tag:blogger.com,1999:blog-19584475.post2611929013422682701..comments2023-08-27T09:42:54.706-05:00Comments on John's Chronic Lymphocytic Leukemia (CLL) Journey: My MD Anderson Appointment - Medical UpdateJohn Wagnerhttp://www.blogger.com/profile/17473272053117617993noreply@blogger.comBlogger6125tag:blogger.com,1999:blog-19584475.post-60486002971647166562009-08-09T21:05:18.782-05:002009-08-09T21:05:18.782-05:00I am always praying for you John, and for Cheryl a...I am always praying for you John, and for Cheryl and your whole family. You are a light of God's love and hope and provision. Thank you for your obedience to Him in sharing with us so candidly!annhttps://www.blogger.com/profile/12375116533280339965noreply@blogger.comtag:blogger.com,1999:blog-19584475.post-65533958819146716962009-07-30T15:12:51.853-05:002009-07-30T15:12:51.853-05:00Dear Anonymous,
I never did say that 'now is a...Dear Anonymous,<br />I never did say that 'now is an exciting time for CLL' or at least I can't find where I said it. I can't think of a context where I would ever call CLL exciting, including new treatment options. I think Dr. Wierda was probably referring to new clinical trials when he made the comment about upcoming options. And you are absolutely correct; waiting too long can have dire consequences. Unfortunately there is no magic formula. I am a conservative type and I think that once I fulfill all the established indications for treatment I would go for it as I did last time. The problem for me is deciding which treatment. My specialist and my local doc were not happy with my choice last time, but both have conceded that I have done much better than they ever imagined. I did know one fellow on the CLL forum who kept trying to decide which treatment and agonized over it until it was way too late. When he finally decided he had to do something, he was end stage and nothing worked.<br /><br />Shari, <br />I certainly can understand where you and John are with this disease. I do not present that strongly in the blood and mine resides mostly in the lymph nodes. My nodes have been up for several years now since treatment. Deciding what and when is very difficult. It takes listening to experts, prayer and then arriving at a decision and having peace with it and not looking back. It is tough.John Wagnerhttps://www.blogger.com/profile/17473272053117617993noreply@blogger.comtag:blogger.com,1999:blog-19584475.post-19400927110848496882009-07-30T08:03:21.141-05:002009-07-30T08:03:21.141-05:00I think the treatment decisions are one of the har...I think the treatment decisions are one of the hardest parts of this disease. My John was diagnosed in June of 2007. His lymph nodes have been his only real issue, but they have always been an issue. With an occasional long acting steroid shot, he can get relief for up to a couple of months. And then they start coming back, getting large in various areas. At his next appointment in August, we will discuss chemotherapy. I hate to make that decision. I got excited when I read that the doctor wanted to wait because there are so many other options right around the corner. Then I felt deflated when I read the comment about waiting too long. You can never have certainty about any decision with CLL. I'm so glad you get to put off any decisions for another six months, John.Sharihttps://www.blogger.com/profile/01930041548159037405noreply@blogger.comtag:blogger.com,1999:blog-19584475.post-50279258222359590742009-07-24T22:44:19.854-05:002009-07-24T22:44:19.854-05:00Congrats on your situation.
I will say that the t...Congrats on your situation.<br /><br />I will say that the thought that 'now is an exciting time for CLL', and 'new things are right around the corner' are really red herrings, in my opinion. It takes years for new drugs to be approved by the FDA, and even clinical trials take so long, and can be delayed and delayed.<br /><br />My opinion now is that my treatment in 2006 came too late, so that I developed the 11q deletion. The delay was caused by me waiting and waiting and waiting for a clinical trial to open. It was a good clinical trial (HDMP+rituximab) but it took a year (!) to get open. My doc recommended treatment before then, but also recommended this trial.<br /><br />In retrospect, I should have not waited for the trial; I should have just used the usual dose of HDMP+R. I know several people using that regime who are still in remission many years later.<br /><br />Developing 11q and/or 17p deletions are 'ominous' developments, and can come from waiting too long. CLL has a notoriously unstable genome; waiting with large numbers of cells increases the likelihood of further damage and more refractory disease.<br /><br />It is good to know more drugs are coming, but the time frame is longer than 'just around the corner'. Besides, I've been hearing from reputable people that same refrain for a decade. Still no cure...Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-19584475.post-21426879323009670732009-07-21T06:39:45.396-05:002009-07-21T06:39:45.396-05:00Good news, John, you should be relieved. I bet you...Good news, John, you should be relieved. I bet you went out and celebrated afterwards! I hope you did. Three years without chemotherapy and why not another 3 and another 3 after that?Celeste Maiahttps://www.blogger.com/profile/08683512170853367791noreply@blogger.comtag:blogger.com,1999:blog-19584475.post-2706980892874371232009-07-19T15:16:31.479-05:002009-07-19T15:16:31.479-05:00Congratulations, Johm. I think your latest visit t...Congratulations, Johm. I think your latest visit to MDA proves what many of us also find -- that assumptions made at the outset about length of remission and so forth may be incorrect, that things take their own course, and that the results can be different than expected. Glad your results are of the GOOD different variety!David Arensonhttps://www.blogger.com/profile/13876562687586184006noreply@blogger.com