression, and they specifically looked at my jaw, but didn't see anything definitive. Within a week of starting chemo again the numbness was gone. So I do blame the bone mets for it. My markers went down for 6 months, and I've had progression again since then, but the numbness hasn't returned, so its just one of those things. Do talk to your onc about it though. And try to stumble into their office looking terrible at least once, so that they understand how you're feeling :-)
The worst for me is my dd worrying about me, I have so little energy & immunity the slightest bug hits me & I just can't do my day. I took the day off work yesterday & a friend took dd to school - she spent break time telling her teacher how worried she is about me. Love that the school is so supportive and looks after her so well, but hate that a 9 year old is having that weight on her shoulders. I did school run today & dragged myself to work to prove to her its not that bad.
Sending positive thoughts & love to everyone. Keep on. That's all we can do.
xx
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I hardly know where to start....so many of you are having a struggle right now. Chef...I can only offer you love and prayers that you find your way back to the light via your oncologist's office. Karz...you're so right. All we can do is to keep putting one foot in front of the other. TMTNMGAL...wishing you the best. Ihopepeg.....sending you hugs. And love and prayers to all of you who are having a hard time right now. Lita, as usual you're amazing....so cool and unflappable. You have my utmost respect and love.
The pain I've had in my back from my T8,9 mets caused by having an ultrasound of my pelvis last Thursday has been bad but hardly worth mentioning in the face of what I've just been reading. The muscle spasm will eventually leave me with just my normal pain.
Love and hugs to everyone again....I just don't know what else I can say.
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Oh! I came on to post this link in case it's useful.
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Ihopeg, good luck with your appointments. As uncertain as things may seem right now, there are bound to be options, I’m optimistic your docs will have a plan moving forward.
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So I need advise---
What scans do you all get to monitor the bone mets???
I get CT chest/abd/pelvis every 3 months. I have liver mets and bone mets. And of course the MO is more concerned about the liver mets. I had one PET scan at diagnosis Sept 2017 and it showed osteolytic lesion at C2 cervical spine, and sclerotic lesions in the thoracic and lumbar spine. The CT scans see the thoracic and lumbar spine and will say "stable sclerotic lesions....." but of course the CT doesn't reach the cervical spine to comment on that lesion. And the PET showed uptake in the humeral heads of both arms, but of course the CT doesn't show that either.
I wanted another PET---1 year anniversary---but the insurance denied the request and the appeal. So PET option is out unless the scheduled CT's show concern.
My MO ordered a whole body bone scan for end of the month.
Is the bone scan the way to go???? MRI????
Which test ---minus PET---is the best to see bone mets changes, if they are getting better or worse or going to other bones??? I am having more pain in the back of the neck and right rib area.
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candy-678, I have a bone scan about every three months and CT of chest, abdomen, and pelvis on the same schedule. Never had a PET or MRI.
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candy, I currently have stable bone mets, so I have a nuclear medicine bone scan (head to toe) every year and CT chest/abd/pelvis every 4 months.
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What do I do when I move? I'm moving a thousand miles away, I like my onc. need to find a new one, and continue treatment which may include getting a PET scan at the time of the move. I just don't know how to organize the old doc vs the new doc.
Another question. Are some of you affiliated with a large CA center and also a more local onc? How does that work? Who does what?
I'm so clueless about these things.
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princess, I’m facing a similar situation, just not as soon. I plan to move approximately 9 hours away and will need to find a local hospital to get my H&P every 3 weeks (my insurance companies cancer care advocate will help find a place in network in the area). DH and I drive back to MD Anderson every 3-4 months for scans and MO follow up. Anyway, that’s the plan, not sure how it’ll work out in reality.
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princesfluffybritches, I have an oncologist @ UCLA, which is 3+ hrs. away, as well as a local onc. I see my UCLA onc, who is the head of breast oncology there, approx. every 4 mos. I consider her my lead onc -- something she asked about from the get-go; but because of the distance, she actually encouraged me to have a local onc for monthly follow up, as well as wanting someone local who knows me and has my records in the event I need the ER or other immediate care.
You have to clarify your desires up front and be sure your local onc is willing to defer to another onc's input for major decisions or questions, such as tx changes and dose adjustments, if necessary, without ego getting in the way. I've been doing it this way for 10 years, and I feel very fortunate to have two oncs on my team.
Hope this helps. Deanna
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Thanks to MuddlingThrough and illimae for responding. I guess the bone scans that you both get will show changes- stable or worsening. I thought I had read on Mr. Google that bone scans are not real reliable. The site I read on Mr. Google preferred PET for monitoring bone mets. Have either of you seen changes when you have had the bone scans? And I guess your MO thinks they are reliable or they wouldn't continue to order them.
Any others please chime in. This is confusing I think. How do you determine which test/scan is best for monitoring our conditions? What if things are worsening and we don't see it?
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Hey Deanna,
How did you get connected to an oncologist at a large university?
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Candy-678 I had a bone scan that I was told showed clear. One week later I had a PET-CT (followup on liver mets detected with MRI or maybe CT, I had so many scans at diagnosis that I can't keep them all straight) that showed more bone mets than it was possible to count all throughout my skeleton, according to my MO. Either the bone scan didn't detect them or the cancer went crazy over the course of one week. We've tracked the healing with followup PET/CT scans. I remember someone else here also had a bone scan that didn't pick up bone mets but they were found with a PET-CT and her doctor told her that it had to do with whether they are osteolytic or osteoblastic. I did some research to confirm and learned that bone mets that are osteoblastic are better seen with a bone scan and osteolytic mets are better detected with a PET-CT.
Here's a good research article that explains what each type of scan picks up for bone mets caused by breast cancer (including x-ray and MRI), scroll down to Clinical Aspects. It states that PET is superior to a bone scan for the detection of bone mets from breast cancer (and lung cancer, but not as good for bone mets caused by other types of cancer). https://www.oncologyreviews.org/index.php/or/article/view/321/306
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skyfly, it looks like your Mother was recently dx'd. I'm so sorry. It's normally very easy to get a second opinion at a major teaching hospital. Just call and explain that she's recently dx'd and you want a second opinion. They should take it from there, and usually pretty quickly.
Oh, and here's a list if you need it. These are the places that see the most breast cancer, so have docs who specialize in bc/mbc 24/7. My sister is in cancer research, so she directed me to this list. In my situation, UCLA found things (like additional lesions!) that had been totally overlooked by my local surgeon.
https://www.cancer.gov/research/nci-role/cancer-ce...
If your Mother isn't sure she needs a second opinion, this may be helpful.
https://www.breastcancer.org/research-news/value-o...
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Lori, interesting info on the scan differences, thanks!
Candy, I’ve never had a PET and so far seem to have fairly lazy bone mets. It started with a biopsy proven left iliac met at diagnosis and a suspected met to right scapula. Over the past 2 years, lesions are noted in the left scapula, a sclerotic focus in T7 and stable lesion on L1. There has always been some confusion with my bones mets about what is and isn’t a true met but they’re minimal and cause no pain, so I focus on the brain instead.
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Princess fluffy britches - I also have a local MO in Atlanta and fly to MD for a second opinion. It has been great. I get 2 perspectives and feel like I'm doing all I can. My local M O is cool with it.. He even gave his cell number to my MD MO... I generally choose all treatments in MD after my recurrence 2 yrs back. Now, I'm going back to MD next week for radiation on my spine.. Insurance is also fine with it.. Truly blessed in that respect.
For my first appt with MD, I just called them, they asked for all my scans etc, which my local hospital released to them.
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LoriCA-
Thanks for the explanation!!!! My insurance denied PET unless my scheduled CT's shows new concerns, so I cannot get a PET to check on status of bone mets. So.... I guess I will have to be happy with bone scan. I am concerned about osteolytic lesion shown on first PET 1 year ago because 'swiss cheese' bone seems worse than sclerotic, thicker bone. Maybe it is not worse, just seems like it would be--more chance of fracture/failure. I know monitoring the liver mets is VERY important, but it seems to me like we are not watching my bone mets as well.
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Candy - check with your MO about a declined PET scan, I also got a declined PET and my MO worked it out with the insurance..I think they have to just say that they are concerned (not sure) and want a PET..
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Candy678-- I see that you have mixed ILC/IDC...PET is notoriously POOR at detecting lobular mets-- lobular cancer cells are not as reliant on glucose for their metabolism and do not uptake the contrast very well, and frequently lobular mets are missed on PET. CT and MRI (especially for liver) is typically MUCH better at detecting lobular mets, although in general lobular soft tissue mets are not as easy to detect on scans as are IDC mets, regardless of the scan type. Lobular bone and bone marrow lesions are different and do tend to be detected on CT, MRI and bone scans...although these are gross generalizations and any individual experience can vary greatly... but lobular is very sneaky and difficult to detect.
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Thank you so much! My onc said that when they drew spinal fluid from reservoir in my head, they said there were no cancer cells in there. She said good news for today. I go for a bone biopsy next week . Methatrexate 2x a week. I will finally be able to know my er/pr her2 after that. I am enjoying everyday. Prayers sent! Ilene0
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good morning everyone!
I had my monthly Onco visit yesterday and with that my monthly Lupron injection and also my every three months Xygeva injection.
I decided to try the Claritin with the xygeva as I have read people on these boards find it helpful to take to decrease the SEs of the xygeva. I think it made me pass out and sleep very well last night. Does anyone else get sleepy with the Claritin?
Thanks!
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Utopria-
When the PET was denied by the insurance, my MO filed an appeal-- I asked for it. She did a phone thing with the doc with the insurance company. Still denied. I don't really understand it all and of course was not privy to the phone conversation. I hate that the insurance company has the final say. I drive by the hospital and see the mobile PET scanner parked there and think " I wonder who they did allow to have the test". I think it is stupid we have the technology with these scans-- CT, MRI, PET, etc-- but picky on who gets to use the technology.
EV11-
Thanks for the imput. Scary that the cancer is so sneaky. I could then have all the testing in the world and still miss something growing quietly.
Bone scan scheduled for Oct 26. We shall see.....
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