Bone Mets Thread
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Wow...what a Monday I had...In the ER again...I am under quarantine due to a Highly contagious intestinal infection called C Difficile Colitis...will it ever stop...my immune system is so low...that I'll catch anything...Well...start another new chemo Thursday...I hope they find something...Going to have a blood transfusion also...Another fun full week for me... Oh boy!!
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feeling determined. 0 -
Freebird and Patty, big hugs to you both! Oh my, hope you both start doing better soon!
I'm in bed today. My back hurts so bad, having ahard time getting up. Had a great time on cruise and pain was under control. Not sure why it works this way.
Ibrance should be delivered today and I will get started. Hoping SEs are easy!
Carnival's towel animal and me!
Running as fast as I can to fit in as much life as I can!
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So sorry, Carla. I wonder if you and Patty are dealing with the same thing? (Not sure if C Difficile Colitis and what I think is C Diff for Patty are quite the same.) Anyway, glad you are feeling determined! Sending positive thoughts and prayers that you kick it quickly!
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patty,
So sorry that you're back in hospital, but it sounds like that's best for now (though not where you want to be).
Free bird,
Are you quarantined at home or in hospital? C-diff is nothing to mess with. Take care.
Caryn
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Romansma, looks like we were writing the same time. Love the photo, and so glad you had a great time. Onto Ibrance. Hoping it's a miracle drug for you!
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Carla and Patty, so sorry to hear you are both suffering from the terrible C.Diff associated problems. It is a nasty bug. It is usually caused when the good bacteria in the colon are taken over by the bad guy bacteria Clostridium difficile. The normal bowel flora is usually disrupted by recent antibiotic use or some other med. Enter the ugly c. diff bacteria. The C Diff colonization occurs after this disruption to the bowel flora by ingestion of heat-resistant spores, which convert to the vegetative forms in the colon and produce 2 kinds of exotoxins (stuff the c diff spews out) that are the bad guys that cause the yucky diarrhea, abdominal pain and sometimes fever and belly distension. Hope this helps you understand what you have. It can be treated based on your specific type of c diff and what caused it. Hopefully, removing the cause will help start you on the path to feeling better. I hope and pray you get outta that hospital asap. I'm sure your health care teams will get you to "stop going" and feel better. Prayers your way on the wings of good karma!
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I'm so sorry to hear you are sick with this C-Diff thing. It sounds completely miserable.You must feel so weak. I hope you both feel better soon. If it takes being in the hospital to let you feel better, then for now, that's the place for you. I'm assuming here that they have some sort of medication that eases your symptoms.
Whoever it was that said they had ONJ and only an oral surgeon was able to diagnose it, thank you. It's just bothering me so badly. I figured there was nothing I could do. I had the CT scan. Nothing showed up. However, something is clearly wrong. It's even swollen a little. So I called and made an appointment. It's kind of far off (March 18), but I asked them to put me on their cancellation list. Besides I don't know what I can and can't do while getting radiation. And if she puts me on chemo, I also don't know what I can and can't do. In any case, I took some action. You said that your onc would not or could not diagnose it, that only your oral surgeon could. So maybe that will happen for me.
Romansma, you look fantastic!
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Patty -- So sorry you're back in the hospital. 6 days sounds like "a while" to me! I hope you are able to get back home soon.
Freebird - Have heard this c.diff stuff is nothing to mess with, and can be miserable. I hope you and Patty are able to get it under control soon. I'm sending love and healing energy to you both.
We had a great time in Chicago over the weekend. Stayed at a very nice hotel, had a great dinner and spent Monday at the Shedd Aquarium, which I love. We took the train there and back, about an hour and a half, and it was all stress-free. Just a nice overnight getaway. We were feeling especially celebratory because of the big drop in my tumor markers, so we had several glasses of wine with dinner, a huge treat because I haven't had any alcohol since the new dx. I'm back on the wagon now, but it was a really nice time.
Romansma, great picture, and I'm glad you had a good time. We need to do that now and again to keep going. Good luck with the Ibrance. We'll all be anxious to hear how it goes. Here's hoping for no big SE's or unicorn poop!
Have a good day, everyone, and a peaceful evening. Love to you all.
Sharon
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Carla / so sorry you are in the hospital. I know - it sucks. Praying for a speedy recovery for you
Romansma - glad you got to enjoy the cruise pain free. Excited for you to start the lbrance. I read on another thread blue cross is covering this with a 40 copay. That's awesome
Dune / don't overdo it. Sounds like you've bee busy. Overuse will def make your pain worse.
Again thank you ladies so very much got your support. Can't wait to feel good enough to respond to each.
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Carla, so sorry to hear you're in the hospital. I am sending healing hugs to you and Patty both, praying they get this nasty bug under control asap.
Romansma, so glad you had a nice time away but sorry to hear you're hurting today. What a beautiful picture, you have a gorgeous smile!
Dunesleeper, hoping they get to the bottom of your jaw problem, hang in there and praying for the rads to give you pain relief.
Sharon, sounds like you had a great time away, good for you and a big drop in tumor markers is something to celebrate!
Hugs to all, Annie
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Carla, so sorry you are having such a hard time. I truly hope you have a support system there that gives you loving hugs. From Boise to Ft Lauderdale is a very long hug, I hope you can feel it!
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Patty, Carla, thinking of you both this morning, and hoping things are improving! I'm headed to my local onc's office for bloodwork shortly -- first time in about 3 mos. Drinking water like crazy, hoping for an easy stick -- so minor compared to what some of you are dealing with, but I can still feel my stress mounting.
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Romansma - what a great photo! You look fantastic and happy. So glad you're starting on Ibrance.
Carla and Patty - sending sympathy, empathy, hugs, and good thoughts your way. Hope they get that nasty stuff under control soon!
dlb - hope you have an easy stick. I totally hear you; I think the record for me is 5 tries.
Dune - if your mouth/glands are swollen; I would think your GP would give you an antibiotic. If they're worried about ONJ, they will stop Zometa infusions. I found a mouthwash that has litocane in it (over the counter here) and I took a Q-tip and swabbed the sore part inside my mouth. I had bone sticking through my gums; that was what was causing the majority of the pain. Good luck in getting this sorted; if it's ONJ, it hurts like hell. As long as I didn't talk, swallow, or breathe, mine was fine.
It's chilly here today and the oak leaves are falling a bit. Makes me sad; I want summer to last forever. But on a bright note, I start at the Kitten Inn as a volunteer this morning. So expect kitten pictures from time to time!
Hugs to all,
Terre
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Patty and Carla hoping you are getting better and sending you hugs like dlb said my issue is nothing compared to what you're going through but I do ha a scanxiety as I'm getting a Ct scan in an hour and a bone scan tomorrow plus I'm worried about my dad who is very ill right now
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Auroya, sending positive vibes for your ct scan and bone scan and so sorry to hear your Dad is ill, praying for you both.
Deanna, hope all went well with your blood work and that your veins weren't playing hide and seek.
Patty and Carla, sure hope you're both starting to feel better!
Terre, I'm sure you're having a nice day volunteering at the Kitten Inn! Can you take pictures? Enjoy ☺
Hugs to all, Annie
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Well it's 3 days on antibotics 3 x a day...have been home...sorry I worried you all...they didn't want me in the hospital..due to how infectious it was...wouldn't be good on the OC floor...So I have no more diarrhea.. they pain level is low...it was very painful...I start Halaven...I believe they told me last week...but I had my CAT scan Monday...may have changed...see my NP tomorrow...OC is at a conference...but has been calling me every morning...He is so nice to me..and cares... and my NP she is totally awesome...They want me to finish the antibiotics before they start me on any probiotic...I have been eating Activa yogart...highly recommended...Let's just say I feel about 50% better..but still very tender in my lower abdominal area...and it doesn't help I have a colostomy too...
Thank you to all..I never can remember all your usernames/names...but you all know who you are and those that support me and reach out...I don't know what I would do with out you all...Love to all Carla
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So happy things are looking up for you, Carla.
How are you doing Patty?
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OK been approved for Ibrance, with only $4500.00 co pay. Ideas please!
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Glad you're home Carla!
Auroya - hope your scans go well and have super good news results. So sorry your dad is ill; sending positive thoughts his way too.
I had a blast at Kitten Inn! Didn't take any pics today, but I know I will in the future. Wanted to make an ok impression today and look like I was there to work.
Got to hold some 8 day old kittens, try to wrangle four 8 week old jumping bouncing kittens into a carrier so I could clean their cage, got sat on by multiple cats while waiting for the other volunteer to show up, got to feed Harley (see below), and got to repeatedly feed the 16 year old cat who looks like death warmed over, but who still eats like a piggy and loves cuddles. Harley is the one I wrote about a while back. At 3 am on a weekend night, a big biker dude was pounding on the door at Kitten Inn. Susan, who runs the place, was a bit startled, but the guy pulled this tiny kitten out of his coat. Some drunk girls had been tossing it back and forth, and he "took it off them." And delivered the kitten to Kitten Inn. He gave Susan $100, declined to leave his name, and roared off on his bike. Hence, Harley the kitten. Harley is tiny. You can't imagine how tiny. She's now 14 weeks old and fits in the palm of my hand. And climbed up my leg and tummy and proceeded to sit on my boobs and take a nap.
Darn hard to be anything but happy after even an hour at the place. Other great moment was a fluffy ginger tabby who raced into the room, tail all fluffed up, then suddenly sat down and began trying to lick its back toes. Failed. Did a head over heels barrel roll - twice - then got up and raced off again. Beyond adorable. And no, I didn't adopt any of them. Also got to see the tabby I rescued and he's settled in nicely. He's playing, let me pet him, and looks great. He's ready for adoption; he's been fixed and has his shots and microchip. All in all, a great day!Post about Harley for those who have FB.
https://www.facebook.com/LorenzoTheCat/posts/76862...
Hugs to all,
Terre
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Patty, How are you doing, sad to hear that you're back in the hospital. I had C dif when I was on chemo, not good at all. I hope they get it cleared up for you.
Carla, Good to hear that you're feeling a bit better, hopefully on the road to recovery.
Auroya, Did your scanning go ok? I get nervous too, but nothing a little ativan won't take care of, ha ha! Worrying about your dad sure doesn't help. Fingers crossed that all is well.
Romansma, I would be interested to hear how your treatment goes on Ibrance.
KCM, love the link to Harley, sounds like you are going to have a great time. It would be great fun to volunteer at a shelter, unfortunately we don't have one in our small community, probably a good thing, I would be bringing half of them home with me.
Hope everyone else is doing good. I seem to have gotten some rotten allergic reaction to spreading some moldy bark mulch yesterday, my throat is really sore & scratchy. I hope it's nothing. Cheers, Dee
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Myra, I don't know how anyone could possibly pay that copay. Have you talked to your doctor about it? Maybe it is too new for th e doc to have samples, but it is a place to start. Then maybe he/she can hook you up with some organization that helps in these situations. I would certainly make donations, but it would be only a drop in the bucket toward what you need.
Terre why does Harley not grow? He'd be perfect for me, but still mom would not let me have one. It's a great story and one that ought to be retold often. Once you have established what a dependable person you are, I look forward to an occasional kittie picture.
Carla, I'm glad you are feeling a bit better; and Dee, I'm sorry you are feeling worse. I, too, hope it's nothing. Cheers.
I'm sorry for those I missed. I do think about all of you every day and pray that we all are given time to live well and to keep trying the new drugs that come along to help us.
I go for my "sim" today. They will mark me and make my form, along with whatever else is involved just prior to starting radiation. I hope this will help me feel better and allow me to do more (carefully and gently of course). My jaw and lower right quadrant of teeth (except the far back ones) continue to be numb and somewhat painful in the jaw-mandible area. I have a few antibiotics. I may take them. I am doing whatever I can think of doing that might help.
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Myra,
Contact Phizer---who makes Ibrance. I have heard some are getting this much cheaper. It's going to take awhile for all Ins. companies to bring the price down.
PatientResource.com has some pages of financial & pharmaceutical assistance contacts. Here are a few.
Patient advocate co pay relief-- 866 512-3861
Partnership for Prescription Assistance 888 4PPA-NOW
Needymeds.org
National cancer coalition 919 821-2182
First check with your doctor's office. They usually have someone who is knowledgeable about getting funds for treatment.
Terri
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thank you, thank you all
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I will let you all know what my investigation unfolds today. I am thinking much clearer now that the shock has worn off. I am so grateful to you all.
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hi GG and kiwi and all of you for thinking of me and my father. Yesterday CT scan went well except later in the day I had tummy problems probably related to the chemicals I drank.
Right now sitting in the hospital cafe waiting for bone scan and after I'm done here off to my eye doctor. Puff! Exhausting job this having cancer!
Tomorrow off to Cancun! Yey!
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Wooohooooo! Have a blast in Cancun!
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Hi ladies,Myra - hope you have success in obtaining Ibrance.
Auroaya - Have a great time in Cancun! I'm counting the days for my trip to Cuba - I leave only on the 22nd of March.
Carla - you must be happy to be home. Sending you healing vibes.
Patty - What's up? Still in the hospital?
Dee - I forgot to remind you regarding the Aredia dosage. It must be my estrogen starved brain...
I'm feeling quite depressed these last few days with no legitimate reason. I had a CT scan on the 19th of Feb. Seeing my Onc on 18 March for results (we don't have online results here). I feel a big grey cloud over my head which is not unusual when awaiting results. Anyway, I know that if something is wrong, my Onc will let me know before my next appt. The nurse called me on Tuesday - when I heard her voice I was expecting the worse. Well it was just for more blood tests. The scan results were not in yet.
Linda
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oh my Linda, you have to wait a month for scan results. I would be freaking out. Maybe the weather is causing you sadness. Many years ago when I lived in NJ, I was sad so much of the winter. Please accept some of my Florida Sunshine, I hope that puts a smile on your face!
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Linda, that seems like a very long time to wait for scan results. It's no wonder you're feeling down. I'm so sorry you're going through that, but I'm glad you shared your feelings. I've been feeling somewhat the same way about the bloodwork I had yesterday -- anxious in the days leading up to it, and now finding myself forgetting to breath as I wait to get the results. It's a terrible way to feel, but I hope knowing we totally get it helps you some.
I hope everyone else is doing better today -- especially those with issues above and beyond bone mets -- Patty, Carla, Dune and anyone I might be missing by name.
Romansma, did you get Ibrance today? We're all rooting for you!!! Deanna
PS ~ Terre, re. blood draws -- 5 attempts was my worst experience, too. In fact, my worst experience was 5 back to back -- 5 attempts one day... sent me home to hydrate... then 5 unsuccessful attempts the next day (for an IV), which is why I really get stressed about blood draws. But I have come to the conclusion that the problem isn't me -- it's less experienced techs. So now my rule is you get 2 chances and then you either call the head honcho of the dept, or the appt is over. Yesterday after one unsuccessful stick, I showed the tech how to position my arm a certain way I've had the best techs do it, and it worked! She got it on the 2nd try!
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Myra - yes I accept your Florida Sunshine and it did put a smile on my face! Winter blues. It's cold, icy and slippery and not enough daylight. Milder weather is in the forecast.Linda
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