Bone Mets Thread
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Terre, what an adorable picture. Animals sure do make us happy and how sweet to have a kitten party to brighten her day. Thanks for sharing the pic. It's amazing how they bond with us and give us extra loving when we need it! Hugs, Annie
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I had a pretty good weekend. The pool opened here so I took my 2 kids both Saturday and Sunday. Saturday we were the first family to arrive of the season so the pool staff took our photo and said it will go in the local paper. Woohoo. Joking. It was fun to just do normal things like the pool. I did leave off my neck brace when I went though oncologist says I need to leave it on at all times. Sometimes I need a break since it makes me sweat. I do feel exhausted now and the pain is there as always. But I was happy to do things that all the other moms do, so I felt a little more normal this weekend.
I need to get an xray this week so they can see if there have been any improvements from radiation.
Hope everyone had a nice weekend, back to the grind tomorrow.
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GG27- Oh did you eat at that amazing hotel in Tofino with the view of the Candian Rockies that was to die for? It's been so many years ago, I have forgotten the name. We stayed in B&Bs mostly in our trip through Vancouver Island, but there was this incredible hotel and we booked a room. It was so expensive we couldn't afford to eat out. We peeked at the menu and decided.. well we can eat or sleep - not both. We got snacks and juice and ate by the fireplace admiring the incredible view. I remember being down by some docks and seeing a wild river otter playing in the water, skidding up on the docks, jumping into the water. Amazing. Love the photos.
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Rosevalley, We didn't stay the the Wickanninish, still too expenseve at $499 per night, The place we ate at was called Norwoods. The owner is European trained & it show, The restuarant was completely full on a Tuesday nights, we had to wait 40 minutes to get a spot at the bar for dessert. Sounds like you had fun even tho it wasn't the most conventional stay even.
I have to go to bed, I have a lot of travel to do. See you tomorrow. G'night Dee
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Hydranne - hooray for (mostly) good news!
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Dixiebell, I didn't see a doctor about my hand because of the weekend. I was going to call today, but it is much better now. The swelling is down and most of the pain is gone. It started in one finger, then settled down, but went on to the next finger, which was much worse than the first one. I'm guessing it was trigger finger from taking Aromasin, but I don't know. It seemed to subside pretty quickly, but it was brutal before it did. I was especially concerned because I have lymphedema in that arm. I'm just glad it's better because I couldn't function very well with my right hand messed up and being in so much pain. I took ibuprofen and tried to ice it, but that seemed to make it worse. I hope your friend gets better. Having a doctor look at it might help. Had I gone to one, I would have asked for a cortisone shot to ease the inflammation. I don't know what else would help. Others here have said you kind ofhave to wait it out.
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HI all! This is my first post, have been lurking here since April when I learned that my stage 2 ILC has become widespread bone mets. I am still trying to deal with the shock and the uncertainty that this diagnosis brings. I have learned so much from you ladies already. My current treatment is Ibrance with Femara and Xgeva. My onc is very optimistic that this treatment will be effective for me...I wish I had her confidence! I look forward to learning more about dealing with this uncertain time of my life
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Hi, Lynn, glad that you posted. I was diagnosed about 2 months earlier than you with bone mets to many places. I am treated with only Letrozole (the genetic form of Femara) and Zometa (similar drug with Xgeva, probably older and cheaper). I did ask my onc if I should also use Ibrance. I do not remember my onc told me the reason why not. He only answered my second question about Ibrance which is if I would miss my chance of benefitting from the new drug since it is claimed to be used for the first line treatment. He said Ibrance does not have to be the first line treatment. Later my onc indirectly tried to give me his answer to my first question when it appeared that my current treatment is working (three bloodworks showed steady lowering of TM numbers). He said he wanted to keep the treatment as simple as possible. He did not explain why simplicity matters. I have to assume that he tries to avoid using the word "fail", that is, when the first line treatment is no longer working, he has more to use. Anyway, I am now following my onc's "simple styled" treatment with no problem, but sometimes could not help feeling a little jealous about people treated with Ibrance. So, how do you feel your treatment?
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Xavo, I have been feeling well, fatigue is my only real side effect. When my onc started me on this treatment, she said that this is only one out of about 12 treatments that can be used for bone mets. I have been very lucky that my pain is minimal, I still can't understand how I can have mets in so many places and the only pain I have is in my left arm. Pet scan showed a broken rib and I had no idea. I did fall on the ice at work in February but fell on my left side, broken rib was on the right. Glad to hear your tumor markers are going down, mine went down 50 points after 1cycle, I don't know how good that is but the doctor was pleased.
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Welcome to the thread, Lynnwood. It does take a bit of time (or quite bit) to come to terms with the Stage IV dx. It's not uncommon to have mets with no pain. I have mets that don't hurt at all and others that ache, but part of that is from arthritis too.
I'm on Femara only; my MO wants to keep it simple too. Ibrance isn't funded in New Zealand; hence part of the decision to do Femara only. I am 2.5 years stable on it with no progression and no sign of active cancer.
And I live a relatively normal life. I think part of the reason to keep it simple is they want to start with the least "invasive" treatments first (i.e., those with least adverse impact on quality of life and least side effects) and save the big guns treatment for later if other treatments fail. If you TMs are coming down and you're not progressing, then there's no reason to have treatments that are harder on your body. That said, others will weigh in, I'm sure. We're each unique and our cancers are as well. So you'll see very different start-out treatments for different people here.
Sending hugs
Terre
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Thank you for your welcome. I hope Femara gives me similar results! I have much to learn going forward and appreciate all information.
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Welcome Lynnwood. You've come to the right place for help and support. I just got my diagnosis in January of bone mets after nine years cancer-free since my initial Stage IIb diagnosis. It was a shock, to say the least, and the women here have been so supportive and helpful. I'm sure I'm coping better because if them! I have learned that every woman's situation is a little different, so the treatments also differ. I started and continue to take Aromasin every day and receive an Xgeva injection every month. My tumor markers went from 99 to 44 to 34 to 22, 21 and this month 19. The docs like to start simple to leave more options open if the particular treatment stops working. Also, some of these drugs have some pretty difficult side effects that can be worse than the disease itself. As long as what you're on is working, stick with it. The next one might be harder to take.
Sorry you had to join us, but these women are fantastic and will always be here for you. I'm still trying to wrap my head around it, but I get encouragement and empathy here, and it has made a big difference. Life may never be the same, but it can still be very good.
Hugs, Sharon
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Lynwood - Sorry you had to join us but a warm welcome to you. I'm also on Femara and have monthly Aredia (pamidronate infusions). I'm very happy with Femara as it kept me stable so far (almost 1 1/2 year) with tolerable SEs.I had another mild malaise this week-end (mouth, jaw and chest pain). I don't think it's the Aredia. I'm thinking it could be gastric reflux? I stopped taking anti-inflammatories today (even though I take daily stomach coating meds) and see if that could be the culprit. Any ideas, opinions? And, Annie, no I don't hydrate enough. Gotta work on that.
Linda
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I had this "lump" extracted today by a dermatologist and will send sample to pathology same thing for another "lump" on the right temple results in two we
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Not fun @ lump, auroaya. Hope it comes back as nothing to worry about.
Linda - I get horrible reflux from Femara and doubled my intake of tummy meds (Prilosec in the US, prescription here) on advice from the doctor. Some days I can eat hot spicy stuff and be fine, and the next day I have a piece of garlic bread and acid reflux from it. Just not predictable. And the anti-inflammatories don't help. if it does turn out to be reflux, I'd check with the MO and GP and see if you can either try a different tummy med or up the dose. Good luck!
Terre
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Auroaya, that was a lump? Or a hive? Some kind of SE? Hope it's just SE.
Lynn, is a cycle 4 weeks? If your TM number dropped 50 points in the first 4 weeks, it looked like faster than mine. Mine took the first 5 weeks to drop 60. I asked my onc if my TM number dropping is slow, my onc said it's because the way the drug works is slow. As for symptom, right now I also do not have very much bone pain. I had severe rib cage pain in January and February, it subsided after the treatment started. My lower ribcage continued to feel funny but no longer painful. What is odd is when I complained about my ribcage, my onc told me that my ribcage only showed a little haze, actually does not have spots as other places (my spine, pelvis, and both femurs). I do not feel any pain in the places where the mets are. But how could you not feel pain with your broken rib? And in my case, how is that the place I felt so painful actually only has a little very mild mets?
Terre, are you still on your first line treatment? That is great it's been 2.5 years. Someone said here on the board that her onc said if your progression-free-survival passes the first 12-24 months after the treatments began, you are "over the hump". My understanding of it is the chance to be a very long term survivor is increased greatly. I wish I could follow your footprints to achieve that.
Sharon my first TM number (the baseline) was 269. Yours was 90. Does the difference suggest your tumor burden be a lot lighter?
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Xavo, Ibrance is 21 days on then 7 off. The Femara is every day.Xgeva monthly. I forgot to ask my onc if she thought the drop in tumor markers was fast or slow. I am still learning about all of this. My CA 27/29 is still high at 156. So much information to grasp about many different things, boggles my mind! A lot of what I have learned has come from these boards, so thank you all
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Thanks Terre - I'll look into it. I didn't know Femara can cause reflux. Boy I learn something new every time I come on this site.Aurora - 2 weeks is long. Hope everything comes back benign.
Xavo - I have one little met on a rib and when it decides to get vicious, the pain is real bad. I too don't understand how a small little thing like that can hurt so much.
Linda
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Thanks for the info Xavo. I hope so! My first MO said I would live to see 60. I turned 60 today. In New Zealand, my birthday was yesterday (15 June), but since I was born in the US and it's the 15th there today, I guess I really didn't hit the big 60 til today.
I think there are a few here who are stable on Femara for more than 3 years and there are some still stable after 5. Fingers crossed for all of us!Linda - my MO said the combo of anti-inflammatory meds and Femara is known to cause massive nasty acid reflux. Since I've doubled my dose of tummy meds, it's better. I have friends bring/ship me pepto bismol caplets from the US, so when I get really bad, I pop a couple of those. Definitely will cure what ails you tummy-wise. They're legal to have here, but not available to buy. I got two bottles for my birthday in a care package from the US. Along with a lovely bottle of wine I can't get here and a bottle of chili powder (for making chili con carne). The "chili powder" you buy here is ground chilis and hot as blazes -nothing like the chili powder you get in the US! For the most part, we can get whatever we want/need here, but there's always a few things we can't get. However, my Kiwi husband says that the payback is that you can't get a good meat pie in the US.
Lynnwood - Romansma is also on Ibrance; maybe look her up by doing a member search. She's been on it for a while now.
Hugs to all,
Terre
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Xavo -- good question. That would be my guess. I was seeing my MO every 4 months, and in November (2014), my TM was 50, 18 above the top of the normal range. He repeated the blood test in December, and then it was 70. So then I had all the scans etc., and by January 2 I had my diagnosis and a TM of 99. I think it was a matter of catching it early , before I had any pain. When I saw him in November, I complained a bit about some aching in my sternum and thoracic spine, but I already have a lot of arthritis in my spine, and I had just gotten over a cold during which I had a cough, so he said the sternum ache could be from that. I'm sure that he put that together with my TM's and suspected what was really going on, but didn't say so until he had more evidence. At the rate the TM's were climbing, I think I would have had a higher baseline if I hadn't had bloodwork for a routine visit that showed something was going on. If he had waited until I had pain, the TM's could well have been much higher. It seems to me that it was just a matter of timing, and that was lucky for me. At least as lucky as you can get with a diagnosis like this! As soon as I started Xgeva, my aches went away and now I just have my regular old arthritis pain, but some of that seems to have been lessened by the Xgeva, too -- a good side effect for a change.
Sharon
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Happy Birthday, Terre! I hope you celebrate many more. That is my hope for us all.
Sending a big hug to you.
Sharon
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Happy Birthday Terre!
I had a PET/CT yesterday, results the end of this week/beginning of next. So you all know how I'm feeling right now!
I'm hopeful about the results. My TMs have dropped a lot (766 when I started Navelbine in March, 344 in mid-May). The pain in my hips is gone. I didn't need anything stronger than ibuprofen for it but I haven't taken any in months.
Sharon, I was completely without symptoms when my mets were found. TMs were normal, no pain. It was found on a PET scan that I had as lead-in to prophy mx on remaining side and DIEP (which didn't happen). Low level of bone mets, stable on Femara and Aredia for almost 3 years. So I hope whoever said stable for 12-24 months is a good chance for long-term survival is right.
Leah
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Hey Terre, Happy Birthday to you 🎵🎂 and wishing you many many more!!! And as Sharon said I wish this and pray for this for all of us. I will turn 50 in August and as young as I feel, I know there are many suffering this that are younger than me. I'm hopeful the future will bring us more treatments that will keep us here for a very long time. Hugs to all, Annie
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Lynwood , so glad you posted and let us know how you're doing. I don't post often, but since my dx in 2012 I have learned so much from all these terrific women whom I consider my friends. I asked lots of questions in the beginning and it helped me so much.
Terre, Happy Birthday, I hope you enjoyed your special day!!
Leah, Sending good thoughts while you wait.
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Terre, now and here in the States where you were borne it is 6/16, Happy Birthday and many many to come!
Lynn, my TM is CA 15-3 which tests the same stuff as CA 27/29, so they are similar. My impression is CA 15-3 is somehow cheaper, I might be wrong, though. My last TM number (the third) was 150 4 weeks ago.
Sharon, you are indeed lucky to have your onc monitoring you so closely. I did not have TM tests ever since my initial treatments ended 13 years ago. I tend to believe the cancer problem is by nature a matter of mathematics. When the quantity of cancer in one's body is overwhelming, one is killed. So tumor burden matters. I tried to offer my opinion to my onc, he did not comment, probably thinking it's not very meaningful.
Leah, it's great that you have been stable for 3 years! I think that onc who said stable for 12-24 months is "over the hump" refers to the graphic image of the lines. Most research papers and trial reports have the medium PFS (progression free survival) number of 12-24 months. Many or most patients, despite of the initial response to treatments, tend to have progressions within 12-24 months (that is why stage iv is a very bad thing) after treatments begin, according to a paper I read. However, this includes all types of MBC. If bone only and keep being bone only, the chance of long-term survival is good, according to what I have read.
Dune, did you say you will have your lymph node evaluated this Monday? Have you? Thinking of you.
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Kiwi - That is a sure way to make me smile. Love kids and omg I am a cat lover, dogs too. I have a black Lab and 2 cats. One is a purebred ragdoll. They are my babies. Also that is what my daughter does for a living.. works with children with autism. She is an IT (Instructor Therapist) . I am also so grateful for my son and daughter who do their best to look after me ( lost my hubby in 2008). My son weights on me hand and foot and my daughter stayed with me during first chemo and overnight. Noon on the 2nd day is when it hits you. Down and out for another day and half but I'm on my way back to norm now. Weekly treatments my seem like going in circles!Best to you all,
Cathy
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Happy (slightly belated) birthday, Terre! Hope you were able to celebrate big time! And who knew a little can of chili powder was such a rarity in NZ? Don't hesitate to ever let me know if there's anything else you have a craving for and can't get. Happy to send you whatever it might be! Oh, and I loved the precious photo with the kitten and autistic child!
Welcome, Lynwood! So sorry about your Stage IV dx, but it's good you stopped lurking and joined the conversation.
Auroaya, keep us posted on your biopsy results! Fingers crossed it's nothing serious. I also have a couple of weird skin things I keep doctoring with various natural creams, but will have decided to show my onc if they don't go away by my next app't.
Dune, glad your onc thinks that node lesion is looking good! Keep us posted.
Leah, so glad to hear your TMs have taken a nosedive, and you're off pain meds! Prayers for continued great response to Navelbine!
Xavo, thanks for the "over the hump" fact! I don't like reading stats, but that's one I was happy to learn!
Dee, absolutely beautiful beach pix!
Hello & hugs to everyone else, and apologies if I've missed acknowledging specifics due to how fast this thead is moving. Deanna
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Terre - The BIG 60! Happy birthday! and thanks for the additional info.Leah - Scanxiety time UGH. Very good news on TMs!
Yep, I like those stats.
Patty - where are you. Hope you're having too much fun with hubby and not enough time to for the site.
I slept in until 11:00! I never, ever do that. But I felt like a little princess....
Nice day to all - Linda
Edited to add: Dee - wishing you the best this week. Thinking of you and great pic.
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Xavo, yes I guess I am lucky my MO has monitored me so closely over the years. For the first five years after my initial diagnosis, I saw him every three months. A couple of years later he stretched it to every four months. He did this because I had declined chemo. My surgeon was sure he got everything and my tests were all clean so I made that choice. I don't regret it at all, but you can imagine how shocked I was that after all that close watching, I still ended up here. Doc says they now look at bc as a systemic disease, and once you have had it, you can never be sure it won't come back. He also says he believes more and more that it can be regarded as a chronic condition that can be managed for a long time with the tools they have now, and more are coming. He's very conservative, so hearing that from him was comforting. That doesn't always help those nights I can't sleep because this hangs over my head, but I guess that's what we deal with in Stage IV.
Best wishes to everyone today!
Sharon
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