kelley_gleason

Hi Kelly- I haven't been on this site in awhile and was just wondering how you are doing?? I hope well!

Hi Kelley! I started doing my oral chemo this week and thus far no problems. I won't hold my breath, though! You are an inspiration. Thanks for being here.

Hi Kelley hope you are doing well at the hospital and the nurses are taking good care of you! Love the smiley socks!

Celebration (Breakthrough): VERY VERY HAPPY NEWS FOR ALL CANCER PATIENTS.
CANCER HAS BEATEN.INDIA'S HISTORICAL LIVING LEGEND WHO SAVED TAMILNADU FROM famine on 2009, 2010, 2013 WITH HIS GAME (THINK HOW)has OBTAINED CANCER MEDICINE DIRECTLY FROM LORD SHIVA SUPREME OF ALL GODS FOR HIS STRUGGLES

Hi Kelley! You have a list full of experience. I'm just getting started. They found neuroendocrine cancer originally on my liver (March 2013) and since then on my lungs, pelvic bone, spine and now pancreas. They believe the pancreas is the origin. Yet, I am symptom free. I start Sutent on Monday.
Any thoughts, tips, etc??

Yes similar but different. I have High Grade PNET, therefore very little treatment options for me. It is small cell so they won't do surgery. Too many mets on liver . I had 6 months of Chemo plantenol and VP16...had some success. They offer nothing else. Affinitor and Sutan do not work on high grade nets. as a maintence drug. I have been to Sloan, NYU, Mt Sinai...I am holding my own at the moment, last chemo was March. I have turned to natural supplements and wheat grass and am feeling well. Now thinking of trying Rick Simpson Oil. Your story is an inspiration Kelley! Stay well

Just saw your inspiring video with Greg. You are a beautiful and strong woman and you are in my prayers. I was diagnosed with Stage IIIC ovarian cancer on 01/18/12 and was determined NED in April of the same year and by the grace of God, I'm holding strong. Good luck to you and God bless you.

you are amazing !!!!

Hi, Kelley
I don't know anything about NET, but learned a little from the posts. I was attracted to your wall by your longevity and stage 4. I'm BC initial stage 4 dx. I wish you the best of luck and science and spirit. I may "unfollow" you so you can focus on those with similar dx, but I do hope your health stays steady or improves.

Kelley...Wow,liver resection and a whipple,you must have gone through hell. I had the body and tail of my pancreas removed and my spleen.That was bad enough, but so grateful I didn' need the whipple. When you say the recovery was worse than you thought it would be, in what way,pain?
How long did you have to stay in the hospital after the liver resection ? What were the results of that?
I hope you're doing wel'l and thank you for your note. Zoe

How r things going for you? hope u r doing fine

Hi Kelly I was so sad to miss the day at the lake. Brian and I went to Cheyenne for thr Alan Jackson concert and a friend of ours took care of Nathan. When we picked him up Sun am he had a horrendous sun burn! He had taken off his swim shirt and spent several hours at the pool without putting it back on. So I really did'nt want him to get any other exposure. He was shirt-less yesterday and today and by tomorrow i hope he can at least put something light on. I was so sad to miss everyone. I am hoping to plan out a regular time after school. Start to help nancy and mark with epic. What have you decided to do about work? Thinking of you... Jen

Kelley, I too have NET of pancreas. Do/did you have tumors elsewhere when you were diagnosed?

Kelley, this really is not a solution for pain exactly, but because mouth sores tend to get larger, and more painful, I tended to bite my tongue and lip more at night.......and it is painful! With this going on, the sores just got larger, more pain etc. So, I saw an ENT dr. He told me to wear a mouth guard at night and this helped so much. I realize this doesn't help with th pain, but it will eventually reduce the surface area of the sore. If your dentist has not made one for you, I THINK a mouth guard can be purchased at a drug store. I hope this helps you. I am sending you love and peace, Nancy/moonbeam

Thank you for your response ! Yes- I would really appreciate it if you would ask your doctor for someone he would recommend!

Have you been getting the Sandostatin injections? Is the affinitor in conjunction with that?

Looking for people to help me get through caring for my mom with a NET. She is stage IV with it in the liver as well. I'm only 30, but have been caring for her since 2007. It has been very hard on me. Any advice and words of wisdom through you would help!

Hey Kelly, what are you going to be taking Sutent?

Magic Mouthwash, which contains lidiocaine and benadryl help control the pain and swelling, and it works really really well. I also used canker pads to cover and sores. My ENT prescribed Dexamethasone a steroid mouth rinse which cleared up the out breaks in a day or two.

One of the pluses of taking oral chemo, is that the side effects are not as bad, because you take a small dose each day, instead of getting hit with a monster dose once a week for 2 or 3 weeks in a row. Another plus, is that I went in for blood work and to see my oncologist every 4-6 weeks, these visits took between 1-3 hours (depending on factors beyond my control). Instead of spending a min of 4-6 hours at the infusion center 2 out of every 3 weeks. Neither of the meds caused me to miss treatment due to bad blood counts - which has been an on going issue for me since mid August.

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