Dragon is back....need support
 

Hi All,
I am back to this board after some time and with not very good news.
After 10 years being NED I have been diagnosed with a severe metastasis to Bones, Spine, Lung, Liver and brain.
Very scared, the have said they will do a spinal surgery tomorrow as the L1 Vertebrate has collapsed and the other vertebrates have also got impacted with metastasis.
The onc plans to get this surgery done and then biopsy the tissue to study the sample.
If the sample is Her2 then he would try with Hercpetin. For Brain they would do radiation.
Has anyone of you gone thru this.
Please help, I need support.

Re: Dragon is back....need support
 

I'm so sorry to hear this news. I don't have any experience with mets so I cant offer any insight to you. Progress has been made in treatments in our disease in the past 10 years so I'm hopeful that they will find a treatment for you.

I will keep you in my thoughts and prayers and send positive energy your way.

Take Care

Re: Dragon is back....need support
 

Michele U are you still active on this forum

Re: Dragon is back....need support
 

Hi Rupali. I am sorry to see you back on this board. I can imagine how you feel but keep faith. What treatments did you have ten years ago? Once you will have the results of the biopsy you will be able to fight the "Dragon" with new weapons. One step at a time. First consolidate your spine and prepare for surgery. Then focus on recovery while your medical team is working on the biopsy. They will suggest a treatment and you can share it with us if you want.
I had metastasis all over (lungs, liver, sternum, nodes) 4,5 years after first treatment and I am still here, Ned, almost 4 years later. Stay strong. Michka

Re: Dragon is back....need support
 

Rupali I'm so sorry to read this and hope Michka's own experience will give you hope, I was dx a year after you and can imagine your shock at this sudden news. Please stay strong and meds have advanced in those years and I'm wishing a great response for you, please keep us posted. xx

Re: Dragon is back....need support
 

I am so, so sorry to hear that. I cannot imagine how betrayed you must feel right now---shocking. Dig in and prepared to be NED again. You've come so far and medical advances are happening every single day. You're in my prayers.

Re: Dragon is back....need support
 

I, too, am so sorry to hear this news. Please keep us informed as we are all part of your extended family.

Re: Dragon is back....need support
 

Sending prayers your way. I have had bone mets to spine, pelvic and ribs. All are currently clear except one. Its amazing to me what they can do with the new meds that are out there. You've been thru this once and you stayed strong - don't give up a minute before the miracle. Hope you do well. Keep us posted.

Re: Dragon is back....need support
 

Dear Rupali,
I am sorry you have had to rejoin us under these circumstances, but hold on to hope. There are many of us living with mets, treatments have improved and much support is available. First thing is getting through the surgery; I hope it all goes well. Then you and your doctors can work out a plan for further treatment. Keep in touch.
Best wishes..... Pam

Re: Dragon is back....need support
 

Prayer going up, Rupali. Please keep us in the loop. Hope you feel better soon.

- Penny

Re: Dragon is back....need support
 

Hi Rupali
Firstly so sorry to hear you're facing this battle again.
I have looked back over your previous post and noticed you were originally her2+ and ER + and that you had over a year of herceptin then some lapatinib plus hormonal treatment.
I wondered how regularly your onc was doing scans and did you have symptoms that made you believe the cancer was back?
As others have said targeted treatments have moved on quite a bit with perjeta and kadcyla. It feels important that they thoroughly check now to see if the original tumour has changed status and that they find out if it is still being driven by both her2 and oestrogen as this will have a big impact on treatment.
Please let us know how it goes.
Ellie

Re: Dragon is back....need support
 

I am very sorry to learn of your diagnosis. I am sure that this is very difficult for you. As others have stated, there is still reason to have hope that they can control your disease progression.

It sounds like it was fairly extensive in how far the disease had spread. Did you have any symptoms, in hind sight, that might have aided in having the diagnosis sooner. The damage to your discs sounds awful.

Sending prayers your way.

Ann

Re: Dragon is back....need support
 

I also am greatly sadden by your news sending great hope and prayers for you and your family. I am astounded by the fighters here who have been fighting and are still fighting mets for a great many years. So much HOPE! His Peace

Re: Dragon is back....need support
 

Dear Rupali,

What a shock for you. I'm so sorry you're going through this. No one wants to get news like that.

Here's what I know about metastases: Bone mets can cause pain and can be crippling, but by themselves they aren't deadly. People can live a long time with bone mets. Brain mets are common in people with HER-2+ breast cancer. They are also especially vulnerable to the various treatment methods. As others have said, there are many new techniques and treatments these days. There is hope. I have a friend who had brain mets over 3 years ago, and she's doing fine. Likewise, liver and lung mets can be controlled or even eradicated. I had liver mets. They have healed. I have one little bone met. It's stable. I have mets in my lungs, but I'm confident we'll get them resolved soon. You have every right to expect success. If you're ER positive then your treatment prospects are even better.

This is devastating news, but please try not to worry about anything until you have to. You know you have these issues. Your doctors are on it. Just keep breathing.

Do what you need to do to take your mind off it. Get a bunch of funny movies and watch them. Sit in beautiful places and take in the beauty. Calm your mind. If you know how to meditate, do that. If you don't know, see if they offer a meditation group where you are treated.

Let us know how you're doing. Ask for help when you need it. You're among friends.

One thing at a time. One foot in front of the other. Stay in the Now.

Re: Dragon is back....need support
 

I did Novalis radiation at UCLA for brain met in 2011 and again in 2012 and my brain scans have been clear for over a year and a half. I have had mets to my bones and lungs and liver. My bones are stable, my liver seems good, I have lung issues, which I still am undecided about how I will treat them. Treatments have improved a lot since 10 years ago. Good luck and stay as positive as possible.

Re: Dragon is back....need support
 

So sorry to hear this...be strong, there will be a plan for you.

Re: Dragon is back....need support
 

So I am back here looking for advice from all of you.
So the biopsy results came back as ER+, PR- and Her2 equivocal. They have sent for FISH test for Her2.
They have started radiation for brain today and are doing whole brain radiation.
Will start tamoxifen tomorrow and decide on chemo or Hercpetin after 4-5 days based on FISH results.

Is this plan ok? What are do's and donts and tips for radiation to keep me going.
Do they give tamoxifen even when I may get back my periods. Last time I remember I had tamoxifen while I was on chemical menopause due to AC+T chemo.

I am worried that if Her2 score comes negative in FISH then what chemo will they put me on as I have already had AC + T 9 years back
Let me know your views

Re: Dragon is back....need support
 

I don't know about radiation first-hand. Hopefully someone else will chime in. I do know several people who had it a long time ago and are fine. They don't have much hair, but they're well.

I think this is exactly what I would do if I were you.

There are other chemo drugs for HER-2 negative cancer. You have lots of options.

Don't worry about anything until you have to. New treatments are being developed all the time.