It’s been four weeks since my last chemo. I’ve been working a lot lately and then last week, took time off to join Ken on a work trip to Shanghai. We had a great time. I always enjoy traveling with him. He always sees so much more than I do. He has such a sharp eye and I with all he shares I enjoy a much richer experience. Of course he had to work most of the time. But we were lucky to have all the evenings and an group outing together. A cold and fever put me out of circulation for a day. It gave me a chance to read and relax. I picked up a book Ken had brought along, Lone Survivor. It’s a fast read about a SEAL teams’ experience in Afghanistan. The cough is still with me.
Monday Ken accompanied me to my routine CT. In the evening we celebrated our 1st wedding anniversary with a special dinner at Mr A’s. It was wonderful to remember our incredible day and all those that shared it with us.
Today we saw Dr B for the results. It was not anything I expected. The Taxotere quit working and my tumors have grown and there are new ones. The main one is about 2″ in diameter. My cough (which started a few days before we left for China) was attributed to the tumor blocking one of my airways. It’s given me a “Darth Vader” sound when breathing. It is leaving me short of breath. I’ve got an inhaler to help. This problem will be treated with radiation. The plan is to shrink it dramatically and hope it will stay small for quite a while. It can then be retreated as needed.
This is only tumor that is practical to treat this way. Chemo treatment is needed for the rest. The problem is which one. I’ve now exhausted 3 of the 6 traditional available treatments. Dr B advises I check into clinical trials available at the City of Hope and USC Norris. I am more likely to be eligible now than if I wait and use the other treatments now. We’ll be using the time while going through radiation treatment to meet with the oncologists and see which, I am eligible for. Then we’ll discuss the choices with Dr B.
I hope it will go quickly. With the tumor growth I’ve had with Taxotere, I don’t like getting no treatment at all for even a short while.
It was such an unexpected setback – and such a big one. For now, Ken and I are too stunned by the news and busy with all the new plans and appointments to be fully hit by it. At times we both struggle not to cry.
Today we’ve already met with a radiologist at the Cancer Center, had a preparation session (for my marker tattoos), and had my first treatment. I have treatments scheduled for the next two weeks – daily except for weekends. It only takes about 20 minutes and there is no pain at all. The most common side effects are fatigue and, due to the area treated, a sore throat. My cough and shortness of breath will possibly get worse for a few days before it starts to improve.
June 24, 2009 at 2:55 pm
I love you and I am thinking about you always.
June 24, 2009 at 4:17 pm
Sheila/Ken – There is a new drug out called ALK Inhibitor in a Phase I trial. It can be found at 6 centers around the country in including one in Irvine, CA. I found out about it from the CU Cancer Center in Denver. I am going to make an appointment and check it out. Last I knew, there were only 24 enrolled worldwide. The one Colorado patient, a woman, responded very well to it. It is an oral pill. Probably a targeted therapy. If you GOOGLE “ALK Inhibitor”, you will find some info on it. Here ia a story about it:
http://cbs2.com/health/lung.cancer.alk.2.1032932.html
It was presented at the ASCO Meeting recently as a new and promising drug for NSCLC. Only a small percentage of patients have the right gene mutation. They would need a sample of your tumor to make sure that you fit the requirements. If you have problems finding out about it, let me know and perhaps I can help.
Best regards and Blessings,
Steven
June 24, 2009 at 4:57 pm
I too love you and think about you always.
My family and I will continue to pray.
Thank you again for sharing Hallie’s bridal shower with us. As you know it surely made our day!!
Love,Caylynn
June 24, 2009 at 5:19 pm
Miss you and love you! Glad you got to take the trip with Ken. See you soon!
June 24, 2009 at 6:42 pm
Love you, if you need a lift to any of those appointments, just call.
June 28, 2009 at 8:25 am
oh, my friend……please call if you want some love ……hang in and tell ken…that he is the man…..i am so sorry for your pain.
love you, m.