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MDS Myelodysplastic syndromes

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  #1  
Old Tue May 26, 2015, 07:43 PM
traceyn11 traceyn11 is offline
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Ugh In hospital 2nd round of Vidaza didn't go well

Had to go to ER yesterday because temp was 100.9. Diverticulitis flared up again, had really horrible cramps. I will probably be here until Thursday because ANC is at zero and WBC is at .7. So bummed because my son is getting an award from his high school tonight that I am going to miss. Not sure if they are going to reschedule the last 2 chemo appointments I was to have today and tomorrow. Then I found out I probably can't go back to work until late next week sorry just had to vent.
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Tracey, mom & wife,age 58, dx MDS RAEB-2 4/15, normal cytogenetics, Update: SCT cancelled. Blasts at 67%. New dx AML.
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  #2  
Old Tue May 26, 2015, 08:02 PM
Neil Cuadra Neil Cuadra is offline
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Quote:
Originally Posted by traceyn11 View Post
Had to go to ER yesterday because temp was 100.9. Diverticulitis flared up again, had really horrible cramps. I will probably be here until Thursday because ANC is at zero and WBC is at .7. So bummed because my son is getting an award from his high school tonight that I am going to miss. Not sure if they are going to reschedule the last 2 chemo appointments I was to have today and tomorrow. Then I found out I probably can't go back to work until late next week sorry just had to vent.
Tracey,

I don't know how to get you out of the hospital, but I have a suggestion for your son's award, if you're up to it. You're not supposed to keep valuables with you in the hospital, since they might disappear while you are sleeping, but if somebody who is there with you has a smartphone (or brings your smartphone) then a friend or family member at school can text you photos as it happens. You could even use Skype or Apple FaceTime or another videochat app afterwards to talk to your son while he's at school.
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  #3  
Old Tue May 26, 2015, 09:12 PM
traceyn11 traceyn11 is offline
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Thanks Neil. My daughter is taking pics and video on her phone and is going to send it to my phone.
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Tracey, mom & wife,age 58, dx MDS RAEB-2 4/15, normal cytogenetics, Update: SCT cancelled. Blasts at 67%. New dx AML.
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  #4  
Old Wed May 27, 2015, 01:00 AM
DanL DanL is offline
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I second Neil's suggestion. I was in the hospital for 30 days when I received my transplant last year and it was a very rich time for performances. We used facetime to stream the events to me so that I could watch them live. They used an IPAD on their end and I was using my laptop computer. It is not the ideal situation, but it definitely helped me stay connected
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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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  #5  
Old Wed May 27, 2015, 04:16 AM
Cheryl C Cheryl C is offline
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That's so disappointing Tracey. I hope the search for a donor is successful and you soon have an opportunity for hope and cure.
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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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  #6  
Old Wed May 27, 2015, 11:19 AM
italianburrito italianburrito is offline
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Wow so sorry to hear this! I hope for a speedy recovery for you. I love the idea Neal suggested for the event tonight. Skype has been our friend lately too
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Daughter of father diagnosed with MDS RAEB-II intermediate risk due to normal cytogenetics. Blasts at 13% peripheral blood at diagnosis with no cytopenias. 6 cycles on Vidaza then on to SCT at Duke. BMT from my brother and now showing signs of relapse. DLI in the works.
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  #7  
Old Wed May 27, 2015, 06:15 PM
traceyn11 traceyn11 is offline
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Thanks Cheryl, Dan and Italianburrito. I'm still here. Maybe home tomorrow. WBC is at 9 and ANC is a little higher. My daughter sent me some pics she took with her phone. Her senior prom is Saturday. I sure hope I am home for it! She wants me to go with her to get her hair and makeup done on Saturday. I already told her I might not be able to. At least I am back on a neutropenic diet instead of liquids and am off the i.v.
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Tracey, mom & wife,age 58, dx MDS RAEB-2 4/15, normal cytogenetics, Update: SCT cancelled. Blasts at 67%. New dx AML.

Last edited by traceyn11 : Wed May 27, 2015 at 06:17 PM. Reason: left stuff out
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  #8  
Old Wed May 27, 2015, 06:44 PM
Faye R Faye R is offline
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Hi Tracy
That liquid diet is not to good, for the first time in my life I got diverticulitis after my third round on Vidaza it was the anti nausea tablets that did it for me. Some times they let me out for a hour or two you could ask if you are still in there. I've just had my third BMB waiting for the results
RCMD RA 16% blasts
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  #9  
Old Wed May 27, 2015, 06:55 PM
traceyn11 traceyn11 is offline
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Originally Posted by Faye R View Post
Hi Tracy
That liquid diet is not to good, for the first time in my life I got diverticulitis after my third round on Vidaza it was the anti nausea tablets that did it for me. Some times they let me out for a hour or two you could ask if you are still in there. I've just had my third BMB waiting for the results
RCMD RA 16% blasts
Thanks Faye. My diverticulitis was found after my appendix abscesses in August. I had not had problems with it for awhile and was blaming it on vidaza but after reading your post I am wondering if it was the zofran. I am definitely going to bring that up with my hematologist!

Good luck on the bmb results!
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Tracey, mom & wife,age 58, dx MDS RAEB-2 4/15, normal cytogenetics, Update: SCT cancelled. Blasts at 67%. New dx AML.
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  #10  
Old Fri May 29, 2015, 06:39 PM
traceyn11 traceyn11 is offline
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Update - Finally Home!

Finally got to come home today and feeling much better than I did before I went in. Still on antibiotics for a few more days and confined to the house until Monday. I have an appt. with my hematologist on Monday to discuss the last 2 days of chemo I missed and to find out when I can go back to work. My WBC was up to 1100 and Platelets were higher too.

My daughter's prom is tomorrow so at least I am home for that!
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Tracey, mom & wife,age 58, dx MDS RAEB-2 4/15, normal cytogenetics, Update: SCT cancelled. Blasts at 67%. New dx AML.
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  #11  
Old Wed Jun 10, 2015, 08:35 AM
italianburrito italianburrito is offline
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So how are you doing? Have you started back up treatment?
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Daughter of father diagnosed with MDS RAEB-II intermediate risk due to normal cytogenetics. Blasts at 13% peripheral blood at diagnosis with no cytopenias. 6 cycles on Vidaza then on to SCT at Duke. BMT from my brother and now showing signs of relapse. DLI in the works.
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  #12  
Old Wed Jun 10, 2015, 11:22 AM
traceyn11 traceyn11 is offline
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Hi Italian Burrito. Thanks for asking. I am doing better although I had a nasty bout of IBS last night that caused me to stay home from work today. I start my next round of Vidaza next week. Thank goodness I will have had 3 full weeks of recovery. Hopefully things will go better this round.

How is your dad doing?
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Tracey, mom & wife,age 58, dx MDS RAEB-2 4/15, normal cytogenetics, Update: SCT cancelled. Blasts at 67%. New dx AML.

Last edited by traceyn11 : Wed Jun 10, 2015 at 11:22 AM. Reason: add sentence
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  #13  
Old Wed Jun 10, 2015, 12:53 PM
italianburrito italianburrito is offline
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Originally Posted by traceyn11 View Post
Hi Italian Burrito. Thanks for asking. I am doing better although I had a nasty bout of IBS last night that caused me to stay home from work today. I start my next round of Vidaza next week. Thank goodness I will have had 3 full weeks of recovery. Hopefully things will go better this round.

How is your dad doing?
I hope so too! Hang in there. Some good and bad news. Good news he is still tolerating chemo ok. He has been needing blood every week now which from what the doctor says is normal. His Hgb was 6.3 so he needed 3 units of blood. Its going to get worse before it gets better is what Dr. M said. Bad news is my aunt and uncle are not matches so on to the registry! I am hoping some loving and compassionate stranger can save my dads life. So now we continue on and hopefully but Sept/Oct. he can proceed with the transplant.

So I do have a question for you, does the doctor have you on an anti-viral, anti-fungal and an antibiotic to prevent another infection like this? They started all three of these medications from day one with him. Just want to make sure they are doing all they can to prevent another hospital stay.
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Daughter of father diagnosed with MDS RAEB-II intermediate risk due to normal cytogenetics. Blasts at 13% peripheral blood at diagnosis with no cytopenias. 6 cycles on Vidaza then on to SCT at Duke. BMT from my brother and now showing signs of relapse. DLI in the works.
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  #14  
Old Wed Jun 10, 2015, 02:04 PM
traceyn11 traceyn11 is offline
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Glad to hear things are going okay. I wish you good luck with the registry.

No, I am not on any anti viral, anti fungal or antibiotic. Up until I had the diverticulitis which I am sure was caused by Zofran, I was pretty healthy. My doctor never mentioned having me on those, but I am pretty sure I have a virus right now too because I have some sores in one nostril that I used to get when I would get the oral herpes. I am glad you mentioned that. I think I will ask him about it. My ANC and WBC are the same as before I got diverticulitis and I wasn't getting sick so maybe that is why he didn't put me on anything.
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Tracey, mom & wife,age 58, dx MDS RAEB-2 4/15, normal cytogenetics, Update: SCT cancelled. Blasts at 67%. New dx AML.
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  #15  
Old Thu Jun 11, 2015, 08:36 AM
italianburrito italianburrito is offline
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Originally Posted by traceyn11 View Post
Glad to hear things are going okay. I wish you good luck with the registry.

No, I am not on any anti viral, anti fungal or antibiotic. Up until I had the diverticulitis which I am sure was caused by Zofran, I was pretty healthy. My doctor never mentioned having me on those, but I am pretty sure I have a virus right now too because I have some sores in one nostril that I used to get when I would get the oral herpes. I am glad you mentioned that. I think I will ask him about it. My ANC and WBC are the same as before I got diverticulitis and I wasn't getting sick so maybe that is why he didn't put me on anything.


I would definitely ask your doctor. I personally think that all these meds are causing some of his nausea but at least he's protected somewhat from all that opportunistic crap out there. He's on diflucan, acyclovir, and bactrim. Some he takes every other day and some is everyday. His WBC's havent bottomed out either so Dr. M is being very cautious with him. As you see, being in the hospital can delay treatment which is something we dont want. Only his RBCs have needed to be replaced. Have you needed any blood transfusions? Platlets?

Zofran sent my dad to the ER so I understand where you are coming from. Bad Juju! He takes compazine and just started Emend for the nausea which is a 3 day pill. Dr. M is happy with how he is doing and so are we! Just need to get to Duke soon to get this rolling.
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Daughter of father diagnosed with MDS RAEB-II intermediate risk due to normal cytogenetics. Blasts at 13% peripheral blood at diagnosis with no cytopenias. 6 cycles on Vidaza then on to SCT at Duke. BMT from my brother and now showing signs of relapse. DLI in the works.
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  #16  
Old Thu Jun 11, 2015, 05:16 PM
traceyn11 traceyn11 is offline
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Hi Italian Burrito,
I got in to see a gp today and she put me on acyclovir for the sores in my nose and told me to just keep taking the Bentyl and tylenol. I felt a little better this afternoon, hopefully I will be able to go back to work tomorrow.

I did send an email to my hematologist yesterday about being on antibiotic, antifungal and antivirus, but I haven't heard back from him yet.

Since I think the Zofran is what caused the diverticulitis, I am going to ask him about taking something else. Thanks for the name of what your dad takes.

I haven't had to have any platelets or blood transfusions so far. Glad to hear your dr. is happy with how things are going. Will keep my fingers crossed that you get to Duke soon!
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Tracey, mom & wife,age 58, dx MDS RAEB-2 4/15, normal cytogenetics, Update: SCT cancelled. Blasts at 67%. New dx AML.
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