Bone pain with MBC/Mets in Bones. - SHARE Metastatic ...

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Bone pain with MBC/Mets in Bones.

rpeacock
rpeacock

Does anyone have bone pain? I hurt mostly in my rib cage, from the front to the back of my body , in my low back mostly but lately my back. For years I WAS active and worked out doing body pump, squats with weights, etc. I know from the first time having cancer that hurting for an extended time can be depressing,

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That is where my pain is as well. Some days are not as bad as others. What do you do for pain relief?

xo Jade

rpeacock
rpeacock in reply to Wintervt

Tramadal

I have bone pain also, pretty severe. I am on a Fentanyl patch, and Dilaudid for break through pain as well as an anti inflammatory, Celebrex. My insurance just denied the Celebrex and I’m starting to feel more pain in my ribs so I’m going back to Naperson for it’s inflammatory affect. It’s hard to be in pain but my oncologist is all for a good quality of life so he is willing to prescribe opioids. It doesn’t seem quite fair to keep us alive just so we can hurt! I’m pretty stable on the Fentanyl and don’t take many Dilaudid, so after a trip to Europe this fall we are going to try reducing my Fentynal. We shall see what happens. I’m willing to try, I just don’t want to hurt to the point that I do less than I do now. I mostly hurt in my ribs and lower back.

Elaine

rpeacock
rpeacock in reply to Red71

How long have you had Bone Mets? Or is that your diagnosis?

Red71
Red71 in reply to rpeacock

I’ve had bone mets since I was diagnosed with MBC, about a year and a half. I have no other metastasis except a node under my arm which was fantastic for biopsy but has now disappeared with treatment. I am NED, but despite that the pain does not go away. My doc said my bones were damaged enough that I now have chronic pain that will never completely go away. Elaine

Barbteeth
Barbteeth in reply to Red71

Hi

I take opioids of varying strength and have to avoid alcohol but when my daughter got married a few weeks ago...I stopped them for a few days so I could drink...if you can’t get tipsy at your daughters wedding it’s a pain

Surprisingly I coped...the alcohol must have dulled the pain plus all the stuff that was happening was a distraction from it

Since then I’ve cut down a bit but bump up the dosage when I’m active

I tried butrans morphine patches but they weren’t brilliant so I ended up supplementing with other painkillers and ended up off my head...couldn’t concentrate not hungry and asleep for 12 hours every night with naps during the day...can’t live like that

I read somewhere that Ibrance and fentanyl weren’t a good combo?... however if you’ve had them prescribed then must be ok

All the best and have a fabulous trip to Europe...hope you visit Italy...my favourite country

Barb xx

Red71
Red71 in reply to Barbteeth

We are going to Eastern Europe on this trip. A Viking River Cruise from Budapest to Bucharest and then Vienna as I’ve always wanted to go there. It’s late in the year but I prefer to go when the weather is cooler because I get such terrible hot flashes if it is hot and humid. I’d rather have it cold enough to wear a coat!

No problems with the Letrozol and Ibrance combo with Fentanyl that I’ve heard of. I was afraid in the beginning that I would feel awful because most pain meds do make me feel weird in a bad way but I was also on Prednisone when they started me on it and in someway it is helpful with the pain med side effects. So my resting state is pretty pain free and I can take Dilaudid if I Garden or do anything really vigorous that makes me hurt more but I don’t need much extra. After the trip we are going to try to cut the Fentanyl dose in half. I’m not looking forward to that but I would like to be a little less exhausted and I don’t know how much of that is Ibrance and how much is pain med. Life is always an experiment! Well, off to the grocery store, which required extra pain medication in the beginning but no longer does, so that’s an improvement.

Elaine

Barbteeth
Barbteeth in reply to Red71

Hi Elaine

You will adore Vienna...we visited s few years ago and I was blown away...if you get chance to visit the natural history museum it’s breathtaking...so much art and beautiful buildings as well

I looked up about Fentanyl with Ibrance and it said that you probably need a lower dose of fentanyl as Ibrance seems to exaggerate the effects

All the best

Barb xx

Red71
Red71 in reply to Barbteeth

Interesting about the Fentanyl dosage. The lowest is 25 mcg/hr and I am on 50 so I can only go one lower! But I’m willing to try after I come back from my trip. Not willing to experiment before that!

Barbteeth
Barbteeth in reply to Red71

Yes make sure you’re comfortable especially when travelling...enjoy your holiday then rethink

Barb xx

Bone pain from mbc can be especially difficult to contend with and too often is under-recognized and/or under-treated. Below from my book, "The Insider's Guide to Metastatic Breast Cancer" (which is also available in a complimentary .pdf) is an overview of therapies. For more information, please visit insidersguidembc.com/about

I hope this helps!

•Antidepressants. Certain medications called “tricyclic antidepressants” have been found to help relieve pain by interfering with chemical processes in the brain and spinal cord that causes a person to feel pain. Examples include Amitriptyline, Doxepin and Nortriptyline (Pamelor). Additionally, some people experienced a significant decrease in neuropathy-induced pain when they took a prescription antidepressant drug called Cymbalta (Duloxetine).

From: mayoclinic.org/diseases-con...

•Anti-seizure Medications. Certain medications such as Gabapentin (Gralise, Neurontin) and Pregabalin (Lyrica), which were developed to treat epilepsy, may relieve nerve pain. From: mayoclinic.org/diseases-con...

•Low Dose Naltrexone. Naltrexone is an opiate antagonist currently available in a daily 50-mg tablet dose for the treatment of alcohol and opioid dependence. But in addition to opioid receptor antagonism, the drug also appears to exert anti-inflammatory effects via a separate mechanism targeting microglial cells (cells found in the central nervous system [CNS] that remove damaged neurons and infections and are important for maintaining the health of the CNS). Paradoxically, the Naltrexone dosage found to reduce pain is roughly one tenth the substance abuse treatment dose, around 4.5 mg per day. The low-dose version is not approved by the FDA and must be specially compounded. In studies of several known inflammatory conditions, including inflammatory bowel disease and multiple sclerosis, LDN reduced both self-reported pain and objective markers of inflammation and disease severity. Dr. Bruce Vrooman, an associate professor at Dartmouth's Geisel School of Medicine, stated that with regard to treating some patients with complex chronic pain, low-dose Naltrexone appears to be more effective and well-tolerated than the big-name opioids that dominated pain management for decades. (That said, the use of low dose Naltrexone in cancer patients with chronic pain may warrant further study). From: medscape.com/viewarticle/89...

•Muscle Relaxers: Muscle Relaxers such as Flexeril (Cyclobenzaprine) can help to alleviate painful muscle spasms. Potassium and magnesium supplements can also be helpful in relieving muscle cramps, as can Epsom salt baths.

•Nerve Blocks (including Epidurals): Specialized treatment involving the injection of a nerve-numbing substance may be used. This may help prevent pain messages traveling along that nerve pathway from reaching the brain.

•Over-The-Counter (OTC) and prescription-strength pain relievers include Aspirin, Acetaminophen (Tylenol) and Ibuprofen (Advil, Motrin).

•Pain Pump: A pain pump may be a viable consideration when oral and IV pain medications fail to control pain adequately. The pain pump is an implanted drug infusion system that releases prescribed amounts of pain medication directly to the pain receptors (nerves) near the spine. The entire system consists of a pump and a catheter. The pump, whose purpose is to store and deliver pain medication, is surgically placed in the abdomen. The catheter is inserted into the intrathecal (spinal canal) space surrounding the spinal cord. The catheter is then connected to the drug pump. The doctor fills the pump with pain medication using a needle. The pump sends the medication through the catheter directly to the spinal area where pain receptors are located. Patients return to their doctor for more medicine when the pump needs to be refilled. Before having the pump implanted, an epidural screening test provides a temporary evaluation period so that patients can determine whether the targeted drug delivery truly relieves the pain. It is worthy to note that the system can be turned off, or surgically removed, if eventually desired.

One person with bone metastases broke several ribs due to severe coughing and decided to have a pain pump inserted. She was also allergic to several pain medications and has had no allergic reaction to the four the medications in the pump. After three years of living with the pump, she claims not to have experienced side effects such as drowsiness or constipation because the drugs bypass the digestive system, and the dosage is a fraction of the norm (since the drugs are delivered directly to the pain receptors). She has the pump refilled every two months and can administer an extra injection if necessary. In summary, she claims to be much more comfortable than she had been before she used the pump. More information about pain pumps is located at medtronic.com/us-en/patient...

•Strong Opioids medications include Morphine (Avinza, Ms Contin, others), Oxycodone (OxyContin, Roxicodone, others), hydromorphone (Dilaudid, Exalgo), Fentanyl (Actiq, Fentora, Subsys [an under-the-tongue spray] and others), Methadone (Dolophine, Methadose), and Tapentadol (Nucynta). Tramadol (Ultram) is a painkiller similar to opioids. Some other painkillers are:

oHysingla ER is another strong opioid, which has the same active ingredient (hydrocodone) as Zohydro ER, the only other approved extended-release hydrocodone product. There are important differences between the two drugs. Hysingla ER has approved abuse-deterrent labeling, while Zohydro ER does not. Also, Hysingla ER is taken every 24 hours, whereas Zohydro ER is taken every 12 hours, and therefore comes in lower dosage strengths. From: pharmacist.com/article/fda-...

oTarginiq ER, which was FDA-approved in 2014, is a new opioid that is an extended-release/long-acting opioid analgesic to treat pain severe enough to require daily, around-the-clock, long-term opioid treatment and for which alternative treatment options are inadequate. Targiniq ER has properties that are expected to deter, but not totally prevent, abuse of the drug by snorting and injection. In addition, the Naloxone in Targiniq ER blocks the euphoric effects of oxycodone and helps circumvent the constipation that usually accompanies the ingestion of opioids.

oZohydro ER is a new extended-release, oral opioid indicated for the management of pain severe enough to require daily, around-the-clock, long-term opioid treatment.

•Weak Opioids (derived from a drug called Opium) such as codeine

Many of the above medications are taken orally, so they are easy to use. Medications may come in tablet form, or they may be made to dissolve quickly in the mouth. However, if a patient is unable to take medications orally, they may also be taken intravenously, rectally or through the skin using a patch.

Other therapies such as Acupuncture, Acupressure, Massage, Meditation, Physical Therapy, Yoga, and other relaxation techniques may also help to alleviate pain.

Francesca10
Francesca10 in reply to Bestbird

Thanks for all the info. A word of caution- I had Pt for acute sciatica pain which made it worse. After appts with several doctors I was told no Pt for mbc with bone Mets.

It was not a good experience-and I didn’t know that as a nurse and wasn’t told not to do it.

Just sharing my experience.

rpeacock
rpeacock in reply to Francesca10

Thank you

Interesting about the PT. I’ve been having neck, shoulder and arm pain. I do have many bone Mets through my spine, pelvis. They want me to go to PT be they feel this problem could be a pinched nerve. I don’t know if that’s a good idea with bone Mets after reading your post?

girlsptz
girlsptz in reply to Klamato

Kathy I have bone mets in my neck, shoulders, total spine, sternum, pelvis, anterior and posterior ribs and both hips. I was told in no circumstances to do PT or chiropractor due to the potential of fracturing. Maybe it's because my disease is so extensive and I have had multiple pathological fractures while being very careful. When you say 'they' though do you mean your oncology team? If so then perhaps they deem it is safe for you. Just be absolutely sure before you do it. Good luck.

Sandra

Red71
Red71 in reply to Klamato

I had PT for general strengthening and balance after being pretty much chair bound for 4 months due to extreme pain. After radiation to the back mets that were causing the pain, and after I recovered both from the extreme pain and the radiation fatigue, I had PT, but the therapists were aware of my mets and didn’t do anything that would make them worse. It was really helpful.

I have been on Ibrance and Letrozole and Xcheva shots for 3 years and 8 months. I do not have any bone pain. I have subtle discomforts in my back for a moment or two. But that is it.

:-)

Thank you so much for sharing. Knowing you have been on the exact same meds as me and for a longer period of time really helps.

Klamato
Klamato in reply to rpeacock

I have had the very same treatment for a year and a half and I don’t have any problems with it! Good luck

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