Jersey guy

[ramey2148]

High MARYFORMIKE! A lot has happened since I posted. Had to retire from work as of Aug. 1st and have been battling GVHD pretty good. But you know what I wake up everyday and make a new challenge for myself. Walk an extra block, eat an extra piece of fruit, drive to the mall, play with my son who just turned 9months and calls me dad already. He crawls already stands on his own and is the most amazing thing that has ever happened to me in my life. Never knew I could love something so much. They have me on this decogen stuff every 28 days I get it. I still see dr. Kropf at Temple Jeanes in Philadelphia. Not sure if u know my leukemia came back in sept. but is not there now. They gave me more of my donors marrow and I have been battling GVHD ever since. But as I Mtell everyone stay positive. I was just able to take my 1st plain ride in 1.5 years as my little guy plAyed with my mask the whole time. Lol oh well is what It is. Hope all is well with mike and hope to hear from you soon!
Jersey Guy,
Bob

[Mary4Mike]

Bob,
It is great to hear from you! I have wondered what is happening with you. So you had a relapse? Had they stored your donors marrow and did you have to go through the whole induction again? How are you handling the Dacogen? Mike took that and landed in the hospital 3 times because of fever and low counts. He is one of the few that I ever read on here that did not tolerate it very well. He did better on Vidaza than most do. Just goes to show you that this isn’t a cookie cutter regimen disease. Sorry to hear about the GVHD. How is it presenting – dry eyes, dry mouth, skin problems, joints? Mike is still taking the immunosuppressant Sirolimus (rapamune) but they are tapering. He has gone from 2 a day to one everyother day. So far, so good. He has eye issues and tightness in his hands. It was raising his cholesterol so I am glad he can lower his dose. He has to go in next month for a liver MRI because his ferritin isn’t coming down like they would like to see despite doing monthly phlebotomies. He feels good and doesn’t really want to be bothered with all this anymore. Oh well, it comes with the territory.

Well, it sounds as if you have got a good outlook and handle on all of this. It also sounds as if you have a VERY good reason to say positive and to have a happy heart. That little guy sounds like he is well on his way to having you wrapped around his little finger! It is good that you are testing your self physically and eating well. You have something very precious to live for.

Keep in touch with us. Keep praying (He answers!) and stay positive. So glad you wrote!

Mary

[ramey2148]

Mary glad u responded. I have to admitt there are a lot of times I am tired of dealing with it also. I do take sirulimus also but I take it everyday Im also onthat ramapune and a bunch of other stuff. Yes the leukemia did come back in sept. but they gave me some more of my donor’s cells and it’s in remission again so we will see. I go through times when I am tired of the first question being "how are you feeling" and people trying to tell u why u feel that way or if my feet are all swelled up and they ask why? Or try to tell u why. When u r sick the last thing we want is a reminder everyday that we are with question after question of our illness. We want as much normalcy in our day as possible. So from Mike’s side of the fence I am sure thats part of the " being tired of it". People don’t and couldn’t understand some of the joint pain and skin pain we have and don’t even tell anyone about because we fight to have a normal day. My Dr. Just told me at 34yrs old to retire and enjoy my family and friends. My GVHD has made my breathing bad because it attacked my lungs a little so now I take some inhahalers. Oh well I just make the best of each day and as long as the leukemia stays away i will be here forever. Lol. Just stay positive and do as many normal things as pssible
Talk to u soon
Bob

[Mary4Mike]

Bob, Yes, the well intentioned "How are you feeling?" can be difficult. I noticed that Mike, through the worst of times, always said "Great!" He said that by listing his ailments, only made him feel worse and that responding that he was doing well, actually helped to lift him up. Retiring probably took a lot of pressure off and it will enable you to enjoy your family and friends, especially that little guy.
Keep in touch and I pray you have a "normal"day!

Mary

[ramey2148]

I actually take that decogen now every 28 days. Just took my 4th dosage of it. Dr started me with 3 days of it now they wanted to move me to 5 and I said 4 is good for now. We try to stay as positive and as normal as possible but sometimes our bodies can’t do it. There are times we go through where we are just tired of being sick. Tired of talking about it tired of dr appts. Tired of people telling us how we should feel or the best is when someone tells you WHY you feel a certain way because they are just genius’ and know everything because their friend had colon cancer. I still just try to be positive, pray a little, and watch my little guy grow. I rush his growth because that means I get to see more of it. When I go to my appts in Philly I try to make everyone happy by joking with them. My Dr doesn’t understand how I do what I do on a daily day I tell her I can sit and waste the time I have or I can just enjoy it.

For everyone out there fighting this battle just do the best you can at staying positive and tell people you don’t want to talk about it if you don’t want to especially to someone who has now clue and hopefully never does.
STAY POSITIVE AND ENJOY EACH MOMENT

BOB

[John L]

Bob: You mentioned problems with your lungs. This past winter, right after I began taking cytoxin, I developed a bad cough. I had a hard time talking without coughing. I thought I had an allergy to dairy because I would start coughing after l slice of pizza. Avoiding cheese didn’t help. Then I thought it was gluten but that is hard to avoid. I went to my family doc and she said my lungs were fine but gave me some pills to consume. Then a lung doc said everything was okay and gave me some pills to take. Then the eyes,throat,etc. doc said everything was ok except some inflamation of my throat.

I then figured an allergy doc might find something. He did the arms tests and said I wasn’t allergic to anything. My problem was that the Cytoxin was killing my good bacteria and every time I would eat something, histamine would form and it would attack my lungs causing the cough. He told me to go on Pro-Biotics and to purchase them in the refrigerated section of Whole Foods–not from the bottles on the shelf in CVS, etc.

In one week my cough was gone. I now take them on a low maintenance dose if I feel a coughing problem comming on.

Get a box of pro-biotics and see if that might cure your problem.

John

[Author]

Posts