kris00j
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Sending prayers and positive thoughts that your dads embolization goes great tomorrow! Keep us posted.
Mary,
I hope you enjoy your trip to Lourdes. As for these bumps in the road; I kept asking God what he wanted of me and why he kept making treatment plans work for a little bit and then either stop working or I had to stop because of side effects. I was SO frustrated! I got the answer a few weeks ago when I finally broke down and changed oncologists. She is the one who suggested this trial. As I left the first meeting with her (which was 45 minutes long) I looked up and thanked God for finally hitting me over the head. I fully believe he led me here. And to get in the trial other treatments have to have proven not to work or to have made the patient unable to continue them. That’s my story. This is what He wants. So now I thank Him for leading me to Dr. Denlinger.Mary,
Some people call this a roller coaster ride, but I call it Chutes and Ladders! You think you are getting somewhere, only to slide down the chute. Ugh!
I am sorry you are going thru yet more problems. All I can say is the SBRT SHOULD be a piece of cake compared to eat you’ve already experienced. I had fatigue when I did it. That’s all. I pray that will be your biggest side effect.
I think I responded to one of your previous posts, but here goes: SBRT bought me 7 treatment free months. The radiated areas are still quiet, but the disease has spread again. From the looks of the node, it might have already been cancerous and treated with chemo: it does have signs of necrosis. But not enough.
I was at MSKCC also, but recently changed to Fox Chase Cancer Center. I will be participating in a clinical trial using a new drug that is NOT chemo! They are accepting candidates. Please remember this IF (and I pray you won’t) you need this. By then it might be to Phase II, and much safer. Please contact me if you want to know more. Kjacobson8@yahoo.com or 267-625-9873.
I start the trial 1 week from today, and will keep everyone posted on outcomes, side effects, etc.
Good luck with the SBRT. I will pray you get many years of “QUIET” cells.The biopsy is Wed. I have to be there at 8am….. And a poor friend of mine needs to get up and take me! Good to have friends!
The only thing I am worried about is the biopsy, even tho the drug really isn’t proven. But I’m trying to give it all up to God. (I just forget sometimes!)I have been approved for the clinical trial! Biopsy is scheduled for next week and I start the trial the following Monday, the 22nd. I can’t wait to see how well this new drug works!
I have been approved for the clinical trial! Biopsy is scheduled for next week and I start the trial the following Monday, the 22nd. I can’t wait to see how well this new drug works!
Hi Cathy and Walt.
I had problems when my onc asked eat I wanted to do, also. I’m not the specialist, although I think many of us on this site are beginning to feel like specialists!!
I hope the chemo cutbacks and changes continue to keep cc at bay. Have either of you looked at any radiation options? Or clinical trials? The reason I ask this is that eventually (usually) the response starts to slow down and the toll it takes on the body can be hard to deal with.Pam: thrilled to hear you are home! I can’t help with the fluid retention but I called my feet the “Shrek” feet!! I hope Lauren’s swelling goes down quickly.
Great blood work! WBC and RBC are barely low. Platelets are normal, bilirubin is 0.1 (normal 0-0.4 at FCCC) and the best news!! CA 19-9 levels 48.8 (normal at FCCC 0-37)!!!!!!
Of course, the nurse says they might be TOO good. If the lymph node doesn’t light up the ct scan I can’t be accepted into the clinical trial. But if the ct scan shows no affected node, then maybe it WASN’T cancer!
I’m on such a high if I wasn’t so tired I’d be jumping for joy! Now to wait to see the results of the ct scan tomorrow or Wed…… Not gonna stress about it….Suzanne,
Thank you for the update. I’m so sorry it isn’t better news. My thoughts and prayers are with you and your family. I agree with Lainy: hospice can help him be comfortable when you get him home.More hours on the phone again!! GRRRRRRR is right Gavin! Denied again, then approved again! My case worker is another pit bull. Shes the only good thing about AETNA. So much for being off Xanax tho!
And anyone who thinks this is US based health care– I spoke to a senior supervisor who (it turns out) is in Manila! WTF??? AETNA, gotta be glad I met ya! NOT!!Lisa:
I wasn’t thinking when I was talking about the trial I am on but I believe the Cleveland Clinic is one of the 3 hospitals involved. Just something to keep in the back of your mind…..
Sorry you have yet something else to worry about, and I hope the allergist can help.
Lots of love and prayers you get great results Tuesday!
Good choice though!