Hello All,
Had my scans yesterday and I have some bone progression. Haven’t had any bone progression for 8 years. I’ve got lobular and ductal, so did have lobular progression two years ago. Anyway, I know there’s lots that can be done, but I know you all understand what the word “progression “ means like no others can. Just a bummer of a day…
Nocillo we all have these days and I pray for you to be able to see a better day tomorrow.
Thank you! I don’t know why it drops me so low. I know it’s coming eventually. Hearing it makes it more real I guess.
I'm waiting to have my first scan following beginning treatment 3 months ago, so I can't say I know how you feel but I get from other posts that its depleting waiting for the report and all we hear is 'stable' or 'progression'. If its progression the depletion ramps up. I feel it must be like when we are first diagnosed, it takes a few days to get our head around this new you and how its going to be dealt with. I hope you have supportive people around you and take all the time you need to move forward. Regards Susan
Hi Susan! You are Very wise from just 3 months in! Wishing you years of good health! I’m a 63 kiwi- American!
Thanks for the wishes of years of good health, its what I am hoping for. Wish I had known you were here a few months ago, would have loved to have met up. All the best Susan
Ao sorry to hear this! I don’t know if anything can cheer you from this news but at Xmas when I progressed into my liver and belly, but I had just had my normal scan and they declared stable disease… again! Lobular so hard to see.. when they did see it and finally switched med to capecitabine, I stated feeling lads better… and fatigue went away… now I am riding my e-bike for 1-2 hrs day… this time feels like a gift because during the year they kept telling me the scans showed stable disease, I thought i might die… I could feel myself fading away and since no one saw anthibg on the scans, I thought well… if this feeling so unwell keeps then…well, I thought I may pass away pretty soon. But then, I switched to cape and finally figured out how to manage the HFS and now I feel well most of the time again. So I am relaying this to try to give you hope about the change that is coming for you.. and also how marvelous that you have had such a long long run with bone only. I would think that also bodes well for you… praying your indolent disease continues into your next line!
Thank you. I’m thinking this must be the ductal, but who can be sure? I’m glad you are doing well again. Except for the few months before they found the lobular in my stomach, I’ve had a pretty easy run at this. My oncologist left for a better job, and I haven’t seen the new one yet, so it’s just extra unsettling . Thanks for listening.
Is Capecitabine horribly expensive?
No, Xeloda/capecetabine is wonderfully cheap, at least in the US! It’s an old drug so on my case at least it was about $190/month total, mostly covered by insurance, I paid only $7! Very different from the fancy new $13K/month drugs ….
Do you have ESR1 mutation? I do and would like to follow those that do.
Not that I know of.
Thank you. Mine was discovered by Guardiant test.
That’s what I’m thinking. The test will tell.
so cowgirl- the ESR1 mutation means that now you prob won’t respond to estrogen based therapies? Is that right?
My onc still has me on Kisqali and Faslodex. I think she is waiting until my petscan at the end of Aug. The April petscan showed improvement in left sacrum and left femur.
no just mean not respond to AI
Your reaction is so understandable. Waiting is the worst, and it takes a while to adjust to these trigger words like “progression” that plunge us into sadness. But then you adjust and somehow the sadness goes away. Your onc will have a plan and you will move forward again. Sending best wishes to you.
Dear friend, I'm thinking of you with love and sending healing energy.
Thank you!
Praying and asking God to give you strength and healing moving forward.
I'm so sorry for your news. I hope that when you talk more with your doctor, you are able to discuss some options for treatment that will help you. Sending you hugs and prayers.
Thank you for sharing. 8 years is a great run. Of course, I realize— in this moment— that won’t make you feel any better🥱. I agree with the person who said a Progression after a long, stable period is like experiencing the shock of the original diagnosis all over. I am also very encouraged from those 8 years that you will stabilize of the cap and have another good run. Very hopeful. Wishing you all the best 😻
Being stable for 8 years is hugely promising! Suggests the cancer cells are not aggressive! I'm a long timer, over 19 years since diagnosed with stage IV lobular bc, bone mets only. I got nearly five years from Letrozole, over 9 from Faslodex, over 4 from exemestane, and then early this year, onc told me the cancer was no longer E+ and is now triple negative. I've met alot of others with MBC, and many have gotten a long time, especially when one med works for 5 years or more. I hope you can find inner peace about all this! MBC is not at all easy to live with!
Great news for you! It’s not easy to live with and we can look so normal on the outside. Thank you.
sending pray and positive thoughts 😍
Sorry to hear that; my last pet showed the same. Hip, neck, etc…
I recently learned about boron / borax and Diatomaceous earth for bone strength and healing…look into them if you’re open to other things. People have had lots of success with them and so far, for me it has really helped with the pain, and it’s only been 2 weeks.
There’s a doctor who does excellent lectures on it, I think his name is Dr Jorge Flechas. Check out his YouTube vids, they’re full of really useful info.
I just looked up Boron and it says it should not be taken by women with estrogen sensitive breast cancer.
That question comes up a lot on the boron forums and there are some very differing opinions to that. There’s a researcher / author on the topic who says it’s not a risk, but I can only do what works for me, and others should do the same.
But for me personally, the risk of being without essential bone building supplements like boron or silica is much less than the risk of boron affecting my estrogen - and I do have estrogen positive as well.
I get it. I hate that word! But, we just have to have faith in treatments available! It's difficult but by the same token we are lucky they exist. Love, Marianne
Hi Nocillo-, Yes, progression possibly the dirtiest word in the cancer vocabulary. I had it after only a little bit over a year on IBrance and Letrozole. I just started IV chemo (Taxol) at the beginning of July. Onc gave me other choices, but I wanted the one the would hit the lung progression the fastest and hardest. I am doing 6 infusions then scans, if it is working we will do 6 more treatments then I would move onto something else for maintenance. (Possibly Faslodex) I wish you the very best on your next road and I keep all of us in our prayers. Keep hope that the next treatment might be the winning ticket!🤗🙏💕
Sending prayers and hugs your way. 🙏🙏
I am sorry you are on this emotional roller coaster. Sending wishes for your emotional and physical wellbeing.
I'm sorry Nocilla for this new development. That word 'progression' is the most feared of all of us fighting stage 4 cancer. I can truly relate as back at the end of February after a 5 year run on Ibrance/Letrozole and getting scans every 3 month (CT & bone scan) with the results being stable I honestly was in total shock when my oncologist said "unfortunately there is more progression that we can't ignore and we need to change treatment". A little back story is that I was De Novo bone only since 2018 and have had throughout the 5 years had slight bone progression show up on scans but stayed on the same treatment and wanted to ride out my treatment as long as I could. This 'slight progression' happened 3 times in my 5 year stint until the one at the end of February that was different and even I could see it. I know how to read scan films so I had the proof. Have you talked to your oncologist yet to see what' next?
We are all here to support you and my moto is bone progression is way better than when it gets into the major organs. Take care.
Thank you. Yes, I’m very grateful that my soft tissue organs have not been affected, except for my stomach lining and that is under control. I wish you continued stability.
I was getting ct scans every 3 mo then 6 mo the second yr stable and now I think yearly. I’m starting year 3 as stable. You had scans every 3 mo for 5 years? I will ask why but I am somewhat glad. What is your plan now? Do you get xgevia shot every 3 mo?
I’ve had CT scans every 3 months for 8 years. Bone scans too, and then they were switched to every 6 months. I get Zometa every 3 months. Not sure yet what the new plan will be.
I will continue to get both bone scans and CT(CAP) every 3 months into the future. My healthcare does not fund Xgeva so like Nocilla I have gotten a Zometa infusion every 3 months since my diagnosis. I imagine the change in your scans is a good sign that your disease is well under control. In my 5+ years my extensive bone mets just alternate between lytic or sclerotic. They have never decreased. Take care.
Yes they have been stable so maybe that’s why. BuI nocillo was progression free with scans every 3 mo. So I’m wondering the move by my Dr. This was a good thread. Encouraging. I didn’t know I would be here 3 yrs later.
Hi Praising ...I think we can all relate to your comment " I didn't think I would be here 3 years later" when first diagnosed. I certainly thought the same but now I am over 5 years and daring to dream that I might make 10. Maybe not but thinking positive thoughts is crucial to fighting this horrible disease in my opinion. Take care.
when they vary from one to the other do they hurt? Like bone pain? Would be nice to think that some pains are just cancer dying off?
Hi Bettybuckets. The varying between lytic to sclerotic and back and forth didn't start for me until several years into my first treatment so I didn't associate it with cancer cells dying...although a very nice thought. Unfortunately I am one of those people who have experienced horrible pain from my bone mets from the beginning so when they were lytic or sclerotic the pain wasn't different. What is different is that you are way more prone to pathological fractures if they are lytic and I found that out the hard way. My hubby and I booked a trip to a resort island and while I was there I was just getting up from a table one evening when all of a sudden my shoulder and hip fractured. Let me tell you what a nightmare that is when you are in another country....anyway another story. So I certainly after all the trauma I had to endure don't take bone mets lightly.
Oh dear thst sounds really awful for you! I have heard that the bones can break even rolling over in bed! Did you get on some zometa or xgeva and get some relief… do the bones heal up .. eventually? So many questions. I worry that may in my future but maybe not because from bone it has now spread to my liver and all around. So I try to to stress about where is it going or how bad is it going to get. That will just wreck the here and now. So today I swam in the ocean and rode my bike. A good day!
Thanks Beth. I am not going to lie it was awful. I needed a 7 hour surgery to get a total hip replacement and a total shoulder replacement done. My surgeon said it was the most diseased hip he has ever seen. Then a stay in rehab and a slow recovery but I have worked hard and refuse to let this define me. I am now back to biking 10 miles a day which helps my rehab. Walking isn't easy and I still use a cane but of course my other hip is just as damaged as the one that fractured spontaneously so I am careful. I have been on Zometa infusions since 2018 but trust me bone fractures can still happen obviously.
I will also add that I have had probably about 10 pathological fractures on my spine as well over the time frame but they will eventually albeit slowly heal on their own.
Great picture! Glad you are getting out and enjoying life. Take care.
Hi Nocillo, I'm so sorry to hear that you have had some progression in the bones. It is a road all of us encounter at some point or another, always hoping to prolong getting here. You are not alone in how you are feeling and the disappointment that entails from progression. Luckily, there are many, many treatments and this road we are all on has been made much longer and with better quality of life for most. I hope that you are feeling a bit better about the bad news, and ready to fight on! On a good note, Merk just released news articles that Keytruda is having smashing success not only with triple negative, but with HR+ breast metz and high risk earlier staged patients as well. They are talking home run on this one with "significant" NED on patients with extensive metz and they also used the term "eradicating" tumors as well as free cells, leading to no more progression! Fingers crossed sister, we may be looking at a miracle! They are toward the end of their phase 3 trials, so with some luck and prayers it may be approved sooner than later! Take care!!
Thank you so much. As you know, it’s a roller coaster that only we can understand. Your note is very thoughtful and thank you for the info about Keytruda!!! Fingers crossed!!!
hi. Praise God for your long run. It’s been 3 for me. Did you take xgevia? I’m on that every 3 mo and exemestane. Scan 6 mo but going to yearly I think. Where did it progress? Mine was in my neck. See the dr for labs in 2 weeks.
That really sucks, but I always try to remember that tonight I am home with my family, and will probably be here tomorrow too. The rest is up to God One day at a time, and tomorrow is a new day to wake up and start again. Sending prayers
Exactly. Every treatment day I tell myself I’ll sleep in my own bed tonight!
Yes. Ans yes.
Complete bummer. How you doing mentally after 3 months of progression notice.
First Progression - Terrified
Bone Metastatic cancer treatment
Progression in my bones. 
Bone Mets
Bone mets: Are leg aches a sign of progression?
