Bone Mets Thread
Comments
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Linda, thanks so much on the info about your rads, very helpful to me. I think I am having the same thing done. I don't recall him saying 3D but I do know he said he could radiate again if the pain comes back.
Dunesleeper, I hope you're feeling better than you were a couple days back.
Caryn, I still consider you very knowledgeable, thanks for trying to help me. I hope your cold goes away soon, it still sucks feeling like that. And you're right about the little germ factories. My niece is an EA for a kindergarten class and she is constantly fighting something off, she says they touch everything with their germy little fingers. I'd say skip the house cleaning for today, make yourself a nice hot tea and work on the report cards instead
Hugs to all, Annie
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Caryn - sorry you have a cold - miserable! And little children are indeed disease vectors.
Dee - you make me laugh out loud about being the frail woman men jump to do things for. I've never been able to pull that off either! Learning one's limitations sucks! I have to remember to baby my back; my affected vertebrae is only about 1/4" thick; most of the middle is gone. And I sure don't want a fracture and rods and stuff. So when the men don't jump when I look pathetic, I give them the evil eye. That always works.
Annie - I had radiation to my femur/hip (1 treatment) and 5 to my spine/rib (I think L2 or L3..can't quite remember). The first treatment which was femur/hip plus spine had me nauseated and throwing up. But only for a couple of hours. Then I was just tired. No skin burns. I asked why just one on the femur/hip and he said it was pain relief so that was all that was needed, but because I only had the one treatment, they could do more in the future. There's a lifetime radiation dose limit and he didn't want to exceed that in case I need radiation in the future. Also, they can only radiate a given area so many times (I believe it is linked with dose limit as well), so he wanted to be able to go back if I needed it. At any rate, after the radiation the mets in my femur, hip, spine and rib became necrotic and completely inactive. And I have a lot less pain.
Dune - glad your pain is better. Chronically tired seems to be a thing with this disease. If I could choose between the chronic pain and the chronic fatigue, I'd take the pain and get rid of the fatigue. There's not enough sleep in the world for me.
Hugs to all,
Terre
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Terre, thanks for the info on your rads, very helpful and here's to hoping mine become necrotic too! So I figured it out and here's Chloe in one of her strange poses, I think she was going for sexy in this one
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Annie,I forgot something in my earlier post re 3D radiation. It was very different from previous rads I had on femur and ramus (5 treatments on each). The 5 treatments consisted of radiation with machine shooting (for lack of a better word) on front and back, whereas with the 3D, the machine was shooting from 5 different angles.
Linda
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Caryn, Go ahead, whine a little it's good for you once in a while!!
I had that horrible cold that is going around. Got it right at the end of our vacation & it held on for almost 3 weeks, I couldn't shake it, and I didn't have little germ factories around me!! KCM, The fact that I tower above most men (I'm 5'10") getting them to help "poor little ol' me" is just never going to wash. Though DH is getting better at helping me out, though he's still not perfect (I put that in so you all could have a laugh)
Annie, Love Chloe, makes me miss Victoria Louise, she's been gone almost 2 years. And yes she had 2 names, don't most Queens? She's my avatar.
Have a good weekend everyone!! Cheers, Dee
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Hey there everyone, just stopping in to see how everyone is doing. This has been a rough year for me so far and I hope things are going better for all of you. I also have a power port on the underside of my upper arm and it has not been a problem and I have had it for 4 1/2 years! My MO has switched me from Abraxine to Exemestane because all my numbers have started going the opposite direction from what they should be going. I start Rads on my right hip on Tuesday and this will be it for me. I am almost at my lifetime limit and I have been radiated litterally everywhere else. Then I have a Brain MRI on Thursday to be sure there has not been any mets developed in my brain lately. I have been so unsteady and wobbly for the last month that my MO is concerned. I hope that the test show that there is no reason to worry and there is another explaination for the imbalance. Needless to say I have been anxious, panicked, and crying a LOT lately. I still have a lot of pain that we cannot seem to get under control, but I see the pain management doc on the 18th to see what other options I have. Anyway I am still hanging around and hoping for the best.
Hugs and love to everyone. AJ
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Annie - Chloe is beautiful! Thanks for sharing her picture. She does indeed seem to be posing!
AJ - so sorry to read that you're having such a crap time! Sending you big hugs. I know diddly squat about Exemestane, and I'm too lazy to research it right now, but I know I have this bizarre dizzy spell thing on Femara. Was worried about a brain met, but my MO said I'm just a dizzy blonde (he's a funny guy). So here's hoping that it's a side effect of the new drugs, and that your doc gets the pain under control.
Wow, Linda, the 3D radiation sounds interesting! I think I had the "regular" kind from front and back.
Hugs to all,
Terre
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Terre - Exemestane is another hormonal drug and is sometimes called Aromasin? I think I spelled that right.
AJ
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Hi AJ, I know others are taking Aromasin; maybe they can weigh in on the dizzies.
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Oh AJ! I hate to hear that you are having so many problems. Yes, the Aromasin can cause the dizzies as can any of the AI's so here's hoping that yours are from that and nothing else! AJ do let us know your result and until then the prayers are being said for you.
Annie your kitty is gorgeous!! I love her green eyes and pink nose and she is definitely striking a pose.......lol.......she is almost saying, 'Aren't I beautiful?'. I so miss my kitty, she passed six months ago at the age of 23 and I'm finding it hard to resist getting another.
I have had to learn the lesson of asking for help and believe me, that, for me, was not an easy lesson to learn. As a very independent woman having to ask for help was and still is something I will weedle my way around until the person I want help from actually suggest it to me and then I gratefully accept.......a lot of times that doesn't work and I have to actually ask.....sigh........how come there are no mind readers around when you need something done?!
Take it easy girls!
Love n hugs. Chrissy
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Annie - reminded me of your kitty posing (conceptually)
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Hi Dee,
Glad to hear your procedure went well (eventually). The BC Cancer Agency in Vic wouldn't do it? That's where I was first treated 12 years ago. Did you have a port-a-cath put in strictly for Pamidronate? I knew you were having difficulty with veins from your pre- surgery chat. I've had 2 treatments and both have adversely affected my arm veins, including the one I usually have blood drawn from.
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Hello to all,
Linda thanks for clarifying about your rads, now I know what to ask them before we start. I just had my tattoos done Friday and not sure which day I'm going for the radiation but asked if it's possible for them to do it this Friday when I go for my infusion. Just trying to save a trip as it's over an hour drive to the cancer centre.
Terre, you gave my entire family a laugh with that picture, hilarious. Omg seriously though Chloe is comic relief for us, she's just such a quirky cat and a bundle of energy. I know that if I ever lived alone I'd be a cat lady!
Chrissy, first I just wondered if they ever got to the bottom of your fatigue? I remember you mentioning you went for blood work and just wondered if you were able to get any answers. Secondly I know what it's like to lose a pet, our last cat passed 4 years ago at the age of 15. We didn't want to get another cat right away but it was just such an empty feeling without her. Not even 2 months passed and we found Chloe! She's a handful compared to our last cat but boy she makes us laugh. And about the asking for help, big problem for me too as I love to do everything on my own but lately I haven't been shy about asking. Like you said sometimes the hints just don't work and you wish people could read your mind.
Wishing everyone a great day!
Hugs, Annie
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Hi TraceyC, The port insertion can only be done by a surgeon on the island apparently & the wait time was more than my onco wanted me to wait. Because I had an infusion coming up the following week, he sent me to Vancouver because he could get me in within 3 days, it is done my a radiologist there. It was fine, we got a free ferry pass & were able to visit with old friends while there.
They are doing so much blood work & so many scans that we decided it would be best to get a power port, they can do blood draws & contrasts as well as the pamidronate.
How are you doing, haven't seen you here much? Or just the wrong threads. I seem to only hang out in a couple.
Cheers, Dee
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Thanks, Dee. It's strange how some facilities can only do certain things or can do them better. I understand when it applies to surgery but apparently the Civic Hospital takes better MRIs than the General here in Ottawa. Go figure.
I mostly lurk here, catching up every other day or so. I go back and forth between wanting to hang out more and worrying that I'm becoming too obsessed with my diagnosis. I don't remember having even a twinge of hip pain before dx and now every sigh has meaning. Some days I just have to forbid all thought of this and get on with things. I try to watch a half hour of comedy every day - that helps. T
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I wish we had a like button. LOL. I'm a bird person so I especially like your picture.
There are quite a few of you Canadians on here, eh. I like imagining where you live. I've been to Eastern Canada a couple times and Vancouver once I think. I especially liked the big garden on the island. I forgot its name. Mom and I rented bicycles and got lost in Vancouver. Fortunately the phone number of the place that rented us the bikes was on them, so I called to find out where we were. Mom and I are always getting lost and wandering into non-tourist areas.
I've never been to Australia, although I'd like to see some of it. It's so far though. Anyway I imagine Terre as a mild crocodile Dundee figure. LOL
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TraceyC, I didn't come here too much for quite a while too, until I got bone mets. But now, I'm afraid, I'm back & can't help myself but need to make sure everyone is doing ok. Funny how you've never met people, but you get to know them through a forum & sometimes they are the only ones who "get it"
I used to worry about every little joint til my onco told me to stop. She says it doesn't matter whether you have one met or ten. Not sure about that but she has a very good reputation, so for now I try not to worry.
Dune, I think the park you might be thinking about is Butchart Garden It is beautiful.
Take care all!! Dee
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Hello Carla-Sorry I took so long to write. So following a vegan diet doesn't really have anything to do with the sugar. I don't eat any animal protein. No meat, poultry, fish, or dairy. I drink unsweetened organic almond milk and make sure it doesn't have carragean in it. The only one I could find is the 365 from Whole Foods. The only sugar I get in my diet is the sugar that comes naturally from food and for me that is mostly fruits. I also eat mostly a raw diet and my only cooked meal is at dinner and usually something light. My MO says that it is a Myth that cancer feeds on sugar because of the way it is metabolized in the body but I'm not sure that I buy that. I have to say that once I cut the sugar out it was easy to keep it out. I remember cheating and grabbing a Chai tea latte from Starbucks which is very sweet and I was sick for most of the day because of it. Eliminating sugar makes everything taste different and better after a while and you can really taste the natural sweetness in food better.
But as the others have said it is such a personal decision. I have to admit, going out to eat and traveling and holidays with family are more difficult. And our food bill is out of this world! But for me, I see it as I can't take the risk of moderation when it is survival on the line. It is a very drastic view of the situation but this new normal/lifestyle is suiting me fine. It also helps that my husband is very much on board and follows the same diet as me to be supportive. We are not as restrictive with our 17 mos old daughter though and she does get meat and chicken but no processed food or refined sugar.
Also, this is very much a control issue. I can admit that. If I feel like I don't have any control over the cancer in me then this at least makes me feel that I have some power against it.
I guess we all deal with this disease in the best way we can and this is what has worked for us.
I hope that some of this information was helpful. I've read those books mentioned by Deanna and you may also want to check out some books by Kris Carr. I love some of her recipes.
Hang in there!! Renee
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Shutterbug
I just and your post and you are exactly two months ahead of me. I finished 15 rounds of radiation on Friday and am starting your exact treatment plan for chemo in a week.. Our chemo and targeted therapies are identical except my MO is adding Xgeva for my bones and Faslodex Injections to halt my estrogen.
How is your treatment plan working for you? Have they done a new pet scan to see if its shrinking your mets?.
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Hello MissingAlley!
I hope the radiation has helped you as much as it helped me. I know I didn't see the full benefits right away and was disappointed when the pain got worse before it got better, which was explained to me as "tumor flare". I've continued to notice improvements over the past few months. I had a bit of esophageal pain when swallowing towards the end, as I started chemo.
I have done pretty well with the Taxotere. I had acid reflux at first, but regular Prilosec has helped with that. I buzz cut my hair early on, so I still have about half an inch. It mostly fell out during round 2, and is now very thin on the top and front. Are you also on an every three weeks schedule?
The drug I've had the most trouble with is the Xgeva, which I get every other round. It made be break out all over my face, arms and back. I am prone to break outs anyway, and they said it was not a common side effect, so don't worry. The antibiotic they gave me for the break outs upset my stomach...BUT the good news is the SEs were milder with the second round of Xgeva. Also, there is some bone pain with the Xgeva which I gather is quite common. For me it was worse in the hip area and started about 4 days after the shot and lasted 2-3 days. I am taking a probiotic and have had few stomach issues from the chemo. Food tastes bland and I'm noticing it more over time. I also have had a hard time with thrush when my immune system is down. There is a simple mouth rinse to take care of that, but it tastes awful!
I had my first scans on Friday, and I have an apt on Wed to go over the results. I have noticed that the primary tumor has shrunk, but not as much as I would have liked. I guess we will have to wait and see.
Good luck to you as you start your chemo!
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Deanna,
I searched the forum yesterday for granuloma annulare and saw a couple of old posts from you on the subject. I had one spot on the top of my foot way back in 2009. Went to our dermatologist and she diagnosed it on sight, reassured me that it was not cancer and sent me on my way. It went away by itself after a year or two.
Last winter, about the same time as I started having other symptoms I now believe were due to my spine mets, I noticed little pink spots on the backs of my knees, upper thigh, and hip. I was pretty sure it was granuloma annulare but was not able to get into our dermatologists office until last week. I told her I started getting the spots and soon after learned I had breast cancer with mets. She reiterated what you said in one of your posts about auto-immune problems and cancer and took a punch biopsy. She said she was very sure it was granuloma annulare and not skin mets but still felt she should take a biopsy. She also mentioned that she would give me "a shot" to ensure I didn't get anymore spots. I was kind of taken aback by the biopsy (thought I was done with those!) and did not think to ask what the shot was. When I called her office later, the receptionist told me the shot would be depo Medrol.
I was wondering if you got any kind of treatement when you had granuloma annulare. After googling depo Medrol I am a little leery of getting this shot, but my original spots are now dime size rings and I have more more spots on my belly so I would like to do something about them if I can.
Sorry for the long, off topic post, but I know you are often on this thread.
Thanks in advance,
Jo
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"I guess we all deal with this disease in the best way we can and this is what has worked for us."- rseman
This is so true. My choice for moderation and enjoyment of all foods (though my diet has always been healthy) works for me. When there is definitive evidence that a more restrictive diet definitely keeps cancer at bay, I'll be there. No matter what you do, in terms of diet or lifestyle, if you are truly happy then each day is a triumph over bc.
Caryn
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Jo, your post is very interesting to me! Yes, I had what was biopsied and dx'd as granuloma annulare (an autoimmune skin condition for those who haven't heard of it) on my arms probably 10 to 15 years ago. It was really bad. People who noticed it would think it was scarring, although my skin eventually cleared up just fine. My PCP/Dermatologist (she's board certified in both), RX'd a couple of things, but nothing really made any difference. It just had to run its course, which it did in about two years, and I hadn't thought about it again for many years. I don't know if there have been any advances in treating it (like the shot you mentioned, which I haven't Googled yet, but will) since I had it.
What's very strange though, is that since my mets dx, I have noticed two rings again on my left arm. One of them is quite red and active, although responding well to a product I have on HealingFinds, an on-line skin care business I started a few months prior to my re-dx. But I have been wondering if I should mention it to my onc and see if she wants to biopsy it; or, if it's simply that those dormant cells were in my body along with the bc, and are flaring now because my immune system can't deal with both at once. Or, is there a closer relationship between this particular autoimmune disease and our bc???
So your skin biopsy did come back as granuloma annulare?
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Deanna,When I showed my mo my spots, I had the impression she had never seen anything quite like it and did not know what it was. She asked about lymes disease, but I know what that looks like and this is not it. She asked that a copy of the biopsy be sent to her but otherwise defered to my dermatologist's opinion. I thought doing a biopsy was a little bill padding, but after searching here found a couple of poster's whose bc had metastasized to the skin. I did not know that was possible. Their descriptions sounded quite different than my granuloma annulare though.
I won't find out about my skin biopsy until tomorrow afternoon. After that we are going out of town for a couple of days, but I will post and let you know when we get back. My gut feeling is that the ga is in some way related to my bc. Sort of interesting, the first spot I found was on the back of my left knee. All of the other spots are on my right side below the waist. My breast cancer was on the left. Probably reading too much into this I suppose.
On another note, you may recall a few weeks back we had some conversations here about scans, which were best at showing what, etc. I found this site to be informative
Since that conversation I also had my first pet scan, so now have had them all. I find it interesting that mri images are belly to back and ct and pet images are from top to toes. For my 3 mos scan I had an mri first which showed the spots on my spine were stable and those on my pelvis were larger. My mo said that this could be due to progression or healing and ordered the pet to try and determine which. Even after the pet scan seemed to show some activity in the pelvis she said she could not be positive as bone mets are tricky. Fortunately I have heard the same thing from others on this site so I found that explanation easier to accept than I otherwise might have.
Jo
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Hello, everyone. I have not posted on this thread, but I think it's time. I have bone mets in pelvis and spine. I had radiation on pelvis, T1 and T11 last summer and been on Xeloda. A bit of limping but with a cane for longer walks, I have been able to get around and be a mom for my two kids (11 and 9 yrs). The latest scans showed more activity on L1 so I am scheduled for another radiation later this week. All has been good and I got away to Vegas with my DH last weekend. All of a sudden, a very sharp pain started yesterday. I can't move much because of pain and I am holding my breath when I walk. I went to ER, but they sent me home with hydromorphone because the X-ray did not show any fracture or collapsed bones, just cancer
. I think it is more muscle related. I wanted to see if anyone here had experienced sudden onset of back pain. Would appreciate any tips.0 -
Hansaim,
I hope the radiation works well to eliminate your pain. It did with me. I've had radiation 3X for spinal bone mets & a lymph node this year. It took all my pain away & I'm more mobile.
Terri
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Hello to all,
Just got a phone call from the cancer centre regarding my radiation. Feeling a little scared because instead of booking it like they originally planned to do they are saying the radiologist wants to see me. Of course they re-scanned me last Friday so they could place the tattoos so my mind is worrying that they've seen something more and now need to talk to me. I've been on letrozole for just 2 months and one week and not sure if it should have been working as of yet. The pain in my lower back has been terrible lately and my legs hurt something awful. Hard to know which are side effects of the meds and which are pain from the mets. Just feeling really worried right now. I was really looking forward to getting this radiation done and having some pain relief.
Terri it's encouraging to hear that the radiation gave you a great deal of pain relief. I am praying for the same.
Hugs to all,
Annie
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Annie, when are you seeing the rad onc? I'm feeling your frustration with the pain, and hope you can see him/her ASAP!
I would hope you'd start to experience some benefit from the Letrzole by now, although probably not its full effect yet. I'm basing that on what I was told when I asked about the Anastrazole I'm on (one of the other A/Is) after maybe 3 mos... that I should be getting quite a bit of benefit by then, but not the max benefit yet.
Also, did you ever try to get your pain meds changed to something that might work a lot better for you than whatever you're on? (((Hugs))) Deanna
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Deanna, I like your new picture, love your hair colour! I see the rad onc on Friday afternoon. I have my infusion and blood work and see my MO that morning. I may be benefiting from the letrozole but the pain it's causing me has been hard to take. As for my pain meds I'm allergic to codeine and ibuprofen does nothing for me. Today I was prescribed dilauded but that's a pretty strong med, I had that after all of my surgeries so not sure about taking it.
I hate worrying so much but it's stressing me out as to why he now wants to see me. When I was there last Friday they would have done the radiation right there and then. I know I have to stop second guessing everything.
Does anastrazole cause you pain Deanna? And what do you use for pain relief? I didn't feel this terrible before I started letrozole.
Hugs, Annie
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Oh, Annie, I'm so sorry you're so worried. Hopefully, it's just a change of direction re. your treatment plan, and nothing more worrisome.
Anastrazole didn't cause me any pain until I recently started taking it in the a.m., rather than at bedtime. I sleep better, but I've had a noticeable increase in aches and pains, which I hope is just the anastrazole, but of course it's concerning. So now I'm trying to take my pill mid-afternoon, to see if I can sleep better and improve on this new pain. So far I've refused to take any pain meds, although I was on some various strong stuff when I was first dx'd, after my hip surgery, and until the Anastrazole really kicked in, probably about 5 months after I started it. I had Dilaudid for the first time in the ER, and I swear I it sent me into orbit. I hated it. But if it works for you, I'd say just take as little as you can and look at it as a temporary measure. It's very difficult to think clearly about anything when you're in pain.
I was tired of looking at my avatar from 2009 with hair that hadn't been touched post chemo. This one's more recent.
I'll be thinking about you and praying for good news on Friday! Deanna
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