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#1
Sun Apr 28, 2013, 10:21 PM
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Update.
Well it seems I made it through the first 100 days and did well. I then got the BK virus, then GVHD of the stomach. My last admittance to the hospital for MRSA (from my power line)/GVHD. Over the course of four days I went from a strong able bodied person to having to be lifted by my father into a wheel chair. And by the time I was admitted I could not walk and my right hand would not open. 13 days in the hospital later I have no muscle mass in my legs all my imune suppresion meds have been changed and I am home again slowly climbing back. The fight is not over but I am ready to start getting off all these meds. I often wonder sometimes if the meds are just as toxic as the disease.. I know I need them I am just ready for this journey to be over. I have now spent a total of 48 days in the hospital and I do not want to go back...
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Cam, BMT 12/6/12 for MDS, diagnosed August 2012 beat it in December 2012 
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#2
Mon Apr 29, 2013, 03:06 AM
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Cam,
Thanks for bringing us up to date. I'm sorry your news wasn't better but I'm glad you are home. You're right about the toxicity of these drugs. It's like fighting poison with poison. We've been worried about you. See this thread and this post.
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#3
Mon Apr 29, 2013, 07:39 AM
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Sorry you have been having such a miserable time, Cam, just when it looked as though you were doing really well. I do hope the GVHD will give you a break now! You are in many forum members thoughts and prayers.
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
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#5
Mon Apr 29, 2013, 04:10 PM
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hello cam, I'm so happy to see you again here :-).... I wish you and your family beter time now.... fight up this stupid disease... béné
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boyfriend with RARS-T dx 11/02//dx : hb 11,5; plt 870000, wh : 6500//Before fasting cure (13/04): hb: 8,9; plt 2200000; white:6000//After fasting cure (14/09): hb 12,5; platelets 400000, wh 3000.//Now (15/08) : hb : 11,plt : 650000, wh 3000// hydrea 1c/day and cardioaspirin, 1c/day,age: 56 y.
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#6
Mon Apr 29, 2013, 10:07 PM
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Now that I am home again I have regained the will to fight. My wife was really scared because my last bout in the hospital I was not able to keep a positive attitude the whole time. My loss of mobility really got to me.. But I am home and back at it. I am off the ropes and swinging at this with all my might. I will win this fight, as my doctor's told me today. Keep the faith and keep fighting to win. I asked them if I had any other choice... So everyone out there just remember no matter what. What is your option it wins or you do. I choose to win this one... On a positive note I have facial hair again and my hair is growing back.. Keep the faith and if you get knocked down get up again and again... And I really appreciated sending me that post it made me feel really good.
Cam
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Cam, BMT 12/6/12 for MDS, diagnosed August 2012 beat it in December 2012
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#7
Tue Apr 30, 2013, 04:21 PM
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Cam-
I have been following your posts - and I am amazed at your strength. Honestly, I have goose bumps. I'm so glad you decided to fight this with all you have - I'm sitting here trying to find those magic words to make it all better - only if were that easy..huh? Best of luck to you - keep us updated.
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Kathy, wife of Dennis (58 yrs old) diagnosed October 2012 w/MDS; bone marrow biopsy confirmed significant fibrosis;blast cells of 5%-10% of total cells, high risk refractory anemia w/ excess blasts (RAEB1); 3 cytogenetic markers; +1, -7, and +21 http://www.caringbridge.org/visit/dennismolyneaux
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#8
Sun May 5, 2013, 10:07 PM
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2 weeks out of the hospital and I am getting my strength back. My legs are about a third of what they are and my stamina approves every day. I went up add down the stores 4 times today. I will be back and I found out last Dr. visit they told me they wanted to start cutting back my meds. I am so ready for that....
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Cam, BMT 12/6/12 for MDS, diagnosed August 2012 beat it in December 2012
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#9
Sun May 5, 2013, 11:43 PM
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It's great to hear your progress Cam. Your positive attitude is really an uplift. Keep up the fighting spirit and I look forward to hearing more of your improvement.
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Sandi, partner of Paul 62, diagnosed MDS Intermediate 2; July 2012. Pancytopenia, Cytogenetics -7 +8 Chromosomes. Low Blast cell count. Currently on EPO & G-CSF and having great response. MUD found will be admitted to Royal Perth Hospital 27 March 2013 to start SCT process.
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#10
Mon May 6, 2013, 09:42 PM
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Well done, Cam! So good to hear that you are improving. Again - you are an inspiration to all of us.
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
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#11
Sun May 12, 2013, 05:18 PM
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Cam you are in good hands. Rick went from taking 58 tablets a day in the beginning down to 15. Yes the meds are necessary. Does he always take them absolutely! Compliance is the key to the future. So keep on fighting, walking, use a stretch band and lift some light weights. You will get your muscles back. You just need to use them. Stay positive. Rick's favorite saying: Life's an Adventure...so let's go live it!
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Kris, wife of Rick. DX; MDS/ Ringed Siderblast 5/2006. Supportive care, then Vidaza x 25 mo. HSCT 11//1/11 doing GREAT!
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#12
Sun May 12, 2013, 09:27 PM
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Is funny I heard a song today I have had on my Ipod for a while. It says if your going through hell keep on going. I looked at my wife and said what option do you have? We both laughed and said none.... So I guess that is another theme song to add to my list. LOL And believe me I will take all my meds and I am very compliant with Dr.s orders...
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Cam, BMT 12/6/12 for MDS, diagnosed August 2012 beat it in December 2012
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#13
Mon May 13, 2013, 07:35 AM
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Oh I'm so glad you're doing better Cam. Just keep pushing through it all, towards the hope and health at the end. There will always be setbacks, but you just get better at dealing with them!
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36/F - 1984 SAA treated with ATG [complete remission until] Oct 08 - burst blood vessels in eyes and low platelets; Jan 09 - AA & hypo-MDS; July 09 - BMT (RIC MUD PSCT) July 10 - 10k for Anthony Nolan (1yr post BMT! 53:48) Sep 10 - Wedding!  I've run 5 marathons now!! (PB 3:30!)
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