Hope everyone is doing well. Went to Duke today for Avastin and a checkup, but no scans. My next scans will be October 30. I did get cleared to fly again, so that was positive. When I was in the hospital for the lung deal, I was unable to do Avastin because of internal bleeding concerns. Now, this is my second time doing Avastin since then and I really feel good about it. It is really funny about side effects, they kind of tell you how the medicine is doing. Example: When I was in the hospital and could not take the Avastin, I was still taking the Tarceva pill that I take daily. The doctors think that the Avastin helps the Tarceva really "get in" and do it's job. One of the side effects of Tarceva is acne like stuff on my neck and face. When I stopped the Avastin, my face cleared up and was again like the Bo of old. Now I am back on the Avastin, face and neck is bad again. I am not complaining, the worse the rash, the better it is working I think.
My neck Duke trip is 10/10, then scans 10/30. I also talked to Duke about the lung transplant idea. I am really working on them. Susan said she would rather me do it at Duke rather than Stanford, so that is positive. I am leaning this way. The decision is:
Do not do a lung transplant, count on science to save me and make this a chronic disease treated by medicines. If this does not come true, I will die...
Do a lung transplant and trade one illness for another. Basically, taking medicine to help my body not reject the new lungs. If new medicines came out later, then I took the chance when I should not have.
What would you do? Think about it and post it on this blog so everyone can see. I do read the posts, I promise!
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This is a blog for all of my friends to come to as I fight lung cancer. I wanted to make sure everyone had a place to see all the news of what is happening and how I am trying to beat this disease. Make sure you visit the archives for the complete story as well.
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17 comments:
Hey, Bo! I got all caught up tonight on what's going on in the Johnson family! I also went out to watch the Channel 6 news report - really awesome! From the message you posted tonight, I can tell we've got the same 'ol Bo - just putting it out there - black and white...here's the facts...now make a decision. Pretty tough one, as always. You know in your heart that you've already decided what to do - and, if not, the only one that can help you make that choice is Christi. I'm still counting on seeing you in Orlando and hope that I'll have the chance to meet the whole family. You're amazing.
All my best and God Bless,
Sharen King (from MSM)
Bo, Please remember that if you do decide to go for the double lung transplant, that you will have to wait for a donor match, which often can take months. If it was me, I would go on the waiting list for the double lung transplant now, and also hope that something new will break in the near future per a new medical treatment, etc. But, that is a decision you and Christi will have to make...good luck and keep on fighting.
They are right it could take a while to make it to the top of a waiting list A friend on mine is on a waiting list for a kidney transplant and has been there already for a year. I think he is about 4 from the top. The only thing is they requested that he not go more than an hour from home. So it is alot to think about and you and Christi will make the right choice we love and support you two no matter what you decide.
Harveys
What an unbelievable delimma to have to consider. On the one hand, what an amazing miracle that either of these are even viable options available to you. Modern medicine is amazing. On the other hand, what an unfathomable and heavy issue to contemplate and make decisions on. For those of us not facing such choices your questions are someone theorehtical in our brains but you (think I'll start calling you Brave Bo Blunt) you take the issue straight on and move right to the decision making process. Me on the other hand would probably ask for a third option. "I have two lungs right? Let's replace one and treat one and see what happens!" Silly I know but I'd be paralyzed into fear of any drastic decision to either side. Of course, I also have trouble with decisions like what to have for lunch!
Bo, you never cease to amaze and astound me. We've only met in person a couple of times but I have grown to have such admiration and respect for you. Your courage and attitude are so amazing, you are an inspiration and example for us all. What ever your decision, I know that I speak for everyone when I say that we support you, are praying for you, and send you Christi, Addie and the rest of your family all our love.
If you receive the lung transplant, will you be on the medicine not to reject them indefinitely? What is the acceptance rate for this type of transplant? I know it must be an incredibly difficult decision. I applaud you for tackling everything head-on and educating yourself on all of the options. You really are an inspiration. I appreciate you sharing your story with us and all of your efforts with Addi's Cure. We look forward to Touch a Truck on Sunday.
So, I will be honest...I have NO IDEA which one I would choose or which one you should choose! Go with your heart...it never fails you! I love you!
Rachel
I vote for continuing with the meds and getting on the transplant list. Who knows what new breakthroughs will happen in the meantime. You are a fighter - keep it up!
Ok so I've thought about it all day and I would say go for the transplant. I'm not the gambling type so I'd rather take the option we know than hope for something that may or may not come along in time. There are always new exciting breakthrus in research but there are lots of failures for every sucessful drug or treatment and it take years for these to make if from the lab to the hospital.
I agree with the previous posters about having to wait years for new lungs and who knows you may get a treatment that works in the meantime.
I obviously don't know all the information that the doctors have given you but from a purely philosphical point of view these are my thoughts. I am sorry that you have to make such a choice but I support whatever you decide, follow your heart it will never lead you wrong.
your cousin in CA,
jenn
Brendon and I looked at it this way - life or leg, no question there. Much tougher with your lungs. Is it possible to go on the transplant list and then only have the operation if they're sure the chemo is no longer doing any good? I know, that's a best case scenario. I really do hope and believe that they will develop new technology, drugs, whatever that will be able to target cancers better in the next 10 years (yes, that's a long time respective to this bitch of a disease). Anyway, as long as it's not growing, we're for staying on the drugs as long as you can and keeping you around as long as we can for you, your family and friends. If you have to face surgery at some point though, we're there for you every step of the way. Good luck with your upcoming scans. We're sure thinking of you guys every day.
-Peony & Brendon
If the transplant offers a greater chance of immediate death and a greater chance of long-term normal life, then I would choose the transplant.
I had a bilateral lung transplant at Duke in May 04. After runnning out of options and time, my husband and I moved to NC from FL to do it because I've got a really rare disease and Duke was the only place that would consider me. They are truly a remarkable transplant center. They take rare cases - ones other centers deny and the wait time is much shorter than other centers for various reasons. There are a few factors that can make your wait time longer, but I've been here for 3 1/2 years and I would say on average a person waits a month. I have friends that were called the same week and even day they were activated. I personally waited 6 weeks. The medication in the beginning is overwhelming and it is true that you trade one set of complications for others, but it is well worth it. There are others I know who've been transplanted that at one point had cancer, but I think that you have to be cancer free for one year to be a candidate. There's a website for patients at Duke that have been transplanted www.dukelungs.org. Check it out to read some stories and you can ask patients questions about their pwn journies. Here's the site for a patient that kept track of their journey. www.lungs4kyle.net
I would take the new lungs - you know the stats on both - one you may die because like you said the medicine would accelerate any cancer if it spread (wih the new lungs)- but you have not had that that much growth and you are already beating the odds with this disease. You may just be cancer free someday. If you don't take the lungs you will beat the 5 year odds but eventually it will take over - but I am betting God has another plan for you. Which is why lung transplant is an option for you. Everyone is right it is your and Christi's decision -but you asked for opinions and I love to give mine. Give it a shot - I truly believe the wrold needs Bo Johnson here a lot longer than this disease allows. When you were first diagnosed you said - I want these lungs out - BO take them out and give God a chanc eto heal you.
Bo, As you know, there have been several recent double lung transplants of individuals with Stage IV Lung Cancer, B.A.C., and as you also know, that even though the double lung transplants have been sucessful, the recipients have had to deal with the daily medical issues that go along with the lung transplants, such as a life time of taking medications, etc.
But, in view of possible quality of life, I personally don't think there is any comparsion in regards the possible benefits for you. With a double lung transplant, you have an opportunity for a sucessful transplant, with a long term survival. Unless there is a major medical breakthrough in the next six months, in regards to the treatment of B.A.C., your lungs will possibly continue to fail and your overall quality of life will decrease.
If it was me, I would go for the option of the greatest chance of sucess, which would be the double lung transplant and then place my faith in God, which you have, and in the hands of that great team of doctors and nurses at the Duke Cancer Center. With the support and love of Christi and Addi, and your families, along with a few thousand prayers from everyone who is supporting you in your herioc battle against B.A.C., you've got a lot going for you.
Bo,
I think we are a lot alike on the patience side, so were it me I would go for the transplant. You are not a stat, you are the exception. If anybody on this planet is going to make it happen whichever way you go, it is you.
Jay
Hey Bo- get on the list! I have noodled on this-there is nothing to noodle on-the transplant will take time, during that time we will all pray for the science side to make a move!
My Love to you and your family,
MitchyB
Let me first tell you, it is not a decision I would want to make. I am a cancer survivor, ALL, or Leukemia. My thoughts would be to think about your body. My question for my doctor would be, long term effect, which set of drugs are going to be harder on my body. I have personally met many people who live with anti rejection medication, and do well. The other issue I would consider is the possibility of the cancer migrating while in my body. I understand you are already beyond expectation, which is great. Now set your own expectations and prove them all wrong.
Remember, in light of cancer, we don't survive....we thrive!
J. Langston or jerry@efgagents.com
Hey Bo!
I have also given this alot of thought. At this point are the doctors just waiting for you to make a decision. Are they willing to put you on the list, or will your next scan help determine? I agree with others, I think it would be good to put your name on the list b/c of the time it MAY take for you to get the transplant, then when the time comes can you choose to go with it or not??? That would decrease the chance of the cancer spereading to other areas correct?
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