Is anyone else bones, lungs and liver?

[Toomanyquestions]

How are you feeling?

[mjmom]

Yes, I’m not in any pain. Currently taking Ibrance/Letrozole.

[Toomanyquestions in reply to mjmom]

How long have you been taking the medication. Is it working?

[mjmom in reply to Toomanyquestions]

About 6 months. After 3 months all spots shrunk over 1/2 the size accept the lung nodule.. that stayed the same.

[Toomanyquestions in reply to mjmom]

How old are you? I’m 42 with 2 young children. Do you manage a normal life? I’m due a scan next week x

[Toomanyquestions in reply to Toomanyquestions]

Scary question but have they given you a prognosis? Are you ER+. I’m freaking out a bit today!

[Barbteeth in reply to Toomanyquestions]

Hi there

I think the nearer the scan date..the more worried we become

Try not to fret because it changes nothing....I need talk I’m a dreadful worrier as well...it’s hideous and we have to live this scenario again and again

I don’t think many oncologists give a prognosis because they simply don’t know!!!

Many new medications are around the corner ...I’m not just saying that...I truly believe it...I hope you perk up soon and your scan results are positive

Love barb

Xx

[Toomanyquestions in reply to Barbteeth]

Thanks Barb, I fret from morning to sleeping pill. Xxx

[Barbteeth in reply to Toomanyquestions]

Just tell yourself it will get better...you’re still in shock from the diagnosis..I told you in another post it’s taken almost a year for me to feel anything like normal...well not the normal I used to be...I will mourn that girl for ever...trying to live in the now as other ladies have told me to do on here

Barb xx

[mjmom in reply to Toomanyquestions]

I didn’t ask.. I am ER+ Her2 -. I was very optimistic when I received my DX.

[Toomanyquestions in reply to mjmom]

Optimistic for a cure? I was dx in A&E after breaking my neck. Still doesn’t seem real x

[mjmom in reply to Toomanyquestions]

I understand there’s no cure. But there are many women that are living many years after MBC DX even after it has spread to many parts of body. I thought why not me. It gets better with time. I was a wreck at the beginning and the stress brought physical pain. Once I accepted my DX, I’m in no pain. The healing process has a lot to do with your mental state. Try to stay positive. 😘

[mjmom in reply to Toomanyquestions]

I was dx at 42, I have a 12 year old. Yes, I still work full time & live a pretty normal life.

[mariootsi in reply to Toomanyquestions]

So scanxiety is so stressful! I wish you well on your scan! We all can relate to the fear.

I'm still trying to get a grip and trying to learn to cope!

It takes time! Hugs and peace to you!

Love, Marianne

[Toomanyquestions]

Hi Sandra, thank you for your reply. Yes I am scared (all the time to be truthful). I saw a cancer councillor at the hospital which wasn’t great as I was the youngest by far in the waiting room. I had to recall everything that has happened to me in the past 6 months and she diagnosed PTSD. I was supposed to call the GP today to get some different medication but I had a meltdown day and couldn’t function. I will do it tomorrow. I’ve been doing a strict diet since dx and this past week I’ve started eating cake, butter bread jam etc etc all things I’ve not eaten for months. I think I have gained some weight and it is actually very pleasing to eat something that’s not just avocado and scrambled egg! Not much progress with me accepting this dx and still struggling to engage fully with kids etc. Not sure if the councillor helped really but I have to see her for 5 more sessions before I get referred to a PTSD person. I spent all day yesterday researching clinical trials and emailing hospitals all over the place just desperate to find a cure or a way out of all these drugs but it was in vain. There are some promising articles out there but no hard evidence. Thank you for always replying to me. I always feel bad for being so negative on here Xx

[Godbeforme in reply to Toomanyquestions]

Just yesterday, I read that Israeli scientists had made the first beating human heart in the 3D printer, made from a patient's own cells/tissue! Six months or so ago, it was announced by Israeli oncologists/scientists that they will have a cure for all cancer out there by 2020 called MU-TA-TO! I have great hope in Israel because so many good things and new treatments come from there; the apple of God's eye, Israel, where the desert blooms again! Sharing hope with you and all we have to do is stay alive just a little while longer and BOOM, a cure! This is real hope, because it is a real thing happening and they also said that treatment would only be for a few weeks and that it would be easy on the body with no toxic side effects. Hope is REAL and faith is the substance of things that are NOT, the evidence of things NOT YET seen! Shalom <3 xo

[Toomanyquestions in reply to Godbeforme]

What do you think about this? eurekalert.org/pub_releases...

[Godbeforme in reply to Toomanyquestions]

I think it's great! Eureka is right! <3

[mariootsi in reply to Toomanyquestions]

You aren't negative! You are just scared as we all are!

[Timtam56]

Hello gorgeous women.

I too have spots in lungs and liver and my onc does not want to do tests. Also having bowel probs, but she doesn’t want me going to a bowel specialist as she doesn’t want any unnecessary probing and prodding (as I guess that would interfere with where I’m at at present), which I found out last Friday, is “stable”, after about 10 months of treatment.

This whole trip is very scary for all of us. I get you all saying “you have to stay positive”. But I also get toomanyquestions, that this is a place for us to vent. Talk about our fears. Not stay so strong we can’t say we scared or worried. So. I will say here that I have my good and bad days also. I have walked alongside my partner (Mantle cell lymphoma at age 66) who is supposed to be in his last few days alive right now, being told he has two months to live, three weeks to live, six months to live, by his onc constantly over the last year. I was told last August to get all the family to come in straight away. He has been proving to be a “miracle” over and over. And they keep finding new trials tat keep him going for a few weeks, then he gets sick again.

I have told him, I would have given up by now, each time he embarks on a new trial. And yet he keeps rising above all expectations. He’s my hero. I have learnt so much from his attitude.

So to you toomanyquestions, I don’t say stay strong, stay positive, I say feel the fear. But also, never give up.

You are all so wonderful replying and supporting each other. This is the best thing I’ve found since my diagnosis. I know I will turn here to you all when my man dies, and when I feel fear.

I hope I’m not sounding morbid.

But I will try to reply to any one of you with words of support, as I hope you will me.

All I know is, my sister was given 18 months to live with this same disease 10 years ago. She died 18 months later. She gave up from the moment she was diagnosed and was not as positive about life as I am. There were also not the medications we have now, and in two months, two years, ten years time, people will not die of our disease.

We are all amazing soldiers fighting on the front line as we come up to our scan time. Some of us dealing with oncologists who have a good bedside manner. Some who don’t. But hopefully we get support from our family and friends, and that is what carries me.

Thank you for reading my rant.

Timtam.

[mariootsi in reply to Timtam56]

Your partner is a hero! Very inspiring!

[mariootsi in reply to Timtam56]

I don't think any onc knows how long we have! I have never asked and never will!

[Libra48]

Greetings Toomanyquestions... I’m a newbie just like you. Diagnosed December 2018 with BC/mets to bones. I’m on my second cycle of Ibrance/Letrozole. Just like you I am still struggling to accept my diagnosis. Lately I’ve been feeling tired and weak. A few other things as well but I’ve been able to function.

I am 48 years old with 2 kids and it breaks my heart to look at them sometimes without breaking down. I feel scared everyday...all day. There are days when I wake up and feel good and tell myself I am strong and will fight this but there are days where I just want to hide under the blanket and cry all day. I have a supportive spouse and feel so angry and frustrated that our lives have changed so drastically. We need to try to take it one day at a time. I know it’s difficult but we are still here and our kids need us. Enjoy your babies..hug them, kiss them, play with them...they will keep you strong! x

[JonaC38]

Hi, I am 38yrs old with a 11months old baby. Diagnosed during pregnancy ER+ and Her2-, DNA testing came out all clean with any mutation. Done right breast mastectomy during 34wks pregnancy, radiation to my T4 spine after giving birth. Started letrozole and Ibrance last July 2018. Ovaries removed last Sept 2018. Mets in liver, lungs, lympnodes and spine shrunk 60% after 3months of medication. The pain in my spine was gone after 5months of meds. Follow up scans showed continued shrinking of mets. Working fulltime despite of side effects. I am staying positive for my son even though I was told I have only 5yrs to live if im lucky. I remind myself all the time that I need to be thankful and smile when deep inside I am so numb. Only God knows my time❤️ Xoxo

[mariootsi]

I agree.

[mariootsi]

We are already living with what is on the scan! What a great way to look at it.

[Godbeforme]

i have in bones, innumerous nodules in lungs, and several lymph nodes affected as well; said liver looks "fatty"; however, doc said no evidence in blood and all my initial blood work was normal. God bless you! <3