My Husband, My Life, My Love, My Family, My Cancer
Comments
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Gracie, I am sorry that your TMs are rising. I still hope that they are not due to progression and that the scans will yield a pleasant surprise. If the scans do indicate progression, then it is good for you to know that there are still many options available to you. It looks like you have been on Femera, so would your MO start you on Faslodex along with the Ibrance? I have been on that combo since August of last year, and I have found it to be quite tolerable. Let us know what you find out. We are pulling for you.
Tanya, Some doctors do not think that tumor markers are a useful tool, and they rely on how a patient feels as well as other blood tests and scans and do not include tumor markers. Although TMs are good indicators for some people, they do not rise or fall with progression and healing for others. My MO tests my TMs every four weeks now along with the CBC and CMP. My MO looks for trends rather than the actual number since, like Leapfrog, my TMs are always high. You should ask your MO for an opinion on TMs
Deb, I am glad your MO is being cautious and scheduling scans. Hopefully, the results will be good and you will be able to celebrate. 32 months on your first line of treatment? I am impressed. That is wonderful. When and if the time comes to move on to a new treatment plan, I hope you respond as well or better and for as long or longer. You are already an exceptional responder in my mind.
Lynne, Since you are a Pat's fan(me too), you saw a good game. I watched it from my nice warm house!
Claudia, I love the picture.
Gotta go...iPad is running out of power.
Hugs and prayers from, Lynne
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I'm here Micmel. Yesterday was my ususal every 3 weeks H&P infusion but on my way out of the clinic workers were hanging the Christmas wreaths for auction and I was struck with the feelings of one year ago, seeing the wreaths through tears. On 11/16/16 I met my team and was told I would be treated as stage IV due to a positive supraclavicular node, it took the tech 5 try's to get a sample (I was so terrified of needles then). This time last year I was having scans and a bone biopsy, everything was scary and I was exposed to so many strangers touching me, etc an so trying desperately to read something, anything on their faces. Today, I'm better, back to work and back to the here and now.
Had labs yesterday with CA 15-3 in addition to my usual CBC, not sure why or if my MO normally adds this at the 1 year mark but I feel like it's just another thing to be anxious about, ugh.
For dinner I made French bread pizza topped with pepperoni, red onion, mozzarella and a couple dollops of ricotta.
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Mae~I can completely understand why this would be a hard time of year for you. Mine came after the new year. I kinda already knew. Then the confirmation, I saw my tears through a snow storm and watched my family outside together digging out the cars spending time together. I had no idea at the time if I would ever see another snow again!when I was reading how you felt, it was almost as if I could understand exactly how you were feeling because I have seen somethings through eyes like those. I have felt all those similar feelings. Terror. Relating to so many people touching me. You're not alone. I am glad you're stronger now, keep being strong with me and I enjoy your humor and I enjoy your strength and constant optimism! I adore you, and oh yeah pleasepass me some of that pizza. Much love for you my friend ~M~
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50's~Does your oncologist follow your tumor markers? I find it interesting that some doctors really use them very closely and others do not. Some scan more than others, some follow different XGeva time patterns. It's the same medicines and combos, but some are differently taken and some oncologists are more lenient than others. My onc would Never agree with me to decrease my doseage. I asked him. He said I'm so young he would never give the cancer a change to regain any edge of strength. He said I have limited disease, non measurable disease which is not active at all that he wants to keep that way! the combo Of anastrazole and ibrance Come together for a good combo of power. I wish I understood why it works so good for some, but not others. Makes no sense. I do have some exhaustion and fatigue daily. But I have done everything in reverse with the way things happened for me. I realize that some stage four women do not have their breast removed. They immediatly get out on treatment and sometimes
Surgery is just not an option. When I was diagnosed, I went from stage two one week, to two weeks later after my first terrible AC red devil chemo, I was registering for my second round and got pulled out and sent up to see my onc. I knew something was bad. He said stage four spot on liver, no surgery, no heavy chemo, just onto ibrance. Meet with surgical oncologist asap. Went into gyno surgeon, he took one look at me and my case and said oh no, we are taking that spot out our your liver immediately. You're too young and it's no where near any fucntioning part of your liver and it's no bigger than a pencil head. So the AC chemo continued shrink my breast tumor to where To I could barely even really feel it. I under went a Major surgery on 6-21-16, with the expectation of being in the hospital a week most likely at least three days in ICU. I was having a left mastectomy with full removal of nodes and auxiliary etc.. then at the same time I was having my Liver resected. I had 66staples across my belly like a road map. Woke up in a regular room because I did so well. Spent a week on onc floor and went home Ned. Started abraxane two weeks later after healing a little bit. Wasn't enough healing at all abraxane is tough stuff also. During the time of abraxane and waiting in between surgeries for port and etc... those little shi*s ended up in about five spots in my bones along my back/spine area. They are not deep, by any means but they are there. Supposedly they are dying, which is why my tumor markers are 20. The disease is dormant and I'll take it. But loosing my breast and my beauty is something I'll never get over. I loved that breast. It didn't define me. But it was apart of who I was for 46 years. It's a very sad thing to have happen to us women. We are given parts and we get used to having them. Just like our hair. It's a really big deal when something like this happens. And people say ohhh it's just hair. Excuse me, but when have you chosen to go bald lately ? Uh I didn't think so. Much love ladies. Goodnight ~M~
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Tanya...In Australia we have FBC, which I'm assuming is the same as your CBC, every cycle on Ibrance and my oncologist also runs a CA15.3, which is the tumour marker test. If I don't ask for the number, he or the nurse don't tell me so you could try asking them whether they run it or not and, if not, you can try requesting one. As Micmel says, it's your body. I used to ask for my TM every time but I'm not going to any more because last cycle it had dropped by 60, to 450 and this cycle it's jumped back up to 520, which is what it was at the previous CA15.3 so that just shows that it's not terribly significant in your overall picture. Mine is jumping all over the place. Oncologists prefer to go by how you are clinically and what your scans are showing so I've decided not to bother asking for mine any more.
Lynnwood...I agree with Micmel. 64 isn't a high number by any means. Normal is less than 35, or 33, I've forgotten which, and a jump of 2 or 3 is marginal. When tumour cells die there's a flare as they try to keep alive, much like the way a tree will throw out lots of seeds when it's dying, to preserve its species. Unless your oncologist is seriously worried, I wouldn't worry unless a scan shows there's a reason for it.
Micmel....I've been told I could be on the Letrozole/Ibrance combination for years and years and I choose to believe that. As I said in my earlier post, it's often a very slow process in killing off the cancer cells and I had a very high tumour marker with a massive amount of bone mets so I'm not surprised mine is taking a while to show a really good result. Meanwhile, my two scans have both shown stable disease and stable disease is good enough for me! I don't see any reason to doubt it will stay that way while I'm on this regime. My philosophy is to take the tablets, show up for appointments, follow instructions and the rest of the time try to keep out of mischief....or into it, depending on my mood hahaha!
Claudia...your husband looks like such a lovely man!
Gracie.....I'm so sorry you have this worry. I'll be sending prayers over your way for Friday and Tuesday and lots of hugs as well.
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leapfrog~ you're adorable! I loved the mischief comment! So appropriate for somedays of how I feel. I agree. I am doing wonderfully on ibrance. And I want everyone to have the response I have had. Stable is great!!!!! Stable means non active disease. Which is what we all thrive for. I don't know if Australia has different levels for their blood work but I think here normal tumor marker cut off is around 42.3 or somethings like that....
Lynnwood~ you're not that far off sweetheart ! Hang in there darling we are here surrounding you!
Gracie youre on my mind, but then again you already know that, one of my very first friends you are on these threads here at BCO, and I adore you. I am in your pocket remember? Just smile down at me once and a while. I'm sending all my love. 💕
Much love to all ~M~
Nan~ ❤️😞
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So sorry, Gracie. I'll be praying that the PET scan brings better news.
Great pic, Claudia! So cute!
Lynwood, hoping you get good results!
I'm in what I call my "hell" week. It's the week following chemo (which I had Fri). After I'm done taking my post chemo steroids, it begins (Mon). I get awful stomach cramps and diarrhea, thrush in the mouth (so I have trouble eating, the dizzy spells when I go to stand up, and just feeling lousy. I know by the end of the week, it will have passed, but I really am sick of feeling like this every three weeks. As a bonus this time, I am also having pain on my sides (my ribs) and right scapula (all have cancer in them). I sleep on my sides, which makes this impossible, and even sleeping on my back is awful. I've been sleeping on a heating pad, which helps a little. I mentioned this before my chemo last week (it started the week before) and the PA suggested a fentanyl patch. I told her that I wanted to not be spaced out and be able to drive and function, and that I'll save that drug for much later on! It's bad enough the opoid drugs space me out (so I rarely take them) and the medical marjuana they gave me does too (even though I told them I did NOT want the high), I'm not starting on another that just makes you loopy and does nothing for the pain!! UGH!
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Scan is set for Friday at 8:30. Have to be there at 7:00 to drink the contrast. I cannot drink the thick nasty Redicat, last time I did I vomited all over my steering wheel driving to the scan. I have refused to drink it ever since. They have an alternative that is literally tasteless ( really couldn't believe it but true) but you have to drink it there. Thanks for all of your positive words and good thoughts..they really help! You ladies get the emotional highs and lows that we all go through. It really helps to know that someone truly understands.
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Lynnwood~ I will be with you in spirit. Like I said to Gracie, think of a little mini me, in your pocket. I am sending strength and love your way. We all totally get what you're going through. I hope the results are good and you can breathe a sigh of relief. Holding you In thought always ! Much love ~M~
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Lynne(Man)~ I am sorry that you're not feeling well today. Who the heck needs stomach issues on top of everything else we go through. I can relate to the thrush, I don't have that. But the ibrance wrecks my mouth and it burns like crazy. Somedays I still can't believe we even have cancer. No matter how long it's been for any individual here. I hate cancer and what it does to my friends and my family. I honestly hope you're feeling better. The medical marijuana would be my best friend, it loosens up tight muscles, and allows a calming effect, and in time the high, calms down. I enjoy the calming feeling. Hope that you feel better soon. Just rest sweet friend, it seems that is what your body needs!
Hugs to you darling ~M~
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Lynnwood~ whenever they made me drink that hand lotion barium white chalk, my onc nurse told me to add chocolate sauce to the mixture, it really worked for me. I held my nose and just drank it quickly. I have done it everytime since I've scanned like 6 or 7 times now, I did it and the results never had issues. Anytime you can't just go in the morning. You could consider that !! I'm thinking of you !! Hugs ~M~
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Gracie and Lynnwood - I am sending you both soft, gentle hugs and prayers! I will be thinking of you both during your scans.
Lynn(man) - Argh! I remember those chemo days. I'm sorry you aren't feeling well. I don't have any comforting words to offer, other than I am thinking of you and hoping for some relief for you.
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Hello Ladies, I am sorry for the abruptness above, but my day has gone to hell in a handbag and I need to vent to someone who understands our daily struggles. My day started out good. I was feeling good and decided since Ihad had a few issues with Bigb that we were going to go back to basics, groundwork. I brushed him all out, and as we were doing his stretches, (I use treats as motovator), my thumb got in the way of his teeth. OMG! I forgot how much it hurts to get bitten! After a few minutes of feeling like I was going to throw up, or pass out, I ralled and got back to business. We started Lungeing, and when I turned him to go the other way, he took about 3 steps and proceeded to buck so hard, he fell to the ground. Thank goodnes he did not hurt himself! So, I'm thinking he's being a butt, because everytime I ask him to go in that direction, he bucks like crazy. Finally, I remember the old rule of thumb that says, if you are having behavior issues, get a physical. Usually, behavioral issues stem from pain or illnes. So, I put some hay in the pasture, put them out, and call the vet. I decide to get some lunch, go to Tractor Supply and the grocery store. I finish lunch, and am having a pain under my left rib. I ignore it. Go to the PO, go to TSC and get to the grocery store. Now I pain is getting worse and I feel like I am bloating up. Pop a GasX, and force myself to finish. Driving home and my pain is really getting bad. Go home, unload groceries. and see that the dog has had an accident on our newly cleaned rug. Get out the spot bot and clean up the mess, after putting away the groceries. The vet is on his way, and I haven't cleaned stalls yet! Out to the barn, start cleaning stalls, then go bring horses in so I can Clean Bigb up again, because, of course, he rolled, over and over, in the pasture. Oh, have I forgotten to mention, my thumb has been throbbing since this morning. I get Bigb out of his stall, and he wnts to go a little further than I wanted and I yelled at him! Ladies, I was so upset, I had to walk away. You never deal with animals in anger. I had to tell myself to walk away! That is not me! I love my animals like they are my children, yet Igot so frustrated and angry, Ihad to tell myself to walk away. When I realized what had just happened, I had a full blown meltdown. Am I just kidding myself that I can still have my horses? Am I kidding myself, that this is in any way, shape or form, a normal life? While in NC, I was so tired at night, I would cry, So, remembering that, and dealing with today, my big qustion was WHY am Idoing this? Why? This is not a life. At least not the kind of life I want. I asked myself, should I just get rid of my horses and my dogs? Can I continue to do this? Feel this pain and nausea and fatigue? Maybe its time to just be done. I have lost so much, do I want to lose anymore. Maybe its just time...
I'm so tired of being tired, I'm so tired of feeling so inadequate in my life. My barn is filthy dirty and disorganized, my horses have never looked so bad, the pool is full of leaves and Ihave no energy to clean it. I have gone to move the laundry from the washer to the dryer, 3 times, 3 times and I finally just got it done. The dogs are hungry, the horses stalls need rebedded, which I did buy today, but can't manage to get to barn. Why am I doing this? I'm a mess. I knew I could come here and you ladies would understand how I'm feeling. I don't want to give up any more pieces of myself. I'm over it. I don't want to live with cancer, I want my life back! Somebody, please give it back So sorry, but this is what I am feeling right now. My Dh would freak out if Isaid all this to him! I amtired of seeing the bright side, always trying to stay so positive, act like nothing is wrong, when everything is wrong. 5 1/2 years, I am tired of sayinng, isn't it great that I am stiil here, when Ithought I would be gone. Isn't it just grand? 5 1/2 years, of watching myself disappear bit by bit, until Iam unrecognizable. Why? I WANT ANSWERS...I want to scream at the top of my lungs...just tell me why...why keep beating my head against a brick wall... why, why, why....
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Claudia~ I swear we are like sisters. I had a my break down today myself. I feel your pain so much that I have tears pouring down my face. I am sorry that you had to go through that all alone. I realize that sometimes we can't always unload every single thing on our DH's, god knows they are already afraid enough. It's always the why's that get me too. What did we do, why is this happening , when we love the life we lead. I am so sorry my sweet friend that you're feeling this way. I am only 22 months out from my diagnosis,but it feels like eternity. I walk outside and the sky blue is different, even the simplest thing as a breeze. I know your horses are very important, I always told you how amazed I am at your strength and ability to do all that you do every single day. Meltdowns will absolutely happen, I feel sorrow everyday for us all. I understand the feeling of wondering why we fight so hard when we are constantly fighting with our own bodies. I had Chief today for a visit. I was out and with him for six hours. I was exhausted, I fell asleep for an hour, I had slept 9 hours last night. For what ? To wake up counting the minutes before it's time for bed again. I feel like we were having the meltdown at the same time. I put my head in my hands and the tears just came. Anger, it's maddening, because there is no one to punch, no one to blame. We walk our way through the syrup of our life,hoping for stability every scan and every bloodwork. Somedays I believe I can do many years of this. Others. I feel like I am in a hugeAquarium type bowl and perhaps I am the test. How much can we poke her before she explodes, how much can one woman take. Poke poke poke. Claudia honey, you're not alone. Not in the least. My heart hurts with yours. I understand friend. I truly truly do.
Love you precious woman. Hang on to us.
Much love ~M~
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Hi Ladies
Mae I made pizza last night too. But I tried to be healthy and tried a cauliflower crust. It was OK. Today when I ate it for lunch it was awful. I guess I have to stick with fattening food because taste is really important.
Gracie the Ibrance and faslodex has gotten rid of the tumor that I had in my spine, belly, and ribs. The lesion I have in my hip is still there but it has shrunk from 20 to 5 and I'm not due to have scans again until April I think. I also had radiation to the hip and spine, and am hoping that all of the tumors are being obliterated. The Ibrance is not as bad as the Taxol, Taxotere and Adriamycin cocktails that I endured in 2003. The SE's from these were severe but I only took them for the 6 cycles and then radiation. We are all hoping and praying for good results. I hope that you find better treatment options. Until something better becomes available we're stuck with these treatments. We're all managing, however not like the Julie on the commercial.
Much love hugs and hope sent your way.
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Bigbhome, WOW! You have had a day! I'm so sorry that you had to deal with all of that. You do SO much, i could never ever do half of what you do. I have to pace myself just to do a few loads of laundry and cook dinner. It truly is bittersweet when we are still alive but scared, frustrated and exhausted. Yet we keep plugging away because life is such a beautiful thing. I look at other people when I'm out and think of how carefree they are, laughing and joking while I struggle to get through the day. I had a meltdown unpacking the Xmas decorations, telling my son which ones I want him to take when i die,I know I scared him and felt bad. Your words are very eloquent and I have felt exactly the same way.I so wish I had the ability to take all of this away for all of us. Hugs to you my friend. We totally get it.
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Big I and we all have been there. The moments when we try to be normal and then we get slapped down. I don't tell my husband all the times when I am broken. Sometimes I just get angry and feel that all I do is sit around getting fatter, I just feel lazy, but I get encouragement from all of you ladies. I know that it's the cancer or the treatment or the anxiety or the gigantic change in normal. It makes me exhausted but at the same time I am hopeful. I pray for all of you and I love that we all persevere at the end of the day and have a husband or family to vent to.
Do any of you ladies still get mammograms? I had a partial masectomy in 2003. I was getting mammograms and ultrasounds of my breasts for 10 years but now since my recent Mets I haven't had any. My doctor ordered a bone density test and I asked the woman who usually did my mammo and I'm conflicted. Any advice ladies?
Lots of prayers all day for all of us.
Deep sighs coupled with hope.
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Lynnwood and Tanya, and as always, Micmel, thank you for the shoulders to cry on. I ' sure tomorrow will be better.
Tanya, I wanted to tell you 2 things. One, what a relief they got that serial killer, right. Two, when I was dx, 5 1/2 years ago, my surgical onc's office sent me a reminder to get my mammogram. I asked my MO and her reply was, well that horse has already left the barn, so why bother. Good point. The bone density way more important at this point Imo.
Hugs and prayers,
Claudia
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Tanya~I have never liked left overs of any kind, except chillie, then I even like it better the next day, or home made spaghetti even yummy! I agree that ibrance sucks the energy right out of you, for me it's more of a cocktail combination that I take every day that contributes to it without doubt. It's so hard to just plain live with cancer. I had the heavy AC and abraxane, it was awful. I thought I was in living hell. I am so glad though, that ibrance is kicking some major Butt for you beautiful!! Keep it up!
Lynnwood~I can completely understand how Christmas would make you feel that way. I always sit and think, how many do I have left? I look around my house and think how is it even possible that one day, I just won't come home ever again. All of my things. Even something simple as a beautiful flower. Or my brush with my changed hair. It's like we get tortured a little everyday, I want my life back as well, I miss my beauty and my strength, I'm growing my hair back now, but it's not my hair. Looks nothing like me. I guess I will wait and hope I can keep it long enough to have it back. I already told My Family i am not doing the heavy chemo again! I too look at people that aren't sick and don't understand why I am.
Claudia~ you're on my mind. You're soo not alone!
Gracie~ so are you, on my mind. hugs!!!
Today sucked for lots of us! But we have each other!! Sometimes we just have to let it out.....all out! Lean on each other, it's all we can do!
I think my issue also deals with my body appearance changes. I don't feel sexual anymore. That feeling has died. I love my DH, I want to be able to be with him the way I used to be. But with no estrogen. It's not very comfortable and actually hurts all over my body, between my bones in my spine, or the map sized scar from my liver surgery and conccaved chest, where my breast used to be. I miss so much of who I was, it's shattering, there is just no way to recover back to who I once was. No matter how much I cry!
Much love ~M~
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thanks everyone! I am truthfully scared half to death of Ibrance. I’ve read through it’s thread and in thinking holy cow ! Living by myself and being by myself about 99% of the time I’m really concerned about lightheadedness and falling or just passing out and nausea and the exhaustion it takes everything I have right now to keep my house cleaned up and yardwork halfway done because I never get it all done and I am at it from sun up to the time I go to bed trying to keep things in order around this house I cannot imagine being out of commission a week or more every month. When I went through chemo before Tom was alive, and he was such great help. He helped around the house and he was here if I had a panic attack or if I got short of breath or if I didn’t feel good I got nauseated. He cooked for me when I was sick to my stomach. I truly have no idea how I’m going to get through this by myself!!!
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I haven't had a mammogram since the day I knew I had cancer. Since I get chest/pelvic Ct scan every six months and before that every three. I was told it would be visible, and the full body scans would have picked up anything active or present. Seems like a mammogram would be over doing it. IMO. Hope we all rest well! Hugs for all!
Mae~ hope you're ok too, thinking of you as well!
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Gracie~I have been on 13 months now. It does give you fatigue, I have rarely ever been nauseous, and if I was, it was because I didn't eat enough. My mouth gets sore, I sleep as much as I can, but things get done. Talk to your doctor and ask about ritilan, I take small doseages each day I know I have things that have to get done. I have never been dizzy, and I Am alone everyday, all day and some nights as well. DD works full time and takes classes, DS works and Is in college. My DH spends the week away out of state For work & I have two big dogs. I do it all by myself. You can do it! Claudia also is on ibrance, she takes care of horses. (in between our meltdowns) and a barn. You name it. Many women do good on ibrance. Please don't be scared. Tired is the worst thing I feel on this. Occasionally heartburn, but that again is my failure for eating! Lean on us darling.
Much love ~M~
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Thanks Mel! Ok so how often do you have to have blood work up? That’s another concern because I truly can’t afford gas to be going back and forth a bunch, and the thought of driving an hour to the docs when my blood counts might be tanked is scary too! My blood counts tanked bad on chemo
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Gracie, don't be afraid of Ibrance, it has been like a miracle drug for me. Very easily tolerated. No nausea or lightheadedness. Mainly fatigue. I worked as a nurse for 2 years on this combo. It's been a very effective treatment for many of us. I just finished cycle 32
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Lynnwood, that makes me feel a little better. My daughter in law who is also a nurse knows a guy who has been on it long term and it’s still working for him
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Gracie~in the beginning for me, it was monthly. As long as the levels were good. I got to go onto the next month. I also received XGeva at the same time. If things keep level and you respond well, it can move out more And more. I started monthly and now I Have to have blood work every three months. Scan every six. The beginning Is monthly. I really hope it will go smooth for you. Are you Starting on 125mg?
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He didn’t say Mel, so I guess I’ll find out after my pet and bone scsn
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my pet scan is on Friday at 1. I’m going to have coffee in the morning with cream. Instructions say no caffeine 24 hours before so I figure having coffee at about 8:30 should be ok.
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I'm here, trying to catch up with everyone but it's now bedtime. I met with my neuro rads onc today and she reiterated what the nurse said, that my follow up brain MRI showed the expected results of shrinkage and nothing new. Then I got my first post chemo haircut, just a clean up/trim really, I have an off site work Christmas party Friday night. Finally, I decided to update my iPhone, unfortunately it somehow got stuck on restore mode and I could not escape the restore screen, AT&T store couldn't help, so I proceeded to try the restore as directed by the screen message from iTunes on my laptop but my laptop kept freezing, so I spent several hours yelling at both devices. So, off to the Apple Store I go tomorrow, ugh.
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Mae, oh gosh! I'm computer illiterate! Glad you got it all fixed!! (oops sorry meant I hope you get it all fixed!!! )
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