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#1
Tue Jul 9, 2013, 10:53 PM
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Message From Cam
Sorry to not have sent y'all an update in a long time. I have been in the hospital for a long time, with some of it in ICU. I am now home under hospice I have GVHD in multiple organs, I decided to come home to restart the fight on my footing. I continue to fight and have by no means have I given up.. And if you ask I would do it all again...
Cam
__________________
Cam, BMT 12/6/12 for MDS, diagnosed August 2012 beat it in December 2012 
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#3
Wed Jul 10, 2013, 01:26 AM
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Cam,
Home is the best place to get your bearings, rally your support, and start your latest recovery. Best of luck, and don't forget that we're with you.
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#4
Wed Jul 10, 2013, 03:04 AM
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Cam you are an inspiration. God has plans for you to prosper! Keep fighting the fight! You mean so much to manny of us. Do you mind me asking what GVHD your experiencing? Ill be praying for the meds to kick in and relieve your GVHD quickly!
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Heather, wife of Ronald 36; dx PNH 2012; Dx VSAA 2013; eculizumab(Solaris) hATG 2/20/13 cyclosporine 400 mg daily. 37 units RBC and 15 units of platelets. Post BMT -pentam,vorconizole,valtrex, valcyte, actigall, Pepcid , prograf, magnesium. 10/10 MUD 10/10/13 Now no PNH or AA. Mixed Chimerisim
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#5
Wed Jul 10, 2013, 09:11 AM
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We already know you're a fighter, and you're definitely not one to give up! There's something so much better about being at home, surrounded by all your things, that helps you to feel better than being stuck in a hospital! I'll keep thinking of you.
__________________
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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#6
Wed Jul 10, 2013, 10:23 AM
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We all know going into this that there are risks, but so much to gain. Get your bearings and know that so many want the absolute best for you.
__________________
Wife and mother of three young boys, diagnosed at age 39 with AA 2007; treated with ATG and cyclosporine; progressed to MDS end of 2012; MUD on June 26, 2013.
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#7
Wed Jul 10, 2013, 08:28 PM
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Cam, your fighting spirit and attitude are truly commendable.
I was getting tired of fighting, then, you popped in to give us an update and because of YOU, I have decided to have more treatment. I wish you all the best and hope that being at home gives you the extra strength you need to recover. Regards Chirley
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#8
Thu Jul 11, 2013, 09:08 AM
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Fantastic to hear from you, Cam! My husband and I have been wondering how you've been getting on. Keep fighting, mate. I am praying for you.
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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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#9
Thu Jul 11, 2013, 01:34 PM
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Cam, after my husband was dx, yours was the first journey we followed. I am so sorry you are having such a hard time but grateful you're sharing it as your information helps all of us to make our own decisions. Your determination caught our attention from the very beginning. Prayers and good wishes headed your way and please give your family a big hug from all of us!
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Liz, wife of Bob (64) dx 11/2012 RAEB II now 15% blasts rare t(1;3)(p36.3q21) Vidaza, Aranesp, Exjade
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#10
Fri Jul 12, 2013, 01:00 AM
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Quote:
MagicBob
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#11
Fri Jul 12, 2013, 01:33 PM
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Cam,
Keep fighting, we are walking side by side with you.
__________________
MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD. Neuropathy over 80% of body.
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#12
Fri Jul 12, 2013, 04:33 PM
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hi Cam,
I'm happy to see some news of you. Keep fighting, keep positive attitude. And beat this disease... Everyone here is with you. kinds regards 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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#13
Fri Jul 12, 2013, 08:46 PM
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We are all pulling for you Cam. Your courage is shining through , Good Luck , Marie
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possible low to int-1 MDS with predominant thrombocytopenia, mild anemia, dx 7/08, in watch and wait mode
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#14
Mon Jul 15, 2013, 09:50 AM
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I have been improving daily since coming home. I came home with pneumonia and Gvhd of the Liver. One Dr. said I would probably last two weeks but staying in the hospital was not helping. I am by no means giving up. One Dr. asked how I have lasted this long and I told him I was raised to keep getting up in a fight so that is what I am doing....
Cam
__________________
Cam, BMT 12/6/12 for MDS, diagnosed August 2012 beat it in December 2012
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#15
Mon Jul 15, 2013, 12:09 PM
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Cam,
You are a very brave man and an inspiration to us all. I'd like to share an inspiring story about a fellow AAMDS survivor in my support group... About 15 years ago this fellow came down with AA and received a BMT. It went well for about 5 years, then returned as both AA and MDS. Second BMT, things were rough. Terrible GvHD of both the gut and skin that went on for months. Long stays in the hospital. In the midst of this, he came down with a brain infection. The doctors thought it highly unlikely he'd pull through and said so. But slowly, after about 10 months things started improving, at 18 months he had enough energy to go back to work. He felt exhausted though for about another 18 months. At the 3 year mark, he started feeling his old self again. Since then, he's been going strong for about 9 years now, he has his old life back. He's the head emergency room physician now at a hospital up in the Colorado Rockies, where he works 12 hour shifts, and enjoys time with his family on his off hours in their two homes (one in the mountains, one in town). This past winter, he skied a 30 mile cross-country ski race. So it is fair to say he has his energy back, and is very productive. So, as you very well know already, there is hope. Keep fighting man!!!
__________________
Kevin, male age 45; dx SAA 02/2012 - Hgb 5.8, platelets 14, ANC 200, 1% cellularity. Received ATG 03/2012. As of 03/2015, significant improvement - Hgb 15, platelets 158, ANC fluctuates around 1000, Lymphocytes 620. Tapering cyclosporine. BMB 20-30% cellularity.
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#16
Mon Jul 15, 2013, 11:43 PM
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All the best to you and your family, Cam. Keep fighting!!
__________________
Sharnie, 37yo, dx Mar 2012 RAEB II 13% blasts. 8 months of Vidaza. Transformed to AML in Nov 2012, induction chemo, no remission. 2nd lot of chemo, remission achieved. SCT with 8/10 match, Mar 2013.
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#17
Sun Jul 21, 2013, 04:28 PM
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We were told that Cam passed away on July 20, 2013.
His inspirational struggle against MDS and GVHD showed us all how a hero stays positive and never gives up, no matter what the challenge. Our sympathies to everyone who was close to him.
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#18
Sun Jul 21, 2013, 07:35 PM
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My heart goes out to Cam and his family. He was such a brave inspirational man.
I have experienced first hand the grief that this insidious disease MDS can wreak. For those of you heading for transplant or in the very early stages, please remember there are also many positive stories of successful transplants. I feel certain that both Paul and Cam would head to transplant again. It is human nature to grasp at a chance to beat this disease.
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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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#19
Sun Jul 21, 2013, 07:57 PM
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Cam
You were a brave warrior. God bless you, your family and loved ones!
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Scott 51 yr SAA 3/2012. PTL 7, ANC 200. ATG finished 4/9/2012. 2/4/2013. TX independent:; PTL 133, ANC 3300, Hgb 13.4.
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#20
Mon Jul 22, 2013, 02:45 PM
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I don't visit the forums much and was shocked and sadded by the news of Cam's passing. Condolences to family and friends.
__________________
Karen, age 62, dx MDS RAEB-2 1/8/10: pancytopenia WBC 2.7k/Hgb 7.4/Hct 22.1/Plt 19k; complex cytogenetics -3,del(5)(q14q33),-6,+8,+mar,17% blasts. MUD BMT Johns Hopkins 11/30/10. Dx tongue cancer 8/31/12. ok now. blog mausmarrow.com
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#21
Tue Jul 23, 2013, 02:10 AM
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Heartbreaking.
Cam although I didn't know you outside of the forum, following the posts is like a good book or movie. You care for people you don't know. Except this is real life. Cam was such an amazing blessing. I think manny of us on the forum will miss him. I look forward to the day success stories are ubiquitous. I am so sorry to all of the family and friends of Cam.
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Heather, wife of Ronald 36; dx PNH 2012; Dx VSAA 2013; eculizumab(Solaris) hATG 2/20/13 cyclosporine 400 mg daily. 37 units RBC and 15 units of platelets. Post BMT -pentam,vorconizole,valtrex, valcyte, actigall, Pepcid , prograf, magnesium. 10/10 MUD 10/10/13 Now no PNH or AA. Mixed Chimerisim
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#22
Tue Jul 23, 2013, 02:25 AM
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A true hero
My deepest sympathies to Cam's family. May you experience God's comfort at this very sad time.
Cam was such an encouragement with his positive attitude right up until his last post a week or so ago. His passing deeply affects all of us who have followed his progress on Marrowforums.
__________________
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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#23
Tue Jul 23, 2013, 01:14 PM
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I've only just seen this message, and I'm so saddened to hear of his death. He was an inspirational figure to many here, and his positivity will continue to shine on. He'll be another name I remember when I next run, and he'll live on in my memory alongside Rob, Vera, and David for me.
__________________
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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#24
Tue Jul 23, 2013, 01:54 PM
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I have to believe that with each transplant, whatever the outcome, a bit more knowledge is gained, allowing future transplants to be more successful. I recall reading that 40 years ago BMT survival was something like 5-10%.
So for the brave warriors like Cam who go for a transplant knowing the risks, even if they loose their battle, they have not died in vain. Just like the donors, they too are heroes.
__________________
Kevin, male age 45; dx SAA 02/2012 - Hgb 5.8, platelets 14, ANC 200, 1% cellularity. Received ATG 03/2012. As of 03/2015, significant improvement - Hgb 15, platelets 158, ANC fluctuates around 1000, Lymphocytes 620. Tapering cyclosporine. BMB 20-30% cellularity.
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#25
Thu Jul 25, 2013, 10:00 PM
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Your recovery
Cam, I am scheduled for my SCT on September 11th. I have been fighting B Cell Lymphoma and MDS for 3 years now. Actually September 11th is the anniversary of my first getting sick. I will not give up no matter what. You can;t either. You sound like me, if I have to fight this is will do it on my own terms as practical. Being home is a good thing. Good Luck to you and lots of prayers your way.
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