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For those who have loss of a Loved One....

KayCe234
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After speaking with a few people who have lost a love one because of NF and after a request, I decided to start this thread. I hope it can be a place for those who have lost someone to come and share their experiences. I know that those of us who have not had a personal loss can offer our love and support, but it is different when you can talk to someone who is walking in your shoes.

I hope that this section will help to bring you peace.
With much love,
Kristen

Explore topics in this discussion:

Cancer Hysterectomy Stroke Neurofibroma Pain Liver cancer Sutent Sarcoma

7 replies

MomandRN

My mom died of GIST (gastro-intestinal stromal tumor) a cancer that may have been a result of the NF1. She was 56. My grandad died of Alzheimer's..but since he was 93 I am not so sure I would correlate it with the NF. My aunt also had NF and died of pancreatic cancer..not sure if it was related or not.

sweetiecat

I am so sorry for so many loses you have had to endure. I've had several loses also but, non of them due to nf. I'm a gene mutation with no children so no one else in my family has it. Sorry

tresham

We have all lost a few these past months and weeks to NF, haven't we? Some were good friends, some were online acquaintances, but no matter how well we knew these people we all felt something when they passed.
I'm curious about the GIST. I lost my oesophagus and some of my stomach because of Barretts gone bad. My neurologist here wondered if it could have been GIST. It was not ever mentioned or discussed by my specialists in the USA, and my new belly doctor doesn't seem to think so. I have a fairly healthy diet and I don't smoke so the doctor was just curious.

MomandRN

Well her's started out in her intestines. It seemed to be a blockage at first. I thought she probably had an impaction. However, scans revealed it was cancer. I am not sure if it was just super fast growing or what, but no one mentioned it when she had a complete hysterectomy about a year and a half prior to finding out she had cancer.

First she had part of the intestine and tumor removed and then went on Gleevac. There was no growth for awhile and it even appeared to maybe be shrinking. Then she started having horrible pain and they found out it was growing again. She then went on Sutent. It got it not to grow, but not shrink either. She had a colostomy at this time was well. The chemo (both were oral) made her really sick, so she decided to stop. She felt better then, but of course she still had cancer. In some ways I think she thought feeling better meant things were going to get better, even though the doctors told her they would not. She was offered to be able to be in a clinical trial in Nashville, but declined. It was a double blind study and she did not want to take the chance of being the placebo (I know it didn't really make sense to me either, how just not doing anything is any different)

Here is a link about GIST. It mentions esophageal involvement in it.

http://emedicine.medscape.com/article/369803-overview

basemann

i lost my mom almost 4 yaers ago she had nf as i do she pass away from liver cancer i took care of her as soon as we fine out about it it only took 3 month we tryed everything to get her better but nothing worked l was very close to my mother and l mis her every much there is not a day that gos by that l dont think or talk to her miss her so much

stumpythebumpy

My sister Pammie died at the age of 13 in 1978 from neurofibroma-sarcoma, she was 2 years older than me.
her dying wish was to see The small world ride at disneyland. our town raised money to send her, burgerking even had a "Pam Moore day" and donated 50% of all sales to the cause...we got to disneyland and as we pushed her wheelchair to to the attraction, WE all saw the sign "sorry "it's a small world is temorary closed for rennovation"..i will never forget the disappointment on her face...and I was only 11 years old.she also sufferd from scoliosiss and severe athsma.................not to end on a bad note, but things like this are the reason I have lost all faith in a so called "god"

nancy57

In our family, we have over 11 family members with NF. My grandfather died in 1970 from a stroke, had a leg cut off before that time and was 70 years of age. (he had NF). My mother died in 1996 at the age of 73, also had NF and had Alzheimer's. My brother had a NF tumor on his brain stem and died at the age of 30 in 1978. This was before the invention of the MRI. My uncle who had NF was in his 80s died a couple of years, but not from anything with NF. The rest of us with NF, so far have fairly mild cases. That includes several cousins, their children, my sister and myself. For me, I have curvature of the spine, that has left me in a lot of pain along with the other symptoms that are related to NF. One of my cousins with NF has three or four children, but no one knows how many have NF. He doesn't associate with any of his family members any more. It is a sad case as even his own brothers, sisters don't know what is going on. I just take each day as it comes.

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