<p>sunrise, damn, damn, damn. You are amazing. What an amazing opportunity you’ve been given to participate in the trial, and I have no doubt you will use your analytical skills to give the research docs incredible feedback on your experience,. I am so sorry you have to go through this, but I admire your pluck and determination to one-up this disease. How are your H and sons doing?</p>
<p>Olipond, I am 9.5 years into chronic myeloid leukemia. Have never gotten to a full remission and do daily oral chemo. I also chose not to pursue the BMT option – the mortality rate and long term complications are worse than the disease. My kids were 10 & 11 when I was diagnosed, and I had the audacity to tell my docs I wanted to see them both graduate from HS. Both are now in college, with one graduating next spring. I am humbled by my arrogance from back then. I know too many fine people who needed more time and didn’t get it. </p>
<p>I was on CML listserves for several years until I found CC, which is a healthier obsession. Drug development is progressing pretty rapidly these days as other folks attempt to replicate the success of Gleevec and other targeted chemotherapies. I keep track of those developments, but otherwise try to live my life as fully as I can. Doctors are getting more attuned to cancer as a long-term, chronic condition and starting to deal with the side effects and long-term issues we face.</p>
<p>sunriseeast, I am so disappointed to learn that the cancer has come back. I have high hopes for the trial - it sounds like just the right treatment for you. I am aware of the shortages of cancer and other medicines, and it is a horrible situation. </p>
<p>Your writing, as usual, is wonderful, and your ways of dealing with this setback, finding the positive aspects, is inspirational. I’ll be waiting eagerly for the next installment.</p>
<p>Olipond, I hope that your remission continues indefinitely. And I hope you won’t drive yourself crazy wondering what caused the cancer. There is no way to know, but there were almost certainly multiple causes.</p>
<p>CountingDown, best wishes for many, many more years in your current condition - and maybe a remission someday?</p>
<p>sunriseeast, I always look for your posts, and I am going to continue to do so! </p>
<p>Countingdown and Olipond, you also will be in my thoughts. My mother died of leukemia in 1975…the doctors then had absolutely nothing for her, and my mother chose to try an untested iimmunotherapy regimen knowing that it likely would not help her at all, but hoping that what they learned from her might then help others in the future. I am always reading about each new advance in treatment hoping the best for all others.</p>
<p>I am so sorry that intense treatments are once again necessary for you. I hope that you handle the new regimen as easily as you did the last, with long lasting successful results. How often will you have these ten hour days and will someone be with you? Thinking of you and admiring your courage and determination.</p>
<p>sunrise, will your chemo be with the same staff as the last time, or will you have to adapt to a new place & people?</p>
<p>Thanks for the good thoughts. I feel very fortunate and hope that what the docs learn from our experiences will help others from ever having to deal with this.</p>
<p>Sunrise, I am sorry to hear of your recurrence. I am inspired by the way you have chosen to view your situation.</p>
<p>I’m really glad that you have a chance to get Doxil. Excellent!</p>
<p>We know science is advancing, just hang in there… I think amazing treatments are on the horizon. </p>
<p>Don’t be afraid to ask for help. </p>
<p>I am a veteran of 8 weeks of daily travel to MSK for treatment… whenever you can, have a friend or relative travel with you. Don’t feel bad about asking someone to accompany you. It is really nice to have someone as a “buffer” between you and the world, so you can just relax and focus on getting better, as you travel and undergo treatment.</p>
<p>thank you everyone such kind words of encouragement. I am still so fortunate in many ways: a lot of women don’t have my good fortune in going through this. I am grateful.</p>
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<p>I will be treated at MSKCC since it’s their clinical trial. I will also continue to be monitored by my original doctor in NJ. Yesterday, during my consultation with him, I discussed how I should be also monitored by him for continuity. I said “Dr. S at MSKCC is a young and handsome dude, but you are my first love, so I will keep coming back to you”.</p>
<p>He laughed - laughed! This is a guy who hardly ever smiles, let alone laughs. He scares the hell out of residents, interns, and nurses. I bet I achieved something no other patient of his ever achieved. </p>
<p>I hit a home run yesterday. This is a good way to start the new round :)</p>
<p>well I popped in to see how you were doing and not happy about this news. Seeing how fast it grew, must make you realize how quickly it came about. I had a recurrence a year after my first surgery, and I did the math and realized when it probably started. I know someone with a very similar diagnosis as you and she is still here 6 years later. I think you should persist in publishing, there are many people who you give voice to their feelings in such an eloquent way.</p>
<p>Hi sunriseeast. A friend of mine also had a recent recurrence - from what you describe, it is the same type of cancer. Her drug protocol is Doxil and carboplatinum. As you say, Johnson and Johnson is longer making Doxil. She was very responsive to the drug so it is an awful shame. But, I’m very glad you have the chance to get it.
Yesterday, I wrote to the CEO of Johnson and Johnson asking him to start production again. If anyone wants to join me in writing a letter, I’m sure some of our CC friends would oblige. (hint, hint!)
I’m an RN and in fact worked at MSKCC for 13 years before I had my children. Johnson and Johnon has this wonderful PR program aimed at nurses. I told him that J and J makes me ashamed to be part of a medical industry that willingly withholds the production of life-saving drugs.
Keeping you in my thoughts for a great result!</p>
<p>I’m sorry to read of the recurrence, but very glad you will be getting the Doxil. It feels like a good sign that the door opened for you to get it. Your CC community is pulling for you.</p>
<p>Sending good thoughts your way, Sunrise. You provide a stunning example of something I have tried to embrace and convey to our children: you can’t pick everything that comes your way in life, but there are choices to be made about how to respond. I can’t imagine a more meaningful way to proceed than yours. All the best as you start the new trial.</p>
<p>sunrise, I am disappointed about the recurrence and am so impressed with both your spirit and your writing. I think that everyone who reads your posts will reflect on What is Really Important.</p>
<p>My dad had chemo all his 7 years of fighting Cancer, I can understand what you have to go thru to do your treatments. My thoughts are with you.</p>
<p>I am sure you have made financial arrangements to your assets, keep it written down clearly, including your investment objectives. When I became my mom’s POA, her stuff was so tangled that it took me almost a year to catch up without her help.</p>
Drug development is progressing pretty rapidly these days as other folks attempt to replicate the success of Gleevec and other targeted chemotherapies. I keep track of those developments, but otherwise try to live my life as fully as I can. Doctors are getting more attuned to cancer as a long-term, chronic condition and starting to deal with the side effects and long-term issues we face.</p>
You are in my thoughts.</p>