Bone Mets Thread
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Lita, thinking of you today as you process through your scans.
Princess, you are also in my prayers as you navigate your options.
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Isn't stage IV and terminal awful words? Makes people other than us seem like it's all over and we have one foot in the grave. I have to keep thinking that Life is terminal.
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Those words nearly killed me in the beginning princess. I was so convinced that I was dying imminently that I went in to a catatonic state for three months. They should really revise their terminology. I try not to think even of the word cancer, more of a collection of rogue cells that my body is co existing with. I find it easier
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Vevs, I like your way of thinking about the rogue cells! I am one who practices intentionally how I frame this disease. I never call it “my" bc. I will not claim it as something I own. I never capitalize it or call it the big c. Gives it way too much importance. And I see myself as living with mbc, not dying from it.
princess, wow, you are super new to this! I am glad that you found the support of this forum. I am one who did not have lymph node involvement, either. Diagnosed ilc. Have been stable since the big treatments in 2011. Left breast, but mets to the left hip, right rib and scapula. I hope my story give you, well, hope.
I also have copies of my scan reports and cds of them. I dont look at the cds. I didnt get scan reports till about two years in, I was so absolutely frightened to read them. I reached a better place in my thinking and got all the back reports and get the new ones asap.
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Jaylea, thankyou!
Vevs, OMG! Catatonic! How devastating. I'm working hard at doing all the things I've been doing. Today I build another pen for 2 chicken hens. I dug 2 post holes in the dark last night. But that's me. I'm still afraid to look at the scans but I want them. I'll ask for them this week.
Yes , Devine that's a great way of putting it. Living with it, not dying from it. I need to work on that frame of mind.
Question. If I have ILC mets to the bones, should the primary area be removed? Is it still potentially active and putting more out? I understand we are all not docs.
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Princess- I was diagnosed stage IV de novo with bone mets and surgery wasn’t considered as an option. Things have been stable for 32 months. Now I’m glad I didn’t have surgery. It is a lot to put your body through
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I wonder if that's what I have now girls . Sorry I haven't been here for a while but I have been in big trouble. My Cancer in the bones has moved to my bone marrow and my hemoglobin keeps dropping about every 3 weeks to about 60-70. I have had 2 blood transfusions which I have tolerated very well with levels' back up to the high 90's . The last hormone drug (started with E I had to take 2 diff tablets) gave me inflammation of the lung and I ended up in hospital with pneumonia which nearly took me out. The doc wants me to try chemo tablets which I am worried about with the side effects but he has also put me in for a trial of a new hormone blocker at Peter Mac in Melb. I haven't heard from them yet so I feel caught between 2 hospitals. I now have terrible pain in the muscles of my lower arms and legs and can get no relief, I have got three different strengths of medical marijuana (legal here with a script) coming from an alternative GP in Newcastle NSW so hoping that gives me pain relief . My onc leaves for Canada for a 10 month sebbatical in a week so I am really stuck
Can anyone give me any idea what could be happening with this pain in my muscles and what sort of pain relief I might need. OxyContin and Endone only take away about 50% of the pain
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Delvzy, I am so sorry you've had such a scary time and pain. I hope you and your team will find the best treatments. Wish I had some advice but I know others will chime in.
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Oh Delvzy, I am so sorry to hear the predicament you're in. I'm sure you're on it, but make contact with your new MO immediately. Also, use those two hospitals for support on the pain front. When you're in pain it's hard to strategize and make difficult decisions about treatment. I am convinced once you get your pain under control and a workable treatment plan, things will dramatically improve. Hugs to you.
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Hi Delvzy....as far as pain is concerned you might want to try using a 25mg Fentanyl patch.
It doesn’t come with major side effects like constipation or sleepiness,
You replace the patch every three days instead of constantly popping pills.
I managed to get off fentanyl without a problem when I forgot to replaced it and suffered no pain.
I hope you feel better...
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delvsy, so sorry you are in a bad way right now, I can only share with you that sometimes chemo is what provides the pain relief, while lowering cancer burden. I wasn’t given any choice but had to start taxol right away. I was having bone pain from widespread bone mets. The drs told me that my pain should get better.....it did!! Within 1 week it was better! And I just had good scans that show improvement! I just finished my 9th taxol. Now the bad news, yep the side effects have gotten the best of me this last time. But my point is the chemo could actually help with the pain! That would be my hope for you:)0
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I know its a booger, but radiation and/or chemo really does help with the pain.
I thought I was done with taxotere, my onc said I would have 4 rounds. However, I got a letter from my insurance company that says I've been approved for 4 more rounds. *sigh* as much as it has helped, I just don't know if I can do 4 more. At some point its a quality of life issue you know?
Today I have some good news though, I drove myself to work for the first time in 4 months and I'm no longer using a walker, I'm on a cane!
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Delvzy- Hope you’ve been able to get in touch with someone who can help manage the muscle pain! So sorry that you are having these issues right now! Cancer truly stinks...
Do you have a palliative care doc who can help you with a comfort plan while they figure out treatments? QOL is a huge part of this “thing.”
Sending hugs from Colorado!
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Had great results on my quarterly bone scan - they didn't see anything at all. The sclerotic lesions aren't picking up any tracer. I'm feeling quite lucky and grateful especially as I near the 2 year mark on Ibrance and the 3 year mark of my MBC de novo diagnosis.
On the CTs (and forgive me if I already shared this), there is one axillary lymph node on the opposite of where my BC was found that grew a tiny bit and is noted as more prominent. We'll wait and see on this. I also have an increase in blood clots in my lungs which is a bummer since I'm already on thinners...anyway, they've doubled up my dose and we'll see how things are in a couple of months. Everything else is still clear.
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IWrite,
I’m a bit late in responding to your posts from ASCO, but wanted to say thank you for reporting back some of your learnings. The info. on ‘Driver’ is much appreciated. I will look into that. So many things happening so fast with MBC. It’s all good, but hard to keep up sometimes.
Thanks again.
Lauri
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Great news Jen!!! Happy dance💃🏻💃🏻.
Lauri- Glad the information was helpful! I was just trying to keep up and pass along the piles of info coming out of the conference
Delvzy- Have you gotten help for your muscle pain?? Hoping it’s getting better.
Sending ((())) to the group!
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Hello from Cebu, Philippines.
I just received my bone scan results - lots of bone mets. I am still overwhelmed, and in shock.
Initially diagnosed when I was 32 years old last 2013. Invasive Lubular Carcinoma. Went through surgery, chemo and radiation. Everything was fine until last week when I received my CA15-3 results which was 64 (normal rage as I understand is 0-30).
I will still be seeing my doctor today to discuss treatment plans. I have a 10 month old son and I am now very terrified
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Kristine, you will find unconditional support from this group. Of course you are in shock. In many ways this is the worst time. You have so many questions, and there are so many unknowns. Once you settle on a treatment plan, you will develop more of a routine, and things will get better.
As you read through these posts, you will see many success stories. There are more treatment options than ever. Please feel free to ask questions and let us know how you're doing.
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Hi Jaylea,
Thank you for reaching out. I did not expect to go through this again
I appreciate your encouragement, it helps a lot. I will post updates here as soon as I have more information. Thank you and God bless!
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yay Jen! Love seeing good results.
Welcome Kristine.
Hi everyone. Nothing to add at the moment but I think of you all often.
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Hi IlliMae,
It's nice to meet you
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Kristine, I have bone mets in almost every bone in my body. I was freaking out about how many places they were. I’m 3 years 4 months out and doing well. Bone mets stable. Lots of treatments available to us now and more coming down the pike.0
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Hi fellow warriors, first so sorry kristenN that you are joining us but now that you are may you find love and support also wisdom!
Now I have a problem. I was originally dx 2013 stage3 then 4 in January 2018 with widespread bone mets, small liver and small lung mets. Tried tamoxifen, had spread so stopped. Then dr said we need to go harder and started taxol. The taxol did make me better almost immediately the pain was more tolerable. I’ve had 9 treatments of it. 3 of those were unbearable including the last one. I felt like I needed a break so went for my dr aappt yesterday and had the talk. Well he was totally confused by all of it. He didn’t understand my symptoms, fever, severe bone pain, bone stiffness trouble walking, jaw pain and stiffness, I payed in the bed crying for 3 days. It was bad enough for me to think welp I can’t do this. Anyway he was shocked. I have had 6 other times that were ok? Much more tolerable? Some even felt better that before I started it. The problem is it hasn’t been consistent, not getting worse each time? I asked to look at my bone scan. Omg there is a part of my skeleton that’s not blackened! I had been complaining for the past few weeks about new leg pain which they all just scratch their heads at. Well now I know what that pain is!!! Nobody ever told me widespread meant every part of body! So what I wanted and thought seemed reasonable is to just take a week off. Let my body get a little room to regenerate. Dr didn’t think it would do any good but agreed to do it. Lol thank dr?! Way to pout. I told him if it was jeopardizing me at all then I would just go ahead, he said no it will be fine. Btw I had just had good scans that showed stable with bone mets and improvements with liver and lung spots. So overall his advise to me was we could switch to the red devil cuz you’ve never had it, I said yes I had it in 2013. He then said we might could switch to Abraxane. I like that idea. But first he says I have to start taxol back up and see how it goes again . Anyway the longer I have with this the more I start to see and get scared that it’s much worse than they act with their words. Nobody ever told me I had cancer in my right leg. Well that would explain the pain!!!! Has anyone else had experience with weekly taxol? Anyone have widespread and outlive yourself;) you know, live a fulfilling life despite what you thought would surely happen? Also where is the board to complain about husbands cuz I need that one too;) lol jk not really love and peace to you all!0 -
Hi chef, My left tibia is full of mets and it ate a good portion of the bone. Just had a rod put in. Also I have substantial pain in my left leg due to a met in my hip socket which is pressing on nerves into my leg. Do you have a radiation oncologist and an orthopedic oncologist on your team? I would suggest that be your next step. Are you at a NCI designated cancer center? That might be a good next step as well.
My left leg kept getting worse and worse and my prior oncologist ignored it (stable scan why do you hurt). I was shocked when new team told me how bad my leg was and I needed a rod. Also radiation will be in the mix to remineralize the bone and also deal with the hip socket met.
I'm starting taxol in a couple of weeks so can't speak to leg pain from Taxol in the metastatic setting.
I understand your feelings of discouragement. I feel that way every day. Pain does that. See if you can get to the right people to fully evaluate your situation. Taxol is probably working but you may have already had a bunch of damage prior to diagnosis.
You remain in my prayers. I have been grateful for your encouragement. This isn't the end of your story.
Much love,
Mary
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Marlark, Hi friend:) good to hear from you! So about radiation I was told more than once that since the bone mets were so widespread as in from skull down, both arms and legs plus pretty much whole torso, radiation just wasn’t an option. I’m sure if I complained enough about one spot being the most unbearable maybe they would but that’s just it. For example I skipped my weekly taxol yesterday and to be honest I feel better already! I mean yesterday I still could barely walk from pain and stiffness, now I’m back to usual hobble;) dr didn’t understand the going up and down with side effects. I do have an orthopedic oncologist and am going to KU cancer center. Thank you for your prayers and encouragement:)0
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Chef, they don't radiate everything but can radiate problem spots to help with pain. When I went for leg pain they asked me to point to where the pain started. I pointed to two spots and they could confirm that there were mets there on scans. It would be worth talking to a radiation oncologist about.
How many Taxol treatments do they have planned for you? I've heard that healing mets can hurt
Mary
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taxol was supposed to be indefinite. Stay on what works until either you can’t stand it or it stops working. Even one ofthe nurses acted like that was weird.
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Yes, radiation oncs can spot-treat bone mets. I've had it done to about 4 different areas over the past 2 years, and it does help with the pain. I had bowel incontinence several months ago b'cuz mets were strangling/pinching nerves down there; I couldn't feel anything b'cuz that area also went numb. It's much better now (I still have a little incontinence now and then, but not like it was). Keep in mind the radiation continues to work for several wks after Tx, so you won't always get immediate relief.
L
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chef47 I'm so sorry to hear of all the trouble you are going through. I too have extensive mets throughout all of the weight bearing bones in my skeleton. As my MO put it, there are "too many to even try to count". When he told me I was in very real danger of my spine collapsing and reviewed the warning signs it completely freaked me out (even more when I began experiencing one of the warnings as an atypical SE of chemo!!). I have a very fast-growing cancer, Grade 3 with a high Ki67,and Taxol kicked it's butt. We scanned after I finished 12 weekly doses and there were good signs of healing in my bones (in addition to the rest of it). But the SEs did get progressively harder to deal with for #9-#12.When I was put on the 3-week dose of Taxol the SEs were too much, almost landed me in the hospital (should've been but was too sick to get there), so we skipped the last 3-week dose because they felt I had already made enough progress and was continuing with H&P. It was six months of sheer hell before I ever thought there might be a light at the end of the tunnel.
I did have some new severe bone pain in my ribs, was afraid that the mets were growing again, but it was determined that the pain was actually due to bones healing, which can even cause intense cramps/muscle spasms. Most of the other bone pain I am experiencing is due to the Herceptin/Perjeta I'm on now (in my legs), so I stopped obsessing over bone pain. If the pain is due to healing I can deal with it. But you do want to make sure it's not due to peripheral neuropathy, which is the biggest reason why many women can't finish taxol. I didn't have any sign of it until a couple months after I finished taxol, but it's pretty intense now and we just doubled my gabapentin dosage so I can get some sleep.
9 months ago it was all I could do to get out of bed and get dressed each day, today I am hiking, swimming, and with my doctor's blessing back in the gym doing strength training. I just try to remain aware of my body and not take casual risks like I used to. I just got home from a 10 day camping and hiking trip to Wyoming, something I was afraid I'd never be able to do again. It's too soon to say that I'm going to outlive myself, but I can tell you that it is absolutely possible to live a full, active life with extensive bone mets.
Don't know if that's any help, really just want to reassure you that is very possible to live a full life despite having extensive mets throughout your skeleton. If the taxol was working (sounds like it was), I'd personally give it another shot or switch to Abraxane, which is the same paclitaxel but without the solvent that causes so many of the SEs. Wishing you all the best, and that you have results as good as mine have been.
Lori
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Hi Chef,
I agree with the others regarding looking at radiation therapy (and thank you Lita for encouraging me not to wait too long). I also have extensive bone mets and, while my MO is convinced everything is stable, I started having a lot of hip and groin pain about six weeks ago. While I can still walk fine, it is constant and unfortunately the referred pain is extending into my “private bits”. Definitely uncomfortable. A CT of my right hip confirmed the extent of the mets, in my hip socket, pelvis and pubic bones (the likely culprit of the referred pain).
I have a great team. MO called me late Friday night, sending an email to my RO requesting she see me. Met with her today and she expects scheduling to call me to set up an appointment to plan treatment andzap the little buggers before the weekend. This is my second treatment - she zapped my lower spine last year when I suddenly had severe sciatica. One treatment and it was resolved.
Don’t hesitate to ask for this if you have specific areas of pain. It can do wonders.
Hugs to all. Pat.
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