Bone Mets Thread
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I just got back from my RFA consult...the physician was amazing! I caught him just before he heads to Duke to teach this very procedure. It involves a very precise electrical needle insertion into the tumor of the spine and slowly he heats or freezes it to high ( or low) temperatures and ablates the tissue as much as he can. General anesthesia would be used. He was disappointed to tell me that I am not a candidate. My lumbar tumor has grown too much and is involving the spinal cord. My tumors in T-9 to T-12 are progressing, but have not significantly changed in 3 months. One is narrowing my central spinal canal. I have a screw loose ( ok, my husband loves that) from my spinal surgery that may have to come out. Soooo I can not start any new treatment as my white count has to be as high as possible before surgery. My neurosurgeon sees me in a few weeks to discuss that. If any of you have new or smaller tumors in the spine, look into RFA as a possibility. I didn't know about it until recently and the doctor said he has had good success in reducing the tumors. That tumor has been radiated twice so no more radiation either. I had a little melt down on the trip home. Feel better now.
This is getting too long and I wanted to touch base individually with you so here goes....hope I didn't forget someone.
Myra - we are anxiously awaiting grand baby news.
Annie- Know that we are all with you tomorrow.
Cathy - Beautiful cats. Bet they are a comfort to you.
Dee - Wising yo the best on your treatment. There was a license plate at the NCI center today that said ZAP CANCER...Yes!
Dune- Glad your dizziness is gone.
Terre- Are you having treatment now?
Lynwood- you are nurse right? I am so grateful for my onc nurse. You are pretty special people.
Mscal07- Thanks for the ginger ale tip. I will go get some.
Patty- are you ok?
WHEW....sorry this was so long. Hugs to all....
Linda
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Lindalou, you deserve a giant meltdown if you want. Hugs and hope for great outcomes Myra
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Dune, I love the picture of your baby, so cute!
Cathy, omg you're cats are beautiful and so furry. They look big too, my Chloe is a little peanut, I think her growth has been stunted, she still looks like a kitten and she's almost 5 years old.
Dee, best of luck with rads and hoping they help take your pain away. My humerus, sternum and rib met have been virtually pain free since. It's my L5 that is a bit of a bugger. Maybe just because of the location.
Myra, hoping the baby comes soon. Your story of the coconut oil reminded me of a time when I was in high school. My cousin told me to put baby oil in my hair to make it softer, since I have thick coarse curly hair. So one night before school I did it, tried to dry my hair and it wouldn't dry it was pure grease. I was losing my mind so washed it again, no luck it was still greasy! I tried dish soap, a little better but my hair was still saturated with oil, I almost missed school. I am not kidding you it took a week of washing to get it out! I was quite mad at my cousin but now when we talk about it we laugh our butts off.
Deanna, just curious if you got your results since your post says you started faslodex today? Wishing you great results with your new treatment.
My scanxiety is major today, been on the run trying to distract myself. I guess I can run but I can't hide, not sure I'll sleep tonight.
Hugs to all, Annie
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Lindalou, we were posting at the same time. I'm so sorry you couldn't have the RFA procedure done, I was really hoping it would be an option for you. You're entitled to a meltdown, take all the time you need. I hope they can fix the loose screw and lol about your husband, mine would find that funny too. Not so funny for you though and I hope your able to get the surgery done and have no problem with your white counts. I wish I had a magic wand to take this away from everyone of us.
Thanks to all of you for the well wishes, not sure what I'd do without you all.
Hugs, Annie
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Annie and Linda.. no scan results yet, but I have been in so much pain and my TMs have risen so dramatically that I decided to let them give me the Faslodex without even getting the scan results. I was starting to feel like things were spiraling out of control and that Anastrazole was no longer doing anything at all, and my local onc said he could justify starting Faslodex based my TMs and pain alone. I just emailed my UCLA onc to let her know and to ask if there's anything on either scan to suggest a fracture or something else that could be causing this crazy pain. Of course, I'll share as soon as I find out anything.
Annie, I will be thinking about you tomorrow -- sending you strength and peace for your scan. I know you said you have to get up very early to be there, but remind us what time it is so that we can focus extra hard and extend a virtual hand while you're there.
Lindalou, thanks for the information on RFA. I'm so sorry you're not a candidate for it. That's got to be so disappointing. Hopefully this talented surgeon will be able to figure out something to help when he goes in after the loose screw, which sounds painful in itself.
Does anyone remember Patty saying anything about taking a break???
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Deanna, I'm sorry you're in so much pain and I'm praying that adding faslodex gives you positive results. I'm still praying for you to have positive scan results. My scan is at 9 am tomorrow morning, Eastern Standard time. I have to drink some funny stuff when I get there and also have the contrast through an IV.
I appreciate everyone's good thoughts and prayers, you all mean so much to me.
I'm worried about Patty, I wish she would check in.
Hugs to all, Annie
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hi everyone I'm mostly a lurker but read all the posts and it helps to know there are so many courageous women fighting alongside. Well after Arimedex failed in February and then Aromasin failed in May I found two little tumors one on my right temple and one on my right armpit which turned positive for mbc so my doc put me on Abraxane IV chemo and I'm on the July chemo thread. But in addition a cat scan found a possible tumor on c7 that could pressing on the spinal cord so my doc sent me to radiation but the radiologist ordered an MRI to make sure on the location of the tumor I will be doing that tomorrow. AND ... X-rays show that my right hip bone is gone and I might need surgery but will have to wait to see how the cancer reacts to the chemo.
Please send positive vibes and I will do the same.
Aurora
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auroya, I wondered where you've been! So glad you checked in and gave us an update but I'm so sorry to hear that Aromasin failed you. I think the last time you posted your mother was visiting you and then I lost track, this thread has been moving quickly. Good luck with the MRI tomorrow, I hope it shows things are not pressing on your spinal cord. And oh my goodness about your hip bone, I'm praying that they can do something. I'm sending you all the positive vibes I can muster! How have you been feeling with the Abraxane? Sending you much love and hugs.
Nite nite to some of you and good morning to others, I'm heading to bed. 6:30 a.m will come faster than I want it to. Hugs to all, Annie
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Dammit! I wrote a whole long post and it disappeared. I haven't read back yet, I just got on now.
Started Faslodex today. Got 4 shots, 1 in the arm (Xgeva) and 3 in the butt (2 Faslodex and 1 Lupron). Ibrance will be in a few days as my onc office still has to do the authorization for it from my health insurance company. Have a headache and a sore butt that none of my painkillers are helpoing all that much with.
I took a nice walk through my neighborhood with my HD tonight while neighbors were watching my 2 kids. It was very relaxing. My DH needs to learn how to relax. Every time I hear him complain that he's so tired it really upsets me, and I told him that because at least he gets to have a normal tired and not a cancer tired. I'm still so angry about this metastatic shit.
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OK I read back now.
Linda- yay on a clean scan
Lindalou-so sorry you are not a candidate for RFA. I will mention it to my rad onc as I do have so much pain on my neck and spinal mets but I think 1 or 2 of them are already way too large for that procedure.
Deanna - we started a new regimen on the same day! Sorry about the pain. My onc told me once again I am not using enough pain meds. I use 30 mg oxycontin twice per day and fentanyl spray called subsys- usually 200 mcg every 3-4 hours If I keep up w the Fentanyl I"m usually good with the pain. I just feel funny taking so many narcotics, but F it! I need a good QOL. I really hope your scan doesn't show progression but at least you've already started the new plan of attack. May I ask what pain meds you take?
Hope- I hope you get quick relief with the new adjustment. May I ask what pain meds you take? I know this is a personal question but just trying to compare myself with others in this area. I think I'm using quite a lot.
Annie- good luck w scan, sending positive vibes!
Dune- cute birdie!
Aurora- sorry about the scan results
What do they mean your hip isn't there? I don't completely understand. I hope the Abraxane does the trick for those mets. I will check you out on that thread as that was one of the treatments I was considering but have pushed off for next for now.Off to update my signature and go to bed.
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Big belated Congrats, LindaE! Annie, good scan tomorrow. LindaL, so sorry that you could not use the RFA procedure. I am wondering since the surgeon will open up the area for the loose screw, why not he by the way pulls the tumors out to widen the spinal canal? Deanna and Christina, good luck with your new treatment. Dune, hang in there. Aurora, hope your chemo will kill all the little barsters and allow you to have new hip soon.
Update on my meeting with my onc today. No, I will not do any procedure for the fractured T9, nor radiation, but a thoracic MRI for now. My onc said since I do not have severe pain, radiation should be saved for later. As for the procedures, my onc said the prognoses of the procedures is not very good with tumor patients. The outcome is basically the same between those who had the procedures and those had not. And in my case, my onc seemed not be worried with the T9. He said it will heal on its self because the cancers are not very active in general. The bone will have the time to heal. I said I am afraid my spine is hunched and my ribcage is sitting on my stomach and curved my lungs to give them the partial claps at the bottom. He felt my spine and told me that my spine is strait, no hump anywhere. He said I do not have partial claps at the lower lungs. Many people have that mild atelectasis thing which is not cancer and not caused by cancer. Some breathing exercises will help. As for the confusions in the scan reports, my onc had little direct comments. He only explained that CT imaging is not particularly powerful for bones and bone scan is not especially good at distinguishing bone lesions and healings. He only later quietly said he will speak to the imaging persons about the missing mets in the pelvis and hip area. So, my onc was totally at ease and calm as usual, despite the messy scan information. Obviously my onc belongs to the school of going with symptoms. For them scans report are just another reference. His conclusion of today's meeting, you are OK, see you in 6 weeks. I have little choice but settling with a thoracic MRI next Monday. Oh, I got my bone scan report today. Another surprise. It did not find any lytic and diffuse thing, it said the disease is osteoblastic. The only thing it agrees with the CT reading is a foci activity on my right humeral head. It did compared my current state with a previous one, but not the one diagnosing my mets. They used a ten year old one which is the only thing they have in their file. Of course every thing is "increased" since then. I am not worried.
Any comments and advice, please?
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cjanet, so sorry about the headache. But you know, I've found that sometimes pain meds don't seem to help with headaches, and you really need just good old aspirin or whatever you would normally take for a headache. As far as pain meds, I use acetaminophen+Codeine #3 -- every 6 hrs. or as needed -- plus Lidocaine patches. Both have worked well for me in the past, but this week, not so much. Neither one really helps that intense stabbing pain I suddenly have in my back rib area. Your onc is absolutely right about needing to use enough pain meds, but it's not the dose itself as much as taking it on a regular schedule -- before the pain has a chance to start again. My onc calls waiting until the pain comes back "chasing the pain," and it just doesn't work as well as keeping the level of pain meds high enough in your body to prevent the pain from returning.
xavo, the questions I have are... Why did they simply pull a 10-year old scan to compare? Since you were re-dx'd in 2015, didn't they ask your onc if he you'd had a more recent one? Or when your onc saw what they'd done, didn't he call and ask them to re-do the report using the newer scan? On first read, it sounds like neither the radiologist nor your onc made much of an effort to get the most accurate information. And I'm also a bit surprised he didn't refer you to a rad onc for an opinion on the potential benefit of radiation. I wouldn't think that would be his call as an MO. Are you still working on a second opinion at DF? I have also been concerned about what my DH calls "hunching over," and mine is absolutely the result of being in pain from my bone mets. When I asked about it @ UCLA, they said after we got updated scans and get everything sorted out, they could order PT. That may or may not be the same as the "exercises" you were told you could do, but it's something I hope to do to prevent it from worsening.
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Hi all, Long, long day today. I had rads done to rib & sacrum. The pain was almost immediate on my back at the rib. My skin was not happy, the tech said it wasn't unusual & put some cream on it, but it is still quite painful tonight. I'm very tired & they said I would be for a week or 2, also tummy upset & everything that goes along with that. But if it works on these 2 places as well as it did on my arm then I'm fine with a couple of weeks of not feeling great.
Sorry I haven't read all the posts today, I just wanted to touch base that I'm back. I will catch up tomorrow. Good night all! Dee
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Deanna, before they treated me with radiation for the pain in my pelvic girdle, could not walk standing straight -- or without a cane.That radiation was just what I needed. It gave immediate relief plus kept improving over time. Now, all I know is there is a cane beside my bed that I haven't touched except to dust in a really long time. I don't know if they can do that for you, but I'm putting it out there.
Hydranne, you are funny!!! One of those helpful people we come across told me apples are good for people with cancer, so maybe we should eat a lot of apple pie. I saw a Baltimore Peach cake online and I just wonder if peaches are good for us too. LOL. I, too, am going through a bit of a scared phase. These things do come and go. It's not a comfortable place to be. I like it a lot better when 1) I think of all the new therapies that could come out that could truly make this a chronic manageable disease, 2) I think of new therapies that could come out that could make this a curable disease, 3) I have faith that there is an afterlife, so that dying here is a beginning there and maybe we get a glimpse of the whole and understand why things have been the way they have and that God is holding us, or 4) I don't think about it at all. When I went to my reunion committee meeting last evening and they asked how I was, I actually told them I was having one of my scared days. What the heck! They asked. LOL
Dee, is it normal to have that pain really? I never had any pain from the rads. They gave me tubes of aquafor for redness of skin, which I never had to use. Of course there is a considerable difference between your chest area and my pelvic area. Ask him if the treatment could burn your esophagus and what you can do to limit that. How many treatments do you have to have sweet Dee?
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Linda - I somehow missed your post yesterday.... but YAY is right. So happy for you. What a relief off your shoulders!! I have a scan mid month. Earlier than my MO had said. Not sure if my xrays showed good or bad? Scan a month early. Who knows.. can only wait and see. I did call my oncology nurse yesterday and she spoke to my MO and since it's been 8 days since a bowel movement 9 days today... he is sending the last two Relistor by Fed-Ex. I expect them today. Praying it works this time. If not he wants me to tell my chemo nurse tomorrow to page him. Didn't think he was there Fridays but he must be. His nurse said this drug is in very short supply every where.
Deanna Good luck with your Faslodex injections. Christina too.
Myra - Come on baby!!!
Cathy
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Lindalou, really sorry the RFA isn't going to work for you. Anything else planned right now to address these issues. I have narrowing at many of the vertebrae, so I'm guessing this wouldn't work for me either.
Deanna, sorry you are in pain. Sine you've responded well to AIs in the past, hopefully Faslodex and Ibrance will kick some butt for you. Have you adjusted pain meds lately?
Cjanet, I'm happy to share what I'm doing for pain. Everyone is different, but sometimes it helps to explore options. I am still in an adjustment phase, so this has been changing weekly. I'm still getting a fair amount of breakthrough pain, so I'm guessing I need a bit more adjustment. But, as Deanna said, staying ahead of the pain instead of chasing it is very important. When I miss a dose by a couple of hours for whatever reason, I find myself in tears and it takes most of the following 24 hours to get back on track. Anyway, I take MSContin ER, 1 in the morning and 2 in the evening before bed. I take a Celebrex before bed, to combat inflammation. I also take Percocet about every 6 hours during the day. And I have Dilaudid for breakthrough that I can take every 3-4 hours. I don't take the Dilaudid every day, but on flare days, I'm so thankful I have it. Anyway, I had no idea that it would take a schedule like this to control pain. I've had to start writing it down so I can keep track.
Xtandi is going well. I feel a teeny amount of nausea sometimes when I take it. I think I've discovered that taking it directly after a meal causes more nausea, so now I wait an hour or so before taking it. Been having headaches during the day too, but not too awful. Not sure if it's the Xtandi or the maybe the pain meds.
Ok, thinking about our Miss Patty and wondering where she might be. Does anyone have a contact for her outside BC.org? Might be time to check on her.
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Good Morning Ladies. Deanna and Dee sorry you are in pain. I guess I am on baby pain meds as the Pain Mgmt Doctor called it. Lucky my pain is very manageable on ZohydroER 5 mg. new med without the acetaminophen added. MO didn't like the amount I was getting. Anyone else go to a Pain Mgmt doc? Much more knowledgeable about pain meds. You just get to feel like a druggie every time you need a urine test.
Xavo, kind of confused. Did you go to your second opinion at Dana Farber?
Gals from Maryland, need the name of a good MO from Johns Hopkins since I will be spending a lot more time there once this very slow moving baby comes...LOL. LONGEST 9 months ever......
Have a wonderful day all....Love and Luck to all, Myra.
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Have a bright day everyone!
Deanna and Myra, I will go to Dana Farber in 11 days (8/17). Can't wait! Deanna, I am also not comfortable that my onc was too easy with the messy scan results. I think the lacking communication between the departments and the doctors added more problems. I have only done three bon scans ever since my first round BC treatments done (in PA) in 2003. My then new onc (my current one) ordered a bone scan after seeing me for one year (2005) which was clean. It is the first one. My second bone scan, done in the county hospital this last February, diagnosed my bone mets. My third bone scan was done in my onc's hospital, the same place the first (2005) was done. No one thought of to download the second bone scan films to my onc's hospital file system. All this rendered the recent scans, both CT and bone, useless for providing with imaging evidence of treatment. What a waste of time and resources. I am very unhappy with this. My hope is when I see my Dana Farber doctor, he will let me know what is going on. I was asked to bring with me the CDs by the Dana Farber coordinator. I also hope the Dana Farber doctor has advice for my T9 problem. For graduate compression fracture could have little pain bust is still very damaging. I am worried.
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Good morning all,
Thank you all for your kind words and support on my brain scan.
Lindalou - Oh yes, you are entitled to a melt down. Sorry to hear you're not a candidate and good luck with you neurosurgeon.
Cristina - I take Hydromorph Contin with 2 extra strength Tylenols and Naproxen morning an night. Dilaudid for breakthrough. I no longer hesitate to take breakthrough pain, it seems to nip it in the bud. If I am late taking a dose, my pain reminds me. The pain is so well controlled that I wanted to reduce, to which my Onc said no. She's right, believe me I tried reducing and it took a few days to feel good again. So they are now in my weekly pill box.
Xavo - you need that second opinion. It's true that it's difficult to say what is what on a bone scan and that is why they have to compare with imaging. Even my ortho could not read what kind of lesion I had on bone scan and X-ray and ordered a CT scan. Every time rads were mentioned with my Onc, she referred me to the Rads Onc who had the last word.
Deanna - Hoping your next tx helps with your pain.
Hydrane - good to hear from you! and that you're feeling better.
Dee - I never reacted the same way to rads. Sometimes almost instant relief, sometimes instant pain flare. Rest well.
Dune - good 4 points you have there.
Cathy - Man, I feel for you. You must be so uncomfortable. The longest I kept it warm LOL was 6 days and I was going crazy. Hope you get that sorted out tomorrow.
Myra, Romansma - hi. Annie, thinking of you today. When will you have your results?
I was supposed to have my pamidronate infusion yesterday but was postponed to today. Picture this: my calcium was 2.59 and their normal is up to 2.58. So protocol dictates that nurse sends a fax to Onc because blood was abnormal (really!?) So nurse tries to get in touch with my nurse navigator to get approval because there was no response to the fax. Both nurses got into an argument, I felt like s*t and was told I could not get my tx until they had approval. I'm like what the H? For one tenth of a point...
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Hi Everyone,
Like Hydranne said above, this thread has become a little overwhelming and I hesitate to post as I know I will not be able to remember everyone, so please accept my apology in advance for those I miss. I read this thread most days and think of you all daily.
LindaE, YES! I just "knew" that brain scan would be negative, but what a relief to hear it! Hope yesterday's infusion doesn't have you feeling too bad today. How did the shingles vaccine go? Any ill effects so far?
Deanna, hope you get that pain under control soon. I haven't noticed faslodex really affecting my pain level one way or another, but I'm starting to think I am just weird as I felt great before the scan that showed progression and increased pain before the scan that showed Fas working for me. Go figure. On the "no fun" issue though, since switching to Fas from anastazole I feel so much less depressed and so much more like my old self emotionally. I hope this will be true for you too! I'm glad to hear the shots were not as bad as you expected and hope you are not too sore today. I am waiting for a call from my mo on the Ibrance. I would be absolutely honored to be your Fas+Ibrance buddy going forward! Oh yes, and thanks so much for that picture from Malibu! This Midwestern gal always longs for the sea and I could just about smell it when I saw that photo.
Cristina, I see you will be joining Deanna and I with this tx. It will be great to have you gals to compare se's with, as most on the Ibrance thread seem to have it paired with femera rather than Fas. 4 shots in 1 visit?! Ouch! I'm sure you are probably hurting somewhere today (and I can guess where, ha ha). Hope you feel better soon now that you have a tx plan.
Dune, I was so glad to hear your chemo seems to be kicking ass on those swollen nodes. That's got to make it a bit easier to take when you can see results. Hope the bag'o'red gets you back on your feet again. Gentle hugs to you
Xavo, I'm afraid I haven't been able to follow all you have written, but your frustration and anxiety sure comes through. I am so glad you have an appointment at Dana Farber and hope they will be able to sort through the confusion and get you on a tx plan you feel good about.
Romansma, Glad you got your Xtandi and hope it does the job for you. Wow, that's quite a pain med schedule to keep track of! Is there an app for that? Kidding about the app, but sorry you are in so much pain all the time. Really have to hand it to you still managing to have fun and live your life while dealing with that pain.
Myra, Is that grand baby here yet? Can't wait for the pictures!
Cathy, 8 days with no BM? OMG, you must be so miserable. Hope the Relistor gets to you soon and works this time.
Hydrane, Nice to see you again and I'm glad to hear you are slowly feeling a bit better. Getting used to this mbc stuff sure does not happen overnight, so be patient with yourself. Lots of ups and downs is right. Hope things continue to improve for you. Do tell about the pie diet!
Aurora, Sounds like you are going through a rough patch. Hope the chemo turns things around for you soon and is not too hard on you.
Dee, Hope the pain is just a temporary flair and the rads do their job is kicking it to the curb.
Lindalou, We are almost neighbors! I have been getting my care almost exclusively with Marshfield Clinic as my insurance dictates. Sounds like you have great faith in your neurosurgeon, hope he is able to help again.
Annie, hope you are back home and resting after your scan today. Now for the waiting, which we all know is the hardest part. Sending you hugs and positive thoughts and hoping you get good results soon!
Terre, Don't know how I could, but I almost missed you! Thank you for all of your light hearted posts and beautiful (and occasionally furry, ha ha!) photos. Hope those dark clouds have been banished and winter is waning down under.
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I read someplace that patty was going to spend as much time and energy with her kids before they were going back to school. Hard to balance with the pain she is having.
Hope everyone gets some relief today
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Hi ladies,
I posted late last night and still can't keep up.
I am worried about Patty, does anyone have a phone number to send her a quick text? She can just text back, tired, sick, etc. Or we can text her husband? Just she just have bone mets or mets in the liver, lungs, etc? I know she just got a scan but I can't remember.
Deanna-honestly, the pain meds you are on don't sound very strong. I have to admit, the Subsys spray I get under the tongue works within 5 minutes, that is my breakthrough med. I usually take 200 microgram which is 2 sprays, twice per day, but it's not enough. I'm taking it now at 3 am as well, as I wake up in pain. Perhaps this may help you? Subsys is ONLY for cancer patients and only for those who are already on around the clock pain meds (Mine is Oxycontin 30 mg bid, which I complained to my onc is "doing nothing" and she said "try going without it and then say that.") I don't think a lidocaine patch would work for me, there are too many spots with pain for me, I would need a lidocaine body glove.
Hope-sounds like you are on a stronger regime than Deanna, and yes, a little hard to remember. I guess the one thing I don't like about both of your breakthrough pain regimens is that you have to wait 20 minutes for it to kick in and I hate to think of both of you suffering like that. Has your pain management doc mentioned fentanyl patch or spray? Glad the Xtandi is not causing many side effects. Very curious to see how this works, as I assume it will be down the road med for some of us. Is this an off label use? I see it's not normally given for breast cancer.
Linda that is SO annoying they postponed your infusion based on .1 off lab value. How stupid. Hope you get it asap.
Xavo- That is annoying the one hospital can't upload scan results to your current hospital. Can you go to that hospital and get a CD or even the actual films and bring it over to your current one for comparison?
Hi to everyone else, I am posting from work as I don't feel like working, but I will post again later from home.
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Jobur- Yes! we are neighbors...I actually started out in Marshfield, but I wanted a female surgeon so I'm at Aspirus. I do go to Marshfield and UW Madison for some other appts though. Is your onc Dr. Onitilo? or Mercier? I am involved with the Stevens Point/Marshfield Center too. I have a funny Dr. O story to tell you....you can PM me.
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Chaney, yes, I'm using Xtandi off label based on some trial results. There are ongoing trials for both ER positive and negative breast cancer right now. We shall see how it goes!
On the pain med side, I had never heard of the spray. Interesting. Yes, when it gets tough there is a 20 minute time frame and sometimes the tears flow. I try not to let that happen by staying front of the pain as much as possible. But, sometimes, I'm having fun and miss taking something by an hour or two and I pay. I like the idea of the fentanyl patch because it seems so much easier to deal with. I'm guessing our MOs have a series of meds they use for escalating pain and I must have landed on this very complicated schedule for some reason. I have a 2nd opinion appointment next week at USC and I am going to run this by the doc and see if he has any input, among other things, of course.
I just want to comment on the fast moving nature of this thread and how we find ourselves feeling guilty for not addressing everyone. I felt this way too and didn't participate because of it. That's not good. I'd like to give everyone a pass. Participate when you can and leave any guilt behind. None of us can keep up! Sounds good
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Hope, I like your suggestion! I sometimes feel bad after I post and realize I've inadvertently overlooked someone's important update. And it's challenging to read back and make notes, hoping not to miss anyone the next time, especially since some of you are so very thoughtful at catching every question and acknowledging everyone's comments and photos!
Cristina, yes, I know my pain med sounds "light weight," but the heavier ones I've tried make me really sick, and Dilaudid literally sends me into orbit, so I was thrilled to find Acetaphenomin+Codeine #3 as an alternative. Also, the larger cancer centers like Rutgers should have a pain management/pallative care doc available for you. That was one of the first docs they brought in when I went back to UCLA w/my mbc recurrence and in a lot of pain, much of which turned out to be from those pathological fractures I didn't know I had at the time.
Cathy, I can't imagine 8 days without a BM. You must be so miserable! I've had really good results with Shaklee's Herb-Lax (1 a.m./2 p.m.; main ingredient is Senna), plus I also take a pro-biotic that seems to help.
Xavo ~ So glad you have an appt at DF on your calendar! And same for USC, Hope!
Dee, so sorry you had a rough time with the rads. Hopefully, it will be a short-lived flare and things will settle down quickly.
auroaya, I'm praying the Abraxane works wonders for you... that your MRI turns out well, and that an ortho surgeon can come up with a plan to fix your hip when you can safely take a break from chemo. Extra hugs to you because it sounds like you really have a lot going on right now.
Shout outs to Hydranne and pie diets, susan3 (thanks for the added info' on Patty), jobur (your post is one of those that made me think, how nice that she mentions everyone specifically), Terre, and everyone else!
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Romansma - I like your suggestion! It's way too hard to keep up and sometimes we have time and sometimes we don't.
Jobur - the infusion and vaccine was today. Nothing to report yet.
Sending hugs all around.
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Jobur - what a great post. Can I be amazingly lazy and say "yeah, what Jobur said"?
Auroaya - so sorry to hear crap news but hoping the new regime kicks the cancer to the kerb.
Romansma - wowsa..that's quite a schedule, but you're so right to stay ahead of the pain.
Linda- glad you got the infusion. The nurse how said no is just silly. There's assumed to be at least +/-10% for testing and lab errors. Sheesh.
Cathy - hope you're getting some relief.
Hydranne - good to see you! Sending hugs.
Dee - ouch! Sorry you had a rough time. When you mentioned skin burns, it took me back to my radiation for Stage I. I am white as white can be; I basically don't tan. Not albino, but close. So of course, I burned with the rads. Which was bad enough. But then when it started to peel like a sunburn and itch, that was the worst. Sitting in meetings, just dying to scratch my boob. Hopefully you won't go through that, the flare will be gone by the time you're reading this, and the skin burns are better.
Deanna - I hear you with pain meds making you sick. Sorry you're having so much pain.
Hugs to everyone else - boss is here so got to get to work!
Terre
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Hello to all,
Ok this is going to be one of those times where I cannot address anyone, please forgive me, I had such a long day at the cancer centre. A 9:00 appt and my scan wasn't done til near noon. It went well, nurse got my vein first time for the IV. I felt really odd this time when the contrast was pushed through, I got really really hot and my heart started beating fast and of course I felt like I peed my pants. I sure don't like that stuff. This thread has been busy today and I promise to be back to address everyone in the morning. My bed is calling, and I'm sure I'll be up all night making visits to empty my bladder from all this water I've been drinking. Argggh I wish there was an easier way. I seriously feel off tonight.
Hugs to all of you, Annie
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Annie, I hear you...I never feel quite right after scan day. All the sensations you describe plus feeling a little nauseous not to mention the anxiety until the results are in. Sleep well and let's pray you get a great report.
Amy
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Annie, ditto what Amy said. I also feel nauseous and "off" the remainder of the day and the next day as well, and have also chalked some of it off to anxiety. I've also noticed that the warming sensation from the contrast sometimes just hits me much harder than others times. Anyway, glad it's done and behind you, and hope you can sleep a lot of it off and will feel much better tomorrow.
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