Who else has mets to their spine?

Fitz, I'm sending prayers and well wishes {{{hugsa}}}

Hi, just about every vertebrae has a little bit of cancer in it. Two spots are worse then others and my onc said unless they are really bothering me they don't want to do anything to them. Sorry I'm not much help but just wanted you to know that my onc says the same as yours.

Yes, spinal mets here too. When I was first diagnosed I had two areas that were pretty bad. I had a lot of pain and I was limping (probably from the met to the sacrum). The biggest thing was I started to feel muscle weakness in one of my legs when I was walking down a hill or stairs. It felt like it was going to give out. They said it was just starting to get close to the spinal cord, but when I told them about the weakness they decided to do the radiation in the two areas that were the worst. They didn't want to wait see if the chemo would work first, but that meant that I couldn't have the chemo/H&P until the 15 rounds of radiation were complete.

I know we have a lifetime limit of radiation, so they may want to conserve that and use it only when necessary. Also, I think you would have to be off of other treatment while getting radiation, so that may not be ideal if you have mets to other areas. Is this spot getting worse? Do you have any discomfort?

I assume you are already on xgeva or a biophosphonate to help with bone density? I believe studies have shown that they also help inhibit bone mets.

All the best to you Fitz. I hope you know you are in inspiration to many of us here, me included!

Spinal mets here too.... precarious locations, right at the bottom of the spine where the risk of paralysis is the greatest. However, they only want to radiate if there is pain. Radiation actually does weaken the bones a bit, at least for the short term, so they don't want to use that tool if not necessary. I have, reluctantly, agreed to Xgeva to counteract and strengthen, and my current treatment of Xeloda seems to be working. Last scan showed a huge decrease in activity.

My tumor load is still relatively small with just the spinal and rib mets, plus those pesky pleural suckers that started this whole show.

Wait and see if the new mantra isn't it?

*susan*

I too can join the chorus with cancer in the bones, spine and skull. There is one spot in my back that gives me lots of grief if I sit for too long. If I can change my position and have periods to lay down then I can manage. Sometimes I will medicate with oxy before long periods in the car. The radiologist mentioned the area in my back during 3 zaps to each femur head and the left shoulder. I was experiencing aching in the joints and was afraid my hips would give out. I was afraid of being in a wheel chair or unable to move if my hips went. I decided to do the radiation for pain control and it worked. My blood counts have stayed up and my ability to walk has increased. I continue to lose weight but that has been ok since I was over weight and losing has been a benefit. I was also afraid to radiate that spot in my thoracic area for fear of damaging the nerves. A wait and see approach has been a benefit. The zaps to kill cancer in the femur heads and humerus were successful. The pain was reduced, I take Xgeva and extra calcium.

I hope your boys and husband are all well. May your summer be lovely. Good luck Fitz may you skate through without issue.

Hi Fitztwins, I have mets in several vertebrae. I have not had radiation and will not have it unless I need it for pain.

Lynne

Hi Fitztwins and all,

Yep, bone mets here de novo seven months ago...spine, sternum, ribs, hips, shoulders. Letrozole and Ibrance plus Xgeva has been the treatment and the last two scans have shown no uptake and mets healing. Total happiness with those results. Quite a few of the other ladies have had success for an extended period with bone mets!

In the past three weeks I've had lower back pain and shooting pain matching all the things the ladies here have said about sacrum mets pinching nerves. It improves as long as I do no exercise, no walking, yoga, weights, nada.

So...scans on June 13th, a month early, to see what is happening. No downward dog for now.

Dear Fitwins,

Right you are to be concerned about spinal mets. 23 months ago my medical oncologist was unconcerned and just wanted me to be happy with Arimidex. I flew to Shands Hospital Proton Center in Jacksonville, florida. The radiation oncologist thought I needed radiation stat. Of course it was Proton which is extremely accurate and does not "go through" to the other side. I had wonderful success. ! there is no malignancy in that area-T-7. The physician and his nurse both thought by now I would have been paralyzed if I had not taken that action. I wanted to know why the MD could not radiate all of the mets. Foolish me there are limits/ But now chemo of Taxol and traztumab has put me in remission..I am of course delighted. Bottom line: ask for another opinion. Carolyn from Nashville

I am another with spinal mets - numerous throughout my spine. I was in extreme pain and had severe, uncontrollable hypercalcemia when I was dx'd and had a hard time doing many simple movements I previously took for granted (walking up one mini step, getting up and down from sitting, getting out of bed or moving in bed, coughing/sneezing (which felt like my bottom vertebrae was going to snap), washing face/leaning over sink/getting face and hair ready in the morning). My doc has never suggested or recommended radiation. My bones did quite a bit of healing (my pain is minimal now) and I am currently stable although continue to have a large bone mets tumor load. XGeva has helped tremendously with the pain decrease.

I think the question of radiation is truly a case-by-case analysis and really depends on the risk of fracture determined from scans, pain level not responding to other treatments and the shape your bones were in (density) prior to current mets issue. Someone with pre-osteoperosis or weak bones to begin with may have a shorter leash before fracture or something serious occurs.

One good (and bad) thing about bone mets, in my experience, is that my body really tells me what I can and can't do. If I hold my baby/toddler for too many hours or try to do extensive work leaning over the sink preparing dinner/washing dishes, my usually pain free back will flare up for the day. Although I was clueless I had mets before dx (I was pregnant with first child and thought I was having an extremely tough pregnancy), I recall saying to myself on a daily basis "this is NOT RIGHT" when I would cough or do something else minor and be in dire pain. I knew something was wrong. Listening to one's body with bone mets can usually (although not always) clue us in when there is a significant concern.

You can add me to the list of people with unradiated spinal mets.  I have several spots on my spine as well as multiple other places (skull, ribs, femurs, pelvis, liver), but they don't cause me any pain.  Most of them have been stable on the various drugs I've been on although it was a new spinal met that signaled the end of my run on Faslodex.   None of them give me any trouble (it's been a little over 2 years) and the only radiation I've had at stage iv was to my hip (worked wonders in my case). 

All this to say, I agree that it's very case by case, but I think your onc is in line with most others on this one.

I was diagnosed Stage IV in the summer of 2011 and have been in chemo since that time(my cancer did not form a lump in the breast or show on a mammogram, but instead when beginning to grow "took off" and went to the uterus, ovaries, and all the bones of the torso). A hysterectomy took care of the cancer in the uterus - where it was found first - and the ovaries. The spine, ribs etc. were found in 2011 to be loaded with cancer and, thus, the chemo's only purpose is to keep the cancer, for as long as possible, from going to an organ. I've done very well these almost 5 straight years...I'll probably die from chemo side-effects rather than cancer, actually. I think you either have to trust the treatment of your oncologist or get another opinion and go from there. The very best of luck.

Anne, my ankles have been swollen off & on since I have been getting Taxotere.

I have had 4 out of 6 infusions. My thumb nails hurt & look like they have bled. Next infusion I plan on icing my nails. Has anyone tried that?

hi ladies, lots of info on this thread. I too have a spine met. My public bone and femur radiated at the start of May. While waiting for zoladex to make me menopausal (got my period so failed) a small spot showed up on sternum and spine (right when my bra strap closes...not sure what T that is.) Onc saw them on an mri and said they were too small to show up on a bone scan. Can feel the spine met tingling away especially today in work which freaked me out. If it's so small how come I can feel it?? Hoping my 2nd zoladex will kick in to allow my arimidex to work. Getting scanned at end of the month. Very unsettling feeling knowing I'm still not menopausal. ..damn I would love a lots of hot flashes!!! Good to read everyones input.

Have any of you ladies with severe back pain from mets on the spine been given steroids for the pain? Wondering if they work and how quickly.