Bone Mets Thread
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Love, love, love all the pet pictures !!!...I'll have to get busy and post a picture. Hope I don't gross anyone out with this...I was at work at the hospital this evening and found a tick in my hair !!!! Yuck !!---of course I thought the worst---add Lyme disease to Breast Cancer. I finally bagged the little guy up and took him to the Emergency Room with me !!! The wonderful MD there decided it was a regular wood tick instead of a deer tick and I shouldn't need any prophylactic antibiotics. So much for all the gardening this spring...I have been outside planting flowers like crazy...kind of my celebration of surviving Stage 4...last year at this time I thought I would never be gardening again !!!
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happy to hear about your scans Micmel and happy to hear about your time time at the regatta Wendy soaking in the sun and power of rowing, Sorry to hear about nausea Babs and the possible liver growth. Dang it. I want Gemzar to work for you too.
Loving the photos.
Here's Max. When I pick him up from daycare an announcement over the intercom makes me smile: Max Powers, Max the Beagle is going home.
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Hi there Max the beagle. You aren't as glamorous as I would expect from an LA dog, but you are an awesome beach dog, I see.
Babs - I would be very hesitant to switch treatment so soon. The size of tumors can vary in scans by +/- .5 centimeters on scans taken the same day. Scans just are not that accurate and there is a lot of inherent variability. So if there is a small increase, that is easily the reason.
Also, tumors can get larger when they are inflamed and breaking up ... as the sometimes happen very early in a chemo treatment protocol.
Usually they wait longer to evaluate treatment, but they scanned you early because of the pain. I hope this early scan does not trip up your doctor's thinking process. I would certainly get a second opinion before switching treatment.
Very interested in what you learn from the scan report itself and what you decide. But I believe that time will tell that Gemzar is working and this scan was a red herring. Unfortunately our diagnostic tools are weak.
Mom - I keep doing CEA even though it is not the best TM for MBC. My doctors don't actually order it anymore, I check the box secretly after I get the lab order, just because I am curious. My CEA went up from 3 to 4 in the last lab order, which corresponded to an improved scan. The CEA is the least reliable of my unreliable TM's. Hugs while waiting for scans. It's awful waiting ... and then you get the results and even if they are good it's just a different awful.
>Z<
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wendy. Yes. !! Good news indeed. I am doing the happy dance for you.
So it's official, I a! Now in my new place. First night. Good news is I am so exhausted from the move that I don't think I'll have any problem sleeping
Hugs
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Patty -YEAH! This is going to go well... so glad to hear from you.
>Z<
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Patty YOU DID IT BABE!!! How wonderful!!! Have a great night! Well deserved.
Micmei Zar Gracie, thanks, I know all you guys are there. Gracie, why don't they just snap these annoying thingys? Only if it's painful i think.
Love all the dogs, it's so nice to know how much they mean to everyone
We found out this evening that this new insurance D is on, is refusing to authorize Pet/Ct which she has always done. First off, she is way overdue, they only want to ok a CT? Really??What are they crazy? Messing with someone with such History? I am beside myself. And also, what would they compare it to? It's a different info from what they had, the last one, was a Pet/Ct. I am so scared we won't have the right info. Gonna have to fight it out tomorrow. I think doc's office should be more concerned she should get the right scan and make some noise about it, not just ok their opinion. They said they had a peer/to peer? WTH??? I totally don't get this.
I'll leave you all with that, can we possibly just have all the info just from a CT? She never ever had just a CT. Should we pay out of pocket? Would they allow it? Tomorrow she has to go in for the last infusion of this cycle. But the Pet/ CT was scheduled for Thursday. We need to know if this trial did anything for her?? Don't they understand this? The Onco's office?? they are so blase about it, like, ok NEXT!
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mom all time. How scary. My mo has said the last few times he was surprised Medicare is still approving pet scan for mets to bone. He said new standard for Medicare is ct for mets to bone. So far they haven't denied it but sounds like it's coming. Boo. I prefer pet since it can't detect things so much sooner. And sooner is definitely better. Sending peace to you both no whatever you decide to do.
Gm all
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Patty & Mom~ I agree with you about the Medicare issue for the Pet scan. I was told they have a lifetime limit, for pet scans, and they aren't kidding. I think it is 3. If you go over that amount they will so generously send you a bill for over 2K$,without even telling you they won't approve it. I had it happen to me and I had a heck of a time fighting it, ended up I had to have the oncologist step in as a medical necessity, get the pre authorization before hand so yourenot saddled with a hearty bill you don't even know, is on its way, until you get it. Hope it turns out well for you and D, glad you're in your new place patty. I hope you're very happy there!! ~M~
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Micmel - Belated congrats to your great news!
Babs - Thinking of you and hoping you get your answers.
Patty - WOW! So happy you moved in, still don't hesitate using your supervisory skills!
Still mostly lurking but keeping up to date. Brain and C-spine MRI is finally going to take place tonight and US abdominal tomorrow morning. Tongue is still swollen but headaches are better controlled. Last week's labs show liver ALT doubled and CEA went up from 22 to 56 in a month. Keeping my fingers and toes crossed that ALT increase is caused by new meds that can be harsh on the liver (Fas, Prednisone and Decadron). MO is considering Taxol as next tx depending on outcome of tests. Not sure I'm too keen on Taxol, will have to do some serious thinking if it comes to that. Those of you on Taxol now or before, can you please step up and let me know how you tolerate it.
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Linda~ I had abraxane instead of taxol because I am allergic to steroids and taxol and steroids go hand in hand. It was rough on me I'm not going to lie,my hair fell out and I am still loosing my fingernails as they try to figure out what has happened to my body. It was aggressive chemo and I already told my family if they mention anything aggressive again I'm out!! I can't go through losing my hair a third time. It killed me and made me feel un womanly. I already only have one breast, I don't want to add to the carnage. It's a personal choice I believe. I hope you improve! Gentle hugs ~M~
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Linda, I only had taxol once and I was one of the 2% that have severe hypersensitivity to it. Had to have it stopped and be given emergency meds. However, my mother and most people do ok, she had temporary hair loss, brittle nails, mouth sores and taste bud issues towards the end of treatment but once complete everything was resolved. She's 64, worked (her own business) through treatment and a year later is doing well. Also, I recall seeing a weekly taxol group, might be good to peek in.
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Loved all the fur baby pictures. I truly miss having a dog but living in the city it wouldn't be fair. Especially since I work f/t and we have a very active social life.
Momall. Your MOs office needs to do a appeal about the scan and to try to get it presuthorized for Dani. A peer to peer is when the insurance company's dr speaks to your dr. Most ins drs really don't have great knowledge about things so Danis MO must be insistent on the medical need for the test
Linda I'm glad the headaches are better. I was on Taxol and found it relatively easy. PM me with any questions you might have. For me the worst se was losing all my brows and eyelashes but I did microblade brows so it wouldn't upset me!
Michel. Please celebrate your good news! We all need to celebrate every small win when it happens
Patty so happy you're settled in! Hope you love your new place
I should have my scan results today. My MO is not changing my treatment now. She said it's too early. But she will be keeping a close watch on me. My TMs have been rising quickly. But last time the jump was 1/2 the time before. So we stick with Gemzar for now. Maybe it's just starting to work!!! Fingers crossed.
Funny my DD found out last night about my ER visit from my doorman. She said her DH asked what was wrong with me Friday night. He said I looked soooo tired. Such a great young man!
On Sunday her bf said that he's looking to move to the US so my Dd can be here for me. That is very important to him-
Will report once I see the scans later !
Babs
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a big hug to Max the cutest beagle. I showed his pic on the phone to our dog Harlow and she showed definite interest. Lol.
Micmiel Interesting fact about the tumours breaking up. My Onc said last week that sometimes the scan summarative report done by a regular Radiologist reads quite diff than an Oncologist Radioligist who looks at it. She told me my report said my mets were getting worse when in fact she said it was actually healing and showed scar tissue. Where I live they also have a tumor board so every 3 months they meet and discuss scan results and the success or not of a particular drug a person is on. It just gave me more confidence in my treatment plan.
I just love the pics..adorable !
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LindaE, You will be in my thoughts, and I will be with you in spirit as you have you MRI and ultrasound tonight and tomorrow. Will they get the results to you quickly? I am hoping that your increased ALT and CEA are a reaction to your new meds. I do know that increased liver enzymes are listed as a SE of Fas. Maybe the increased CEA is from dying cancer cells. I have never had taxol, so I cannot give you any information about it. You remain in my prayers.
I love all the pictures that have been posted. Keep them coming.
Patty, Congratulations on your new home. Rest up for a while so you aren't exhausted. Don't forget to stay hydrated!
Mom, I know how aggravating it is to try to maneuver though the health care and insurance systems. There are often obstacles thrown in front of us. The CT scan could show all the MO needs to see. If not, I hope that he or she pressures the insurance company to approve the PET.
I am on clear liquidstoday to get ready for tomorrow's surgery to fix my kidney. I am trying to pretend that the broth I am drinking is a delicious steak dinner.
Hugs and prayers to everyone. I hope for good scans and tests for all who have them this week.
Lynne
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Good morning Linda,
KD had a good run on Taxol. The trick for her was to figure out when the worst of the SE's would hit. She always did chemo on Mondays, so the fatigue would start hitting her Wednesday night. By Friday morning, she would be feeling better.
She had a good run on it that was shortened, I believe, by two major surgeries right in the middle of it. The first surgery in September was to fuse the C4 - T4 because of a compression fracture at T2. The second in October was was a "flap" surgery after her original incision opened up. Because of these, she had to miss numerous Taxol treatments. It just leaves us wondering "what could have been?"
Just like any other treatment, I think you will find that each person's response to Taxol is individual to them. Hoping for the best in whatever y'all decide.
Louis
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Thank you all for your input re Taxol. This site is incredible in terms of info and support. I am also one who said no harsh chemo! But who knows right? I may be jumping the gun here but I want to be prepared and do my homework for when I get results. I still welcome other experiences so keep them coming please.
Lynn - Enjoy that pseudo broth! I wish you the very best tomorrow. I sure hope to get results quickly, MO called on Saturday night and ensured me she will personally go see radiologists when imaging is ready.
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Lynn~ picture us all in the waiting room just to hear everything went well. I am keeping you close in prayer and look forward to your healing. Good luck and we are all in your corner. Hugs ~M~. Try to enjoy the steak!!
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Here's my animal picture...
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Linda finally~!!!!! if you could tell your medical people that you had to wait for so long, even more due to the mess up, they should make all effort to get you the results asap, you should not have to wait a whole week. Maybe you could call them today and remind them you are having the scans today, they probably don't remember, and like this you advised them, and could be fresh in their minds.
Lynne hope for a quick recovery for you. What exactly will they do to the liver? When are you expected to be back home?
Babs at least you got some clarification. Glad you are on track. What about the pain? And yes, doormen, oh boy I am sure they could tell so many stories, they've seen it all. Nice to know he has an eye on you.
Micmei unfortunately i've seen very few doctor's offices fight for you. Our PCP does.
It's bad enough to have to deal with nature, but someone's whim?? and, yes Babs some of these ppl don't even know what a Pet scan is.
Abraxane was easier on Dani, well she was very upset that the little hair that was growing back would come off again with this trial she was on, but it would have been this or taxol so it did not matter. She bought a gorgeous expensive wig, her insurance actually paid for some of it, and she bought separate bangs from the internet, and a wig that comes with a band, she puts the bangs in the front, she spends a lot of time on make up, and out she goes. She was very upset at first, but once she embarked on it, it's a nonsubject.
Never a dull moment. Let's see what she comes home with.
Louis, I remember when you were telling me of the spine surgery, I was dreading it for D, and the lack of tx...Yeah, now let's get some good news on KD's improvement.
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Taxol to me was a breeze after dose dense adriamycin and cytoxin. I did get mouth sores and had food sores, some nausea, lost whatever hair I had left. But it was doable. I could not take dexa...that about killed me. So they used prednisone instead. But I still felt the taxol was easier
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cive..love the animal pic...We re all dressed up for the photo moment. Here s our whole fur baby family. ..
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I'm loving all these furry friends! Puts a smile on my face! Thanks everyone!
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Adorable!!! And to think it all started with my dog getting his head caught in in the trash can lid! Lol please keep posting. It really does make me smile! Max doggies day care summons precious lol too funny. I know this is the bone mets thread and boy do I know that I have them, but this is part of our happiness and our everyday at home while fighting this awful disease! Hugs to all and their furry friends. We need more cat pics too!! 😁💜 to all! ~M~
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so adorable Nan812 ! It s all about heart to help us through the day
This is blood work day to check my calcium levels before injections on Thurs....Wanna guess who jumped in the car too wanting to ride shotgun! Lol Too cute not to share with you all . And he waited patiently until I came out again
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MCK~adorable co-pilot!!! Hope all went well with the blood work ! Hugs ! Nan~ Cute little heart nose. I wish I was that cute lol ~M~
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Linda: I also had Taxol following the Adriamycin/Cytoxan cycles and for me was fairly easy to tolerate. I remember my hair started to grow back during the Taxol treatments. I did have fatigue and still have some neuropathy in my feet....Acupuncture really helped with that
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loving all the critter pics nice that we have our furry friends. Your right Babs after selling our farm and moving to the city for treatment my poor dog misses her freedom . We walk her a lot and I guess she has more to sniff but it's hard for her.
Linda I just had my first infusion of my second cycle on Taxol so still a beginner I guess. My first infusion I took all the pre meds Benadryl and steroids and was pretty sick during the whole week. Then someone said I should skip the pre meds and I might not get so sick. That went well for one infusion and I felt pretty good but tired and very dry mouth (keep a bottle of water around ). The third infusion two minutes in my face got really hot I mentioned it to the nurse an d she stopped the drip for a bit and I was fine. Then I had my week off . When I went in for this infusion yesterday it was really bad. Two minutes in I had a huge reaction my fwhole head felt like it was exploding and my eyes burned and I couldn't breathe. I was surrounded by all kind of medical people very fast and Benadryl and all the pre meds were given right then . Freaked me out I can tell you. They had an epiy pen right handy. After that I was fine made me sad to think how we need to trick our bodies in order to accept this poison . So please if you start Taxol take the pre meds. Other than that my hair is all gone and I have a bit of nausea which is resolved with a ginger gravol. But I'm feeling a lot stronger. Good luck
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Oh good lord Wendy. Hugs. I am thinking of you. I would like this to be easier.
>Z<
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OMG Sooooo scary Wendy...Lucky they had the remedy quick at hand. I'm so glad to hear you are feeling much better!
I hope the same for you babs and they figure out what is going on very soon. I'm glad they decided to stay the course on the Gemzar and give it a chance to work. Your SIL sounds like a sweetheart!
Good luck tomorrow Lynne with your kidney procedure. Will you have to stay in the hospital for very long? You and DH just trade back and forth on supporting each other and deserve a big break already. Starting with a nice dinner when you feel up to it.
Z, that is one cool looking cat, like a mini jaguar! My DH refuses to get me another cat but we have a lovely white lab Bella whom I'm adore. And Gracie, Al is just a character! What a distinguished fellow. I love all the pet pics too! MCK, what a brood! And Jen, Max looks like a cuddle pal, so cute!
Mom, My insurance just denied my PET too, said a CT and Bone scan should suffice. My Onc tried to fight it and said if there is any questionable areas on CT she will insist on a PET.
Linda, I hope everything went Ok on the tests and the tongue swelling has subsided.That has to be incredibly annoying. Glad the headaches are better though.
Patty, yay! I hope you feel at home and peaceful very quickly.
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