Rapid Weight Loss
 

Hello Ladies,

I am hoping someone can chime in with some advice or experience to share. Last May, I was told that Erubulin was no longer working for me and they took me off the treatment. The Drs said that I have pretty much "blown through every good treatment option available that targets Her2 and conventional treatment" and that I am running out of options. They ended up referring me to Princess Margarett Hospital to see if there were any clinical trials available to me. Currently, I am trying to get on their Phase 1b Trastazumab + Dervalumab immunotherapy trial. I did all my screening and scans yesterday and am awaiting a call from them. Although I am hopeful to get on some systemic treatment, I have also been off treatments for 2 whole months. Drs were unsure whether to give me any treatment in the interim or not because the trial requires a one-month wash out period to qualify (so they saw it as pointless). Since I have been off treatments, I noticed my weight has been rapidly declining, I also had a large pleural effusion in my lung which resulted in a nearly collapsed lung. I ended up getting a pleural catheter put in, and since then, I have been so depressed and miserable. My weight continues to drop rapidly despite me eating regularly, I have little energy, and I no longer feel I am able to do what I use to be able to do. I feel worried and scared, but worse, I have little appetite when I do eat. When I look online, it appears I may have Cachexia. Has anyone experienced this? How can this be reversed? My clothes are falling off my body and I look sickly, it really depresses me. Any words of wisdom or advice will be appreciated!

Re: Rapid Weight Loss
 

I am so sorry this is happening. I don't have any experience myself with it, but if you check out Ann Silberman's (Cool Breeze here on this forum) blog and Facebook page, Breast Cancer? But Doctor, I Hate Pink!, she has some posts and links about the Cachexia she herself is experiencing as a Stage 4 mets person.

Carol Ann

Re: Rapid Weight Loss
 

Megace (Megestrol) a Progestin can stimulate your appetite. I think the strength is 40mg/ml and the dosage might be one teaspoonful 3 times a day. Talk with the Oncologist

Paul

Re: Rapid Weight Loss
 

I'm sorry I don't have any advice for you but hope you get started on the trial soon and have a good response to it.

Re: Rapid Weight Loss
 

I too have no advice but really praying hard for you! Hope you get some answers and treatment options fast.

Re: Rapid Weight Loss
 

Hi WayTooYoung,

I recall your earlier posts and am sorry you are experiencing such a strenuous journey. It must be so overwhelming. I can only offer advise regarding appetite as I was on the thin side going into chemo and not very food oriented other than taste and maintaining my health. I'm going to go out on a limb vs. texting you personally because in my last stages of chemo I did use medical marijuana and it was an enormous help. So much so that I can't thank the state I live in enough. I know my response does not address your overall situation, but it did help me acquire an appetite. Best to you and your success with your treatments.

-Julie

Re: Rapid Weight Loss
 

Hello everyone and thank you for all your great and wonderful feedback and prayers. Unfortunately, my restaging scans of the MRI of my spine show there is some disease in the cerbellum (brain stem). They told me I couldnt be a candidate at this time for their immunotherapy clinical trial. I was floored by their news as I was penciled in to begin treatment today. Drs also said I would have to do radiation to my spine/brain mets before I can begin other forms of systemic treatment which currently remains very limited for me as I have used up pretty much all that they offer. Right now, I am numb and being ushered through many appointments. I just had an MRI for my brain. Not sure what to expect next...I am only 34, is this really it for me??? I'm in need of support.

Re: Rapid Weight Loss
 

This is not it for you, you are a strong, tough woman! Is there any way to get a second opinion? I see you are in Canada, any possibility of finding a way to the US for options?

Praying for you - stay strong and positive! Jessica

Re: Rapid Weight Loss
 

WayTooYoung,
I am frustrated for you, that you cannot participate in the trial at this time. But you will get there. You can do this. You have faced so many challenges already and have pushed though them. Some very wise people in this group remind us to focus on the first step, then the next. I am thinking of you and praying for you.*
Cindy