Dear Makua, welcome to our extraordinary family but I am so sorry to read about your son. Glad you are no longer a lurker! Please do not apologize for your post, as a mother myself I probably would have exploded by now. We are here for you and your family, members come here to rant, rave, advise and get advice. There is no one monitoring our posts we are an open forum. I am really surprised at JH and SK as most of our members have gone to several Hospitals and the ONCs work together. The only other suggestion I could give would be to send Discs from both hospitals to Jewish Barnes in St Louis to Dr. Chapman and to MDA Houston to Dr. Javle and ask them if they can give you any advice. Wish I could tell you more but I know others will be posting, it's always slow over a weekend. Stay with us, we truly care.
Re: My Introduction to the club and trouble finding help for my son (2 replies, posted in Introductions!)
Roxanne, I just found this older post for you to read:
My husbands oncologist is Dr. Anthony El-Khouiery at University of Southern California, Norris Cancer Center. He is one of a handful of oncologists whose area of research is CC. He travels the world going to meetings about Hepatobiliary tumors. He is also a really great guy and a straight shooter.
His surgeon was Dr. Yuri Genyk at University of Southern California. This man not only has miraculous hand, he is also a very dedicated doctor. I cannot say enough about what a great job he did in making my husband cancer free. He was in surgery for 17 hours!
Dear Roxanne, welcome to our extraordinary family and I am so sorry for all you both have been through from the beginning. A lot of things did not seem right to me but the past is the past. Kaiser is not known to be an easy company to work with. You might ask your ONC to go to bat for you. I am also wondering if you called Kaiser would they give you a list of Surgeons who perform CC surgeries. Then we can check out that list. I know others will come along with some suggestions, you are not alone! Please keep us updated as we all truly care.
Dear Deborah, I am so happy to hear about Don's shrinkage. That is great news. As for eating, look at my first post below your first post. I would also suggest talking to his ONC about it. He might have some other suggestions.
Keep up the good work on the Chemo and please keep us posted. Go Don Go!
Ha, Ha Janet, I meet with the Neuro Surgeon Monday. Knocking it all out of the park one by one. Just a tad curious but since I already know its benign I can take it. Hope you are doing good, love to see you still watch over us!
Hi, Randi, Girl! I think of you as I know for sure you have been through so much more and look at you now!
Thanks Caroline. I am so blessed to have the Docs I do. I know Teddy is watching over me as well.
Hi Pam, love seeing you on our site for any reason. I know if you were here you would give that radiologist what for. But I do understand his being cautious. Now on to other things.
Hey, Sonny boy, yes please tell Mum hi and so far so good.
Thank you Carl & Lynn, you are one special couple!
Thank you all, and once again I am lucky to be me and to be on this Board!
Re: My trip to the Naturopath (18 replies, posted in Complementary & Alternative Treatments - CAM)
EVERYONE PLEASE REMEMBER TO TAKE NOTHING WITHOUT FIRST TALKING WITH YOUR ONC! I KNEW SOMEONE WHO WENT THE NATURAL PATH WAY WITH LYMPHOMA AND HE JUST PASSED THIS LAST DECEMBER AT 52 YEARS OLD!
I just found mine but honestly I have NEVER posted anything here that I would not want to be seen. I totally agree with Cathy. This CC is one big rare monster and if our site helps just one person I feel that I have done something huge. I think the way Google and etc is set up everyone needs to be cautious but there is nothing on our posts that others should not see. But that is an interesting development. Guess Big Brother is always watching.
Hi Duke and it sound like you are really Nuking the CC, good work. Can't help on the chemo just wanted to say I love your progress. Continued success and get that sucker zapped! Thanks so much for the update.
Aw, my Cookie! Sure wish you could take a trip here. BTW I had an egg roll the other day and it was almost as bad as the one at the Lake! I am still tired from today. Strange, I can't sleep but am very tired. Take care, luv you!
Hi everyone and thank you! I tell you God and Teddy are some kind of partners! Nothing! Nothing at all. There is a teeny tiny hernia somewhere, don't remember but absolutely cancer free. Too cute. They rolled me into the Endo room and I said, "Oh, Dr. Mahajani we have to stop meeting like this" and he says, "that's because we love each other so much"! I WAS LAUGHING SO HARD AND THE NEXT THING I KNEW I WOKE UP IN RECOVERY!
They feel the radiologist who read and reported my scan saw shadows and felt they may be masses. YEAH! Masses of nothing. So now I meet my Neuro surgeon Monday and we know that will be something but NOT cancer. I am going back to sleep but Marion knows me too well, yes I will be on later!
Kris, I could never pull off height as lovely as you do! I am all set for tomorrow. The hospital actually called me twice guess they couldn't believe the first set of surgeries and meds! LOL You and me girl, we sure know how to laugh our way through. Hey, speaking of that I miss you!
Porter, I never comment on chemo since Teddy never had it. I do know that it is a tough decision. Like I like to say, make a list of pros and cons and see which side is longer. Grade school but it works. Also ask the ONC what 'could' happen in 3 months if you took the break. Wishing you the best on your appointment and sending you a ton of hugs.
Thanks everyone, you all give me a mountain of strength. I will not be having twilight sleep but will have the real deal type anesthesia so hope I get to go home same day. Guess I better beautify myself today just in case! Never know. A good looking anesthesiologist might have a Dad around. LOL
Just a note everyone that the Hospital did not have a scope long enough but should for Thursday morning, You would think this little 5' girl was 6'! So I am now scheduled for Thursday morning at 1000AM. Also found out it is called an Interoscopy. Always learning something new. I tell you Fri was the ONC, Tues the surgeon and I am already schedule for the test Thurs. Feeling really lucky tonight.
Dear Matt, welcome to our fabulous family. You certainly did all the right things and Congratulations on your successful resection even though there were some bumps in the road. you get a big YIPPEE! I hope the rest of your recovery goes real smoothly. You have come to the right place for help and support. Wishing you the very best.
Yesterday visited with my GI and he is taking a back seat so to speak as he knows that for a while now I will be with Dr. Runfola…the surgeon and Dr. King the Neuro Surgeon. When I was leaving he put his hand on my arm and said, “you are going to be just fine because you have someone with a lot of power watching over you.” I said you mean Teddy? He smiled and said yes. Love him!!!
This afternoon was the biggie with the Surgeon who got me in to the office in just a day. Robin came also. WELL! He is not so sure my cancer is back and feels the Radiologist read it wrong!! Dr. Runfola read all my other scans from the first time around and can’t even feel it as Dr. M could not feel it either. So, I left and he called Dr. M and asked if he could do an Endoscopy that would reach that far down and Dr. M said he would try. Then Dr. M called and I am scheduled for tomorrow afternoon. It will be a regular anesthetic because he has to go so deep. I am going in at 1PM they will do it at 230PM and then we will know for sure. I forgot what the test is called. Robin will be with me. I am so blessed with my Doctors!
Until we know we shall now remain realistically optimistic. I am exhausted! But in a good way.
Hi Don, I will give a stab at this, since I am computer illiterate aside from posting! Go to the post you want and copy it and then paste in your Microsoft word, save and print. This way you can save a bunch of posts in one section and print when you want. Good luck.
Derin sound like you are on the tight track now. Negative biopsy sounds great to me. Sounds like you caught the big one and without fishing! When Teddy would get those nasties they put him right on a Levequin IV and that took care of that. But glad you are feeling better. Isn't it something? You could go to a 2 week resort, be pampered to the inth degree and pay less and enjoy it. Say, that's an idea!
Dear Lou, I believe you are normal. I had a delayed reaction after Teddy too. It is not how you handle it now it is what you did for your Mum while she was here. I am so glad you can feel her around you and there will be more to come. I have a list of what to look for if you would like it, I think you would enjoy reading it and perhaps you will realize all the ways in which you can know she is around. Knowing what to look for has always brought me such comfort. A few years before T got CC we talked about how we would reach
each other from beyond. We decided a touch on the cheeks. All of a sudden I will feel a touch, lighter than a cob web, it comes on the top of
my hair, and across my forehead. Guess he has not learned to do the cheek yet. This happens often and it did on our anniversary. Last
night after I found out yesterday that my cancer returned I was on the
computer from 10PM – Midnight and he was right here for that 2 hours
touching my hair and forehead. He stopped for awhile and I told him I am going to be OK and that I was not worried. And then he started touching again. I went to sleep so calm and peaceful. True!
Dear GSKelly, I am sorry to hear what your wife is going through but I do know this.....you can do NO wrong by taking her to Barnes! In fact I would do that and soon. Otherwise you are doing all the good and correct things. So much of this is hunt and peck. I hope you get in sooner than later and get some good news you can use for the fight! Jus6t a reminder to have her graze during the day for nourishment and protein shakes are good too. Best of luck and please keep us posted.
Oh, Sharon thank you and I hope you are doing OK in your new normal.
Don't know why I am getting these crazy things but I guess someone has to have them! Now my family is fighting over who is going to stay here with me. OMG I don't even know yet when the surgery is and I hate having someone in my house when I am healing. Haven't figured this out yet except to tell them I will call them if I need them! Nice to be loved but there is a limit! LOL Stay well.
Dear Pam, boy do we know how to be strong. Miss you and hope you are doing, well, OK. Talk about strength you invented it. I am fine waiting to get the appointment with the ONC Surgeon. Well at lease the appointment to have a little discussion, ok a big discussion. I love you too and please take care of yourself, Lauren would want that.
Re: I will never be the same again since the loss of my beautiful mother (7 replies, posted in Grief Management)
Oh, Desiree, you have made me so happy. Keep up the good work girl! We are always here for you.
Hi Randi girl! The funny part is I don't feel this is happening! It is all too surreal to have 2 at one time. I really am OK, thank you Lexapro! I think I am more concerned that my Sis in law, Maria told me today that after April she wants to come back here for about 6 weeks! OY VEY I love her to bits but 6 weeks? LOL Waiting now to hear from the ONC Surgeon and will update. Went to dinner tonight with 2 of my Grandsons and their life long friend. What great young men they have all become. Hope everything is good in your part of the world and thanks.
Wow, Kris. I have learned as well this week that its all so much KRAP. I know just how you feel. So much mental stress and ups and downs. I am curious as to where they tried to put the PICC? Teddy's was on his right shoulder. I wish it had gone well as it really makes life easier.....wait, is life ever easy? I hope the infection leaves quickly and the port placement goes easy and well.