Bone Mets Thread
Comments
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Terre - I'm curious, which brand of Femara are you switching to? It was changed to TEVA in August here and I notice I have less stiffness.
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Dee and Annie,
Hope the scans go well for you both today!
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Dee, I hope your appointment with your PCP goes well today.
Annie, goo luck on your scan.
I am thinking of both of you today.
Lynne
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Going back a few pages and trying to catch up...
Terre, loved the kitten pictures! They are all so adorable, especially that little blue-eyed one (#1)!
hawksfan ~ I'm so sorry you're dealing with neuropathy, but I would personally never simply accept a permanent or irreversible prognosis without trying some complementary things. It's easy for a doc to tell you that, but they are speaking in generalities, and the people they've seen may not have done anything to help themselves. Have you tried any supplements? B1 (thiamine) and ALA (alpha liponic acid) can both be helpful. I would also ask about PT and definitely try that if you can get a doc to order it for you.
Cristina, glad to see you're going for a second opinion. Is that today? I'll be very interested to hear what you find out!
And, Dee, I can't believe you travel that far and only get 5 mins with your onc! How frustrating! I hope your PCP appt. today is more satisfying. Sounds like you're having a scan today, too, although I can't find your post that mentions that. But good luck if you are! My thoughts are with you!
If I didn't say it earlier, welcome sqrlady! Hope you're already feeling a bit better by today, and I'm hoping for only good news on your scans!
(((Annie))). Hope your scan goes smoothly today! And what's up with your adventurous daughter doing that trip alone? I'm sure she'll be fine, but is she meeting up with friends there?
Patty, love the illustration! So true! And Linda, I've never seen an albino squirrel. How interesting!
Good luck with the biopsies, Stillivin'! I didn't quite understand about a biopsy on your femur replacement. Do you have a titanium rod?
Suems, I'm wondering if you would do better with Xgeva? Have they mentioned maybe trying that one as an alternative? I know it works by a different mechanism, and although I've only had one shot so far, my SEs were minimal.
Patty, have fun tonight! Take some pix for us! Have you painted before? Maybe you'll find a whole new interest to pursue!
Hugs to all, especially those not specifically mentioned! Deanna
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Hi Ladies,
I started Ibrance last Tuesday and so far so good...no noted SE's however, in all the paperwork I've received from the MO's offices as well as various other resources, they pair it with Femara. Femara failed me after 2 1/2 years so now I get monthly Faslodex shots. Who knows why some oncs recommend Femara over Faslodex? Would I ever go back to Femara while on Ibrance? I know I should ask these questions of my onc but so many on these boards have great knowledge and experiences and quite frankly, speak my language.
Thank you.
Amy
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Hello to All, and happy Monday. We are wishing everyone a good, and positive week
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Amy, they did the trials with Letrozole (Femara), so that's why it's considered the first choice as a first line treatment. Since it's failed you, Faslodex (which is what I'm also on) is the appropriate choice to pair with Ibrance now.
I had asked my UCLA onc about the other two A/I's when Anastrazole (the first tx I was on) failed me, and she said I possibly could try them in the future. But since Anastrazole had just failed me (so my bc had figured out how to get around that mechanism), going to something that works via a totally different mechanism was preferred at the time, rather than another A/I (Femara).
Hope this helps some, but it sounds like your onc is totally on top of things!
Editing to add... Happy Monday, Mods!
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Deanna, that makes sense. Thanks for the information.
Who's in the line of fire for Kayla, the next big blizzard? We're on the northern edge but we've had so little snow this winter, I wouldn't mind if we receive a substantial amount. When I don't have anywhere to go, it's nice to "hunker" down, read by fireside and listen to music. I hope you all stay safe and cozy, where ever you are these next few days.
Good luck -
Amy
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So on the talk about thyroids....I have a thyroid nodule that is most likely the result of scatter radiation for me. All my blood tests come back normal, even though I have so many symptoms. Saw an endocrinologist and he wants to do a biopsy. Thinks it's cancer. He did say that if I had to get my thyroid removed it would be very difficult to get it regulated because of the cancer hormone therapy I've had etc. Not the same as keeping a thyroid and adding synthroid. I need to pursue this further. MO is not convinced I need a biopsy.
Amy, good to see you and glad Ibrance is so far ok for you. We are predicted to have 8-14 inches here.
Deanna, it is a small world isn't it?
Patty, Have fun tonight and I really liked your illustration. I was nodding my head in agreement!
Christina, How are you doing today?
Lynne, Holding up ok being a caretaker? Isn't it weird when the roles are reversed?
Dee and Annie, keep us posted.
Good day to all.....
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Thank you all for your comments on my Zometa experience.
Terre, that's interesting about Richard Isaacs not believing in Zometa. I had a long phone chat with Kay, the local Oncology boss, and we have agreed that i will see Malcolm Anderson as planned on the 17th, and then get a referral put in for a second opinion with Richard. He's fully booked until next month anyway. She is going to book my bone scan so I hopefully know what's happening, and will have something to talk about with Malcolm.
Xavo, yes, I had figured that there was a good reason I was getting Zometa, and I think it should be replaced with something with less drastic side effects. Apparently 24 hours with a fever of 102 and the shakes is a severe reaction, especially if Zometa isn't doing anything useful anyway.
I'm intrigued to see what happens on teh 17th!
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Dee and Annie - rooting for good scans! Lindalou - I had a thyroid scare prior to BC and have been on Synthroid for several years without SE. Amy Q re: Ibrance, the hair thinning and bloody nose is rough for me - I'm on 125 mg. After round 2 will inquire about going to 100 mg to reduce SE. I'm on a trifecta of Arimidex, Ibrance and Faslodex. My onc said Femara and Arimidex are similar so he is not changing. Dee is spot on (as usual) that the the original tests were Ibrance + Femara - hence the pairing. I was initially turned down for Ibrance due to not using Femara! My onc told a 'white lie' to get approval. I start round 2 on Thursday plus Fas, not looking forward to butt shots and driving home alone, but getting used to this. That albino squirrel is so cute! The wind here toppled a tree last night.
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Hi everyone, It was wonderful having my son and his family here on Saturday. They brought a delicious dinner, a birthday cake, and my granddaughter's homemade ice cream. We ate on my Christmas china, a bargain I bought many years ago. It was fun watching the kids open their gifts. My grandchildren were happy to see Grampy at home instead of the hospital. We still have gifts for three more grandchildren. Christmas goes on and on. My DH had a great day but was exhausted by the time evening came.
Patty, I think you asked the ages of my grandchildren. The two who were here on Saturday are 12 and 10, but here are the ages of the entire gang. There are five Boys - ages 14, 12, 11, almost 11, and 7. There are four girls -ages 10, 9, 16 months, and 1 month. It sounds like a lot, but I have six sons, so they are spread around. Enjoy your painting tonight. It sounds like fun. Tell us all about it.
Linda, I feel lucky to be healthy enough to be the caretaker, but I find it to be extremely stressful and exhausting. I want to be able to wave my magic wand and make my husband better NOW. I am confident that my DH will recover, and that keeps me going. I try to imagine what it must be like when my dh is my caregiver, and it saddens me to think of how it impacts him. I'm sorry you have a storm coming. Stay safe, warm, and dry. It is difficult to know what to do about your thyroid. It seems that there is no clear cut right step to take until you have more info.
Amy, I hope you continue to do well with no SEs from Ibrance. I hope this tx with Faslodex and Ibrance gets you to NED and keeps you there for a long time.
Hello to everyone else. Wishing everyone a good evening/day.
Lynne
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Hi everyone!
As usual my PCP is wonderful. We had a good long chat about many things, headaches, thyroid, MO & MRI's. He doesn't believe that my headaches/smoke smell is anything other than migraines & while very annoying, not brain mets. He says brain mets does not come & go, it just gets worse. He also doesn't think I should have an MRI, that I'm having too many scans and he agrees that a "watch & wait" attitude is the way to go. I will discuss again with my RO when I walk to her in 2 weeks.
As for my MO, I am going to see my PCP about a month prior to my next MO appt & he will write her a letter outlining any questions that I had for the PCP. It's kind of like, my patient has these questions that I don't have the answers for, would you mind answering them. It lets her save face (for now) but lets her know that we have issues. Then he says if that doesn't work, we'll look for another.
Thank you all for your support & suggestions, I appreciate it. Take care, cheers, Dee
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Hello to all,
Thank you so much for all the well wishes on my scan today. It was a very long day, they kept having emergencies who were taken in before anyone with appts. A little frustrating but I totally understand. Feeling tired now so probably going to make it an early night.
Lynne, your get together sounded like a lot of fun. I'm glad dh had a great day and I'm sure it was tiring for both of you. Rest up now.
Deanna, my dd went to meet a friend who has taken a position there at The Ritz Carlton, he'll be there til August. She's having an amazing time and I'm proud of her having the courage to go alone. Although I'm back here always thinking of her and missing her terribly.
Amy, may Ibrance be good to you and get you to NED.
Patty, my sister did a class like that, she is not artistic but really enjoyed it.
Dee, sounds like a good talk with your PCP and no MRI for now sounds good.
Hugs to everyone, Annie
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Annie and Dee I am in the scan club today. I had a cat scan of hips and ribs, which have lately been causing too much pain. I hope we all get good news. I am bingeing on news from Iowa caucasus to distract.
Thinking of you lindalou and hope your MO is correct.
Terre I loved the kitten pictures.
Good wishes for a painfree week to all.
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Mary, I hope the results of your scan are good and that they figure out what is causing your pain. I hope it's healing and not progression.
I am also tuning into the news from Iowa tonight. It should be interesting. Next week I will vote in the NH primary. The politicians have been appearing all over the state for months. Campaign supporters go door to door every weekend. It is exciting to be invited to meet and hear the candidates. We are lucky to have the right to vote, but it is easy to take that right for granted. I have to admit, however, that it gets pretty crazy during the primaries.
Have a good night.
Lynne
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Busy day for a lot of us today! Wishing excellent results to all who had tests.
Dee - good plan with PCP and good news on brain!
LindaL - wishing you the best if you decide to have a thyroid biopsy. Can't remember if I said this before but I have a nodule on thyroid that was picked up on a PET scan. Biopsy showed Hurtle's cells which can or cannot be malignant. The only we would know is to remove the thyroid. We decided against it and continue monitoring and nodule is stable.
Went for routine MO appt today and she wants to run allergy tests re contrast dye for scans as a result of my anaphylactic choc in Dec. We can do without contrast for now but she would much prefer to find another substance for future use. The anti-depressant I take (Zoloft) cancels the sensitivity of the testing so will have to change meds for at least 3 weeks before testing begins. And the fun begins...
Nice to see you popping in Mods. Good week to you too!
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I can't access this file it says, forbidden, on my computer - maybe a virus?
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Mary, sending positive thoughts for good scan results. I'm sorry you've been in pain but as Lynne said hoping it's healing and not progression. The waiting is the hardest part, we need to keep ourselves distracted.
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Dee it's so nice that you feel so comfortable with your doc. I do have to mention that MRIs are not consider high in radiation. You could read about it and you could see for yourself. My daughter always has MRI of the brain after PET/CT, it's just different, and neurosurgeon wants to see it along the PET/CT for her lesions in her skull and the ones really "by" the brain. Just saying. Of course one could just watch it also. I am sorry if I make make you have doubts, but its a good modality to be more precise of what is really going on with your headaches. And as I mentioned they do have open MRI. Alternatively, have you tried migraine specific meds? like triptans etc.. I have migraine, and I could tell you there is no way for me to function if I don't take this meds. Some ppl are even worse off in that they see aura, faint, vomit or have nausea. I just have this horrendous "headache"on top of my eyes, head, sometimes I can barely speak and it won't go away or get any better if I don't take these meds. It's not something that you could just go on and on every day if it's not treated. It's too disrupting. Dee I know you might think I am cuckoo, I meant Mary's son.I hope you feel better soon.
Lynne you NEED a break. Such good remedy to see the children. Best,
Hoping to hear good news on all other scans.
BT results tom for Dani. Let's see how this mixture is working out!
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Momallthetime, I most certainly do not think you are cuckoo!! I knew you had just mixed up two of us, there are so many here that I need to scroll back & forth between pages & then I always miss someone who is dear to me. Thank you for the info on MRI's, I had read that they aren't high in radiation & my PCP confirmed that today. But he asked me many questions about the headaches that the MO didn't. She just sent me for tests. He says that sometimes headaches are just that, headaches. I will talk a bit more about it with my RO who was going to order it. They already did a bone scan & a CT scan. I believe that they do have a newer more open MRI in Nanaimo. And thank you so much for thinking of me. Fingers crossed for the results tomorrow for Dani. cheers, Dee
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Hi all...reading but so far behind on the thread (again).
I am now on Letrole by Mylan. Can't remember the previous (generic) brand.
Thank you for all the kind comments and wishes and glad the kittens gave a bit of a smile.
So great to see Myra done with radiation. Annie - glad your scans are done with! Dee - glad you had a good talk with your PCP. Momall- fingers crossed for Dani.
Lindalou - good luck with the thryoid. Have similar issues: all the symptoms, but bloods come back normal. I do have a nodule; was biopsied several years ago and wasn't cancer, but . . . tricky situation for you.
3-16 - good luck on your scan too!
Going to be lazy and just send hugs to everyone else.
I see my orthopedic surgeon on Thursday for my annual checkup. Three years since my rod implant in my femur. Guess we'll know if I have any screws loose.
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Kiwi glad to see someone had good results with the rod implant, three years! That's great! I only lasted one year because the hip bone where the rod was attached to dissolved by cancer, so last October I had new surgery which I had total hip and femur replacement and I'm hoping this time will be much better, in fact I know it will, I have no pain and can walk pretty well with the walker. I'm still taking PT and I'm hoping to get to the point to be able to walk with a cane or all by myself even.
I love your kitty pictures please share more if you can.
Aurora
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Dee - always on my mind. Sometimes I just don't have the energy to get to the site, but I always want to. You guys are like good neighbors. Sometimes closer in spirit than other relationships. We are helping an elderly couple 2 houses away with health issues, their own grown children find it too difficult to travel 15 mins away to check on them. And so it is.
So... no TM's as I thought that we would have for this week, but next week only. The Neutr% are 3.0 and Lymp% are 0.6 - and the others are not bad. Now we are waiting for Onco to call us if he's gonna tell D to get off the Ibr for a few days again. Some other #s are either high or low. Platelets are lowwww - tomorrow she has to have a procedure on her foot, I hope she won't have a problem due to low platelets. She wants to have it done, so I don't think she wants to tell them about the low plts and just bare it. Agh... She doesn't like to tell the whole world about it. Incl, docs...just the way it is. When he calls I will try to ask him about lowering the dosage of Ibr.
Awaiting everyone's scans results with much hope.
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MomATT, I'm not sure any procedure is a good idea for Dani right now. Low counts in general are nothing to fool with because they could result in infection or just a non-healing wound. Just my unsolicited two cents worth, but I would definitely run that by her docs before proceeding! Seriously!
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That's great Aurora! You didn't have that surgery that long as I recall, so that's super news about no pain and walking. PT does help. And it's a process. Took me a good 4 months to walk without a cane, and mine was less intensive than yours.
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Mommat
The Drs need to know the whole story before they do a surgery. It's in Danis best health interests. I would hate for her to have any unnecessary issues
Babs
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Hi Everyone, I've been really busy with normal life stuff which is really nice. I'm so far behind. Hoping all who have scans get good news. Just popping in to say hi and let you know that you are never far from my thoughts. XO
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Deanna - Babs thank you so much. Yep, just spoke to Onco, I pushed myself to ask him even thou she was not crazy abut me asking, and he does prefer she holds off on HER plans. She's not happy but will cave in. She's been planning this since May and there is always something else pushing it off. Also, he is lowering the dosage to 100 and meanwhile she should take the 125 every other day, until the new dosage comes in. No Neupogen this time. I guess the white count is not so low, the neut% are, so there is a balance I suppose. I will speak to PA tomorrow.
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Hi everyone
Thanks so much for all the good wishes. I got the report today and will meet with MO Thursday. Report says stable HOORAY. I am going to assume pain is healing until I hear otherwise. I hope everyone with scans had good news as well.
Momallthetime I assume you were asking about my son. He is working hard to get to the end of his first high school semester. He is kind and caring and I know that will get him far.
I enjoyed watching democracy happen in Iowa. How lucky we are to be able to vote. I do think it would be difficult to enjoy the spectacle if I lived in Iowa or New Hampshire.
Good Tuesday all
Mary
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