Monday, September 17, 2012

Different direction

I have been a bit negligent or maybe lazy about doing this blog entry... sorry!  Several of you have asked specifically about the information I am going to be telling you about.

We have always felt that God led us to CTCA for cancer treatment, and we still do feel that way.  We have had very good treatment there - both medically and emotionally.  They have been there for us and have provided what we feel is very good care.  Arnie has done very well and at this point, Dr. Neelam has suggested the possibility of investigating clinical trials.  There are new drugs always coming out and there is a lot of research going on.  Because Arnie is doing so well at this point (cancer is stable) it may be a good time to get involved in a clinical trial, but it has to be the RIGHT one.  If we can take advantage of a treatment that knocks the cancer completely out during a clinical trial, we are ahead because it takes the FDA a significant period of time to approve drugs and to have them available.

Arnie has been looking into what is available in our area, since we are not going to travel outside the country or any further than we have been traveling for treatment.  We found that IHA Hematology Oncology,  Cancer Care Center-St. Joseph's at Ann Arbor, Michigan does clinical trials and they treat patients there.  We have visited them and established ourselves as a patient.  Their patients are given preferred consideration when it comes to consideration for clinical trials.  We met with Dr. Chris Reynolds, who had all the records that CTCA had forwarded to them along with the copy of the latest PET scan which we had for him.  He reviewed Arnie's case with us and looked at the scan.  He seemed encouraging because he commented that the cancer was small and localized.

We talked about the trial that they are recruiting for right now and after gathering all the information and talking at great length about it, decided not to go with it, mainly because only 2/3 of the participants will be receiving the drug, while the other 1/3 will not and no one will know for at least 2 months, when scans are run, who is getting the drug and who is not.  We checked with Dr. Neelam who said she did not like that idea at this time.  She felt that waiting all that time without a treatment was not an acceptable chance to take.

Dr. Reynolds commented that he saw no reason to change treatments at this time, since the present one seems to have stabilized the cancer.  He told us that they could proceed with our present treatment of Xeloda and Avistan, which we have been receiving at CTCA. 

We will be taking at least the next 2 Avistan treatments in Ann Arbor, MI instead of traveling to Zion.

All of our team at CTCA have been agreeable to what we are doing and they want us to be sure to keep them in the loop.  The idea of traveling one hour as opposed to a 5 hour drive and a night's stay, is very appealing to us!

Arnie is doing well on this "mini break".  We have gotten some things done around the house that have been put off.

We feel that this is where we need to be right now.  Our prayers have been for God's leading and that we would know for sure where He want us to be.  We feel that taking the treatments right now in Ann Arbor is where we are to be.    Please keep us in your prayers for healing and also for us to be sensitive to His leading. 

5 comments:

  1. Expresses my feelings exactly. Thanks to everyone for the prayers and concern!

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  2. I feel that you are making good choices. Please know that you have all or our love, prayers, and support as you travel the paths that this journey takes you. We love you both!!

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  3. Your prayers & thoughts are with me always & praise the Lord for all he has done for y-all & He is so awesome God . And I can't even imagine going through the days without God's help & knowing I can always trust Him to do as He said he can do. God Bless Honey lou

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  4. Hi Sharon,
    Well at least it sounds like the cancer is stable, which is always a blessing. Trials are always a scary thing to me. As you mentioned you never know sometimes for months of whats going on. I also felt the same way about CTCA. I really loved going there until my insurance changed. But I also remember many times, that the car rides did get old. I can say that since I get my treatments local that it does make life a whole lot easier. I also found out with my cancer, which most are probably the same. That there is a certain protocol to treat the cancer and only a limited number of options that are available to doctors. So, no matter where you go whether it be far or near I feel you will get the relatively the same treatment. I wish you both well in this terrible journey that we must travel for reasons that are unknown to us. My prayers go out to you both.

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    1. Thank you Dave. I hope things are going well for you. I read your entries on the CTCA page. They want us to keep them informed as we go forward. Like Arnie says... we have increased the number of members on our team!! Hang in there! One day at a time! There is no other way to do it... God gives us one day at a time and we just trust in Him and go on. Maybe we could actually meet some day!! You live in Point Place?

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