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From Butt.....................

Butt's picture
Butt
Posts: 351
Joined: May 2018

Typing from my mobile....I got diagnosed in Fall 2017. They put me in chemo and a few other things were done. In May 2018 I had a liver resection I started to push myself with walking because I really wanted to go back home for 3 weeks in July to see my family and friends. One doc suggested a mop up chemo and instead of my trip I got stuck with treatments and side effects. In August 2018 I got a clean scan and it gave me a lot of hope.                 In November 2018 multiple lung mets were discovered and back on chemo in January. I wasn t operatable. I contacted to docs in Germany and Russia and they were not taking me fir a surgery. In November 2018 I started a progression. I went for the 4th visit to MD Anderson. I wanted a T cell trail but when I saw a doc who supervise it it turned out that they scanned 2300 people approximately and only 26 were eligible. It is 1 percent. I wasn t a candidate. They offered another trail. I had plans for the family to visit around x mas And the tickets were purchased. Everything got canceled because I had to go back to Houston And it couldn t wait because as I was told they were running out of seats in the trail. I went there.              Between the 2 and 3 infusion I was there. They initially had to do a lung biopsy as a part of the trail but decided to cancel it because they determined it was a high risk And it was not communicated to me. Another doc there wanted it and things went South.  I started having breathing problems next day while shopping. I called them and asked for x ray. They wanted to do it the next morning but I insisted. Boom. They rushed me into surgery. I had 2-3 hours left to leave. The air was surroubding my heart and due to pressure it was supposed to stop. Because I was not fasting they had to insert a tube in my chest without proper anesthesia. It was a level of tremendous pain I felt that my kidney and liver would burst. The last thing I remember was I said that I can t breave oxygen. I passed out from a pain shock. After they were done i could t move my right upper side. Tremendous pain. I could walk or sit and they were feeding me narcotics. They damaged a nerve and failed on a pain manager. I heard stories that there are no nerves in your chest and I have pain because I have cancer. They removed a tube and the matter got resolved. Just before my release when I was walking around a nursing station I felt. They had a spilled water on a floor with no signs. it was unclear if I broke my hip. it turned out not being the case.              When I got back to FL I started immediate treatments for PSTD. I was looking for a shrink a year ago when one told me that he couldn t help me and another one was very arrogant. The current one takes a posture that it is all not a big deal and we all going to die. He advised me not to go back but I went for another infusion only to find out that the clinical trail did fail. They want me back on chemo even if it ckearly lost it effectivness but they want to keep trying and I agreed on that. They recycle the original Fofox. The one that was the hardest fir me. Butt. 

Annabelle41415's picture
Annabelle41415
Posts: 6387
Joined: Feb 2009

I'm so sorry to hear that the trial failed and all that you have gone through.  We have been wondering how you are doing since you have not posted recently.  You should try to find another doctor to help you with PTSD that deal directly with that disorder.  Hoping that this round of FOLFOX will give you better results.  Thank you for the update.

Kim

AnneO1965's picture
AnneO1965
Posts: 128
Joined: May 2019

I'm so sorry Butt... I have nothing to offer except much love, hugs and thoughts of you. Keep fighting.

Trubrit's picture
Trubrit
Posts: 5048
Joined: Jan 2013

Really, that never happens, but your account has truly shocked me.  

Saying 'I am so sorry', really doesn't express the horror I feel for what you have experienced. 

I just hope that it is up and up from here. 

I would be suing the hospital for your fall. To fall is bad enuogh, and after what you have been through, well, it is totally unacceptable that you were put in that situation where you would fall. 

I know you are a strong person, but everyone has their limits.  I hope the councelling helps with the PTS.

My thoughts are with you. 

Tru

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