Bone Mets Thread
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Xavo welcome you will find lots of love and good info on this thread.
Bosch love Grease definitely a silver lining I hope you feel better soon and are out of that place. Your right look for the silver linings.
Leah thanks for the New year wishes very interesting I had no idea about this holiday to neat.
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Leah - Love your bucket list. Improved health, much love, much joy right back to you!
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Hello to all,
Bosco, glad to hear your cough is better but sorry to hear that you're in the hospital. Praying your, platelets come back up. I love watching Grease, brings me back to my youth too, I own it on DVD and dh hates if I put it in to watch.
Wow it's been a crazy day for me and I'm very tired. So the nurse thinks it's the Celebrex causing my symptoms and was suggesting going for a scope so they could take a look and see if I've developed an ulcer. I really don't want to go through that again, I've had one done before and it wasn't that pleasant. The other suggestion is to stop the Celebrex and see if things improve although she said I would probably be prescribed a different NSAID, and eventually they all cause the same problems. I see my GP on the 30th and will go from there. Today was a little better but I took some Gaviscon as well as my Pantiloc. Praying tomorrow is even better.
Hugs to all, Annie
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It took me awhile to look through all of your posts, you guys are such wonderful ppl.
Of course my best wishes for a great year.
Status here has been very dramatic. Scans are showing progression. Another scan, another progression. today was the neurosurgeon's turn, Dani is been complaining of some nodules, and lo and behold it has to be operated. He doesn't want to for it to get too large but...At the same time, we are changing finally Oncologists. This Oncologist is really bumming us out, such a disappointment. As our doc friend said, ONCO ran her course. I think she is either running scared or just plain got bored with constant progression.
Again I called attention to the results, it's just not gonna work. We are going to a very aggressive treatment, about 6 different types of Chemo in low dosages. We gotta stop this train wreck. We are drained from the bad news. She is starting next wk, and hopefully something will change fast. New Onco is very concerned, but he is known to be a cowboy, and we need one now.
LindaE, i know exactly where you are at. Such incompetence, i was telling my daughter it's a miracle more ppl are not dying.
Hope for a good sleep to all of us.
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I am praying for us all. Be blessed and sleep well ladies. The sun will rise again tomorrow
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wow again this thred moves so fast. Lately I have been reading more than posting. But the support here is very important to me.
Leah and Bluefrog I second your thougjts on bucket lists. Part. of. the bitter sweet nature of this disease is I realize I have exactly the life I want. I just don't want to give it up too soon.
Lindalou sending you. and. your husbad positive thoughts for. healing.
momallthetime Wishing you are able. to find all that you need with new oncologist.
Annie, I do hope your m edical team finds. good answers for your pain and GI symptoms.
Amy very cute g.pigs.
My question today is much. like gaia's. regarding hip pain. I have struggled with hip pain off and on since taking AI (extemestene) . But in the last two weeks. it is more acute. I. had been taking pain pills just at night but. in the last week started taking them in the day time. I had a good pet scan. in July. and a MRI. of my hip showing nothing but bursitus this spring. So do I call the doctor who I will see October 1st or just roll with. it till then. I have plenty. of meds. to keep me comfortanle but worry about progression?
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Mary, Since your scans were so recent I'm inclined to think that your pain may be Extemestane and you may be having a flare. Have you tried Femara or Amrimidex? I couldn't take extemestane because of pain, so it may be worthwhile to talk to you MO about switching to another AI. All three of the AI's can cause bone pain and achiness. Hot baths and or heating pads help too.
Annie, Hope going off Celebrex helps a little, and a GI series sounds like a good idea to take a look at your stomach.
Momma, You are a great advocate for your daughter. Hope you get some answers soon.
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Hi there...I know I don't post often, so this is really just to let you know how I'm doing, and maybe help calm the newbies.Just got the results of my latest CT scan and I'm stable again! I haven't had any progression since I was diagnosed about 14 months ago. No pain, no pain meds. I'm still recovering from prophylatic breast radiation treatment (I only had a quadrectomy), so I have a few sore spots, niggly nerve pains, some fatigue and a little lymphedema that I hope will improve as my radiated flesh regenerates. My monthly blood work is always perfect for counts, renal and liver function, magnesium and calcium. I still wish I could get someone to show me my films so I can see if there is any regeneration of bone.
So that's my good news. Business as usual...just one lopsided breast and a few faint scars on my back.
Gaia - I had a week of rads to my L4 (which was pretty chewed) and my T7, not for pain relief, but as a treatment suggested by my oncologist. Rads can actually make the bones more unstable at first, so they stablized my L4 beforehand with microsurgery that bolted the L3 to the L5. They left my rib met completely alone. The premise was that ribs, because they aren't load bearing, won't cause any real problems if they break.
Feeling unstable can also be from awareness of the problem. I had no idea there was anything wrong with my spine, and I walked normally. Once I found out I had mets and that the L4 was in such danger, I worried about falling, and for a while I walked awkwardly because of it. I also walked differently after the stabilzation. I found when I was in a rush, though, I'd naturally walk with a smoother gait and looser hips. I'm still cautious, and I always wear flats when I'm walking on bad surfaces because I've never had great balance. I'm also more inclined to sit things out if the surfaces are really, really bad (i.e. iron age forts and medieval castles...okay, I still do them, but cautiously!)
If you're getting more pain, it's also possible that it's a tumour flare from the treatment. I think 3 weeks is around the right time for that to happen.
Just to make things more confusing, I get muscle cramping from the Tamoxifen, although it's improving. So, your body may also be compensating from a potential muscle cramp.
So don't panic! Although lots of people do get met fractures, I don't think it's common for it to happen so soon after a scan. Chances are if your mets were bad enough to cause the possibility of a fracture, they would already be acting to prevent that. Like my doctors said, it's easier to recover from a stabilization and rads than a fracture.
Annieoakley - have you heard of DGL? It's a form of licorice (altered to avoid blood pressure issues) that is supposed to coat the stomach to avoid heartburn and ulcer issues. Some people also have good results from ACV, but that didn't work at all for my GERD. Have you been eating anything differently? Food allergies can spring up at any time, particularly when the immune system is kicked into overdrive.
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Wow
Milaandra Thank you so much for that very detailed account of your experience. I have had the 'wondering' that everything is also 'ratcheted up' because I am now cognizant of what's going on, and yes also 'hoping' that maybe this is a treatment response.
The SUV values of my right sacrum and L4 are pretty high ( though I still don't know what the values mean- like I have a few mets that range from 9 % and the biggest is 12.5%- can anyone speak to the SUV's?) I know I should be asking my MO about so many more things, everything just seems to go so fast in there. I guess I will become more skilled in organizing my thoughts and questions.
Once I have the MRI ( still waiting for the approval) I guess we will have more determination of whether or not any further action should be taken... I am praying that won't be necessary and treatment will start to kick in to aid healing.
Thinking of everyone here today and hoping that pain and dark thoughts are at a minimum
hugs
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I had to look up SUVs. I didn't have a PET scan, and they didn't give me SUVs, so I can't help with that.
Did they tell you if your lesions are lytic or blastic?
I had a bone scan, CT scan and before my surgery, an MRI to confirm. I had great, whopping holes LOL! that's an exaggeration. I had one great whopping hole in the L4...I saw the films back in October, but if I recall correctly, to me it looked like at least 1/3 or more of the bone was missing, including a large part of the interior wall. (I had been asking for the bone cement, and they showed me the films to explain why that wasn't an option)
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Good morning all,
Annie - I know you don't feel like going through that test again, but it would be a good idea. Hope you feel a bit better today.
Mommall - I'm just so sorry. Congrats on changing Onc and best wishes with new tx. You and Dani will be in my thoughts next week.
Dune - what's up?
Milaandra - you said it so well
My nurse called this morning. No lung infection and scan shows no significant changes from May. Blood work is good except for high calcium level - so obviously the messed up infusion did not do the job. They are questioning the possible link of the cough and out of breath (with effort) with the Aredia infusion and says that we may need to review/switch to another pamidronate tx. Xgeva was already on my list of questions/issues to discuss on 5 Oct. Onc is on vacation this week (although still checks up on patients). Onc will further review my case next week and nurse said she will call me back next week. This new nurse is awesome. What a difference with the last one who never followed up on anything.
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Milaandra - Oops, forgot to congratulate you on your good news!
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Good morning ladies,
Linda I have to agree the right oncologist is so important.
I have only been at this for a short time but I've changed my oncologist after a month of him tapping my knee saying he was sorry. He lost interest after I told him my husband and I couldn't afford his recommended after chemo therapy (Neuolastin ) at $8000 a shot. Was really sad such a nob .
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Linda--glad things are moving along and you will hopefully get the answers you need!
Any new news from patty? Lots of people asking about her on insomniacs thread. Hoping she's feeling a little better every day.
Prayers for all
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Thanks for comments. I'm so deaf at the moment, I think the whole row of rooms here had to sing along to Grease last night.
A second treatment this morning and platelets have zinged up to 89 which is great but they are keeping me overnight for one more boost. Saw rad Onc today who told me I could have radio to blast the hip lesion again and should get 6 months painfree (so it was active not regrowth - boo). Also told me he saw something on MRI which he thought was another tiny lesion on sacrum. Nothing to do about it at present. Oh joy, something to look forward to...
Going shopping tomorrow with BF. I've organised a "personal shopper" as a) I'll make better choices and b) will curtail conversation about health. I love my friend but she does want to wring her hands about how awful it is when she sees me - not often as she lives hundreds of miles away. Ungrateful of me but I like to do pity alone.
On the bucket list debate, I don't have one either just a reminder as others have said, how much I want to continue the life I have with husband, son and dog, friends, extended family etc - you all get it I know. Still, if someone wants to take me to Bora Bora...
Wishing all a good and pain diminished weekend. Want to hear about silver linings on Monday
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Linda, glad your scan news and blood work were all good! And glad the new nurse is so helpful! How're you feeling? It's scary to think that this could all be due to that too fast infusion!
Momallthetime, I'm glad Dani is finally changing oncs. Fingers crossed and heartfelt prayers that this new one will have the right approach for her needs! I was reading an article this a.m. about how ineffective testing for chemo sensitivity can be, but the integrative oncologist who shared it did mention a test he thinks is worthwhile. I'll find that and share it here later.
Wendy, I'm not understanding your comment about changing oncs due to a recommendation for Neulasta with chemo. Do you not have insurance? Neulasta (or Neupogren shots, as a lesser priced alternative) are standard practice and necessary with many chemos, to prevent a serious infection due to low WBCs. I totally get that you didn't like him, but just concerned that an otherwise beneficial recommendation may have been influenced by that. Did a new onc say you were okay w/o Neulasta?
3-16-2011, if I was in your situation, I think I would ask for a repeat MRI of your painful hip. If you had one this spring, it's probably been about 6 mos., and they would have a good comparison, to see if anything has changed. How about your TMs? Are they stable?
I may try to call Patty today. She has not responded to two recent texts, which I'm hoping only means her phone's not working. But it does worry me. Has anyone else heard from her this week? I'm sure you would have told us if you have.
Hello to our two girls from the UK! And yes, Milaandra, I will add you to our contact list (per your PM). If anyone else would like to be added, please let me know. This list only goes to those who are on it, and is a way for us to make a call or send a card or other encouragement when the situation arises.
Hugs & Happy Friday to all! Deanna
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Here's that article I mentioned above, which I ust posted in the research forum, as well: http://www.nature.com/news/use-of-personalized-can...
And for what it's worth, here's what a top integrative oncologist, Harvard educated Brian Lewanda, MD, had to say about it:
"Using molecular and genetic assays to pick cancer drugs 'personalized' to each patient is not proving to be a home run. I wish we could compare this flawed, yet widely adopted approach, against my favorite chemosensitivity functional assay (EVA-PCD.) The vast majority of cancers are too heterogeneous and complex to be outsmarted by an assay-directed approach that isn't focusing on the most important question: "which drug(s) kill this cancer the most?" The EVA-PCD assay answers that question."
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Dlb823 Hallo no to clarify that doctor had organized nothing no tests no scans nothing. I live in Canada where we have free health care but only if you can pay for it. So no it was not covered which was a shock to us . Turned out I won't be getting any chemo at all for awhile to come because I'm estrogen receptive 100% and it wouldn't give the right results. So hormone therapy for me for now along with my alternative stuff....
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Bosco, I'll bet you're anxious to get home. Just one more day with hospital food....That tiny lesion could be anything.
Deanna - I'm feeling much better thank you. And what about you? I was thinking of you this morning as I was very lazy and did not feel like walking. And then I said to myself, if Deanna does it, so will I. But it is so hot and humid that it was a very short walk, but still better than nothing. I really have my doubts that the tx could have caused all this. Anyway, they want to explore it and I'm all for it.
I sent Patty a text message a few minutes ago. Deanna, I can't thank you enough for that list of contacts - what a great idea. But I'm also worried that she has not answered your texts. I will let you all know whether I hear from Patty or not. I hope she's not in the hospital again.
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http://www.kaaltv.com/article/stories/s3908607.shtml
A new trial for triple negative. Yay!
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Hi ladies,
Just want to say hello and have a good weekend! I did read up. I'm having increased pain lately. I know, I need to discuss w onc but just not ready to see progression on the scan, so I'm delaying. Plus I haven't really given the Ibrance a chance to do anything.
But I feel burning pain, bones grinding sound, and tingling in my scalp, like a nerve tickle. Can't be good.
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http://cureconnect.info/new-breast-cancer-drug-to-get-first-clinical-trial-in-ireland/
And for those who are HER2 positive like myself...Yay! A winning day! Super busy this weekend, homecoming and my daughter is getting inducted into the National Honors Society. Hope everyone has a super great weekend. Hugs all around. See you Monday. XO
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Hello everyone,
Milaandra great news on the stable scan, I'm so happy for you and thanks for the tip on the DGL, I will definitely look into it.
Momallthetime, I'm always thinking of you and Dani and praying for her to find a treatment that is successful in keeping the cancer at bay.
Bosco, hope you get out of the hospital real soon but glad your counts are recovering.
Deanna, thank you for the link to the article.
Cjanet, I am still hoping that your increased pain is regression and not progression. My onc once told me healing bones hurt too.
I'm feeling much better today and thank you to all of you for your concern. Seeing my GP on the 30th and will see what she recommmends. I really don't want a scope but if I have to have one I will. I'm just glad things seem to be settling down. I got a 4km walk in at the island today before the rain starts, we had a gorgeous sunny and warm week.
Hugs to all, Annie
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Guys how can I easily access this page on the iPhone? There is no app 😩
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lindalou and Deanna Thanks for responding to my question. I see my MO oct. first and I will ask about repeat MRI. My tumor markers have been meaningless so they dont draw them. I have thought about switching from extemestane,but it is working so well its difficult to change.
Gaia I dont undetstand exactly SUV numbers but I have been lucky enough to see the numbers go down on every sight with each PET scan and wish you the same.
I wish everyone a good weekend. So nice to see others with the same thoughts on bucket lists. This weekend I plan to binge on time with my son ~ may mean a trip to our favorite comic book store and watching his favorite you tube channels.0 -
Hi all,
I did't get a reply to my text message I sent Patty yesterday afternoon. Unusual because she responded quickly the other times. Anybody hear anything?
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hello ladies, anybody ever had zometa infusion? I just got the go ahead from my dentist. Now I'm anxious about all of the details of this treatment. Se's and so on.
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Linda. I texted her again very briefly yesterday and have had no response.
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I've been on Zometa since January. No noticeable side effects that I would attribute to that drug. I only have one bone met. We did think it might be a possible cause of low platelets so onc was going to move me to Xgeva but now looks as if not related so I don't know whether that will happen.
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Bosco, thank you for your response! I really appreciate it
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