Ugh In hospital 2nd round of Vidaza didn't go well

[traceyn11]

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.

[Neil Cuadra]

Originally Posted by traceyn11

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.

[traceyn11]

Thanks Neil. My daughter is taking pics and video on her phone and is going to send it to my phone.

[DanL]

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

[Cheryl C]

That's so disappointing Tracey. I hope the search for a donor is successful and you soon have an opportunity for hope and cure.

[italianburrito]

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

[traceyn11]

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.

[Faye R]

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

[traceyn11]

Originally Posted by Faye R

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!

[traceyn11]

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!

[italianburrito]

So how are you doing? Have you started back up treatment?

[traceyn11]

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?

[italianburrito]

Originally Posted by traceyn11

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.

[traceyn11]

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.

[italianburrito]

Originally Posted by traceyn11

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.

[traceyn11]

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!