FRANTIC Member Posts: 106
edited March 2014 in Colorectal Cancer #1
Hello everyone. I haven't written in a while but have been reading the message board frequently. I think of all of you throughout my day and think how courageous everybody is to fight this disease.
I commend you all for the encouragement you have given me. When I was dx. with this cancer in Aug.2003 and complications afterwards I felt I was given very light chemo in comparison to what I have read. I feel the physicain at the time felt to do that regime first. Two week on and 1 week off, 1 day a week of CPT11,lecovorin and a
shot of 5Fu. THis regime is nothing compared to the agressive treatment that I have read. Since July 2004 my bone marrow has not been making red blood cells. Its the same old story with me. I have had 3 bone marrow biopsies since Aug.2004. Two of which were in the hip bone which showed no making of red blood cells. I just recently in Jan.2005 had a bone marrow biopsy of the sternum which showed alot of red blood cell makers however my hemoglobin consistently goes down every week where I have to get red cell blood tranfusions. I was already sent to Slaon Kettering in back in Nov. 2004, where the hematoligist had no answers. My DR. as of FRiday out here on LOng Island who is a well respected hematolgist/oncoligist is quite baffled by the whole thing. He was very optimistic from the last bone marrow biopsy that the bone marrow would recover. It was very controversy if the cause was from radiation to the pelvis as the other cells were not effected. He now wants me to go back to as these cases are unheard of here out on Long Island. I am beside myself. Not only that I have been having persistant feeling of pins and needles in the butt area and legs. I just had another MRI of the lumbar spine to rule out mets. I am scared to the death. Although the cea level has been consistent with 0.5 I still have my doubts. On the good side I decided to go to Florida for 5 days with my sister to visit my niece. The Dr. said it was okay. I have to get out of here and not think about this stuff. I think of you all everyday and will keep you updated. I am due for another petscan but am going to wait as this blood disorder problem has to come first. Your friend Fran


  • jsabol
    jsabol Member Posts: 1,145 Member
    Hi Fran,
    Reading your post takes me back to my chemo, when I developed very dangerously low potassium levels despite mega doses of potassium replacement, accompanied by dangerously high blood pressure (210/110) that was not responding to any multiple med changes. Had my docs stumped. FINALLY diagnosed by another specialist as a wierd problem with one of the chemicals produced by my adrenal glands, and cured by an old and cheap blood pressure med. No one can say whether this is a separate condition that I developed (I had some rare, unexplained drops in potassium before cancer) or if it was caused by or aggrevated by the chemo. I had some very panicky moments with it, but its now completely under control.
    Hope your situation resolves positively for you, too.
    For what it's worth, I also had "light" chemo, 5FU and leuco for stage III, one positive node, 1 small primary colon site. I'm just over 1 year post surgery, and no evidence of disease.
    Hang in there and have a GREAT time in Florida; you deserve a break! Judy
  • rejoyous
    rejoyous Member Posts: 259
    Hi Fran,

    I don't have any insight on your red blood cell situation, but I did want to wish you well on your vacation. I hope you have a wonderful time in Florida and just let your body rest and recover. It sounds great to get away from the doctor visits and constant what-ifs. My experience with this crazy cancer business is that the mind is absolutely as important as the body in giving me a feeling of well-being. Have a ball!
  • steved
    steved Member Posts: 834 Member
    This is not Panic but a normal reaction to a frustrating and uncertain position that you are in. It is so hard when we are unable to know what is causing our problems and even the specialist are unable to reassure us as they too are baffled. Your preoccupation wiht this is normal and is somehting that is likely to be with you until you either improve or get wome explanaitons as to why this is happening. Living with uncertainty is something we all have to do and is one of the hardest aspects of this illness. We all have differing ways to cope with it- hide from it, deny it, face it full and deal with it, worry about it etc. You need to find your own way that allows you to get on with your life despite this on going uncertainty. Certainly heading of on holiday seems like a good start- any sense of normality that you can bring to your life will help. For me it was getting back to the old routine of going to work, coming home playing with son, having dinner, watching tele and going to bed taht helped me put aside my anxious preoccupations with this illness. try to find things taht give you a sense of normality and distract youfrom the cancer- it is an illness, not a way of life and should not be allowed to dominate every thing we do.
    Your ongoing fight with this demonstrates a remarkable strength and your ability to carry on despite all your problems is inspiring to us all, Keep up the great work and let us know how things go,
  • Kanort
    Kanort Member Posts: 1,272 Member
    Hi Fran,

    It's good to hear from you and hope that your vacation will be relaxing and enjoyable. Spending time with loved ones can be very healing.

    It amazes me as to the different treatment options offered each of us. Even though our ages and stages vary, many times those of us with similar situations will be given vastly different treatment.

    I hope that your blood cell situation either resolves itself or is something simple like Judy's.

    Enjoy your family and let us hear from you when you get back.