Results are in

[kduck]

My pet scan shows some lymph active. I don't know how to feel, but I knw I have to fight for my 2 children. All bones are fine, please someone help me thru this. I feel like screaming my head off. What's next? What can I do next?

[Toomanyquestions]

Do you have lorazepam? It has been a god send. Also I think that those of us with young children should be actively looking at alternative medications/treatments that may give a chance of cure or remission. There are a lot of potential cures out there and a lot of people on Youtube and authors of books who have reversed stage 4. So you do have hope. I’ve just started working with a cancer coach. X

[kduck in reply to Toomanyquestions]

Thank you.

[kduck in reply to Toomanyquestions]

In sorry, but what is lorazenpam. I've never heard of it before. If he change, he talked about kisquail.

[Toomanyquestions in reply to kduck]

It’s an anti anxiety drug. Helps me keep calm so I can continue my research in to alternative options x

[blms in reply to kduck]

Please try l theanine first!! Get 200 mgs. and take it twice daily. It is natural and I have found it very effective for stress and anxiety. Take first thing in Am and before bed on empty stomach

[Hidden]

Hi,

I'm sorry you received some bad news. What did your oncologist suggest as the next plan of action? Do you have to change treatment? Please keep us updated on what is going on. I agree with Ellie. There are lots of potential (and actual) cures available for metastatic cancers. Many people have found a way to cure their disease, or at least live with stable disease for many years. Kris Carr is one such example. She has been living with metastatic cancer since her early 30s and she is now 47. Hopefully whatever you try next will help stabilise your condition and get you back on track again.

Take care,

Sophie

[Toomanyquestions in reply to Hidden]

The more books I read the more I believe you Sophie. I didn’t at first but now I’m very positive Xxx

[Hidden in reply to Toomanyquestions]

Morning Ellie,

I'm so pleased to hear that! I know you have been having a hard time lately, so I'm glad you have turned a corner. I'm not saying I'm cheerful 24/7, but having hope and a positive attitude really helps. I think one of the reasons why some oncologists are not on board is because what we are looking into is beyond their realm of expertise. But that doesn't mean to say alternative therapies don't work. I just think they tend to work better when used in synergy with conventional medicine.

Sophie ❤

P.S. It's meant to be cooler today, thankfully! I've been suffering all week! How have you been coping?

[PLASEM]

I am sorry about your PET results but now there are so many medications to control it and you can be NED means not evidence of disease so think positive at first it is a shock then you have to read and educate yourself to be proactive on your treatment God bless you

[mariootsi]

So sorry you received news of a change in your condition.

Try to breathe and as someone said take a lorazepam or xanax so you can settle down and think about what you want to ask your onc. There certainly are many options and I'm sure your onc will have a plan.

Love and hugs, Marianne

Keep us updated please. We are here for you. And remember all of us will be going through treatment options and changes with this damn cancer. Breathe! I know I forget to do that!

[Hidden]

Scream if you want to. You need to let it out. If your anxiety is really bad that your doctor can prescribe Ativan. I have used it and it has helped me sleep as it shits my over active brain down a bit. It helps with scan anxiety too. It is so difficult when you first get bad news but this group is a great supper. It really does help to talk about either with a friend or family member or in here or with a health care worker. Your doctor will have a course of treatment to try and there are a lot of different treatments out there now.

[lashinator]

Definitely scream- and take drugs. Unfortunately it's a roller coaster. Sorry to hear you are on the "down" part. You will find a new drug combo and be on the up swing soon. Please reach out, and find someone to talk to. Of course you will fight for your kids.

[Thrifty51]

So sorry to hear about the results. I have been on Kisqali for seven cycles and it has really been effective for me. My doc started me out on it because it has less chance of causing blood clots than ibrance. If you switch I hope it works as well for you.

I also recommend the lorazapam. It has kept me going the last few years.

Many warm thoughts and prayers to you!

[kduck in reply to Thrifty51]

Does it lower your wbc? What are some of your side effects while taking kisqali?

[Thrifty51 in reply to kduck]

Yes it does. I had to reduce from 600 mg to 400 mg after two cycles because of the low wbc and fatigue. It has the same side effects as ibrance like thinning hair, mouth sores, etc. My bone mets have reduced and markers have consistently decreased with each cycle even with the reduced dosage.

The dose to start is 3 pills @ 200 mg each then I reduced to 2 pills. I also take 2.5 mg of letrozole each day as well as an xgeva shot each month.

[blms]

So other than lymph nodes, where has your MBC spread? What are your receptors?

[kduck in reply to blms]

I am er+hr+her2- bone only. My bones are healing, this is something new. I hv radiation to 7 bones. I hv been NED for lil over a yr.

[blms]

So are you saying you are NED because they can no longer find cancer in your bones?

[kduck in reply to blms]

Yes, my bones mets where under control.

[blms]

what do you mean by under control? Do you mean they are not there anylonger or just that they haven't spread to other bones?

[kduck in reply to blms]

Haven't spread to other bones. To small to be detected on PET scan.

[Mindysooty]

So sorry to hear this. Such a scary time especially if you've been NED for a year. Ive got mets in my neck lymph nodes and when I started Ibrance they immediately swelled up to twice the size so try not to worry, just bacause there's 'activity' in your lymph nodes doesnt necessarily mean its cancerous. But even if it were to turn out that way, as you already know, there's an abundence of treatments out there both conventional and alternative to help you for many years to come. Have your scream, cry, do whatever you need to then take a deep breath and try to keep calm. You've got this and we're all behind you with whatever support you need. Please do keep us updated. Crossing my fingers and toes for you. Very best wishes. Josie x

[kduck in reply to Mindysooty]

Thank you so much for your encouraging words, it means so much to me. I will have to quit my job, it I think it was keeping feeling almost normal. My family and my health is more important.

[Mindysooty in reply to kduck]

Family and your health are important but dont do anything hasty whilst you're so emotional. If working helps you to feel more normal and you enjoy it, could you explore any reasonable adjustments with them to make it more do-able for you. Could your work pattern be adapted for example or could you maybe reduce your hours? Obviously it depends what you do but it may be worth taking a little time to think things over. X

[rubyc1234]

I too believe they will find something for you and that they will get things under control. Ativan sure helped me in the beginning when I first found out my cancer had returned. Talking with the SHARE volunteers and to the ladies on this site brought me out of my dark state. I realized that this is not something I wanted, but that I can live with. There is plenty of hope.

[kduck in reply to rubyc1234]

Thank you