NEED A little luck, here...feeling a bit shaky

[Arkait]

CT scan upcoming tomorrow. results of that and blood tests by 27 Aug.

I was doing well, until about a week ago my shortness of breath got worse,

and the amount of fluid in my lung has started to go up. I have no idea why,

and am afraid my blood tests and new CT scan will be bad news . Writing

because of discouragment---because up until last week I was actually feeling

better and better.

(I am on Letrozole, plus supplements Carnivora,

Graviola, turkey tail mushroom capsules, and, this past week, started fenbendazole. I have her 2 neg, er positive MBC stage IV to right lung

with pleural effusion (my most handicapping symptom), plus tumors in my breast area lymph nodes and 2

bone mets on back of my neck and possibly on my sternum.

Hope you guys will wish me luck. God help us all.

Mary in Maine

[MacroMom]

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?

Wishing you peace and good news!

[mariootsi in reply to MacroMom]

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!

[MacroMom in reply to mariootsi]

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!

[mariootsi in reply to MacroMom]

Enjoy your day also!

[nstonerocks in reply to mariootsi]

Me too

[Lcranaudo in reply to mariootsi]

That’s exactly how I feel.....wish I could be more positive sometimes even though my Onc says I’m fine...

[mariootsi in reply to Lcranaudo]

I know!

[Gingerann1 in reply to mariootsi]

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.

[Arkait in reply to MacroMom]

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

in congestive heart failure mode)

[Arkait in reply to Arkait]

correction , been in treatment only 6 months,

[Francesca10 in reply to Arkait]

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?

How are you feeling?🙏🏻🙏🏻🙏🏻♥️♥️♥️Frances

[mudakurag]

Wishinh you TONS OF LUCK!

Will keep you in my positive thoughts and prayers❤️

[MyMiracle13]

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

[Arkait in reply to MyMiracle13]

Hi Maria, nice to hear from you thanks. I am on 3rd dose of fenbendazole, with no

bad side effects. However, I did experience a lot of gas and slight diarhearra from the

first two doses, which posed no problem, as neither was severe.

I have a question, please, what /where are "mediastinal and hilar nodes"? I have

these, also but don't know locations. Are they middle of chest and throat areas,

respectively? tia GO FENBENDAZOLE, right? !

best wishes, Mary in Maine

[Francesca10 in reply to Arkait]

Middle of the chest is mediastinum and hilar are nodes- I am getting rusty.!some RN I am😳❤️

[MyMiracle13 in reply to Arkait]

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

[Hidden]

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.

Take care,

Sophie

[Arkait in reply to Hidden]

Thanksk Sophie, as hou can see from above, the worsening was NOT the cancer,

it was that I was feeling so much better, I over taxed and brought a reaction from

my heart, rather. Hence the confusion of feeling better and then suddenlh

going downhill (accumulating fluid and getting more and more short of breath.

Wish me luck getting to do under the knife at 81 years of age. Surgeons don't like

to save old gals, with cancer...theh offer hospice here in Bangor I was insulted.

They were saying things like "if you were 55 years old, etc....

[Hidden in reply to Arkait]

Hi Mary,

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.

I wish you all the best,

Sophie 💓

[Godbeforme in reply to Arkait]

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!

[Arkait in reply to Godbeforme]

Oh my , thank you for such encouragement. It's in Jesus's and God's hands

how I will fare. But I am very lucky if Dr Craig Smith agrees to operate, as he

is one of the best in the USA. Here in Maine, they won't touch me. Talk to me

about the benefits of

hospice care, instead. (I guess one can limp along with congestive heart failure for

quite some time---but I'm thinking it might not be such a nice time,

because it leaves one wide open for getting a stroke from being sedentary..

And it certainly doesn't fit in with the need for exercise, when fighting cancer.

As it is now, I can barely walk a half block at a slow pace without stopping to

catch my breath ! If I hurry, I can have what I call an "episode" which is

about a full minute or minute and a half immobilized and gasping for air and fearful of fainting and not even having the breath to speak.

[Godbeforme in reply to Arkait]

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

[BeckyinMaine]

Hi Mary,

Scans are always scary so I’m sending thoughts for strength, relaxation and reassuring results.

I noticed that you are in Maine. I am too. Would you like to connect on email or by phone?

Becky

[Arkait in reply to BeckyinMaine]

Yes I am at 207 990 5839 mornings and evenings. or cell phone

207 974 7573... send my cell a text anytime and will share email.

thanks. (warning, I'm an old gal with an empty nest....81 years old,

but behaving like a silly girl of 62, most of the time, unwilling to

face limits.)

[Francesca10 in reply to Arkait]

Keep on going Mary♥️♥️♥️Bless you🙏🏻

[mariootsi]

I will be thinking of you tomorrow and praying for good scan results!

It's all so stressful!

[Arkait in reply to mariootsi]

Thank you I got good scan results. But my heart valve is the culprit

bringing me down (short of breath, bad, fluid build up in both lungs)

[mariootsi in reply to Arkait]

I will be praying for you and you and healing for your heart issues.

Remember you are a strong amazing woman.

[Godbeforme]

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!

[Arkait in reply to Godbeforme]

I am a strong witness for Jesus, also. Please email me at [e-mail]

and we will talk some day soon. warm regards, Mary in Maine

( have cousin lives outside Houston. and my mates family in is in San Antone)

[mariootsi in reply to Arkait]

Mary, I am in Connecticut. You can email me anytime if you need to connect!

[mariootsi]

I also find that I feel worse before a scan! I really think it is the effect of anxiety on our bodies.

[Francesca10]

Mary

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 🙏🏻🙏🏻🙏🏻

♥️♥️😘

[Red71 in reply to Francesca10]

Also sending you positive thoughts for your visit to tomorrow. I know that they will find a path for you. Elaine

[nstonerocks in reply to Francesca10]

How did your doctor visit go?

[Arkait in reply to Francesca10]

Thanks godbless for your encouragement

[Arkait in reply to Francesca10]

Dear Francesca, are you trying to add on alternative herbs, supplements?

If only to provide hope that one might give you additional help, I find it mentally

soothing that , in combination, supplements can help our immune system get

stronger (and the cancer weaker). Just a suggestion. I am taking six, the last

being tried is fenbendazole (which reportedly take 8 to 16 weeks for effect, and I

am only a couple weeks in, so I can be optimistic for another 6 weeks.....on that

count, lol).

[Francesca10 in reply to Arkait]

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♥️

[Francesca10]

♥️♥️Sandra xxx

[nstonerocks]

Hi Sandra,

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!

[Francesca10 in reply to nstonerocks]

I feel the same way Nancy♥️

[Arkait]

Thanjks Sandra see above I got a decent scan result. Hooray!

[PraiseJC]

Hi Mary,

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!

Love,

Hannah

[Arkait in reply to PraiseJC]

Dear Hannah what is a portacath? I heard triple negative has been attacked by

immunology approach, specifically related to Israeli research..... Have you

checked immunology advances? It is cutting edge, currently, I believe in Arizona they have trials, or Calif.

Where are you?

[PraiseJC]

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. ❤️