Bone Mets Thread
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BevJen, glad to hear there is some progress although it seems awfully slow. Hopefully they will have answers and be able to relieve your pain soon.
KBL, good to hear you will consider options. I get it. I continue to do more than I probably should out a mix of stubbornness and a desire to just live my life the way I always have. One of the advantages of Tramacet is it doesn’t make me sleepy. At one point they prescribed Tylenol 3. It was ridiculous. I couldn’t stay awake so, um, not that helpful. I know a lot of people have issues with nausea with Tramadol. Never had any issue with Tramacet.
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Sadiesservant, perfect. I will definitely ask for this when I need a pain med. Stubbornness is a great word. My husband is not thrilled with my stubbornness at times. It's so hard not to pick up my grandson, but he's almost 30 pounds now and really doesn't need to be picked up.
The other thing with pain meds is the constipation issue. Have you had any issues with that? I already have an issue with constipation, so I don’t want to make it worse.0 -
I don’t take stronger pain meds most of the time. However, something like Tramadol can be used to help knock down more intense pain and then before it ramps back up again, I take Tylenol to try to help keep the pain level down. Once pain reaches a certain level, Tylenol isn’t effective. I’ve not had to take pain meds for mbc, but had foot surgery twice and increased pain for several days after surgery. I took Tamadol maybe 3 times, even half a Tramadol, and then was able to switch to Tylenol. And you can take a pain med before you go to sleep so it doesn’t interfere as much with an active daytime. Sometimes the combo of pain med plus a good night’s sleep helps bring the pain level down to a more manageable level.
Pain meds are definitely constipating, and also they give me headaches. When taking them, I like to eat things like pasta salad with all kinds of vegetables like broccoli, cucumbers, tomatoes, and onions, and eat apples and bananas to keep bulk in the bowels. Dh needed pain meds after appendix’s removal surgery and was told to use Miralax for constipation. That was effective for him but directions say it shouldn’t be used longer than a week.
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Bev...I did the dilaudid...didn't help me only the IV Dilaudid did ...the liquid, pills and even suppositories destroyed my stomach I hope you do well on it... please keep us posted about the appt you have.
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Re tramadol and Dilaudid-- the doc told me in advance that I should first take anti-nausea med( I take zofran) ; eat something; then take the pain killer. She also said the pain killer wouldn't kick in for at least 20 minutes, so remember that. And yes, there is constipation.
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DivineMrsM- You bring up a good point--- not using Miralax for more than a week. I have had a couple of docs, one was my PCP, that said to use Miralax daily for my chronic constipation (from the Letrozole and Ibrance). I mentioned it says not to use over a week and both docs said "Oh it is ok to use daily." ??? Then why does the instructions say not for over a week? I do not use it. Tried it and not much help. I use vegetables, fiber, and prune juice.
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the reason the miralax bottle says not to use it for more than a week or two is bc ppl can have an underlying medical condistion and not know it and just keep taking that. My GI doctor and my MO both said it is fine fir everyday use and I know women on fb that also use it everyday.
Bev..the Zofran wasn't strong enough for me with the daudud and I puked..but the compizine worked great for me.
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Good point, Nicole. Prune juice is very effective for me. 8oz of that and I better be close to a bathroom!!! But causes cramping and gas too--yucky feeling insides.
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I do take the store brand of Miralax most days, and it works great for me. It’s been the only thing that helps. If I have a good day with a movement or two, I skip it that day.
Great advice. I have my appointment on Monday and will ask for a written script to have on hand if I think I’ve had enough.
My doc’s office called today. Still no openings for MRI, so just in case they can’t get one sooner, I made an appointment for the 20th.
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Hi KBL. No, I have had no issues with constipation from the Tramacet but then, I don't take a lot of it. I know my MO indicated the Tylenol 3 could cause constipation when he prescribed it but it never got to that as I just couldn't stand feeling so sleepy all the time.
As to Zofran, that seriously constipates me. When I went through adjuvant treatment in 2001 I had to take Zofran for a couple of days with each cycle. The first cycle I was sooo constipated that I ended up with thrombosed hemorrhoids. It was horrific - serious white knuckle affair every time I had to go. After that I created this bizarre regimen with each cycle which included eating prunes, taking laculose syrup (yuch) and drinking litres of water. I was still mildly constipated but it was better. I swore that Zofran could be used as a weapon of mass destruction! Constipate the enemy to death!
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well all the way to the hospital fasting since last night fir MRI of C Spine and T spine with sedation only to find out the order and authorization was wrong it said only c spine I'm furious right now. The anesthesiologist recommended waiting to do all together so I do not have anesthesia 2 times...I am so mad right now. That could literally take weeks ...weeks to get that scheduled bc its a huge time slot
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Sadiesservant, that’s awesome no constipation with the tramacet. I hope it won’t cause an issue for me if I get it. I don’t take Zofran unless absolutely necessary. The nausea has to be pretty bad. I haven’t had an issue with that. Your “constipate the enemy to death” made me giggle. I know it’s not a funny matter, but that was funny.
The muscle relaxer is taking the edge off but not taking the pain away. I woke up this morning thinking it was better, but by noon the pain was back. They’re still trying to get me in somewhere for an MRI but no luck. I’ve made my own MRI appointment for the 20th just in case.
Nicole, I’m sorry for your cancellation. I totally get it. I was in the outfit ready to go in for an abdominal MRI, even paid for it myself. My doctor and radiologist didn’t think it was necessary. So frustrating. I also know how hard it is to get a quick appointment. I hope because the doc made the mistake that they push to get you in stat.
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KBL. I'm so sorry to hear that the pains are getting worse, really wish you could get some clarity on the cause and a solution. At least they are moving on it but the wait is so frustrating. I had a long heart to heart with a colleague/friend I recently told about my diagnosis, and he told me once during his wife's misdiagnosed illness they went to a town 45 minutes from here where our clinic has another clinic so she get an MRI immediately. So frustrating. With you on the Tramadol issue....still resisting myself despite the pleas of multiple doctors, I don't quite get what they don't understand about my thinking "I can deal with the pain right now, I can't deal with messing with my cognition." On the other hand, I think it's true what Sadiesservant and Divine say--it can get messy if the pain gets too far ahead of the pain meds. This happened to my mother when I was caring for her....severely aggravating her high blood pressure.
Sadiesservant, thanks for the heads up about the zofran and constipation. I will be a little more careful....have been taking it to deal with upset stomach from radiation (only 2 more days, thankfully) while also starting on Letrozole. They're piling on the treatments now....just got a call that Ibrance presecription has come through, and that will be arriving, and have a Zometa infusion next week. So it begins, praying it works.
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Hi All, to be fair, it may be dosage related. All I know is I will be reluctant to repeat that!
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prairiesea, I will be coming off these pills as well. During the day yesterday I just was so blah and lazy. I’m going to just take two today. I really want to know if I get dizzy whether it’s the med or my issues. I will definitely do something to control the pain when it is time.
I’m so glad your Ibrance is coming.
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Just curious about something, say you had bone mets long term and they were controlled by what every regime you were on one of the bocilbs and a hormone blocker plus a bone strengthener, does actually haveing a bone met in and of its self cause any issue? I am a bit amazed that after only two weeks on treatment my hip pain has gone I won't be having scans for 3 months so not sure want is happening.
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sunnidays, I’m not sure, but none of my pain has gone away since being on treatment. I have widespread mets, though. That could make a difference.
I got an thoracic MRI set today finally. I’m not sure if it will show the issue. Can anyone tell me if their thoracic MRI mentions the ribs. That’s where the pain is, left rib, although it could be referring.
My daughter has her massage license and is a damn good therapist at that. That’s not her full-time job. I know she’s busy with her life, but I said something the other day about possibly getting a massage. She said if I got cleared by doc, she would give me one. I didn’t want to ask her. Lol. I hope he says yes once we find out what’s going on. I’m really tight.
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KBL, best wishes for good mri results, your MO would include ribs and thoracic either mentioned source of pain (ribs) in referral.
BevJen, that’s great your case taking care of by group of specialists.
Pain sucks, I hate being in pain. This new pain started suddenly then reduced, some days let me do daily activities like walking etc some days the level is high. tramadol was proscribed for me too. My mri rescheduled for 17. it is sad I requested pelvic mri as well, because source of pain is around sacroiliac joint, the nurse said we cannot order mri of your pelvic based on you are saying you have pain! Great...
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So I haven't started Ibrance/Faslodex this past Monday since my doctor is looking into new treatment. But I did get my Xgeva injection. When I was on Ibrance 125mg I was getting mouth sores/mucositis/geographical tongue so he brought the Ibrance dosage to 100mg. That seemed to help some although I still would get a few days of this reaction. Well since the Xgeva injection on Monday the symptoms are so much worse! Could it have been from the Xgeva all along or is it possible it's an Ibrance withdrawal reaction? I'll ask my doctor when I speak to him but just wanted your opinions.
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Snow-drop, thank you. I sure hope he lists the ribs. It’s kind of dumb if they don’t image where it’s hurting. I hope yours gets straightened out.
JACK5IE, I don’t know if it could be from withdrawal. I have found when on Ibrance, if I eat fruit or have a smoothie, I get the canker sores. I hadn’t had any for a long time, and then had some fruit and a few fruit smoothies. Bam, canker sores.
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Cross Posting...
Saw oncologist today... We will start with Afinitor and Exe. I have a PET scheduled now for the 19th April. We both know there is progression in spine:
1. Due to my consistant and new pain
2. My ALK PHOS was through the roof... 358
. I am so SO SO CONCERNED ABOUT THIS She said usually when ALK is elevated it is either from medications or progression. usually bone or in my case bone.....
My bilirubin which most of you know is usually my issue was 0.7 !!!!!! Doesn't get any better than that...that tell us liver is looking good. AST 45 ALT 51.
We will start the Afinitor at the LOWEST dose 2.5mg (which probably not even touch my cancer) for a week or 2..then if I am good titrate up to 2.5mg twice a day so 5mg.... then if that is good after 2 weeks go to 7.5mg a day and stop there.
We talked about going back to Eribulin right now...bc my bone mets are getting out of control...but ultimately decided to go with the Afinitor but scan at 2 months... I did ask if she thought the Eribulin would work better...she said probably yes...but we can give this a try and if it doesn't work we will go right back to Eribulin and or another chemo.
I will take the first pill at dinner tonight. Praying I do ok...and it subdues the cancer.
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Best wishes to you Nicole. I will keep you in my thoughts and prayers.
KBL...thanks.
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Thanks Jackie...right back at ya!
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Nicole, yay on the liver, boo on the bones. I hope the scan results aren't as bad as you're fearing & the new protocol is smooth & easy for you. I like the idea of titrating up.
JACK5IE, I hope your mouth sore settle down. I've only had 2 xgeva injections and no se's but everyone is so different.
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Snow-drop - do you have a CT coming up? That should pick up anything happening in the SI joint in the imaging. It won't be as clear as an MRI, but it will at least flag the issue if there is one.
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Hi to all. I'm not gonna comment on everything that's been going on, because my brain is truly fried on dilaudid. This one cuts down on the pain, but it is doing a number on my cognition. I'm happy for the pain relief, but I can't exist on this for long.
The Rheumatologist who I saw at Hopkins yesterday and who had published a lot on rheumatology and immunotherapy a lot said she doesn't believe this is caused by the immunotherapy I'm on. She said I have a lot of degenerative disease in my back, my bones are a mess from that and also from bone mets, and she said to rely on the pain meds for now and the spine board for a solution.
The spine board sent a "solution" to my MO. They suggest that I have a vertebroplasty in the area of L 3-4. This surprised me bc I didn't read about any fractures or tumors in that area. But it correlates with where the most pain is, and could perhaps prop up the area of my thoracic spine just above where there are a couple of mild fractures. If that doesn't relieve the pain, they recommend radiation to that same area.
So now just waiting to see how this whole thing progresses. Plus, I'm supposed to have my next Keytruda infusion next week, and I'm worried that my MO might hold it or try to switch me out to a different treatment. I want to continue to try keytruda for a bit == I've been on it for less than 3 months. So we'll see.
Hope everyone is doing okay today.
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Jackie mouth sores are the worst and mine lasted a month after stopping Ibrance...
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BevJen...you're on my prayer list too.
Nicole...thanks for the info. That's good to know.
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those with bone mets ehat is your Alk Phos number usually at?
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BevJen, I hope what they do for you helps. I have been on this muscle relaxer a few days. It's very low dose, and I'm wonky on it. I'm getting back off. It's ridiculous that the crap that helps causes other issues.
NicoleRod, believe it or not, I have extensive bone mets, and my Alk phos is below normal at 33. I think mine is because of the mets in my stomach and it's due to malnutrition.
Got the results of the T spine MRI already. Don't think that's what's causing the spasms, but here it is. Now I do know it's in my total spine. I wouldn't be surprised if it's in my ribs too. The tech said the way to see is a PET. Nope, PET doesn't show anything. Here are the results.
HISTORY BREAST CANCER WITH DIFFUSE MARROW SIGNAL ABNORMALITY CONCERNING FOR DIFFUSE OSSEOUS METASTATIC DISEASE, WITH SIMILAR FINDINGS INVOLVING THE LUMBAR SPINE AND PELVIS ON EXAMS FROM 1/12/2021. NO EVIDENCE OF EXTRAOSSEOUS EXTENSION OF NEOPLASM. NO EVIDENCE OF SIGNIFICANT THORACIC SPINAL STENOSIS OR SIGNAL ABNORMALITY INVOLVING
THE VISUALIZED SPINAL CORD.
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