Bone Mets Thread
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Hope you heal fast moth
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thank you everyone! I had an ortho consult today. they will monitor with weekly X rays to see if it's healing well. If it's OK in a few weeks they will swap to a lighter cast. There's a chance the break will open up again, in which case I might need surgery. Still kicking myself that this happened; it was a stupid mistake and all my fault. Pain is improving so that's good now I just have to figure out how to do things with one arm
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Moth, so sorry to hear of your fall. Get well soon.
I am recuperating after femur surgery Sept 9 . Hope you can still go out and enjoy
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Moth, I'm so sorry about your arm! I hope you're doing okay!
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Katyblu/Beth1965 - I am so sorry you guys are having to join us. You found a great group for support and lots of information. The Ibrance group is also very good. These first few months are hard and overwhelming but know many of us live fairly normal lives on treatment. Wishing you many years of success on Ibrance. It was a great treatment for me! Big, long, heartfelt hugs to you both.
IntoLight - Your view sounds so calming! We also have been cruising with a number of couples that finally went to the dark side! It is not the same but still nice being on the water!
Woodlands - I am also starting Afinitor shortly. Had the same thoughts about being immunocompromised. I hate the thought of going back to isolation! We don't eat inside at restaurants nor go to many inside venues for entertainment but I have been going to the yacht club where you have to show your immunization record to get in, family gatherings and immunized friends over... and I got my 3rd shot! First 2 I did not feel any SEs....this one I did for the first couple of days. Hopefully that means it is working?
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Perky 2020,
I was just DX in June …it seems so long to get me on a plan. I started with 10 treatments of radiation to the hip thigh right and left pelvic area.
That didn’t eliminate pain in right light thigh so I had the femur pin surgery Sept 9.
So after radiation I started the Faslodex shot and Ibrance 125, I made it on Ibrance for 14 days. Then told to stop for my surgery. I got another shot of Faslodex before surgery and then another 2 weeks later. I still haven’t started back on Ibrance now 100. I ask onc when to start and they say ask surgeon. I’m getting a little nervous.
ARE you on 100 ml
I am thrilled to see Faslodex and Ibrance is working for you. My onc is very casual and I get very little information. Except I have multiple Mets on liver, lung, bone. Here it is Late Sept and I have only had 14 pills of Ibrance.
I don’t seem to have side effects from Faslodex. If I didn’t have all of you for information I would be lost and super depressed
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I have a quick question…. I e had two rounds of blood work done in the last month. My MO ordered the CA 15.3 and 27.29 tests. I’ve seen some talk about high tumor markers on but mine seem to be astronomically high. My CA 15.3 was 1200+ and 1300+ and my CA 27.29 was 5500+ and 6600+. This seems excessive and it kind of freaks me out. Has anyone else had markers this high?
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Katyblu,
I have been reading your posts and certainly understand your fears and concerns. This is not something that is easy to deal with.
My doc does not use CA 15.3. She uses CEA and CA 27-29. I understand your concerns about your tumor markers. two months ago my CA 27.29 was at 8900. After a month on xeloda and neratinib, my CA 27.29 dropped into the 2000 -- still ridiculously high, but a good drop. I have met others on BCO who have had higher numbers than mine, so perhaps they will respond.
My doc does not demonstrate alarm with higher TM numbers -- it just cues her in to do scans to see if there is something up. Try not to fixate on the actual numbers, and try to focus on the treatments. Trust that your doctor is looking at all of your numbers, and keeping an eye on them.
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One other thing I'll mention about tumor markers that I've heard is that the markers include dead and living cancer cells, and they usually go higher on a new treatment before they come down. Give it a few months, and if the numbers are declining, that will be a good sign.
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Hi everyone having a hard time just wondering if other people started out with progression after beginning of treatment
Went for appointment onc checking me after blueberry wipeout said some pain was probly from fall maybe fractures etc. I am fine with that but she said I shouldn’t Have had new pain before my fall she said could be progression
I was so hopeful and strong now I am feeling defeated already. I have had 3 treatments of faslodex and was supposed to start ribociclib in 3 weeks
Now not sure what’s going on or if I am going to have to start another treatment already hoping with all my heart my body starts responding it would make this so much easier It’s scaring the heck outta me
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BevJen, it’s good to hear that someone else has had numbers that high. And that your doc is not concerned. Mine doesn’t seem to be either so I guess I should take a cue from him. I’ve read that TMs are just small pet of the puzzle and not a real diagnostic tool. I just wanted some reassurance. So thanks!
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Positive, have you gotten that second opinion? I wonder if you might be better off with a different onc, someone is more communicative?
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Beth, I'm not sure I understand. Did you have scans before your fall, and did they show anything? I also have ILC, so I know scans don't show ILC all the time. PET and CT have not worked for me. The only thing that works are the MRIs for my spine and bone marrow mets. I had a missed diagnosis for six years with no meds at all. The cancer was extensive throughout my bone and bone marrow. How I found out was it then spread to my stomach. Once there and we finally knew what it was, I went on Ibrance and Letrozole. I'm just switching to Faslodex and Xeloda after two years and two months. My mets to bone and bone marrow are from skull to femurs and hips. It's been eight years. Also, my mets are still extensive. I've never been NED. I hope that gives you hope that you will still be okay for a long time to come. This is so new for you with the mets. You have every right to be scared right now.
I hope your doc still lets you start the new med and give it a try.
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thanks KBL you helped me feel much more hopeful
Yes I was scanned and it showed Mets skull ribs spine pelvis femurs
I had pain in a few met spots upper ribs lower on both sides and spine but after some faslodex treatments all pains started to fade ( I was so happy) and then a new pain started and another old pain returned. Then I fell and a few more pain spots came back Doctor said a few pains may be from fall and should heal but I shouldn’t have had new and returning pain that happened before fall that’s what made her think I had possible progression she said we will know better in few weeks.
I read about ILC not showing things my beginning cancer had a 9 cm tumor and it did not show-on no mammo or ultrasound for 5-7 years of being checked for pain so by the time it got found you could visibly see the tumor popping out of breast still never showed ended up with 17 positive nodes cause it had time to grow
The fact you are here still gives me great hope thank so muchfor sharing I was worried about things going wrong so soon
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Regarding Tumor Markers, I asked my onc about them, and he said that he doesn't really look at them. He said that he goes by the scans and compares them to previous scans to see how I am doing. After that conversation, he did order the CA-15, and it showed low TMs. I certainly have cancer so that just shows that TMs are sometimes not a good indicator.
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Beth, I’m glad I could help. I’m so sorry your tumor was missed until it was so big and spread. They have never found the cancer in my breasts. I was diagnosed Stage IV from the start. I hope the pains are something benign. Please keep me posted. I do hope you can try the ribociclib.
GoKale, this is very true. My tumor markers have worked for me, but I do think it’s wise to know they may not be of any help to some.
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JoynerL yes I got the second opinion from UCLA he knew my onc he was more serious
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Best wishes for healing everyone with recent falls, med changes, new diagnoses. Thinking of you.
Meanwhile, very frustrated with CBC results I finally received by portal from Monday bloodwork. Once again ANC has plunged below .50 (or 500, depending on how you measure it), into Grade 4 severe neutropenia territory. This is around halfway into 2nd cycle of top dose (150mg) of Verzzenio. And nothing so far from Onc, who is probably busy attending to everything that built up during his 2 week vacation. Put a call in this morning because I'm not sure I should keep taking highest dose of Verzenio and just push ANC down further (it dropped from .85 to .47 in 3 weeks). I'm seeing him Monday, but the idea was to check as soon as he got back to see where it was. On top of this, tomorrow we're supposed to drive 3.5 hours south to stay in a cool-looking Airbnb and do some hiking in a national forest while my youngest dd is briefly here. I'm not sure how concerned I should be, have been as low as .40 and never had febrile issues, on the other hand, I know it's easy to get an infection and not be aware when at Grade 4. So, today I just stopped taking the Verzenio until I hear from him. Kind of hate to have to cancel the trip, which will just be with family I live with anyway, and outdoors on trails, we'll be taking all of our meals with us to eat at the house. However, we would be 45 minutes to over two hours from any hospital should I need it. Any suggestions?
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moth, sorry to hear of your broken arm. Are you in any pain? I hope you will treat yourself with extra special tender care while the break heals. The summer of 2018 I had surgery to get a pin inserted into the fractured 5th metatarsal bone in my left foot and the following summer had an almost identical break in the right foot so surgery for that one, too. Quite inconvenient especially during summer and prepandemic so I had three messed up summers in a row. The breaks and days following surgery were painful. Then felt like Frankenstein walking in an air boot for two months each time. These days I am more intentional about foot placement, not running my feet into stuff or running over my foot with something like the wheels of the computer chair.
Prairie, I am one to push the envelope a bit so I’d opt to go on the trip. You might not be able to do all of the hiking but worth it to see your dd and just to get away. Verzenio was a bitch for me. Sorry, no other way to put it. Would you be comfortable stopping the Verzenio until after the trip? Hope you can get ahold of the doctor to get his advice.
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I’m so sorry, Prairiesea. I think I would still go, but it’s all about your comfort level. Since you’re only going to be around the ones you already are around, I would feel okay with that if it were me. I hope your doc calls and you both can figure out where to go from here. This has been such a bear for you. Hugs.
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Thanks Divine and KBL. I'm also inclined to go. Got cryptic message from Onc, to effect that we've discussed that ANC will go down because I have a lot of bone/bone marrow involvement with cancer, wants to stay course on current dose and I should stay "distant from everyone else". If traveling may have to hold or adjust dose. I think I'll need to call nurse tomorrow and ask for clarification....i.e. should I hold dose now? I'm wondering how much he expects me to stay "distant from everyone else". No bbqs w/ vaccinated friends? Sleep separately from dh? What about lecture course of over 100 I'm supposed to teach in person starting in January.....may have to talk about moving that online as I have current courses. I did get what he said last month but didn't quite think he'd hold the course on the highest dose if I moved into Grade 4 neutropenia as was the case with every dose of Ibrance (and if so, why not go back to Ibrance, which at least would give me a one week break every month, and no diarrhea). I was hoping that Verzenio's supposed advantage over ibrance on neutropenia would hold for me. I'm torn....really want to beat back the cancer, but also live life in the present. Sigh. I guess that's part of the never ending MBC balance for all of us.
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prairiesea - How frustrating (to put it mildly)! I’m sure your doctor is busy but geez. This is your LIFE and it would be nice to be able to live it, to enjoy it. I get so frustrated when a doctor would rather spend 3 minutes sending a cryptic message when he could have picked up the phone and made a 5 minute call. “If traveling may have to hold or adjust dose”. WELL…which is it? I've recently been on the receiving end of this same type of not thought through, half baked response so I feel your pain. I hope the nurse can get you further clarification tomorrow. 🤞🏻I had to fire my MO. As it is I gave her too many chances.
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Prairiesea,
Time with family and nature is real medicine! Hugs are also good medicine.
Maybe a mask and dosing on every other day would be a compromise. Divine and KBL have great advice!
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Moth…I’m so sorry about your arm! Hope you get some helpful answers soon. Who knew we’d have to navigate “relationships” with our oncologists.
Another ILC, bone Mets only, stage IV de novo here. Six years so far. Had scans this week and nuclear bone scan showed some uptake at the junction of sternum and clavicle. Still just in bones, but as others said, with ILC, you never know. It will be an interesting visit with my Onc on Monday. I’m trying to not get worked up in the meantime.
Hang in there everyone
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Prairiesea, when you come back from your trip, you may want to get a second opinion to see what another set of eyes has to say. I've had multiple second opinions when I felt I needed them. My doc has never had a problem with that, so yours shouldn't either.
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Moth, I'm so sorry to hear about your arm! Falling is one of my fears, especially given that I have a hairline fracture in the right hip that my doc's are watching. I had two pair of Dansko clogs that I love but recently had to get rid of because the risk of turning an ankle and falling was too high. That and my knees just don't take a hard soled shoe the way they used too. Hope you heal quickly and aren't in too much pain. I second Prariesea, the struggle is real trying to balance MBC and still live life as fully as possible. I think that's a frustration we can all identify with.
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Prairiesea, can you reduce dosage on Verzenio? Maybe that’s an option if you continue with this cycle.
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Thanks RK, Iwrite, emac and KBL....really appreciate the understanding and the support for the struggle of living life with MBC. After clarifying what I'm supposed to do this weekend, I will come to my appointment Monday with a long list of questions about the logic of the current treatment plan. Am still awaiting results on the TM tests also done Monday, I suppose if those show a steep decline the strategy may make sense. But I'll need a practical definition for "stay distant from everyone else." Second opinion is possibly a good idea, though last conversation with my second opinion doctor was basically to listen to my oncologist....not sure how that's a second opinion. May need to seek out a third.
Like your epigram, Iwrite....definitely looking for that door between the trees. And sorry, RK, you are also struggling half baked oncological wisdom. Not worth the time required to seek it out.....
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Just saw your question NCYogi. Yes, you can reduce dosage to 100mg, and below that 50mg on Verzenio. I think one of the Onc's hopes was to have me on something that I could take a high dose of because of the extensiveness of my bone mets. He'd hoped Verezenio would be it, and wouldn't have the impact on ANC that Ibrance did. But now that that's not the case he's changed his tune and says because of the extent of the bone involvement of my disease I'm always going to have some degree of neutropenia, and he wants to stick with the high dose. I'm not sure I want to make the QOL tradeoff this logic will involve. I just wish this had been his perspective on Ibrance, which seems to have a slightly better PFS rate than Verzenio (though not all the data are in on the Verzenio/letrozole trial) not to mention Ibrance has fewer undesirable SEs.
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Dear prairiesea, I'm thinking you know the answer to your question about whether to give your all to beating back the cancer or living life in the present.
All we have is the present and if you're taking votes, I'll vote for leaving the meds in the bottle at home and grabbing your loved ones by the hand for a fun and memorable vacation. Eat, laugh, walk, hug, sleep close.....all the things!
Perhaps you could pray about it tonight and go with what you have peace about in the morning?
Today we had a disgruntled employee shoot up a nearby grocery store. So far one woman has died and a dozen more are injured, some critically. I have a feeling, given the option to go back in time, they would all have taken every opportunity to find joy. All that to say and forgive my repetition, I hope you do exactly that!
Love from PatGMc
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