Bone Mets Thread
Comments
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I have had radiation three times, once for pain. I had a large lesion in my ilium, and had 15 rads for it. I had no side effects other than fatigue, which may have been from surgery, actually. A couple of weeks after I finished the rads, I realized that my pain was mostly gone. My last scan, which was about 3 months after the rads, showed that the outside of the lesion was sclerotic, which indicates healing.
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I am posting again in hopes I get a response. Please help me with a Zometa question. I am considering cutting back to once or twice a year, I started in December. I have heard that it is recommended to reduce or stop after 2 years. What is your advice? If my scans show nothing progressing, it would be nice to be free of a drug that potentially has serious side effects. Hugs, Renae
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20130502, I had rads to my entire spine and hip and femur in march. I was in extreme pain beforehand, couldnt get out of bed, was in a wheelchair, lost bladder control, and more. I had ten rads sessions, and it took about two months to see a major improvement in pain.
If the rads are to your hip then I don't think there are SEs. To the spine, I had terrible esophagis pain and couldn't swallow. The only thing is that you can get rads only once to each place, so be sure you won't need it there later. Rads can also weaken the bone, but your onc should be able to help you weigh up that risk.0 -
Latte and MaryLW thank you for sharing! I will definitely ask about the issue of only getting rads to an area one time and if now is really THE time. I am sort of thinking that I might like to give this another month to see how I do. I keep asking to have PT so that I can learn adaptive movements to make it easier to do things like rolling over, getting up etc. I have worked out some things but I am sure someone who really understands body mechanics could short cut this discovery process for me. For some reason, the oncologist is not eager to give me a scrip for PT. Seems to be worried they will break my bones but I am sure they would be careful if they are told I have breast cancer. Is it standard to meet with a radiation oncologist for a consultation before they start rads or does the medical oncologist just prescribe it and you go ... I know it is supposed to be my choice - but if I choose to wait - will the medical oncologist be annoyed since he is recommending this course??
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You would have a consultation with the RO before starting radiation. The MO may recommend it, but the RO is the one who decides whether to do the treatment and how much to do. I don't think you need to worry about PT hurting you. The PTs are very well educated and know what to do to help you build muscle and increase flexibility, and they understand your limitations. I started PT the day after my hip replacement and continued it for several weeks. The PTs and occupational therapists were invaluable for teaching me to deal with my new hip (and continuing cancer).
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20130501 I had rads to my humerus both to stop the cancer totally destroying it and for pain. At the time of it being done the only thing I got other than pain relief was dry skin. In the years since, I have pain associated with the destroyed bone as well as soft tissue damage which also causes pain. I will admit though that this pain is far easier to live with than the pain I was getting originally. I also use natural anti inflamatories to help with that pain.
Whether you decide to have the rads or not is entirely up to you but also keep in mind that they can only irradiate an area once.
Hope this helps.
Love n hugs. Chrissy0 -
Chrissy, yes the hair! You'd think after going through it once, it would be no big deal to lose your hair again, but it is....at least the first time I felt like I was going to get well and my hair would grow back, and everything would get back to normal. (HAHA) I guess hair should be the least of my worries right now, but, now I'm not so sure I'll ever have hair again, and that seems so depressing.
Thank you all for the encouragement for the bone biopsy, I'm feeling better about that now. Like xbrnxgrl I am a big baby! I get my port on Monday under general anesthesia, is that usual? I thought maybe that could be done with a local, but I won't argue!
SyrMom, good advice about the chiropractor. It was a trip to the chiropractor that finally sent me for an x-ray and my current diagnosis. When I described my back pain to him, he asked about any breast cancer history and immediately said he wouldn't touch me without an x-ray. I called my MO and HE sent me for tests. After seeing how involved my spine is, I hate to think of what would've happened had I had an adjustment.
Still trying to edit my profile....can't seem to get it to accept my changes.
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Ladies, I thought I would chime in about different scans and how they are read. My doctors don't do bone scans on me because for some reason they never show any cancer and then on the same day I can have a PET Scan and it shows up in ribs, spine, femur, etc. Last week had to have another chest x-ray for pulmonary embolism, they saw what they thought was a new lesion on my ribs so the did a CAT Scan from head to toes, to check to see if I had any other clots. Whomever read the scans said I had a brain tumor, and needed further treatment and I had a problem in my left lobe. Well I had a MRI and nothing was there mistake in whomever read the scan. I was relieved that I didn't have a brain tumor but for a whole day doctors and nurses etc. were treating me as if this was so serious and it was nothing. That is why I ask to see the scans compare to the ones that were last done. I never take anyone's point of view until I see side by side results and proof.
Don't doctors understand that their comments or how a scan is read and their premature ideas of such just cause us women so much more unneeded stress. If you are worried always ask to see your scans or x-rays and compare them to the last, this way you can see how things are going. Maybe some of you wouldn't do such but from so many false reads or even bones scan that say I'm okay then to find out later in the afternoon more lesions in the bone and more complications in bone, I won't accept just words I want to see for myself. Just my opinion and how I deal with this situation.
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I totally agree with your assessment of PTs. I worked with one after a car accident last october (when I certainly had cancer but did not know it yet). I just can't seem to convince the MO to give me an order for PT and without an order they won't touch me even for an evaluation and even if I self pay!
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Linda, my port was put in using twilight sleep. I was sore for a few days, but I have been so happy that I got it. I've had it for five years now, and I don't mind it at all.
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Lindatwo....I called my surgeon and told the nurse that I only want local numbing . She said great she would let the OR know. She said that most people are shocked when arriving at the OR and find out they will be awake for the port insert.
I have had two ports put in and one out...all with numbing only and chatted with the surgeon the whole time.0 -
I had rads to my right humerus and had a rod inserted. Four months after treatment I developed lymphodema in that arm - seeminglying radiotherapy can cause lymphoedema. I thought it only developed if the lymph nodes and/or breast was treated.
I've also had rads separately to my thoracic, lumbar and cervical spine. I got very fatiqued and nauseous with the treatment and had to be hospitalised a couple of times. I've lost 3 inches in height, my spine is curving, I've a dowager's hump and my neck is bowing - you know that look 'Here's my head, my ass is coming!'.
I feel because all my bones have multiple lyptic lesions and tumors that exercises to strenghten my muscles would be beneficial and help improve my posture but my onc doesn't want me to do anything not even gentle exercises. The PT I see in the hospital won't touch me and just gave me a printout of lymphoedema exercises. Very frustrating... I'm afraid to let people hug me in case I crumble into pieces, well not that many people want to hug me but ..
Also wondering about scans. They don't have a PET/CT machine in my hospital. I had a bone scan yesterday and the result is stable. None of my tumers has shrunk and they said they couldn't tell if there was any healing in the lesions. I feel disappointed as I was hopeful of some reduction or improvement but I guess stable is good? Would an MRI show up more information?
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Aoibheann, if I was near you I would hug you gently and tell you to lean on me and I'll lean right back on you. I had a PET scan first, then they did mri to confirm the mets I had in my hip. And they ruled out what they thought was mets in my clivus bone in my brain. So maybe the mri shows more then the PET scan. Stable is very good in my opinion. Hugs to you, Cynthia.
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Chrissyb, I have a question for you because you are so knowledgeable about BC. When I saw my Mo she said since I have no uptake or lesions after my last PET scan, I will now be on maintenance. What does maintenance mean?
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Macy when the doc talks about maintenance they are referring to low doses of your treatment in order to keep you at the point you are at right now for as long as possible.
Love n hugs. Chrissy0 -
Thanks chrissy, Love and Big hugs to you!!!
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I am responding to my own post in hopes that someone sees my question about stopping Zometa. Posted July 18th. Please share your thoughts. Thanks a lot. Hugs, Renae
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Renae did you post on this thread? I went back but cannot find the post to which you refer. Could you repost please?
Love n hugs. Chrissy0 -
I am posting again in hopes I get a response. Please help me with a Zometa question. I am considering cutting back to once or twice a year, I started in December. I have heard that it is recommended to reduce or stop after 2 years. What is your advice? If my scans show nothing progressing, it would be nice to be free of a drug that potentially has serious side effects. Hugs, Renae
Dx 4/3/2012, IDC, 3cm, Stage IV, Grade 3, 0/3 nodes, ER-/PR-, HER2-
Surgery 04/24/2012 Lumpectomy (Right)0 -
Renae, as you know the recommendation for maximum benefit from Zometa is two years.........it is less than a year since you started it. I know it can potentially have the SE of brittle bones and osteo necrosis of the jaw but that is only after years of use. At this point it will not be having that effect........just the good effect of protecting your bones from degradation as well as the bonus of no bone mets progression.
I'm not a doctor but my way of thinking would be that the time you have been on it is not long enough to to be even thinking of stopping but I would recommend you sitting down and having a good conversation with your doc about your feelings and thoughts and fears.
Hope this helps a little.
Love n hugs. Chrissy0 -
Hey Chrissy, I was put on Aredia rather thn Zometa at the outset of Stage 4. I believe it to be very similar. At about 3 years out, I mentioned to my doc my concerns re: possible side effects of this drug even tho there were no problems with it yet. He agreed and took me off it since it had been 3 years. I notice more problems with all my bone mets, but that could just be the way it would have been at this stage, Aredia or not. Anywy, now I wonder if we will ever use the drug again? It never caused problems, had no side effects, but the potential was tre fr a real bad one as you know. Any thoughts on this?
Hope you are doing okay, Chrissy. Thank you for always being such a help to all of us here on the Board.
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Hi everybody,
I posted in an old thread on exercise and bone mets - but the newest posts there are from 5 years ago so I thought I'd post here. Does anyone know how to find a certified trainer who is experienced with special populations (read people with breast cancer and bone metastasis). I am improving continually with respect to my leg/hip pain and hoping to avoid any more deconditioning. I am afraid to just jump into designing my own program - and all I have been able to find is:
"Exercise programs should avoid high impact, torsion, and manual resistive exercises Isometric and nonresistive isotonic exercises: swimming, walking, or stationary biking are recommended within reason of each patient's current limitation. Exercises should improve endurance and strength"0 -
Chrissy, I have been on Xgeva, the bone drug with the same SE's as Zometa, and my onc stopped it at 2 years. I have had no negative side effects. We're going to go on an every 6 months schedule now.
I know the drug helped heal my spine mets and has made my bones stronger in general. I've also had 2 root canals with no problems. Strong bones are really important for those of us with bone mets, so it is a balancing act. At this point, they have found the first two years to be fairly safe, and the benefits outweigh the risks. After two years, they begin to see more problems.
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Judie all these drugs belong to the family Biaphosphonates and are used as you know for the building of bone. There have been quite a few studies done on the effects of long term use of these drugs the being femoral head breaks, spiral breaks of the femur and of course osteo necrosis. What they have found is that wether you are using these drugs long term, ie two years or more, the effect that it they have on the bone seems to continue on for quite a while and the same was found if the taking of the drug was interrupted. From that statement I would think that it is possible to take it again should the need arise and your bone degradation become critical.
20130502 if you are wanting to get back into exercising I would suggest you make an appointment with a physiotherapist and have an assessment done. Get them to do you an exercise program designed for you and your particular problems. I did this late last year and have been super pleased with the results.
Sandilee from my research what you say is spot on regarding the bisphosphonates. I was put on an oral version of Bonofos another of the same group but had to stop after three weeks as I'm allergic to them. My bone health has to be monitored and I use natural sups to aide in keeping my bones strong.
Love n hugs. Chrissy0 -
Hi Chrissy,
Sorry to beat this topic into the ground but is a physiotherapist the same as a physical therapist. Here to see a physical therapist you need a prescription and I have been trying to get one for more than a month - my oncologist seems not to be comfortable referring me for physical therapy. I see him again on Monday (to talk about getting radiation and I have decided I am not ready to do that - I think I have miscommunicated the degree of pain and I want to give it longer to resolve since it is improving) so I'll ask again about a referral. Thanks for the encouragement!!! I rely on you and get a lot of help from reading your posts.
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Hi 20150302, sorry I sometimes type without thinking of the different names we have for some services. A physiotherapist in Australia is the same as what you call a Physical therapist. On the subject of getting a prescription from your onc, perhaps if you explain you want to ask advice as to what exercise would be appropriate for you to do considering the state of your bones as you are needing to do some not just for your body but for you well being as well. That, with a little luck may persuade him to give it to you.
I'm so glad your pain is improving for you as there is nothing worse than being in constant pain......that also may help with getting the referral. Good luck!
Love n hugs. Chrissy0 -
201305032, you can go to a physical therapist without a referral. You'll just need to pay the cost (in Boston about $200). If all you're looking for is an evaluation and a plan, you don't necessarily need all the follow-up appointments.
You might want to find a physical therapy practice with a specialty in (or knowledge of) oncology. Let your fingers do thw walking? Oh, right, they don't publish phone books anymore.
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Sorry if this is a repeat . I have been having pain in right hip since end of June. ONC has recomenned radiation for pain. Saw the Radiation folks and they argree. Have been taking vicodin all week just so I can walk. Does everyone think this is a good choice ? And If I do the radiation how long does it take for it to get rid of the pain? I am planning on starting on Monday, and really expecting to feel better. Tired of limping around and taking pills and depending on others for more then usual. Thanks for your imput. Red
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Redroan, I'm someone because of connective tissue issues could not have radiation of any sort throughout my treatment for bone mets or any cancer. However, my spine pain has been really bad and I have a new Oncologist who said she would never do just regular radiation for I would not heal but said that she will do gamma knife surgery because it will not affect tissue or other bone areas and healing of such then is not an issue.
I was wondering if any of you ladies have done gamma knife surgery and had no other tissue issues like you had with radiation of an area?
Thought I would share this information that I just read about for any of you who might be interested:
Lymphoseek which is an injectable agent used in external lymph-node imaging and intra-operative lymphatic mapping. In English this means it will dramatically improve the staging and treatment options for patients with breast cancer!
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Redroan, when I had rads for pain they told me it would take 2-4 weeks after the end of ten rads sessions until I felt the full benefit. And that the pain would likely get worse from rads before it got better. In my case, it definitely got worse, and the main improvement was only felt after about two months. But it was still worth it - I was in a wheelchair before, and now I am walking ok, just with a cane when I leave the house.
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