Bone Mets Thread
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Hi Nancy and Olma!
Yes, it seems counter-intuitive, but cancer cells are actually more fragile than normal cells and therefore more easily killed by high fever or, as In her case, a high fever and a rampaging out of control immune system boosted by immunotherapy- plus her cancer cells by that time were triple negative, so presumably more sensitive to the immunotherapy. Because of their vulnerability, the cancer cells mark themselves with proteins on the surface to make the immune cells think they are normal and not attack them, so the hunt is on for drugs that unmask the cancer and then add in immunotherapy to boost the immune system.
It was just amazing to read Barbara Bigelow's blog in real-time as her story was developing. She was diagnosed just a few months before me, and for quite awhile hers was the only blog I followed (that was before finding this site). I felt that the ER docs would be able to save her, and that the fever had surely fried the cancer (unfortunately it also wiped out her thyroid and adrenals) but steadied myself before reading some of those blogs, knowing that she might very well not have made it. But yeah, at this point she is probably cured, just like Judy Perkins. We just need the right combo of drug-immunotherapy or vaccine-immunotherapy to give us longer and longer remissions and buy more time to a cure or real chronic condition. She still lobbies and advocates for MBC- just an amazing person!
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JSniffs, I have had a crazy week of scans and referrals and never got the email notification on this thread, but thank you for your post that said:
"@pesky904 - So I received the results of my bone scan and CT scan. The bone scan has decreased uptake in the area of my one bone met, and the CT scan says, "new sclerosis of the lytic disease likely reflects healing." I haven't spoken to my MO yet, but I'm assuming that things are still in the process of healing and not quite healed completely (which is what you asked). Maybe someone else can chime in?"
It's really too bad there's no required standard language for radiology reports, because what's written on yours sure sounds like the description of my lesion (central lucency with a sclerotic rim), but who knows. I had uptake on my bone scan, but nothing previous to compare it to, so who knows if there was increased uptake previously and/or if it was more or less uptake on this scan.
The lesion is on my proximal femur and my MO said it's very likely it'll need to be removed (??) Not looking forward to hip surgery, especially since I'm in the process of trying to rebuild my life from the ground up and don't even currently have a job or a stable place to live. I've been referred to orthopedic oncology so we'll see what they say.
Have you seen your MO yet? Did they say that once the bone met is completely healed, it will not be visible on a scan, or it will show up as an entirely sclerotic area?
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pesky - I haven't seen my MO yet...I have an appt next week. I think she said previously that it will always have "sclerotic" description in the CT if it has healed. In the bone scan, the uptake should go away...eventually...hopefully.
I have radiation therapy scheduled later this month to blast away whatever remains of the tumor. That should hopefully take care of the bone scan. Maybe that's an option for you??
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Cure-ious
thank you son much for your post! I had not heard of Barbara, but I will be sure to look her up. I am so grateful for all who have done clinical trials and made current treatment possible. A friend of mine recently told me about a woman (I’m not sure of the type of cancer) who was injected with high doses of measles and after enduring and surviving severe fevers and other difficult symptoms, no trace of cancer could be found.
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Who of you have had radiation to mets on the spine? After 8 years on Arimidex, I had progression to the T1 vertebrae in March. Was switched to Ibrance/Aromasin and now after 5 months, scan shows progression to T5 vertebrae. Onc wants me to go to a Verzenio/Aromasin combo. She doesn’t want to radiate as I’m not having pain. Says she wants to save radiation for later if needed. Would like to hear your experiences, please.
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DivineMrsM,
Hello fellow Buckeye! My radiation dr said the same thing, that I was eligible for radiation (I just had 10 total over 2 weeks) because of my pretty severe back pain. He told me it is difficult to radiate the same area twice so they typically wait until it impacts your functioning/quality of life. I had to see surgeon first to get the ok for radiation due to a compression fracture. Rads worked great for my pain but we’ll see how things look on scans next week. I hope your new combo works wonders for you!
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Divine, you are amazing- I had not noticed that you have been on AIs for almost NINE years following the mets diagnosis- are you kidding?!!! And still bone-only? Incredible.
It could be that your onc wants to do it stepwise, ie, first see if adding a stronger CDK4,6 does the trick, and if not then switch the Femara to Faslodex.She may feel that the progression is so slight that she has the luxury of time to try it that way. However there doesn't seem to be a strong reason to 'save' Faslodex for future use, given that it can be used in multiple combinations and the stronger SERDs are doing well in clinical trials- once approved, you would not be having injections anymore. And its not unreasonable after eight years of AI that you would need to move to Faslodex in order to get the full benefit of the CDK4,6 inhibitor (given that you have only been on Ibrance a much shorter time, it may well still be working). So, you could say switch to Faslodex plus Ibrance first, and then if that is not enough, swap out the Ibrance for Verzenio.
I wonder if a liquid biopsy would show whether a significant number of cancer cells have developed a PI3K mutation, in which case Piqray and Faslodex might be warranted? Of course, it might be that your progression is so slight that there is no point for a liquid biopsy because the progression is such a small number of cells. I guess I would either go for a second opinion, or at least probe her for a more satisfying answer...
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My Guardant 360 liquid biopsy did not give me and my onc much helpful data, just a little hint. Most prior mutations said Not Detected. The medical liaison said the reason could be not much active cancer, only two lesions in liver not shedding much DNA. (Ok bye. I don’t have one mets.)
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DivineMrsM, about radiation to spine.
I had the met on my L1 vertebrae radiated in late May / early June. I had been NED, then the L1 lit up on PET in early May. Size was a little over 1 cm. I am also asymptomatic. My MO immediately suggested radiation and said she would prefer to save any change tosystemic treatment for a time when it may be needed more.
I am HER2++ so not sure if that makes a difference. She felt that my current regimen of Herceptin, Perjeta and Arimidex was doing a good job at keeping everything else in check. She didn't even want to change the AI at this time.
She did suggest I go back to more frequent Xgeva shots, I had been on quarterly for (I think) 9 months. So we're doing them every 6 weeks now. She mentioned possibly switching to Zometa if necessary, too.
Cyberknife was a possibility but it didn't look like insurance would cover it, so I went with EBRT. 10 sessions.
Here is a thread I started on this topic back in May, there are few responses from others here:
https://community.breastcancer.org/forum/8/topics/871507?page=2#post_5426476
PS - I have not had my post-radiation scan, I'll probably be doing it the end of September. Hope whatever you and your doc decide, it does the job for you!
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Hi DivineMrsM.
I have had three shots of radiation at this point, all to deal with lower back (lumbar and sacrum) and/or hip issues. The first was in response to a bout of severe sciatica which made it almost impossible for me to function in the mornings. (I joked that it was the only time in my life I wished I was a man. Sitting down on the toilet in the morning was extraordinary!) the radiation was a god send providing almost instant relief.
I’ve also had quite a bit of trouble with my hip - not completely alleviated by the rads but much improved.
My MO has only ever referred me to my RO when I had pain and, while my RO always tells me she is there if I need her it’s clear the intent of the treatment is symptom alleviation not systemic treatment.
Hope this answers your questions. If not PM me as I’m a bit sporadic on the board these days.
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Divine, It's been a while back but I did have IMRT to T8 at the same time as to axilla, chestwall, subclavicle area at 25 zaps each. This was after chemo and surgery and I was already NED with back pain already subdued by chemo. They told me they were just cleaning up. These days they can use much higher doses of radiation with fewer zaps. There are risks to radiation, however, so some doctors prefer other options if available. There may be a cost issue as well.
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Divine- You have had a lot of good recommendations come your way. All I can add is --go for the 2nd opinion. I have not had progression yet, but I have mentioned to my MO that when it happens I will probably seek another opinion/look at clinical trials at a larger cancer facility. She was totally ok with that. She knows that at our facility we do not have access to the clinical trials. I think any MO worth anything would not be offended with another opinion and see what else is out there. And true, you may get validation that what your MO is saying is the good way to go. Don't worry about hurting your MO's feelings, this is YOUR life.
Question for the group--- what do you all use for pain control. I have RA, a bad lower back from years of work, AI use, and the bone mets. The bone mets is in the spine and pelvis. My last scan shows bone mets are "stable"--sclerotic and osseous in scan description. But I have a lot of pain, everywhere- elbows, knees, hips, and all down the spine (neck to butt), and even my feet (probably the AI use there). I use Tylenol Arthritis and heating pads. Not helping much. I was told to stay away from Advil and Aleve due to potential stomach issues. And I am on daily low dose aspirin for blood clotting issue. I wondered about Celebrex (anti inflammatory) but read not to use with aspirin for potential bleeding issue. My MO and rheumy both have recommended Tylenol only. What avenue should I pursue or recommend to my docs??? The pain is really getting on my nerves. Not sleeping well due to it and hobbling around during the day.
Just want to get some ideas from you all. Then I can look into each one. My MO has never recommended radiation--I don't even know if we do that in my area (rural).
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Divine, I'm sorry you've had progression. Here is my experience with radiation to the spine. I was dx de novo via PET with a met on T11, asymptomatic. My MO wanted to treat me aggressively and I agreed, so after chemo and before surgery, she recommended radiation to the T11 met along with a second one on my left illiac crest. I had 10 sessions over two weeks without any skin irritation or other SEs. That was in January 2016, and so far, I'm still NEAD. Hugs and best wishes.
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JSniffs, will be very interested to hear about your appointment with your MO.
My lesion initially presented with a sclerotic rim - I was told that in response to a lytic lesion (lucency), the bone tries to produce new bone around it (the sclerotic rim) to keep it from spreading, which it does more easily in slow growing tumors.
But mine is still lighting up on the bone and PET scans and since my initial MO was not thorough to begin with, we don't have anything to compare it to. So no way to know if it stopped lighting up (or growing) and now has started again because I've been off Xeloda for several months. At the time of the bone scan, I'd been off Xeloda for about 4 months, off for 5 months at the PET scan. Had an MRI a few weeks after the PET scan and still no answers, but will hopefully get better insight after I see the orthopedic oncologist next week.
I'd be interested in what a fully healed lytic met looks like, if it should appear entirely sclerotic, no lucency at all, and doesn't light up at all on a scan.
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computer got hacked.staying off for a while
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That's a bummer, Lita, about your computer and thanks for the notice. Hugs.
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candy-678, I can totally relate to what you are going through even though I have not been diagnosed with RA. I guess to have that along with bone mets makes it challenging to get the pain under control. I was also told that my bone mets are 'sclerotic' and 'stable'. As my neurologist explained, it doesn't mean that the pain can be any less. It just means that the metastatic spots on the bones are not growing.
I have been taking long acting (ER) Tramadol 200 and Tramadol 100 since I cannot tolerate any strong opiods like morphine, etc. Tramadol and Tylenol helps a lot in keeping the pain under control. I cannot take ibuprofen or any drugs in this class either due to stomach ulcer. I have extensive bone mets in the spine (C5 to L2, ileum, pelvic bones, etc). The worst pain is at C7-T1 and L5, where I got radiation treatments during the last 3 years. They cannot do any more radiation since I have reached a life time limit of how much radiation I could receive. So my pain specialist is trying other ways to relieve my pain - yesterday I had a 'nerve block' procedure to C7 area wherein he injects steroids in the spine area. I am hoping this will relieve some of my pain. I guess this needs to be repeated every 2-3 weeks (3x total) in order to achieve long term pain relief. If this works, I will get it for my lower back too.
Since each one is different, you may want to talk to a pain specialist (if available) who treats cancer patients, since they have specialized training in getting all kinds of pain under control. Are you able to tolerate any opiods? If so, you have a lot of options from low dose to long acting opiods. I heard this is the best in keeping the pain under control. If not, extended release Tramadol is a good option that you could try. I hope your pain gets under control - it really helps in QOL.
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I also have constant pain from a radiated bone lesion in my sacrum. The initial radiation did help a lot (I was walking with a cane before it), but I still had pain...mainly sciatic pain. The doctor recommended that he do an additional 5 treatments and again it did help a little more. I still have pretty bad sciatic pain though and nothing takes it completely away, not to mention all my aches and pains elsewhere from the drugs. My exercise is very limited which bothers me since I know it's a major need for overall good health, but I can't even take a shower without being in pain. I don't like the way opioids make me feel so I don't take those. I do take Advil and I use a high CBD strain of medical marijuana which I mainly use at night to sleep. Any suggestions from anyone who has similar pain?
ETA...the radiation oncologist did suggest that I could try radiofrequency ablation (RFA), but that procedure worries me some since it isn't guaranteed and isn't without risk.
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Hi. I’m barging in here in a panic because I’m having some pretty bad pain near my clavicle and I’m afraid it could be a first-time bone met. My liver is also hurting and I know that is a tumor. What meds does one take for bone met pain? I have several options on hand, both otc and leftover prescriptions. Suggestions?
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ShetlandPony,
Sorry you are in such pain and fingers crossed that there is a non-cancer cause behind it. Norco (hydrocodone/acetaminophen) worked for me until I was able to be radiated but my dr did have to increase the dose from 5/325 to 10/325 because my back pain got worse due to a compression fracture. Hope you find something to bring pain relief soon!
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Shetland, sorry to hear about your pain...I know this is going to sound simplistic BUT nothing relieves my widespread bone cancer pain better than 400mg of Magnesium Citrate...I take it in the morning with breakfast and another 400mg at night with the calcium....
when it gets unbearable, I take a Tylenol.
I had severe pain in my right arm and shoulder that was rendering my arm useless, and it all stopped with the magnesium, the pain and dullness returnwhen I don't take it
I also wear a 25mg fentanyl patch, but it's ineffective to stop my lower back pain when I stand and walk for more than an hour. That's due to a botched khyphoplasty when success was declared after 1mm lift.
The patches have no SE to speak of...but the oxicodone makes me sleepy....
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Everyone posting seems so knowledgeable and seems to have had so much more in depth conversations with their MO.
I have triple neg extensive bone Mets and it has been describe as aggressive. I have the PI3K mutation so I am able to get immunotherapy along with chemo. I had radiation to my spine, sacrum and left hip for severe pain prior to chemo which was very effective for pain. I have asked about follow up scans during chemo and my MO has said I may not get them because they are notoriously inconclusive and you often cant tell the difference between healed lesions vs growing lesions? Does that sound right? When you are describing your bone tumors where does this info come from
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Paulinek- the description of the bone lesions come from scans. Most people who post here are getting regular scans, either PET, or CT and bone scans. The scans are not only to monitor existing lesions but to see if any new ones develop in other organs. Are you sure the doc said you would not be getting scans at all? OrMaybe I misunderstood.....
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Shetland, I'm no help with the pain question (only had fentanyl and morphine for esophageal pain) but know that I am thinking of you. I had strong pain in met sites early on Halaven and took Tylenol, which eased it some. It went away in a couple of days and now I'd like to think it was the tx attacking the cancer. I have scans next week so we'll see if that theory holds up.
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JACK5IE, I had RFA done to my cervical mets in 2015 and 2017 and both the times it helped a lot with pain control. The radiation helped me to some extent but not much. RFA procedure does carry some risks since they are frying the nerve roots with radiation but with the right doctor (experienced) it shouldn't be a problem. Again this has been my experience with my doctor. If you have confidence in your dr to do this, then it may be worth it. Good luck!
ShetlandPony sorry about your new pain - hopefully you have found something to get it under control. I have written about my pain control regimen above (with Tramadol) but if you can tolerate opiods, that would be the way to go. Hope you can find answers to what is going on in the clavicle area. Have you reached out to your doctor? Maybe they can prescribe something for the pain.
Frisky, thanks for the tip about Magnesium Citrate. MY GI doctor had suggested this for my constipation. It's good to know that it also works for pain relief (2-in-1!)
Paulinek , regarding monitoring the bone mets, I think your MO is only partially right. When I had only bone mets, I used to get an annual PET scan mostly to check if other soft organs are affected rather than to monitor the bone mets. I have been seeing a neurologist since the time I was diagnosed with spine mets. He monitors my tumors to ensure none of them impinge nearby spinal cord, to prevent emergency situations. For this, he orders MRI every 3-4 months but his emphasis is only to keep an eye on the nervous system/spinal cord. According to him, sclerotic and active bone mets look similar on an MRI. PET and CT scans with dye can differentiate between sclerotic and active disease in the bones, so I am surprised that your MO doesn't want to order any scans. Could you insist on getting a PET scan just so you know that the disease is stable and only confined to bones? What is your chemo regimen now?
Where do you go for treatments in NJ? I live in central Jersey and go to MSK for treatments. My current MO is a little more aggressive in terms of treatment choices than my previous MO who emphasized more on QOL. As others have stated earlier, we should be our own advocate !
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Thank you for replies. So magnesium, Tylenol, norco, tramadol. I'll start with Tylenol. The clavicle pain has been coming and going for over a week. I have an appointment already scheduled with my onc next week because I am starting a Halaven cycle that day. I had a false start before, missed the week #2 infusion because I had a recent fever. I want chemo now!
Any ILC bone metsters, what scan do you use to monitor your bones and why?
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Shetland pony- remember Tylenol can be hard on the liver. Also norco has Tylenol in it also
I’m getting PET scans with FDG to follow bone Mets. My TMs are really high and very predictive re progression so far.
Hope your pain flies away soon.
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S3K5, thanks so much for your reply. It's good to know that RFA helped you. I will think about that option again.
PS...how did you get the poster's name to highlight that way?
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Shetland....I just get a pet with contrast...once in a while they will do an MRI,
when they suspected lesions in the liver and had to conduct a biopsy for example ...
bone mets in my experience are not scrutinized much because they can’t be treated....
unless they will be intervenin in a specific area such as radiation or surgery. Then they will do an MRI...
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When my body aches are strong I like 8-hour Tylenol (also called Arthritis strength Tylenol). It really seems to make a bigger difference than the four hour Tylenol, especially if taken it towards bedtime. Stays in your system longer. I wake up feeling far less achey with the 8 hour stuff. I will take it in the day, too, if need be.
There's also Tylenol PM with something in it to help you sleep (not sure what) if pain is keeping you up or waking you up at night. I haven't taken the PM stuff in years, but am aware that it's an option if I need it.
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