Bone Mets Thread
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Scorchy, here is Australia if we wait an hour we can pick up both the films and report so get to see it before the docs do. Then we take them with us to the next appointment. We don't have to wait, the films will be delivered to our docs if that's what we want but I prefer to have a look and a read first and then discuss with the doc later.
I think I would have been fighting mad to discover what you have! Wow!
Love n hugs. Chrissy
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I get to see my scan images when I have my follow up with my mo ( though I usually have the report in my email the following day). I'm glad I view it with her, because I usually can't make heads nor tails of it!
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I have a doc who discusses everything with me to the point he gets out his medical books and photocopies the pertinent parts that we have discussed so I get educated right from the horses mouth so to speak.....lol. We view the film and he explains in detail, so over the years he has taught me to read the films almost as good as he can.
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Hi everyone, I'm new on iv site. I was diagnosed just recently with mets to my pelvis.
Chrissy, I have no luck with seeing reports here, we have to wait for the films and then radiology faxes the report direct. It's annoying as I don't have a report with the actual scans, I then have to get a copy from the oncologist to put with them.
Jennie
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Ok Ladies, any ideas what will be next for me? Bone scan showed improvement but also new growth in several levels of the spine and hip. I have been on Taxol weekly, Herceptin every three weeks and Zometa monthy for nearly six months now. They are meeting next week to discuss changing treatment and I will only take Zometa until I return in two weeks. So with the wealth of knowledge here, can anyone give me any idea what might be next? Blessings
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Thank you to everyone who replied/commented. It means so much. I wrote my initial post on this thread when pretty tired and drugged up at hospital. It turned out I had a partial ct to my spine the next day, and rads to a four-vertebrae section of my spine the following day (3days ago). Man oh man I am hurting now. Not just the area zapped but the associated ribs and my abdomen. They said it could be worse before it gets better. I just hope it will be as better as it is worse! So now I'm just taking my max pills which seem to do little (dilaudid aka hydromorphone and gabapentin plus Tylenol and ibuprophin) and squirming around painfully in my huge recliner chair trying to find a position where I don't press on pain points. I hobble painfully to the bathroom. Haven't showered for three days in fear of pain. (BTW, they sent me home right after the radiation.) fortunately I have someone here to cook and fetch for me.
I am so happy that there are so many of you who can lead sort of normal lives, working, walking, taking care of yourselves and maybe even others. My cancer has been vicious from the beginning. Early September 2012 noticed a very small lump on my breast. Had a mammogram that looked suspicious. but I was feeling fine. Very active, very strong. Then had core biopsy on October 3. By oct. 9 had weird severe pain in thighs and buttocks. Within the next 10 days developed odd rib and hip pain. By end of October the pain was so bad in my back that I couldn't sit up in bed. (I have suspicions that the core biopsy followed immediately by a mammogram squished cancer seeds into my bloodstream, but that's a different story.) My first CT scan on Oct. 31, less than 3weeks after feeling normal, showed "innumerous" bone lesions on my spine, pelvic and hip bones, ribs, shoulders, collar bone, you name it!
Since then, almost 1.5 years, it's been nothing but dealing with pain and immobility and, of course, mortality but that has bothered me less.
I try to be cheerful for my family and friends .....believe me, my Facebook posts have no resemblance to these posts. Still I don't have enough strength or faith to boost anyone here, and am glad that there are so many that do. Finally, while i know there are many that suffer far more than I do, I still hope I can serve the purpose, be the inspiration for some of you to say, "wow, at least I'm not as bad as she is!"
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Scorchy -
I'm with you babe!! Great post. I too felt great after a few months of treatment and years of pain..which lasted 2 freakin' weeks. I don't know if it's the Zometa or progression. I'll find out soon, due for onc visit and scan.
Karen forever49
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karencanada,
I'm so sorry that it's been such a rough ride for you. The paths we travel with bc, especially metastatic bc, can be incredibly different. Seeding of bc is a topic of hot debate and the bottom line seems to be that the jury's still out, with no compelling evidence to prove it. That doesn't mean it's not possible, just that there's no great evidence for it. Back to bone mets, I hope the rads relieve your pain soon and that you can get back to some semblance of a normal life. You shouldn't feel that you need to boost anyone here. This is a great place to be honest about however you feel and we each go through this in our own way. Take care.
Caryn
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Everyone.
Thank you for your thoughts, once I have this sacral biopsy behind me (no pun intended), I am going to talk with my interventional radiologist and explore this further. There needs to be some kind of protocol available at my hospital for patients to see films after a study. I want this to be the last time I have to be in a state where I am literally suffering before I see a tumor that might have been killed outright much sooner.
My thoughts are with all of you as you--we--live through this little adventure called Stage IV disease. Though, to be honest, when we have pain and disability "disease" is a nice way of saying living in a shit hole. Hang in there, sisters. At least we have one another.
Much love to you all,
Scorchy0 -
Thanks for all the good thoughts everyone! I'm wondering if the Femera is making the arthritis worse. If so, and if it's keeping me stable, it's worth it.
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MRRSROCKYTOPS sorry to hear that your current treatment is not doing it for you completely. I'm not sure what path your doc will follow but It is possible that it will still involve Herceptin and considering that Herceptin is usually given with one of the Taxanes he may change you from Taxol to Taxotere. This is all guess work as he may decide on a different path altogether.
What ever path is chosen I do hope that it beats back the cancer for you so you can get to meet our favourite fellow, NED.
Kiwicatmom, Femara will definitely make your arthritis feel worse. Do you take either a natural anti inflammatory or a chemical one? I use Boswellia and find it helps a lot.
Wow Karencanada, you sure have been through a lot! I hope the rads treatments kick in soon and give you some of the relief you deserve.
Scorchy why not just ask your doc to show you the films........sometimes they just don't think you want to see them so don't volunteer a viewing.
Take care all!
Love n hugs. Chrissy
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Chrissy, thank you so much. I am hoping they don't give up on Herceptin all ready. Blessings, Kathy
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I don't want to derail this thread since it's moved to other topics, but I did want to again say thank you for sharing about the rads. I am thrilled to say that in about a week I will be starting 20 days of radiation therapy--I remember how much of a slog it is going to it every day, and I know it can get worse before it gets better, but I am so looking forward to being able to walk, move, and face the end of the day without pain.
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RosesToeses don't worry about derailing, the subject matter here jumps around all the time and that's okay. Hoping the rads do the deal for you and you get some relief soon.
Love n hugs. Chrissy
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Hi chrissyb,
Of course I've asked. It seems to be a combination of 1) my physician doesn't look at the films but relies on the written reports, 2) administratively there is no way for me to see them in the MO's office (software issues), 3) I only see them when I see the radiologist and by then we're usually at critical mass. I am going to begin challenging the existing structure because I've fallen through these administrative holes twice now. Never again.
This is why I am interested in the experiences of others so I have something to offer as a counter example.
Scorchy
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Scorchy is there any way you could get films from the place you have the pics taken? I find it odd that you are not offered a copy from anywhere. I know systems are different but that I would think it your right to have a copy.
I agree whole heartedly about not wanting you to fall through those cracks again, you should never have fallen at all in the first place. Good luck with the biopsy!
Love n hugs. Chrissy
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Scrochy, my oncologist also only relies on the written report, but I get the disc with the films on it to look at in my home. My husband mentioned that he would feel better if they would review dvd with us but they don't have computers in the exam rooms here only at the reception desks. Good luck.
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scorchy,
Each exam room in my mo's office has a computer monitor on which the images are brought up. They are reviewed in great detail. Sounds like a new structure is definitely needed for your mo.
Caryn
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Hi! I'm just checking in. Still on the pain pump and the dose was upped gain yesterday so writing isn't the easiest thing. Screen is a bit blurry. Luckily there's auto correct!
I'm still waiting for news of the next operation, but in the meantime intfortunaltey I found out the the pain in my right hip is progression - something showed up on the bone scan I had just before the last operation. I now have a pet scan scheduled for April 3rd so please cross fingers. I've enough going on without that!
No other news, just waiting to hear. I hope you're all doing well. I'm sorry I can't read back at the moment to find out what going on, but ease know I'm thinking of you all. Knowing that you're all out there thinking of me is a huge boost an it what helps me to keep going
I'll be back as soon as I have news, in the meantime take care.
Hugs
Nicky
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Nicky, so sorry that you have progression.........I know that's not what you were looking for. I so hope you get some good news on the op side of things so you can get that pain sorted sooner rather than later. Our thoughts are with you and don't worry about reading back as we all understand where you are at right now.
Love n hugs. Chrissy
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Nicky, so sorry you are having progression. Praying your second surgery takes care of your pain and no more issues are found on your PET. God Bless
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My love and prayers are with you Nicki
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Hugs to you Nicky. So sorry to hear about progression and hope they get it sorted quickly.
Chrissy- I take ibupropen; will look for Boswellia. I just ache. I did buy a recumbent exercise bike and it arrived yesterday. Going to set it up in the living room so I can watch tv and bike. I think that may help and it should be easy on my spine. Other than that, all good except chronic tiredness...
Smiles and hugs to you all!
Terre
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Terre, most good green pharmacies have Boswellia but if you can't find it an online company called Biovea has it at a good price.
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Thanks, Chrissy! I'll look for it tomorrow when we go to the mall, which has some good pharmacies and herbal remedy type stores. I shouldn't complain about aches; it's not that bad, just slows down my walking a bit. I'm mostly grumpy because I quit smoking 2 weeks ago. And it has affected my attitude and made me a tad bitchy. I'm finding myself being rather negative and over-reactive. But worth it in the long run and I'm hoping the bitchiness goes away soon. At any rate, I think that's part of what's making me unduly whiny about the arthritis. I'm certainly happy it's not progression!
Terre
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Terre I quit five years ago and haven't regretted a single day just all the days before when I was killing my body with toxic smoke........hang in there girl, the days will add up to weeks and the weeks months and before you know it, years.
Love n hugs. Chrissy
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I quit in 1989 cold turkey with dh. I see you are on femera, it makes me moody and also my joints and my back aches, I read this is a side effect from the Femara because it depletes your estrogen. Dr. Put me on Zoloft and klonopin (sp). And it helps a lot with the mood swings. Hi Chrissy!!!!
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Can anyone tell me how long it took to back off pain meds initially prescribed at diagnosis? I started off with fractures in the thoracic area so I had several months of intense pain that I thought were due to an injury before they diagnosed bone mets. I've been on 30 mg ext release Morphine tabs every 12 hours since the middle of January. Started off with Percocet as break-thru but no longer take it. After receiving Xgeva, the bone pain intensified & my onc upped the Morphine by 15 mg per 12 hour dose & I haven't needed the Percocet. Anyway, I can usually feel that it's time for my Morphine within an hour of when it's due. I usually hold off to a certain time to stay consistent with doses, but I assume that lessening pain meds must be a goal at some point. I've already had radiation and tremendous relief from the fractures in the thoracic area, but I do hurt. Will we always hurt? Will lessening the pain meds be a trial & error sort of thing? See how we do with a reduced dose, then use the dose that works? Or, does something happen at a certain point automatically? What am I asking? I don't want to hurt, but I don't like the way I feel on Morphine. I function fine, but it keeps my head loopy. I figure anything strong enough to control the pain is probably going to make me a bit loopy, but I'm curious about how others have been handled. Thanks!
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Firelady, I really understand what your concerns are. The thing is, your body becomes adjusted and "tolerant" to morphine, and so you often need increasing doses to manage the pain. With the extended release, if you want to decrease the amount of meds you are taking, you have to go back to the shorter acting forms to slowly decrease those by one or two pills a day. For example, if you are now on oxycontin 20 mg every 12 hours, you might go to 15 mg every 12 hours and use the breakthrough meds less and less frequently. This is fine if your pain is under control, and you asked "Will we always hurt?" and unfortunately, I suspect the short answer is "yes." Now, there may be some fluctuations in that, and I find that pain increases when I don't get enough rest, when I have pushed myself too hard, when there are extra stresses tossed into my day, etc. Those are the days I need that breakthrough pill.
I recently went on extended release morphine that I am supposed to be on twice a day, but have talked with my doc and am actually just taking it at night to keep me from waking up in pain. That seems to hold me for nearly 14 hours at this point, so I really only need one or two pain pills during the day.
As far as feeling loopy. That is one of the SEs that you MAY get some tolerance to if you stay on the drug long enough. When I first started taking narcotics for pain relief, I was scared, angry, disappointed that "I just wasn't tough enough" and that I should be able to handle the pain without using these meds. I was wrong. I need to be a nice, kind person, and when I am in pain, I am not nice, kind, fun to be around, etc. I cry and whine. So I take the pills and turn into a real human being again, albeit initially a rather foggy one. I would not drive while taking them. However, as the months went on, my body adjusted so that the fogginess was minimal, and I DO drive short distances to the grocery store on my own. I am still careful about night time and longer drives. But the "loopy" feeling has definitely improved!
One SE that does NOT improve and the body does NOT develop a tolerance for is the constipation, so stay on top of that!!!!!! I have ended up with a partial small bowel obstruction that I suspect may be due to my "benign neglect" of this little fact!
Have you talked to your doc about fentanyl patches? I have not used them, but there are many women who have, and really like them better than the extended release morphine. I can't remember which thread it is on, but I think it is in the Pain section, and I will see if I can find it (that is, if I can remember to do that once I finish THIS note!). NSAIDS are great for bone pain, but unfortunately, many of us cannot use them for a variety of reasons, mostly because of drug-drug interactions and bleeding potentials from platelet inhibition. If you can use them, ibuprofen and naproxen are pretty good to help reduce the need for narcotics. If your pain is very localized, lidocaine patches can also help, but I don't know how effective they are for the deeper bone pain.
One of the problems with most of us is that we experience more than one type of pain, and in more than one location. Chemo, rads, surgery, tumor itself, fractures - all can cause localized pain and generalized pain. I have an interventional pain specialist on my team who has done several injections of the nerve in the back of my arm that was cut during BMX/ALND, and that has helped me tremendously FOR THAT PARTICULAR pain, but of course, not for any others. What she DID tell me was that we could consider a pain pump which can really target the source of pain, and uses a very small fraction of the dose of pain meds compared to using oral or systemic meds, so the SEs of loopiness and constipation are greatly reduced. They can do nerve blocks for fractured bones which can reduce the need for other pain meds. So you might want to see not only a pain specialist, but also one who can do interventional pain management.
I would be remiss if I did not mention using other pain control methods, such as acupuncture, mindfulness-based meditations, imaging, physical therapy, and other complementary medicine practices. I have worked with our integrative health center and find yoga, massage therapy, and mindfulness-based practices help get me through and actually reduce some of the pain.
I actually taught pharmacy students before retiring, and taught advanced pain management classes. It seems like decades ago, and I seem to have forgotten more than I ever learned, but what I have written above is pretty much standard approach. I apologize for the lengthy response, but hope I have helped a little. Please feel free to pm me if I can answer anything else for you as I don't want to hijack this thread completely as some women have lots of pain, others very little.
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Linda, great post! Really gets to the nitty gritty of pain management.
I also use acupressure of the muscles to help with pain management and this works very well for me. Like you Firelady, I am working toward getting off the narcotic drugs (I am on slow release Tramol).
Hope you find something that helps in Linda's post.
Love n hugs. Chrissy
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