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Primavera's picture



Primavera's picture

Diagnosed today. Questions.




Celebrating 22years cancer free of Adult onset PNET

Today I am celebrating 22 years free of a medistatic Primative Neuroectodermal Ewings Sarcoma.

I was diagnosed at the age of 47 with metastatic disease. Followed by radical excision, 2. 1/2 years of treatment that included multiagent chemo and radiation.

Today, as every year, I reflect on my survival. I always wonder how many more adults diagnosed with PNET are survivors like me. I wonder if there are any, if they suffer the long lasting side effects of the treatment, such as I do. 

I am just glad to be alive and have beat the odds for survival. 

It's In My Blood

I have an existing blog that may be found at itsinmyblood.blog.  Please visit it.

scarlett21's picture

It's getting closer...

I did the ovarian today freezing procedure a couple of days ago. One of the incisions still hurts but I'm getting better. I get admitted to Sloan on Friday to start the transplant process. It's so close. I don't want it to be here. At least I get my own room. They said I can have visitors so that's a good thing.

I got a new phone and I finally activated it today. I haven't taken any pictures with it. I'm hoping it's better than my old phone (which had a piece of **** camera). 

Forherself's picture

My story.

December 10, 2017 approximately, I had Uterine bleeding.  I had been menopausal for about 10 years.  I was 66.   I had what I describe as a light period, bright red light bleeding for about 5 days.  It was right before Christmas and I was concerned.  I am an RN and knew what this could be.  I went to my Family doctor, who was wonderful.  She immediately ordered a pelvic US which I had the following week.  I waited until after Christmas to see her.  I hd the US in Jan which showed several things.  A mass on my ovary, a polyp I believe on the outside of my uterus.

Mybrotherskeeper's picture

My ironic journey

Well I'll begin this by saying that I don't have much family. The most important people in one's life for at least the majority of the 18 years that they take care of you until your legally considered an adult are your parents. Not that many of us are fully ready for all that truly being an adult means and are still very much dependent on your parents or at least that was my experience. Life is unfair and there is nothing you or anyone can do to change that is one of many lessons that pain has taught me.

Ryanfan's picture

Scared Not sure what to expect Need some advise

Well I went to the doctor yesterday thinking I was having a problem with my appendix. She examined me and felt that it was probably pain and nausua related to appendix or gallbladder. Dr asked me to have some blood tests and really wanted to do a CT scan just to see if this was an emergency situation or if we had more time to make a care plan. I agreed to the scan and thnak god I did. My appendix and gallbladder where fine the doctor said when she called me last night but she then went on to tell me that I have RCC in my right kidney there is a 2 cm tumor.

Stillstandn1Mo's picture

75grm daily protein menus needed

I am a caretaker and I am looking for a menu for my loved one.  They have  to have a 75g daily protein diet.   Being African American our culture foods seem to complicate the planning.   i am needing to know a good menu for breakfast, lunch and dinners.   Can someone help.   Also will this help my loved one lose weight.   They are over 200 lbss, Also fluid intake is 8 cups a day.   My question is shouldn't that be mostly water or do you include juices, koolaid, tea and coffee in with this plan.   

my history

It is as if they had put all your life in a box, shake it with force and open it on the other side". This is the phrase that Marcos, the psycho-oncologist of Chus and of the AECC in Santiago, told me, and it is honestly the one that best defines this situation. 


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