Bone Mets Thread
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YaY!!! Great news, ML!
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Hello everyone,
Linda, Dee, Dunesleeper, Deanna and Terre, thank you so much for your prayers and good thoughts. I had some major anxiety today and like MusicLover I had a bit of a meltdown. I just felt so scared and it seemed as though they had done things differently so my mind was spinning with questions. They scanned me from head to toe but then they said they needed to take a couple more pictures and moved it to my chest area, sort of on an angle, first on my left, then my right. I came home crying, the anxiety of it all just got to me.
MusicLover, yay to stable, doing a happy dance for you and I would love for you to hear NED someday real soon.
Dee, glad you're feeling better. Praying your next infusion brings you no side effects.
Terre, whether it's real or placebo, yay to you feeling good. I had an energy healer I worked with for my MS. I believe it's the reason I've done so well with it, he helped me through some pretty horrible stuff. He has moved over 5 hours away and I feel lost without him.
I can't remember who else was having a scan today? Shutterbug73? Prayers for good scan results and positive news.
Hugs to all, Annie
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Yay for the stable boy MusicLover! Doing a happy dance for you!
(And thank you everyone for the good wishes for my scans on the 10th. I want so much to answer everyone in the thread, but my iPad does not play well with this site if I scroll back when posting. I keep losing half written posts)
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Annie, sorry to hear your scans were so stressful. They are probably just being extra cautious. Will be thinking of you and hoping for great results!
Edited to change sleet to sorry. Autocorrect makes me sound like an idiot
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Oh Musiclover, that is wonderful!! Annie, having a meltdown isn't good, I've only ever had 2 bad ones, & I don't know about you but it's not like me, I can usually hold it together. I hope you're feeling a bit better now, but totally understand if you're still upset. They always do extra scanning on me, at first it really bothered me, but now I just take it as normal. I hope it nothing to worry about.
Shutterbug, don't worry about answering everybody, we all get that sometimes it's just not plausible especially if it's a new page. I think we all know that no one leaves anyone out intentionally.
Cheers to all, Dee
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Thank you. Annie, Praying your scan is good, great in fact.
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Hooray to stable! (So tempted to put in a bad pun of some sort about not horsing around, just stable). Very happy for you!
Annie - so sorry you had a meltdown. But sometimes, one is just needed. I'm guessing they're being extra cautious and vigilant because of your radiation treatments and they want to make sure they get a really good look at everything.
Shutterbug - LOL @ autocorrect and idiot. My former work phone autocorrected my name from Terre to Terrestrial. And sometimes I didn't catch it. When I can't get my name right...well...idiot R us. Of course, the damnyouautocorrect site is one of my favourites. It leaves me in tears of laughter every time. Sending good thoughts for your scan.
I'm sure I miss people/posts all the time - no harm or disrespect intended.
Hugs to all,
Terre
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music lover, hooray for stable. Now take a deep breath of relief and treat yourself to something fun. Best wishes for everyone else in the on deck circle for scans. Oddly, I never get nervous before or during scans. It's the waiting for the report that unnerves me
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Terrestrial Terre. LOL. I'm glad dh is feeling better and hope y'all find out the problem soon. The not knowing is hard. Also I'm glad your energy session went well. It sounds like it went a lot better than my massage today. Gawd I hurt!!!!
Annie it sounds like you had a very thorough scan. Meltdowns suck but thorough scans rock. You can have confidence in the results.
To everyone else out there struggling with fear or pain I am sending out prayers that this stuff gets easier.
I, too, am working on a smartphone that gets pretty dumb if I try to maneuver the site while posting.
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Music Lover I'm glad you got stable results. Stable is really good. NED is awesome, but stable is really very good.
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Annie, i hope they were at least nice working with. When will you know the results? Best of luck
KiwiCatMom- what a woman you are! In my home, e/o is always askg me how i do it, shopping, taking care of e/o needs, hubby just had spine surgery, keeping up with Dani, my daughter's every step, yep, i'll tell you, i know if i fold, it all collapses, that's the whole secret. We are the glue, period.
Music Lover, i love meltdowns, they are real, and you have earned it. Stress is stress, Great to hear good news about ur results!S
Exbrnxgrl- i know what you mean about waiting for results, on of the things i do, is ask the radiology place to also fax results to Fam. Physician, he has longer hrs than the onc, and we could call him in the evening if he got the report or on Sunday and he'd tell us, so we should not have to anxiously wait till the next bus.day. Just a thought. It has helped us.
So today, was decided that Dani will have Gamma Knife Radiosurgery to the bone area behind her eye, for awhile i thought today she'd need surgery, but this way is much better. They have to schedule it still. And she will finally have some radiation to the femur bones. She is continuing on Abraxane, and still waiting on the bone biopsy results. Meanwhile, i'm gathering her original biopsies slides, and all CDs, and prob take it to Sloan, and the onc is calling around many different places and different oncologists. I've been hearing not such nice things about Sloan, we have a good foot in the door there, i'd for sure go for an opinion, but i'm told they are not so patient friendly, more businesslike, and we are not used to that. (Just saying, of course i'm not changing great outcome for friendliness, but she's been through so much and being so young, yes, i'd like a caring crew, what can i tell you). We shall see.On the other hand, Anderson and Dana Farber have a very warm crew, but they are further out for us. Maybe we'll luck out. Let's just say that they find her case "interesting" ( never good). and, i'm still waiting to hear from other NYC places. We need fresh outlook, she's been almost on everything already, all the treatments haven't lasted for more than a couple of months... Yep. Insane!
Take good care everyone.
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MusicLover,
I've only had one PET scan but my husband and I were both a nervous wreck the night before my first one. i think I understand what you''re going through. Please know I also live this anxiety and try not to think about it or it will ruin the life I have left to live. Please let us know how it goes. We're all in the same boat on here and if anyone understands we do.
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Oddly enough the people who post my results and the lab people must work late hours. I still do not have my PET scan report but my tm's were just posted (I am such a nut to be looking at such a late hour but over the course of the last hour more & more lab results were posted - btw blood was just drawn today at tx). Ok, here is the good news (I think it is good news) my TM's dropped again, now they are at 29. I can't help wondering if Protocel is working for me. I don't blame you all for being suspicious because honestly I am too, I won't be truly certain for years to come but I am happy about this and wanted to let all of you know. I am absolutely still on femara since Oct 2013 but remember what I posted here: last April my TM's started creeping up and PET scans showed progression in July, so in August I added the Protocel and so far so good. Thank you all for your good thoughts and I truly hope that we all find something that helps us get more time with our loved ones.
Edited to add: I think I get panicky with the PET scan because I am left in solitary there in a cubicle drinking that sugary drink for an hour and then @ another 30mins in the scanner. I did a puzzle in the cubicle but it was not enough of a distraction and I can't bring anyone along with me. In the tx room it is busy and a good distraction so I don't panic there. I need to figure out how to distract myself better when going for the scan. I'll figure it out eventually and absolutely no music while I am in the scanner that will trigger a happy memory from the past, sounds dumb but that's what pushed me over the edge.
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ML, so happy for stable results! And that your TMs are down, that is wonderful. You have reminded me that I had TMs done a week ago and forgot to check the portal after the first day.
Annie, please let us know when you here, praying for stable or NEP.
Weekly chemo tomorrow for me then in theory two weeks off, yay.
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So glad your tumour markers are down ML! Great news!
Reading-good luck with chemo tomorrow and hoping you get your break from it.
Hugs to all
Terre
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Terre - Chuckling at your autocorrected name story reminded me of another. I used to work for a huge company and a company-wide email went out about construction that said "sorry for any incontinence this may cause". Needless to say there was some laughter-induced incontinence all around!
ReadingLover- Enjoy your chemo break!
Momallthetime- will be keeping you and your daughter in my thoughts. Hoping for good results from treatment and useful information from your second opinion, wherever you choose to go.
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Thank you to all of you for your words of encouragement. Dunesleeper you're right about thorough scans and I am grateful.
Momallthetime the staff are delightful to work with and try to make me feel comfortable. I'm hoping to get my results this Friday when I see my MO after my pamidronate infusion. Praying daily for your daughter to get a successful treatment plan in place that brings healing to her.
MusicLover, that is awesome that your tumor markers have dropped again. This all seems very encouraging and I couldn't be happier for you!
My 2 weeks of radiation to my bone mets ended December 12th and I am experiencing some really bad pain in my humerus. I thought it would have subsided by now but it hasn't. Does anyone know how long the pain after rads can last? The strange thing is before rads I had no longer had any pain there so it has caused something to flare. My MO attributed it to the pamidronate doing its job. The sternum issues seem to have resolved as well as the rib. Just my humerus and L5 with lingering pain.
Shutterbug73, your post gave me a chuckle. And Kiwi now I can't help but think of you as Terrestrial Terre
ReadingMama, praying hard for you to get a break from chemo! Hoping it's been gentle on you.
Hugs to all, Annie
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Lol@Annie - one of my former coworkers started calling me ET because he said I'm not just Terrestrial, but Extra Terrestrial.
Shutter - love the incontinence. Too funny!
These weren't autocorrects, but were also funny:
- A friend of mine worked in retail and they got a notice that said : Starting immediately, monthly reports must be submitted daily. Daily reports must also be submitted daily.
- I got a CV/resume from a computer hardware guy who said "I have over 10 years of experience as a hard dick specialist" (instead of disk). Needless to say, all the women in the office wanted to interview him.
Have a lovely day!
Terre
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Hi all,Annie, sorry about your pain. After my first round of rads to pubic bone, the pain lasted 2-3 weeks before it slowly subsided.
I have to share something with you all. Just came back from my ortho appt which was requested by my MO following xrays to pubic bone, pelvis and femur. MO wanted ortho's opinion because I was planning a trip and because the radiologist's report said that there was a high risk of fracture to pubic bone and barely no visible bone tissue in that area. Radiologist also said there was a met on hip bone unchanged since July, BUT was never mentioned before in any previous report. As soon as ortho read the report, he said "oh no, not him", talking about the radiologist. He then looked at the images which showed no met on hip bone and although pubic bone is badly damaged with a pathological fracture, it is unchanged from previous tests and bone tissue is very visible. He showed me the images as I was quite surprised and confused and questioned him again and again on the radiologist's report. Ortho told me that radiologist is on his way out and it's time he left!!! to which I replied I hope he's not going to another hospital. Apparently, it is the end of his career. Unbelievable! What incompetence!
But it doesn't stop there. The report for my last bone scan (not the same radiologist) says unchanged activity on L1, BUT again was never mentioned on previous bone scans or CT scans. So MO sends me for an xray which was done this morning. Ortho sees a lesion on L1 but is not sure what it is, so is asking for a CT scan. He then looked at the images of the last 3 bone scans and tells me that L1 has more activity and is bigger than previous ones. I'm waiting for CT scan appt and ortho wants to see me after. This is mind boggling or am I over reacting? Anyone else facing these issues?
Linda
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First Terre, omg you seriously cracked me up. My daughter came running out of her room to find out what I was laughing so hysterically at. Thanks, that was much needed and I'm still chuckling. No wonder everyone wanted to interview him
Linda, I can't imagine how frustrated you are knowing your scans were being read by an incompetent radiologist. That being said on the positive side things weren't as grim as initially reported but the surprise of L1 must have you reeling. Same happened to me when my MO neglected to tell me of the activity in my humerus when I had been complaining of arm pain. Then he sends me for an x-ray and is freeking out cuz I have a rather good size hole there. Are these guys over-worked? Then last month I show up for my pamidronate infusion and my onc had me down to receive chemo, eribulin to be exact. If I see him this Friday he is getting a piece of my mind! Praying what they see on L1 is not a met! Positive thoughts going out to you.
Hugs, Annie
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Linda - how awful for you! That's soul destroying to feel you can't rely on the radiologist, MO, etc. You're not over-reacting. If it were me, I'd have a heart to heart with the MO and tell him about your concerns regarding the screw ups and varying opinions. My current MO mentioned to me that if I switched to him, it might hurt the previous MO's feelings and did that concern me. I don't like hurting people's feelings. I try hard not to; however, at that moment, a switch went on in my head and I said "no, if it hurts his feelings, so be it - it's my life we're dealing with here and that's more important than his feelings." So keep that in mind - you have every right to be angry, upset, etc....it's your life they're messing with and you have a right to have good care and to have your questions answered. I'm so hoping the L1 isn't anything to be concerned about. And I'm happy for your good news regarding other mets.
Annie - glad I could make you laugh. My role in life is comic relief.
Hugs to all,
Terre
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terre- lol, that is so funny!
Linda, how scary to deal with incompetence I just go to the hospital and assume everyone knows what they are doing tho after your chemo scare, I know look at the names on the bags You don't even get a say in which radiologist reads your scans, at least I dont ((((Hugs))))).
I should clarify that I'm not really getting a chemo break, im just on a two week on, one week off schedule still, it's nice to have that week with no chemo
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Music Lover you are doing something very right so keep it up girl. I will probably look into this protocel thing. For now I'm drinking lots of Berkeley Springs water. Native Americans attributed healing properties to it. Heck. Why not? Best wishes to all.
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Congrats Musiclover on the stable scan reports. Wonderful news. Glad you can relax a bit now.
Terri
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Linda, my daughter, Dani, had this happen with her. She's been going to the same radiology place forever, and about 3months ago, her onc had a fit while Dani was sitting there. She called the radiologist and gave him hell, because he commented in the report something like - ...enlarged from the last time - an she was like, what?! there was no mention of it the last time, the next scan was sooo detailed it took 4 pages.
No one should have to go through such incompetence, if the kitchen is too hot they should get out, and not jeopardize peoples lives, literally. The MO should know where not to send patients. Glad, you were able to get it straight, and it was for the better. Terre-.You go girl. Well said, sometimes they will respect you more, if they see you can't be pushed around, it may be hard, but worth it.
Guys, i just got a phone call from the onc, she said that her HER2 status CHANGED! it's now Her2+ and maybe that's why the chemos(many,many) were not working!!! She is getting her to come in TOMORROW to start on Herceptin and Perjeta and continue on Abraxane. Insane or what? Yes, in a way it's good news, because at least we could assume that that was the reason she's been progressing so fast, so in this ridiculous comedy we are happy that it is another cancer type?- well if just to get that one nudged out, what shall i tell you. Beggars can't be choosers.
And she is scheduled to get Gamma Knife on her sphenoid bone, beginning next week. Did anyone here have Gamma treatment? How did it go?
Thanks Shutterbug7 and Annie and all of you for your support, you are quite a bunch.
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momallthetime, I have no experience with Gamma Knife but I think being her2+ is good news from everything that I have seen. I pray that Dani has wonderful success on the tx available to her.
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momsllthetime,
Change of hormone status is not unheard of, so it's good that they found out and it can be properly treated.
Dunesleeper,
Do a search for protocel. I think there have been some discussions of this product on a few other threads.It is usually sold through MLM type ventures. It also goes by a few other names such as Entlev, Cantron and Cancel.
Take care all
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Hey, MusicLover thanks so much. I was thinking for you, is an Ipad an option? Dani takes it to her appointments as if it were a Bible
And i so get what you said about a song being a trigger, just reading brought me some memories, and made me tear up, it's so so true. Good luck.0 -
Thank you ladies for your comments and feedback. I've already sent an email to my MO stating the facts of what happened today at the ortho. I'm seeing her again on 27 Jan and I plan to discuss all this with her and hopefully I'll know what L1 is up to.Dune - I received the Protocel and decided to ask my pharmacist to take a look at the ingredients and see if it is compatible with my medication. She's always very helpful with this kind of thing. Should have done that before ordering....
Linda
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Thank you momallthetime, I was thinking about that too, an ipad or something that would be a true distraction. I wish that they would let someone sit with me, when I had a PET scan at a different facility they allowed that. In the treatment room there are so many people around that I am ok in there. Memories are good but difficult too.
Dunesleeper, Good luck with the spring water. There is a lot of information about Protocel online. Sad thing is I think I will never be happy again, no matter how great my TM's are or my scans, life has changed for the worse and I truly hate it. I am feeling the after effects of the Zometa infusion right now, at least I think that is what it is, and it has not been a wonderful day. I can't even imagine what I will be like when things get more difficult for me. (Praying for a miracle cure for all of us, I read something about that anti-cd47 and it said it may take 30 years, well, I truly hope that if they have success with it in the clinical trials they can fast track it.)
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