Bone Mets Thread
Comments
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Annie - if it helps at all, Letrazole makes my back, hips, knees, hands, and feet hurt like mad. I get a really sharp pain in my back on the right side just below my waist at the top of my pelvis. My MO says that's a "typical Letrazole spot" for pain. I've had two bone scans due to the pain and it's all side effects - no active cancer. My spine and rib where the cancer was ache sometimes too. I'm on the New Zealand form of Celebrex and it helps heaps! Ibupropen wasn't doing much except giving me the trots. I went on Alieve and it helped for about 2 months, then nothing but upset tummy to show for it. The Celebrex makes me feel almost normal.
Hope they find answers for you quickly and get your pain taken care of. And while it's easy me to say "don't worry" (Because I'd be a basket case if they wanted to see me again), he may have options for you to consider with the type of radiation to consider and hence the meeting.
Good luck and hang in there!
Hugs,
Terre
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Deanna, I'm thinking you're right about the dilaudid, maybe I should just take half the dose to help me through this. It did relieve my pain after my surgeries. I hope changing the time you take your anastrazole helps your aches and pains. I take mine at supper time and I sleep well but the aches and pains are there 24/7. I feel this drug is affecting my MS as well. The pain in my hips and legs is brutal, really making it difficult to function.
Thanks so much for your positive thoughts, and I'm hoping you're right and it's just a change in direction regarding my treatment plan. I hate that every little thing is making me worry. I'm praying for good news Friday too!
Hugs, Annie
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Annie,
Hope they will still be able to do the radiation.
Hugs,
Terri
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Terre, it does help and thank you. The areas you mentioned are all the same places I hurt like crazy, including my legs. And I get the same sharp pain in my back. Alieve upsets my stomach as well. I wonder if Celebrex would help me? That is an arthritis med right because I think my uncle was just prescribed that. He was so full of arthritis he could barely move with the pain and it has been a miracle drug for him. They don't want him on it for too long though and I'm not sure why.
I hope you and Deanna are both right and the meeting is just to discuss options or types of radiation.
Terri, thank you, I hope I'm still able to have it too.
Hugs to all,
Annie
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Well went to Treatment (Chemo) they up the dose...I should be getting 150 mg every 3 weeks...but since July they lowered dose to 90 do to my counts and I go weekly.....today...since he saw that my hair was coming back in ...OC up the dose to 115 mg....my counts were ok ...I was wondering why my hair was coming in.....I feel ok...
Going to be 20 degrees and snow about 2 to 3 inches...wind is blown pretty good...it's a chilly nite here in Boise, Idaho...
Heard alot of other patients celebrating there last treatment today...for me it was sad...but good for them...
Also had a hard time...this time last Nov...I remember Nov 13th cuz Veterans day was on Monday...and I went to my first Doc appt with my primary...because i was getting SEVERE migraines...I went with that Godly pain for 6 mths..going to physical therapy..MRI of the BRAIN...ruled out strokes...brain tumor...etc...ended up going to ER pretty much every mth...to get Demerol IV to suspend the pain for at least 24 hrs...otherwise I was on Ibuprofen and the hottest showers on my head to relieve the pain...then it was off to physical therapy for a strain neck/pinched nerve the doc's said i may have...cont until March 27th...I begged him to order other tests...He finally ordered a CAT scan....24 hrs from that appt ...I had his Colleague calling me and telling me she was sorry but I have CANCER....fell to my knee's I knew it...I knew it....Screaming just Screaming....no one there with me...OMG...Then hung up 20 minutes my OC called and told me to come in office right away in the AM ....got there everyone on my team was there...pow wow....discussion...Radiation immediately...I had a tumor on my Brain Stem bone...(yea...that is what was causing my headaches)....Another on my spinal cord bone..L6 etc...forgot which other's...another on my right hip...Let's get her done...and I'm here today...
I felt it for a moment....then I was over it...I can't change anything or anyone....I just keep on knocking on God's door and ask him to keep me around...I have plans...with my 3 Grandson's 2 yrs....8mths....7mths..
Another day Another story of my journey...that is what I look forward to talking about my journey with you all ....Peace Out
Carla
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Carla - what a rough ride you've had and what a shock for you. So sorry you're doing through this all. I empathise; while my experience wasn't as bad as yours, kept having pain in my hip, went to the doc in August, October, November, December and they kept sending me to physical therapy. Finally got an x-ray in Jan and it was major femur damage from cancer.
Annie - Celebrex is an arthritis med; I have arthritis too, but not everywhere that I hurt from the Letrazole if that makes sense. Anyway, it helps both types of pain. Celebrex can be linked to heart problems if you stay on it for more than two or three years, so you need to be monitored and it's not prescribed to people with heart problems. My MO feels that it's worth the risk as my heart is fine and if it improves my quality of life significantly, it's worth the risk. But it is an individual decision. I had another arthritis med prescribed first and it work, but it trashed my tummy. One would think with the chronic stomach issue I have that I'd be thin, but no such luck.
Hugs to all,
Terre
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Hi Annie and Deanna,
My regular doctor also does palliative care as a professional challenge. Opioids like Dilaudid should not be feared when pain is present. The likelihood of addiction is extremely small. Check out this link to a World Health Organization article. http://www.whocancerpain.wisc.edu/?q=node/244
Pain shouldn't be tolerated for fear of dependence.
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Tracey, thanks for posting that website. I did read the article and had my prescription filled today. I'm hoping it helps with my pain but doesn't make me feel too loopy. I hope you're feeling well.
Hugs, Annie
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Hi AnnieO,
I am on a different AI drug (anastrozole/arimidex), with monthly infusions of Zometa. I had some joint pain prior to starting treatment, but it has definitely increased since starting anastrozole.
Last month was my 3rd month of treatment and about half way through my pain level went up noticeably for no good reason. I had shooting or/and pulsing pain down both legs. Scared me when I started getting pain down the right leg as all my pain was on the left or lower back previously.
In the last few weeks the back and leg pain have gotten much better. So maybe it takes a few months before the treatments kick in, and hopefully you will feel better as time goes on.
It has been hard in these first few months of learning about my mets and starting treatment to tell the difference between se pain, cancer pain, and just plain getting older pain. I know it's hard not to read too much into every little thing and let anxiety eat you up, but I hope you get some sleep tonight and some reassuring news and pain relief tomorrow.
Jo
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Hi Deanna,
Got my biopsy back, it is granuloma annulare. My dermatologist thinks 2-3 shots of depo Medrol spaced 2-3 weeks apart will make it go away. I decided to wait until I could research it further and pass it by my mo. I think I would like to try it tho, the spots I started with keep getting bigger and I am seeing more new spots.
Let us know how your experiments with when to take your AI pan out. I take mine in the morning, main se's are hot flashes and joint pain, but insomnia is turning out to be the worst of them. Seems like some nights I don't sleep for more than 15 minutes at a time. I keep wishing I had some more sides to roll over on.
Two thumbs up for the new pic!
Jo
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Glad your biopsy turned out to be as expected, Jo. I love the "more sides to sleep on" - I'm with you! And even nearly two years in, I still can't quite tell SE, cancer, old age, arthritis pain apart. Having two bone scans for the same pain and still coming back NED, I'm a little less neurotic than I was.
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Terre, when you say NED do you mean total NED? Can we get to NED from Stage IV?
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dunesleeer
I'm going to jump in here. Yes, we can get to total NED, but remember, that doesn't mean cured. It means no evidence of disease, at the moment. In other words, nothing can be detected now, but that gives no hint of the future. I have been completely NED for over 3 years, but that can change at any time.
Caryn
PS: some have argued against NED,because with bone mets, you usually see where the lesion was, even if it's not active. So they argue that there still exists evidence of the cancer. While it is true that the necrotic area is visible on scans, so are healed fractures, but we don't say we still have a fracture. This could turn in to a semantic argument, but many mo's use the term NED.
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Dunesleeper I have been totally NED for just over four years but I am fully aware that that status can change at anytime. Right now I'm just living and loving life! Aim for the top I always say but be happy even if you only reach the first floor.
Love n hugs. Chrissy
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Thank u Dunesleeper for asking and thank u Caryn for clarifying NED. In one of my other posts I say I was NED, but that's not true. My medical reports say no progression/stable for bone mets and axillary lymph node. Now I understand! Better late than never.Linda
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Hello to everyone,
I spent the entire day at the cancer centre and I'm exhausted. Early morning start with my blood work, pamidronate infusion #3 and an appt with my MO and Radiation oncologist. So here we go! Blood work is all good, tumor markers take 24 hours so have to wait on that. Talk of a PICC line somewhere down the road cuz my veins are getting angry, he said simple procedure, don't worry. Does he know who he's talking to?
Now off to the radiologist. Change of plan and I need you all to advise me. Original plan was to radiate the humerus and L5, one zap to each, more for pain control than anything. He met with my MO and Orthopedic surgeon and they are saying since I have less than 5 mets they want to do SBRT ( stereotactic body radiation therapy). Used for oligometastases with 'curative intent'. Even though technically we cannot 'cure' metastatic breast cancer, he says women with less than 5 lesions can receive prolonged progression free survival.
Caryn I'm guessing this is what they mean by NED. Rendering these lesions necrotic and hoping they stay that way and that they don't reappear somewhere else. He said because I'm young (49) they want to be a little more aggressive and using 'local measures' sometimes we can achieve a very favorable outcome.
The risks of course are fracture and they said a less than 1% chance of paralysis because of my rib met that's near my spine (freeked me right out). Of course they said they have to tell you these things and that my rib met is far enough from my spinal cord that this is highly unlikely. I've decided I should do this as they will be targeting all my mets, not just the humerus and L5. He said the total amount of radiation with this technique will be less than what I would have received with the two zaps. However I go every day for 2 weeks, alternating one day rads to humerus and sternum, next day L5 and rib and it continues to alternate until end of treatment.
Has anyone had this type of radiation? Thanks for reading my novel and any and all input would be greatly appreciated.
Hugs to all, Annie
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Annie, Sending prayers for a very successful rads tx. Just a thought here...I always thought that the designation of NED was ambitious ....maybe NEP (No Evidence of Progression) for us Metsters would be more accurate since we are "on a short leash" via all the imaging and any progression can be verified. Just my idea while I wait for MRI results from c.spine "uh ohs". Three months ago a CTscan revealed a few sacral areas that were suggestive of metastic spread....then MRI said possibly positive for mets then Pet Scan said definitely no evidence of metastic disease. I am waiting for my date with NED
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Jobur, sorry just noticed I didn't reply to your message, thanks for sharing your story with me and for your words of comfort. This is all new to me as well and so hard to distinguish all the different pains. I too have some serious leg pain, is it the meds or is it from the met on L5? One doctor says it's the letrozole, another says it's from the pressure of the met on my L5. Whatever it is it's a pain in my ass, literally! It's hard for me to sit for very long, or stand for that matter. Ugh it's so frustrating! I hope we can both start feeling a little more relaxed with our new diagnosis.
Momonana6, thanks for your prayers. I'd love to dance with NED but I agree, NEP would be good too. Best of luck with your MRI results! Hoping you get the best news! And nothing wrong with being ambitious in the hopes of NED, I think all of us here wish we could achieve that.
Hugs, Annie
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Annie O,
No problem, it is hard to keep up with everyone on these threads, try as we may.
I don't know anything about rads other than I am learning there are apparently several different kinds/methods, but what they are suggesting for you sounds really exciting. The term oligometastases is relatively new to me (meaning I have not googled it to death yet) but when I hear the word curative rather than palliative it sure sounds hopeful! "Prolonged progression free survival" sounds pretty darn good too! I am happy for you. Maybe this will teach us not to always anticipate the worst?!
Could have sworn I saw a thread here all about rads to bone, but can't find it for you now. Hope others will chime in soon who have experience with SRBT to share with you.
Hope you can have a nice restful day tomorrow. Maybe your pain in the ass (sorry if I chuckled at that) can take a day off!
Jo
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KiwiCatMom,I was hoping someone would understand what I meant about more sides!
I have been meaning to thank you for your post way back on page 127 about getting hit by a bus. As a relative newbie to stage 4, I found that post helpful in trying to figure out how to live with this. No busses to run me over here in the hinterlands, but that question, what would I do differently if I knew I only had x amount of time ... has become something I can really use to help me set priorities. Sometimes the answer is nothing. Other times it helps me to realize I am wasting precious time on something trivial and need to move on. It helps. Thank you for that.
I'm not use why, but I think you are in New Zealand? If so, is it spring there yet?
Jo
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You're welcome, Jo. Glad it helped. Just my coping mechanism(s). I'm in New Zealand; been here just over six years. Originally from the US but married a Kiwi bloke (as they say here) and here I am! I'm assuming WI is Wisconsin; I grew up in South Dakota in the Black Hills and have family in Sheboygan. I actually live in a really small rural town outside of Wellington, but I go to the city for work, so I could get hit by a bus.
Out here, more likely to get run over by a cow. But the concept is the same. Annie - good luck with the radiation. That sounds really encouraging!
Hugs to all,
Terre
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Hello everyone,
I struggle by moments with severe pain in my pelvis (where it reaches with the upper inner femur) and have then difficulties to walk. An Rx showed nothing particular besides a lot of arthrosis. Because of my history I asked for an MRI (18 months ago I had it in my lower leg, the echo and rx didn't show anything till a MRI showed a nice collection of 3 tumors around my knee!) .
I realize that most probably it is about the SE of the HT (Femara) but still, this is so confusing. Before the knee mets, I thought the pain in my leg was also due to something innocent and it took a year before DX since I was so called NED 6 years after the initial treatment. I have ILC bone mets, from what I've read this is one that hides itself and thus difficult to find in imagery?
My real questions is that I keep on wondering about being save with Femara, Xgeva (bisfonates) and low tumormarkers?Does it happen that while undergoing this treatment and tumormarkers going down, new mets appear? If so: how many of you experienced this?
Thank you!
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Thanks for all the info on NED. I think I'd be happy if I was NED enough just to my eyes and fingers. So many bumps and lumps it's creepy. Oh well. It is just bumps and lumps. Better there than a major organ.
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Hi Annie,
I found this article which I found very interesting on different types of radiotherapy. Hope this helps.
www.cancer.gov/cancertopics/factsheet/therapy/radiation
Linda0 -
Linda, thanks so much for the article, it was very interesting and I learned so much. I really appreciate you posting that
Hey Terre and Deanna, looks like you were both right, that's exactly why the radiologist wanted to see me. You both hit the nail on the head! I hope I'm making the right decision in going with this type of radiation treatment.
Solala, sorry to hear of your severe pain. This stage IV stuff is all so confusing, and I'm still learning so much. Not sure how to answer your question. I believe new mets can appear while undergoing treatment as this is known as progression. Tumor markers are tricky as they're not always an accurate indication of what's going on in our bodies. I hope some of the more knowledgeable women on this forum will come along and answer your question. Praying your treatment is working for you.
Hugs to all, Annie
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I hate tonite...I have stage IV METS...i live in a 5th wheeler...power goes out.......cuz it's cold single digits...I have propane...and electric heaters...can't put much on cuz it blows a fuse...and it's going to be in the single digits for the next week...OMFG....I don't need this on top of fighting for my sanity daily...HOW IN THE HELL DID I GET HERE...THIS IS SO FUCKED UP RIGHT NOW...SORRY ....CARLA
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Carla,
I wish I could offer you more, but know I am thinking of you. Yes, it does indeed stink.
Caryn
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Hi Carla,Sorry you are having such a bad time. A fifth wheel in the Idaho winter has got to be very rough, let alone with power outage, oh, not to mention having cancer. I don't really know what to say except I feel terrible to think of you being cold and miserable. Warm thoughts aren't worth much, but mine are with you none the less.
Jo
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LindaEThanks so much for posting the link to the rad info. Haven't had a chance to read it thoroughly yet but it looks very informative. Have you gotten bombed with snow and cold in Montreal yet?
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Carla, I have found that one of those plug in electric blankets works good if you don't need your space heated up, just yourself. I don't know if you can get one of these, but I love to warm up the bed before crawling in.
Sorry you're having a tough go of it at the moment but we are all here for you. ((hugs)) Dee
Solala, welcome to the place you never wanted to be, but we all support each other here through good & bad. I don't have any answers for you, but it looks like others can help you out.
Annie, I hope the rads go well for you if you decide that is the right thing.
Hello to everyone else, I hope I didn't miss anyone, Jo, Linda, Caryn, Dune, KCM.... Not much going on with me, just getting through each day. I have a bone scan, TM's & CT scan coming up in December & then onco appt on Dec 24th. I can't believe they are making me travel back & forth down the Malahat hwy on Christmas eve? It's a 3 hour trip each way.
Anyway, DH mumbled something about staying in Victoria on Christmas Eve, that would be great, hopefully we can make that happen. Cheers all, Dee
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