Bone Mets Thread
Comments
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Ihopeg, "no cancer cells" sounds good! Keep us posted on what's next.
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Ev-11 So ILC Mets are harder to detect with certain scans?? I had no clue and ILC was my initial diagnoses until the PET showed the Mets to my bones. I did see that only a small percentage of younger women end up with ILC in the first place and it was a little rarer than the rest. Has anyone else showed diffuse hepatic steatosis? I guess it’s called a fatty liver.....some of this stuff is just a lot to take in and figure out
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thanks for the answers to moving. My daughter wants me to see an onc at a MD Anderson affiliated hospital in Indianapolis. I'll have to find someone local near Louisville Ky for routine appts.
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Candy....I have been having 3 monthly full body bone scans for two years and my oncologist believes they're totally reliable. He relies on them to check for progression. He has explained to me, however, that if there is sclerosis (bone that has healed over the tumour I think is the way to describe it but one of the others might explain it better) it's not completely possible to detect if there's any activity beneath it but it will show if the tumour has grown. Tumour markers are not totally reliable either but they help to add to the picture. Oncologists with experience will be on top of this, I'm sure.
LovefromPhilly.....I've been having Xgeva monthly for two years and have never had a side effect apart from the fact that the injection is quite painful and continues to be painful as the fluid spreads out. I find that pressing on the injection site afterwards and lying quite still for about 15 minutes helps a lot.
Ihopeg....let's believe that your news will continue to be good news. Sending you more hugs
This week is my two year Progression Free Survival Anniversary from the time I was diagnosed in October 2016. To celebrate the date I wrote this piece on my Facebook page as I've received so much support from my friends via that forum.
I am now two years post diagnosis without progression. Just three more Progression Free Survival years to go and I will be in the 25% who are still living after five years.... this is how it's termed in the studies. Personally I think it should be expressed in a more positive and celebratory way. For me these two years have been the most emotional, most educational, most profoundly influential years of my life. I have learned more about human nature than ever before. I have discovered loving kindness and the warm nurturing instincts that dwell in the hearts of the people I am privileged to call friends. Any time that the events of the past two years have threatened to overwhelm me (and there have been events other than cancer), I have only had to pop in to Messenger and I would find at least one friend willing to lend a hand or a heart. If I had never found myself in this position I would never have known such kindness existed. Not to the degree that I have. While I wouldn't recommend my experience or wish it on anyone, these two years have brought me to tears many, many times. But as many times as they have been tears of pain, they have been tears of gratitude.
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Leapfrog, High Fives and Cheers! Thank you for this post
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I posted a a pic of how to make your insurance approve all tests. I can’t find it now. If there’s some way you can search all my posts, it’s there. I’m not too tech-savy. I hope you can find it. I’ll still be looking for it for you.
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,Good news Leapfrog. Great to celebrate 2 years and overcoming so many obstacles. Take care. Maire.
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Hi I’m from Philly too. Grew up in NE. Just found out have extensive bone mets to entire spine and leptomeningeal disease. What drs do you use? Dont use Claritin yet, although I have it because a side effect of the med I take to effect methotrexate makes my face flush. Nice to meet you lovefromphilly! I’m Ilene.0
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I have spots on spine. They have been there a couple of years. I never had any pain from them. I am on carboplatin and gemzar. My lower back has been hurting since I started it. I also have joint pain in my shoulders and the muscles in my neck hurt when I turn my head. I don't really know what pain from bone mets feel like. Could someone share please. Thank you.
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Lisajo, these are also symptoms of dehydration, which can cause lower back and flank pain and muscle stiffness such as what you mentioned in your neck. Chemo is extremely dehydrating. Try drinking more water and perhaps some coconut water (which is deeply hydrating) for a few days and see if that helps. Also, ask your chemo nurse to give you the BIG bag of fluids with each infusion. I have this order permanently in my chemo chart. It can make a world of difference.
Also, I see you've been on your current treatment combo since July, so about 12 weeks. Many MBC treatments cause a great deal of pain in the early weeks, sometimes from tumor flare and die-off.
I wrote the following in response to a question from someone on this thread about a year ago who wanted to know how bone mets pain differs from AI pain. Even though chemo side effects are different from AI side effects, my description may still help you discern bone pain from chemo pain.
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For me, bone pain is markedly different from letrozole pain. Let me try to explain the difference as I experienced it.
At recurrence, I had widespread, extensive bone mets, in practically every bone of my spine, pelvis, femurs, clavicle, and several ribs. Some were painful (particularly spine and hip mets); others never hurt. The first tip-off that something was amiss was that I could not get comfortable sitting, and shifting positions did not help. Bone mets pain tends to be persistent and constant, like a drilling ache at your very core. Lying down does not bring relief. Sometimes it is more comfortable to stand than to sit. Your bones feel deeply tired and mad as the devil.
Letrozole pain, on the other hand, is not as constant-- it fluctuates throughout the day. It's more of a stiffening, crampy pain centered in the joints. It's worse in the morning or when you've been still for a while. You sit in a car for an hour and then it's hard to get out and straighten up. You wake up with stiff fingers and it's hard to grasp that first glass of water. Your feet make you wince and say bad words with your first dozen steps of the day. BUT... keep moving, take a shower, stretch a bit... and the joints loosen up.
If you have reason to believe you are feeling something concerning, ask for surveillance.
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Hope something in all of that is helpful to you. Feel better soon!
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Check your levels of magnesium and calcium and read the results of this study there's a strong correlation between breast cancer rate of survival and proper levels of magnesium. One of Magnesium's function, among the other three hundred, is to relax muscles which reduces the pain created by the lactic acid that cancer cells create.
Associations of intakes of magnesium and calcium and survival among women with breast cancer: results from Western New York Exposures and Breast Cancer (WEB) Study
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4759402/
A study published in the year 2000 found that almost half of cancer patients admitted to the intensive care unit (ICU) had low magnesium levels.13 Magnesium deficiency may have contributed to their disease, but it may in fact also be due to their cancer treatment.
Cisplatin, a platinum-based chemotherapy drug used to treat various types of cancer, can cause a number of serious side effects, including magnesium deficiency in up to 90% of patients. The results of a 2008 study indicate that prophylactic (preventive) magnesium supplementation can prevent these side effects and decrease the severity of cisplatin-induced kidney damage without interfering with the anticancer effect of the drug. In fact, among cisplatin-treated cancer patients, those given magnesium had significantly slower disease progression and longer survival times, when compared with patients given a placebo. The four-year survival rate was 63% in the magnesium group and 36% in the placebo group.29
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Thank you! I don't have any deep pain-sore and stiffness. I drink water, but not enough. Your post has been so helpful. It's bad enough dealing with liver mets!
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Miomix- How are you doing on the xeloda.? How much are you taking and how long will u e n it all together Months/ years. What side efffects are you having?
has it helped you? I mean mets wise?
Raven
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Hi Raven,
Im taking 4\4 one week on one off, and I really appreciate having that week off. It’s like taking a weeks vacation off from cancer land.
I won’t know how well it’s working till I get the results of a Pet scan I did last Friday, and meet with my MO this Friday. I’m worried that it’s NOT working because other than fatigue I’m not suffering from any typical side effects. I barely need to cream my hands and feets. So maybe I’m resistant to it...I don’t know...my liver markers went up eight fold since I started but I took care of that pronto with NAC.
However, I have been experiencing increased body aches lately and worry that they are signs of progression, but all these TX are known to cause aches and pains and to fail at some point, so I will try to remain positive till I get the news.
I’m counterbalacing the suppression of my immune system with Chaga tea, as more than cancer I fear C diff, fungal and viral infections that will surely kill me, but I won’t know if the chaga is working till I check out my WBC levels.
Like many of us, I hope to stay on X for a long time....it’s been relatively easy.....
I’ve been on it 4 months, how long have you been on it and how’s going for you?
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Ihopeg Hello Philly friend! I am sending you a private message
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Interesting news...
You can cut your cancer risk by eating organic, a new study says
https://www.cnn.com/2018/10/22/health/organic-food-cancer-study/
You can protect yourself from cancer by eating organic, a new study suggests. Those who frequently eat organic foods lowered their overall risk of developing cancer, a study published Monday in JAMA Internal Medicine finds. Specifically, those who primarily eat organic foods were more likely to ward off non-Hodgkin lymphoma and postmenopausal breast cancer compared to those who rarely or never ate organic foods.0 -
Crazee-Fatty liver was noted on both my PET scans and abdominal MRI. I don't think I ever would have known about if I hadn't been diagnosed with MBC. My guess is that much of the population has this condition and doesn't even know it. I don't expect any ill effects from it. I googled it a long time ago and can't even remember what the implications are-basically, I blew it off!
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Hi everybody, I am new to this site and finding a wealth of info. I hit the jackpot one year ago when I had some quite nasty and atypical back pain. I was diagnosed de novo and occult. I had no symptoms, and no lump. 3D mammography was normal as was my ultrasound. Like many others here I was very healthy, do not drink, do not smoke, have very few risk factors and no family history.
I have extensive bone mets to entire spine, sternum, a few ribs, humerus, sacrum and pelvis. I have 9 spinal fractures of various sorts, some crush, some endplate.
I had chemo - taxol for 14 rounds with herceptin and prejeta and one single dose of radiation to the worst affected vertebrae. Sailed through treatment with very few side effects apart from one nine day hospital stay due a rare neoplastic fever. One year later I remain on herceptin and perjeta every three weeks and my last scans show no evidence of active disease, normal blood results and tumour markers are also normal at 23. These have been very accurate with me, when first diagnosed they were1989. I have had no surgery apart from port placement. Feeling good, back working and the only meds I take are Paracetamol once in a while when I get backache.
I am looking forward to becoming part of this community that nobody really wants to be part of. Bit of an oxymoron that!
As per my username, we foster kittens for a local animal rescue. We specialise in the hand reared, bottle fed orphans. I currently have 13 cats here, some foster, some of my own and a beautiful Golden Retriever.
Hoping to get to know some of you better
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FosterKittenMum, Welcome to the club no one wants to be in, you're right. At least we have each other though!
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Foster kitten mom, welcome from a fellow kitty lover. I have 3 rescues and volunteered for a rescue shelter until I was unable to physically feed and clean. I have extensive widespread bone mets to almost every bone in my body. I’m on Ibrance/ Letrazole/Xgeva and stable.0
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Welcome Fosterkittenmom, It's wonderful to hear that the treatments have been so effective. You'll find a wealth of advice here which hopefully you won't need given that you are doing so well.
I'm also a cat lover but Sadie (the collie) ... not so much. As a result I am presently a one dog family.
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Fosterkittenmum- Welcome to you from MN. I find it very admirable that you help cats and kittens. We have a brother and sister, Oscar and Patches whom e love to death!! Cats are pretty special!!
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Minnie31 Please, could you tell me what test showed the muscle Mets?+ Two weeks ago, I just woke up with severe pain in my hip/femur area. I'd been doing some serious cleaning, climbing up and down on ladder, so I attributed it to that. Now two weeks later, pain is still there and worse. Walking is near impossible. I had a x-ray on hip to rule out a fracture. ( I have ost) Well, results were no fracture. My onc has ordered a bone test for next week. But minnie31, the pain feels like it's in my muscle tissue. By favoring the sore area, and walking so funny, my while leg is acting up now. I'm just concerned that a bone test will not pick it up. Thank You so, Sue
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I have muscle mets in my back and they hurt like heck. I use a heating pad and alternate conventional rubs with cbd balms. My T3 which was radiated once b4 is acting up again too.
Getting in and out of chairs, the car, and turning over in bed is a real challenge. Rx Voltaren gel helps. See if your onc can write a script for that.
L
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Lita how'd they discover your muscle mets? I didn’t realize you had those. Does the pain differ from that of the bone mets pain
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Hi chef,
I am shocked to see you had 9 nodes involved at 1st dx and they did not do scans? I can't understand that.
I was in the private system all 3 times I've been dx'd. Had cancer in both breasts and as soon as that was dx'd was sent for bone and ct scans. Before surgery. 2nd dx 1 year later...same again. 3rd dx 10 years later...same again. I have been so very lucky and my heart goes out to you wonderful brave ladies. Also chef, over those 10 years from 2003 I did have a few bone or ct scans. Post 2012 my onc ordered a pet scan but more to ease my anxiety maybe...I had recurring rib pain which they checked with scans but dx was inflammation from rads
(chondritis?)
No routine annual scans but used to dx any worrying symptoms
I really reaLly don't get how they did not issue scans with such a high level of node involvement??
Wishing you peace and pain free happy years ahead.
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Sheila, a usual pet scan found them when i was initially dx'd....both sides of spine. The muscles are sometimes more painful than the bones, especially during bumpy car rides 😣
L
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Lita, they were found with Pet? Dang. My ins. denied a Pet. Had a CT July 2018. Nothing showed up. Dr. gave me tramadol which is barely making a dent in pain level.
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I also have muscle mets near my spine - the psoas muscle - also diagnosed via PET and confirmed with MRI and biopsy. It was very painful for several days/weeks but following the biopsy, the pain lessened significantly. I like to think that they destroyed part of the tumor when they took a bunch of needle cores out of it. 😉 But as Lita said, turning over in bed can be very painful and when I first stand up in the morning it hurts until I get warmed up and moving. I’m having SBRT on it next week to see if we can whack it back. I’ll let you know how that goes. For what it’s worth, my MO and my RO insist that muscle mets is rare but of course, some of us still get it despite the rarity. 😬 M
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I've been fighting significant pain in my lower back for months now, but the last week it has gotten so severe it's unmanageable. A few days ago the pain started spreading and now it's almost my entire back, which led me to believe that it's muscular. Having had no injury (barely been able to function!), I can't imagine what is going on. I'm scheduled for a CT Monday... was hoping it would show what's going on. This pain has nearlytaken me out... crying, writhing, I only get relief when sleeping. As of my last PET I only have bone mets in my L2. I'm on my 4th line of treatment in 17 months so progression of any type is scary; I fear I'm running out of options.
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