Bone Mets Thread
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BigPeaches, I'm sorry you were so sick! I hope that never ever happens again.
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Holy crapiola, BigPeaches! Glad you're home and back with us. Sending prayers for an easy treatment tomorrow.
Chris, you've got a good handle on your mom's circumstances and are thoughtfully working through your options. I wish your mom comfort as you decide what is next. Please keep us posted on your journey.
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Vevs....My compression fractures showed up on a bone scan. I don't think they'd show up on a CT.
Lita...you really are a champion the way you keep going despite the discomfort, pain and just sheer horriblness (my word) of it all. You're an inspiration when my spirits go down and I feel ashamed when I see what you have written.
Minnie, Lynne, Maire, Gracie (and anyone else if I've forgotten)....thanks for your thoughts. I saw my oncologist's senior trainee at my MO appointment last week and it was a worthwhile chat. He's upped the dose in my Fentanyl patch. I can't be sure that my pain is any less yet because a new area around the sacro iliac joint has started giving me pain now. I asked a few questions about the future for the first time. I haven't wanted to seem negative before this and, tbh, I didn't have any real questions but he told me that he wouldn't call what's happening as "progression as such", although they are keeping a watchful eye on the TM because of its upward trajectory. He doesn't think my skull lesions will have progressed into my brain and says I'll know it if it does. Very reassuring.
I can't remember who commented on my 2 rib fractures but it's nothing! I had 7 or 8 before I was diagnosed and started on treatment. That was in the spine alone. There were also two compression fractures in my spine, which have healed.
BigPeaches....wow, out of hospital for now. Praying that you don't have an experience like that one again
It must be so hard knowing you're still taking the chemo that sent you there in the first place.I can't believe it! I'm now eighteen months post dx and tx! Time goes so quickly.
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Treatment went well yesterday, they backed down the taxotere by 15% just to be safe. So far so good, waiting on my Nuelasta to go off this afternoon and we'll see how that goes. Side effects usually kick in on the weekend so we'll see.
Thank you for the thoughts and prayers! This place is a God send!
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Treatment went well yesterday, they backed down the taxotere by 15% just to be safe. So far so good, waiting on my Nuelasta to go off this afternoon and we'll see how that goes. Side effects usually kick in on the weekend so we'll see.
Thank you for the thoughts and prayers! This place is a God send!
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Treatment went well yesterday, they backed down the taxotere by 15% just to be safe. So far so good, waiting on my Nuelasta to go off this afternoon and we'll see how that goes. Side effects usually kick in on the weekend so we'll see.
Thank you for the thoughts and prayers! This place is a God send!
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Treatment went well yesterday, they backed down the taxotere by 15% just to be safe. So far so good, waiting on my Nuelasta to go off this afternoon and we'll see how that goes. Side effects usually kick in on the weekend so we'll see.
Thank you for the thoughts and prayers! This place is a God send!
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Big peaches, Yes, this place is godsend! I hope you are feeling much better!
To everyone who provided input on fractures, thank you! I had it done yesterday and dr told me that the bone was sclerotic so there wasn’t much he could do. He said he had only put very little cement/glue to the bone. I think by sclerotic he meant healing bone? I wish they had seen that first and maybe I didn’t need to get the Kyphoplasty? They said it will be immediate pain relief but I’m still in pain....I hope it’s just related to the procedure.
Now on to radiation...for T3-T7.
Thanks everyone!!! You are all amazing!0 -
Leapfrog, keeping you in my prayers as you navigate these choppy waters. Fingers crossed it's just a dip in the Ibrance tango and you'll regain your equilibrium directly.
BigPeaches, wishing you smooth sailing through the weekend and next week.
Minnie, same prayers for calm and pain relief after your procedure.
We're all in this lifeboat together and I'm really glad to be in such good company!
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Big Peaches and Minnie- Thinking of you and hoping you start feeling better very soon!!!
Leapfrog - Sending hugs and prayers for just the right treatment!
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Interesting occurance today...called my CO onc to see if she wanted me to get labs prior to upcoming appt. ...oh yeah...that would be a good idea. Do we get honorary MD degrees after managing our care?
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I know, Kathryn! The same hospital where I got my hysterectomy, I was asked for my pee prior to procedure in case I’m pregnant. I list my surgeries every procedure. Oncology Dr from the same hospital also told me I can take Lupron at one point after he had approved my total hysterectomy. I had to remind him I have no ovaries for Lupron to work with...0
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Thanks Jaylea and Iwrite xxx
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Hi fellow cancer ass kickers! Wanted to see if anyone has had recurrent C. Diff and if they just kept giving you antibiotics for it or if they did a Fecal Transplant? This is my 3rd time getting it in less than a year and I’ve been on Flagyl, Vancomycin, and Difficil. They each worked and I test negative after completing, but then it shows it’s ugly head again. MO referred me to an infectious disease dr that I’ll see on 7/10, she said they will probably want to do a Fecal Transplant. Sounds really gross, but from what I’ve read it has a 95% success rate and saves lives. Anyone have this procedure done?
Thx
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I haven’t had a fecal transplant done on myself, but I know people for whom it was a God send!
If done properly, it will resolve the cdiff. Good luck
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Hello, it's been awhile since I had any news or developments to share so I haven't posted here in a long time. But, I had a PET scan today and there is something puzzling in the report. I'm hoping someone might help me to understand it. My MO has said that there is essentially “no change" since last PET so “it's good". I have an appointment with her next week so I will have a chance to discuss but in the meantime, would appreciate the input of this incredible brain trust!
Among the other findings the PET report says this:
'Tiny focus of increased uptake within the right psoas muscle without anatomic correlate. Focality raises suspicion for metastatic disease. Further evaluation with MRI of this region may be of additional diagnostic value.'
I have liver and spinal mets. My liver has been stabl since my first cycle of THP upon diagnosis 3 years ago but one stubborn spinal met (L-2) flared up again in December with progression so in order to keep going on Kadcyla, which has otherwise been working well for me, I had SBRT to the L-2 in January. Both an April MRI and today's PET indicated sclerotic lesion at L-2 so while it is still mostly good news, I can’t help but worry.
Does anyone know anything about skeletal muscle metastasis? What I've gleaned from my own research so far is where the psoas muscle is - low back (I'd never even heard of psoas before) and that muscle metastasis (never heard of that before either!) is rare for breast cancer but that's little consolation if I have it. Could this be something else? I appreciate any thoughts or experience anyone can share - thank you!
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Margarita,
I have muscle mets in my lower back, too; one of the areas is the psoas muscle.
I use Volterin Gel and alternate with cbd balm for the pain.
L
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Lita, thanks so much for your response though very sorry to hear that you are dealing with this too! Does it generally change the treatment protocol when it spreads to muscle? I’m confused by my doc’s statement that basically nothing has changed even as we now see this muscle thing. It sounds like progression but she hasn’t yet suggested changing treatments. I don’t yet have significant pain from this - maybe just a dull ache when I stand or sit for too long in one position but will keep your pain relief suggestions on hand for if/when I need them.0
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I've had muscle mets since 2016, and it hasn't changed the Tx protocol. Still get the chemo, no matter if it's organ, bone, or muscle.
L
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has anyone ever just woken up with a stiff and painful achy jaw? I just had my 5th taxol treatment and about 2 weeks out from my first zometa? So now I guess it all boils down to three questions, which I will no doubt be asking a lot:/ is it the taxol? Is the zometa? Is the cancer? And just for fun I might add that my daughter is taking me to see Harry Styles this weekend:)
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Chef, I'm having trouble opening my jaw all the way, and I've noticed that it gets a little painful every now and then. Of course, I've been getting Zometa infusions every 3 mos since spring of 2016. Went to the dentist, and he said bones are still in tact, but the Zometa will eventually start doing some stuff if you take it long enough.
L
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Hello ladies - I have not posted in quite a while, but I read almost every day, and you are all in my thoughts. I wanted to post today with an update on me. I am coming up on the 2nd year anniversary of my Stage IV diagnosis (after a Stage IIIA diagnosis in 2011, BMX, chemo and radiation at that time). I am Estrogen positive and have extensive mets to bone, but no soft tissue involvement at this point. I have so far done a run with Ibrance/Faslodex, and, since December 2017, Xeloda. A scan last week showed notable progression, so I am done with Xeloda. My onc would like me to try a clinical trial starting at my hospital (Northwestern in Chicago) which combines Carboplatin with Pembrolizumab (immunotherapy drug). I meet the basic criteria, but need to do some bloodwork/screens to confirm, and can't do that until the Xeloda has been out of my system for 2 weeks. So, I stopped the Xeolda as of Thursday, and am in treatment limbo for a few weeks. On the bright side, I won't have any side effects while I'm in limbo! If I end up not qualifying for the study, onc wants to try Navelbine. I need to do some research on all of these drugs while I am on my treatment break, but thought I'd put it out here to see if anyone has any initial reactions to this potential plan.
On the personal side, I am still struggling through a very unfortunate divorce - many financial and other issues to work out and no understanding or caring from my "husband" regarding my cancer diagnosis - part of me thinks he hopes I will die soon so he can have control of all of our assets; I am not doing that. However, I did just return from a trip of a lifetime -- I took my three kids (15,12 and 10) to Tanzania. We has a 9 day safari and then 3 days on the beach at Zanzibar. It was incredible and wonderful, and I am so glad we went. This was my #1 item on my bucket list!
Love and hugs to all, Lisa
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Hi lemon drop:) unfortunately I don’t have any info on those threatments. I started my stage 4 bone mets journey with taxol and zometa. I just finished the 5th treatment. It has gone ok. I haven’t had scans yet to tell if it’s an acceptable treatment but I do feel better so I’m hopeful. Whatever works!! I wanted to start with hormone stuff but I progressed immediately with tamoxifen so that wasn’t an option. I am so sorry about the divorce. May you have strength beyond your imagination and support coming out of the woodworks! Wow what a trip!!!! That’s so exciting!!!! Awesome memories! My daughter is dragging my bald self too see Harry Styles tonight:)0
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Hey Lisa!
Good go on your trip. I made a vow to myself to devote a huge chunk of our family income to take my wife on as many trips as possible and there are a few ladies here who do the same.
Navelbine has been around for quite some time so it's a well established form of chemo in current therapies. Europe has an oral formulation but I am not sure it has been approved in the States yet. Could be worth mentioning.
Best of luck with everything!
Daniel
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Keep traveling while you can, ladies and your caring, loving caregivers!
i just got back from Yosemite last week, and we're planning on going to the Grand Canyon in a few months.
BTW, if you're on disability (from St IV cancer), you can get a PASS from the Nat'l Parks where you can get into ANY ONE OF THE NAT'L PARKS for FREE!
We just got ours the week we were out in Yosemite, and I didn't have to pay a dime. You just need to show them your proof of SSDI and a copy of your Dx - they DO NOT keep the docs; they just need to SEE them b4 they give you the placard that you put on your dashboard.
Not sure about STATE parks, however.
L
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Lita-What do you use for proof for SSDI and where do you send it? The Grand Canyon is on my bucket list (hopefully next year!). I did get Alaska and taking the grandkids to Disney World off my list. We go to the carribean every year for our anniversary, in October. This year it's our 35th, and we are going to the Mexican Riviera for 2 weeks.
lemondrop- sorry I did not do those drugs. I was first on Faslodex 1 1/2 yrs, then femara 3 mos, then Xeloda 2 1/2 yrs, then Ibrance 6 months, then Doxil 3mos, then Taxotere since May 2017,and Zometa once a month for the first 2 years, now once every 3 months. I'm 6 years into this stage 4 diagnosis. I was first diagnosed in 2005 stage 1. Lumpectomy, 6 weeks of radiation, 3 1/2 years on aramotase inhibiitors (I tried all of them and couldn't take the side effects. Good luck with your next treatment! It's wonderful that you went on that awesome trip with your kids. Sorry about the divorce and all the baloney you are going through! Keep getting through that bucket list!
My mother-in-law just got diagnosed with bc last week. She's 85 and is not sure what she is going to do. It's IDC ER and PR + HER2- (just like mine) and is .8 cm (mine was 1.5). She is scheduled for a lumpectomy and sentinal node biopsy (what I had too), the end of the month. She is stressed out about it (weren't we all?), but at least she has me who has been there, and another daughter-in-law who is an RN. My father-in-law is 86 (as she will be in Dec). They live an hour from us (since they sold there house here, and moved to there camp 15 years ago, that they foxed up and made into a house). The place that she is going to is a 1/2 hour away. She asked me how long was the radiation. I told her everyday M-F, and 6 weeks. She said she couldn't do that. She asked when they start after surgery. It's been 13 years for me, I told her I thought about a month. She's worried because one of her grandson's is getting married 8/18. She said she couldn't drive to VT (my FIL, has been having a hard time with his back and leg being in pain,so he hasn't been driving). We told her we would take them up (it's about a 2 hr drive), or one of there other 3 kids, or 13 grandkids can bring them up. This disease SUCKS!
In the 90s her yet again. It is suppose to be that way until Fri (then a high of 87!). Crazy weather we are having here. Keep cool everyone!!
Lynne
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Lynne, just bring them the initial letter Soc Sec sent you b'cuz it gives the date and the amount you're getting every month as well as your address. I didn't mail mine in...we went directly to the ranger station, but there's probably an address you can send it to if you check on line for National Parks disabled pass in your area.
L
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Hello Everyone,
Z, I’m hoping that this treatment works and you can get off to a speedy recovery. It is so nice that you and Iwrite got to get together and meet.
Curious, thanks for the info on mutation. I must be one of the 1/3. When they did biopsies on my live I was still HER2- but they found a mutation in the cell which I just found out I’m not eligible for trials.
I switched MOs and they seem to care so much more than just pushing you out the door or having a chemo nurse ask a question to one of the othe oncologist and he says I don’t feel like answering that right now. I just couldn’t take the neglect.
I hope everyone is doing well and fighting this fight hard. Love to all.
Anita
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Thanks for the info, Lita! We have a National Forest in our state, but no National Parks (unless that counts). I'll look into it. Thanks again!
Lynne
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Lisa - I'm two weeks in to Xeloda / Navelbine combo - Xeloda = 1500mg 7/7 & Navelbine = 50mg 3/7. So far so good in the way I'm feeling, I have a range of nausea tabs so that's well controlled, hands & feet are sensitive to heat and there is some numbness, but no more than I've had on other chemos. Doc gave me some high-dosage vitamin B6 to take and I'm sleeping really well. No blood tests yet, so can't tell you if its working but I'm hoping it is!
Tanzania & Zanzibar are on my bucket list - I'm sure you had a fabulous time!
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