Bone Mets Thread
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I just pray that all of us don't get too discouraged with this "hard work."
Last week was a tough week for me...I was almost ready to throw in the proverbial towel
Take care, ladies.
L
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Lita,
I would be very interested as to what makes a "hard" week for you. I have a feeling it would make me look like a weak lily in comparison. You are my revered role model.
If there is anything I can do to help, let me know.
Jennifer
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hi everyone!
Just coming to give some love!
Andrea - I got a new bed last week and I have to tell you, my arm and shoulder pain at night have gone from a 10 to a 1 on the pain scale!!!
I didn't realize it but I was sleeping on the worst mattress possible as well as my bed platform was broken (no idea until I took off my mattress!) I had been sleeping in a hole!!!
Just an idea to maybe check your bed and make sure it is a good one and if possible financially, to invest in a reallllllly good bed. I was gifted a temperpedic by a breast cancer support group calles United Breast Cancer Foundation our of Baltimore. They gave away over 300 temperpedic mattresses to those diagnosed with BC. I got so lucky!!!!! I was sleeping on a futon mattress for the past 8 years :-/ now I have a grown up bed! And it is the BEST!!!!
This is the link for anyone close to Baltimore in need: http://ubcf.org/events/2018-md-tempur-pedicr/
There is an application and I did have to get a letter from my MO, which is part of the application process. It was very easy
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LovefromPhilly,
That is awesome that you got a new bed from that support group. Gives the term “support” new meaning, huh? I also have been blessed to have a Temporpedic mattress, and I love it. It really conforms to your body....kind of hugs you at night. So glad to hear your arm and shoulder pain are better. Nothing worse than living in pain.
All the best to you,
Lauri
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Oh my. Had radiation to my lumbar spine down to my sacrum today. Generally I have tolerated radiation quite well but this time? Not so much. The Cancer Agency is only a short drive from my office but by the time I got there the nausea was overwhelming. Grabbed my things and sent a note to my boss to say that I had to go. Thankfully I had the presence of mind to also grab a couple of plastic bags. Made it as far as my car before losing my lunch. I’ve never done that before! Nausea improved with a gravol but I am very fatigued and my back is NOT happy. Apparently it will take a few days for the pain to subside.
I hope this does the trick. I’ve been struggling with back pain, sciatica and headaches but have been so unsure if radiation was the right thing to do. Back pain can be caused by so many things that it’s hard to be sure my extensive spinal mets were the real issue. Interestingly, to add to the recent discussion on scanning modalities, my RO indicated that my bone scan looks almost completely normal but my CT shows innumerable mets throughout my spine. She said you wouldn’t think it was the same patient. It’s likely due to my slow growing cancer but there was a hot spot in the lumbar region which is why we zapped today. Here’s hoping that we got whatever it was that was causing the pain!
Hugs to all. Pat.
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Morning All,
Sunset - No Worries I'm just mostly incredibly Angry that I apparently didn't kick cancer's ass hard enough in 2011 despite following the 'rules', I have felt super wonderful and health for the last 2 years and i'm trying to say as upbeat and positive as i can;
Yesterday's appts landed me in the CT getting aligned for 10 Rounds of Ext. Rads to the T & L Spine, Sacrum and PelvicBones with 1 round to a sinister spot in my RightHip to start Today!! MO wants to start this (12/10): Drug Regimen: Chemo/Targeted Therapy: Palbociclib (StreetName: Ibrance), Aromatase inhibitors (AIs): Letrozole (StreetName: Femara), OvarianSuppression: Leuprolide (StreetName: Lupron), Bisphosphonates(bone strengthener): Denosumab (StreetName: Xgeva)
I really hope that the woman I became on Tamoxifen doesn't return . . . She was really An Awful Person!
Sending ((hugs))and well wishes to new friends
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Wow... so many of us getting rads in about the same place. I’m going today for MRI and then it’s on to radiation. Not sure how many fractions I’ll get yet, but it will be to my pelvic bone - lower back and hip in right side - and possibly my lumbar.
Pat, is it normal to hurt and be so nauseated following rads to this area? How many treatments do you have to have?
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I know I posted my treatment somewhere in this thread so I apologize for repeat. I have 5 tumors along sacrumliliac joint and had terrible pain, nausea, lethargy, loss of appetite, muscle spams in my left leg. I had 10 rads to the area. No side effects to mention. I was so ill, I guess I didn't notice. Radiologist said about the 5th treatment I should have relief from pain. After the first shot I had total relief from pain and could lift my left leg. He couldn't believe it. I told him he hit the sweet spot. I hope you girls have good success with little SE. I've never feared radiation. I have cancer. What do I have to fear now except fear itself. Hugs! Jo0
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Sorry for repeat. Can't delete
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Hi Jo.
I had the same experience with my first shot to my lower back on the right side. I had suddenly experience terrible sciatica and the relief from radiation was almost instant. I had zero side effects with that treatment. The second treatment (again only one single treatment) was to the pelvic bones and hip joint. I had only a partial response from that treatment, still have pain in my hip (but not as bad) but the groin pain is gone. In terms of side effects, the biggest issue was vaginal irritation which was instant. I actually wondered if I would be able to make it to my car! Fortunately it eased but took a day or so to settle down completely.
SheilaMarie, this treatment was for chronic low back pain and headaches. I have a lot of mets in my lumbar spine which they felt was the problem. It was a single treatment but, unlike previous treatments, it was mid-line so likely caught some of my stomach and colon in the field. I have not had skin reactions in the past (with the exception of when I had multiple treatments during my initial dance with BC) but as I was walking from the treatment the skin on my back immediately started to itch. The radiation therapist called me back and put lotion on it - it's still a bit irritated, likely because the skin is so think along the spine. By the time I got to my car the nausea started to hit getting progressively worse during the ten minutes it took to get to my office. I didn't feel like I was going to vomit but after grabbing my things I only made it as far as my car in the parking garage. The Gravol helped, I managed to eat dinner, but my stomach was definitely not happy. The other side effect was fatigue. I could barely keep my eyes open, went to bed early and slept like the dead. Today I feel fine beyond the sore back (and skin still tender) and fortunately, the gastro issues at the other end which they said might be a problem have not materialized.
It will be interesting to see how much of a response I get from this latest treatment. As I indicated, I have been hesitant, not out of fear of radiation but uncertainty that it was actually caused by the cancer. Back pain is such a common issue as we age and be caused by so many things. Having said that, Lita provided some solid advice, if you don't deal with it soon enough you can having other issues materialize. I feel that the pain in my back is different today. I'm still sore of course and I am taking pain meds (have been from months due to back/hip and some soft tissue issues under my right ribs due to the peritoneal mets) but somehow it seems better. May just be a placebo effect but only time will tell.
Wishing all of you having rads great success. It can be tremendously effective in maintaining our QOL. Pat
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Ive never feared radiation either. I think I’m just scared of everything right now.
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Not sure about anyone else, but the thought of a new mattress sounds wonderful! I sleep like crap now since all this started and just roll and toss and turn all night long. Between the bone pain and the night sweats, sleep never wins. LOL. Maybe I should break down and gift myself and hubbie one for Christmas. 😁
Take care all,
Jenn
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Ha. I did better than that Jenn. I've been doing some renovations on my house with an aim to make sure it is ready for sale should I need to downsize to something easier care (I have a heritage home with a big garden... nuff said but I love the old girl) but also to make it more comfortable for me when and if my health declines. One of the presents I gave myself was an adjustable bed. When I was first diagnosed I had a lung full of fluid and every time I lay down I would have a coughing fit. Plus, my back has been an ongoing struggle so having a bed that would take the pressure off my lumbar spine seemed like a really good idea.
However, this gift is a long time coming, still waiting. The renos took longer than anticipated and I had to push delivery off from this Friday to next week because of the radiation treatment to my back. The RT warned me about any kind of vigorous exercise or movements that would put pressure on my back for the next few days as it would be weakened from the treatment. I know myself too well... I need to get a new area rug in place which is too heavy for me. I just know that I would do something stupid!
Next up... sectional couch and what I lovingly refer to as a "big honkin TV".
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Ha. I did better than that Jenn. I've been doing some renovations on my house with an aim to make sure it is ready for sale should I need to downsize to something easier care (I have a heritage home with a big garden... nuff said but I love the old girl) but also to make it more comfortable for me when and if my health declines. One of the presents I gave myself was an adjustable bed. When I was first diagnosed I had a lung full of fluid and every time I lay down I would have a coughing fit. Plus, my back has been an ongoing struggle so having a bed that would take the pressure off my lumbar spine seemed like a really good idea.
However, this gift is a long time coming, still waiting. The renos took longer than anticipated and I had to push delivery off from this Friday to next week because of the radiation treatment to my back. The RT warned me about any kind of vigorous exercise or movements that would put pressure on my back for the next few days as it would be weakened from the treatment. I know myself too well... I need to get a new area rug in place which is too heavy for me. I just know that I would do something stupid!
Next up... sectional couch and what I lovingly refer to as a "big honkin TV".
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Hey guys - I'm getting radiation (cyber knife) treatment to my lumbar spine, at the L1 spot. It will be only a one time treatment. What side effects should I expect? The last time I had rads it was for 30 days on the breast and chest wall, and I got emu oil to help with the skin. I don't have the emu oil anymore. Should I be prepared with it this time around?
Pria
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I had pinpoint tattoos on both sides of pelvic bone and just to the left of my bellybotton. There're so tiny you almost need a magnifying glass. I never burned or itched or even got pink. I have to google gamma knife to see a definition. I knew about it but never researched it.
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Hi Utopria,
See the discussion above re: side effects from a single radiation treatment. I don't believe you will have much, if any, skin reaction from a single treatment.
I have only seen the term gamma knife used for brain radiation. Did your RO use this term?
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Yes Sadiesservant - This is SRBT treatment (common name: Cyber knife or Gamma knife) which stands for StereoTactic Radiobiology treatment I think. I'm getting it done in MD Anderson. Yes they made three marks on my body and only tiny tattooed me in one spot in the middle. Thank you ladies!
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Hi Utopria, I had a single spinal SBRT treatment last January to my L-2. My side effects consisted of a bit of nausea about 15 minutes after my session. I vomited once and then felt much better. I didn’t have any skin problems but I did have some fatigue though I also get fatigue from the Kadcyla infusions I get so it’s hard to say how much is attributable to the radiation. The good news is that my back pain pretty much disappeared and my scans following the radiation have been pretty much clear in the bones (I only had the one tumor remaining after chemo) although I did end up with a compression fracture which has made reading the scans a little trickier for the radiology team. The fracture has also caused a little new pain but as it has been slowly healing, the pain has nearly disappeared. The latest spot to pop up in my little game of whack-a-mole is a tumor in my psoas muscle so I’m about to undergo SBRT again, this time it will be 5 sessions. Fingers crossed that it will work!0
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Hi Utopria, I had a single spinal SBRT treatment last January to my L-2. My side effects consisted of a bit of nausea about 15 minutes after my session. I vomited once and then felt much better. I didn’t have any skin problems but I did have some fatigue though I also get fatigue from the Kadcyla infusions I get so it’s hard to say how much is attributable to the radiation. The good news is that my back pain pretty much disappeared and my scans following the radiation have been pretty much clear in the bones (I only had the one tumor remaining after chemo) although I did end up with a compression fracture which has made reading the scans a little trickier for the radiology team. The fracture has also caused a little new pain but as it has been slowly healing, the pain has nearly disappeared. The latest spot to pop up in my little game of whack-a-mole is a tumor in my psoas muscle so I’m about to undergo SBRT again, this time it will be 5 sessions. Fingers crossed that it will work!0
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"whack-a-mole" ....lol... that's totally how I feel.
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I totally agree with the new mattress. The other option if you have a Costco near by is the memory foam mattress topper. I put it on top of our mattress and I feel like I am in the most comfortable nest. I add a heated mattress pad and a down comforter and so much pain is gone. the mattress topper is $150 for the king size.
you will need 20" deep sheets which I could only find had bed, bath and beyond, however.
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Hi,
Could someone tell me what bone mets feels like. Since I started carbogem my lower back hurts. It does not hurt when I am lying down or sitting. In the morning I cannot stand up straight for about 10 minutes. I also have achy joints. I do have spots on my spine. My spine does not hurt.
Thanks
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evening all, 1st Rads done, RO rx'd zofran and instructed me to take it prior to each appt. I felt nauseous during treatment when they hit my thoracic region, and a tightness across my intestines/bladder but nothing painful just an off sensation. I was able to eat dinner but regret having done so
. I am also very tired, I. Not sure if it was caused by the Rads, the build up of nerves and finally relaxing, the fact the Mets doesn't allow for comfortable sleeping, etc.AlwaysBePositive— yes a new mattress or at least one of the 'deluxe' foam toppers should make sleeping more comfortable . . . hubs and I thought maybe my back troubles were from our old coil mattress and switched to an all foam one shortly after leaning that the cancer returned. BigLots of all places is where we got ours, I was afraid there would be a 'smell' but thankfully there was not. And when I'm able to sleep I'm comfy.
LisaJo - as far as Bone Mets feel, I can only speak as to what I felt. Pain began in my left hip, I'm an avid walker, but this felt deeper then a muscle strain, and it was incredibly painful to sit, nor did the pain cease with rest or lying down. The least amount of pain was when I walked a side step. The pain feels/felt like a deep dull ache, sometimes there is a sharp flutter thru myiliac crest and sometimes a thumping ache in my sacrum. There's is a constant crushing sensation in my lower back (turns out there's is a 2.2cm lesion that is causing compression of my spinal cord) that has caused me to become 'stuck' on the living room floor a few times! There is also the sensation of bruising from left hip across the lower back/upper butt to right hip, it feels as if someone squeezed the tissue in that area really really hard.
SweetDreams
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thank you MargaritaMI for the information... hope it will do the trick for me as well...
Good luck with your next round of rads...
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LisaJo.....I have bone mets to skull, neck, shoulders, sternum, ribs, spine in 3 places, hip and femur. I'm not aware of the skull mets. The neck and shoulder mets are a deep, dull, ache with sharp stabs at times. The sternum feels like a bad bruise. The rib mets no longer have stress fractures as I've been on Ibrance/Letrozole for 20 cycles and Xgeva monthly for nearly 2 years but when I had the fractures they caused sharp, severe pain when I moved. The spine mets also feel like a deep, dull ache with sharp stabs at times but most of my pain from the spine mets is now caused by nerve damage to the spine. I'm on a large dose of opiates for pain but still have breakthrough pain. My tumours are now stable due to the treatment.
Sending love to everyone. I've been off for a while. Sometimes I like to just try to forget about cancer and think about other things but I still think of you all with much love
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when I was initially diagnosed with bone Mets de novo, my MO kept asking me if I had any pain and seemed quite surprised that I kept saying no.
I had, though, for several years had odd sensations that may be were or were not bone Mets!
For example: my ASIS, if I put pressure on it would always feel bruised. Also, in about 2011, I was in the middle of a qigong retreat when suddenly my lumbar spine “popped” and then after that every time I stood up, switched weight from on leg to the other, etc, it would make a very loud popping sound (very odd for a person in their 30s IMO). I also felt a tenderness if my lumbar spine had pressure put on it, like it was bruised. I have had neck pain for a while but I always contributed that to my posture and thought it was muscular. Around thanksgiving of 2014, my low back went out and I couldn’t sit or bend over for 6 months!! I went to several doctors and asked for them to do imaging but they told me I was stressed out from being in medical school (Chinese medicine) and one even suggested I take a year off school to calm my stress. They denied the imaging and sent me home with muscle relaxers. No one thought that it was possibly bone Mets!
Turned out - I had bone Mets in all the places where I was experienced odd sensations.
I may have a high pain tolerance??? I am not sure.
I do know that I don’t, today, have the types of pain that people describe on these boards and my MO described to me. It sounds quite excruciating and doesn’t ever go away.
To make matters more confusing, I was in a horrible car accident about 2 months before I was diagnosed. My neck suffered soft tissue injury and since then it just wants to be massaged constantly. It feels like it is filled with cement in my minds eye. I have/had Mets in my cervical spine so I really can’t wrap my brain around what the impact of all of this is.0 -
Interesting discussion of pain...it appears to be somewhat different for each person. Mine felt like bruising when I felt it prior to Dx. I thought it was just age related. Now, after three years of treatment it sometimes feels like an electrical burn pain...sort of buzzy and sharp. That happens where the nerves rub against lumpy healed sclerotic places in my back. It’s a unique feeling.
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Before I was dx, I often felt aching pain in my hips - especially when I was very active doing hikes or heavy duty housework- but figured it was just because I had a desk job, didn’t exercise daily, carried extra weight. After my PET, they told me I was one wrong step away from fracturing my hip. I know I do have a high pain threshold (except when I have a bad IV put in for some reason) but I also think many people are willing to go along feeling pain as just a matter of life, especially when in the throes or raising young kids, working, etc...
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I too got a new mattress when I was first diagnosed again in 2012. I too had lung fluid, in the right lung that had a tumor in it. I had a thoracentisis to remove the fluid. I had a compression fracture in my spine too which they did a kyphoplasty to repair it. I've since had 3 more. My mattress is a tempurpedic and it's on an adjustible bed. It helps a little. I told my husband we don't need hospital beds at the end. I'm in one already. It helps when I have a cough to bring my head up. My lower back is always in pain, as my shoulders and neck are too. I did have 2 weeks of radiation for the pain. It didn't help. I didn't want anymore tatoos (I got 3 when I was first diagnosed stage 1 in 2005, and did 6 weeks or radiation, and the tatoos hurt). Instead the used sharpies and tape. The did use the middle tatoo that I got the first also. I just couldn't go swimming (it was July) and couldn't wash that area for 2 weeks. It held up. I have mets in my spine, ribs, hips, pelvis, skull, sternum, collar bone. I tried medical marijuana, and that doesn't take the pain away. I don't like the opoid drugs either. They just space you out, and don't take away the pain. I just take my tylenol, and deal with it. Good luck!
Lynne
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