Day two is drawing to a close. Things have been going pretty well so far, however, Heather is beginning to lose control of her fingers, so I will be taking over the blog for awhile.
She has talked to a few people that haven't been in the room, but one person she mentioned on facebook today was actually here. We were just paid a visit from King 5's "Jesse Jones"
Jesse has kidney cancer, and the treatment for kidney cancer is IL-2. He went through the same treatment as Heather about a year ago. I read an article about it in Pacific Northwest Golfer a couple of months ago after Heather's first trip down here.
Today, I happened to ask Heather's nurse if he was working when Jesse was down here, which he was. Several hours later the nurse came in and told me to stick around because Jesse Jones was on the way in to visit our neighbor.
So, 20 minutes later, Jesse Jones stopped by to chat with us before his visit next door. Heather and Jesse exchanged a few IL-2 stories and he offered her up some words of encouragement. He was very impressed that Heather had made it through two rounds and was back for two more.
Anyway, back to our Heather. She is handling the first few doses very well. Starting to get a bit itchy and red. Also, getting the "jimmy legs" a bit too. The drugs to combat the side effects are working well so far. She was able to sleep most of the afternoon. Her blood pressure has slowly been dropping since we got here and finally got low enough that she was put on the "pressor" medication, "Neo." She was still able to receive her 4th dose of IL-2 at 6:00. 4 for 4!!
We have been told several times that she definitely won't make all 14 doses this time, but we all know Heather... She still plans on all 14!! Next dose scheduled for 2:00 AM.
"Kelly D." not King 5 news...
Tuesday, January 31, 2012
Monday, January 30, 2012
Off and Running
Today has been a very busy day! Fortunately, everything has gone smoothly.
I had my apheresis this morning at the Puget Sound Blood Center. My appointment took about 4 hours. They removed about 200 cc's of white blood cells (leukocytes). We then carried them in a cooler to SCCA. Who else gets to do that!? Those cells will be frozen for possible use later if needed.
We met with Dr. Margolin at SCCA, went over the plan. Simple plan, kick some butt again!
My room in the ICU wasn't ready at 1:00. I wasn't surprised. That actually gave us time to grab some lunch. Perfect.
I called the UW while we were at lunch and was told we could get in at 2:00. Again, perfect.
So, with a full tummy, we head to the hospital. We got through admissions quickly and into a room. Another room with a view. We met with the nurse and nurse practitioner, checked vitals, now it's time to get my PICC line placed. That went great. A little ouchy but what can you do? Off to get a x-ray to check PICC placement. Spot on. Back to my room to wait.
I got my first dose of IL 2 at 6:15. Felt pretty good, waiting.....after about an hour, low and behold, I am super uncomfortable. Crawl out of my skin uncomfortable! Nurse Helen to the rescue! Demerol!!
Instantly, I feel so much better!!
Just had some dinner, probably won't be hungry after today.
Next dose at 2 am!! It's going to be great!
Thanks for all the well wishes and words of encouragement!!!!
Heather
I had my apheresis this morning at the Puget Sound Blood Center. My appointment took about 4 hours. They removed about 200 cc's of white blood cells (leukocytes). We then carried them in a cooler to SCCA. Who else gets to do that!? Those cells will be frozen for possible use later if needed.
We met with Dr. Margolin at SCCA, went over the plan. Simple plan, kick some butt again!
My room in the ICU wasn't ready at 1:00. I wasn't surprised. That actually gave us time to grab some lunch. Perfect.
I called the UW while we were at lunch and was told we could get in at 2:00. Again, perfect.
So, with a full tummy, we head to the hospital. We got through admissions quickly and into a room. Another room with a view. We met with the nurse and nurse practitioner, checked vitals, now it's time to get my PICC line placed. That went great. A little ouchy but what can you do? Off to get a x-ray to check PICC placement. Spot on. Back to my room to wait.
I got my first dose of IL 2 at 6:15. Felt pretty good, waiting.....after about an hour, low and behold, I am super uncomfortable. Crawl out of my skin uncomfortable! Nurse Helen to the rescue! Demerol!!
Instantly, I feel so much better!!
Just had some dinner, probably won't be hungry after today.
Next dose at 2 am!! It's going to be great!
Thanks for all the well wishes and words of encouragement!!!!
Heather
Sunday, January 29, 2012
Here we go again...
Well, as I said in the last post, the doctors said, "It worked so good last time, so 'let's' do it again.". So, here we are again, in a hotel in Seattle, just had a great night out (Primo's on 8th is great btw) and tomorrow it all starts again.
I'm a bit nervous, anxious, mildly nauseated, etc. I'm elated that the treatment worked so well last time and am ready to stomp on the cancer while it is down, but.... It's sure was nice feeling back to normal. I was to the point that I could go well over three hours without thinking about this terrible disease 😊. Now it will all be thrust back on us.
It is a bit harder going in this time because I feel so good, but at the same time, I know that the disease is still there, and this is the best plan of attack.
Thanks so much for all the thoughts and words of encouragement. It truly does help me get through this stuff. I (we) will keep you posted thorough this next round of treatment.
Tomorrow will be a busy day!
I'm a bit nervous, anxious, mildly nauseated, etc. I'm elated that the treatment worked so well last time and am ready to stomp on the cancer while it is down, but.... It's sure was nice feeling back to normal. I was to the point that I could go well over three hours without thinking about this terrible disease 😊. Now it will all be thrust back on us.
It is a bit harder going in this time because I feel so good, but at the same time, I know that the disease is still there, and this is the best plan of attack.
Thanks so much for all the thoughts and words of encouragement. It truly does help me get through this stuff. I (we) will keep you posted thorough this next round of treatment.
Tomorrow will be a busy day!
Tuesday, January 17, 2012
The plan as of today
After conferring over the phone and through emails, the plan is to go to te Puget Sound Blood Center(PSBC) on January 30th early morning, then to the UW to check into the ICU in the afternoon.
At the PSBC I will be undergoing leukaphersis procedure. In the process I will have 2 large bore IV's placed, one in each arm. My blood will be drawn from one arm to a machine. The machine will separate out and collect white blood cells (leukocytes). The machine will then return the remainder of my blood to me through the 2nd IV. This will take 3-4 hours. This procedure is being performed as a part of a research study. My collected white blood cells will be used to grow T cells. These T cells will, in the lab, be 'trained' to recognize my melanoma. This will be done using a sample from my tumor that has had some genetic testing performed on it. These T cells may at some point be given back to me to see if my immune system can recognize and fight my cancer. The modified T cells would, if used, be used in conjunction with a medication. At this point, probably ipilimamab. So, right now, it is just a collection process. The T cells will be saved for some time down the road when I may need them.
Next, I am scheduled to check into the ICU, UW at 1:00 pm. Hopefully a bed will be available. You just never know?
I will undergo the same treatment sequence as last time. Around 5 days in ICU receiving IL2, about 9 days at home, about 5 more days in the ICU, then home to recover. I am so hoping my blood pressure stays high enough, my heart rate stays low and regular, my breathing is good, and that I leave my PICC line alone. What else, well I guess I'd like it to be easy. How's that for a wish!
I know what to expect, ths is a blessing and a curse. At least I will know that IL 2 works for me as I endure the discomfort of the treatment.
I am looking forward to seeing some good friends and family before I start treatment again. I know that I probably won't remember most of February, such a strange feeling. You can probably look forward to some incoherent texts and or posts. I hope they make you laugh.
I appreciate all the love, support, inquiry and positive energy that I get everyday from all of you!!!
Heather
At the PSBC I will be undergoing leukaphersis procedure. In the process I will have 2 large bore IV's placed, one in each arm. My blood will be drawn from one arm to a machine. The machine will separate out and collect white blood cells (leukocytes). The machine will then return the remainder of my blood to me through the 2nd IV. This will take 3-4 hours. This procedure is being performed as a part of a research study. My collected white blood cells will be used to grow T cells. These T cells will, in the lab, be 'trained' to recognize my melanoma. This will be done using a sample from my tumor that has had some genetic testing performed on it. These T cells may at some point be given back to me to see if my immune system can recognize and fight my cancer. The modified T cells would, if used, be used in conjunction with a medication. At this point, probably ipilimamab. So, right now, it is just a collection process. The T cells will be saved for some time down the road when I may need them.
Next, I am scheduled to check into the ICU, UW at 1:00 pm. Hopefully a bed will be available. You just never know?
I will undergo the same treatment sequence as last time. Around 5 days in ICU receiving IL2, about 9 days at home, about 5 more days in the ICU, then home to recover. I am so hoping my blood pressure stays high enough, my heart rate stays low and regular, my breathing is good, and that I leave my PICC line alone. What else, well I guess I'd like it to be easy. How's that for a wish!
I know what to expect, ths is a blessing and a curse. At least I will know that IL 2 works for me as I endure the discomfort of the treatment.
I am looking forward to seeing some good friends and family before I start treatment again. I know that I probably won't remember most of February, such a strange feeling. You can probably look forward to some incoherent texts and or posts. I hope they make you laugh.
I appreciate all the love, support, inquiry and positive energy that I get everyday from all of you!!!
Heather
Saturday, January 14, 2012
Believe it!
It's been awhile since my last post and I have some new, good news!
I had another PET scan on Wednesday the 11th and just went to my oncologist in Bellingham, Dr. Rubin, on Friday. We looked over the report and the images from my scan. The 2 lesions that were present and actively taking up glucose in December are now smaller and not active. "No persistent abnormal FDG activity within the previously noted subcutaneous nodules." This is of course fantastic news! Also, the report states there is no new metastatic disease.
I have now read the report maybe ten times! It just doesn't seem real. Although I know that it is. Kelly and I could not be happier. It is still scary, I can't help but wonder when it will come back. But, I can't live worrying about things I can't control. I am doing my best at that.
So, because the IL 2 worked so well for me, Dr. margolin has 'offered' me another round. We are going for it! It may seem crazy, but I am glad to have he opportunity for more IL 2. I feel that it worked so well, why not kick my cancer while it is down. Maybe it will then stay away for even longer. I'm not saying that I will enjoy it.
Dr. Margolin also has asked if I will participate in a clinical trial. I dont know much about the trial at this point. I am going to participate and I will certainly learn more about it soon. I will also start IL 2 soon. Date yet to be determind. Of course all of this comes on a holiday weekend. Another lesson in patience for me. Next week will be filled with calls, planning, and maybe appointments. Here we go again.
I feel great! I feel strong! I am ready to fight again!
Lots to think about. Lots to celebrate!
I had another PET scan on Wednesday the 11th and just went to my oncologist in Bellingham, Dr. Rubin, on Friday. We looked over the report and the images from my scan. The 2 lesions that were present and actively taking up glucose in December are now smaller and not active. "No persistent abnormal FDG activity within the previously noted subcutaneous nodules." This is of course fantastic news! Also, the report states there is no new metastatic disease.
I have now read the report maybe ten times! It just doesn't seem real. Although I know that it is. Kelly and I could not be happier. It is still scary, I can't help but wonder when it will come back. But, I can't live worrying about things I can't control. I am doing my best at that.
So, because the IL 2 worked so well for me, Dr. margolin has 'offered' me another round. We are going for it! It may seem crazy, but I am glad to have he opportunity for more IL 2. I feel that it worked so well, why not kick my cancer while it is down. Maybe it will then stay away for even longer. I'm not saying that I will enjoy it.
Dr. Margolin also has asked if I will participate in a clinical trial. I dont know much about the trial at this point. I am going to participate and I will certainly learn more about it soon. I will also start IL 2 soon. Date yet to be determind. Of course all of this comes on a holiday weekend. Another lesson in patience for me. Next week will be filled with calls, planning, and maybe appointments. Here we go again.
I feel great! I feel strong! I am ready to fight again!
Lots to think about. Lots to celebrate!
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