Bone Mets Thread
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Hi Amy/ABC...so sorry you have to be here with the rest of us. But there are so many nice people here that can help in so many different ways. As far as venting, we all have to do it now and then so vent away. I wish you the best in getting a treatment plan quickly. Please keep us updated.
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Pamela, If it's not cancer related, you might try taking Magnesium. (I take 300mg daily) it totally stops those deep seated muscle aches. The theory is that the soil in the US is so corrupted by years of herb/pest applications, that most in US don't receive near enough Mag from from foods.
But don't take my word for it, search the web, the info is out there
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hi there
I am posting on behalf of my beautiful mother - who was just diagnosed with bone metals to her sacrum- right pelvis. One tumor - but large .
Her breast ca was diagnosed in May of 2018, and this recent news in October , while I suspected cancer return because of her intense pain- was very shocking . im terrified and heartbroken and just looking for some initial questions to ask her oncologist- maybe some positive stories - I dunno.
58 years old-
Breast ca was progesterone + her2 -
Treated with lumpectomy, sentinel nodes all negative -
Chemo and radiation.
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meghaneloise, it is shocking to hear about the metastatic diagnosis but in time there will be a path forward and hopefully your mother will respond to the treatment very well. Since she is hormone positive, anti-hormone therapy may be the first line of treatment.
I was diagnosed with bone mets in 2013 and there are a lot of women on these boards who are doing well after 10+ years of bone mets diagnosis. We have plenty of options.
It is so nice that your mother has such a great supportive daughter!
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Meghanelouise, I am in total agreement with S3K5. Receiving this diagnosis is beyond shocking, but the shock does wear off, and a plan begins to emerge. Try to take a deep breath with your mom, start reading legitimate material, and find out what the oncologists suggest as the best plan. I am 4 years out from my Stage IV diagnosis and living well. Many of us are. My very best to you and your precious mom.
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MeghanEloise,
I'm sure your mom is terrified, but please let her know that with only one bone met she is considered oligometastatic, and with radiation and anti-estrogens/Ibrance could be stable for years, or even be among the 25% who are effectively cured just by that. I'm thrilled to still be around 5.5 years later, despite extensive bone mets
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Meghaneloise-
I echo what the ladies above have said, and they have been surviving with this longer than I have. Just to note, I had a large sacral tumor, right pelvis as well and damn that thing was painful to the point where I was on crutches for a few months and then a cane in order to walk even after 5 sessions of SBRT radiation. That tumor is completely resolved and now I walk normally, ride a bike, etc. So while they will probably radiate it, be aware that it may not be an immediate recovery although there certainly is pain relief!
As Cureious noted, one met is better than several so she has that going for her. You may want to ask the oncologist if they will be testing the tumor to ensure she is still hormone positive. Was she on any sort of hormone therapy pills?
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Hi everyone, it’s been a couple months since I’ve been on here, I finished 15 rounds of radiation to 3 different areas (5 each area). I started Ibrance about a month ago 125 mg. But, since September I have had to go to the ER 3 times now. First 2 times my potassium was very low, my calcium in blood was high and my hemoglobin was low (anemic). So I needed blood transfusion. I recently on Wednesday had to go Back to ER Because I had done my labs day before so MO called to say my hemoglobin extremely low so go to ER to get a transfusion. I’m home now. But, question is do any of you ladies have this issue. My MO is taking me off of Ibrance for 1 1/2 weeks until I see him again. Once back on Ibrance he plans on lowering my dose. Thank you in advance for your replies
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Wow, Hopfull2, I'm sorry about your low hemoglobin. I've not had that with Ibrance, but I do, like many others, get a low white cell and ANC count. I've had one one-week delay in starting my next cycle of Ibrance, and my MO recently reduced my dose from 125 to 100. I just started cycle six and this is my second cycle of 100 mg.
My calcium was slightly elevated only one time and that was right before I was diagnosed with bone mets. My MO told me to stop taking Calcium supplements. I only take Vitamin D3 and magnesium along with my Ibrance and Arimidex.
How do you feel?
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thank you sunshine, I was diagnosed in late July. Had to have surgery in August to remove a lesion in my skull thats was causing double vision. Then did radiation to a couple parts in body. Now on Ibrance and letrezole. But since after surgery in late August I’ve been Down hill. It’s hard for me to walk. I use a walker in the house, I use a chair inside the shower and a wheelchair to go to dr appts. All cuz my bones ach a lot I walk extremely slow. I feel I was just diagnosed and I’m already this way. I hope it gets better. But it’s depressing cuz I’m only 41
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Welcome Amy. Sorry to find you here but this has been a great group for support. I'm 43 and was diagnosed stage 2 at 40. My stage 4 showed up at 42. The waiting game is hard. I'm in Oregon and things here moved pretty fast. I had my diagnoses, surgery and treatment started within a month and a half.
Thanks NicoleRod for the link. I will have to check that out. I changed my diet drastically too after one of the intensivists at work gave me a chapter on cancer from Dr. Michael Greger's book "How Not to Die" which, at the time, I found ironically funny to give to someone just diagnosed with breast cancer, but I digress. It changed my perspective completely and started me down the rabbit hole of diet as medicine. I enjoy researching nutrition and all the things I can do outside of the medical machine. I tell my patients all the time the best medical care system in the world is the one you don't have to be a part of. I am a strong advocate of preventative medicine, nutrition and blending Western and Eastern medical principles.
I'm struggling the last couple of weeks. I have been working really hard to stay active because the weight seems to be creeping on since being on hormone blockers, particularly the exemestane. Since my mets are spine, hip and potentially left shin I am focused on reigning in that burden on my torso and legs. Here in Southern Oregon we have finally entered "wet season" where the dark comes early and it's been cold and rainy. I think that has something to do with my pain. Still, I can't hardly get up from a chair without difficulty and I have to hobble, hunched over for a few steps before I can walk upright and not have crushing pain in my knees an hip. It's so frustrating for someone who has an active job and was routinely walking several miles daily. I still can, it's just been more of an effort lately. I had been going to the gym and swimming because that is easier on me but with the Covid surge here we are shutting down until December and the gym won't be open. I did get an appointment with an oncology orthopedic surgeon in Portland so hopefully I will get an answer on what this is in my left shin. I am in hopes he will have some suggestions for me. My initial visit is Dec 2nd over Zoom so that should be interesting.
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Hopeful
I'm so sorry to hear about the hemoglobin issue. How scary! I hope that the break and the lower dose can give you some relief. Sorry if my previous post seems out of place. I was responding having read posts on a different page not realizing I hadn't read the entire thread and I missed quite a bit! Ugh, post work shift fatigue. My brain has been scrambles lately.
Meghaneloise - I hope this forum can provide you some hope and helpful suggestions for your mom. It is a shock and it's hard to adjust to. The people here have been a huge part of my hopefulness and information. It's taken me about a year to get in to a comfortable head space with everything and focus on being positive and proactive and not fearful in my treatment plan and outlook on the future.
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Hopefull2, I am sorry to hear of your troubles. You and I are on a similar timeline, it seems. I was also diagnosed in my 30s in 2016, and then with mets in July of 2020. My bone mets seem to have just exploded in only a few months, and it is really discouraging.
If you are having trouble with your counts, can your MO switch you from Ibrance to Verzenio perhaps? Or even to Xeloda? Those two drugs are easier on your counts than Ibrance, but I'm sure your MO knows that. I hope you find a good solution, and keep us posted on how you are doing.
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Hi All,
Amy, welcome to the thread. While I’m sorry you find yourself here, as others have said, you will find much support and caring.
Emac, sorry to hear you are having such a time of it. I can certainly attest to the hormone blockers and weight gain. While my weight is sitting at my normal prior to some weight loss when I was first diagnosed, the Faslodex has made it sit around my middle. Grrr...
Hopefull2, I had a similar experience with Ibrance. My hemoglobin went on a precipitous decline once I started even after a dose reduction. My MO pulled me off at about five months after I started as I was at the point where a transfusion was in the cards and they don’t typically like to do that here. I’ve suggested we might try again but his comeback is always “That was pretty low hemoglobin”. That’s one of the reasons I went to Verzenio insteadas it doesn’t have the same impact on the blood Something to consider.
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FINALLY GOT PATHOLOGY!!!
I received this via online records and have not seen my doctor yet. I am scheduled to see her Monday along with getting Zometa. Assuming she will then tell me her plan of attack!
Looks like I am ER+ PR+ and gata3+
My question is what about Her2? I see nothing here? Or am I missing it? I've attached it hoping you all could help.
I'm so thankful I cut all meat and dairy plus sugar on 10/12/2020
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ABC I don't see your HER2 status on there...but that probably means that it hasn't changed from your original cancer What was it originally HER2-??
Just a thought...regarding cutting sugar...I did the same thing..I cut sugar and almost all carbs when diagnosed...I wound up losing so much weight and felt awful..I was like 89lbs....and my cancer still progressed.... I am not saying you should EAT sugar...but there is a thread on here that I started...(look for it) its about that...and there are women that are 5 years NED and eat what ever they want....so go figure. I am gonna say this: If you enjoy not having any sugar etc..then do it...if you don't feel good doing it (physically) cut yourself some slack...and research it...Breast Cancer, especially hormone positive is a beast all its own..now if you had Esophageal cancer I would say cut out ALL and EVERY drop of SUGAR IMMEDIATELY it feed primarily on sugar. If you are the type of person that drinks a lot of soda...and eats a lot of sweets and cakes etc..I would say yes cut way down and you may see a difference...but ...if you are like I was and you eat relatively very healthy no soda...sweets in moderation...I don't think you are gonna see a difference....
Just my opinion.
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thank you so much. It is a very strange this diagnosis- has turn our world upside down .
She is using a cane - hobbling around. She just finished 5 sessions of radiation and we are hopeful that it provides some relief. As of today she is just very nauseated and suffering with diarrhea. I’m thinking from the RT but I’m no expert.
She had a biopsy and we are awaiting the result of that.
Again I thank everyone who replied - I’m not a tech person or anything and this forum stuff is new to me but I do check it daily since the diagnosis - I appreciate all the advice and encouragement . My mom is a fighter - truly is - and me with my 4 siblings will do all we can to help her when she is low. I just want to see her smile again! Riding a bike , although we just did this a few weeks ago riding her grandson to school- is something I Dream she will be able to do again-
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nicholerod.. originally I was her2 positive back in 2012. I eat sugar just natural sugar such as fruits and such but there is no way I'm adding in any sugars. I have pretty much gone vegan and am okay with it. Just so weird it doesnt state it!
Also I have cut meat 100% and only eat eggs limited and local grown cage free no HORMONES! Zero dairy.. If I choke this out then I may add in some here and there but until I get a handle on this no way!
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Cool if that works for you
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Does anyone in this group have the same DX as me and told no chemo for Treatment? Only Hormone Blockers?
8 years ago I was infiltrating ductal carcinoma stage 3 with lymph node involvement.. ER+ PR+ her2
Plan then: A/C and taxol plus a year of herceptin followed by a Dbl mastectomy 22 nodes removed, radiation and full stage reconstruction
Now years later I am still both ER+, PR+, Gata-3 but its only in my bones. Lytic lesions with one on my spine breaking out into my spinal canal.
went to the MO today we discussed the treatment plan she saw fit and this is it:
Faslodex injections, Zolodex injections, Zometa
No chemo, no radiation..
She also realized my chart was lacking a brain and her2 testing. so called for that to be done.
I'm beside myself with this since my whole T3 spine is red hot on a pet scan at 14.2 suv. And another 11.9 on my ribs along with other places in my pelvic bone and chest plate. I have never heard of no chemo as part of a treatment plan. I am okay with blocking the estrogen but seems it will only stop it from progressing and not get to the root of the problem?
She also told me quiet a few of my lymph nodes are hot too..
It's like I'm happy but scared as hell at the same time.. I am headed for a second opinion but would def love some feed back from you.
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Hi ABC,
You will find that treatment for MBC is quite different as the focus is not curative. Instead the focus is holding things steady for as long as possible while maintaining a good quality of life. Unfortunately, for most of us, once the cancer spreads there is no way to get the genie back in the bottle and so aggressive chemotherapy is typically off the table. I don’t think your MO means that she will never look at chemo but that is not her first choice. This is a good thing as most of us get more longevity out of hormone treatments and can live pretty much normal lives whereas chemotherapy treatments seem to keep things under control for much shorter periods of time.
Radiation is used in MBC primarily to control pain (with the exception of interventional radiation which folks will mention on the liver thread or radiation to the brain - both aimed at knocking back the tumours), particularly with bone. I believe someone mentioned that you might be oligometastatic with only one tumour but that doesn’t appear to be the case so zapping the hot spots may not make much sense. (There are likely many more tumours that aren’t showing up yet.)
In my case my MO likes to go back and forth between hormone treatments and chemo but hormone treatment would be his first choice as long as you don’t have a lot of symptoms to get under control (it takes a bit longer for hormone treatments to show they are working). He started me on chemo because I had a lung full of fluid. As it turned out, the chemo wasn’t effective so we switched to a hormone treatment anyway. I have changed treatments a few times before finding one that stuck but I’ve been on Faslodex for almost three years now. A second opinion is a good idea but rest assured, hormone treatments are a pretty powerful arsenal in fighting the cancer. I would ask about possibly adding in Ibrance or Verzenio though
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I think you need those HER2 results especially since you were originally HER2 positive. If you are again, standard of care includes chemo. Usually a taxane chemo for four months or longer....plu Herceptin and usually Perjeta, indefinitely.
if you find out you are not HER + this time, then it's possible you won't need chemo0 -
sadiesservant:
Just hearing someone else say they heard of this or explain it to me that way helps! Thank you😊 still gonna dig for a second opinion for the feedback and I appreciate you! It's hard to adjust to hearing no chemo.. even harder I find telling friends and and family. Their first instinct is I'm progressed so far the doc see so reason to give chemo.. 😑 which doesnt seem to the the case.
Olma61:
I cant agree more! Just not sure what they didnt get that Peice of the puzzle with the rest of testing.. trying to hold faith this is the right path for me.. but again so hard at times to trust it!
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Sorry ABC what is it that you are happy about?...I am only reading that your scan lit up with a lot of lesions? Are you happy that she said no chemo???
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What a relief to find this thread! Formerly diagnosed with stage 1A IDC in 2014, recently found out that a lump and at least one lymph node tested positive again at the end of October so I am thinking stage 2+. After a precautionary PET scan, Nov 4 I was diagnosed stage 4 with lesions on my spine, hip, and rib. Starting radiation on Thursday, meds (Ibrance, Faslodex, Lupron, Zoledronic acid infusion) after Thanksgiving. I haven't read through too much on this thread but I am happy for the support and people who understand and are LIVING with this diagnosis. I am 43...
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Hi Jenn,
You may want to pop in the Ibrance thread as its also pretty active and a lot of good information. Ibrance is very tolerable once you get to an appropriate medication level and easy enough side effects. Are your bone mets causing pain or?
In addition, sorry, did you say you have a new lump and lymph node? The de novo thread has us ladies who are on the Ibrance regimen but still trucking around primary tumors. While you aren't de novo, the topic of excision comes up frequently and there are a handful of us early 40s ladies on there as well (I am also 43).
You may want to fill in your details so they appear in your signature every time you post, that will help others in the future.
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Hi Jen..welcome..I am relieved you only have bone mets and no liver involvement. The Ibrance thread is great and moves rather quickly
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Thank you Nicole and Sondra...
No pain thankfully, I found the small lump and got biopsied, lump and at least one node tested positive. The bone met was found on the precautionary PET scan the following week. I will definitely check out the Ibrance thread that you both recommended. I figured out the settings too : )
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nicolerod. Yes it's like I'm happy she said no chemo cause I've been there done that with my last bought and it can be tough stuff.. but I'm nervous not to have chemo at the same time 😥
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ABC...When I was first diagnosed with mets I thought I would have to have chemo too. I asked the doctor why not and he said 'why have chemo when there is something better to treat it'. So I was relieved because I was dreading chemo after having TAC chemo the first time.
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