Bone Mets Thread
Comments
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Beachbum, it doesn't really matter if your mom has breast or lung cancer. What the docs should do is genotype the tumor. If it has the EGFR mutation then she should get the drug for that. If it expresses HER2 she should get Herceptin.
It would certainly be better to treat her cancer based on the characteristics of the tumor itself rather than trying to label it.
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Hi, Chris:
I have mets in similar places. When I had my first bone scan, they said, "You've been in a lot of pain for a long time haven't you?" I hadn't been in any pain. But, it was weird. After the scan, the pain started. I would call your doctor's office and see if someone is covering for him or her. They can give you a prescription.
Take care and all the best,
Laura
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thank you laura i did get a prec. of pain meds. and it helps but also scared that maybe progression due to the pain and it radiating to my pelvis
hugs chris
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Chris.
I had extreme hip pain that made it difficult to walk, get into a car, get my pants on, anything that I had to lift my leg or swing my leg. The bone scan didn't show any lesions there, 2 weeks later with pain still there as strong, we did an MRI and it showed the lesions on my S1, L2 and left hip...all were new lesions. So for me anyway the bone scan didn't pick this up. it was nerve racking but I had to keep insisting that this pain was new and something was causing it. Even the recent bone scan I had done this week didn't pick up those areas of mets. I subsequently had 10 rads on the lower spine area and left hip and it helped a lot with the pain. Please keep us posted. God Bless you,
Linda
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Beachbum ... when I had radiation to spine they said I couldn't have chemo until done - so I believe until the radiation is completed, there's no chemo.
Chris, I have mets throughout my spine and on Memorial Day bent over and could not straighten. The pain was 15 out of 10!! Took weeks to get over; however, the good news was no fracture and didn't appear to be caused by mets (although mets there). Pain was on R side of sacro iliac joint/lower back/hip. It ended up resolving, which confirms not from mets. Believe muscle spasms & I have disk bulge in lower back, so have to be real careful how I move and what I do. Been doing mild stretches in bed before getting up in the morning - PT taught me.
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thanks everyone you are all so helpful. i know i overdo things and i try to be careful but when you have been used to doing things on your own for so long its hard not to.im learning the slow and hard way.
prayers and hugs chris
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Thanks again.
Pajim - in terms of subtype all we've heard so far is ER+.
SyrMom - That's good to know about no chemo until after radiation. I don't think anyone had told us that, but I'm guessing it would mean another 2 weeks or so until chemo because Mom is about to start another round of radiation on her skull and eventually her hip.
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Hi everyone,
I haven't posted to this site before, but I have been reading the posts about bone mets. I may be new to this site, but not new to cancer. This is my third time with cancer since 2004. This time it's stage IV breast cancer with bone mets to both femurs, right humerus, clavical, spine, multiple ribs, entire pelvic area (incl hips), sternum and skull. Was diagnosed with recurrence in August of 2011 and am now NED since July 2012. Yipppppeeeee!!!!
I didn't have any pain to speak of until I returned to work in February of this year. Since then, I've had nothing BUT pain. May 30th I had a titanium rod placed in my right femur and really, really need to have one in my left femur, but couldn't get the extended time off from work. (BTW, I work for a hospital that just built a big shiny new and improved cancer treatment center, but they couldn't see fit to extend my leave.) I'm not eligible for FMLA until October of this year, so I was basically told that I had to return to work on July 15 or lose my job (and benefits). I don't mean to sound so bitter, but MAN if they could feel the pain I suffer from every day! Taking pain meds and returning to work is an impossibility because the pain meds make me so sleepy. Is there anything out there that works that WON'T make me feel like sleeping all day?
Anyway, I'm being treated with Afinitor and Aromisin (and a monthly Xgeva shot) and everything has been stable except for the pain. Just seems to be getting worse daily. I live in a home with stairs and have difficulty climbing the stairs obviously from the pain, but also because my legs are so weak! Is that also a SE of bone mets? I've been trying to do water exercises every day or every other day to strengthen my legs for about a month now, but nothing seems to be helping. (It's the only form of exercise I can do relatively pain-free -- that is until I get out of the pool.) Maybe I just haven't exercised long enough to notice any difference. I don't know, but I'm feeling quite despondent. Dreading going back to work (even though I love my job), but I just don't know how I'm going to deal with the pain.
I have taken Oxycontin, Oxycodone, hydrocodone -- forget about ibuprophen and tylenol, they don't even come close to touching the pain. I couldn't take the pain last night, so I took 5 mg of Oxycodone and didn't wake up until 10:30 this morning.
Anyway -- two questions are: Any pains meds that work that don't make you sleepy and are weak legs a SE of bone mets or something else?
Thanks for listening and for any input you may have! Kathy
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Hi Kathy so sorry you are in so much pain......it really sucks! The only thing I can suggest that may help is an anti inflammatory. With everything else going on we have a tendency to focus on the end result when we should be looking at part of the cause and its not always the cancer.
I had excruciating pain and rather than up the pain meds for exactly the reason you have quoted I added into my daily pill diet an anti inflammatory.........what's another pill or two if it helps. Because I have a tetchy system I use natural anti inflamatories but I'm sure your doc would give you a scrip to try and see if it makes any difference for you.
With bone mets, as you know, there is a great deal of bone degradation. Some of your pain may be caused by you bone building meds........something else to look into.
I sure hope you can get this under control sooner rather than later. Good luck!
Love n hugs. Chrissy0 -
Kathy, I took Aromasin and it made my bones ache terribly. For ex., raising my arms above my head for a PET scan was so painful, I was sobbing by the time it was over. And I was on heavy duty Fentanyl patches for pain, plus oxycodone. Natural anti-inflammatories didn't help but they do help other women as you can see from Chrissy's experience. Aromasin keeps estrogen from nourishing our joints, which we need for pain-free flexibility. I had to stop taking Aromasin, which was a bummer because it was shrinking my tumors. The pain from my bone mets is too intense for me to work at all, I'm sorry to say. Let your doctor know about the pain. You don't have to live with it. I've had some luck combining OxyContin with Alleve. Hope the pain becomes tolerable soon.
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Hi Kathy
So sorry to hear about the pain you are going through
I was wondering if you also take bisphosphonate for your bone mets, this might help for pain and your drowsiness. Anti imfammatories might help as well
Hope you find a solution for your drowsiness and pain soon.
Comfort hugs!
Danie0 -
Kathy,
Some of the ladies here have had success with a pain pump - a device that delivers pain medication directly to the spine, so that you get excellent pain control without having to ingest pain killers, so the dose actually decreases. The result: pain control with no drowsiness.
It seems like you might be an ideal candidate. Have you talked to your doctor about this form of pain control?
Jennifer
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I wasn't aware of the fact that bisphosphonates helped with pain management. Any comments?
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Kathy, In my experience not all the pain is bone pain. Some of the pain is from nerve endings on the bones and that pain responds to drugs like lyrica. Anti inflamatories can be very effective for bone pain. However I found that the one I was on (difene) irritated my oesophagus and I had to stop taking it. Currently I am on Fentanyl patches and lyrica (dosage of both gradually increased) plus 15 mg oxynorm for breakthrough pain and 500 paracetamol as needed. I felt sleepy for a couple of days after each dosage was increased and then I was back to (new) normal. I also had a few nerve block procedures, the last of which seems to have worked. However I am limited in what I can do and I have retired from work. Btw I think the weakness in your legs is a se of your meds not your bone mets.
The pain pump that Jennifer suggested sounds well worth discussing with your doctor. I would be interested to hear how you get on and what you decide to do.
Hope you get the pain under control soon. Take care xx
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I am 1/2 way thru rads for my femur met and so far have not experienced too much pain. I was told that I might get a flare up - inflammation in the bone from the rads - but nothing that Advil or Aleve can't handle.
I do remember that when I was doing chemo I had to take neupogen injections and I had terrible bone pain from that. I took sinus medication like Clariton or Benadryl (non drowsy) and that really helped me. I got the tip from this site.
I was going to try that again if the bone pain from rads got bad but so far I haven't needed to.
Did anyone else try sinus meds for bone pain? Did it work for you?
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Hello Ladies,
This is probably a stupid question, but in a situation where two types of scan give different results, which scan should be believed? I had my tumour markers climbing in the spring, and after having a petscan in May I was told that there was a tumour on my left femur. I was then sent for a bonescan in June, and when I attended the hospital for my Faslodex injections 4 weeks ago I was told by the locum doctor that the scan only picked up the tumour which I already knew about and a touch of arthritis. The plan was that I would be sent to a different hospital to have radiotherapy on the tumour in the leg, and I was waiting to hear from that hospital for the date it would begin.
When I turned up at the hospital today the oncologist read the file and started talking about the mets in my rib bones. It seems that the bonescan picked up a number of very small tumours dotted about my ribs, and the locum had obviously not read the scan details correctly. I advised her that this was the first I had heard about mets on my ribs. She then got the senior consultant in and he said he had not seen my bonescan and he preferred to believe the petscan and felt that it would be more accurate than the bonescan. He will bring my situation up at some tumour meeting which takes place later in the week, and the decision will be made there over which scan they believe and whether they cancel the request for radiotherapy on my femur or not.
I am quite shocked at this, I would have assumed they would give me another scan even if it is only to get the best of 3 in order to see if I do have secondaries on my ribs or not. Am I being naive, or is the petscan really a more accurate scan than the bonescan?
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As far as I know, a pet-ct scan is more accurate than a bone scan. But it doesn't really matter. What my onc would do in a case like this is do another pet scan in three months to compare and look for changes. As far as I know, rads are only done to relieve pain in bone mets (at least on my case) so if you don't have pain in your ribs there is no reason to check whether there are mets there or not, and to check in three months to compare should be fine.
Just read your post again - did the femur mets not show up on the pet scan? That would be more worrying to me. If it was big enough for them to send you for rads and then it disappeared, that would b strange. Or maybe the faslodex got rid of it? That would be good!0 -
Rads are used to treat bone mets, even without pain. I had rads x15 to a 2 cm met on my upper femur. It is now quite dead now!
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Thx exbrnxgrl, i stand corrected. I guess my mets are too widespread, so that's why my onc is only treating the ones that cause me pain. And even after they did rads for pain, they are still there...
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I had radiation after my hip replacement to kill any remaining cancer cells in that area. Then I had rads to the ilium because it was a large lesion and causing pain. They are not radiating my scapula since it is a small lesion and causing no pain. I think my future bone mets will be radiated only if they are causing pain.
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Sorry Latte, I tend to write War and Peace and then leave out half the information. The tumour in the femur appeared on both the petscan and the bonescan, but the small tumours on the ribs only appeared on the bonescan. The consultant felt that the petscan was more accurate than the bonescan and his personal belief is to work on that assumption, however it seems to be a judgment call by those who attend the tumour meeting. I suppose I am disappointed as I had hoped there would only be the tumour in one place and I could have radiotherapy. I was told that if I have secondaries in other areas I would not be given any radiotherapy as it would be difficult to treat such a large area.
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Ah, now I understand! So it sounds like your drs are like mine - they only use radiation for pain or if a single location. I'm sure it is disappointing for you since you thought it was a single location.
Perhaps you can discuss with them what their plan is if they cancel radiation now? Maybe they will agree to do another scan in three months and if the ribs are clear (either because there was a mistake in the scan or because faslodex cleaned them up) to go ahead then with rads?0 -
Thanks for the advice Latte, at the next scan if I only have mets in one place I will push for the radiotherapy to take place.
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I think the reason that radiation is usually saved in stage 4 for painful areas is that you can only have so much radiation before it becomes dangerous.
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Yes, that may be true but each case needs to be evaluated individually. If a short course of rads can get a lesion to necrotic it is a good tool to use.
Caryn0 -
Fridaygirl- A questionable lesion showed up on my femur on an xray, so I had a bone scan and MRI done on the same day. The bone scan was not indicative of cancer, while the MRI was suggestive. I then had a PET, which was suspicious, and a biopsy which confirmed. I'm not sure why this was the order of imaging I had.
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Thanks for all your replies. I am amazed that so many different scans can provide such a variance of results, and more than a little worried that errors in diagnosis could be made as a result.
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FridayGirl, we must all remember that those reading the scans are human and because of that can on occassion, make a mistake.
Love n hugs. Chrissy
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This whole conversation has me wondering if I have a lot more mets than I think I do. I've only had bone and ct scans, no PET or MRI. Oh well I guess I will just assume things are going ok with TMs down because at least those are reliable for me so far.
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Another factor is what kind of bone mets you have- blastic or lytic. My blastic lesions don't show up on a bone scan, but do on the CT scan. My onc used a MRI to convince me, and said a PET would probably work as well. So far I haven't had the PET, the MRI showed them clearly.
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