Who else has mets to their spine?

cive

Spine mets with degenerative disc disease here also (means the cushions between your spine bones are degenerating), which is an old lady/man disease if you want to call it that. Yoga is good or any activity that involves stretching.

PinkyTR

My hip pain and burning. At one point. Lying down and walking none. Seated, lying down and going on when stretched. I do not get up in the morning stroll to start. Bitter transmitter but not annoying and constant. terrible car use. I'm going crazy. Did you whether Herceptin bone metastases. How was your hip pain. IGHHH ..

PinkyTR

My hip pain and burning. At one point. Lying down and walking none. Seated, lying down and going on when stretched. I do not get up in the morning stroll to start. Bitter transmitter but not annoying and constant. terrible car use. I'm going crazy. Did you whether Herceptin bone metastases. How was your hip pain. IGHHH ..

Holeinone

Has anyone had surgery for a compression fracture? My MO has made a appt. For mid July to see a spine surgeon. They would fill in the squished part with some kind of material. I end chemo ( for now ) the end of June. :-).

Hello to all, thanks

pajim

Hi Holeinone, there are two ways to address a compression fracture. The first is to put cement in to stabilize the spine. That's called kyphoplasty or vertebroplasty. As I understand it, it's almost an outpatient procedure.

And it's a good on if you're not having nerve pain of any sort. Sounds like what they are suggesting for you. It's supposed to be pretty easy.

The other method is an orthopedic surgery -- spinal fusion. I have had that. One day in OR, four days in the hospital and six months of "no lifting, no bending, no twisting". I had the fusion because (a) was having leg pain, (b) my onc encouraged me to think long term, and (c) my fracture was quite something. A total crash and burn.

Holeinone

pajim, thanks for the information. My back seems to be getting worse, but I had chemo & Zometa on Wednesday, which has to be part of my discomfort. Hoping the easy way will be enough. I fear 6 months is cutting into my time. I also have liver mets.

I appreciate your response......

Anonymous

Another one here who was dx'd Stage IV with bone mets from the get-go. I had rads to my lumbar spine, sacrum and hips soon after dx as I was in an incredible amount of pain and unable to walk. It made a tremendous difference in both my pain and mobility. My bone mets are extensive. I've been back for rads 3 more times; my hips were re-treated and my right scapula was zapped. One hip has been non-compliant, otherwise the results were good. I also get Zometa and take calcium and D3 supplements. I started off on Tamoxifen and am on Femara now. This past February marked my 3rd year "anniversary". So far I am considered stable.

Fitztwins ~ How often do you get scans? I get CTs and a Nuclear Bone Scan every 4 months or so to keep tabs on everything. Maybe the docs don't want to do anything because your nerves and spinal canal aren't in danger of being squished and the vertebra is stable? They owe it to you to give some better answers. Worrying and waiting suck.

Holeinone ~ I've never had chemo but the Zometa always leaves me feeling like I've been hit by a bus. I can't imagine doing chemo and Zometa at the same time.....hoping your "after" pain fades away soon. I had an L2 kyphoplasty last year to fix a fracture. Cement is injected to stabilize the spine. Very easy procedure done as an outpatient surgery. I went home that day and was on bedrest for two days. My spine is pretty much swiss cheese so this was my best and only option. I did have pain and nerve compression. Using the restroom was difficult to say the least. Hard to "go" when you can't feel the needed muscles. I am a modest person but did proudly announce " I can go poop and pee!" to anyone who asked how the procedure went. I am waiting to be scheduled to go back for 2 more kyphoplastys. This time the surgeon will use radiofrequency ablation to burn out the cancer before injecting the cement. Stabilization is the primary goal. Pain relief and unsquished nerves will be a bonus.

This short video very nicely explains the kyphoplasty procedure: https://youtu.be/_lUhQLFHriw

Aoibheann

I also was dx with bone mets from the get go. Mets are everywhere - skull, spine, ribs, pelvis, hips, arms. I have a pin in my right humerus because the bone is eroded. Ribs were fractured after this operation. I have had three bouts of radiation to my spine, firstly to my t4. It was the debilitating pain from this that led to my dx and the onc feared paralysis from the tumor pressing on my spinal cord. I had two further bouts of radiation to my lumbar and my cervical spine. I have two compression fractures which my onc won't treat as he says the rest of my spine is too weak to sustain any work. A couple of my vertrebrae are severely eroded and are crumbling. I tripped and fractured my nose and my pelvis. I have a lot of pain and to add insult to injury, I have lymphoedema in my right arm and side. I did have three nerve block procedures to my spine but I rely mainly on pain meds - lyrica, oxynorm and a fentanyl patch. I have a zometa infusion every three months. I still have pain and a lot of discomfort.

Since my cervical spine was radiated I sometimes find it uncomfortable to hold my head up. It feels too heavy and as if I have a tight sheath of muscle compressing it. I have lost about 4 inches in height and have a 'dowager's hump'. To add to the joys I lost my hair on chemo and it has grown back thin and a dirty white. Friends I haven't seen for a while don't recognise the new me. It's ridiculous to be so vain when I'm lucky to still be here but I especially hate my dss remembering me as this little old lady..

Re scans I have a ct every three months and a nuclear bone scan every six months. I don't take any supplements as onc against most complementary treatment. Presently am stable on faslodex and femara, fingers crossed...

Ax

p.s. Apologies for being such a debbie downer.

Lillymillie

Aoibheann I'm sorry you are in so much pain. I'm probably the only one who can pronounce your lovely name as I'm originally Irish. I'm glad you are stable but you sound like you have really been through the mill. Has your on mentioned anything about Ibrance? It's not available in UK yet but think it would be very promising. I was wondering what's happening with it in Ireland?

Aoibheann

Hi Lillymillie, I contacted Pfizer (Irl) who told me that ibrance won't be licenced in Europe until the end of 2016. They said that

'there is a programme available for patients to access this drug, subject to certain eligibility criteria being met.

If you could ask your Consultant Medical Oncologist to reach out to me then I can discuss the process with him/her. The request and paperwork will need to be submitted by them.'

My onc said it had to be first line treatment to meet the criteria so I didn't qualify.

Lillymillie

Hey Aoibheann,

My onc has been on the case. He tells me that it will hopefully be licensed latter part of this year but will most likely only be available to people with private health care first before the NHS make it available nationwide. I thankfully have insurance. I was just wondering if it differs in Ireland as I'm not sure how the system works where you are. I might move back if it becomes available sooner!!!

JCNC

My back had been hurting more and more ever since I started chemo - about 6 weeks ago. Haven't had much at allbefore my diagnosis. Doing weekly taxol + H & P every 3 weeks. The mets are to my liver, bones , and spine. Really the past 3 weeks is when I have been feeling some more back pain. Can this be from the chemo at all or is this more likely a result of the spine mets ?

Bluefrog76

Holeinone: I had two kyphoplasties last summer. I was completely debilitated my the compression fractures which had gone misdiagnosed (undiagnosed) for months. The surgery was quick and I felt better immediately. I haven't had pain in that area since. Happy to share more offline.

JC: it's so hard to know when there is so much that can be attributed to treatment side effects. I've definitely heard of people having pain from "tumor flares" which is actually the tumor healing. Are you also on Xgeva? I definitely feel bone pain after those injections.

KDs-Husband

Ok, if you don't mind, I want to pop in here on my wife, KD's behalf. She was diagnosed in mid Feb. with MBC, with mets to Liver, Ribs, Spine, Pelvic Crest, Right Femur and a couple of small spots on one lung.

For the most part, all attention has been directed at her Liver which had two large tumors and multiple other lesions. Also, it was enlarged to about twice it's normal size. She has responded very well to chemo thus far.

Well, about a month ago, KD started complaining of a new pain in her upper back. That turned out to be a compression fracture (CF) in her T-2 vertebrae. A recent CT scan revealed that she has mets on 10 of 12 thoracic vertebrae and on her L-1. (We only thought there were 4 spots on her spine). Our Neurosurgeon won't touch her until they radiate and get rid of the cancer in the area of the CF. Kyphoplasty is not an option unfortunately. :-(

She is being scheduled for a scan of her full spine (I'm hoping they scan from top of her head to tip of her toes). We meet with the RO in about an hour.

So, after all of that, my questions are:

1. Has anybody done radiation at the same time as weekly Taxol??

2. Has anybody had radiation to multiple vertebrae (10+) at the same time??

Just when we thought we were getting the hang of living with mets, BOOM, this pops up. But, y'all know all about that.

Thanks, KD's Husband

Anonymous

Hi KD's Husband,

I can't answer about Taxol and rads as I've not had to do chemo. I have had multiple areas "zapped" at the same time. My first radiation treatments were for most of my T-Spine, all of the L-Spine, and all of the pelvic bone including both hips. The treatments do cause fatigue. Rads can cause nausea, especially when near the stomach, intestines and colon. Taking Zofran or Ativan before going in for treatment is advised.

There are some "sensitive" areas that can be affected by rads when treated in the lower regions of the body. Ask the RO about avoiding the bowels, bladder and "lady parts" if at all possible. Be sure to stock up on moisturizer to keep the skin of the treated areas nice n' hydrated.

I was DX'd about 3 1/2 years ago with bone mets from the get go. Tamoxifen and now Femara along with Zometa infusions have kept me stable. I get Nuclear Bone Scans from head to toe every four months to make sure nothing changes. I also get CT scans done every four months.

The T2 fracture must be miserable. Hopefully something else can be done?

Wishing KD continued success with her chemo and lots of relief from radiation therapy.

Check back in with us and let us know how things work out.

Healing thoughts of comfort and strength to both of you!

KDs-Husband

Thanks Shepkitty,

We met with the RO this afternoon. He ordered radiation for her C-7 thru T-4 vertebrae. She got her initial "zapping" right then and there.

Before she left the exam room for treatment, our RO asked everyone to stand and hold hands. Without prompting, he commenced praying for both of us and the treatment that KD was about to receive. What a powerful moment that was!!!

It turns out that KD has mets up and down her entire spine (instead of the four spots that we thought she had). The RO assured us that they had all been there the whole time though. He said that right now, they are just going to concern themselves with the compression fracture and the immediately adjacent vertebrae. Gotta get that stabilized.

Tonight, we will sleep much better than we did last night. :-)

And the roller coaster ride continues....

Anonymous

KD & Husband,

How wonderful to have such a caring RO! How many days of treatment will KD have? Rads are different for everyone; some get relief almost immediately, others take a little longer. Fingers crossed for immediate relief. Check out the threads for those undergoing radiation treatment - I think we have a discussion group for just about everything! WenchLori started a topic ER+ with no ovaries??? that became an excellent resource for nutritional supplents when eating is difficult.

Even if KD did well yesterday, I would still highly recommend Zofran for a nausea preventative. Better safe than pukey. Stock up on plenty of liquids - hydration is so very important for the body inside and out.

May your roller coaster ride be on the one in the kiddie park

Blessings to you both ✝

p.s.

If you could fill in KD's DX info in her/your profile it would help the others here to be able to better advise you.

TarheelMichelle

Because others with spine mets may be reading, I want to share my treatment experience. I have lots of bone mets, controlled with 24/7 pain medicine. In late 2014, my lower back pain (spine) was more intense. I didn't know then, I was simply developing a tolerance to morphine. My Sloan-Kettering team looked at my spine scans and decided radiation to my lower spine could help (in the sacrum area, I'm not good with those L and T numbers!). I went for a consult with a RO in my city (I live in NC.) She thought I should have an area in my upper spine radiated at the same time, too, between my shoulder blades.

I didn't think twice about radiation itself. I had my left breast radiated during my initial treatment. No major side effects and the radiation appeared to give me extra protection. When the cancer metastasized, none was found near the radiated area.

I asked my RO if it was necessary to radiate my upper spine, because I wasn't feeling pain there. She said the tumors were actually larger there and if I didn't feel pain now, it was coming. Her mistake was assuming my cancer was only going to get worse. I've had regression and progression, I realize now that I should have said no to the upper radiation, for several reasons. I asked her if radiation would affect my ability to run and she said no. Radiation isn't pinpoint precise. The "scatter" caused permanent damage to my lungs and windpipe. An oncology pulmonologist confirmed this two weeks ago. I won't even go into the gory temporary damage of radiation (which lasted a year, not the "two weeks" I was told).

Most cancer patients are treated at one hospital, at least sequentially. I have a view of treatment differences between small-city hospitals like the ones in my hometown and dedicated, world-class cancer hospitals such as Sloan-Kettering. My view is that Stage IV patients need the expertise of top-tier cancer centers when treatment decisions are made. Most oncologists in small cities do not have experience treating longer-living Stage IV metsters. My local oncologist doesn't have a single patient on Afinitor. Not one. The ROs I have seen at local hospitals use radiation as palliative, end-of-life treatment and give little thought to radiation damage to people who may live decades more. I will probably never be able to run again, my shortness of breath can't be treated. I had just discovered the joys of running before I was diagnosed. It hurts. I wish I had not been so fatigued when I made decisions to have both spine areas radiated. I chose to have the radiation done at a local hospital and not travel to Sloan-Kettering. Local hospitals have let me down several times. I was also told (in error) that I had cancer in my liver and needed to start chemo right away. If you are reading this and have cancer in your spine, I urge you to seek out the most experienced oncologists you can find before making a treatment decision. People I meet get touchy when I suggest they deserve another treatment opinion besides the one from their small-town oncologist. "But he's the nicest man I've ever met," they say, in defense. My Sloan-Kettering oncologist is nice, too. But she's also connected to cutting-edge cancer treatment, treatment that has prolonged my life, unlike the treatment at a local hospital that has damaged my life.

Blessings to all

Valz

I recently experienced a small spot of mets to one of my vertebra. I was told it was too small to affect the strength of the bone. But I am getting monthly Zometa shots. How about you?

ABeautifulSunset

Michele, I'm sorry about your radiation story. We learn a lot as we go. Unfortunately once damage has been done, it can't be reversed. I have seen the negative effects of radiationon myself. I do believe in it, but only when absolutely necessary and when the benefit outweighs the risks. I also believe, in any case where possible, a major research medical center is more likely to get it right the your average nice small town ONC.

Valz, nothing to do to a small bone met but keep an eye on it. May it never change (unless it's to go away, of course). I believe Zometa is a good drug for bone mets. I am on Xgeva for mine. I think they are Similar.

Stefanie

Valz

Stefajoy, I wondered what Xgeva was as I noticed it on other posts. I have never heard of it. Thanks. May my bones remain strong! MMBRS

KDs-Husband

Thanks Shepkitty,

KD will have 10 radiation treatments. RO said to expect throat irritation around day 7 or 8. She's doing shots of Aloe Vera Liquid to help with that.

We have no idea how quickly the radiation will affect the mets on her 5 vertebrae being zapped. Hopefully, it will be quick.

It is amazing to consider that I am hoping that a Neurosurgeon can perform Fusion surgery on my wife's spine all the while we are treating her for MBC. This is just a strange new world that we exist in.

Michele, thanks for sharing, I THINK!! LOL. Now you have given me more to think about. We did inquire about radiating more than 5 vertebrae, but RO said that doing more would damage bone marrow, and that KD needs all the healthy bone marrow she can get right now.

Anonymous

KD & Husband,

Just a quick note about the aloe. Please double check with your MO before taking it. Aloe vera leaves contain phytoestrogens, compounds that mimic the effects of estrogen in the body. Not good for ER+ cancer.

No matter what type of radiation machine is used, there will be some amount of scatter. The RO will look at CTs of the area to be treated and carefully plan out exactly where the rads will be directed. My first round of treatments left me with burns that took a very long time to heal. It was not expected that there would be scatter to the areas that were burned. I was to have had ten sessions, but had to stop at 7. I have had rads 3 more times since then. Knowing my sensitivities, my RO was able to make adjustments in the strength and duration of those treatments, saving me from getting damaged again.

If at any time KD feels discomfort or has any type of concern during treatment, please tell the RO right away. Treatment can be adjusted, meds prescribed and solutions given. I wish I had spoken up sooner that first time! The doctors do not want to scare us by telling us about the potentially unpleasant things that may occur during treatment. Big mistake. Not everyone has negative experiences. We do need to know what to expect ; the good and the bad. We're already fighting cancer - we ain't sissies!

TarheelMichelle ~ Thank you for sharing your experience. It is important to know the scary stuff. I was so very angry my first go round with rads. My original RO had warned me of some of the SEs, but not all. Had I known everything to look out for I could have possibly saved myself from the damage becoming so bad. Plus, I was never offered Zofran until I had become so sick that I was unable to keep anything down. The RO who took over when the first one transferred to a different center is outstanding. Very compassionate and very involved in every part of the treatments.

The first MO I saw after DX was at a small local cancer center. My dear RN friend and my husband where with me. The minute the guy left the exam room, we looked at each other, shook our heads and hightailed it outta there. My husband called Hollings Cancer Center as we were walking out! The local "cancer center" had given me a very grim prognosis as I was Stage IV De Novo with extensive bone mets and a decimated spine. I'm sure they would have killed me within a year or less! 3 1/2 years later and Hollings has kept me stable. It's a very long drive and very well worth it. I thank God every day for my awesome team.

You are in NC - why did you choose Sloan over Duke? Hollings is part of the Medical University of Charleston. I love all my docs and techs there. Both Hollings and Duke are NCI Centers and leaders in research. Sloan too. We are so fortunate to have such excellent choices.

How is your pain managed now that the morphine no longer works for you? I have never gotten relief from opiates/narcotics. I've tried every variety but I only get super nauseous and stay in miserable pain. I take Tramadol, Fioricet and motrin........which is better than taking nothing. Ugh.

Valz & Stefajoy ~ Hooray for Zometa and Xgeva ! They both strengthen bone and slow/stop the mets from spreading.

Sending hope for healing, comfort and longevity to all

Sattipearl

hi everyone,

Wow, lots to share here.

I have osteolytic mets to my entire torso, femoral heads, skull and spine. I've look at my bone scans and my bones too look like Swiss cheese. OneBone scan remarked that my Cspine is "moth eaten". I asked my MO if that truly was a medical term. I sometimes wonder how I remain upright.

I was on taxol weekly for the first 9 months post dx. Three months in we interrupted the chemo to do radiation for 2 weeks to relieve the pain in my thoracic (T) spine, and three of the 13 ribs that had spontaneously fractured. Also had compression fractures to the spine and have lost 4" of height, from 6'1" to 5'9". I had radiation to both hips in the last year; one with a hairline fracture and avulsion of bone fragment and the other for pain. I've been on 10mg oxy twice a day for over a year with consistent pain relief. I was taking 100mg twice a day in the first 6 months and was able to wean down to current dosing.

I was on Zometa monthly for over 3 years and recently switched to Xgeva monthly. I have deep, intense short lived thigh bone pain intermittently the day after injection.

Recently diagnosed with liver mets and lymphangitic carcinomatosis to my left upper lung. Now getting Gemzar Carbo 2 weeks on, 1 week off. Had 1 round and the cancer showed progression on the X-ray. Will go for 2 more to see if we can tamp down the cancer. Everything I've read about the lung mets says this type is fast moving and quickly lethal the majority of time. My MO asked me at our last appt if I have my advanced directives. This from a man who outright refused to discuss longevity up to that point.

I'm still working 7-8 hours a day doing inside sales for a software company and kicking ass...feel ok most of the time except for shortness of breath (SOB). Since I sit most of those hours, the SOB is manageable

I'm willing to have a miracle...

Thank you all for being here.

TarheelMichelle

sattipearl, I'm giving you a (virtual) standing ovation, a high five, and a parade of glitter and sparkly unicorns for being able to work full-time with your mets! Wow!

Shepkitty, Excellent advice you have given. I can relate to your story, especially about the positive vs negative attitudes of medical team. You asked why Sloan. I just happened to be living in NYC when diagnosed, and my GP just happened to have interned at Sloan, with breast cancer doctors. I had a hand-picked doctor who is superb. I thought that eventually I could transfer my care to NC, but too many bad experiences. I do have a very good local oncologist, at long last. I had to work my way through a few. I am so sorry about your pain. I've known others who don't respond to opiates. I build up a tolerance fairly quickly (6-12 months) so I switch between morphine, Fentanyl patches, OxyContin and methadone. Morphine easiest. Would like to try medical marijuana but it's not legal in my state. Hoping that will change. Not sure if it would help, I would need to vape it, my lungs can't handle smoke, but would like to try. Tramadol didn't help me at all. Isn't it puzzling how even our response to pain treatment is very unique.

My latest treatment (Femara) really makes my bones hurt, which doesn't seem fair to have cancer pain AND treatment pain.

It's so helpful to read what all of you have shared. It helps me immensely, to know I'm not the only one going through this. Thanks, and hugs/prayers/applause to all.

Sattipearl

TarheelMichelle:medical cannabis works for me. I use edibles, and found a mix of high CBD and very low THC enhances my pain meds. Hope NC passes laws soon so you can try it.

JCNC

Hi Tarheel - I'm also currently at Slaon in NYC. Who is / was your oncologist ? I've been on the weekly taxol for about 3 months, and have 3 more months to go before they re-evaluate. Also getting the herceptin & perjeta every 3 weeks and will continue in that forever.

Our Dx seems slightly different as I am Her2+, but how have your experience been at Sloan and with your oncologist / surgeon?

Iwrite

Sattipearl - Sounds like you are going through quite the "experience." Sending good thoughts and hope for effective treatments for the disease and for your pain management. Working full time while doing these treatments seems overwhelming. Hope you have some time for yourself to do those things you've always dreamed of...

Totally agree with others who feel strongly about using the best cancer treatment hospitals available. I drive 2.5 hours to Chicago to see my doctors and the local support group ladies confirm that the local care is more risky. At some point I'll need to align with a local doctor or move closer to my current team.

Letrozole and Ibrance caused a lot of bone pain the first few months, but that has eased up. Now in month 10 with this protocol. Sacral area is very painful with nerves talking to me all along the spine, left leg and left arm. I've been doing physical therapy, but no improvement. (Didn't expect any.) This may be another thing to get used to.

The best thing I've done is to start swimming every day. I'm on the last few days of Ibrance for the month and the exercise has helped so much with fatigue and fuzzy brain. It also helps me get out of chairs without groaning or limping around too much:-)

I know we are all managing as well as we can to have some good time with family and friends. It's great to hear good news from you all about scan results and successful treatments!

GracieM2007

Hi Fitz! I remember you from way back. My original dx was in 2007, I was on the site for a few years after that and then left because I was doing ok and life was getting busy. I've been free of cancer for nine and half years. Until now. I have two areas of mets on the spine, upper and lower (don't know the numbers because at this point I'm too afraid to read the reports), one on the femur, one on the hip and one on the chest wall. I have a biopsy in two weeks, and see the onc a week after that, to decide treatment plan. To say I'm blown away would be an inadequate statement. But nonetheless, here I am. I'm having some pain in my upper back and neck on left side. Whether it's really from the mets, or in my head, I have no idea, but it's there. I dont' know anything at this point really about what I am dealing with, but am hoping for the best. Am glad to see you online again. All of you ladies are inspirational.

TarheelMichelle

sattipearl, thanks for sympathy and advice about marijuana. A friend has made me edibles, but I don't think I could use them for regular pain control. The marijuana scent/flavor made me nauseous (lollipops). Even being around odor of pot smoke sickens me. I wasn't always that way. I believe Afinitor affected my senses of smell/taste. Maybe now that I've switched treatments I can try edibles again.

Kathryn, your report that exercise seemed to help your fuzzy brain motivated me to try and resume my exercise. I walked 4 miles today. Treatment has caused SOB so running is impossible at the moment. Honestly, I dare not tell my family how badly Femara has messed with my thinking. It seems to be more than just forgetting a name or number. I was playing chess with my son, and forgot what piece the knight was. Had been playing chess all day then suddenly -- Poof!

JCNC -- my MO at MSKCC is Tiffany Traina. She is a treasure. Her specialty is triple negative, which I'm not. She's told me from the outset that I don't need chemo and probably never will. This has made me very "anti-chemo" when I talk to women who are Stage 0 or 1 and are having chemo before BMX. It is so unnecessary in many cases. It drives me crazy to see women misled by doctors about treatment. Lots of women have gone through chemo hell and BMX, then have a recurrence and are shocked and mad. I would be, too. I have also seen a pulmonologist and dermatologist at Sloa. What a blessing to see someone who specializes only in skin-related side effects of cancer treatment. I live in a 2-hospital town, both with a cancer treatment center, and couldn't find a doctor experienced in removing skin mets.