Looking for others with Gastrointestinal stromal tumors

[chrissymb]

Hello,
I recently had a 12cm GIST removed from my small intestine. Im 45 yr old female. This is very rare. Just looking for others with the same type of cancer. My latest PET Scan showed more activity. I've been on 600mg gleevec for almost 4 months. Would like to hear from anyone who is going through this or has also. Thanks.

[tgronski]

Hello,
My husband was diagnosed on June 14th with GIST. He was severely anemic due to the primary tumor in his stomach bleeding. The primary tumor was removed with about 1/2 of his stomach on June 22. He has many dozens of tumors in his liver. The surgeon decided to biospy the liver (a second time) during stomach cancer. The liver continued to bleed and a third hospitalization was necessary to get the resulting anemia under control and drain his abdomen. It has been a horrible month for us. He is 40. He is unable to start the Gleevec until the bleeding has been well controlled for 3 weeks. I am so worried about him despite the good news reported regarding Gleevec. The oncologist has not been very straight-forward with him, and he doesn't want to know what will happen next, Gleevec side effects, his prognosis etc. I WANT TO KNOW. I spend every available minute researching. I would love to connect with others who have this type of cancer. I have many questions. The gistsupport website is full of great information, but it is all so general and a bit impersonal. Please post if you or a loved one has this cancer.
Thanks for listening.
Tammy

[Regena]

Hi Tammy,:bigsmile:

Welcome to the forum sweetie. I was so sorry to read about all that your husband and you are going through. I see you are also registered for the Adult - Sarcoma & Rare Bone Tumors forum. However, I didn't see where you have posted there. I am the moderator for that forum and want you to know we have an awesome group of loving and caring people there.

I did a search for "gastrointestinal" on that forum and came up with several posts. Please copy what you posted on the "Seeking Others-Helping Others" forum and paste it in the "Adult-Sarcoma & Rare Bone Tumors" forum also. I am sure you will be hearing from some of our wonderful members who are familiar with GIST if you are in both places.

Please know I am here for you anytime you need me. If you just need to talk or need a shoulder you can click on my profile and email me. Also, I have free long-distance and would be happy to give you a call, just let me know. I joined the forum looking for info about PNET, so unfortunately I am not familiar with GIST. However, I am a good listener and sounding board anytime you need me. You and your husband will be in my thoughts and prayers every day. I care very much about you both so please feel free to let me know anytime you need someone to talk to. Big hugs to you both.

[mommaof2]

I'm copying and pasting again sorry, but I feel that's the easiest to describe what's happened.

2 1/2 years ago my husband was finally diagnosed with GIST when he ended up in emergency because he was in so much pain he couldn't handle it anymore (they had misdiagnosed him for almost a year with ulcers/ acid reflux).
They scoped him in and found a large tumor on his stomach. They estimated it was within a day or two of tearing through the stomach wall so they performed emergency surgery. They removed his entire stomach, the 9 cm tumor, his spleen and part of his pancreas. They wanted to be aggressive in order to help him the best they could. He recovered and went on a Gleevec clinical trial for 1 year.

About 4 1/2 months ago they found an enlarged lymph node. They told us that they would wait and see on his next scan and if it was bigger they would have him go in for surgery to remove it. About 2 weeks ago they told us his latest results. The tumor had doubled and was now 3 cm and they had found more spots towards the back of his abdomen and sadly in his liver. So now it breaks my heart that it is now metastatic. They said they won't be doing any surgery because of this and he will be going back on Gleevec. God willing it will still work.

My husband is turning 35 this December, I'm 30 and we have 2 kids, a 4 1/2 year old boy and a 1 1/2 year old girl.


If either of you feel like chatting I'm here.

Take care.....

[chrissymb]

Hello Tammy & mommaof2,
Its been a while since I've been on here. October will be a year since I found out I had GIST. So far so good. Im still on the Gleevec. I just had a PET scan. abdominal ct scan, Small bowel series & my gyno doctor did a biopsy. The Pet scan has been showing a small hot spot at my surgical area every time but my other test came back good. The doctor said its from surgery. It took me about 5 months after surgery to finally get my energy back.
I will keep you both and your families in my prayers. My faith has helped me stay positive.
I have a new grandson. His smile makes me so happy. Our youngest is ready to go to kindergarten.
I am still taking the Gleevec 400mg a day now & the iron every other day.
Sorry to babble on. Hang in there. I know how tough it is.
Take care, Chris

[mommaof2]

Hi Chris

That's great to hear that things are going well for you! Helps remind me how great Gleevec can be.

My husband is also on 400mg a day now. When he was on the clinical trial it was the same. How long do you have to take it for? They told us this time my husband will basically be on chemo for life.
How have you been handling the side effects? (Thank God that Gleevec is pretty good in that area) My husband has his ups and downs, but he still forces himself to go to the gym no matter what. I think in a way he wants to make sure that if or when things get worse he'll be ready to fight with everything he has....mentally and physically.

Going through this has really given me insight into how tough people with cancer can be.....how hard they can fight!

Hang in there and you'll be in my thoughts and prayers as well

[chrissymb]

Hi mommaof2,
The only real side affect I have is my eyelids are a bit swollen in the morning. I do get a few aches & pains that I didn't have before. I was anemic for a while but finally thats normal now.
I started back on my treadmill this week. Im taking it slow. I have gained about 40 lbs since my surgery.Last ocotober.
I think its because I was pretty inactive until my hemoglobin was normsal& I quit my job when I found out I'd be having surgery.
I asked my doctor if I would be on the Gleevec for life & he said lets take it 3 months at a time.
Goodluck to your husband.
Last year was so difficult for me. In 8 months I lost my mother-inlaw, mother & father. Then found out I had cancer.
But with all the prayers & support I have tried to keep a positive attitude.
Write me anytime, My husband works on the River for 3 weeks at a time & Its nice to have others to talk to.
Chris