Bone Mets Thread
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whildchild,
I have had contrast/nuclear tracer injections through my port many times over the last 3 years, without a problem. Power ports are designed to handle that. Why would that mess the port up?
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Hi Dunes! Good luck with the scan! Never heard of the numb chin thing, but I'm not doubting it exists.
Happy thought for you - listen to (over and over if necessary) Tom Petty's "The waiting is the hardest part". And sing along. Best advice I can give as I'm neurotic as hell and tend to do web searches too. I've been doing more searches on screaming goats versions of songs and cat videos than cancer stuff these days. Keeps me a little more sane.
Hugs to all,
Terre
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Whildchild, I've had bone mets for over 4 years and recently spots were found on my liver. My lungs are clear. So you might suggest to your onc that he change his statement to "most" find it spreads to the lungs.
Good luck with the VATS.
Leah
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WC,
I didn't know that but I've always gotten a ct and a bone scan so that's good to hear
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My shoulder blade hurts solo much. What helps with the pain? Do I need to be worried that it is going to break or should I do some range of movement exercises?
PET scan in the morning. So I guess I can't take anything for it. Rx meds hurt my stomach unless I eat, and..... Oh I still have time. Pain med here I come!
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Whildchild I have a couple of questions for you. You mentioned Faslodex- do you think it is the faslodex that caused you stomach problems. I have only had my first 3 treatments of faslodex - Day 1, Day 15 and Day 30. 5 days after my last shots my stomach started bothering me and has been pretty bad for 3 weeks now. Due for my next shots in 2 days and wondering how to carry on when can't sleep from the stomach gas and pain. Is the prednisone hard on the stomach too??
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The pain was so bad this morning I got nauseous and dizzy and had to go back to bed. I put in a call to my MO asking for something for the bone pain. I hope something is available because oxycodone isn't touching it. Oh, I get a little stoned from it, but there must be something better. I guess I'll find out. I'll just take ibuprofen today. There's no point taking the narcotic if it doesn't work -- except to constipate me. Do you ladies get something useful for the pain?
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Dune there are a number of pain meds available to us but it may take a combination of them to ease your pain. I know the last thing you really want is to see another doc but you should really consult with a pain specialist rather than try this and that. It is more likely that one of them will get you comfortable quicker.
Love n gentle hugs. Chrissy
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dune, I am so sorry you are feeling pain. When oxy didn't work for bone pain for me I started taking Percocet (oxy and Tylenol) and that knocked the bone pain to a minimum. I hope you find something very soon for the pain
Margie
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Dune- I have the Fentynal patch as a long acting pain med. I use the oxycodone as a fast acting. So if the pain is a little worse on a day I'll take an oxycodone. It's been the only thing that works for me. Another idea is the ladocaine patch. If there is a specific place that hurts like my hip, low back, etc then I put one of those on and it helps too. Like Chrissyb said there is a lot of options and you will find something that works. Good luck and I'll be sending good pain free vibes to you!
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Dune, I'm so sorry about your pain. The pain med that works incredibly well for me -- far better than several others I've tried, many of which also make me spacey and nauseous in addition to only working so-so-- is Acetaminophen+Codeine #3. It's what they put me on after my hip replacement, and was one of the silver linings of that whole experience. I know it doesn't sound particularly strong, but it works like a charm for me when Vicodin, etc., don't. (((Hugs))) and prayers that you get some pain relief ASAP! Deanna
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Hi beautiful ladies! Thank you to everyone that responded to my post! I just finished 5 radiation treatments to my brain (I know, another thread) and that was followed by 15 radiation treatments to my right hip to try and help alleviate the back pain. I finished those up on Mon.. Tues., I hit a wall. Wed., I decided if I need to lie down and rest, I'm going to, and not feel guilty about it! Every day is different. It helps so much to come here and read what someone else wrote, eg., that's normal, that happens, try this.... I've not had radiation prior, so I wasn't sure what to expect, and everyone is different in their reactions. So, again thank you to everyone who responded and your suggestions! You're awesome! :-)
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You are all awesome. Sky, I agree with you on that and on the resting you mentioned. I'm falling asleep right now.
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Sky don't be disappointed if there is not a huge immediate relief from the pain in the hip It took me a few weeks to feel the full effect of the radiation, but it did work. Wish I could nap today. I live in an old house with original plumbing and have workmen jack hammering the concrete floor to replace a broken sewer pipe. Oh well they should be done soon and maybe I will sleep all through the night tonight. I'll do the laundry tomorrow.
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My bone pain relieved with hemp oil mixed in a cream. Really worked! I hardly notice bone pain anymore. It was so bad for awhile that it hurt to stand or walk. Nice being off pain medicine as it makes you so loopy and dizzy.
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Where do you get that Hindsfeet? Is it sold or is it something someone mixes up? Is it topical?
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I just ordered some, but still, please tell me how to use it.
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Hi Gals,
I see there is soo much to catch up on...I started affintor for a couple of days the week before last, and it kind of knocked me out, my port was clogged with a fibrin sheath (it was saved, and cleared by a several hour TPA infusion)...and, then, it was time for the VATS. VATS is an acronym for a minimally invasive procedure where the surgeon makes several small incisions between the ribs and looks inside the chest wall, and outside lining of the lungs (at least in my case) to snip a piece of the pleura. Pleura is the outside lining of the lung. I guess the VATS can be used for a number of different things, so right now, all I know is about this one.
I had it Thursday. It was done under general anesthesia by who I understand to be one of the best lung surgeons in the country. Alas, I met her two weeks ago at clinic. I had to show up yesterday (seems so far away), and was awake while they rolled me into this fancy OR with huge monitors..... I was asked to breathe into a mask, and then I have no memory of who or what happened next. I woke up in some room, and I was so ill last night. MY BP kept dropping, nausea, breakthrough, killer pain....it was pretty horrible. Can you imagine that they expected to kick me out today (like next day). I was not told what was found, nor what happened during the surgery, or much of anything.
It is getting easier today...but, it still hurts...
It is my understanding that the surgeons drained three liters of fluid, put in a pleur-x catheter, and during the procedure had to collapse one lung to take the pleural biopsies....
Ugh... Her resident, who must be from the first year, said to me today, that I did not have major surgery, and this was basically an outpatient procedure where they kept people in for a day, and let them go the next. Now, he rubbed his hands, and said, a lung resection, or wedge was a major surgery. I do not think he has touched a scalpel, yet, or so, I hope. Maybe, he has watched too much Gray's anatomy?
I found out tonight that it can take a while to get the anesthesia out of your system. I am still having a tough time. I was given three or four different pain things: lidocaine patch, fentyl patch, Percoset, and iv toradol...
I will go back when feeling a little better, and see what questions, y'all had for me while I was MIA
During today, I was wondering what on earth caused me to do the VATS? I could have just had a pleur-x catheter placed and be done with it. But, then we would not have had proof positive that it was a malignant pleural effusion caused by the breast cancer. It is my understanding that as the fluid drains, the outside lining of the lung will generate a natural pleurodesis and the outside lining of my left lung will stick to chest wall... I forgot to ask her, if my lung will fully re-expand.
Such a mess. I was a singer... Would love to have some input into how the bone mets gals dealt with this.
I am lucky, I guess that I did not listen to my oncologist, who said to ignore it, and see if the Affinitor aromasin combo will work in three months. Other doctors wanted some type of procedure. I was told by my treating oncologist to wait until I became symptomatic. This surgeon knew immediately, that I was facing a big problem, called the oncologist right away, and somehow persuaded him to let her do it. I guess it was good, if 3 liters of fluid was found, right? Who should I be treated by next, well that is a different train of thought, when I am feeling a little better....
Now, we know that FASOLDEX is not working for me anymore....
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Hi Saskie, I had radiation, then Navalbine, then Fasoldex injections. When they stopped giving me fluids and IV prednisone, I started having tons of problems eating...my clothes were dripping on me, until I dropped to 97 pounds. My oncologist ignored it. I ended up elsewhere in a hospital for over a week. They scoped me and found I had gastritis. I did not get better, or any stomach issues totally under control until I started taking the prednisone. The oncologist at the other hospital looked up the side effects and did find it had what you are describing. Have you asked your onc for some IV fluids, etc., for your treatment. I know that they will probably say no, but hey, it is worth a shot. Try the liquid Mylanta four times a day, and ask for CARAFAT. That did help a lot too.... Hope that helps a little.... Good luck...
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Hi all,
Been traveling a bit so just getting caught up again.
Dune - so sorry you have so much pain! Hope it gets under control soon.
Skylotus - for what it's worth, I had 38 radiation treatments when first diagnosed, then hip/spine ones for the Stage IV. The Stage IV ones wiped me out for weeks, which I understand is common. The 38 treatments made me tired during, but I bounced back fast. The Stage IV ones left me fatigued for a good six or eight weeks. So naps are definitely a good thing! I have a friend who went through brain rads and reported the same as my Stage IV rads - tired for quite a while, but bounced back after a few months.
Whild - hope you get some relief and feel better soon. What a crap hospital experience!
I have a bone scan Monday. Hoping for good results as I ache, ache, ache. Not sure if it's the crap hotel bed, arthritis, or just stress. Hoping it's not recurrence - should know soon.
Hugs to all,
Terre
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Good luck Terre! Great that you will find out soon.
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Good luck Terre! Great that you will find out soon.
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Thanks, Dunesleeper! May see if I can find hemp oil too. Started on Curcumin today. Tired of achy bones and joints!
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Good luck with the curcumin. It seems to have helped many but didn't work for me.
Caryn
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Terre, hopefully the aching is nothing more than overdoing things, which can easily happen when you're traveling -- lugging luggage around, walking a lot more than usual. Anyway, hope that's all it is!
I also take curcumin -- not so much for pain, although it would be great if it's tied to the pain relief I've had in recent weeks. But it's also suppose to be a great anti-cancer herb -- possibly b'cuz of its anti-inflammatory effect. I had used the one by Paradise Herbs for a couple of years, but recently switched to Life Extension's Super Bio-Curcumin, which seems more potent. Just thought I'd mention that for you Caryn, because I do think there can be a difference in brands.
Here's an article about its ability to actually fight cancer. http://www.lef.org/magazine/mag2011/mar2011_How-C...
Deanna
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Thanks, Deanna and Caryn. I had read about the cancer fighting thing too, so thought I'd give it a go. MO said it was ok. I shouldn't be so whiny about pain; I'm only on a generic version of Celebrex and a prescription strength Naproxin a day. No narcotics yet. MO said if the generic Celebrex didn't do it for me, he'd try me on a non-funded arthritis med. The cost is only $40 a month, so definitely do-able. I bought a wrist support as well; have read that wearing it to bed may help with the hand pain. Part of my being whiny is that my right hip now hurts and that's scary since the left hip pain was what led to the initial Stage IV diagnosis. MO says the places where I hurt are typical Femera SE sore spots. So, fingers crossed!
Hugs to all, and thanks again.
Terre
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Terre,
I switched to Femara after 2 1/2 years on Arimidex because my knee pain got worse. Clearly it wasn't truly horrible be sues I only took Aleve for it and not even daily. I've been on Femara a bit over 2 months and the knees are better.
Deanna,
Checked out the life extension products and I may give it a go. They carry all the other supplements I take, melatonin, D3 and calcium citrate so I may try a membership as well. Thanks!
Caryn
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I just got really worried about my right rib pain. It lit up in the PET scan, so I know what it is and am of course concerned. What really got me though was the horrible pain I got when I did a little burp. I thought OMG what if I get sick? Coughing? Sneezing? I don't think I could bear that pain with frequency. I guess I better put my feet under the sheet. Please God, don't let me get sick before we can get the rib mets to retreat.
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Whildchild, I just read through your hospital experience. Yikes! That sounds pretty awful. And I just hate it when docs don't agree on what's best for us. It can make it so hard to proceed down any path with confidence that it's the right one. But, clearly, getting 3 liters of fluid removed has got to make you feel 1000x better than you had -- especially after you get the anesthesia out of your system.
dunesleeper, let us know if the hemp oil helps with your rib pain. I bookmarked some on eBay after Hindsfeet mentioned it, but haven't purchased it yet. I'll be curious to know if it works for you as well as it does for her. I think she reported hers is blended with coconut oil, but I don't know the ratios. Excruciating rib pain during a horrible bout of bronchitis was what revealed my mets. Back then, one of the things that helped me were lidocaine patches. You might want to ask about them if you're not already using something like that directly on the painful areas. Deanna
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Thanks, Caryn. My arthritic knee is the worst and I know it's arthritis (described as bone on bone) and I need a knee replacement. Or at least a cortisone shot, which my GP is supposed to be arranging, but he takes FOREVER. So, since I limp, everything else is off kilter and it all hurts, etc. My arthritis has just been bad lately and I'm not sure why. So of course, the increased pain leads to increased fear which probably leads to increased pain, etc. Will be good to have the bone scan done and results in so we can find a path forward. The generic celebrix helps a bit but I'm thinking it will be worth $40 a month to try the "real" thing and see if it helps.
Take care and hugs to all,
Terre
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