I was diagnosed with stage IV mbc one year ago. I had rather significant amount of disease. Primary tumor in breast, several lung nodules in both lungs, and extensive bone mets in spine and pelvis. I was started on Ibrance and letrozole. I did well for 3 months but at the 6 month PET scan I had progressed in my bones and 3 sets of lymph nodes lit up. I went off meds and was put on Fulvestrant. I then was hospitalized for severe shortness of breath and was discharged home wearing oxygen all the time. I was quite depressed and convinced I was on a fast downward path. When I saw my oncologist I shared my concerns and asked that we be as aggressive as possible. We started me on chemo (Taxol). I received it weekly for 3 weeks with fourth week off. I tolerated it well except for the fatigue. I received 9/12 infusions before another PET Scan was repeated. I also received a week worth of radiation to my sacrum as I had a lesion there that was causing me pain.
To my delight, the PET SCan showed full resolution of all tumors and infant some areas of bone growth (also on denusamab). So nothing on PET lit up meaning no metabolic activity even at the cellular level. I can’t tell you how happy I am and so I wanted to share. Miracles can happen! I am though quite fatigued and now my bone mets pain is replaced by pain from inflammation from radiation. So I suspect I will need a few months to get back in condition and overcome fatigue from radiation. The plan is to continue chemo for 3 more cycles then discuss switching over to oral therapy. Sorry to tell my whole story but I see a fair number of newcomers to the site and I wanted to share m journey!
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Purple60
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What amazing news. Praying for continued success. Did you get any swelling of feet and legs? Did you have any neuropathy with your treatment. I am on Taxotere for liver mets and have swelling in abdomen, feet, and legs along with neuropathy in my feet.
I can't tell you how incredibly timely your post is. My Ibrance journey was terminated yesterday and I couldn't help but feeling it could only be down hill from now.... Thanks forbtaking the time to share that fantastic positive testimony... It will act as my medication to stay positive until my new treatment start! And many congratulations !
That's amazing and thanks for sharing it definitely helps everyone stay positive especially us newbies.
Can I just ask which lymph nodes it was in? Ive got it in neck nodes and chest ones and I get really breathless. Nothing as bad as what you seem to have had but Im worried it could get worse. The neck ones seem to swell up and down and squish my throat a bit - did you experience any of that. I mentioned it at my last appointment but they don't seem to think its of concern. They listened to my chest and to be fair my oxygen levels were fine BUT that's sitting down in a chair - problems are walking, climbing stairs, even just bending down to pick something up can make me breathless.
Did you have any radiation on your nodes?
They did send me for a ct scan though and results are today so I'll see what comes from that.
Sorry, I seem to have ambushed your post but it's the first time I've noticed anyone else mention it in their lymph nodes. Hope you dont mind all the questions.
Anyway congrats again on your awesome news. So pleased for you. Xxx
I had extensive lymph node involvement that caused me to be short or breath with exertion. Thats what brought me to the docs and dx with mbc to the lymph nodes especially in the thoracic region, neck, lower back, left pelvis, and a pleural effusion. I have been on Ibrance and Letrozole since October and the last CT scan showed resolution of lymph node involvement but pleural effusion still there. My shortness of breath has totally resolved.
No ambush..just good questions. So my lymph nodes were in the same places, chest and neck. It took a lot of convincing and perseverance on my part to get docs to understand my difficulty in breathing. It started out like yours but all xrays, and tests were always no change. It took me going to urgent care when one day I couldn’t get out of bed to go to the bathroom without being breathless and heart rate going up. And even then I had to advocate for them to keep me in the hospital. I couldn’t believe they felt giving me steroids and sending me home was appropriate. In any event, ask to be referred to a pulmonologist. They finally diagnosed it as lymphangetic spread. That is when I spoke with oncologist to say I wanted to be aggressive as I refused to have a new baseline with home oxygen!
Thanks for the advice. Today been told the cancer is presenting as plaques in chest cavity and even if we kill cancer will leave scar tissue so wont be improvement. Onc told me this is my new reality. Ive not had time to research yet as its my birthday and have spent all day answering messages. I need a PA lol. Im going to look further into it so your advice is invaluable. I cant take things at face value no matter how much my onc wants me to 🙂. Asked for bloods print out n she said well we'll tell you if theres a problem you wont understand them. I said its ok I'll learn 😃. Also asked dif between a CT n PET scan and she said its too scientific to explain. Haha. Ok Ill just google its fine. I know its cos theyre so busy but I cant help being inquisitive lol. I did get the bloods print out though haha. Xx
They should be answering your questions, no if’s ands or buts as my mother used to say! Is it possible to get a second opinion or change your oncologist to someone who is a bit more patient centered?
Thank you. I wanted to share to give hope. I was feeling like I would never get here and that my outlook was bleak. All I can say is we have to be strong and be our own advocates because our doctors truly care but we should care more.
That’s great and good to hear. Every treatment is different and I chose not to do chemo and I am so glad that it resolved in 5 months on letrozole and Ibrance. Only one node lit up -left axilla with the tumors reduced to scar tissue and the rest up and down spine sclerotic -left femur bone as well. I will have the yearly done on sept the 9th. Everything hopefully will go ok-i must admit I do pray a lot to the saints and God🙏Just rest and do what you need to do from the fatigue. I have some too and I can’t imagine from that you’ve been through a lot. Well we are on this journey called MBC and we will get through it. God bless🌹
Yessssssssss Sister/warrior God is good, and answers prayers. I am so happy for you. C-E-L-E-B-R-A-T-E. with your loved ones. Don't make any sudden crazy movements while dancing, I don't want you to hurt yourself. LOL Enjoy XoXoXoX
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