Discussions that mention gleevec

Cancer board


I would like to know more about what you mean by treatable. Can Gleevec make the cancer go into permanent remission? Can surgery? Thank you
Hi Wendy. Hopefully you are still around on here. I was recently diagnosed with a GIST tumor on my stomach near my liver. Just like your mother, mine was found by accident after I went into the hospital with unrelated intestinal pain. It took them a year to diagnose the tumor- they originally thought it was a cyst on my liver that I repeatedly heard was "nothing to worry about."

Anyway, it was removed along with 10% of my stomach. Now I am starting with an oncologist and he is telling me I should take Gleevec. I am concerned about doing this because it is so experimental and the long-term effects aren't known. How has the medicine effected your mother? Has she had any side effects? Any recurrences of cancer?

Also, out of curiosity: does your mother have Irritable Bowel Syndrome? That is what I originally went into the hospital to look at and I've had stomach intestinal issues for about five years.

I hope to hear back from you. :-)
I have seen much success with GIST patients who use Gleevec. It is the most effective form of treatment to date, other than total resection with negative margins. It is rare, but there are people who are dedicating their entire research to Gleevec and GIST. If your mother's doctor reccommended Gleevec, and was actually able to correctly diagnose a GIST, you are probably in very good hands.
Hi, I went to the doctor in June 08 for abdominal pain. I took a CD of a CT taken in June 06 and the radiologist jumped! I have since had 30 dr appts and surgery to remove a tumor from my pancreas. I thought OK, I am done and be on with my life. The surgeon came back with the pathology and told me I needed to see an oncologist. Knocked me on my butt. That was just Oct 1. I have been on Gleevec since then and seem to be ok. Though I have a lot of mood swings. I have a CT and octreotide scan scheduled for next month. So we will see if it is working. I am also getting sandostatin injections once a month.

On a side note, my chiropractor's father has been on gleevec almost since it came out and is doing very well on it.. He has leukemia and it seems to be helping him. I also talked to a women here in Denver who also has been on gleevec for a long time and she swears by it.

I hope everyone is doing well..

Kati
Lex,

Are you still around? I would really like to speak to you regarding your experience with GIST and the Gleevec. I am freaked out about this whole thing that has happened in the past month. Volleyball sized tumor, operation, cancer.. It's a lot.
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[QUOTE=dfacerdm;3981965]Lex,

Are you still around? I would really like to speak to you regarding your experience with GIST and the Gleevec. I am freaked out about this whole thing that has happened in the past month. Volleyball sized tumor, operation, cancer.. It's a lot.

Dave
626 864 3283
Hi Dave,

I check in here every so often and I just found your reply. It sounds like you are going through quite a lot right now. I'd be happy to talk through here, but I can also call you this weekend if you have questions, need advice. I don't know what help I can be but it couldn't hurt.

Alex
Hi Dave, my name is Kati and I have been taking Gleevec for almost a year now. I am taking this for a neuro-endocrine tumor of my pancreas. Everyone thought that the tumor was benign until one little lymph node came back positive for metastatic disease. So goes my journey.

I have good and bad reports for the Gleevec. First, my cancer has not come back and no signs of any other tumors any where. But on the down side, I have lost a lot of my hair. Not as bad as regular chemo, but enough to be noticeable. I also have some stomach problems at times if I don't take it right. That meaning on a full to semi full stomach and a lot of water. I am on a very low dose - 200 mg/day.

I had a chiropractor whose father has been on Gleevec since it came out many years ago for leukemia (its original purpose), and has had great success with it. His dad doesn't like close so I have never talked to him, but reports are good.

I hope this helps some.

Kati
Bailey:

I have not directly heard of any clinical trials of Gleevec being given before surgery, although I wouldn't rule it out. I know this is a drug that is still relatively new- I believe it was approved by the FDA in 2001. I also consider myself a healthy, athletic person and at 31, I never expected to face cancer. In your case, it sounds like you are better off in diagnosis than I was which may be why the doctor is suggesting a clinical trial. I think you are right in seeking a other opinions.

Gleevec has been described to me on multiple occasions as a "wonder drug" capable of stopping or reversing the effects of certain types of cancer, namely GIST and leukemia. Unlike other more popular consumer drugs, there is not a lot of reliable information available about Gleevec beyond medical circles.

In my case I was fortunate because my tumor was discovered early and completely resected. I have since undergone a number of PET scans, CT scans and blood tests with no further indication of cancer. As ordered by my oncologist, I am taking Gleevec for one year as a "preventative" measure against recurrence. I have remained cancer free since my surgery in September 08.

As for side effects addressed by Kati in another post: I have also been fortunate not to experience any major side effects from the medication, but like Kati I do get nausea and upset stomach if I don't take the medication with a full meal and water. I take 400mg a day.

This is more information than you asked for but hopefully it will help address some of your concerns. Good luck with your hunt for insurance (a nightmare all its own) and feel free to contact me here again soon!

Alex
Alex:

Thanks so much for your reply. More information is better than not enough; I do appreciate your efforts. I'll be seeing the second opinion later this week. However, on Sunday I finally met with the first surgeons who were going to perform the surgery yesterday (Monday September 28) and I have a better understanding of what is happening. They decided against pre-treatment because my tumor is resectable; supposedly GLEEVEC does not work on everyone and they did not want to risk the possibility of the tumor growing larger or staying the same;they just want to go in a get it out no matter how much stomach it may costs me and then treat me with GLEEVEC. I took a few illustrations of Billroth GIST surgical procedures so I would have an idea of what I am facing. Billroth II is what they suggested wherein the lower portion of the stomach is removed and the cut border is attached to the jejunum (the lower bowel) past the duodenum.

The second opinion doctor suggested pre-treatment of the tumor with GLEEVEC so I could keep more of my stomach. We will see and I will make my decision fairly soon so whatever surgery is needed will happen in October sometime. He will most likely want to do his own version of testing. I also thought about the Holistic approach but this may be too serious to go that route. What do you think?

You are 31 years of age: just so young; just starting your life and this comes along. I am a very young looking and vibrant 53 year old female; have always been healthy, marathoner, spinner, rower; life was going along just fine until . . .lost work this year but still doing okay; had to drop my health insurance, and of course, now I need it. Thanks to a friend, someone is helping me secure it again at least for the next 6 months which will get me through the most difficult time; then we will see.

Keep in touch and let me know how you adjusted to eating after the surgery the first week or better yet the first month.

Sincerely
D.:jester:
Hi Kati;

I'm glad you are doing well; I'm just starting my journey; I may end up getting GLEEVEC prior to surgery; will see this week; keep in touch with your stories; we can learn from them;

All the best,
Bailey (Dee)
Hi Dee,

It's been a while since I had the opportunity to check in here. Where are you at in the process? You may be in surgery as I write. In that case, I wish you the very best and I'm confident that everything will turn out fine for you.

The more details I hear about your situation, the more it sounds like my own. My tumor was completely resected, as yours likely will be. Fortunately, they only removed about 10 % of my stomach, and besides the month or so of recovery post-surgery, I am eating full meals now like nothing ever happened. I was initially very scared because doctors would not rule out the possibility of having to remove more of my stomach once they were in there and looking around. If that is a concern of yours I wouldn't worry- it sounds like your tumor was noticed quite early.

I am coming up to the end of a year of Gleevec post-surgery with virtually no side effects. This a more of a preventative measure. The only problem is that I occasionally get nausea if I don't eat a full meal with my meds. As for the holistic route: I wouldn't rule out that holistic methods could assist you, but I would follow doctors orders and take Gleevec as well if recommended. This drug has proven to work effectively in a number of studies. Of course, I take common sense care of my body as well- running, eating well, sleep, no alcohol (a requirement for taking this medication).

Again, my blessings are with you during this stressful and difficult time. Please let me know the outcome of your surgery or where you are at in the process.

:-) Alex
[QUOTE=LexLuthor77;4100215]Hi Dee,

It's been a while since I had the opportunity to check in here. Where are you at in the process? You may be in surgery as I write. In that case, I wish you the very best and I'm confident that everything will turn out fine for you.

The more details I hear about your situation, the more it sounds like my own. My tumor was completely resected, as yours likely will be. Fortunately, they only removed about 10 % of my stomach, and besides the month or so of recovery post-surgery, I am eating full meals now like nothing ever happened. I was initially very scared because doctors would not rule out the possibility of having to remove more of my stomach once they were in there and looking around. If that is a concern of yours I wouldn't worry- it sounds like your tumor was noticed quite early.

I am coming up to the end of a year of Gleevec post-surgery with virtually no side effects. This a more of a preventative measure. The only problem is that I occasionally get nausea if I don't eat a full meal with my meds. As for the holistic route: I wouldn't rule out that holistic methods could assist you, but I would follow doctors orders and take Gleevec as well if recommended. This drug has proven to work effectively in a number of studies. Of course, I take common sense care of my body as well- running, eating well, sleep, no alcohol (a requirement for taking this medication).

Again, my blessings are with you during this stressful and difficult time. Please let me know the outcome of your surgery or where you are at in the process.

:-) Alex
Alex: Thanks so much for keeping in touch. I have not had the surgery as I changed doctors and went with an oncologist/surgeon from UCLA, Fritz Eilber. Starting next week we are trying the Gleevec prior to surgery for 30 days to see if the tumor shrinks; then a PET/CT scan; then surgery will be decided; probably not for a good 3 months. Just pray that it works. I think I am playing this smart and want to explore all options before all else fails. I am glad you are well and life is back to normal. Will need your advise on the side effects you felt after taking the Gleevec. :)

All the best,
Dee