I'm glad you decided to make the trip despite your father's illness. I realize that today is your Good Friday, so let me wish you a very Happy Easter. They say that the weekend weather will be gorgeous, so I hope you have a good time here - I live in New York.
I'm still waiting for my pneumonia to clear up before I do any further treatment for the AML. I have an MD appointment Monday afternoon, and they will take a repeat x-ray, but since I'm a physical therapist, I have a high-grade stethoscope, and I can still hear crackles in my lung, so I know it hasn't resolved as yet. I suspect I'll need another round of antibiotics. In the meantime I did get my slides sent off to Memorial Sloan Kettering (where I had a consult about a month ago), and I did have to be transfused with 2 untis of blood, and I'll probably need another next week, as my Hgb had dropped to 6.4 as of nearly 2 weeks ago. Here it's just a matter of going to the hospital infusion center and spending a couple of hours sitting in a recliner chair and sleeping, reading or watching TV, so it's not so bad.
I'm sorry your dad had to be in the hospital for the Vidaza. Here, unless someone has a lot of problems, the patient goes to an infusion center every morning for the shot and then goes home. Of course they monitor the patient and would admit them if there are any problems. I do hope he gets to enjoy a lovely Easter with your family and that the test results will be good.
Thank you for your wishes. Today is Good Saturday for us and although it is going to be quite different than being back home I intend to find a Greek church and celebrate Resurrection. I am very happy that things evolved in a way that allowed me to be here...a week ago I was not even sure I would make the trip after all.
My dad had to be in hospital because of his kidneys as well. Last time he was out and did a blood test all his indicators were down but his creatinine was up and this combination can be dangerous for him. So, in order to bring everything back to order he needed to stay in hospital. However the doctor has already told us that even when everything looks fine he will have to stay in hospital while doing Vidaza in order to be monitored and have blood tests on a daily basis. I pray that he won't have to go to hospital more often that 1 week per month because this really brings him down. Last week he was really upset and at some point he told me that he knows that he has to deal with is cancer...I tried to remain calm and explained to him that myelodysplastic syndrome is not cancer but is is also not an easy disease to fight and that good psychology in mostly important for hie well being. I also told him about John Hopkins hospital where they have this program for international patients and you can send them all your tests, they will charge for about 800$ to 1100$ in order to provide us with a second opinion based on the evidence they have. This is just for an opinion and perhaps a medical consultation but not for any further observation. I think that it won't harm to go into this program and have another specialist either verify what we already know or share a new aspect with us.
I hope that your pneumonia ceases down soon enough and that you will fee better. My greatest fear for my father now is that his immune system is too fragile and that if he is not conscious enough he might catch something too. However the weather should be good and I hope that he gets some sune, peace and quiet as he needs it so badly!
Well, it is 6 in the morning right now so I better start organizing my day in your beautiful city!
Lots of love and take care of your self my friend!
I don't know where you are staying, so here's a selection of Greek Orthodox churches in Manhattan. There are many more in Astoria, Queens - home of a very large Greek community. If you are on the east side, I guess the Cathedral is the best bet. The photo makes it look gorgeous.
Enjoy your day in Manhattan. According to the weather forecast, there will be some clouds later today. The clearest day will be Monday. If you are planning to go up the Empire State Building, I'd probably pick either first thing today or Monday, because it's not good if there are clouds. Whatever you do, have fun.
Have a very Happy Easter.
Just a couple of things. First, I was never aware the Orthodox church called it "Good" Saturday. We tend to call it "Holy" Saturday in the Western Church. And, of course you know we call the day Easter but you called it "Resurrection." Is that the way the Eastern church calls it?
I think I've mentioned used to be the TA for the Greek/NT prof in seminary. We became a little familiar with the Greek church. Never knew all of that, though. We didn't really study it. I've never really understood why we celebrate the holiday on different days.
As for your dad's emotional state of being at the moment, you know, I'm of the school that it's really not great to try to package your emotions into this box or that box during treatment. The patient has enough going on for him or her not to have to try to fight that battle. He just has to stay determined to fight the thing but he can't always be positive. This is a really depressing situation.
I'm with you that MDS is not a cancer, largely because I was told that in the beginning. Just so you are aware of it, there are those in the medical who have taken to describing MDS as a cancer. I doubt it will matter in your conversations with your dad, but if he does pick up on that somewhere, just be aware it's out there.
Thank you for the links u sent me. I had already found the church of St.John the Baptist and I was planning to go there, however I just got back after 12 hours of pure walking and me feet refuse to wear any more shoes for today so I am not sure what I will do after all. I visited the Empire State building today and it was really breath taking! I am staying staying close to the Financial district so I get to walk around a lot and see all kinds of news things!
The weather is just on my side these days!
Well, Ressurection is the reason why we celebrate Easter. I mean, we call it Easter as well but it was Jesus Ressurection that made all this happen. Specifically, this Sunday we call it Easter Sunday as this day marks the end of the period, end of fest for those who follow the tradition. Resurection is actually an event that we all feel blessed and happy with since it signifies not only Jesus sacrifice for humanity but also the fact that he came back from the dead-in a way- in order to guide people and continue teaching in a divine and less human way.
Regarding my dad now...I think that whatever reaction or way of handling he decides to adopt will be justified and reasonable under the circumstances. I just feel that I have to disagree with him every time I simply don't agree with him because this is the way our relationship has always been and I would not want to change this due to his illness. So, if he wants to treat himself as a patient who suffers from cancer, then so be it. I will simply treat him as a person who suffers from MDS and we will both be "happy"! He calles me on the phone just earlier to wish me Happy Easter -Greece is 7 hrs ahead- and he sounded quite alright. I told him that I love him and he told to take care of myself, worried yet happy that I made it to NY after all.
The next step will be to do a blood test and call me to tell me that his results came out alright...This is what I pray for!
Hope you re well?!
Regarding your comment;
I just feel that I have to disagree with him every time I simply don't agree with him because this is the way our relationship has always been and I would not want to change this due to his illness. So, if he wants to treat himself as a patient who suffers from cancer, then so be it. I will simply treat him as a person who suffers from MDS and we will both be "happy"! "
From a senior of 64 years who was diagnosed with CML IN 2005 at the age of 57. My thought would be maybe closer looking at from your dad’s heart. Perhaps instead of disagreeing with him because that is the way your relationship has always been. Well perhaps if you just listened and put your arms around and gave him a heart felt hugs and kiss, and said I love you, without disagreeing with him,that would mean the world to him. He needs your compassion and understanding more then anything else. Sometimes our parents, mine are both gone, need some dignity and some control and choices, we don’t have many left. After all he is being stripped of a lot of choices, let alone aging and a diagnoses of.. it can be a bit challenging and scary.
I have a daughter in the medical field and her husband is a doctor. I don’t know how over the years she got so cold, and hard and does nothing but lecture me, to the point we don’t have a relationship, because I can not deal with the harsh words or cold spirit. It tends to knuckle one down in spirit.
I am trying to say it in a kind way to you, then to wait until it is to late to realize it. Sometimes hind sight helps other to not stumble in the same pit falls, of human nature and the habits we are used to.
Wishing you and your father the best.
Sorry for not responding in a while, I have been quite busy with life stuff and trying to get things back to normal. My father is doing well on his 6 week chemo cycles. He is scheduled to go in for knee replacment surgery in a month so another stressful time. He wants to do it and is determined to get it done. The last knee he had done he did well with but 3 months later is when he was diagnosed with AML. I spoke to the onocologists and they say that surgery was just a coincidence before. Of course our fear is that he has this surgery and things get worse after with his cancer. The doctors have no answer and have seen it happen and also not seen it happen, so they determine that surgery does not have anything to do with cancer and how it works in the body.
Any thoughts? Hope everyone is doing well.
Surgery isn't going to have anything to do with his AML. I mean, so long as he had sufficient PLT -- and they won't operate on him unless he does -- there is no contact between the two. But it can't influence the marrow into going rogue. So don't give that another thought.
I hope the knee replacement goes well. If it does, and it usually does, he'll be in so much less misery. I think this will be a good thing for him.
I am new to this website and just spent the last hour reading all of your posts. My 75 year old father was diagnosed with AML on July 30 2012. He did the induction chemo (the 7+3 regimine) and it did not work! Although he tolerated the chemo so well (the doctors were shocked because of how intense it was and his age) it didn't work, so on to plan 2. He did 10 days of Dacogen and tolerated it pretty well. He was in the hospital for 5 weeks, came home for a week, and then had to be rushed back because of a high fever. He was so sick for 2 days and like magic, bounced back on day 3. We were amazed! Like your dad Robin, he was strong and healthy and worked everyday. He and my 73 year old mom walked everyday 4 miles. Even in a snowstorm! Now he is weak, and fragile and very neutropenic and it breaks our hearts. His numbers slightly came up today for the first time in 7 weeks. He is also very angry and moody (which I can't say I blame him) but so out of character for him. We do another BMB on Thursday to see if the Dacogen worked. If not, I am not sure of our other options. I was reading on some of the other posts that they had to do a few rounds of Dacogen for it to work but no one has told us that yet. Also, does anyone know about a chromosome 17 abnormality? The doctors have told us that that is what stopped the induction chemo from working. Any information would help. Thank you!
Dacogen and it's "cousin" Vidaza are both slow-acting drugs, and it can take up to 4 cycles to see if they are working.
Perhaps Warrior, who is a scientist and is better able to understand and explain genetics, will chime in on the chromosome 17 issue. I did a brief search and yes, it does appear that a chromosome 17 abnormality has negative impact - in fact it would explain my problem in getting into remission ( I have a t(2,17) - which when you look it up is more linked with B-cell lymphoma than AML).I really don't know. BTW, I had a delayed respons to induction chemo - it took about 8 weeks post start of induction for my counts to come up.
What does a delayed response mean? They told us that not only did it not work, it made things worse because it killed off some of the mechanisms that helped fight it. Did you have a BMB after the chemo? What did they say? Tell me where you are now in your fight. I cannot find a lot of info on the chromosome 17, but the doctors do not say much about it....so aggrivating! Thank you for getting back to me so promptly!
I had a Day 14 BMB which showed no change from the pre-induction BMB (which was also unchanged from the original, diagnostic BMB that was done 2 months prior - long story. This was all in 2011.). About a month after the Day 14 BMB, my counts started to go up. They did another BMB about a month after that but failed to get enough trabecular bone (that's the part in the center of the bone where the marrow is). My counts eventually normalized, but then they again deteriorated. Chemo can do weird things to your counts. I had a second induction (different drugs) in July of this year. When I went in my WBCs and ANC (absolute neutrophil count) were normal, but I was transfusion-dependent for RBCs and platelets. Post that chemo, my platelets went up but then dropped. I have just come out of another chemo - this time a Phase III study - and while my WBCs and RBCs have yet to recover, my platelets are in the normal range and have been for a couple of weeks. The post-treatment BMB showed no change, but I'm praying for another delayed response. If they can get me into remission, I know I have a number of 12/12 matched unrelated donors out there (I was lucky in that regard) for a transplant. I seem to be running out of options though, and as I just spent basically 9 weeks of this summer in the hospital, I really can't take it any more. I was just "sprung" yesterday, and trust me, it's heavenly to sleep in my own bed.
When you say that the chemo made things worse, I am guessing that you mean your dad's ANC is low. Hopefully, it will recover - albeit slowly. Neutrophils are the element in the WBC count that helps fight infections, (and the ANC is a percentage of the total WBCs and includes neutrophils - which are "grown up" cells and "bands" - which are baby neutrophils).