CSN Login
Members Online: 11

You are here

Update on my weird journey

RB773
Posts: 9
Joined: Aug 2017

Well, in September I was told chemo wasn’t working well enough, I was inoperable and they would add a 3rd drug Avastin to “try and stay ahead of the tumors.

As of November 6, I’d been admitted to the hospital once with an ER visit because they thought I might be having a heart attack (I wasnt). Around this time my hair started growing back in even though I was still on Carbo/Taxol/Avastin. I asked about it but didn’t really get an answer. At the same time I started having more abdominal pain, though not unmanageable.  Next chemo was scheduled for November 28. By this time I was experiencing daily chills and low grade fevers. Woke up that morning with temperature of 101.6, went to my Dr appointment and no fever, so she sent me over to chemo.

had my premeds, started the Avastin and 10 minutes in experiences a 101.8 fever. They stopped treatment and sent me to the ER. Admitted for 4 days, 3 nights.

A CT scan shows my chemo had completely stopped working. My tumors were now larger than when I was first diagnosed. They told me I was terminal and to go home and enjoy the holidays as they would probably be my last.

i think most of you can  imagine the devastation I was experiencing. I spent that weekend having conversations with family and friends. I felt terrible as everyone cried.

The next Monday my Dr called to tell me she was having my original biopsy tested to see if I’m a match for Keytruda. I am. My Dr was hopeful yet made it clear this probably wouldn’t cure me but may buy me more time. I’ll take it!

December 15, I head to my Dr appointment, and hopefully my first Keytruda infusion. Walk into the lobby and trip over a wheelchair someone left there. I saw the wheelchair but not that the legs were not folded back an went flying, injuring my knee. When I got up to my Dr office I told them what happened. They now refused to see me or let me have treatment as I was injured on hospital grounds and must go to the ER. Really, who does this happen to? I must have a black cloud over me!

after x-rays and a tetnus shot, a little bacitracin and a large bandaid, they sent me home. 

Meanwhile Im stilling getting fevers and chills and more pain daily.

Finally got rescheduled for the Keytruda for this Thursday. I have no idea if it will help me or if I’ll experience side effects but I’ve heard good things and am praying for good results.

just had to vent as my journey has been long and hard even though it’s only been 5 1/2 months of chemo treatment.

this is a tough place to be, encouraging words would sure be welcome right now!

By the way it appears I may have Lynch Syndrome as well. Meeting with a Genetic Counselor in February.

sorry for the typos, I’m on my phone!

SandyD's picture
SandyD
Posts: 130
Joined: Oct 2015

Boy! You've really been through a heck of a lot! I'd be totally out of my mind at this point, but it sounds like you're a really strong and determined woman despite all the setbacks! I've read a lot about Keytruda and other new immunotherapy drugs and treatments. There are a number of reports in which the've been nothing short of miraculous for patients with advanced cancers. I would also add that getting a 2nd and even 3rd opinion might also be something to consider so that you're aware of the full range of treatment options. Stay strong, advocate for yourself, and reach out for and accept the love, strength, and support of others! Sending love and healing energy your way!

 

 

 

 

 

 

Jairoldi's picture
Jairoldi
Posts: 219
Joined: May 2017

Sure sounds like a lot of stress in a short amount of time. Here's to the Keytruda working well and quickly!

CheeseQueen57's picture
CheeseQueen57
Posts: 835
Joined: Feb 2016

Never give up hope. If the Keytruda doesn’t work out, go for a second opinion. I don’t think any doctor should take away a person’s hope. 

evolo58
Posts: 293
Joined: Dec 2017

I've been here such a short time, but already, I rejoice when I hear of an NED story and am truly sad when one of our sisters suffers a setback.  What must be so frustrating is that this delay was due to someone else's blunder. Thursday is so close, but so far. Hope your fever dies down as well.

I hope and pray the Keytruda works and we will hear of your dances with Mr. NED soon for a long time to come. 

saltycandy13
Posts: 167
Joined: Dec 2017

I am so sorry.  I pray for you as well with your new treatment.  God's Speed!  We are all with you.

 

Karen

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1577
Joined: Jun 2015

RB773. So sorry to hear about all of the challenges. Cancer is hard enough without having other things on top of it! I hope all goes well for you on Thursday. Please come back and let us know how you are doing. We have a couple of ladies on Keytruda that may come in to offer you some advice.

Love and Hugs,

Cindi

RB773
Posts: 9
Joined: Aug 2017

Thank you all for your support, it means so much.

I will let you know how I make out.

hopeful56's picture
hopeful56
Posts: 73
Joined: Jul 2017

So sorry to read about what you are going through.  You are in my thoughts and prayers and hope that everything goes well with you and Keytruda helps you.

Hugs and prayers,

Sandra

SF73
Posts: 278
Joined: Oct 2017

That is quite a journey. I am so sorry that you have gone through such scary days/weeks and so glad that you are a good match for Keytruda. Wishing you strength and many healthy years!

EZLiving66's picture
EZLiving66
Posts: 1369
Joined: Oct 2015

I am so sorry you're going through all this.  It seems if it wasn't for bad luck you'd have no luck at all.  Lou Ann on this site has been on Keytruda for awhile and it has worked for her.  Hopefully it will work for you the same way.  I agree with the other ladies in saying a second or even third opinion might be in order. You might also look into clinical trials.  

Love,

Eldri

Subscribe to Comments for "Update on my weird journey"