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Rose eden Guanzon
ParticipantDay + 15
Hi guys and gals. The docs say he was allowed to go home because his wbc is back to normal and he had showed no symptoms of adverse reactions to the transplant or to the any of the antirejection drugs. But it is too early to tell if the transplant was successful. Well, we count our triumphs by miniscule steps and we are just happy. We are staying near the hospital too. We are actually scared of being too far from the hospital. I suppose with each new day, we will eventually wean ourselves away from it.ParticipantDay + 13
We are going home tomorrow. The central line on his neck has been replaced by a PICC. Alleluia! We hope that the worst is over and pray that the stemcells of his sister find a good home in him. Pray, hope and do not worry! is my mantra.ParticipantGood luck Sue on your husband’s transplant. A haplo can be very good because the donor is usually young and hence has healthy and resilient cells.
Day + 6
My husband feels stronger. But his counts never reached the nadir the doctor is talking about.Day + 7
The doctor gave him Neupogen again. His appetite is good. The stomach issues have subsided. His WBC is still dropping but is still normal at 4.5. His hemo is now 7.8 and platelet is 65. These are low but he had lower counts. At one time, prior to treatment with decitabine, his platelet was only 8. His wbc was. 0.3 and hemo at 7.Day + 8
The waiting game is still on. We just did 12 laps of our hospital ward corridor. But he is eating well. The water with a little fresh lime juice and salt really settled his stomach.
ParticipantBrett until my husband came down with a fever that wont go away, we had no idea something was wrong. That night he got sick,he spent the day doing some heavy carpentry around the house, trimmed the branches of our tree and then we watched a movie on netflix while he drank a couple of beers and listened to his stereo. At around 12 am he started to feel feverish and had chills. I thought it was just flu. 3 days later, the fever was still there. He had a CBC and his WBC was 1.0. His hemoglobin was 8.5. Platelet was 80.our family doctor suspected mds but said it needed a bone marrow biopsy to confirm. We did not believe him of course. My husband built our house almost singlehandedly, did chores all day long, never been sick in his life. It took us 4 months to get that biopsy and that was only because his counts just wouldnt improve. I had never heard of mds till he got sick. We are now in the hospital undergoing a allo transplant. Best of luck and my prayers to you but certainly get the best medical help at the soonest time.
ParticipantChris, we are happy to hear from you. Thank you for keeping me company here. We are including you in our prayers too.
Paul i am so glad to hear from you again. We still continue to pray for your complete recovery. Yes,each transplant seems unique. The doctor gave my husband Neupogen after 24 hrs of the transplant. It is more common to give it on the 5th day after transplant. It is a relief to know you are doing well. You kind of dropped from the chatroom so to speak so i have wondered what happened. It is wonderful to know you are doing well. God bless!
ParticipantDay + 4
The constipation in the morning is happily resolved by mild diarrhea in the afternoon. My husband had bouts of nausea again but thankfully no vomiting. Hid wbc is still sky high at 13.4 but no fever or chills. He managed 5 laps around our hospital corridors. Tthe tiredness never leaves so everything is a matter of discipline. Even showers are milestones of his day.Day + 5
The wbc is 6.9 and now the diarrhea is persistent. But we remain upbeat. Tired?? Oh, yes! But he has learned to establish what he can do. So he goes to the bathroom by himself. We are not scared that he wouod faint. It seems that the transplant process may make you feel as though you are about to die of tiredness but your body stops short of actually dying. Tomorrow our doctor says he will be back on Neupogen. The tacrolumus and cellcept are of course still given daily.ParticipantHi Pat. Yes, they let me stay with him. We live about an hour’s drive from the hospital and i do not drive. So i have a suitcase of clothes and stay here all the time. My kind sister in law comes here, gets my dirty clothes and brings me fresh ones. The hospital has a caregiver’s room where i can shower. They are not strict about visiting hours too. Family can visit any time. We are at HUMC. The hospital staff has been nothing but kind and supportive.
ParticipantAlso, in the Philippines, papaya leaf juice is encouraged by the Dept of Health as a quick and cheap way to boost platelets when one gets dengue. We just do not know if it will work with mds because the it is the bone marrow itself that has a problem. Just mash some papaya leaves, squeeze through a filter and that’s it. Good luck!
ParticipantJoAnn my friend’s mom was diagnosed with leukemia almost 20 yrs ago. Unfortunately i had no idea what kind of leukemia as i did not know much about this disease back then. But the bone marrow biopsy accdg to my friend was leukemia. Her mom was sent home by the hospital because they could not do blood transfusions anymore. She has reached her limit. Pls understand this hosp is the best at that time but she lived in the Philippines.So she went home. She did not undergo any other treatment except for blood transfusions. But in the Phils, we have this plant called moringa. She pureed the leaves raw, mixed some honey to make it palatable and she just celebrated her diamond wedding anniversary last year and the leukemia had been in remission for almost 20 yrs. My husband has tried this but it is hard for us to get a steady supply here in the US. Also you need a lot if you want to do what my friend’s mom did. She drank that moringa juice like water. Asian stores sell moringa leaves frozen. Check it out. The internet has a lot of info about moringa. If my husband’s transplant does not take, we plan to go back and try this. But he has a sensitive stomach so we plan to boil the moringa before pureeing it.
ParticipantDay + 4
The antirejection drugs of choice by our doctor are tacrolimus and cellcept. My husband is tolerating them better than expected and certainly better than the horror stories we read on Google. There were initial bouts of constipation, amazingly resolved by horrendous bouts of diarrhea which made him weaker and now we have achieved some sort of equilibrium wherein they are just happily soft. Stomach pain episodes are painful but brief. Nausea, yes but no vomiting. He said to eat even tiny pcs of crackers or 2 bites of hardboiled egg every 3-4 hrs no matter how tired to make sure stomach does not become too acidic. He also drinks lime juice. Halve a lime, use 1/2 . Squeeze, dilute with water. He likes his with some salt. He drinks this first thing in the morning before meds and in the afternoon. Except for these, he had not eaten for the lat 5 days and has lost 10 lbs.ParticipantHi Pat. I am glad someone is reading this. It makes me feel not so alone. I have noticed that nobody has really finished telling us about what happens after transplant in this forum. So i promised i will update this whichever way mds takes my husband. I am tired of being told positive things. I want the lowdown. My husband and i are scared too but he said he feels like he is in a burning building. If he stays, he will surely die but if he jumps, he may die but at least he tried to change the inevitable. Who knows? He may fall on something soft. So we continue to hope for the best and put our trust in our doctor.He has high grade mds and that is like 2.5 yrs average lifespan after diagnosis. We have already used up half of that time because he was also doing so well with decitabine. When we went into this transplant, he was on remission still.
ParticipantDay + 2
His wbc is 13.3 and our doc discontinued the neupogen. She said not to worry. His old cells are dying but the growth of the new ones have nothing to do with that process. She expects to see improvement on the 9th day.Day + 3
The fatigue is relentless but he managed to walk a bit outside his hosp room. He actually did 3 laps of our ward corridor. His wbc is still 13.3ParticipantDay + 1
He was given Neupogen to increase his wbc. He is very weak and sleeps all the time.ParticipantI called them. Unfortunately, they have nothing going near Hackensack Meridian,NJ where my husband is undergoing BMT as I write this. I am getting worried. We live more than 40 miles away and i do not drive. After we are discharged, we have to come back for checkups twice a week minimum for 2 months. One bedroom apartments near HUMC are beyond our budget.
ParticipantJoseph my husband is undergoing a transplant on March 29. I am still unsure if this is the best way to proceed. He is 67 and has high grade mds RAEBII with aslx1 mutation. Prognosis is not good. He is now very stable with Dacogen. No blood transfusions for the last 9 months. I would be so grateful if you can give us an update on your Dad.
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