Bone/joint pain
After 11 years, i have had a recurrence. It has metastasized to the bone. My oncologist has prescribed Letrozole and Ibrance. I have been having bone/joint pain. Most of the pain is in the hips and right rib cage. It's difficult to walk and arise from a sitting position. I take 2 ibuprofen every 12 hours and 2 ES Tylenol in-between. That helps but not completely. We like to travel and I have a hard time walking distances. My oncologist doesn't seem particularly concerned about this. I need to address it FIRMLY next visit. Is anyone out there experiencing a similar problem? And if so, what are you taking/doing for relief?
Comments
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I had terrible joint pain from letrozole. I changed brands & it helped a lot. I've not started Ibrance yet, so can't speak to that drug.
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The letrozole with the fewest SE's--due to its shortest list of inactive ingredients--is the generic from Roxane, among the cheapest as well. Next best is Novartis’ brand-name Femara (ridiculously overpriced), then Teva (generally the easiest-to-tolerate generic drugs across the board, not just AIs). Some people do okay with Accord, but Sun is usually the roughest to handle.
Some people report relief of bone pain during chemo, after Prolia/Xgeva shots or Zometa infusions, and from AIs, with OTC loratidine--whether Claritin or generic. Not sure if loratidine is unique or cetirizine (Zyrtec, same class of non-drowsy long-acting antihistamines) would work as well.
2 ibuprofen every 12 hrs. is way too low a dose of NSAIDs to maintain a clinically-effective blood level of the drug. It is supposed to be taken every 4-6 hrs., as is ES Tylenol. They are two different classes of drugs, so you don't need to alternate between them (indeed, you are probably wasting your money by doing so). When I was rehabbing after my knee replacement surgeries and weaned off opioids, tramadol and gabapentin, an orthopedic-surgery nurse in the UK who helped found the Bonesmart.org website and moderated its discussion boards came up with a combo she called the “Bonesmart Cocktail:" two each ES Tylenol and ibuprofen every 6 hrs. If you want to take an NSAID only twice a day, switch to naproxen sodium (Aleve or OTC generic). You can safely take up to 4 gm. (4000 mg) of Tylenol a day, but some authorities recommend not exceeding 3 gm., especially if you have liver issues. You might want to, instead of two ES Tylenol every 4-6 hrs, take two 650 mg. "Arthritis Formula" time-release acetaminophen every 8-10 hr. I take two of those at bedtime and switch to one 200 mg. celecoxib (aka Celebrex, not yet OTC) in the morning--as a COX-2 inhibitor, it is a much gentler NSAID on your gut. I don't have bone pain per se, as I'm only on letrozole (just joint pain); but it definitely helps ameliorate my hip pain from the bursitis caused by a gluteal injury 2 yrs ago, my stiff lower back, any residual knee or thigh ache (despite having "bionic knees") and especially my trigger thumb from letrozole.
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The only thing with joint pain is you want to rule out osteoarthritis, and not just blame SEs. If you have OA then popping pills will be a waste as the only thing that fixes that is sx as pills eventually won't work.
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Not necessarily--there is definitely an inflammatory component to OA, albeit nowhere near as much as with RA. I could not have managed without pain management (both oral and topical) as long as I did before getting my TKRs and after weaning off the post-surgical prescription analgesics. It’s recently been shown that arthroscopic meniscal-repair surgery is no more effective than analgesia, PT and time; and as far as joint replacement surgery, it is nothing to be taken lightly. Though I wish I’d done it earlier, and glad I did it, there are still very real complications such as infection, DVT (or even PEi) and possibly having to go for revision surgery should infection happen or trauma loosens the implant. One is also under general anesthesia for 2-4 hrs, or longer, a hospital stay of at least 48 hrs (if not longer) is necessary, and often an inpatient rehab stay of 10-14 days if it is impossible (say, because of stairs to the front door and/or lack of transportation) to go for PT and OT twice a day. (Initial PT often requires equipment most people’s homes lack).
If joint pain is symmetrical and evenly distributed over most types of joints, OA is highly unlikely, and AIs a more likely culprit. And so is RA if there is no deformation of the joints (and blood tests rule it out). And pain management is still important for both types of arthritis.
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Opiods may be your best bet with the bone and joint pain. I would not suffer one minute more than you have to. Ask to be referred to a pain management doctor who may prescribe a drug that works for you as they know all about how to manage chronic pain as it is all they do.
Chronic pain is very debilitating and can wear you down faster than anything and really affects your health in a big way, not to mention your quality of life. Don't worry about addiction. You are Stage IV and no one will judge you. Besides, the label addict is wrong for those of us who take an opioid that is legally prescribed and taken in the dose it is prescribed for. The term should be "dependent" not "addicted" so don't let that voodoo word scare you from getting relief.
Hugs!
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Chi, don't mean to rain , but Tylenol is acetaminophen also known as APAP on scripts. You got it right, but not sure someone else got that from the post. Discussion on dose has been vacillating between 2400 and 4000mg in a 24 hr time period for years.
Acetominophen/Tylenol not only has liver effects, but kidney too. When the dose is overwhelming to the kidney liver system in the individual, there can be failure of one or both systems. Not pretty to watch. Hate the treatment-stinks(literally).
Titrating to lowest dose is a consideration b/c the science hasn't made up the finale story. If the end story is that 2400mg is the safest, and one has been on the 4000 mg level, damage may not show up for a long time. And by that time the damage maybe irreversible.
going to try to decipher the dosing you recommended.
Chi from your post "2 ibuprofen every 12 hrs. is way too low a dose of NSAIDs to maintain a clinically-effective blood level of the drug. It is supposed to be taken every 4-6 hrs., as is ES Tylenol. They are two different classes of drugs, so you don't need to alternate between them (indeed, you are probably wasting your money by doing so). When I was rehabbing after my knee replacement surgeries and weaned off opioids, tramadol and gabapentin, an orthopedic-surgery nurse in the UK who helped found the Bonesmart.org website and moderated its discussion boards came up with a combo she called the "Bonesmart Cocktail:" two each ES Tylenol and ibuprofen every 6 hrs. If you want to take an NSAID only twice a day, switch to naproxen sodium (Aleve or OTC generic). You can safely take up to 4 gm. (4000 mg) of Tylenol a day, but some authorities recommend not exceeding 3 gm., especially if you have liver issues. You might want to, instead of two ES Tylenol every 4-6 hrs, take two 650 mg. "Arthritis Formula" time-release acetaminophen every 8-10 hr. I take two of those at bedtime and switch to one 200 mg. celecoxib (aka Celebrex, not yet OTC) in the morning--as a COX-2 inhibitor, it is a much gentler NSAID on your gut."
"2 ibuprofen every 12 hrs. is way too low a dose of NSAIDs to maintain a clinically-effective blood level of the drug. It is supposed to be taken every 4-6 hrs" What mg strength are you talking about? OTC or prescription strength? Total dose in 24 hours is?
ES Tylenol is 500mg. Brit gal recommends 2 every 6 hours= 4000mg/24hr. Plus Ibuprofen assuming OTC @ 200mg q 6hrs for 800mg /24. Right?
Tylenol be a bit suspicious of and careful. Choose the lower end of the dose.
Arthritis formula timed release acetaminophen-- 2 every 8hrs @ 650 mg = 1300x3= 3900 mg. Right?
" celecoxib (aka Celebrex, not yet OTC) in the morning--as a COX-2 inhibitor, it is a much gentler NSAID on your gut." No Celebrex is not gentle. I'll bring back the black box warning and it'll scare the shit out of you. First the general NSAID warning in the next box. Then the next box after that the Celebrex black box warning.
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FDA Drug Safety Communication: FDA strengthens warning that non-aspirin nonsteroidal anti-inflammatory drugs (NSAIDs) can cause heart attacks or strokes
- [ 7-9-2015 ]
Safety Announcement
The U.S. Food and Drug Administration (FDA) is strengthening an existing label warning that non-aspirin nonsteroidal anti-inflammatory drugs (NSAIDs) increase the chance of a heart attack or stroke. Based on our comprehensive review of new safety information, we are requiring updates to the drug labels of all prescription NSAIDs. As is the case with current prescription NSAID labels, the Drug Facts labels of over-the-counter (OTC) non-aspirin NSAIDs already contain information on heart attack and stroke risk. We will also request updates to the OTC non-aspirin NSAID Drug Facts labels.
Patients taking NSAIDs should seek medical attention immediately if they experience symptoms such as chest pain, shortness of breath or trouble breathing, weakness in one part or side of their body, or slurred speech.
NSAIDs are widely used to treat pain and fever from many different long- and short-term medical conditions such as arthritis, menstrual cramps, headaches, colds, and the flu. NSAIDs are available by prescription and OTC. Examples of NSAIDs include ibuprofen, naproxen, diclofenac, and celecoxib (see Table 1 for a list of NSAIDs).
The risk of heart attack and stroke with NSAIDs, either of which can lead to death, was first described in 2005 in the Boxed Warning and Warnings and Precautions sections of the prescription drug labels. Since then, we have reviewed a variety of new safety information on prescription and OTC NSAIDs, including observational studies,1 a large combined analysis of clinical trials,2 and other scientific publications.1 These studies were also discussed at a joint meeting of the Arthritis Advisory Committee and Drug Safety and Risk Management Advisory Committee held on February 10-11, 2014.
Based on our review and the advisory committees' recommendations, the prescription NSAID labels will be revised to reflect the following information:
- The risk of heart attack or stroke can occur as early as the first weeks of using an NSAID. The risk may increase with longer use of the NSAID.
- The risk appears greater at higher doses.
- It was previously thought that all NSAIDs may have a similar risk. Newer information makes it less clear that the risk for heart attack or stroke is similar for all NSAIDs; however, this newer information is not sufficient for us to determine that the risk of any particular NSAID is definitely higher or lower than that of any other particular NSAID.
- NSAIDs can increase the risk of heart attack or stroke in patients with or without heart disease or risk factors for heart disease. A large number of studies support this finding, with varying estimates of how much the risk is increased, depending on the drugs and the doses studied.
- In general, patients with heart disease or risk factors for it have a greater likelihood of heart attack or stroke following NSAID use than patients without these risk factors because they have a higher risk at baseline.
- Patients treated with NSAIDs following a first heart attack were more likely to die in the first year after the heart attack compared to patients who were not treated with NSAIDs after their first heart attack.
- There is an increased risk of heart failure with NSAID use.
We will request similar updates to the existing heart attack and stroke risk information in the Drug Facts labels of OTC non-aspirin NSAIDs.
In addition, the format and language contained throughout the labels of prescription NSAIDs will be updated to reflect the newest information available about the NSAID class.
Patients and health care professionals should remain alert for heart-related side effects the entire time that NSAIDs are being taken. We urge you to report side effects involving NSAIDs to the FDA MedWatch program, using the information in the "Contact FDA" box at the bottom of the page.
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Celebrex black box warning from monograph. It has a more serious systems affect than the other NSAIDS. Source dailymed... https://dailymed.nlm.nih.gov/dailymed/drugInfo.cfm?setid=8d52185d-421f-4e34-8db7-f7676db2a226
DailyMed is one of my fav resources. I highly suggest it as a "first to go to" med site.
"WARNING: RISK OF SERIOUS CARDIOVASCULAR AND GASTROINTESTINAL EVENTS
Cardiovascular Thrombotic Events
- Nonsteroidal anti-inflammatory drugs (NSAIDs) cause an increased risk of serious cardiovascular thrombotic events, including myocardial infarction, and stroke, which can be fatal. This risk may occur early in the treatment and may increase with duration of use. [see Warnings and Precautions (5.1)]
- CELEBREX is contraindicated in the setting of coronary artery bypass graft (CABG) surgery. [see Contraindications (4) and Warnings and Precautions (5.1)]
Gastrointestinal Bleeding, Ulceration, and Perforation
- NSAIDs cause an increased risk of serious gastrointestinal (GI) adverse events including bleeding, ulceration, and perforation of the stomach or intestines, which can be fatal. These events can occur at any time during use and without warning symptoms. Elderly patients and patients with a prior history of peptic ulcer disease and/or GI bleeding are at greater risk for serious (GI) events. [see Warnings and Precautions (5.2)] "
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Judy, I agree with April. I just noticed that you signed RN after your name. Does that mean Registered Nurse. I'm an old RN. You can probably tell. LOL. Good luck..... pain sucks. I'm an old Post Polio with pain all my life. Learned lots of coping mechanisms. The AI's did me in. I "failed " all three. I was on a fentanyl 25mcg patch which worked super well. Taking the pain from a 10 to a manageable say 6-7. Weaned off the fentanyl after a few months off the last AI. 6-7(sometimes even 4-5) may seem okay, but it gets tiresome on the body.
But I, also, ended up finding out I had a rare CYP450 metabolism of the 3A4 and 3A5. I should have been on a lower dose of the AI's. My "intolerance" is way different b/c of the rare metabolism. At the time I quit the AI's the 3's weren't known. It was a QOL issue. Retrospectively, I was doing dose dense AI's. Much of the damage done by the AI's was reversed after a time. Now I just have the old Post Polio pain. I used to hate it, now not so much after experiencing AI pain over the top of it.
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Just another note about Tylenol and NSAIDS. They can lead to permanent Hypertension(HTN)--elevated BP. That then must be controlled with anti-hypertensives for life. Journal of Hypertension, Aug 2005. I was dx'd with HTN feb 2006. I was suspicious of Tylenol simply b/c it was my only routine drug at that time. That's when I found the JH study. It was on women. A follow up was done on Men which was published in 2007 and came up with the same conclusion. CHIT< CHIT< CHIT.
That's why I am way suspicious of Tylenol, then shortly after that I had a chickie who ate her Percocets like candy. She had both liver and kidney failure. She did recover. I studied Acetominophen like crazy. I got the hospital to finally set "guardrails on dispensing", to not exceed the 4000mg dose. That was a couple years before the controversy started. As I said above the controversy since has been to lower the dose. To much waffling, think low.
BUT with the guidance of you doc, you come to a plan. You do what you have too. But it's always better to know consequences than to go into something blindly, and then say "I wish I would have known".
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Sorry, one more brain cell thought. No NSAIDS or Tylenol with alcohol. Usually what you will see is before and after alcohol. But I was working on something and in this study it said "The metabolites of NSAIDS could be found in the blood up till 5 days later". I looked at that being a liver protective person and thought " Chit, when could I safely drink?" Couldn't find and answer then. It may be out there now. I have no hankering to find it. I'm in the situation now that I don't or rarely take Tylenol or NSAIDS. Likely, some ones saying "CHIT" right now reading this. Sorry. Google NSAIDS, Tylenol, and alcohol. Sift through the most recent 10-20 articles and see what the consensus is. Don't be surprised if it takes you triple to find articles that exactly answer your question. Be patient you will find it.
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Liver warning
This product contains acetaminophen. The maximum daily dose of this product is 10 capsules (3,250 mg) in 24 hours for adults or 5 capsules (1,625 mg) in 24 hours for children. Severe liver damage may occur if
- adult takes more than 4,000 mg of acetaminophen in 24 hours
- child takes more than 5 doses in 24 hours, which is the maximum daily amount
- taken with other drugs containing acetaminophen
- adult has 3 or more alcoholic drinks every day while using this product
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I am taking the Ibuprofen as directed by my oncologist. I added the Tylenol in between, on my own.
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Yes, I have osteoarthritis but this pain is unique and not like my usual arthritic pain
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I was on opioids at first but the relief was no better than the Ibuprofen. And of course, along with opioids comes constipation.....
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Something or other will eventually kill every one of us. No one here gets out alive. The question is, how much pain are we willing to endure, and for how long, till that happens?
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Judy, My pain was so crippling that's why we went to Fentanyl. It was considered such a low dose 25 mcg. I just knew by hx that I had to take the lowest dose of most drugs. After I was off fentanyl quite some time was when my 3's were tested. BUT I had a friend here who's pain was off the charts. I suggested she talk with her pain doc. She went on a low dose. She was quite successful. Both of us used opioids rarely.
In the USA Fentanyl choice is still by the practitioner. I always say that b/c Canada's rules are very different.
Pros and cons about going to a pain mgt specialist. Tired now, need to rest.
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Yes, Iam a registered nurse (retired). I'm not keen on Tylenol but take it inbetween the Ibuprofen even though I know it won't help with inflammation. My oncologist told me to only take 2 Ibuprofen q 12 hrs. I'm sure he is concerned with kidney function and yes, an increased risk of stroke. As far as GI issues, I've been taking NSAIDs for years for arthritis and have never had an issue. I've considered asking for Tramadol next visit.
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Hi JudyKRN
You'd better read this before you start Tramadol.....
http://www.peoplespharmacy.com/2012/03/18/tramadol-side-effects-and-withdrawal-are-daunting/ -
mari, nice link.
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Thank you, it's a good website. They send me the latest.
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I plan to discuss this and other options with my oncologist
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Yes something or other will do us all in. Stage 4 recurrence with bone mets makes that all too real. I was just diagnosed in April. I'm still processing it all. This new normal. Still trying to find a tx right for me. Still weighing what quantity vs quality of life means to me. I know I have much to think about. Pain just being one aspect. This isn't my first rodeo....
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Judy, bone mets where? Important. Where are you being treated. Have you had surgery yet? Hormone status.
Sorry about hijacking your thread yesterday. The danger on the boards is misinformation. Chi meant the best and she's a smart lady. What she does may work for her, but overall there was problematic info. Hospital admissions for complications related to medicines are in the millions yearly as you likely know.
The NSAIDS and Tylenol are responsible for many. GI, liver and kidney.
Sorry your here, but nice to have another nurse.
You likely will get the best info on every thing on the bone mets thread. They are also social. A community within a community. That happens all over BCO.
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No surgery. Tumor is inoperable. There are areas of bone mets in the torso area. No organs are involved and the brain MRI was okay. I am being treated at Delnor Hospital, in Geneva Illinois. They are part of the Northwestern group. I went there for my initial treatment, 11 years ago. My surgeon is wonderful.
I'm well aware of the potential dangers of NSAID's and Tylenol. And I'm sure that's why my oncologist is being very cautious with dosing.
Next visit, at the end of the month, my oncologist will check my tumor markers. Hopefully the have decreased in number.
Thanks!
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Judy, I would like to weigh in on this as well. I am also stage 4 to bones. I have osteopenia, arthritis, and degenerate disk disease along with the mets to the thoracic spine, ribs, femur and iliac. I am in the healing process but I must agree with Chi as I can safely take 800 Ibuprofen 3 times a day to manage my pain (inflammation) and it works like a charm. My liver function and kidneys numbers are normal and I have asked my MO a zillion times about the dose and long term use she has prescribed for me. I was able to wean to 400 three times a day but because of my degenerate disease (sciatic) I cannot eliminate the NASAID anything below that. The letroaole and Ibrance combo (prob more the Ibrance) has caused me to have some neuropathy in my thoracic spine where the mets are healing. Gabapentin has really helped with that as well. I would ask her again if you could increase the ibuprofen and if not I would ask her why- I don't even take an antacid. I also would suggest using liquid Advil- it's easier on your stomach and works faster and better.
Carol
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LovesMaltres, I am happy that that dosage is working for you. As a nurse, I do worry about the new research regarding taking ibuprofen and the increased risk of stroke. I have never had a GI issue, either. I've been taking Ibuprofen, as needed for many years for my osteoarthritis. I do plan on asking my doctor, next visit, about pain management…..
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Just to clarify, the dose of ibuprofen to which I was referring was the OTC dose of 200 mg. per tablet. If your onc is giving you the Rx dose, well--in the words of Roseann Rosannadanna--“that’s very different...never mind.” ;-)
There are tradeoffs to be made with every single drug we take....or our decisions not to take them. Everyone’s health priorities are individual.
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JudyKRN- I sure hope you get pain under control. So important to feel the best you can while on this journey.
The Bone Mets thread has a lot of great information if you want to venture over. I dealt with some pretty horrific femur pain before I knew that the cancer had made its way almost through the cortisol bone. I ended up with a rod in my leg to Stabilize it so I could get rads --and that pain is obviously way different then what Advil can help with. I just wanted to clarify.
Chi- My MO rx'd 800 3 times a day but said the liq OTC was the best route-Nothing worse than those great big 800 horse pills. The liquid OTC really work fast.
We never discussed stroke issues just the liver and kidneys and stomach issues. I will ask her about that as well.
Carol
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CHi, I happened to catch "Johnny".(Brain lapse) When he asked her about the Rosanna thing of "never mind" She said it was her Grand mothers thing. She called her Grand from the stage. It was a hoot and GREAT. Grandma said "Never mind" So, loved Gilda
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