elkiesmom

It still breaks my heart to think Of Dana Reeves death.After so many years of taking care of her husband after his death I thought Now it is her time to live and enjoy her son and what ever life held for her.Then she was diag with cancer and I also thought she can beat this after all she was not a smoker and was so young and in good health.Then she was gone. How so unfair. Lorrie

When ever Gary has a scan both of us think the worst and we are always proven wrong. Positive thoughts. Lorrie

Maryanne I am so sorry I didn't post Gary's results here on this thread but I started a new thread instead. Gary's results were as the ONC said unremarkable.So we have three months of a normal life without a care. there was nothing at all in his mid abdmonen to see and our onc even gave us our co pay back for the visit.The ups and downs we all have to go thri.Thankyou so much for your concern. Lorrie

That is good news. Prayers for more good news this afternoon. I would love to see the baby also. One is such a great age. Lorrie

Trish,Don,Randy and Tracy thank you so much. Lorrie

Kasey you are so right I would be so lost without this board.It is a place where I can let it all out. It is very hard to talk to are daughter since she really can't handle it well and our other family members have their own health issues.So you all are my family now and yes Gary is QUIT remarkable. Kasey I keep on reading your profile and you have gone through so much yet you give us so much of yourself. Thank you. Lorrie

We got the results of Gary's mid abdomen cat scan today and all is unremarkable.I am so happy.Thank you all with bearing with my vents.Our Onc was happy for us even though he said he knew there was never a problem and he even had the front girl give us our co pay back.Life is good. Lorrie

Michele what a wonderful thing you will be doing. Moffitt is my husbands life saver as is DR Sommers. He was our second openion when our first surgeon wasn't sure if Gary should have surgery.He had told us why go through all that pain in your last few months. Dr Sommers told us no problem we can do it and yes he did.We are also about 45 min away and I have to ask Gary if he would also like to put up someone in our house.I never though about it but I will now. God bless Lorrie

We were told that since the chemo is still working for several weeks after your last treatment our first scan would be in three months.Gary's first scan was a pet and a ct scan plus labs then three months later it was only a ct scan and labs three months later it was labs and an x ray and we are now starting again with the Pet and CT scan and labs one year after gary's last treatment. He will then do the same as last year for one more year every three months. I do believe after the second year he will go every 6 mos and then after 5 years once a year.If all goes well. Lorrie

Thanks Ernie That is what our ONC told Gary also when he gave the OK for the CT scan and Gary questioned him about the 4.7.That is why I am so upset that he did not order a CT scan but rather a colonoscopy since what I have read the uptake was closer to the liver and gallbladder.The report said it was right mid abdomen latrtally just inferior to the right hepatic lobe.I will also ask about hybrid scan but I think ins has a big say about that even though Gary had the ct scan done for the head and the PET scan done for the rest of him the same day. I don't know. Thanks again Lorrie

Stephanie Gary has had a few and this was the first time I heard about it also.This should explain it. Metabolic Imaging: How PET Scans Are Changing Oncology PET stands for positron emission tomography, and this generally uses a safe radioactive tracer molecule called 18F-fluoro-2-deoxy-D-glucose (FDG). Fortunately, that’s not on the quiz — you don’t need to know it. All that is worth knowing is that PET scans offer “metabolic imaging”, which detects differences in the metabolism of tissues. The most metabolically active tissues have the greatest needs for sugar from the bloodstream, and when the sugar is labelled, the scans detect these areas as “PET-avid”. The objective measurement is a number called a “standard uptake value”, or SUV, where higher numbers mean a higher metabolic rate. While metabolic activity can be increased with inflammation, infection, and normal body activities (organs like heart, brain, and bowel have uptake normally from regular ongoing activity — this is NOT a bad thing) the reason we all care is that PET scans tend to pick up cancer, because cancer cells generally have greater metabolic activity and are dividing faster than most normal tissue. As far as the picture of your Mom I asked the boards owner to do it.I would love to change the picture but I don't know how either. Lorrie

Ernie On the day of Gary's Office visit for the report results our ONC said everything looked fine but wanted him to get a colonoscopy. I was reading the report when he told us this. I asked him why as did Gary and he said well he is over 50. I then asked him if he thought the cancer was back and he said no that his labs showed nothing.He said nothing about the uptake in his midabdomn and when I asked him he said not to worry just have Gary get the colonoscopy.When I got home I read the whole report and saw the suv number and the advice by the lab for Gary to get a CT scan.The next day we went to our primary and asked him about the suv # and he had no answer and when we went to the gastro doc early this week he said he doesn't know anything about PET Scan numbers.We left his office and will never return and then gary called our ONC's office to talk to him. He called us back that night and Gary said he wanted a CT scan and what does the SUV number mean? He told us what it meant and when gary asked is 4.8 SUV something to worry about he said not really it is borderline but he would arrange for a ct scan which he did and that was today. We will see him MON for the results. My feeling is he doesn't read the reports until we all are in the office and as you know they are long and he missed it(svu #} and the suggestion for a CT scan. Early this week I was a bit harsh in my words about him since in the two years we have been going to him I have never had anything put positive results from him but our primary (who is worthless but does give us any referals we need) and the Gastro doc who will never see us again are a different story. I am just happy that we got the CT scan done and so gratefull that this is the computer age and we can do some of our own research. Lorrie

Gary just had his CT scan and we will see his ONC monday for the results.I have to stop my quest in being Gary's Doc. I have him having Liver cancer and then another type the more I read the less I understand what the mid abdomn right upper lobe laterallyy just inferior to the right heptic lobe.I am even dreaming those words. Heck I am not a doctor so I am putting all this info away and find out monday whats up but I will read the report before the ONC leaves the room.

Jen Thank you for your info. Gary's ONC called a few hours ago and he is setting up a ct scan for him in the midabdomen section like the PET scan report said. Gary did have a CT scan but that was from the neck up and the PT scan from the neck below.So we wasted a week but we are getting what we wanted thak God. Lorrie

Thank you Trish. Lorrie

Don where is Dr Wests Blog? I found the ASK THE EXPERTS archive but I don't think that is it. Lorrie

Muriel He for the last two years has been great.I see that you live in Florida as we do. Our Onc reffered us to Moffitt for the surgery and then he followed up with Chemo as a just in case(rather be safe then sorry}.He is in the Florida Cancer Institute and only 5 min from our home in New Port Richey.I just do not know why all three of the doctors (ONC,Primary and gastro) do not know what a SUV 4.7 means and as my brother said to him it seems to far up for a colonoscopy to be of any use. Gary has a call into our ONC for some added guestions.I do hate to change ONCS since the girls in the center can get past any no's by our ins.they fight for us.The Gastro doc goe we did not like him at all and a few times gary had to say you are not paying attention. He is also a DO and I would rateher gary see a Dr. Lorrie

The Doctor we saw yesteday was a gastro doctor.We even gave him copies of all Gary's records.When we saw our ONC last weak he said everything looked good BUT.....When I questioned him about the but he said gary's lab work showed no cancer so my reply was what was this mid abdomn right lobe thing and that is when he said for him to get a colonoscopy. It wasn't until I got home that I reread the report that said have a CT scan done to the abdomn. Lorrie

We went to the gastro doc yesterday and asked again what does an uptake in the mid abdomn upper right lobe UPTAKE being SVU 4.7 mean. His answer was don't know as was our primary's ans and ONC wouldn't say.I asked my brother last night ( he is a dentist in the navy and from what I told him he said a colonoscpy would not go up that high.All I want is a CT scan that was recommened on the scan report but nobody is hearing me.To me that would pin point any problems or am I wrong? Lorrie

What great news.prayers for another round of sucess Lorrie

Thank you Carol.

Thank you Kasey. I have been a very bad poster lately.I do read the board everyday though.

Thanks Don, Trish and Libby I must say that visit to the ONC today really thru Gary and myself. I really didn't know if it was good or bad.I am just so use to knowing about the Lungs but then he threw in abdomem. I am thinking what next. I was so glad that Gary's brain CT scan was ok lately he has been so forgetfull but he is also very busy at work and I do believe he has what is known as chemo brain.

Thanks Don we were not told that. You have eased my mind a bit.I should say a lot.Our Onc told us he should have a consult with a gastro doc which we will. Lorrie

Everything is almost OK. They did find in the reports words an area of uptake in the right midabdomen laterally. They then say it might reflect physiologic uptake or prehaps inflammatory or neoplastic uptake. They also still see something in his thyroid but it has remained the same since last April and we have had an ultrasound and blood work and they have all came out fine. Every thing else is fine but we will be going to see a gastro doc next week. Our Onc does not seem concerned and he will see Gary in three months to review X Rays that will be taken prior.Forgot to add they also found a patchy white area in his left lower lung lobe but they think it is from an infection and did not light up on PET scan.His right Lung minus the upper lobe is great. Lorrie