[poppyshope]

My dad ran anywhere from 1500-3000 after his inductive chemo and never had blood in his urine or stool- watch for that as that can be a sign for internal bleeding. He never got over 8000 and we had a manual count because we were getting platelets every other day and did not want to become refractory if there was no need to transfuse, we did not. It was scary because the risk for spontaneous bleed anywhere espcially the brain. He tolerated low platelets well everyone is different. Weigh the options because you do not want to become refractory to your transfusions because there is nothing out yet to boost platelet growth. Make sure they are crossmatched and irradiated to ward off refratory outcome. And I remember my dad going through platelets a lot at times of stress to his body ie:chemo and vidaza. Hope the counts settle in for you – keeping you and dad in my prayers-Jen

[poppyshope]

My dad ran anywhere from 1500-3000 after his inductive chemo and never had blood in his urine or stool- watch for that as that can be a sign for internal bleeding. He never got over 8000 and we had a manual count because we were getting platelets every other day and did not want to become refractory if there was no need to transfuse, we did not. It was scary because the risk for spontaneous bleed anywhere espcially the brain. He tolerated low platelets well everyone is different. Weigh the options because you do not want to become refractory to your transfusions because there is nothing out yet to boost platelet growth. Make sure they are crossmatched and irradiated to ward off refratory outcome. And I remember my dad going through platelets a lot at times of stress to his body ie:chemo and vidaza. Hope the counts settle in for you – keeping you and dad in my prayers-Jen

[poppyshope]

Mary you are right I am confusing the zolster with parvo because my son has thalascemia minor and the parvo virus b19 effects the red bloods and when he is exposed to the fifths or chicken pox or when my dad had shingles- he needs a transfusion because he stops making red blood cells, should he get it, that are mature (even though he never has true mature ones hence the “mediterranian anemia”)- sorry I just remember dealing with the Hematologist for my son and the one for my dad and trying to keep the two straight. But shingles is a dormant chicken pox virus if i am not mistaken? And that is in the parvo family i looked it up to be sure they are 5 viruses- chicken pox, measles, mumps, rubella, and the fifths disease. I remember also a lot of talk among the nurses about cancers and that a lot of reasearch is being done with it stemming from maybe virus exposure… or that it is a virus like disease -is that true? Maybe Jack or Neil can lend a hand at explaining that link or did I not get the full story. Anyway I remember my dad being itchy with shingles not as painful but he had a very high pain thresh hold he didn’t think BMB were painful when done right just uncomfortable-go figure. He also did not like to take pain meds so he would sit in oatmeal baths-and a steroid cream the sores were on his back and shoulder. Hope i have this right and sorry for the confusion- Jen

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Hi there I was searching in my dad’s medical records because I remember him having shingles too… and it was 2 months before his dx that he broke out in shingles right after he was deemed anemic after a well check up cbc. There must be a link between the parvo virus that causes shingles and chicken pox, because it effects the red blood cells exclusively, and with those taking chemo and or with a disease of the blood and immune system , like mds, this must be a weak spot-I wonder? Anyway what about oatmeal baths for the itching? Hope he feels better.-Jen

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and the d i will post when he naps only- sorry for confusion…

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Is it Chicken pox I remember someone in sloan having the same thing and they thought it was a reaction and it ended up being chicken pox- seems many MDS patients are or have come down with chicken pox or shinglew is here a link? I wonder?

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I meand shingles the baby hit the w-sorry

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Katie,

I am so glad you could get dad home- thinking and praying for you at this difficult time. Say everything you have to say it is definately a comfort to be able to do that…I know it was for me. Just be together now-

May God bless you and keep you in his care at this dificult time,

Jen

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Oh Katie, I am so sorry for you and your dad I feel like I cannot say it enough. I do know what you are going through, I walked this same path 3 months ago. It is just terrible to have to go through this, but being there holding his hand is a gift especially at his own home. I am just so sad for you and will keep you in my prayers. May God bless you and keep you and dad in his care at this time- Jen

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Katie-
Just checking in to see how you are and I know how you are – and Lynette is right your heart is sinking. I look back now and remember my dad wanting to come home and I wanted him to stay and do anything else he could do and he just wanted to see the kids Birthdays. I was so scared that he was giving up hope and he explained to me that just because he was re-directing his hope to now watch the kids blow out their candles, and be at home with us among his things, where he was comfortable did not mean he was giving up. (and he still wanted treatment in fact we were on our way down to NYP to see what else there was when he died) I think about that now and even though he was out for 12 days and most of it spent in the cancer center here in poughkeepsie getting transfusions I am so happy we went ahead and had a huge party for the kids and he sat on the deck with everyone and watched them blow out their candles, and i watch the video and look at the pictures all the time of that day and he was happy- I thank god for that! Katie, listen to dad now he will lead, help him by following – you are a great daughter and that is all he needs now.., and when the time comes you will know what to do just listen to your heart- I was always afraid I would not be strong enough, and that I would fall apart and cry- but I didn’t, and I would not trade those days at Sloane or when he got out with my dad for anything. I am praying for you -keep your hope and if you want you can always re direct it that isn’t losing it – I am sorry for what you are going through I really am-
In my thoughts and prayers, always-Jen
btw- i was reading about your dad’s confusion and the same thing happened to my dad when the blasts increased. The doctor said that these blast are sticky and can adhere to tissue in the brain that combined with my dad’s low RBC , and low Oxygen saturation, made him confused, but he never forgot to ask for back rubs- he was so cute about that the nurses used to laugh that he could not remember his lunch but would remember who he already asked for a back rub from!! Take Care

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Hello there i haven’t been on in a while, but came across your post. My dad had MDS and in the begining before he was diagnosed he had organized pnuemonia of the lower lobe of his right lung. At Sloane Kettering they removed the lower lobe of his lung thinking it was lung cancer- the infections was so bad it came up positive on the PET scan. Later when he was diagnosed they said that it was BOOP a fungal lung infection and he was put on vorconazol (sP?) among other many other drugs to keep infections at bay. It seems that this Dacogen can weaken the lungs because my dad had another spot that never quite cleared up but stayed the same size after he started the dacogen. The bronchoscopy and biopsys are the normal way of seeing that it is in fact fungal- at least that is what they did with my dad. Hope this helps- Jen

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Hi Katie,
I haven’t logged on in a while, but am praying for you and your dad. I actually went on to see just how YOU were doing- i have been thinking of you and how you are probably on the 12th floor- around the corner from the dunkin donuts i used to get my dad baskin robbin chocolate shakes from. I was wondering if you are there – there is a nurse named Ashleigh and she is wonderful she used to tell me everything and she was right – i found the nurses there were so on top of it! They used to say this is what is going to happen and what to expect so that I wouldn’t worry- they actually told me to take my dad home and enjoy him they were so right. Anyway, I am so glad you got some good news your poor dad deserves it and sometimes that is just what you need to get over the hump- it is hard to be in the hospital and not at home were you are comfortable. Take Care and Keep Praying – Jen

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Katie- I hope i did not scare you but this is a scary disease and unfortunately they have the potential to get very sick very quick! Can you call now and start the process with columbia? I just think Sloan’s protocols are strict and they are not too into out of the box thinking- don’t get me wrong my dad would have died sooner without their help they are great, but when they are done the window, for lack of a better word, is sooo small -days- my dad was the same he trusted his docs and so did I – it wasn’t until they said Hospice that he said to call Columbia. Right now i think i should have pushed for it as his Proxy- but i did not want to take away too much from him-does that make sense? I guess i have the luxury of hind sight whiich you do not, so I would push and even start the process- Also, there is a Dr. Estey at MD anderson Sloane knows him well my dad’s doctor told me to call him knowing Sloan would not go further, and i did they sent the records and Dr estey said goto columbia too. You can even fax the records and see what they say, a phone consult- then you have more info for dad. Sorry to go on and again anything i can do let me know- Prayers to you and dad- Jen
Also- i know Dr. estey was going to fred hutchinson after Md anderson so you can try him there he will call you and give you his cell to call him back a lot of compassion!

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Katie Call Dr. Felman or Dr. Roboz at Columbia Presbyterian right down the road. My dad was in sloan doing inductiond chemo that second round is too much that infection will take over if they don’t get that under control first…see what they say first and I know that at sloan they work with them at columbia. My dad was with dr. boruchov and comenso and dr polaris was from the transplant team he was on the 12th floor doing induction. Anyway, he too did not go into remission and that chemo weakened him so much that he could not fight he was out of the hospital 12 days when he died on the way to columbia- i wish we went sooner. Right now you are scared and grasping step back and take the time to call these doctors. Their protocol is different then sloan, also can you get to MD anderson they are doing a lot now? Even if you can’t call they were the ones who told me to call columbia- my dad was too weak to go. Katie Sloan told me to enjoy my dad and do transplants that we had 3-6 months after that 2nd round of chemo he got 12 days and died 2 months ago…you have a day to make calls i would do it. I will keep you in my prayers and feel free to e-mail me I will even make the calls for you I know how hard it is to make the time when you are caring and worried for someone. Stay strong- Jen

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Jack – if it looks like a go do it! I wish every day that I pushed my dad to go to Columbia sooner it was literally a two week window, and everything changed on us so fast- I just took my cue from him because he had just spent close to 3 months in Sloan Kettering- the one thing with this disease is the windows of opportunity – I will pray for you and your wife and know that whatever choice you make will be the right one for you with all the knowledge you both have in this insidious disease. Keep me posted I am in NY, the hudson valley, and if I can do anything let me know. There is also a great doctor Dr. Estey at MD Anderson he has since retired and is going to Seattle but he still answers calls there and I have a number to reach him e-mail me if you need it he is wonderful and is the reason I got into Columbia -Sloan couldn’t get us in there and discouraged it. Dr. Estey however, said to try Dr. Feldman he is really good to run ideas by and willing to do it even if it is over the phone with a fax of the medical records. Hope this helps – Take care, Jen

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