GregP_WN

I wish i would have listen more carefully to my doctors in my early life.

I love all the pictures you post on here. The tips are helpful and I am glad that you are here. :)Here is to a long remission!

GregP - your journey is really almost hard to believe. You are very brave. You were quite young when this was all happening to you. God bless your family. You truly are a survivor and an awesome person.

Greg the only link I have to my Journey is the update. A drop box opens with my diagnosis. I filled out a new moment-that all of my lab work is perfect-except for my thyroid that was affected by radiation, and 2 of my doctors are saying that it looks like tumors were killed off. I thought that might open my journey. I can't even see if that was added to the Journey, or what order it's in. I spent about an hour last night on my Home page and in my profile looking for a link. I clicked my diagnosis, my avatar, tried getting to it by opening 'add diagnosis'-but I didn't fill that out.. It's like the links to the Journey were closed, when I deleted the extra diagnosis that I accidently opened, when I tried to stage myself.

Greg, I think I know what part of the problem is in keeping up with the Journey, at least on my system. Once a person is signed in and creates their profile, they can't open their complete Journey and see each box we filled out. I noticed some software changes this last week. For myself, I'd like to read over my journey before I add anything. This program makes it impossible to shift boxes and make sure that you aren't repeating yourself. We can click on another person's journey and see the individual boxes at the top, and see the numbered list below the journey boxes, and we can like or make comments. We should see our own journey boxes, but we can't. I was looking at Jmig's journey. Then I tried to enter my own Journey. I was a WIKI site moderator a few years back, and I know that I saw the pages differently than the normal user, and I had more options. Perhaps people join, then plan on going back and doing the Journey, or finishing the Journey, but feel blocked by the format. It's just a thought. I know that I became very emotional when I filled mine out. Mine was hard-my care problems were on the legal and ethical side, and I was on speed dial with Loyola Law School in Houston. They volunteer to ACS to help patients that run into different legal problems.

Hi, Greg. Meema asked a question about hair loss today (Thursday, June 27, 2013). I'm writing this on Thursday evening and, at this time, 55 people have responded. Fifty-five people! What a great group we have here. I really do feel fortunate to be a part of it.

Hi, you and Dave asked me if I'd be interested in sort of getting something going for atypical BCC. Yes, I would.
I wanted to think about it, and my daughter left her husband and state yesterday. She always has been a drama queen, so that makes it harder on the family.
There just isn't anything much for us (BCC). People seem to think that we're stupid for getting past stage one or that we're lying. At least that's what I ran into-and keep running into. Nobody wants to believe that so many doctors seem to lack curiosity about something in front of them. My brother thought that he had a flat mole, but a corpsman cut it out. Then he had some cyst looking ones that were cut out. Ours never bled.
I just read grandma's post. Surgery-chemo radiation-she probably had her flesh and skin removed in the surgery area, possibly her bone. Some doctors will remove the bone even if the bone isn't involved. Her next probable step is Erivedge-and that's a killer. One man told me that it paralyzed one side of his body. They say you can take it about a year, but most people in actuality take it for 7 yrs for the cure. It immediately causes severe leg cramps, stomach problems, etc. If you take it for 2 years and quit-you're good for 2 years- then the BC comes back with a vengeance. I think that about 1 in a hundred finish the course. They won't prescribe it until you have MOHs, chemo and radiation.
My doctor's worries are that the BCC cells would drip into my throat and connect in there, or go into my lungs-with the lungs, I'd have 8 months. Several doctors have called atypical BCC a particularly nasty cancer. I'D APPRECIATE ANY ADVICE THAT CAN GIVE ME IN GETTING A CONNECTION STARTED 4 US-THE LOST SHEEP OF CANCER. Thank you

Hi, I saw that you did make a page for atypical BCC. Great- now if we can get people to fill out their journey and do more than just join, it would be great. Thanks---

Hi Greg;

Got your blog email and would like to add a comment but there is no way no how that I can see. I entirely disagree with the "there is no evidence" part of the grilling article.

How long is the process for your new choppers?

Did you simply have the cash or do you, perhaps, know of a way to get assistance or discounts? Thanx.

Hi Greg, about a week ago you and Dave asked me if I'd be interested in helping start a group/page whatever for people with aggressive Basal Cell Carcinoma. That way we could connect. Yes, I would like that so very much. I'm sorry, but I didn't answer sooner. It was a combination of wanting to think about it, and life happening.
My daughter has always been a drama queen, and she married the wrong person. Yesterday she left. Her brother is driving her about 2,000 miles to their father's place.
I think that I have a secondary low-grade fever/infection from the dog bite. The good news is that it's starting to look like I won't be charged for the ER or hospitalization. They really messed me up.

THANK YOU!!! I always love to read what you have to say:):):) always helpful:):):

I agree gravy is a no fail.thanks. I need something different every once in a while

Great news about the port,that must be a big relief. One more thing to get off your worry list. Good luck with your dental work.

OMG,That's why I want to keep mine. I'm beyond needle phobic so this port is my best friend. Sounds like you've been through hell and back, I hope you're feeling much better these days.
Keep taking good care of yourself.

thanks for your response.. I have a little saliva at times so it might be a fit for me. It's funny I had to hear it from you rather than the radiation oncologist. What Next is a fantastic forum for and source of first hand info for anyone involved with cancer in any way.

Thanks for sharing your experiences. You are truly an inspiration for a newbie like me (sclc stage IV extensive). I'm hoping to come away from this experience on the "right" side. Take care. Beth

Wow ! I wasn't expecting to hear that. 15 years and I'm worried about 2 ? Knowing that, I sure will stop stressing over it. I was told to have it flushed every 6 weeks,is that not necessary ?

Thank you for the welcome. I wish I had known during treatment. I will have ongoing tests and several mess for the rest if my life but I'm here and I have a life. I have what is called resistant/ recurrent thyroid cancer. I pray it does not return again but if so at least you will be here to talk to! Thanks again.

You think I'M the "card"? Niborflamingo outdoes me in that department (and in the smart dept, too), EVERY TIME! Ah, siblinghood!

Hi Greg,
Thanks for getting back to me. I just don't know how to use the basics of this site. How do I reply to someone? If you get this message it's all a guess on my part as I really don't know what i'm doing. Is ther somewhere I can go on here to find out? Thanks, Zoe

Hi! Having trouble with a script on the site. Would you please post this for me? It has to do with getting the body to kill leukemia by introducing genetically modified HIV cells which they think can do no harm mixed, at the chromosome level with the body's own killer cells ...

http://www.youtube.com/watch?v=K2-fd_2xE8g

The technique appears to have fixed young Emily Whitehead completely.

Greg, if anyone hasn't mentioned it lately, thanks so much for all your advice. I cannot tell you how much you have helped me get through my difficulties. In doing so, you have made me a better person. YOU ROCK!

Thank-you for responding back! I am starting to feel a little better, thank-you!

Hi Greg, It's me the pest. How do I finish my profile? I'm not seeing where I'm listed as having radiation-my staging T 2? I don't see any place to do it. When I registered, it wouldn't let me enter my head cancer, BCC. When I made my profile, I kept getting error messages and the software removed my data-even that I'm a female. My priority was to delete the superfluous diagnoses. Then I went to the Journey and wrote too much, but that didn't translate to filling out my profile of incurable aggressive atypical BCC T2, radiation treatment. So I have it in red that I haven't completed my profile. If you could help me with this, I'd appreciate it. Thanks much--Your dogs are cute--

Hi Greg,

Thank you once again for the email address. I just finished reading your journey...rather amazing. You have had a long journey to say the least. Your outlook has always been very positive. Keep up the good fight. I see where you had another cancerversary on April 4, 2013...is that correct? If so congratulations. My anniversary is November 3, 2013. I look at the day of my surgery as the day I became a survivor. This year on 11/3/2013 it will be 13yrs for me as a pancreatic cancer survivor. I feel blessed to be alive today. As we call it our new normal life. Based on what I read in your journey I'm guessing that you are 56??? I'm 68 and not working since 2003. How about you...are you still working? If so where at doing what?

Well that's it for now...and thanks for doing what you do for WhatNext. It means a lot to all of us who have battled this horrible disease. I believe in reaching out to help those who are newly diagnosed with cancer. Being a survivor means that you have another day to live, but you must live it with a purpose. My purpose is to continue this journey by helping others.

Take care Greg...
Best regards,
Russ

Thank you for the welcome.

how do i ask a question ??????

I need to know if anyone has had Gemzar ? Did you have a port or no port?

THNX-got unwanted diag removed. I was lookin 2 far down on page-sorry 2B a pest

Having trouble with web site. I have too many duplicate diagnoses. Pls email how to delete. jenkins_donna@yahoo.com