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  #1  
Old Mon Jan 23, 2017, 01:07 AM
dnewman80 dnewman80 is offline
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My Myelofibrosis and Transplant Blog

Hi all,

I'm a 36 year old Australian and I was diagnosed with myelofibrosis seven and a half years ago. Next month I will be undergoing a bone marrow transplant to hopefully cure me of this disease.

I've decided to create a blog to share my story and my upcoming experiences with transplantation. You can find it here:

https://dnewman80.wixsite.com/mfandme

I hope all blood cancer patients and their loved ones can get something out of it.

Best wishes,
Dane.
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  #2  
Old Fri Feb 17, 2017, 06:05 AM
dnewman80 dnewman80 is offline
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Hi all,

I've recently added a couple more posts to my blog. They tell the story of my wonderful family. You can find it here:

https://dnewman80.wixsite.com/mfandme

All the best,
Dane.
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  #3  
Old Fri Feb 17, 2017, 12:43 PM
Neil Cuadra Neil Cuadra is offline
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Dane,

You write well. I hope others will learn, from what you have written, about the importance of family, about hope for the future, and about being realistic as well.
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  #4  
Old Sun Feb 19, 2017, 02:05 AM
dnewman80 dnewman80 is offline
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Quote:
Originally Posted by Neil Cuadra View Post
Dane,

You write well. I hope others will learn, from what you have written, about the importance of family, about hope for the future, and about being realistic as well.
Thanks Neil, your kind words are appreciated.
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  #5  
Old Mon Feb 27, 2017, 05:06 AM
dnewman80 dnewman80 is offline
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Hi all,

After a short delay, the transplant process is about to get started this Wednesday. I've just added a post on my blog that provides a brief outline of the bone marrow transplantation process. I will provide further updates as the procedure gets underway.

https://dnewman80.wixsite.com/mfandme

Cheers,
Dane.
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  #6  
Old Mon Feb 27, 2017, 12:10 PM
bailie bailie is offline
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Dane, I enjoyed reading your blog. It brought back vivid memories of expectations when I was at your stage. As we all know, it seems every person's journey is different.

I experienced no pain through the entire process. It was mostly fatigue and being uncomfortable with doing basic life functions. To my surprise I was not interested in reading, watching TV, working on the computer or entertainment in general. The transition for me was interesting because I felt great going into the SCT. I was golfing and walking the 6 mile hilly course all summer right up until a week before the SCT.

I only had four days of chemo prior to the SCT ("mini-transplant") because of my age. The first two days I thought this was going to be a breeze. I walked at a brisk pace over five miles each of those first days and enjoyed everything I wanted on the food menu. About halfway through the third day the fatigue set in and I struggled to walk a half mile. The fourth day I was slowed more. Soon I experienced a great sense of smell which was problematic. The rubbing alcohol was especially difficult and I had to cover my face every time. Additionally, the taste of food and water (almost all food) changed completely. For me the food tasted like dirt clods. This is when you need to use your imagination to find something that works for you. For me it was tomato soup.

Then came the SCT. My donor was a 20-year old male in Germany. He was the only good match that was found. The SCT itself was uneventful and I slept through much of it. As expected I continued to be very tired. My blood counts came in about Day 11. I had a BMB at Day 30 and my chimerism was 100 percent. I left the hospital on Day 14 still feeling very fatigued but glad to head for a close by apartment. We had to be within 20 minutes of the hospital. Each week I was walking farther and went home from the apartment at Day 80.

I had very few side effects. No mouth sores, very little skin GVHD, some itching of face and scalp but relatively manageable.

As previously noted, every experience has its own personality. We wish you the best and I will look forward to continue reading your blog.
__________________
age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.

Last edited by bailie : Mon Feb 27, 2017 at 07:53 PM.
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  #7  
Old Thu Mar 2, 2017, 04:47 AM
dnewman80 dnewman80 is offline
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Thanks for going to the effort of sharing your experience Bailie! I really hope that things keep going well for you.

I had my first dose of chemo today. I'm feeling pretty good at the moment, but of course I'm not expecting that to last. I've updated my blog if you want to keep you all in the loop.

https://dnewman80.wixsite.com/mfandme

Cheers,
Dane.
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  #8  
Old Thu Mar 2, 2017, 12:05 PM
bailie bailie is offline
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Dane, I continue to read your blog with interest. I had a three lumen Neostar. You will come to appreciate it. So easy for the necessary fluid exchanges. The primary difficulty will be firstly to get used to it but that happens quickly. Secondly the protective dressing needs to be changed about every seven days (no problem). And thirdly, taking showers and keeping the dressing dry for each shower.

I can feel your experience. It is so easy in quiet moments to reflect with "what am I doing here". It is so different that anything most of us have previously experienced. The mental part of this experience should improve with time. Your caregiver will be very important for you. Hopefully you will have a back-up caregiver. You have received good advice to limit your contacts with people. You do not want even a cold through this process.
__________________
age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.
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  #9  
Old Mon Mar 13, 2017, 08:36 AM
Sue&Dave Sue&Dave is offline
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Hi Dane - I continue to read your blog with hope that it will give me some insight into my husband's future. My best to you and your family - you have people all over the world thinking of you and praying for you!
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  #10  
Old Tue Mar 14, 2017, 07:10 PM
dnewman80 dnewman80 is offline
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Thanks everyone for you best wishes.

I'm now at day 6 post-transplant and coping pretty well so far.

And I've been able to keep up semi-regular posts of my blog. So please jump on and have a read:

https://dnewman80.wixsite.com/mfandme

Thank you all,
Dane.
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  #11  
Old Tue Mar 14, 2017, 07:38 PM
bailie bailie is offline
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We are still reading and find your blog very interesting. Your experience is so meaningful for us who have gone through a stem cell transplant. The big days are Days 10-14. You will be there soon. Then it will be a game of patience and identifying noticeable changes every week. Don't expect too much too soon but look forward to the small progressions. Keep up the good work.
__________________
age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.
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  #12  
Old Thu Mar 16, 2017, 08:42 AM
lisa3112 lisa3112 is offline
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Great read dane! I've written my transplant trip in a diary.. but havnt put it online. Its a great idea. I looked endlessly on the Internet during my treatment for other stories. Where are you getting your transplant? I'm from melbourne too. Hope all is going as well as can be expected. I'm getting my "post 1yr" check up next week. We are having a joint party this sunday.... my sons second bday and my '1st rebirthday'... wierd coincidence that they are on the same day. Good luck!
__________________
Now 30yr old. Diagnosed AML dec 2015 (Most likely MDS prior). Trisomy 6. Runx1 mutation also. Had induction and consolidation chemo. Marrow failure ++ so SCT on 21st of March with MUD. Married with a 1yr old!
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  #13  
Old Sun Mar 19, 2017, 12:01 AM
dnewman80 dnewman80 is offline
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Thanks again everyone for you kind wishes. I'm now at day +10 and I'm doing as well as I possibly can at this stage of the process.

Lisa, congratulations on reaching the 1 year mark!! And happy b'day to your son as well. I'm in the new transplant ward at Royal Melbourne - it's very comfortable and the nurses and doctors are brilliant. But I also can't wait to get out of here at the same time! Hopefully not too long to go before that can happen.
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  #14  
Old Sun Mar 19, 2017, 08:10 AM
lisa3112 lisa3112 is offline
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Wow +10! Thats great! I was at olivia newton john centre (the austin). I've heard great things about the royal melbourne. Keep up the good work. Eat lots of ice during methotrexate (if you have that... I assume you will). I didnt get mouth ulcers and I think the ice helped.
__________________
Now 30yr old. Diagnosed AML dec 2015 (Most likely MDS prior). Trisomy 6. Runx1 mutation also. Had induction and consolidation chemo. Marrow failure ++ so SCT on 21st of March with MUD. Married with a 1yr old!

Last edited by lisa3112 : Sun Mar 19, 2017 at 08:59 AM.
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  #15  
Old Tue Mar 28, 2017, 12:23 AM
dnewman80 dnewman80 is offline
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Thanks Lisa.

I'm now at +19 and am still doing well (will hopefully update my blog today). Just having a frustratingly slow wait for engraftment....

Cheers,
Dane.
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  #16  
Old Wed Mar 29, 2017, 04:25 AM
Cheryl C Cheryl C is offline
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G'day Dane - From a fellow Aussie, "Goodonyer mate!" Hang in there and all the best for a successful engraftment! I'll be watching for your posts.
__________________
Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. On watch and wait since Feb 2012. IVIg 4-6-weekly. BMB Feb 2014 - no blast transformation. 2017 still stable.
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  #17  
Old Wed Mar 29, 2017, 06:09 AM
lisa3112 lisa3112 is offline
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Dane thats great you are doing well! Once you get a few white cells its amazing how quickly the neuts come. Not sure if its the same there, but at ONJ they have a white board right in front of your bed... so each morning the nurse writes your results in. Its torture!
Hopefully the royal melb let you out early. The frequent trips to the hospital for bloods etc is annoying, but so worth being at home! Come on neutrobombs (thats what my family called them) haha!
__________________
Now 30yr old. Diagnosed AML dec 2015 (Most likely MDS prior). Trisomy 6. Runx1 mutation also. Had induction and consolidation chemo. Marrow failure ++ so SCT on 21st of March with MUD. Married with a 1yr old!
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  #18  
Old Fri Apr 28, 2017, 02:24 AM
dnewman80 dnewman80 is offline
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Hi all,

Long time between posts, but I'm still on my feet. Today is day 50 post-transplant and everything is travelling smoothly at this stage. I've just added a new post to my blog:

https://dnewman80.wixsite.com/mfandme

Cheers,
Dane.
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