Treatment Plan

Posted By
8/1/2010 7:28pm
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Replies: 7

 I have been meaning to post, but have had a busy July with family.  I have not posted since late May, I think.  I have waited until I have news to report, so here it is!

As background, I was diagnosed in March this yearas Stage IV with lung mets, no primary identified then or since.  Tested negative for BRAFe, k, and g. Limited treatment options locally, so went to MD Anderson almost 3 weeks ago for 3 days,  My Onc there is Dr. Wen Jen Hwu.  I am extremely impressed with MDA - a large operation, but very personal and caring.  Scans showed barely measurable growth in lung mets, since they are barely measurable in the first place (.5 cm).  Dr. Hwu said the mets may not have grown at all over the 3 months since the first scan.  MRI of brain also negative.  She offered me the opportunity to enroll in the Ipi/Temador Trial at MDA, which I gratefully accepted.  She answered all my questions over about an hour about the trial, and I spent around another hour with her our first appointment.  Had a small tumor removed from my left shoulder that appeared about 8 weeks ago, but Dr. Ross left another on on my left thigh to use for measuring possible progress from treatment.

So Tuesday I will travel to Houston with my wife for two days to begin treatment.  The Ipi part is "high dose" - 10mg/kg.  The Temodar is oral chemotherapy taken over 4 days of each 3 week cycle.  The treatments are scheduled for every 3 weeks for 4 cycles, or a total of 3 months.  Scans are done at 6 and 12 weeks.  Maintainence can occur indefinitely if there is a benefit to the initial treatment, on a reduced frequency schedule.  Current research on Ipi is focused on using it in combination with other therapies that have shown effectiveness.  The idea is that there should be at least an "arithmetic" benefit to such a combination (i.e. 1+1=2) but possibly "geometric" benefit (e.g 1+1=3).  This is the purpose of this study.  High dose Ipi has more side effects than the lower dose (3mg/kg - available in the Compassionate Use Study), but also higher efficacy.  The side effects to both treatments should be manageable, but the list of possible ones is long.  I have read here today and in the past about side effects for each drug seperately, but will post again about how everything is going as we go forward.

My kids are at camp this two weeks, so no family issues with my first treatment.  My wife will be with me for the first treatment, and she has arranged family leave.  Our insurance (though her work) and her benefits are very good, so we are fortunate in that regard. I just spent time with my Mom and my sister and her family during vacation.  I emailed them a couple of weeks before that to let them know about my diagnosis.  They have taken the news pretty well, I think, and now understand that I have a good plan to fight this disease.  My wife and kids are encouraged, as am I, by my initial visit to MDA. I will need to tell friends here very soon since my hair may soon be a slightly different color (white!) and I will be a regular visitor to Houston for the forseeable future.  

So that is my story for the recent past, in a nutshell.  I am encouraged somewhat that the disease has not progressed much, if at all, since initial diagnosis in March.  Although my work with the U of Colorado over 3 months did not yield any results, the time spent there has not harmed me either. MDA will keep my Onc at CU informed by email about significant developments in treatment, and they will be my local backup if needed.

In the meantime, I apologize for not keeping in better touch with those of you who have become friends and correspondents through this Board.  You have helped me sustain a positive attitude and sense of humor about this disease, as well as helped with information.  I will write when I can, but may resort primarily to posting here, depending on my energy level this week.  Thank you all for your support, good wishes, and prayers - they have helped us more than you can know.

 

Many Thanks,

Jim in Denver

 

 

 

 

 

jim Breitfeller - (8/2/2010 - 6:03pm)

Jim, Find out if they are taking your (ALC)  Absolute Lymphocyte count. If the counts doubles from the base reading, than you most likely will be a responder.

Take care and I wish you the best.

 

Jimmy B

Melanoma Missionary

 

Jim in Denver - (8/5/2010 - 4:08pm)

Thank you for the advice, Jimmy.  I really appreciate the information you have provided to me, and I will stay in touch.

JerryfromFauq - (8/3/2010 - 1:07am)

Good to hear from you Jim.  I am in Colorado now, as we previously discussed.  We will have to work on getting together sometime in the next 4-6 weeks.  I hope to get to Denver within the next three weeks. to take the grandaughter that we brought with us to the Museum there.  She will be flying back home then, but we will be staying in the area longer.

I am also iinterested in meeting other melanoma patients in the general area.  Will  be kmostly iin the Colorado and Buena Vista areas.

    Like the sound of your treatmenat plan.and that you like Wen Jen.  In my meetings with her at  our Support Group in Northern Va and via email contact otherwise, I have found her to be a very helpful lady.  My surgical Oncologist has also enjoyed working in consults with her via long distance.

I'm me, not a statistic. Praying to not be one for years yet.

vickirs - (8/3/2010 - 3:47pm)

Jim,  i go to denver also.  i am on a trial drug ym155 and ipi as a backup plan.  is this what was offered you.  i was diagnosed in may.  i hope i do not hae to go to texas because 1 1/2 hours is enough time to travel for appts.  i didn't realize that different research hospitals have different treatment

melanoma is a word...not a sentence

ipi in DC - (8/3/2010 - 9:04pm)

Hey Jim,

I also drove down today with my wife and am starting the treatment either thursday or friday. You responded to my post a few days ago but I was away. Lets keep in touch to compare notes like you said.

Hope today went well,

David

Fully rely on GOD & try not to ruin today by worrying about tomorrow

Anonymous - (8/9/2010 - 4:21am)

Reading over your post, I noticed that you said the higher dose IPI was more effective than the lower dose. I was wondering if your onconologist actually told you that, or if you have read some literature that states this. Over the last several months, the information on this board seemed to argue that the lower dose was just as effective. Many patients here have opted for the ipi compassionate trial on the belief that the 3 mg dose can be effective.

Best of luck with this combo treatment. I am glad they have made the higher dose ipi available in this trial.

Jim in Denver - (8/9/2010 - 1:09pm)

The published research indicates that the lower dose is almost as effective as the higher dose, with fewer side effects.