One patient with glioblastoma still alive nine years later
by Silent_Songbird on Wed Jun 27, 2007 12:00 AM
Dad was diagnosed in October with stage IV colon cancer with mets to liver and adreanal gland. He was put on a clinical trial at SMDC in Duluth Minnesota. We got the good news yesterday, that we can safely say that he is in remission!! The PET scan last month showed no active cancer and his CT yesterday showed that the spots on his liver have shrunk again..
His last treatment was in April...God will work miracles if you ask and believe!!!!!
by Argentina13 on Wed Jun 27, 2007 12:00 AM
by Tiffy on Wed Jun 27, 2007 12:00 AM
My family..too..is just starting the battle of colon cancer. Its my dad..he will start chemo next Tuesday for 6 months.. I am very afraid for him...and am looking everything up possible on the interent.. from nutriation..to side effects during treatments ..etc...very overwhelming...
I am glad to hear your good news... I hope i (as the daughter)..get the same news when dad is done in December.. Any tips..information..helpful advice.. you can give me..being a caregiver for a person on chemo? I know my dad will be tired... but I plan to be there every day with him... and try... to support..cheer him up..anything..
thanks for listening.. Christine
by Argentina13 on Thu Jun 28, 2007 12:00 AM
Advice from a daughter who has been with her dad for each of the steps of the last year. . .
Get a HIPPA signed. You need to be able to speak to medical personnel on your dad's behalf so get this form signed and notarized. Not sure where to get one. My husband made ours because he is an attorney, but see if you can get one on-line. There are forms for everything. Basically, it is a form that will indicate to the reader that you (or anyone else your dad chooses) can be contacted re: his condition. Very important in my case because I am very involved in my dad's case and have always helped translate for him. He feels comfortable with me in this role. Yours might feel the same. I have given a copy of one to his oncologist, his primary doctor, his surgeon, and the hospital where he's been for surgery.
Be the advocate. Don't let docs tell you (or your dad) that he is too old, too weak, or treat him like a number. The first oncologist we went to we had to go to because our insurance assigned him to us. His words left us with bile in our throats, but his message also fueled our courage. In my dad's own words, "I will die in this parking lot but I will not be treated by this man". End of discussion. It will take many phone calls to doctors' offices, insurance agents, lab technicians, hospital record rooms, etc to get things done and on a fast track. The medical world is very bureacratic. You make those calls for him and all he has to do is focus on getting well.
Don't read lab reports or look at CT/PET scan films without first talking through the results with your oncologist. We would get the PET film first, look for "spots" and then freak out for the next four days thinking he was riddled with cancer only to find it was a lung infection. Research on your own throughout your journey but leave that work to the doc whom you've chosen to be your "quarterback".
Laugh together whenever you can. There is still room for levity and laughter brings out the best in our bodies and spirits.
Plan ahead. Plan something positive and uplifting to do together when he gets discharged from a hospital or during the days when the chemo isn't making him feel fatigued. Give him something to look forward to.
Watch his diet. If it was never really good, introduce some good eating habits that help build immune system and strength. It's never too late to do better by our bodies.
I wish you every success, and I know each person is capable of great success. C.
by Silent_Songbird on Thu Jun 28, 2007 12:00 AM
On 6/28/2007 Silent Songbird wrote:Hi. The clinical trial that may dad is in, is thru St.Mary's / Duluth Clinc Cancer Center in Duluth Minnesota. It is sponsered by Roche Laboratories and it IS a nation-wide trial, so there may be one near where you live. He is on a 21 day cyle. He has an IV chemo-infusion, then 13 days of oral chemo, then 7 "free days". His IV infusion drug is called XELODA. The two oral drugs are called Oxaliplatin and Bevacizumab (I am not sure of the dosage of these, but I seem to recall that it is quite high...like 7500 mil per day..I can check and let you know if you want) In addition to the prescribed medication he also takes 3 tsp a day of Barley Green (1 1/2 tsp twice a day....this is an excellent natural remedy if you would like to research it), 300 mil of CoQ10 (this is a very good anti-oxidant that helps protect the good blood cells during the chemo process), 400 IU Vitamen E, 1000 IU Vitamen C, 35,000 IU of Beta Carotine and 100 mcg of Selenum. He also uses the anit-nausea medication that the doctor prescribed...it really helps. So far there have been no interactions with his Parkinsons treatment and the doctors do not anticipate any. He exercises every day by walking aprox 15 minutes, two to three times a day, on his treadmill. We focus more on time spent walking rather than on distance or speed. He never was big on exercise (walking was for people who couldn't afford a car, he would say !!!) Hope this helps. If you want to find out more about the trial, you could probably google SMDC Duluth Cancer Center and they have more info there. I will keep you and your father in my thoughts.
You're wonderful to share this news with me. I will look into it. We will keep you and your dad in our prayers. Here's to the two of them!
by Cptmac on Fri Jun 29, 2007 12:00 AM
Regarding PET and CT scans. Actually all lab tests. Find out how long it takes to get results and then make your doctors appointments accordingly.
I get my scans and draw blood at 7:30 AM. It takes 3 hours to get the results. I make an appointment on the same day with my doctor at 1 PM and have all my results given to me. Sometimes I take the last appointment at 4 PM. No waiting, no reading scans ahead of time. Nothing. We see them at the same time.
I know some people are different, and want to wait, but I want to know right away.
by Weadocm on Fri Jul 06, 2007 12:00 AM
by Cptmac on Mon Jul 09, 2007 12:00 AM
Also, I'm glad that he signed up for a clinical trial. I did too. I signed up for a Stage II clinical trial using Irinotecan and an HAI pump. I am a Stage IV colon with mets to the liver. I've had no evidence of disease since September of '04.
When you sign up for a clinical trial, you are at the forefront of receiving the newest medicine for a disease.
Congrats, and keep us posted on the good news...
When you track a discussion, you will get notified by e-mail if anyone else posts a new message on this discussion. Are you sure you want to track this discussion?
If you stop tracking this discussion, you will no longer get notified by e-mail if anyone else posts a new message on this discussion. Are you sure you want to stop tracking this discussion?
If you were considering traveling for cancer treatment, which headline would you find more interesting?
Destination: HOPE. Cancer care that is worth the trip.
Over 84% of our patients travel to our hospital from another state
Neither headline is interesting
We care about your feedback. Let us know how we can improve your CancerCompass experience.