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Cancer Support

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slipslidingaway

(21,210 posts)
Wed Jan 4, 2012, 12:28 AM Jan 2012

What a roller coast ride this has been ... [View all]

my husband was diagnosed with MDS RAEB 2 in May 2010, started one of the prescribed drugs (Dacogen) unfortunately that did not slow the progression to acute myeloid leukemia. He then had induction chemo and a bone marrow transplant from his sister (in reality a stem cell transplant, T cell depleted) in October 2010 and has been doing well. No real GVHD, but complications from a reactivation of the Epstein Barr virus and subsequent treatments with Rituximab for EBV Lymphoma have played havoc with his WBC. We're still waiting for certain levels to return to a level where he can begin to receive the childhood vaccinatons, all wiped out with his immune system prior to transplant and then with the Rituximab.

So we wait and continue to watch the counts. Fingers crossed for the blood tests done today at Sloan, hoping they call in the next day or two for some vaccinations next week

We have several new friends from the time we spent at the ACS Hope Lodge in NYC (required for to be close to to the hospital for 100 days post transplant) what a blessing it was to have that available, and we are thankful we had an insurance policy which allowed treatment from one of the premier cancer centers. We met others who did not have such access

With AML and a bone marrow transplant there is not much time to shop around for the "best" transplant center as time is of the essence, we chose to stay closer to home because that is where we began ... and there was not much time to search for "the best." We spoke with the NIH as well, but as the doc at Fred Hutchinson in Seattle said in a phone consultation, Sloan Kettering is not "chopped liver" and the window of time might trump the medical facility and approach. So you go with the flow and are swept with the tide.

We're looking to sell our home, those out of the pocket annual maximums really hurt, stopped any renovations to get ready for the sale as the doc said that was one of the last things a bone marrow transplant could be around. Fortunately we have a family member that stepped up to the plate to help with financial matters, they live in a country with socialized medicine, and they said the most important thing is to focus on getting better, not medical bills. What a novel concept!

A short intro of where we have been and wishing all those on this roller coaster a good outcome. My Mom had cancer and I've had cancer as well, not a roller coaster that we choose, but we are on this ride together.

A Healthy New Year to All, takes on a whole new meaning when you have been there.

Step by step






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What cool relatives you have jumptheshadow Jan 2012 #1
Thanks so much and yes we are lucky to have relatives ... slipslidingaway Jan 2012 #3
thank your relatives for me for showing the meaning of family wordpix Jan 2014 #40
Sorry for the late reply, you just never know how people will react ... slipslidingaway Jan 2014 #41
A roller coaster it is! cmd Jan 2012 #2
Yes they do and the new friends are a great support system ... slipslidingaway Jan 2012 #4
That is the one and only thing I'm looking forward to tavalon Jul 2012 #16
Sorry as I missed your other replies until now ... slipslidingaway Jul 2012 #20
We could all use a bit of humor, if only just a bit ... slipslidingaway Jan 2012 #5
In a just world ruled by me, the benevolent dictator, tavalon Jul 2012 #18
Sorry this is happening ... slipslidingaway Jul 2012 #21
Well those numbers did not work out as we had hoped ... slipslidingaway Jan 2012 #6
The second antibiotic seemed to do the trick... slipslidingaway Mar 2012 #7
Any news? Irishonly Mar 2012 #8
Thanks :) 18 month bone marrow biopsy on Monday so a little nervous .... slipslidingaway Mar 2012 #9
CBC numbers were good today ... slipslidingaway Apr 2012 #10
Great news about CBC numbers Irishonly Apr 2012 #11
Much appreciated ... slipslidingaway Apr 2012 #12
A short update ... slipslidingaway Jun 2012 #13
Must be trippy to read the literature Irishonly Jun 2012 #14
Yes it was ... slipslidingaway Jun 2012 #15
Wow, so with stem cell transplant, tavalon Jul 2012 #17
Yes, in some ways he is less than two ... slipslidingaway Jul 2012 #19
Round three ... slipslidingaway Aug 2012 #22
23 months ... slipslidingaway Sep 2012 #23
Cheering for normal blood counts Irishonly Sep 2012 #24
Thanks :) ... slipslidingaway Sep 2012 #25
Hoping the best Helen Reddy Sep 2012 #26
Thank you ... slipslidingaway Nov 2012 #28
Best wishes to you and your husband Tab Sep 2012 #27
Good thoughts are always welcome ... slipslidingaway Nov 2012 #29
Good for the bone marrow results Irishonly Nov 2012 #30
Thanks and you are so right about cancer changing our outlook ... slipslidingaway Nov 2012 #31
A little virus can surely wreak havoc ... slipslidingaway Apr 2013 #32
First flights ... slipslidingaway Aug 2013 #33
Happy to hear it! cate94 Aug 2013 #34
Thank you ... slipslidingaway Aug 2013 #35
We attended our third annual transplant celebration in October ... slipslidingaway Nov 2013 #36
Hoping ... slipslidingaway Nov 2013 #37
Keep with it Tab Dec 2013 #38
Will do and thank you Tab ... slipslidingaway Dec 2013 #39
A bit nervous, but that always happens when something out of the norm ... slipslidingaway Sep 2014 #42
A hard decision I am sure. cate94 Sep 2014 #43
Thanks cate94 ... slipslidingaway Sep 2014 #44
Fourth year check up not so good ... slipslidingaway Oct 2014 #45
Sorry to hear that Tab Oct 2014 #46
Thanks Tab ... slipslidingaway Oct 2014 #47
Huh Tab Oct 2014 #48
Sorry Tab ... slipslidingaway Oct 2014 #49
I wish you both the best Tab Oct 2014 #50
Thanks Tab ... slipslidingaway Oct 2014 #51
Sorry I missed this earlier cate94 Nov 2014 #52
Thanks ... slipslidingaway Nov 2014 #53
Sometimes it is hard to tell if anxiety cate94 Nov 2014 #54
Hello Cate, you are so right about the nervousness being a habit or ... slipslidingaway Nov 2014 #56
how did I not see this? onethatcares Nov 2014 #55
Home, a few days shy of a month ... slipslidingaway Nov 2014 #57
Just catching up on your news KaryninMiami Nov 2014 #58
Thank you ... slipslidingaway Nov 2014 #59
One day at a time KaryninMiami Nov 2014 #60
Tomorrow is a new day ... slipslidingaway Dec 2014 #61
Induction chemo and subsequent BMB shows that we can proceed to a second transplant ... slipslidingaway Dec 2014 #62
Plan in place ... slipslidingaway Dec 2014 #63
And a new beginning to the year KaryninMiami Dec 2014 #64
Thanks so much for the toast to a new life for a new year ... slipslidingaway Dec 2014 #66
Hope all is well Tab Dec 2014 #65
Thanks Tab ... slipslidingaway Dec 2014 #67
jeez slip, I missed this somehow (again) onethatcares Dec 2014 #68
Thanks for the holiday wishes ... slipslidingaway Dec 2014 #69
Home again, home again for a long weekend ... slipslidingaway Feb 2015 #70
(((slipslidingaway))) Solly Mack Feb 2015 #71
Thanks Solly Mack ... slipslidingaway Mar 2015 #72
Going home tomorrow ... slipslidingaway Apr 2015 #73
What a relief that must be Tab Apr 2015 #74
Yes Tab it is a great relief to be home and thank you ... slipslidingaway Apr 2015 #75
How are you both doing?? 2theleft Apr 2015 #76
We are both doing well thank you ... slipslidingaway May 2015 #77
Where we are now .... slipslidingaway Aug 2015 #78
A 'normal routine' is a true blessing! Ruby the Liberal Aug 2015 #79
You have that right, love to be normal and boring ... thanks :))) n/t slipslidingaway Aug 2015 #81
Holding my breath for you both KaryninMiami Aug 2015 #80
Thanks, all we can do is take another step forward ... slipslidingaway Aug 2015 #82
Short update ... slipslidingaway Sep 2015 #83
I hope your Florida stay onethatcares Sep 2015 #84
Hope to be ... slipslidingaway Sep 2015 #85
we are in st pete onethatcares Sep 2015 #86
Seems if it is not one thing, it is another ... slipslidingaway Sep 2015 #87
Great news ... slipslidingaway Sep 2015 #88
Safe trip! Solly Mack Sep 2015 #89
Thank you Solly Mack ... slipslidingaway Sep 2015 #90
Here we are, you never what to say ... slipslidingaway Dec 2015 #91
Good luck! Tab Dec 2015 #92
Thank you, the waiting is the hardest part ... slipslidingaway Dec 2015 #93
In my case Tab Dec 2015 #94
Thanks Tab ... slipslidingaway Dec 2015 #95
First round of vaccinations Again a few weeks ago ... slipslidingaway Mar 2016 #96
Removed the KA with underlying squamous cell carcinoma on Monday and all looks good, second ... slipslidingaway Apr 2016 #97
17 months after the second bone marrow marrow transplant and the counts look good ... slipslidingaway Jun 2016 #98
Numbers bouncing around a bit ... slipslidingaway Aug 2016 #99
No complaints ... slipslidingaway Sep 2016 #100
A great day, final results will take a week or so ... cliffside Dec 2016 #101
The roller coaster stopped on 1/17/18 cliffside Feb 2018 #102
I'm so sorry PennyK Feb 2018 #103
Thank you ... cliffside Aug 2018 #104
Slip, I hope you are still with us. onethatcares Sep 2018 #105
hubby is just starting this journey.. we are in eburg.. samnsara Oct 2018 #106
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