Mets in spine

[Rego-park]

Pleae help

[BluHydrangea]

Such a shock! I hope you are working with a great Dr and that the course of treatment will be successful! Hugs to you!❤️

[Rego-park in reply to BluHydrangea]

Thank you was wondering if any of our warriors have any suggestion she’s in Cornell nyc

[Ursula_I in reply to Rego-park]

Hi, I have numerous mets in spine, some compressions and one fracture (T5). They have not got worse since diagnosis (whole spine MRI Oct 2021). They have been kept under control by the chemo (docetaxol) and drugs (pertuzumab, trastuzumab) and by the bone-strengthening Zometa (I was having infusions every three weeks, now every three months). And the pain is completely controlled by morphine (15mg twice a day) plus naproxen and paracetamol.

Best wishes to your sister. I was in hospital in absolute agony for over a week in October but I am much better now. (...Except for brain mets, of course...).

Courage!

Lucy xx

[Bettybuckets in reply to Ursula_I]

So hard but you write very matter of factly. That week in hospital must have been agony and so scary! My Mets in spine have been not too bad yet… but always waiting for the other shoe to drop.

[Ursula_I in reply to Bettybuckets]

Thank you. I am distanced from it... protection mechanism, I guess. All best wishes to you - I hope things continue well for you xx

[queeneee]

Hello, I have had mets in my spine since diagnosis two years ago, still jogging, cycling and dog walking.. nil desperandum.

[Contrarielle]

Hi yes me too, for at least 6 years! And no problems yet, I'm still pretty active. If they ever get sore they can be treated with radiotherapy but in the meantime hopefully your systemic therapy will keep you healthy 😊

[Fifi313]

I was diagnosed with MBC in bones from neck all the way down to my knees in July 2018. Was on Ibrance, highest strength from 8/18-3/22. Ibrance stopped working and was on Verzenio til 5/4/22-not working. Markers are sky high. Started Xeloda this week and continuing the Letrozole, Faslodex and Xgeva. Last CT scan up a very small spot on my liver. Bloodwork to be down next week to check if markers are going down. Praying they do! I too suffer from extreme fatigue and insomnia and pain. The meds for pain (non narcotic) don’t really work-I’m up every 2 hours ALL night then up for good by 2-3 am! I did have a second opinion, and was told my MD is on the right track with the treatment. I guess we just have to take it one day at a time but the not only can the treatments be debilitating, the mental agony is too. I, like you, am not in a good way at this time but we must push through.

[mspti8383 in reply to Fifi313]

Fifi313,I’m so sorry that you’re having such a difficult time. My heart breaks every time I read that that one of us MBC ladies is in pain.

You are right about taking it one day at a time. Try to keep in mind that there’s a constant evolution in drug therapy and there’s always hope.

I’ve read many stories of how some ladies with MBC have continued to live a long time after their diagnosis.

Sending you hugs and my best.

[Fifi313 in reply to mspti8383]

Thank you for the kind response. I have signed up for a trial or two but whatever they were looking for in blood for these trials was not there. I'm more afraid of my future now than I was before. I was told the average life span is 5 years and I’m closer to that now. I can honestly say that I took advantage of the fact that Ibrance did so well for me for so long & I was able to function so much more, I wasn’t thinking about the day it would stop working.

[DeedaSalmon in reply to Fifi313]

I was diagnosed with MBC in 2014. Large tumour at T8/T9. Had radiation on that spot which eased the pain. Subsequently scans have indicated that I have multiple mets in my spine, pelvis, ribs and scapula. Currently I am seeing rising CA153 but have no pain and recent scans indicate stability. I have had 8 years of "normal" life since the discovery of mets and even though there may be something happening based on the tumour markers I am confident we will find it and deal with it. Do not take those statistics too literally.

[Bettybuckets in reply to Fifi313]

Pain center might help. Prob time to get some narcotic and get some sleep?

[Ursula_I in reply to Bettybuckets]

Yes, I am very glad of the morphine (long-acting pills).

[Bettybuckets in reply to Ursula_I]

Ursula- I am sometimes thinking I need it soon. Fearful of theconstipation that might come with it. How do you manage?

[Ursula_I in reply to Bettybuckets]

Haha! Trial and error. Currently I am on docusate sodium 100mg capsules (2 morning, 3 at night), senna 7.5mg tablets (2 at night) and a sachet of Movicol (macrogol) every day or two. Seems to work. Plus as much water as I can.

[Bettybuckets in reply to Ursula_I]

Have you tried Miralax with water which dissolved clear and has no taste. Not a drug.

[Tazi127 in reply to Bettybuckets]

Diagnosed with Mets to spine hips scapula some on skull. My ibrance, exemstane,xgeva, seems to be working. Had pain in ribs that was irradiated and truly helped with pain. Now have new spot on Iliac crest and more. Dr is changing me to fulvestrant and will see radiation oncologist for treatment. I wear fentanyl patch 37 mcg. (One 25 and one 12 at same time). This alleviates going through the digestive tract and the issues it presents . No constipation and no yucky stomach. I have Norco 7,/325 for breakthrough. This had been working from time I was diagnosed. I live a productive mostly pain free life. My very best wishes. Please be assertive in your pain management. Dr's sometimes tend to be too cautious....if anyone deserves pain meds it's patients with bone Mets! ( not saying no one else doesn't need it as well)

[Hidden in reply to Fifi313]

Fifi313, I am so sorry that you are living in so much pain plus not being able to sleep. I have to ask why you are in so much pain. Is it because you don’t want to take anything that is a narcotic? Trust me, let your Onocologist prescribe something that does have a narcotic. Oxycodone might be able to help. I could not handle the pain and my Onocologist and the Nurse Practitioner has told me time and time again that their job is to NOT let me live in pain. I did not want to take any narcotics because I was so afraid I would get addicted. That is not the case. If you follow the doctor’s instructions, you will not get addicted. If you abuse the doctor’s instructions, you have a big chance of becoming addicted to it. Just take it per his guidelines and you will be safe and will able to live without pain.

Now sleep. I was on Ambien for a short time. I started having these crazy spells where I would not know or remember what I was doing. The last experience I had with that it scared my husband so bad and I was determined to find out what was going on. I started researching my meds and found out that Ambien had that side effect. I talked with the NP and told her I was weaning myself off of it. I did and I bought over the counter melatonin and have slept so well since. Sometimes I might have some worrisome thing on my mind and not get a good restful sleep but I would have to say that is very low. I try to give everything over to God and let Him take care of that for me and, my goodness, what a wonderful job He does. Psalms 91 has so much meaning to me because when I read it after being diagnosed it was just like God was reading it to me. Then I read 2 Samuel 22:2-8 and it was the same way. I love reading God’s Words. That is what keeps me going. You are in my thoughts and prayers and I hope this gives you a few words of encouragement. 🥰

[8576]

Hi: Sorry I don't have mets to the spine but don't rely on the numbers. You could outlive all of us! Anyhow, hang in there and good luck with whatever treatment they give you. You did the right thing by seeking a second opinion. Also, keep an eye one the Mayo clinic and the national centre, to see what is new.

Cheers, June S.

[PJBinMI]

I've had "extensive" bone mets, many in lumbar and thoracic spine since I was first diagnosed with breast cancer 18 years ago (3/1/2004). I had preexisting spinal stenosis and have had two back surgeries since then, both by neurosurgeons. The surgeries were due to the stenosis not the bone mets--how crazy is that! The mets have been stable for most of thed last 18 years. And I've only had to change cancer treatment twice. One thing to know is that bone mets are generally not considered "terminal" and many of us do well for years and years. I have had some lower back pain and it's never been clear to my doctors or me whether it is from stenosis or bone mets. But an Rx pain med taken twice a day keeps it under control. (I had worse lower back pain way before cancer) It might help us give you more specific information if you told us more .....

[Rego-park in reply to PJBinMI]

Thank u but she has in her spine

[PJBinMI in reply to Rego-park]

When you say spine, do you mean in the bones (vertebrae), spinal cord or spinal fluid? One of the things about cancer is that there are alot of differences that matter, in terms of treatment and prognosis. Even within breast cancer, there are alot of differences. Most of us with bone mets are given bone strengthening meds, either injections of xgeva or IV Zometa. These help reduce the risk of fractures. But the cancer treatment depends on factors in the cancer cells themselves--hormone receptors, her2neu receptors and some less common factors. And even for those of us with very similar cancer cells, there are differences. Getting the diagnosis is often really overwhelming. Having support from family and friends means alot!

[WhippetX2 in reply to PJBinMI]

I think I'm going to print and frame your response. Thank you!

[PJBinMI in reply to WhippetX2]

thanks! You must be a dog person! lol Only Whippet I've ever known was a neighbors dog when I was about 15. She was a great dog and every one in the neighborhood thought so. I've only had muttish dogs that are rescues of one kind or another. Our current dog is a huge chihuahua (about 14 pounds) from the local pound. She loves to sit on my lap in the evening and has very mixed feelings about sharing the space with one of our cats. Pets sure help me feel normal!

[mariootsi]

Sending hugs and prayers that your treatment works!