Oh Mary, I'm with you...I just checked "My Chart" for the 5th time since this morning to see if my lab results are in yet, and each time I put in my password I have to take a deep breath and tell myself, "they're only numbers..."
I don't have personal experience with lung mets or fluid, but I have the same type of breast cancer and like you my markers dropped steadily on Letrozole. I also take turkey tail and several other supplements that I think support my immune system and overall healing. I have a primary tumor that Letrozole pretty much hollowed out of cancer, lots of bone mets that have been stable for a year and a half, and ...my personal battle...liver mets that multiplied and grew on Ibrance, but seem to be stabilizing on Xeloda. Or so I hope my labs today will show.
Take a breath and a few moments to remember how well you felt up until last week, and how well you've done on Letrozole....for a year and a half! I hope the scan and lab results are great, but I shared my story to encourage you that, if there is bad news, there are many, many more treatment options available too. I actually feel better..more energy, fewer side effects....on an oral chemo called Xeloda than I have in the past two years.
One other thought....you mentioned feeling better until last week and starting fenbendazole in the past week. Is it possible there's a connection?
I never check my chart for results. I always wait to see my onc for results because I freak out. I need to be with her otherwise my imagination runs in a negative direction!
Oh I'm the opposite - it would drive me nuts knowing the results were on my chart and I wasn't looking! I want to know so I can do some research and go in with questions. We all wrestle with this beast so differently, I'm thankful we have options. Have a good day!
Wow, I get my labs once a month when I visit my Onc and get my Faslodex shots. I get my labs 45 minutes before I see my Onc and we discuss at my appt. Cant imagine waiting for days for results. Obviously if you aren’t seeing your Onc you would have to wait until they appear in MyChart but mine seem to show up there very quickly as well.
Dear MacroMom I thank you for your input and concern toward me Correction that
I was first diaignosed in Ja 2019 with stage IV, and have been on Letrozole only 8 months now (started in Feb. 2.5 mg/day . Same time started Carnivora. )
It's now established the sudden downhill, as been my worsening heart (now officially
Sorry to hear about this chf. My mom has had it for so many years. She will be 93 in November. Medication helped her a lot through the years. What do they offer as treatment now? Did they change any heart meds?
Hello Mary. I too have mets in my right lung and mediastinal and hilar nodes. For what’s its worth, I just had my PET scan last week and I can tell you that the week before that, I was feeling bad with achy joints and my breathing also became more labored. Worse, my tumor markers increased by 10 points per month for 2 consecutive months so I was primed to receive bad news. With God’s grace however, the results came back mostly stable except for some tumors that had more avidity but no increase in size. What was new though was I had apparently developed fibrosis in my left lung which was not cancerous but is due to infection or inflammation. I did have a chest infection prior to my scan. What’s funny is that after I got good results, my “achiness” disappeared (but my breathing is still a bit labored) so maybe it’s the anxiety that is causing the bodily aches. I am on my 5th day of Fenbendazole and I have not experienced any side effects so far. Will pray that you get good results🙏. Maria
Hello Mary. Francesca has so kindly replied to your question. Yes, mediastinal is middle of chest. Before I started Ibrance and Faslodex, the mediastinal tumor was pressing on a nerve which affected my voice. My voice turned squeaky and Just above a whisper. That resolved after I started my meds and lots of prayers. I hope you get good news on your scan and blood tests. Hoping and praying very hard that the Fenbendazole works wonders!
Maria
Morning Mary,
I can understand your feelings of nervousness and fear. It is easy to start attributing every symptom to disease progression. But until you have the CT scan and blood test you will not know for sure what is going on. I hope you get good news, and if not I am sure that your oncologist will be able to go over your options with you. Please keep us posted on how things go.
I'm glad your symptoms were not related to the cancer, but it must still be scary and worrying dealing with the other issues.
I am appalled by the surgeon's attitude to your age. How dare he imply that your life is less valuable because of your age! He should stick with doing his job and do it to the best of his ability. I would have told him that if I were in your shoes.
My mum would have been 81 if she was still alive (she had me later in life when she was in her 40s). So you just made me think of her.
Just so you know, my Aunt Gert had a quadruple bypass at 85 and did great! Age is truly just a number. Then there was a 45 year old ex sister-in-law who had minor surgery for her epigolotis <sp> and she passed away even though it was called minor surgery. Had a cousin who was 50 and went in for preventative surgery, think it was angioplasty, anyway, he drank what they call smoothies now, ran miles everyday, was a health nut inotherwords, and after his procedure a clot broke loose and went to his brain and he died instantly. My hubby has had 4 heart attacks, 2 strokes, colon cancer, 2 aneurysms and diabetic to top it all off and he is still alive and doing quite well, he doesn't exercise or eat healthy and never has. The only vegetables he will eat are green peas, pork n'beans, and green beans once in a blue moon. It's all in His hands, amen! Hope you get your surgery so you can have your breath back and live to be in your hundreds, if Jesus tarries! <3 xo God bless you and heal us all in Jesus name, amen!
I hope and pray he agrees to fix your heart! As long as we have hope we have half the battle won because Jesus has the other half, amen! I may have told you, but when I'm not on a beta blocker my heartbeat gets carried away like 115 bpm just doing dishes. I was off blood pressure meds for 2 years and took magnesium which helped control the heartbeat alot. I also found that garlic does work, as I would chew it. I just got tired of eating that much garlic everyday and the effects would only last a few hours. When my heartbeat was fast I would be short of breath and felt faint. I had lost 25 lbs. and the bp meds were dropping me too low, that's why I got off of them to begin with ... then little by little as my diet and healthy lifestyle changed again, it got up there again, so I started the meds again. When I was 30 I had passed out and went to the cardiologist who put me on a treadmill and then I passed out and ended up in ICU with crazy high heartbeat and then it would drop really low like 40 ... cardiologist at the time diagnosed me with mitral valve prolapse, I'm pretty sure that's what he called it, he said the heart would beat so fast that no blood was being pumped and blamed it on a faulty valve. I still scratch my head when I think back because my valve was alright, I just needed meds to control it ... all those years since hardly EVER any heart problems again. I realize all this is probably useless information as you are a bit older than me and at a certain age we know our bodies pretty well, but I put it all out there because you never know when something you've been through can help someone else. I apologize if I've already said all this, I know I have but don't remember TO WHO lol ... God bless you and heal you in Jesus name, amen! <3 xo
You are in my prayers! The mind is so powerful; when I was just taking letrozole alone, I started doing the every other day dosing, and almost immediately all my aches and pains came back and I KNEW not enough time had passed for it to even make any difference. It was in MY MIND! Praying for good results for you in Jesus name, amen! I'm way down here on the Texas coast btw! you can call me anytime if you want to talk or pray, I will message you my phone number, use it if you want or just keep it "on file". <3 xo God bless you and heal us all in Jesus name, amen!
Someone wrote on here a sentence that I carry foremost in
My mind at anxiety ridden times. It is”i am already living with whatever is there”. I share that as I go into my onc tomorrow and find out what treatment he has in mind for me since all my treatment was stopped 2 weeks ago.
I wish you strength, peace and good results. Sending hugs n 🙏🏻🙏🏻🙏🏻
I did for a while Mary. Nothing made a difference for me really. I still take B12, vitamin d3, calcium/magnesium. I have been on lexapro for years and ambien to sleep. Now added Ativan to the mix. Since my treatment was stopped more than a month ago and I have sciatica now, I am in an emotional downward turn.
I am supposed to start xeloda soon and am scared.
I just spent the day with my baby grandson who is my heart n soul n reminds me I have to fight. He is only 2 and we are so close. I came home and cried. I have to keep on keeping on some way as do you. I live alone and really never minded it until now at almost 66 and just want to retire and can’t.
I am sorry I rambled on in my reply. I know it’s a rough time for you also. We will get through by Gods grace and mercy♥️
The results might be in my patient portal. I know the mammogram and sono were clear. They told me that on Monday after the tests. Small victory! I don't think I should look at the results without my doctor being there as I can really freak myself out. I will find out on Monday. I did notice that the past 6 months have been a bit harder emotionally than the past year or two. I think because at 5 years in I expect the other shoe to drop. Also, dreading going back to work in September. Trying to sort out a retirement plan. Feeling a bit overwhelmed. Wish I had an alter ego to take over for a while, while I go off and sulk. Will post the news next week. Thanks for asking!
I know it’s so difficult but hang in there. I’m rooting for you and praying for you also. May The Lord shower His grace and mercy on you. Pleural effusions are no fun. I’ve had 2 drainings in the last 2 weeks and will probably require one more before I start chemo next week. Just had my portacath placed. Thought I could be on Kisqali ( oral drug) for awhile but with this new triple negative cancer I have- moving on to the chemo. I try to remain positive and hopeful. God is always in control and He will be with us each step of the way. I ask for God’s healing touch on you. Many blessings!
Portacath is an implanted device which allows access to my veins for chemotherapy. It was a quick 10 minute outpatient procedure with just local anesthesia. I was tested negative for PDL so I do not qualify for the new immunotherapy drug for triple negative patients. My friend who qualified is on it and the side effects are just horrendous. I live in southern Cali. Hope they will have clinical trials down the line. For now, Chemo for me. Please keep me posted- praying for you my friend. I will let you know how my treatments goes too. ❤️
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