Bone Mets Thread
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I'll be getting radiation to L5 and the left pelvic girdle for pain. Nothing is helping me with pain control so the RO thinks radiation will help. I hope so. Not looking forward to the pain due to inflammation post radiation!
MO stopped chemo for a couple of sessions so my bone marrow recovers. Right now, my WBC, Hb and platelets are very low. I have heard that radiation to the spine can affect the bone marrow.
Any advice from your radiation experience would be helpful. Yes, I am freaking out !
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Hi S3K5,
I have had several radiation treatments over the last five years to deal with bone pain and associated nerve issues and have had very good results every time. The side effects of the radiation have been minimal and quickly subsided. With my right hip I had some issues with my female bits as that area was caught in the beam and is pretty sensitive. It was quite remarkable how quickly that manifested itself - I wondered if I could walk to the car! But it only lasted a short time. The worst was my c-spine as it knocked out my sense of taste for about six weeks.
With the lumbar spine the radiation tech mentioned that I might have skin irritation on my back - the skin is very thin there. It was a bit funny as I started to subconsciously rub on the way out the door. She stopped me, told me to come back and put some cream on… it’s that quick with me. But again, it didn’t last and the results were so worth it.
Hope it all goes well and you get brilliant results.
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Artrititist was found as well as Mets when I was diagnosed I have now got an appointment with a rheumatologist. I am tempted to cancel because it would be a long day with travel and everything, I do bone scans already and the oncologist has discussed arthritis with me already and asked that I lose a bit of weight.
Am I being silly not going?
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it's not silly to go if you have pain. If your pain was a combo of cancer and arthritis it can be confusing. Last spring I herniated a disc in back. Went to pain management dr that assumed I wanted to take care of the arthritis in my neck with little said about back. I didn't even k on I had arthritis in my neck. Oncoming mentioned my arthritis after each scan but never said where it was. I had no idea.
What I'm saying Sunnidays, is be sure dr addresses what's really bothering you.
I ended up getting 3 epidural that helped with the pain. Now I wonder if those shots didn't contribute to early stage osteonecrosis of the jaw. Maybe not a good combo with the xgeva I've been taking.
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S3K5 - I had radiation to my pelvic area because I had terrible pain. It was everyday for 5 days. The following 6-8 weeks, I noticed improvement in my pain and increased range of motion in my gait. I am forever grateful that I was able to get radiation. I went from having trouble walking very far and trouble even driving the car 25 minutes, to being able to walk great distances and no problem driving. So grateful! Now for side effects of radiation....the problem is that at the same time, I started Ibrance and Letrozole so I don't know if it was radiation or the drugs (or both) that caused my constipation, nausea, lymphedema in my legs, and diarrhea. But the good news is that those side effects were relatively short-lived.
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Sadiesservant and GoKale4320 , thank you for your response. It's good to know that the side effects were short-lived. I'll be getting radiation to the lumbar area, so some skin irritation is to be expected. Would you recommend any specific cream that helped you? I have Aquaphor and another cream called "PhysAssist oncology recovery cream" . I don't know if either of these is sufficient.
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Hmmm… it was so long ago now that I don’t recall what I used. It was most likely the Udderly Cream that I had on hand from being on Capecitabine. Most of my bone pain was in the first couple of years when Arimidex failed. Having more trouble again now which is why I am suspicious about Vinorelbine
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I put aloe right away after radiation and then aquaphor consistently throughout the day. In areas with creases (under my breast, at the groin) the skin peeled, and the doctor gave me silvadine. Everything healed okay. Other than the skin issues, my main symptom was fatigue, which set in a couple weeks in.
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I know when I had radiation for my initial dx I used medicated honey patches to soothe skin irritation and peeling. Perhaps your radiation center can offer you these
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Medicated honey patches - wow, I have never heard of these. Sounds like a great homeopathic solution.
I thought I responded about the skin irritation topic earlier, but I don't see it. So forgive me if I am repeating myself ...I did not have skin irritation for my rads to the pelvic region and I think it's because I only had rads for 5 days. My first diagnosis, I had rads for 26 days or so, and just used aquaphor a couple times a day.
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I also did not have skin irritation with the exception of the lumbar spine radiation. As I mentioned, I think it has to do with how thin the skin is in that portion of our bodies.
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Oops! I meant medical-grade honey patches. I had 32 rounds with my initial dx and had a lot of irritation and peeling. The honey was amazing and soothed the area. They were big squares so I could cut them to fit the area.
But I hope you don’t even need these
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I had 2 sets of radiation in 2018 - first to the lumbar area where my L1 had been destroyed by tumor and was replaced with a metal cage then a few months later after a couple interventional radiology procedures to the upper spine.
Skin was not affected however my throat was zapped during the 2nd round of treatments making it sore. It was easier to consume cold things during the healing phase. Since swallowing regular food hurt so much I managed to lose some weight.
Because lymphedema limits vein access to one arm and the antecubital area on the other developed scar tissue during my 2+ weeks of hospitalization, I am now a “hard stick" therefore Zometa/PET scan interval is stretched to 4 months or 3 times a year.
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I had radiation to my T10 and C7 following surgery to stabilize my C7. I was also in a neck brace for a few months. I had skin irritation on my chest (under the neck brace) and on my back (under the bottom edge of the neck brace and extending a couple inches down my back). I’m not sure if the irritation was a direct result of the neck brace, the radiation, or both. I expect it was from the radiation and further irritated by the neck brace. I made sure that I kept the skin well hydrated by applying a 72 hour facial moisturizer that I had on hand a few times a day (Moisture Surge by Clinique). It cleared up after a couple weeks and was only mildly itchy.
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I had another PET-CT today. In September, there was a new site of low activity (4ish) that didn't show up on the CT. My MO wasn't concerned. Today it was 13ish though it still doesn't show up on the CT.
This is bad, right? Is the Verzenio/Fulvestrant not working?
The original met has gone down from 31 to 4 (after radiation) to 3.
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Star - I was not given any numbers tied to bone met activity so I don't know what the scale is. But I do remember someone saying that sometimes the bone met can show more activity as it is taking up the powerful meds. So it appears to be troublesome, but really the met is being beaten with the drugs. As for the CT scan not showing anything, I had the same situation. I had a CT 3 months after starting my new drug regimen and it showed great improvement, but 3 months later the PET scan showed new mets. So this time (since I can't have a PET every time), the doctor ordered a bone scan and a CT scan. So I think it might be common for CT scans not to be helpful for bone mets.
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GoKale - Sorry if I missed this earlier in the thread. I'm curious why you're not able to have a PET scan every time.
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Kris - I think I can't have a PET every time because of insurance. I have regular insurance through my employer.
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That's awful if you really need a PET instead and can't get it because of insurance. Maybe it has something to do with how often your MO wants scans?
I was getting PET scans every two months but it's now every three.
I was concerned you couldn't get PET scans because of some adverse effect for you physically from them. I'm glad that's not the case at least.
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thanks, Gokale. It's so frustrating to go through these scans and still not know whether the treatment is working. I haven't heard from my MO yet. Not sure if the increased pet activity is cause to change treatment or whether the lack of a lesion on ct is reason to continue. I'll keep you all posted. Trying not to get too overwhelmed, but I definitely didn't get much sleep.
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pet scans expose you to considerably more radiation than ct so i was told there has to be a good reason to use them - my dr said if they can use another modality she prefers to not use pet, esp as regular monitoring
They're also more expensive so insurance/public health systems won't always cover
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Hi All, I thought I would chime in as I find it interesting how different we all are. In my case, bone scans are useless. They never show much of anything but my CT scan... whoa... mets everywhere!
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I agree. It's interesting how we're all so different. I've heard others refer to bone scans but I've never had one.
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When I was first diagnosed as 3a four years ago, I only had bone scans or Cts or x-rays. But the pet has been used now three times since my stage 4 diagnosis.
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For those of you that have had a bone scan, how long does it take to get results? I can have a CT scan and see my doctor the next day and he will have results. But I was told with a bone scan it takes a week to get results and read?! Could that be right? How are we in 2021 and it takes a week to get the information?
My oncologist also does not order PET scans. He said insurance companies don't like to pay for them unless they really need to. So we are doing CT scans for now but bc I have never had a bone scan he wants me to do one. Now I am wondering from what some other ladies are saying if it is worth it. But he said that a CT only goes to the pelvic area, and he wants to have a whole body picture. Also, for those that have had a bone scan, does the injection ever upset your stomach or give you diarrhea? I get diarrhea from CT scans and the stuff I have to drink.
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AnnE16, the bone scan contrast has never upset my stomach. Just be warned that the bone scan procedure takes a long time - first they inject the nuclear isotope, then you hang around and wait for 1.5-2 hrs until the injection gets into the bone. Then the scan itself is about 40 min. The machine moves very close to you and is very slow. Goes from head to toe so it sees all your bones.
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Scans are so weird! My CT scan showed bone mets but the PET report says they didn't see anything. I've never had a bone scan so maybe that's next? Hopefully tomorrow I'll have more information but for now we're assuming I have a bone met. I'm not sure which scan will be my "regular" one if they disagree with each other. I have no problems with a PET scan but I had a bad reaction to the contrast on the CT scan so I'm hoping never to have one of those again. It took weeks for my skin to go back to normal!
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I only had one PET scan and that was after chemo but before radiation. As I recall, it was to see where all the cancer had spread and to help the radiation oncologist get a game plan. Since then my scans have been both CT and bone scans and I had both of those the week of Thanksgiving. It really took about the same time to get both results back.
PET scans expose us to more radiation than a CT scan so that is part of why they don't do them routinely for most besides the expense and insurance issues. I found this on cancer.org: A CT scan of the abdomen (belly) and pelvis exposes a person to about 10 mSv. A PET/CT exposes you to about 25 mSv of radiation. This is equal to about 8 years of average background radiation exposure.
My scan frequency was reduced after getting to about a year at NEAD to now only getting scanned every 6 months and that is specifically to reduce the radiation I am exposed to.
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I've only had two PETs so far, one after my initial diagnosis five years ago and one last month. I don't think the CT scan showed all of my pleural/lymph mets though so I may not be able to avoid more PETs even with the extra radiation.
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Parakeet - I have a severe allergy to the contrast (iodine) and have to do a pre scan protocol every time that my MO has me do and it has kept me safe and able to do the CT scans with the iodine. The protocol is:
- Prednisone: 50 mg by mouth at 13 hours, 7 hours, and 1 hour before contrast media injection; and
- Diphenhydramine (Benadryl®): 50 mg by mouth 1 hour before contrast medium
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