Bone Mets Thread
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So, mine was a bit different. In late March I started having pain in my right shoulder, out of the blue. Typically I can point to some self-inflicted garden injury but in this case nothing to point to and the pain was debilitating. I couldn’t find a comfortable position and it was at its worst at night. Pain in the shoulder but it radiated down my right arm into the elbow and down into the hand, affecting the fourth and fifth fingers. This was suspiciously close to potential problems with the brachial plexus so my MO ordered an MRI (CT was stable for bone mets, progression in the liver). Thankfully the brachial plexus was clear (scary number of nerves in that region) but they found a new lesion in the C7/T1-2 region which was extending into the spinal canal, likely causing the nerve related issues. After struggling with pain meds (nothing provided relief),we found a low dose combination of gabapentin and hydromorphone took care of the pain. I was also put on a pretty high dose of steroid as well to reduce inflammation. (That was my own version of hell. I am very sensitive to steroids and got almost no sleep for weeks! 😳 )
My RO was concerned about potential permanent nerve damage as, apparently, if the nerves are impinged for very long they may never recover. She got me in quite quickly for five rounds of radiation. As I mentioned, very few side effects. Pain was completely under control with the combo of pain meds and steroids. Once I started to dial back the steroids I did have a sore throat although my RO thinks that may have been a coincidence as the sore throat timing was spot on in her view. That only lasted a couple of weeks. I’m now almost completely off the pain meds, no more steroid and any side effects are now likely due to Xeloda.
I would have that pain checked out given that it’s radiating down your arm. Also, I don’t think bone related pain from nerve impingement is likely to improve based on systemic treatment, at least not in my case. I have 100% sclerotic mets so they add bone to the tumour. Even with a good systemic treatment, that bone growth will not disappear without the aid of my amazing RO.
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sadiesservant— thank you!
Definitely don’t want permanent nerve damage, if it can be helped
I have had great results from rads (except when rads messed with intestines as a side thing). My RO is my friend (not literally)
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Sadiesservant, thank you. Because of you and DodgersGirl, I will keep my mind open to the possibility and start educating myself.
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KBL,
I have no experience with radiation but I have been researching it, as I have mets apparently widespread in my spine - Mayo re-read my reports and stated that but I do not know what is active or what is healed, I’ll know more Tuesday and very stressed out.
But as a result in planning ahead and having seen several radiology oncologists, they told me the radiation is not that bad, SBRT is very targeted and will relieve pain. The downside is they typically can not radiate the same site twice, although there are studies that suggest they might be able to do twice but no more. I decided to keep that tool in my tool chest until I am desperate. Much like you, I don’t like taking anything that makes me feel weird. I hear women talk about Fentyl patches, but I use one 500 mg Tylenol and one 200 mg Ibuprofen and a heating pad. If that does not work I wait 4 hours and take (my leftover Norco only 1/2 a pill) and I go to sleep. You might be in way more pain, but I would really say talk to a radiologist oncologist.
I hope you find relief - also, do some stretches maybe that will help. I do like the Physical Therapy idea worth a try. I hope you find something that works for you - pain just zaps the energy out of you.
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I've had radiation twice due to progression - not pain. R hip first- killed the cancer and I was able to stay on Xeloda- my last oral chemo -a month later I had pretty bad pain in the gluteus muscle for several weeks. 6 months late I got radiation to the L hip and sacrum and L humerus (arm bone) I got a blistery rash on the arm and itched for weeks and I got the severe pain in the other gluteus-that lasted 2 months- I am assuming it is radiation damage to the muscle. it calmed the cancer and extended my time on Xeloda- but, I think I would think twice about doing it again- I am finally over the side effects.
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Thank you, DDIL and nkb. I know you do a lot of research, DDIL, and I’m really too busy right now to do a bunch. I won’t be doing any PT until I get an okay from the neurosurgeon. Someone suggested water exercise, but since I’m on Xeloda, I’m thinking the chlorine might make my hands and feet too dry.
I’m glad you’re feeling better, nkb. That’s what I’m nervous about, having something worse happen from radia than the pain I have now.
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Kbl,
I agree on the water therapy it might create a reaction to you being on xeloda. I had a rash from chlorine being on Ibrance. I hope your dr. will come up with a good plan. I did learn from my own back pain episode I had recently we can’t do things we use to be able to do… like bike riding for me.. that’s what caused my back pain.. who knew??? I keep forgetting things changed for me and I need to do things differently.
Keep us posted hugs to you
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Thank you, DDIL. I had cervical and lumbar X-rays today for the neurosurgeon appointment. I am pretty much a mess in my c spine. I have severe degeneration in C4-5 and C6-7 and have a mild slippage of a vertebra in C3 on C4. It also says osteoarthritis. I’m hoping the neurosurgeon can just get me into PT and I can strengthen those areas. Believe it or not, my hips hurt worse. I cleaned the house yesterday and am suffering for it today. I’m trying to figure out how I can not pick up my grandson and do housework. My husband has said he will clean. I think I’m going to have to give up caring how the house looks. He does a good job, but we are never happy with others’ way of doing things. My daughter and SIL plan to take the crib rail off soon, so I won’t have to pick him up anymore to put him in for sleep. That will help. Fudge, I don’t do limitations very well. Ugh.
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Wow, just wow. First thank you all for sharing your stories and concerns. Im so sorry you all have to go through this crap. I've learned so much.
FWIW, radiation was a breeze for me both times, but I am concerned about too much directed to the organs. I dont need more yet. Yay. I'm 5 yrs from dx with no further progression.
I've been in pain 4 days now from gardening. Yes i over did it. Yes, i have arthritis. Ok. Im 66 now. Must pace myself better. But now I'm anxious. Scans are due in 3 weeks anyway and its only 4 days of pain so likely i wont even mention it to PA. Sadie, your story sticks in my mind. It doesnt feel like a bone thing.
speaking of nerves. I got some ultrasound for inflammation of tricep and tennis elbow. It cleared up what was likely a nerve issue that caused pain when arm got cold. I thought it was permanent after 2 years. All better. Now the other shoulder. Go figure.
gailmary
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hi
Thank you kbl, my MRI was awful I hate the heavy metal sounds and motions it creates, my fault for not taking Ativan. As for the results, mets to femoral head, neck and pelvis. I meet with the Rads ONC Monday to discuss radiation to the hips. I have started PT to help anything in that area. Really gentle moves and pointers for not slipping at home.
I'm not a happy girl, I'm on piqray for 3 weeks and my ALK PHOS has risen almost every week. My liver mets that were two I fear are bigger or multiplied. I really want to stay on any medication for longer than 6 wks. This is my third oral med and I'm not sure I'll make it the 6wks. I'll ask the liver mets board but has anyone had alk phos or a tumor marker increased just to see it decrease later like a delayed response?
My bone mets, which are supposed to be lazy, have gone from 4 verts to every single vert over the past 2 meds (4 mos). My MO next step is taxol, which I have had before but hate because it caused a neuropathic itch (gabapentin and then lyrica solved).
THANK GOD ITS FRIDAY
sorry for the rant
tigre
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Damn, el_tigre! That really sucks! I hope PT helps and I hope they find a med that you can stay on for longer than six weeks!
(((hugs)))
Carol
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Kris,
Well the good news is it’s not Mets! But changing how you do things. As women We are guilty of just doing and not thinking of ourselves or the consequences. My husband does help clean. I do a lot of the detail cleaning, like blinds .. stuff that gets overlooked. I also try to do the most I can I feel better moving around and sweating some.
Getting older means arthritis on top of the Mets. I hope PT helps you
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Thank you, DDIL. I’ll keep you posted. My appointment with the neurosurgeon is July 13, but they may be able to get me in next week. If it’s not Monday or Tuesday, I’ll have to wait.
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Hello all,
I usually post on the liver mets thread as that's what was first discovered for my mum and put her in stage IV, but she also has 2 spine mets (th6 and th11). She's currently on Ibrance/Letrazole and doing okay. Her spine mets are stable and the radiologist said "encapsulated" so he feels this med combo is great for her.. however, 3 days ago she developed pain in lumbar spine. It's sharp and only present when she's trying to stand up/sit down and bend forward. When walking, sitting, lying down there's no pain... I'm very afraid this might be a spinal met that went undetected.
She did have an abdominal MRI a month ago, but i don't know if those show lumbar spine? Any advice? What did bone mets feel like for you?
Thankful in advance,
A daughter of a wonderful woman
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I'm so sorry to hear that el_tigre! How frustrating! Hoping the PT gives you some relief and that they can find the combination your body needs.
Daughterof - it kind of depends how far down they went on the abdominal MRI. An abdominal MRI would most likely show T-spine and maybe a few of the lumbar vertebrae but it may miss the lower lumbar spine that would be included in the abdominal/pelvis region. I think it makes a difference if they use contrast also. The MRI's I have had done specifically looking for spinal mets are usually with and without contrast. Look at the report if you can get a copy of it. They should mention any bony area that looks abnormal and may list which vertebrae are in view.
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thank you emac877. They gave me some slight movements that i think will help more mentally then physically. I have a rads consult today for the pelvis.
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daughterof, is it possible her pain is more muscle than the deep bone pain? I started using Voltaren cream again recently and it's made a huge diff because the pain is stiff muscle whacked up by other issue. I also am gently starting some stretch/strength but man, the voltaren is working so well.....
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Emac877, thanks for replying. I contacted her radiologist and he said lumbar spine wasn't recorded but he seriously doubts it's a new met since the two she has showed great response to medications.
Moth, it does seem to be muscular.. she feels a lot better since I gave her a massage, she can bend almost normally and getting up/sitting down doesn't seem to hurt anymore. Glad Voltaren is helping you, I might buy it for mom as well once we return home from Spain.
Thanks for replying and hope you're feeling better ❤️
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I had my second scan last week and there seems to be some confusion! It sounds like all/most of the mets in my chest are either gone or stable but they are reporting a bunch of "tiny osseus metastases" in a bunch of new places but the way it's worded sounds like they were there before, or maybe that's just how it's described? It says "worsening" but they were never mentioned before.
And my oncologist said she is confused too because the CT/PET reports contradict or something, and she's sending them out to be reviewed by Someone Else. Not sure who that is. Ha. But okay.
The report also says all the bone junk is "non-FDG avid" which I thought was good, but maybe not if the spots weren't there before? Could they have popped up after my last scan and then gotten taken out by the treatment? It also calls them all "sclerotic lesions".
So I don't know if this is good or "yikes" news. But I'm glad my pleural effusion has stayed gone!!0 -
parakeetsrule, what a confusing report! I hope the "Someone "Else" can make sense of it!
Carol
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Parakeet, I’m sorry I don’t know what your report means either. But I think I just got some Yikes news.
I’ve been having new lower back pain and some leg pain which felt like a tight hamstring at first, then developed into awful zinging pain at night. I mentioned it to my Clinical Trial nurse who is my contact person and he relayed to the Trial Doctor, who is also my regular oncologist. They got me a stat MRI appt for today and the report is up on my portal. Worsening lesions at L5 and Sacral something. From 2 cm to 3 cm. Other notes are various locations of disc bulge with facet hypertrophy (which is something like arthritis). I’ve had lots of issues since before my MBC diagnosis so it wasn’t all new or shocking. For anyone who’s had radiation to spinal lesions, can they do multiple lesions? Maybe one at a time? I’ve already had a big issue with L1 spinal compression which led to surgical excision and rods and pins and delay of treatment. I’m hoping there’s some possibility to stop the new growth. 😳. Yikes.
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hey rosie,
Guidelines at my hospital say one vertebrae above and below the targeted lesion are radiated as well. If your lesions aren't in a sensitive spot where it needs super targeted beam, you should be ok to get them done together. When thr did my L4 (which grew like yours) I got my non troublesome L3 done as well. My nasty S1 was radiated same time as my equally ugly L5.
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Rosie, I also had rads to L2 and S2 at the same time. It was 10 sessions. The area they drew on me with marker looked enormous.
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Thanks for the info Sondra and li77. I hope to be hearing something from my MO soon. Right now my palliative care team is very responsive but I’d really like a more permanent treatment than just uppingpain meds.
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I have had rads to my T11/T12 area. They broadened the area to include the vertebras above and below the trouble spot. Fatigue and esophagis irritation were the side effects I had.
Currently having rads to my right pelvic region for femoral head and sitting bone pain on that side (mets throughout the area). 10 zaps... I'm halfway through and had a little more GI issues and fatigue. Now I notice my left hip pain and I am hoping it fades away. I know we are chasing this crappy disease but come on! (rant ended)
Happy Monday!
Tigre
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Hello everyone. I'm posting this on moth's recent forums.
Moth announced on Twitter that she posted a detailed update on her Tumblr blog (in her signature). Unlike IG, you don't need an account to read it. Essentially, she's still hoping the treatment will work, but her liver is a big problem.
https://www.tumblr.com/blog/view/nevertellmetheodds2017/690346753584676864?source=share
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Thank you, serenitystat.
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Serenitystat, thanks for the update.
Moth, I'm so sorry these last few months have been difficult. I hope you recover your strength soon so that you can continue effective treatment. Thinking of you.
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Hello, I'm not sure if this is the right topic to post in but here it goes.
My mom was diagnosed with Mets to bone,liver,lungs in January. She’s on Xeloda at the moment and last scans showed improvement lungs and lived however, a little progression in bones. Last bloodwork showed high calcium (11.6) and low phosphorus. I’ve googled it and I found hypercalcemia and/or hyperthyroidism. Has anyone experienced this before?
Thank you.
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Hi Nory,
I have experienced this a little bit. I have bone only mets. I don't know that I can go into all the finite details but I get why it happens in a broader sense. Bones are always releasing or absorbing calcium due to chemical triggers in the body. Low blood calcium levels trigger bone to release more calcium into the blood and high blood calcium typically triggers a reabsorption back into the bone. Bone mets damage the bone and the system gets messed up so when there is a progression leaching of the calcium into the blood happens and calcium levels stay high because the mechanisms telling the bones to reabsorb the calcium don't work right. Calcium and phosphorus naturally have an inverse relationship. If one is high the other is low because they bind readily to one another. In hypercalcemia you would expect a low phosphorus level because calcium binds to phosphorus to create calcium phosphate so the levels of free phosphorus get depleted in the blood. I hope that helps.
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