Breast cancer...2008
MBC......2018 ( bone only)
Currently receiving Chemo
This new norm is unbelievable. To be in remission for 10 years is a blessing. Going through this journey again is really scary. I am glad that this group is available to learn that I am not alone. I have support from family and friends but know one understands unless they have walked in this journey. Thank you again sisters and brothers for being here for me.
Hello!
Thanks for sharing your experience. I agree that it is scary to be living with metastatic breast cancer and that no one else can understand what it's like unless they are going through it themselves. I try to look at it as a chronic illness, like diabetes or epilepsy, which are also long term conditions, but which can be managed with the right treatment. My oncologist refers to it as a chronic illness, and that makes it easier to handle. I wish you well with chemotherapy. Let's hope you can manage the side effects of your treatment and still enjoy a good quality of life. It's good to hear that your family and friends are supportive.
Take care,
Sophie x
Thank you for your reply. It is so nice to have others who understand. Today at the treatment spa 😀I met a sister that was her first day of chemo. We talked during our treatment, after treatment she gave me a hug and thanked me and I returned the hug and said no thank you. We never know when the warriors will meet up. But today I needed the talk and hug maybe more than she did.
You're welcome! That must have been such a nice experience. I would love to meet another woman in the same situation as me in person, but I haven't yet. The only women I know who have had breast cancer are those who have recovered from the disease, so I don't feel like I can really relate to them.
Sophie x
I haven't personally met anyone in my position either. It must have been wonderful to make that personal connection!
Wow! You give me hope. I also have mets to bone only. A few weeks ago I came down with pneumonia. Not realizing the symptoms I was having was not all side effects from a new med I was on Afinitor. Spent a week in the hospital and three weeks later still not clear, on third round of antibiotics. Stopped the Afinitor and don't want to start a new drug until lungs are clear. I have been getting depressed thinking will it be like this forever. Lost 25 lbs feel weak. Dr said if this round of antibiotics does not work it is back to the hospital.I was diagnosed in 2016. You give me hope that this is not the end, just a blip. It does feel better when I post and everyone knows how I feel. Thank you
Hi Jerseygirl,
I'm sorry to hear that you have had pneumonia recently. Hopefully you will soon be feeling better and not have to be hospitalised again.
Take care,
Sophie ❤
Thank you I hope it goes away soon.
I have had pneumonia twice, once viral and once bacterial. Both kicked my butt for months and I did not have cancer, at least that I was aware of! I can't imagine while on Ibrance. How did that go? Were your counts low to begin with, I assume.?
I was on Afinitor when the pneumonia hit. I thought it was just side effects from the meds. But I kept getting worse every day until I could not stand up, could not eat. Vomiting all day, lost about 25lbs. Then was told I had a UTI so I went on antibiotics. Went toER and they said pneumonia also. I am feeling better but back on antibiotics because still have low fever. If this does not work this week then back in hospital.
Thank you for listening, it means a lot.
Let's hope the antibiotics work for you. x
My prayers to you for your recovery!
If you aren't seeing a bc specialist onc, you might want to do that before even considering going back on Afinitor. Shortly after it was FDA approved, a good friend of mine died from acute pulmonary (lung) collapse. Neither of her doctors realized it was from the Afinitor and kept her on it and she died about 3 weeks after being admitted to the hospital. And I developed a lung condition (Interstitial Lung Disease) after a few cycles of Ibrance. The pneumonia may be a side effect of Afinitor and I'd certainly be wary of taking it again, but obviously I now have a strong bias!
I agree. I thought since my arm no longer hurt it did some good. The oncologist said if you can give a med 2 months some of the side effects will go away. I only made 6 weeks on it. I was going to the lower dose. But I read your other post about friend and decided to call today and stop the approval process for it. I will wait until pneumonia is gone then we can find something else.
That is why this site is so good. Someone may have information on a drug that we need to know. I did not want to post all my side effect, which were many because not everyone will experience the same thing.
But thank you I listened and will talk to my oncologist about something else.
Yes, I am always VERY leery of taking two types of treatments at the same time for two different illnesses. I feel that your body is already compromised and another drug makes it worse if you can avoid them. It's a continual challenge!!
I am so nervous not being on a second med. I get the Faslodex injections monthly and xgeva. But Afinitor was my second. I hope they have something I to replace it that does not have all the side effects. We will see!!
As a long timer with mbc, and one who has done well on the drugs that interfere with Estrogen, sometimes I find it difficult to understand those more recently diagnosed who give sooo much credit to Afinitor and Ibrance. These newer drugs have to be given along with one of the older hormonals plus in the trials that led to their approvals, they only added months and not years to survival. Those of us who have been living with mbc awhile are used to being on one drug, sometimes plus a drug for bone mets, or for those who dealing with a triple + cancer, a drug targeting the her 2neu receptors. I got almost five years from Letrozole (Femara) and had only limited progression in the primary site and some of the bone mets. Then I got over 9 years from Faslodex. We added Ibrance for a few months during year 7 of it, but I did not tolerate it well and was not at all nervous about stopping it. Early on, our plan was to use several hormonals sequentially, each one until it stopped working, and when we ran out of them or they no longer worked at first, we were going to go with some time on low dose estrogen. That used to be the only treatment for bc besides radical mastectomy. Some with E + have found that being on Estrogen for awhile will either contain the cancer or "reset" it so it responds again to the already used meds. In general, E + bc responds much better to hormonal treatment than to chemo, and some of us opt to never do chemo at all. That has been my plan. It really helps to concentrate on the long term and the big picture and not get too worried about temporary set backs and failing meds. There are so many more options than there used to be. Maybe my thinking would be alot different if I had been diagnosed at 27 rather than 57 or if I were freaked out by the whole idea of my own death. Cancer has certainly never been on my "worst way to die" list! Burning and dementia are...........
Hi PJBinMI,
I agree with you. It's good to look at the bigger picture rather than just the here and now. I hope I can carry on with my current plan for as long as possible before the drugs stop working and something else needs to be tried. I have not taken Ibrance or Afinator. When I met my oncologist for the first time, she gave me two options: chemotherapy or hormone therapy. I wasn't sure what to choose, so I asked for her recommendation, and she mentioned hormone therapy. So that is what I have been on since May and I am coping very well with it. My last CT scan in August showed I was stable with no progression and I am hoping the one I have scheduled for next Monday will also show that my condition is continuing to improve.
By the way, I agree with burning being the worst way to die!
Sophie x
You are certainly making me look at this condition differently. I was diagnosed in 2016, stage 4 met to bones. I was on letrozole and Ibrance for almost two years. I am new at this and when the oncologist keeps saying I need two meds I say ok. I am on Faslodex injections since July. Then we added Afinitor, which did not work out. I get nervous not having the second med. You were on Faslodex only for a few years. Maybe I worry to much. I really appreciate you answering my post and thank you so much for the information.making me see this a different way. I will try to relax a little and check things out.
In the world of mbc, having been on Faslodex for over 9 years is not "only a few years." I am really lucky to have had it keep the cancer under control for that long and to be at 14 plus years and only on my third line of treatment. THis whole second drug thing is relatively new and I'm wondering if your onc is somewhat young and has not had the expereince of having patients do well for years like I have, with each single drug. i have a bias, that's for sure, and it's that these second newer drugs are being given way too much credit.
Thank you, I will be asking a lot of questions at my next appointment. I will be having a petscan in November, so we will see if the 6 weeks on Afinitor did any good. But my tumor markers went up at my last visit. I would love if the Faslodex was enough since I do not seem to have any side effects from it.
"...being on Estrogen for awhile will either contain the cancer or "reset" it so it responds again",,,, Are you sure about this? I find no research papers to back that up. Seems odd, or perhaps I don't understand correctly? Please explain, as I would like to go off the Ibrance (after 6 years) and continue with only Letrozole. Thanks
Jerseygirl46
Sending healing thoughts to you. Recovery from Pneumonia takes time and lots of rest. I hope you feel better very soon.
Thank you so much. I guess this is what we will go through. But due to the cancer our healing time is longer.
Ten years between initial bc diagnosis and finding mets is wonderful and suggests a slow somewhat unaggressive group of cancer cells. Some of us with bone mets only do really well for a long long time. I assume you are on a bone med like Zometa or Xgeva. These meds had been like "miracle drugs" for bone mets as we now rarely die just from bone mets. I was diagnosed over 14 1/2 years ago with bone mets from the get go and still have only bone mets and have done really well. You'd not guess I have an advanced cancer if you saw me out and about. I am fatigued but I shower and dress every day, walk our dogs at least twice a day, do the laundry, grocery shopping and bill paying and cook dinner about 3-4 times a week. A lot less than before cancer but I am also older and who knows what I'd be doing now without cancer! I hope you will do as well.
Your message is so encouraging for those with bone mets.Gives much hope and courage for normal enjoyable living, thank you!
Thank you for your support. I pray everyday for ten more years. But I live each day at a time and make more memories for my family. I prayed to be here for our daughter to get her PHD ( Sept 30). I was on the front row 😀. Now I am praying to be here for the wedding and grandchildren.
You must be so proud of your daughter! A PhD is something to celebrate, that's for sure!
Yes, comes as such a shock when you are in remission for so long. As for me: BC: 2000. MBC: 2017. I've been on the Ibrance/Letrozole combo since November 2017. God bless you, and many prayers for another long remission for both of us! XXOO Linda
I was also in remission for 11 years and then am facing it again. It is scary but the women on this sight are a great support. Best of luck to you and let's pray for another 10 years and more!!!! What chemo are you on?
I was in remission for 11 years. I was Stage 2 with no lymph node involvement. I did chemo, radiation and mastectomy and then it popped back up again 2016. Breast cancer had spread to both of my lungs and the lining of my lungs. My scans lit up like I was a Christmas tree. Now I’m Stage 4 terminal. No surgery or radiation for me so I was slammed for an entire year with 3 different chemos. Now I only have one little nodule that shows up. I had to go through hell to get to where I’m at now and I feel really good. I’m on Ibrance and Letrozole now. So ... hang in there and hang on to faith. We’re not statistics. God has great blessings and plans for us.
I know what you mean-- I was 13 years out when it came back the first time and then it was 7 years after that it metastasized to my bones and nodes. I couldn't believe it-- makes me hate when people announce they are cured. BC can come back so many years later-- we all need to stay vigilant !!
I am so glad for these groups. 10 years no evidence of disease. How heartbreaking to be thrust into metastatic after all that time. I had 7 years. I was however, diagnosed originally metastatic. It was still difficult and heartbreaking for it to return. I feel for you. It’s a scary path. I am glad you found this group with strong women who are willing to help at every turn.
Welcome warrior. I had an 18 year hiatus with mine and had a swollen lymph node in my armpit last year and boom, here we are. An older sister of mine who has just gone through breast cancer for the first time confessed to me that she didn't give me enough support the first time now that she has gone through it. I told her she didn't know and now we have walked this journey together.
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