Bone Mets Thread
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20130502 ~ No experience w/Entinostat, but from the articles I found, it looks like it might possibly still be in Phase 3 trials (not sure). Has it been RX'd for you? It sounds really promising!
http://www.syndax.com/dev-entinostat.aspx
http://www.onclive.com/web-exclusives/Breakthrough...
I also wanted to share what happened to me when I saw my onc yesterday because I think there's a valuable lesson in it about scans, along the lines of what MameMe suggested above. Last week, when my onc was away, her PA had called about my 7/25 CT and used phrases like "boney disease worse," "new area," and "more confluent" -- all extremely scary. But miraculously, my onc had a totally different take on things! She explained that two different radiologists had read my scan. The one who did the chest area said everything's stable. The one who did the abdomen/pelvis is the one who made the comments above, and she thinks his report was "over interpretation." She explained that on a CT it's impossible to distinguish confluence from healing, and she attributes what he saw to the latter, as well as some still-inflamed areas from my hip surgery -- both of which (healing and inflammation) will light up on a scan. She said the radiologist was being overly aggressive and it's illogical that one area would be that active when the other is stable, especially since my pain has gone from really needing 2 to 3 narcotic meds a day + patches to not needing pain meds (although I still have some aches), and my CA27-29 was down this time to 96 (previously 119; high of 155). So the bottom line is, she's not concerned, she thinks the Anastrazole is still working, and she just wants to repeat the scan in October. An IMMENSE relief, and an important lesson re. scans.
So that brings up a question... How often do you all get scanned, especially if your disease is limited to your bones and is stable? Deanna
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Deanna, woohoo! on your results being good after all! I bet you breathed a huge sigh of relief!
I don't get scanned unless I am having symptoms that, according to my docs are in need of scanning. They both seem to understand that I don't panic and more often than not tell them I don't want a scan, that I was just reporting so if necessary it, whatever it is, can be followed.
I know the docs here are little different than they are over there but a lot of it comes down to really knowing your body and understanding it so you can report changes.
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Deanna, I'm so glad you got good news!
Leah
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Deanna, so glad you got some good news!
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Yay, Deanna!! So glad you got GOOD NEWS!!!0 -
Deanna, so great to hear your news! And fewer meds needed is always a good thing. Dee
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Deanna - YAY - Great news. I am so happy for you.....that feeling of relief is wonderful. My cancer is MOSTLY in my bones and stable ( I have two tiny spots in my liver which I try hard to forget about) and I get scanned every six months. Last scan was in May (stable) and next is in November, unless I start feeling bad in the meantime.
xoxo
Andi
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Deanna,
Wonderful news! You must feel greatly relieved. As for scans, I now have a PET every Dix months! and unless I have symptoms that's enough for me!
Caryn
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Thanks, ladies. I just can't help but feel that frequent scanning cannot be helpful and may even serve to activate dormant cells. At least, that's what I picture them doing -- getting really riled up when they're zapped just a little bit. But I guess I'll see how I'm feeling in October and talk to my onc about it then.
And as elated as I am about the unexpected news I got yesterday, it's still overshadowed with the realization that others here aren't as fortunate, and that next time it may not be this way for me either. This disease really messes with our minds, as well as our bodies! We just have to believe there are life-extending breakthroughs -- if not a complete cure, which has always seemed a bit far-fetched to me in view of the diversity of our disease -- on the near horizon for all of us!
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Deanna, great news and I totally agree with what you are saying. My scans are every 3 months, PET, CT and Nuclear Bone. I hate having all of that done to my body. And I feel GREAT! (at this time) No pain what so ever, but dreading hearing that things are spreading around and I try not to think of that, but it's hard, for sure!
Chrissy, I didn't have any symptoms, none at all. So I am grateful the mets were found when they were.Lori
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I get scanned every 6 months unless something is up. When they find new bone mets, I'm back on every 3 months until I'm stable. My blood work does not show progression, just the scans & pain in my back.
Terri
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Deanna, great news, I'm so happy for you! I have ct scan every 3 months and mri and nuclear bone scan every 6 months.
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Great news, Deanna. And I agree with what you said about others. I feel guilty when I have a pity party or whine because I know how good I really have things.
I've heard other oncologists say what yours did about it being hard to distinguish between healing bone and progression and that it takes looking at all the scans as a set and a true expert to tell the difference.
I was scanned in Feb; don't know if I will be this time (I see the MO next week). I'm guessing he will because I'm having some new odd pain(s) and the fatigue has been really bad lately. Last time, it was just side effects and arthritis, so I'm trying to stay positive!
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Deanna--
So glad to hear your good news- you were overdue for some!
At this point, my MO orders scans when symptoms or blood work indicate something going on. She said she doesn't want to overscan and increase the radiation exposure if she can avoid it. Since I was diagnosed with mets in 2/2013, I've had PETS in 2/13, 7/13 and 11/13 (each one showed a new active spot, but no activity in the area that had been active on the previous scan), and a CT in 7/14. The CT was ordered when I had intermittent pain in the same area over a period of a few months. It was never the constant pain lasting for 2 weeks that seems to be the benchmark for investigation, but my mets have been a little weird from the beginning. I feel like a walking, talking game of whack a mole! Typical for ILC, I guess.
Hoping you enjoy a long ride with no pain!
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Gee, since June 13th, I'm constantly scanned. I have had the PET scan, about 4 or 5 MRI'S, and another one tomorrow. Several Ct scans. About four scans for radiation...lung doctor, MRI, and other scans for whatever. I have no idea what all the results are except to say the scans affirm wide spread cancer. I don't think they are protecting me from radiation...apparently not
It has crossed my mind if the PET scan could be a false positive, but the other scans confirm wide spread cancer, and of late progression.
Always good to hear that you ladies are handling treatment, and are doing ok.
I start radiation next Wednesday. Today I was tattoo from head to lower body.
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Hindsfeet, Yeah, I have a few sites of mets and a wonky little met behind my left eye, which is the target of chemo now, The scans I had at workup in April were extensive, but the one I had in June was just the chest area. I will have something in Sept, and I have monthly scans of the retina by the retina specialist on the team. I hope you have a helpful set of results with a treatment plan that can help avoid pain and distress. The whole thing stinks, but sometimes small things go fairly well, within the big picture.
Don't hesitate to share.
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Hi Harvey, Our stories are so close to the same it is unbelievable. I too have mets to the spine - Lost use of my legs because 2 cancerous vertebrae were pushing on my spine. I had an extensive surgery where 2 rods were put in to stabilize my spine and a rib which had a big tumour was removed. Now the mets has moved to lower spine and had radiation in July for that. They have put me on Faslodex now to starve out the cancer. Any one have Faslodex side effects??
Don't know the answer to your question about the pain in T4-T7. I have pain in my back a lot, plus stiffness. I think the rods draw in the cold and it is almost like arthritis.
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Deanna,
I have not been prescribed entinostat but am researching trials as my markers rose last month and if they do again I expect to have to change treatment.....
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Hi All! My back pain is progressively getting worse. It just hurts, all the time. Like back labor, that kind of owwwww. It's hard to keep positive when pain is my new buddy and shadow, though I try. I have RX strength ibuprofen to mask the pain, but I don't want to do that. I want it to get better (dreaming). Has anyone had any luck with massage? Acupuncture? Physical therapy? Certain exercises? Ultra sound? Thanks....
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Skylotus, I wonder if the rads to your hip are causing the pain - I'd ask RO. Also, in regards to massage, if you have mets to your spine (like I do), I was advised NO massage as it could potentially fx a vertebra. As far as acupuncture goes, some report it helps, others say not. I've heard ultrasound can potentially stimulate cancer cells. PT, it's helped me, but I'd be sure to get a Physical Therapist that works with cancer patients. Again, you don't want anything done to you to make matters worse. I would defin. let my MO know if you are having increased pain - has many implications in the spine. One of our sisters on these boards waited until she couldn't stand up straight, ended up have a fx vertebra she had no idea she had. Not to scare you, but the spine is nothing to mess with, in my opinion. It scares me to death to have the extensive mets I have there. Also, have you tried heat or cold on the area?
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wow!! Syrmom, thank you!! Lots of good info there for me and anyone else in the same boat! Thank you!!
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Skylotus, I want to second SyrMom's suggestion for heat. If you don't have one, pick up an oversized heating pad. My DH got me one (@ Walgreen's, I think), and I swear it was my best friend when my bone mets were first dx'd.
And I also limped along with RX dose Ibuprofen for a few months -- even added Lidocaine patches. Both helped, but never totally relieved my pain. Of course, I was reluctant to go to a narcotic, especially since a couple I'd tried made me sick. But then I found (when I was hospitalized) acetaminophen+codeine #3, and it was a Godsend -- totally helped my back pain without making me spacey or nauseous.
I'm so sorry you're in the pain you are, but hopefully tweeking your pain med can help, at least until whatever tx you're doing kicks in more. (((Hugs))) Deanna
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My tumor markers are down but the last bone scan states progression of the disease. I am confused. I feel pretty good. Any thoughts anyone?0 -
Yes! See my post a few days back about what could be a similar situation. What my oncologist told me -- after her PA called and scared me to death with talk of worsening bone mets -- is that a scan (at least a CT scan, which is what I had) cannot distinguish between mets and healing. It basically shows inflammation, and since I am feeling good and my CA27-29 is also down, she called it "over interpretation" by the radiologist, and she attributed what looks like progression (confluence or filling in on my scan) to healing. Hope this is what you're experiencing too! Deanna
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donutswife,
Tumor markers are also not always accurate and many doctors do not even use them. Have they been an accurate indicator in the past for you?
Caryn
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Skylotus - I agree with the heating pad suggestion too.... I used constantly before diagnosed and I still use once or twice a month.... the heat totally relaxes all of the muscles in the back. Also - I have mentioned this before and I know I sound like a heroine addict, but the best pain medication in the world for me was methodone. I was on oxycontin and oxycodone and vicodin and just about every pain killer in the world, all which made me sick and constipated and didn't totally help. Finally an oncologist at CTCA suggested methodone, a very low dose, and I was pain free and side effect free within 24 hours. It was amazing.
Back pain is the worst.....I hope you can find something to help soon.
Andi
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donuts wife, my dr doesn't use blood work for this reason, he said it's not accurate. He only uses pet scan every six months, that's it. Hugs to you, glad u r feeling good though!
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Andi, that is fantastic that methodone works for you! I agree with the heating pad suggestion. I used to sleep with one every night.
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Thanks to all for the heating pad suggestion. Skylotus - In the immortal words of Bill Clinton- I feel your pain. Literally.
We're moving house and the thing that keeps slowing me down is my back. I unpack a box, and then sit for about 10 minutes to get my back not to be screaming in agony. It's mostly lower back pain. I see the oncologist on Thursday so we shall see what we shall see. I'm guessing he's going to send me for a scan again; I hurt all over, but the back pain is the worst.I've tried ibupropen, Alieve (prescription strength) and am now using Tramadol, which is a synthetic opiate at night. Nothing is helping, and the tramadol just makes me queasy. So I'll talk to my MO about that as well.
Hugs to all,
Terre
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I am bone mets only and currently have only 4 tumors so I know it could be much worse. But I am so tired of thinking about cancer! I have been on disability for 2.5 yrs now and even though I have this "pass" from work, have a million good things in my life I can't stop thinking about cancer! I'm only 43 I should be at work, I should be having fun, at my sexual prime! But nope, I can't remember enjoying sex or enjoying being home, or anything! I hate cancer! It has taken so much from me! Oh I can put a positive spin on anything and try to make the best of it, but my mind keeps going back to "poor me". But I feel guilty for even complaining when so many have a lot more cancer than me. I hope you understand where I am coming from because no one else would.
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