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So happy for you. I hope you have continued success with the trial.
Great post. You are relentless in your desire to provide valuable information to all persons associated with this site and with this disease.
I am glad i have gotten to know you through our messages. I am thankful yo you for all you do to help this cause.
Take care my friend,
Great post Marion.
We definitely need more attention paid to this disease. I know you are the best advocate we could hope for.
Congratulations on your one year success with this trial drug. I hope you find continued success and that you can keep the side effects under control.
It turns out we did not have to stay after taking the pill today. Blood work with the pill and then we could leave. Sorry we missed you.
We will continue on the trial for at least 2 more cycles – for Lynn, that means 6 weeks as each cycle for her part of the trial (part D) is only three weeks v. four weeks for the original part you are on. We are actually glad we will only have to wait 6 weeks for a new scan to assess whether the pill is working for Lynn. Since she had the allergic reaction to cisplatin, she is no longer doing chemo (the purpose of this part D). She is able to stay on the trial with just the pill, but it’s at a lower dosage and the sponsor won’t change the dose fort part D patients. So while the scan today showed ‘stable’ results, we have not gone a complete cycle with only using the pill. We have learned twice now that Lynn’s cancer is very aggressive and grows rapidly without treatment. Dr Denlinger will not wait long to get Lynn off the trial if this lower dosage is proving ineffective.
In addition to the good news of a stable CT scan, the fact that Lynn will be off chemo for 6 weeks is quite nice. It will be the longest time period of no chemo since we began this journey a year ago.
Take care. We will see you soon.
Thanks for your kind words my friend.
It’s a deal. Now let’s go Cubs.
Would you be up for going to a Cubs game ?
I will pick you up and get you there and back home. I don’t care who they are playing. I’ve never been inside the stadium. I would love to watch a day game at Wrigley.
Take care my friend,
I know as soon as I write this I will be putting myself up for more scrutiny, which has happened before.
I cringe when anyone talks about adding calories by absorbing mostly sugar. If there is one thing I have learned is the processed sugars we eat as a routine do nothing to help and can cause our systems to work harder to eliminate them.
Note: I am not directly referring sugar helps cancer grow. Just that sugar adds no value and causes our body to put more effort into getting rid of it.
For anyone who believes in the “nutrition” theory, I hope you understand that what I am truly saying is “Please” find a way to get those calories without needing a piece of cake. Try nuts, grains, fruits, smoothies, juicers, almond milk, etc., etc. etc.
A piece of cake, now and then, is a “treat”. But as a standard diet, it has been shown to cause your body – and in most CCF cases, your liver – to work harder to get rid of the sugars.
I know this post will cause others to be upset with me. Sorry in advance, if I upset you.
Just wanted to let you know we are thinking of you and are hoping for continued improvement. It’s been a tough road.
Stay strong Percy. You are a fighter. It is clear in all that you have done for your own situation as well as for all that you have done to help others.
Take some time to rest. Watch those Cubs on TV (like last week when they beat my Phillies) and enjoy some quiet time.
Post when you want but don’t worry about anything you might state. We always learn something new each time you send out a message.
Warmth is coming to Chicago.
Have you considered chemo-embolization as an alternative to the radioembolization? It is also a liver directed treatment. Johns Hopkins has had good success with this treatment. In fact, before we started on the clinical trial Marion mentioned above, we almost went this path ourselves.
In Lynn’s case, the trial still seemed to have more potential benefit with the inhibitor drug. But we both felt very confident in Johns Hopkins and their work in chemoembolization.
We evaluated both radio and chemo embolization. The doctors at Johns Hopkins were quite confident about tumor reduction with chemoembolization.
I don’t know if you have worked with Johns Hopkins. Based on your location, its possible you may already have been involved with this organization. We came away highly impressed.
Ask your doctor about adding steroids to your treatment plan. It really helps with fatigue. My wife was not on irinotecan. She was on Gem/cis and after cycle 5, she was getting more nauseous and more fatigued. The doctor switched her to Emend for the nausea and introduced a steroid during the infusion days. The combination helped her get through 3 more cycles with much less difficulty.
Thanks for the update Kris. Glad to hear the scan was good. Hopefully you start feeling better quickly.
Thanks Kris and Marion,
We are excited and hopeful about this trial.
It was such a pleasure meeting Kris in person yesterday. We talked about the trial. And we all agreed what a terrific oncologist we have in Dr. Denlinger.
We also had an enjoyable discussion regarding multiple non-ICC topics. We especially liked when Kris described how she got involved with karaoke and how she has gone from knowing one song to being a top entrant in karaoke competitions. Way to go Kris.
Thanks Kris for taking the time to stop by and meet with Lynn and I. We look forward to seeing you again very soon.
What a depressing article. They really did a good job of taking away hope. Shame on you ASCO.
Great response Willow. Facebook and other social media sites have already shown us that there is very little “private” information on public sites. Your point about creating a pseudonym is right on the mark.