Bone Mets Thread
Comments
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Silviah - YAY! I’m new here so I am especially pleased to read about GREAT news! So happy for you!
Blueshine - I don’t know the answer to your question but as a brand new mets patient with a single bone met to the rib, I’m wondering if I should be getting a bone strengthener? I’ll wait for responses to your question from others.
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Great news Silviah. I get Xgeva every 3 months but don’t know the difference between that and Zometa.
Today I went to a group for people with metastatic cancer. I’m having some trouble with SE of Tykerb. Diarrhea all night last night. Took Imodium but worried constantly while I was out if I would make it to the bathroom. Even at a support group..really?? I’ve been on the Brat diets since Sat. I guess this is the new normal.
I was going to get a copy of my latest Pet but decided to wait until next week when I see the doctor. It’s not going to change anything until the next scan.0 -
Maire67: There are Rx's that are stronger than Imodium. My palliative care dr gave me a Rx for Lomotil (in pills), so you might want to ask about that.
The only other alternative is to continue taking Imodium and get some Depends. I have fecal incontinence (thanks to BRAIN mets), so I wear Depends AND plastic pants to deal with any possible leaking/seepage incidents.
L
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Blueshine - I have a preference for Zometa. Xgeva is newer and much more expensive and claims some marginal advantage but I am all about immune response. Zometa has significant immunological benefits. Zometa the older cheaper drug but better in my opinion. I asked for it to be added to my protocol for that reason alone. I don't have a lot of bone mets.
The trick with these bisphosponates is to keep the schedule to no more than one shot every 3 months. The ASCO guidelines say 1 per month a year and then move to 3 months but the Mayo Clinic guidelines are to start with once every 3 months. And can go less frequently. Bisphosphonates have terrible potential side effects. Read about ONJ if you want to freak yourself out. The drugs are effective and an important tool but you want to keep the dosing as low as possible, and you can. The drug has an extraordinarily long half life in the body so you don't need to do it very frequently. There are many people who take it only once every 6 months.
I had my first dose a month ago. I personally may decline to take it until July.
>Z<
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Maire67, Tykerb gave me diarrhea, too. I did some reading of old posts here, and saw someone recommended taking it in the middle of the night to have it as far away from food as possible. Since I always wake up at least once, I've started doing that, and it seems to be helping with the diarrhea. Now it's controllable with one or two Imodium a week.
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hi Chef, my damage is to top of femur, collar too I guess, and also my pelvis. Surgeon said it would be major surgery, replacing part of my pelvis, and top of femur. However said he would not consider until I have no other lesions in my body (I have liver lesion too). I think I will be carrying on as I am. Suffering with sciatic nerve at the moment. Hey ho, just get on with it. Here in spain, private medicine is very rare, so hard to try through other channels.
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Hi, unfortunately I will be joining you wonderful ladies to the bone Mets club. I recently was diagnosed with Mets to my bones. Still need Bx but its in multiple bones, seems like all my bones! Skull, spine, rib cage, sacrum, pelvis and femurs. Will have my next oncology visit in a few days to discuss the next step and treatment options. Praying!!!
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Sssonia, welcome! I'm sorry that you find yourself here but you will learn more here then any doctor can ever tell you. I, like you, have extensive widespread bone Mets in just about every bone in my body. I am almost 3 years out, stable and doing very well. I've been on Ibrance/ Letrazole for 34 cycles and get Xgeva every 3 months. Many of us are doing well. Hang in there, the beginning is always the scariest. We are always here if you have any questions.0
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minnie31, I was so worried that my surgeon would say that to me too! I am so sorry medicine is not based on need but too many other factors:/ I do know that they said my hip would have completely broken through really soon without the surgery. The surgery that I had is supposedly very rare? There is another type of surgery where they go and remove cancer then fill in with some type of cement? My surgeon said he wanted to do the other one where they completely replace the bone with titanium rod because it lasts much longer! When he said that my heart ❤️ raced! He had faith that I needed something LONGTERM! The truth is though, he is not the oncologist? Whatever I liked his faith:) looking back I would have done other treatment plans first if it were at all possible because this surgery is actually the worst thing I’ve been thru:/ right before I got the call I was walking, working, everything! Took 20 Motrin a day to keep me going but I did it. Now I’m completely helpless:/ only temporary but 12 weeks?? Yuck! May you find a way to have comfort and the best care! Heating pads, ice packs pain relievers.
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Welcome Sssonia - Get a plan in place and see where it goes. I expect you will be in a good place in 3-6 months with mets disappearing right and left.
>Z<
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Zarovka, thank you for your answer . I really appreciate it ! My MO prescribed it every 3 months, but later i will ask for 6 months. As far i remember i should take allergy pill and hope for less SE.
I really trust the knowledgeable people on this site more than the doctors.
God bless you and together we can go thru this hard time!0 -
Blueshine - Zometa has an effect on the immune system in addition to strengthening bones. There is no documented evidence that the fever and exhaustion you can get after the shot are related to that immune effect, which is just beginning to be understood. However, I opted not to suppress it in any way, just in case. Don't plan a trip to the zoo for three days after your shot and let the side effects take their course, that is my advice.
>Z<
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Hi friends,
I asked my NP today what my next combo probably is after Ibrance and Letrozole and she said they are having good luck with Kisquali and Faslodex as the next line. I was excited to hear about that, except for the 97% of patients experience diahrea with Kisquali part.
Gracie, I learned too that Faslodex used to take 5 or 6 months to show it was working; and then they started giving the loading dose to get the action to work a bit quicker and see now that it works in 3 to 4 months. I can't recall what ended up happening with your loading dose but wanted to share with you just in case it's helpful.
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May I ask how most of you found out it was in your bones? I mean did you have symptoms besides bone/joint pain? I am told this is a side effect of the letrozole and other AIs so how do you tell?
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thanks for the update, Jen, but I thought the diarrhea problem was seen only with Abemaciclib, not ribociclib, which is more related to Ibrance....
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I found mine by sheer fluke...I could not take a deep breath as I had a terrible pain on my right side chest, my GP didn't hear anything but sent me for blood work and an x-ray. The blood showed possible pulmonary embolism so they sent me for a CT scan which found a suspicious spot in my spine, which lead to a contrast bone scan which showed the active spot on my right hip. All this pretty much 1 year to the date of my orginal diagnosis of BC Stage 2 - here I go again
I am so glad I found this Forum) J0 -
gkbuser, for me, bone mets pain was 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.
In my case, it was a routine CA 27.29 that got our attention. My markers quadrupled between checkups.
If you have reason to believe you are feeling something concerning, ask for surveillance. My bet is that you are just experiencing "AI arthritis". Letrozole is an easy drug for some, but for the rest of us, it was like going totally geriatric in about two weeks' time. All the best to you!
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thanks Janky.
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I did have pneumonia hence the trouble breathing! Nothing to do with the bone met, soglad I got the ct scan.
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Sssonia, adding my voice to the chorus of welcomes. Keep us posted as your treatment plan develops. Sending you prayers.
Silviah, I could feel your big sigh of relief coming right through your post. So happy for your great news!
gkbuser, it was SE's from lung mets that got me to the doctor and ultimately in treatment. I have bone mets in spine, sternum, and hip, but they are small and I don't have any SE's with them. I'll be curious what others post.
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Welcome, Sssonia, from a fellow bone mets newbie (been a metster since Sept 2016). Everyone here is very supportive.
Gkbuser, my bone mets pain was a deep, persistent pain. It was more localized than the all over ache from AI's for me.
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My MBC was found by accident. I was 27 years in remission when I had a CT scan for something completely unrelated (and benign). They found extensive mets (primarily sclerotic) throughout the skeleton but mainly in ribs, sternum, and spine. I had no pain at all and still don't, after 13 months on Ibrance + Faslodex and Xgeva. My onc brought my case up to his "tumor committee" (how GRIM), and they were shocked that I have had no pain. I have no SE from any of the drugs so far. Counting my blessings.
Welcome to the newbies....hate that you have to be here but glad to welcome and support you.
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lulubee, your comparison of bone mets vs AI pain is so well explained. I have all that AI pain, but could never put it into those words as you described so aptly.
The mets in my case are hip, rib, scapula and a scattering along the spine. Mine had not reached a point where I had constant discomfort. My hip had mild soreness that I chalked up to age and being active. It wasn't yet an issue when I was diagnosed stage iv from the start. As I did not have any lymph node involvement, it was thought that the bc was contained to the breast. A bone scan was ordered as a baseline prior to chemo which showed suspicious activity so a PET scan was ordered and that was went mets were found.
I think many of us don't have bone mets symptoms, so to speak, before being diagnosed with them.
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NouzayO,
My heart goes out to you. I am continually amazed by the strength and resilience of the women on this thread. I couldn’t tell from the post if you’ve had your little one yet? You will be in my prayers. I cannot imagine going through this without pain meds. I know that is probably not a popular thing to say, especially because there are great alternatives, but they do help my quality of life, even on very small doses. But with your pregnancy, there must be some way (hot tub, yoga, etc.) to help. A pain management expert could surely find a way, I hope!
I am convinced that a cure is coming. There are so many trials going on and progress is being seen. I’m praying for all of us
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Dear gkbuser,
I was having constant pain behind my right rib. X-rays showed nothing unusual,so my ortho ordered a mylogram (I have a pacemaker, or he would have ordered an MRI). The mets showed up in the results. I think pain is probably the best indicator that something is going on.
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Dear Lita, how you are handling this complication you mentioned so gracefully, is a miracle. It cannot be easy. Cheering you on from France. Amarantha
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I wonder why some places where we have bone mets hurt and others don’t? I have bone mets in just about every bone in my body and the only bone pain I ever felt was in my left arm. Once I started treatment the pain has gone away with only an occasional zap of pain that quickly leaves.
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Thank you everyone for your thoughtful answers. Sounds like for many it is just caught while checking for other things. I have such varying ahes: right hip one day left the next, then right shoulder another day it is my lower back. So if I get bad pain in the same spot then I will def ask them to check it out. But in the meantime stay active and use over the counter medicine. Thanks again ladies. Kudos to all of you. I think with all we go through we have learned to be tough and can tolerate alittle more pain and discomfort than the average joe. Love and hugs to all of you.
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gkbuser - before I was diagnosed I was feeling some pain in my hip when I was trying to fall asleep. I attributed it to just getting older. It wasn't bad enough to even take an advil, although I probably should have, so I didn't give it much thought. One day I was shopping and my lower back hurt so bad that I had to sit down in the store. Lower back pain was not a normal pain that I experienced through my life. But, again I didn't give it much thought since it went away and didn't persist. My Bone Mets were found during an MRI of my breasts a week after I had been diagnosed with breast cancer. The radiologist identified an abnormality on my sternum (never had pain in my sternum) and off to the bone scan I went. Surely enough I had bone mets in my sternum, ribs, spine, iliac crests, hips. I felt no pain in any of those areas except the hips when trying to fall asleep. So it wasn't a pain I should have ignored afterall.
You will do what you feel is right for you and I certainly don't want to scare you but I just wanted you to know that bone mets are tricky and everyone has a different experience with them in terms of pain. They can be painful or not. Since you are feeling some pains here and there what is the downside of having your bones checked out?
I hope you take my post as I intended - not to cause worry but to encourage you not to ignore signals from your body. There are no surveillance scans in place to check for mets for non stage iv patients so you have to be your own advocate. You are probably just fine but why not find out.
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I get pain when the mets press against a nerve. That seems to be where most of my pain comes from. As the tumors shrink, the pain goes away, so it’s pretty easy for me to know when an onc med is no longer working.
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