I am sitting at my doctor's office and just took my first dose! I am in a 2 week clinical trial and I will need to be here today for 10+ hours. Yep, 10 hours. Claudia is visiting me today and bringing lunch. What an awesome friend she is!! Today and then again on Monday the 27th, I will need to have blood drawn every 30 minutes for the first 2 hours and then every 2 hours after that up until 10 hours. It is a part of the trial to measure absorption and then how the body gets rid of the drug - Tuesday - Friday of this week and next I'll come in once a day for a blood draw. During the 2 week trial the dosage will not be the normal dose. After these two weeks, I'll get rolled over into getting the drug without any of the blood draws and it will be the full dosage. I"ll be taking the drug at home once a week. I'll then see the doctor once a month and get scans every 8 weeks. I'll be on the treatment for as long as it is working. My doc explained it like this. If you have a pipe with a leak and you put your hand over the lead, the leak stops. If you take your hand off, the pipe leaks. This treatment has not been proven to cure, but manage. That is fine with me. As long as there isn't growth, tumors don't hurt you.
Side effects should be minimal, but with everything it is a wait and see game. The drugs effect everyone differently, so we'll see what effects it has on me. Should be minimal nausea and fatigue with the most common side effect being non-melanoma skin cancers. My skin will be checked once a month for any changes. I'll have photographs taken of my skin to compare. If anything looks funky, we'll remove it. There hasn't been any cases of having melanoma lesions only non-melanoma.
I also found a lump just below my left breast. My doc looked and it is on my last CT scan, but was not indicated by the radiologist. He says it is not in the breast tissue and is just under the skin which leads him to believe it is a melanoma tumor. We are not going to biopsy it, but will keep a close eye on it. Once I am on the treatment I should be able to feel it getting smaller. A good indication it is working before I have a scan. I'll have a scan just before I begin the rollover (full dose) so that we know the size of the crazies. This will ensure that we are comparing before and after treatment sizes. This is just in case there was growth or shrinkage since my last scan in November.
Have I mentioned how much I LOVE my new doc? Not only is Dr. Gordon highly knowledgeable about Melanoma (YES!), he is also one of the most caring doctors I have met along my journey. During our initial consultation, he thoroughly answered all our questions and we didn't feel rushed. We were at his office for over an hour during which he left the room to research some questions. Seriously! I haven't had a doctor yet that has left the room to research a question. Nothing against my Tucson buddies, but there we left without all our questions being answered with a "come back and see me in a week" response. Another 4 hour round trip drive and co-pay later we may have our answers. I also need to rave about all of the nurses and staff. They are all so friendly. Everyone I pass smiles and says hello. Awesome doc with wonderful nurses, I couldn't be happier!
Anyhoo, I'm really excited to begin today and have the drug begin to work in my body.
I'll keep everyone posted.
9 comments:
There are thousands of people praying for you. I know you feel there prays. Stay focused on the task at hand and God will walk with you in this new journey. All the love and support you need is with me....
Love forever Your Mom
Sending all our positive energy your way!!
David & Suzanne
You are such an inspiration to all of us. We are praying for you girl!!! Jackie
I am so excited that today marks the start of the treatment that YOU want and believe in. I'm very excited to see your progress in the coming weeks! <3 CB
Yay! So happy you are able to do this treatment. Here's hoping your side effects are minimal, or better yet, non-existent. We'll continue to keep you and your family in our prayers!
Lucy and family
Tina - great update & wishing you get everything you want from this treatment (with no side effects too!)
Praying for you for a succesful treatment!
Anna
Tina..... Positive energy and prayers are sent your way! You are a remarkable woman! Prayers are sent to you everyday!!
God Bless you
Patty Gibson
I am so excited for you. What an exciting way to begin the new year, with HOPE and your family. I know everyone keeps saying how strong you are but you are Tina what a blessing to have that strength to get you through. I know I don't have a right to be proud but I am so proud of you and love you dearly.
Tina, you don't know me but I'm a friend of your mom's since we were 8 - and you KNOW how long that's been! I just wanted to give you my thoughts and prayers, and tell you to KEEP GOING!
Deb Davis Jastrebski
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