Living with pain and remaining optimistic

[youngfarm]

Have experienced MBC since 2005. Am male, age 75, and losing use of vertebrae due to continued invasion. Scheduled to begin afinitor + aromasin in 12 days. Not a pleasant experience.

[Crazydentist]

Hi

Wow you’ve done really well..you were the same age as me when you were diagnosed

My mbc was discovered after an X-ray to investigate pain in my spine..I had been clear for 24 yrs from original diagnosis so was a horrible shock when a fracture was found due to mbc

I’m trying different combinations of painkillers..been prescribed morphine capsules but I don’t want to succumb to those..I use paracetamol with ibuprofen or co-codamol on it’s own..relief varies from day to day

Keep well

B x

[youngfarm in reply to Crazydentist]

Any thoughts about taking Lyrica for nerve pain? Have only tried gabapenten which was not effective.

[Crazydentist in reply to youngfarm]

I take amitriptyline at night..helps me sleep and apparently helps with nerve pain..I take my usual pain relief during the day

You shouldn’t have to tolerate pain so go and see your specialist..you must have a good quality of life..pain can really drag you down as I know too well

B x

[youngfarm in reply to Crazydentist]

U think this better choice than Lyrica. And lowest dosage working for you? Side effects not an issue? Thanks for suggesting. Will see oncologist in two days to ask for script.

[Crazydentist in reply to youngfarm]

Hi

Both of these medications are first line treatments for neuropathic pain

I take the tiniest dose of amitriptyline which is 10 mg and have no I’ll effects

However I’m not a doctor and we’re all different..worth a question though when you see your doc

B x

[SeattleMom]

Hi, youngfarm!

First of all, hooray to you for warding off a progression for so many years! Out of curiosity hat have been your med protocols since MBC diagnosis?

The best of luck and prayers to you with your new regimen! May you have AT LEAST 13 more years with such positive results!!

Linda in Seattle

[youngfarm in reply to SeattleMom]

Linda, no history of any cancer in family. Male breast cancer patient was only 2nd for my oncologist. All treatments subsequently failed. Metastatic evidence apparent within 6 months of initial surgery. Was in lung, now dormant for 10 yrs. Very small 1.3cm, doing nothing. Vertebrae are getting hammered. New invasions every MRI. Compliments to physicians and researchers for their perseverance. Still tempted to consume more tequila and render myself oblivious to reality.

[SeattleMom in reply to youngfarm]

Did you know when it first spread to spine? That is where my mets are located, too. Linda

[youngfarm in reply to SeattleMom]

The first indication that my vertebrae were being attacked was in July 2015. Significant pain in L1 . The nerve was being squeezed due to cancer invasion and causing the bone to collapse and to become misshapen. Surgeon at orthopedic practice cut into vertebrae to allow more space for nerve which enabled me to walk without pain. He was a young guy and consulted with other surgeons in his group before making the incision. This correction to the spine still continues to give relief. Recovery was relative fast with no rehab involved.

[Crazydentist in reply to youngfarm]

Hi

Was this a kyphoplasty procedure?..I was tempted to have this done but the small risk of paralysis scared me off..wish I had now..might reinvestigate as fed up with pain from fracture

B x

[youngfarm in reply to Crazydentist]

I believe the surgeon did inject a small quantity of composite in my vertebrae to add stability.

[1998withStage4]

I’ve been living with bone only MBC since 1998. I hear you when you speak of pain! Fortunately doctors are doing much more to alleviate pain than they used to. Hope you can control it soon.

[youngfarm in reply to 1998withStage4]

Is Lyrica an option u have tried? Think I may consider a greater consumption of tequila rendering myself immune from reality.

[SeattleMom]

Are you taking any form of medication for the mets; i.e. Ibrance? Letrozole? Xgeva? Linda

[youngfarm in reply to SeattleMom]

Linda, I began injections of Xgeva along with fulvesterant, (FASLODEX) in November 2017. Also was taking Ibrance, 21day on and 7day off cycle. Tumor markers continued to climb with each monthly blood test. Oncologist discontinued Ibrance last month. My last MRI on Aug 2nd, showed much more invasive cancer cells in several thoracic and lumbar vertebrae......the medical write up referred to this as hypermetabolism.....and I really wondered why they used that term instead of saying "cancer invasion". I've become more irritable with really insignificant matters.

[Juliandrea in reply to youngfarm]

Hi Young farm, sorry to hear you are in so much pain. We are here and sending you healing energy!!!! You were diagnosed in 2005. What type of cancer and did you have any treatments since 2005 ?

[youngfarm in reply to Juliandrea]

Male breast cancer diagnosis 2005

Followed by surgery, and a complete variety of chemicals, radiation, hormonal offerings, Ibrance, faslonex, etc. Metastatic within 2 months of discovery. Real adventures in oncology for last 13 yrs.

[Juliandrea in reply to youngfarm]

I can imagine what you have gone through. For us newbies you are someone we can look to for guidance and hope. Thank you for sharing your story. What type of hormone therapy were you on? And have you changed your treatment every two years or so? Sorry for all the questions but you really are a blessing and an inspiration to us all. As are so many others here. Stay strong.

[youngfarm in reply to Juliandrea]

See, there's no specifically designed protocol for male breast cancer patients, so I've been following what worked for women. Supress estrogen production with any available meds, strengthening bones with Xgeva injections, Xeloda, Aromisin, fulvesterant, tamoxifen, taxitere, exemestane and others. Doc checked tumor markers every 28 days to see effect of meds. Ibrance discontinued not effective for me. Then restarted Ibrance with a combination of Lupron injections. Your specific body chemistry will likely influence your treatment received. At least that's the way I interpret matters. Oncologist who I see, is not confident that your diet has any significant difference on cancer outcome. To be determined, I guess.

[Juliandrea in reply to youngfarm]

Yes treatment is different for everyone it seems and my oncologist tells me eat what you want , continue doing what your doing. Well clearly that didn’t work for me otherwise I would be here, so I did tweak it a bit. How about you, did you change or add anything to your diet that you think might be helping. You and your oncologist are doing something right. Were you taking anything for bones from the beginning of treatment or not?

[youngfarm in reply to Juliandrea]

Bone metastasis began @ July 2015. First metastasis was lung, which is tiny and dormant for 10 yrs. Try turmeric for joint pain. I just began pomegranate juice to help reduce estrogen. This along with onions, red grapes, olive oil. May want to check with your doc about using cannabis oil or hemp oil. IDK about that.

[SeattleMom]

Did you ever have radiation to spine? I had ten rounds to my spine prior to starting med regimen. I’m so sorry you’re going through all the pain and stress. Wonder why doc hasn’t switched you over to Verzenio (sp). Seems that is often next drug of choice when Ibrance stops working. We are all in this same rocky, unpredictable boat. My prayers are with you! 🙏🏻 Linda

[youngfarm]

Yes, on radiation to spine. Cyberknife procedure, with 163 pulses into vertebrae on 3 successive weeks in 2015. Radiologist said not successful. Oncologist suggested Afinitor as next approach combination w exemestane.

Also lupron injection included. On the way to doc @ 10 Eastern today.

[SeattleMom]

God bless you! Hope you had a good visit with doc and that new med protocol zaps those spinal mets!! Linda

[RLN-overcomer]

Greetings: Brother Warrior I am so sorry you are in pain. You are in the rare 1% category with Montel Williams, and Richard Roundtree who were also diagnosed with breast/peck cancer years ago. I pray God will give you the answer to relieve your pain, and heal your body. There are some natural anti-inflammatory supplements, but you will have to make sure you consult with an ( Integrative Doctor) before using even these natural supplements. Eg Curcumin, Quercetin/ Bromelaine, Tart cherry extract, celery seed extract. I take two (2) Quercetin/Bromelaine combo pills daily along with two ( 2) Triple advanced Glucosamine capsules to keep the pain away from my joints, after aggressive chemo in 2007 almost removed all of the cartilage from my knees. I now run do high impact trainng Eg. hundres of jumping jacks in my interval exercise routine with no pain. You can also look at a supplement called Strontium, which is a natural bone strengthener, and builder. Try to read a book titled " Bloodtype diet/Bodytype diet," by Joseph Christiano. It works for me, and my loved ones who sincerely want to be healthier. You have to know your blood type. God bless you brother /Warrior.