Bone Mets Thread
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Hello ladies been a while also since I’ve posted here. So many new ladies sadly... and I’m about six pages behind. Z I hope you are well reading the last few posts has me worried. Okay going to catch up here soon so I can possibly contribute something of value lol.
Wendy
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Hi:
I'm newly diagnosed after 8 years clean with mets in my left humerus at T10, T11, L2 and L4. I am also in a sling following removal of a radiation induced sarcoma in my right shoulder/scapula. That surgery is was 12/1/17 and I'm in the sling for a year. I had surgery 2/13/18 to stabilize a pathological fracture in my left shoulder which is how we found the metastatic mess. I have been doing contortions for months to compensate for the right arm and now... 5000 roll ups later...(thank god for Pilates), I am doing even more because I can't use either arm to get out of bed or chairs. On to the pain question... i was taking 2mg of dilaudid and doing fine but this weird moving around Has aggravated my flank..... not at the mets, off to the side in the squishy part, but so sharp it takes my breath away. Onc switched me to 12mcg fentanyl patch as she figures the pain iscancer not musculoskeletal. Been on it about 20 hours now, still need the dilaudid right now... I guess my question is how bad can these things hurt and is this the kind of thing that happens sometimes?
Thanks,
Mimi
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Hello gkbuser, I saw the answers but only just now found your question where you asked how most of us found out it was in our bones. For me I had only distant node and skin involvement at first, and I was put on Afinitor/Aromasine. But after ten months of that, the skin mets were really flaming, so my oncologist began me on Ibrance and ordered the PET scan. The PET showed clear bone mets but not wide-spread. Three months later new oncologist did another control with another PET, plus a CT scan and an MRI - which showed the bone progression all through the spine and neck I guess and in the ribs, plus tons of lymph nodes lit up all over the place. But there was no pain associated with the bone mets. Or, not any pain I could distinguish from regular sciatica pain. To make things confusing, during part of the time I was on Afinitor, I had bone, joint, and tendon pain absolutely all over and was on all kinds of pain killers; I was sure they would find progression in my bones, but during this time of pain, I had a scan showing NED. I never believed this supposed good news, because the supposed NED totally ignored my perceptions of skin mets flaming over my chest as well as my pain. But the pain diminished, and while I was on Ibrance it went away completely. Now I have absolutely nothing to complain about, except a dull ache when I get in bed that makes it sometimes very hard to fall asleep. I pray it will remain this tolerable. I might add I am taking 10mg of paroxatine (paxil) to help with anxiety, and I think it may be what made all that pain go away in the first place.
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Chef47 will be thinking of you over those next weeks. I hope you will make a full recovery. My surgeon and Oncologist communicate but I have also,been told my intestine is in the way (would,have thought they could shove that aside lol). Look,forward to hearing how you get on xx
I had put hip pain down to arthritis, over use from exercise. Tumor marker showed something wrong Oct 16, leading to stage iv dx MBC , tumour in hip also liver mets. Doing well now I thin
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I had radiation to my sternum on 1/25. After about a week, I started getting a red rash in the area which has gotten worse with time. Any advice on radiation burn and how to care for it would be very welcome.
>Z<
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zorovka, i got the rash too. My rad onc doctor told me to put over the counter hydrocortisone cream mixed with eucerin cream on it. It got better in 2 -3 weeks after I fnished radiation.
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zorovka, i got the rash too. My rad onc doctor told me to put over the counter hydrocortisone cream mixed with eucerin cream on it. It got better in 2 -3 weeks after I fnished radiation.
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Thank you animal crackers. I appreciate you using your experience to help others.
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Zarovka,
Cortisone cream does work well, as the others have stated. I also like to use straight aloe from the leaf, as it was cooling. One whole leaf would last about a week, as I would smear it on, then wrap the leaf and put it in the frig.
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Thank you amaratha. I hope you continue to feel ok and pain under control.
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Regarding the bone mets pain: before my diagnosis, I assumed that I simply had some run of the mill back pain and that a Chiropractor was the solution. They found my rib mets when doing a breast MRI shortly after my BC diagnosis. Then they did a full spine MRI and all the pieces of pain in the past fell into place. "That's why my back hurts!"
My bone mets were shrunk by DD AC-T to the point that they don't hurt anymore. Interestingly, they found a new met in my femur. This one only hurts after a Zometa infusion. Anyone else have that? I didn't even know it was there until the scan. Once again, thinking back to previous Zometa's, I asked my MO if the pain in my femur was in my imagination, or if it was related to Zometa. She indicated that several of her patients have the same experience. Some pain for a few days or few weeks after Zometa, then nothing.
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Midwest - I experience the same thing. Pain - I would describe it as like being stabbed by little tiny knives, in various parts where I have mets (but also in bones that I don't have mets, at least no mets as far as I know). This usually lasts for about a day, and then it is gone. It was quite bad the first infusion, but has since really tapered off. I had my 3rd infusion (once every 3 months) and the pain was really minor.
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Midwest_Laura - I checked under abbreviations and still cannot figure out DD AC-T to shrink bone mets, what is that please? I was just found to have 1 small met on my right iliac so have been prescribed 125 mg Ibrance, (last pill of first cycle taken last night, so far so good!) along with the Femara which I started July 1, 2017 right after my radiation. I see my MO Thursday after my Wednesday bloodwork, so is DD AC-T something to ask about? Would love to shrink this
Thank you. These Forums are amazing! J0 -
DD AC-T is the big guns chemo. Dose Dense (every 2 weeks instead of every 3) of Adriamycin and Cytoxin followed by DD Taxol.
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I wanted to let you all know that my sweet friend, Joan (JFV) has been moved into hospice this week. I know she has been somewhat active in this group recently and I thought you would want to know.
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Sherry,
Thank you for letting us know. My prayers will be with Joan and her family, and also with you.
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Sherry I hate hesrling that about Joan. Please know I’m praying for her
Bab
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My thoughts are with Joan today.
>Z<
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Sending Joan prayers today.
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Thinking of Joan today as well, sending strong thoughts and caring wishes of pain free time without worry. Gentle hugs ~M~
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Thanks for letting us know, Sherry. Sending up prayers of comfort and peace to Joan and her family.
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My left shoulder hurts every day. Very painful. This has been going on for about 3 months. Some days, when the pain is really bad, it “wraps around” to include my armpit and the front of my shoulder. My onc doesn't feel it's cancer related, but I’m worried.
I should also mention that my mbc dx included numerous lymph nodes in the axillary, supra and sub-clavicular areas. The pain is really deep, and although I almost attributed it to the weather, we’ve had beautiful weather for the last week, and the pain persists. Advil and massage help temporarily.
Anyone else have this type of pain? How did it turn out
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Oh I'm so so sorry about Aurora. This horrible disease is the pits, so cruel.
This has strengthened my resolve to live my life as well and for as long as I can.
Lita, darling I noticed your comment. I'm sorry this has hit close to home. Sending you a hug
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Sherry, best love to Joan and to you. Be strong for her.
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just asking opinions, my mets are in femur, pelvis, but for last few weeks I am suffering what I can only describe as nerve pain in that leg, numbness, especially around my knee. Onc said just to up the Gabapentin. It's not really helping, then had my shot of denosumab the other day. Very annoying, uncomfortable all the time. Anyone else experiencing anything like this?
Sorry to read about your friend Joan
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swess, I had right shoulder pain for about 4 months (I was afraid to seek treatment honestly because I was afraid it would be cancer, but finally I couldn't take it any more) and finally sought treatment. My radiation MD offered a sports medicine consult to discuss a steroid shot vs physical therapy. I decided to try the therapy first as I figured I could always get the shot if PT didn't work. The pain was bad and I didn't have full use of my arm because of it. I started reading and googling. I was terrified the whole time it was really bone mets. I finished 6 1/2 weeks of PT which got it about 75% better then asked for the sports medicine consult. The MD there did an MRI prior to the cortisone shot to be sure that nothing else was going on. I was so anxious during that time! It showed inflammation and degenerative changes probably from age. I am 52. I worried for nothing. Got a steroid shot and it is completely better now. I was a little afraid to get the shot as I had 2 lymph nodes removed and wondered about lymph edema. MD was not worried about that. He said they don't see much of that anymore and that the pain relief was the higher priority. Shoulders can take a LONG time to get better. For me it was like a total of 6 months. I think yours will turn out fine too. Keep us informed.
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gkbuser, thank you, thank you, thank you! I feel better just knowing yours turned out to be okay. now I can believe itmay be something else.
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swess, your welcome! 💚
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Thinking of Aurora's family and Joan right now. This disease robs us of the best of the best. It stinks on an immeasurable scale.
love to all, MJH
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Midwest Laura - I had my first Zometa infusion and had horrible joint pain. It was like every week area in my body was painful - especially my left knee that I had surgery on years ago. It was so bad I could hardly walk to the bathroom and needed a cane to get around. Also had fever and flu symptoms. Took me 4-5 days to get back to normal. Really worried about my next infusion.
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