Father newly diagnosed

[run4peach1]

Hello everyone. I am new to this forum and am appreciative for having someone to listen. My father, one month from his 78th birthday, was told 6 years ago that he had a high platelet count. He has been on hydrea for all that time, and with good results. They even lowered the dosage from time to time as his count was good.

Now, about a week or so ago, he was told they need to start a new treatment, the 5 shot series of Vidaza. I noticed two different diagnoses on his paperwork, one was MDS and the other Myeloproliferative. The nurse giving the shot told him they are the same thing. After a lot of googling (which can be a bad thing) I see that they are of the same family, but are somewhat different.

The doctor told him he doesn’t have leukemia and that he won’t let that happen, but he did tell him that 5% of the people that have what he has do develop leukemia. After tolerating the 5 shots of vidaza very well, his latest blood count showed he was anemic and needed a transfusion. It was a scary, but I kind of new that would be coming as I read 90% of people with MDS need a transfusion from time to time. This anemia angle, along with the 5% leukemia risk, has me thinking he in either the RA or RARS stage of the disease. I am planning on going to his next appointment with the doc to find out more.

What confuses me a bit is that MDS often involves low platelet counts, not high ones. Anyhow, I am feeling a bit better about the transfusion; he is very weak and from what I understand it will offer a lot of help. Also, I know that both the MDS and the Vidaza can cause the anemia.

My Dad is a very young 77, he looks 57. He can walk people half his age under the table. He is internet savvy enough to google these terms as well, and he is scared, as am I. It saddens me to see his so weak. I assume the transfusion will help him feel better fairly soon, and the Vidaza is to lessen the need of transfusions, right?

I just wanted to get some insight of the disease from people living it. I know this isn’t something that will go away (at least in most cases) and wanted some idea as what to expect, what to ask, etc. I know it’s highly variable on the severity of the stage. Any insight anyone can give me on anything, I truly appreciate it. My thoughts and prayers are with you all.

Thank you.

[Dick S]

Others will chime in here, but Vidaza doesn't "cause" anemia, it's supposed to help "cure" it.
I certainly can relate to the weakness your father has, I am that way all the time and am still waiting for my MDS to get bad enough to start some type of treatment.

[run4peach1]

That's what I thought as well, but on vidaza's website it lists anemia as one of the common side effects. I guess it really doesn't matter as long as he is getting the transfusion (actually as I type this). Hopefully the vidaza will eliminate or slow the need for transfusions. Good luck with your condition as well.

[ESeda]

Welcome to the forum. Your dad is lucky to have you near.

Vidaza is an excellent chemotherapy drug. It targets tumor cells the are at the root of the decease. However, it also effects other cells which may lead to low rbc's causing anemia. Hopefully along with the Vidaza you dad is getting something to increase the production of red cells. It will be a constant balancing act to maintain blood counts in an effort to eliminate the need for whole blood transfusions.

This is the right place to have your questions answered. God bless you and your family during this trying time.

Eli

[run4peach1]

Thanks for the kind words. I am very upset with the situation, but I am trying to be strong for my Dad. It's crazy, one minute you are encouraged by what you read, the next minute discouraged. It's the uncertainty that is the worst part.......but at least he's being treated and with the new drugs he has some hope. I was thinking of getting a second opinion, mainly due to his previous platelet count being high and needing drugs to be controlled. Everything I read about MDS talks about low platelet counts. I guess they worst thing you can do is diagnose things on the internet.

I am glad to hear your wife is doing so well with the Vidaza. Hopefully my Dad will as well..........from what I hear it may take a while. Thanks, and my thoughts and prayers are with you all.

[Birgitta-A]

Hi run4peach1,
If I have understood your posts correctly your father probably have had Essential Thrombocythemia between 2002 and 2008. Essential Thrombocytopenia is one of the four myeloproliferative diseases. He has been treated with hydrea with good effect on his high platelets.

When the nurse said that a myeloproliferative disease is the same disease as MDS she was wrong but it is true that there are so called hybrid forms of the diseases – several patients in this forum have both Myelofibrosis (one of the four myeloproliferative diseases) and MDS.

Thrombocythemia can transform to MDS but it is very uncommon. Treatment with hydrea may increase the risk for transformation but it is still a rare adverse reaction.

It is a very positive prognostic sign that your father is “a very young 77” – patients without other diseases and with good performance status have a better overall survival (tell him that).
Kind regards
Birgitta-A
69 yo, dx MDS Interm-1 May 2006, transfusion dependent, Desferal for iron overload 4 days with transfusions, Neupogen 2 injections/week for low white blood cells, asymptomatic

[run4peach1]

Thanks for the positive outlook. I will let him know. I just got off the phone and his first transfusion went well (so far) and he said he feels a little better already. I know it can't be diagnosed with what I've posted on here, but doesn't it sound like he is in the RA or RARS stage?

[run4peach1]

My Dad had his first blood transfusion yesterday and it went well. He says he feels better this morning but still a little weak. I guess that is to be expected?

I don't want to question anyone inappropriately, but is it possible that the long term effects of the hydrea (6 years) could cause the problems he has now? I've read that it can cause a number of things. I've also read (and some on here have agreed) that a high platelet count rarely leads to MDS. Again, I don't want to doubt any diagnosis, but it just causes me to wonder.

[Birgitta-A]

Hi run4peach1,
There are many articles about thrombocythemia and hydrea. Most of them are more tham 10 years old. Here is an abstract about thrombocythemia and cytoreductive therapy written by A Tefferi and others. Dr Tefferi is a world famous expert on myeloproliferative diseases. These authors have not found that treatment with hydrea and other cytoreductive drugs increases the risk for leukemic transformation.
http://www.nature.com/leu/journal/v2.../2404500a.html

Good that your father feels better after transfusion !
Kind regards
Birgitta-A

[run4peach1]

Thanks for the article!!

[Dontufret]

My father also has MDS. It is a very confusing and frustrating condition. I can empathesize with how you are feeling. My father has been battling this condition for a while now. He has endured 2 bone marrow biopsies and has a 3rd one coming up soon; God bless him. Getting educated on the disease is the best thing you can do for your father. There is not alot that we can do to help in making them better...as a matter of fact all we can do is love and try to care for them and be there for them as much as possible. I try to go to most of my father's doctor appts. with him. Some of the time it is hard to absorb & remember all they tell you; so we help each other remember all that we were told. I ask alot of questions (which I don't think my father minds)! I do alot of research, so that I can come up with more questions. LOL I think the most important thing we can do for them is to try and support them and just love them as best we can. Also, just take it one day at a time. There will be good days and bad days for him....and some days he will feel stronger than others. My dad has had to have about 22 to 24 blood transfusions to date; which sadly has made him have Iron Overload. The doctor is trying to get him started on ExJade to remove the iron. I am a little scared about this treatment but it is something that I know that he HAS to have. I am scared of what side effects he will have to endure...as he already has to endure so much. I just say prayers everyday that the good Lord will look after him and take care of him. Prayers to you and every one else that has had this condition or someone they love with this condition. Hang in there and God be with you. www.AAMDS.org has very good information on it. They also have a booklet they can send you titiled "Your Guide to Understanding MDS" It gives you answers, support, and hope! It covers a good bit and also has a sheet you can tear our of questions to ask your doctor! It can help you with resources too.

[Neil Cuadra]

When we go to appointments, I always bring paper and a pencil. If we want to remember to ask something, we write it down ahead of time. When the doctor talks to us, my wife asks most of the questions, we both listen, and I take notes.

Even if we remember all of the answers right after the appointment, we'll often need those notes later. I recommend to everyone that they not try to keep all this information in their heads during an appointment, even if writing it down makes it a little slower to consult with the doctor. They'll appreciate it if you remember what they say!

[run4peach1]

Thanks, everyone, for the support. I truly appreciate it.

[run4peach1]

OK, I have an update.........

After my Dad got his first transfusion after the first Vidaza treatment, his RBC went up to 9.1 and I know that's kind of low, but not too bad. His other blood tests were ok, but they one he got today (about 3 weeks after his Vidaza) show his platelet count went up high, about 1 million. He had ben on hydrea for 6 years which kept his count good, but has been off for a month or so (sine he started Vidaza). Now, I know having high platelets isn't good, but I think it's better than too low? The hydrea has controlled it in the past, so he told him to start taking it again. Everything I have read about MDS speaks of low platelet (and other) counts. I don't think anyone has high counts and have MDS, I think that is considered MPD, right? I am wondering if he will continue the Vidaza if the hydrea brings the platelets back down. Has anyone been on both Vidaza and Hydrea at the same time?

Again, I'm not questioning anything. Anyhow, my Dad has felt pretty good for the past two weeks. Today he really did a lot of physical activity, especially for a guy almost 78. He was getting minor night sweats, but they seem to have gone away (maybe it was the pomagrane juice?). He has a doctors appointment in a week and is scheduled for another round of Vidaza in a week as well. I guess I am just confused. I don't think the Vidaza can work that fast? Right now, he is back to where he was for the past six years..........platelets high, everything else ok. The hydrea controlled it in the past, so to me that's good news.

I appreciate any insight anyone might have...........thanks!!

[run4peach1]

Yesterday, my Dad's platelet count went sky high, reaching almost 2 million. He never felt bad or anything, in fat he felt pretty good. They had a maching remove some of his platelets, and they got it down to 1.4 million, still not good but better. I imagine he'll have to get back on the machine today. He is back on the hydrea, and hopefully it will keep it incheck like it did for 5 years. Maybe I am in the wrong forum, because I talked to a hematologist that was watching my Dad get the platelets removed and he told me he is considered a MPD patient, although sometimes some of the criteria of MPD and MDS cross over. He felt confident that the hydrea would work again after some time. I am still wondering if they will continue the vidaza treatments. His doctor had no idea why this spike occured and said he's never seen anything like it before.

Anyhow, it seems like if they can control the platelets, maybe he'll just go back like he was before, on hydrea. His other counts were ok, at the low end of normal for white cells, and slightly low in the red cells. I am still confused, but I guess this is just something that you have to wait and see how it all plays out.

Has anyone experienced anything like this? Has anyone taken hydrea for high platelet counts as well as been on vidaza? Thank you.

[run4peach1]

I was hoping to give a little update and get a little insight from someone. My Dad got one set of treatments of Vidaza. Got weak, needed a transfusion. Near the end of the first cycle, his platelets shot up to 2 million or more. He has had the high platelet problem for 6 or 7 years, but now the doc has dxed him with some traits of MDS, this the Vidaza. Back on hydrea and/or agrilyn to lower the platelets, which went down after a while. He then starts on dacogen, apparently because of the platelet response to Vidaza. First dacogen cycle uneventful, counts pretty good. Near the end of the cycle, platelets thru the roof again, 2 million. Back on heavy hydrea and agrilyn. Gets second cycle of dacogen, went fine, but now his plateles are around 20,000. The doctor said he has never seen such a swing in platelets. Today my Dad is getting platelets, and depending upon his count tomorrow (hemoglobin at 8.9, whites kind of low too) he will get a transfusion.

He is really weak today, has the chills, looks pale, etc. I know this is what happens when you get a chemo drug like dacogen, but can someone share their experiences with the chemo stuff? I hope that is what is causing this and that the treatments get thru they will do him some good.

[Birgitta-A]

Hi run4peach1,
Here is an article about RARS and Thrombocytosis (high platelet count) called RARS with marked thrombocytosis (RARS-T). The article is quite complicated – you perhaps could start reading at page 57 (the article starts at page 52) where the authors write: “There is no reason to believe that treatment of very high platelet counts in RARS-T should differ from that of ET. Thus, the available evidence is insufficient for recommending any specific treatment.”
http://asheducationbook.hematologyli.../2008/1/52.pdf

I wonder if they have tried to treat your fathers anemia with EPO – you know EPO has best effect if the serum-EPO is low (less than 500) when the anemia is diagnosed. It seems to be very difficult to give Vidaza or Dacogen to your father with his swinging platelet counts.
Kind regards and hopefully a Peaceful New Year
Birgitta-A
Dx myelofibrosis (a MPD) May 2006-Aug 2007. Since then dx MDS Interm-1.

[run4peach1]

Sorry to say my Dad's counts have just about completely crashed. Yesterday his platelets were 3000, went up to 8000 after they gave hime some. White count at 0.2. Hemoglobin in the 7s. We have to wear a mask and gown when we go in the room (they fear he'll catch something with such little immunity). He is weak of course. I have a hard time staing in the room.

I guess the good thing is that his hemotologist told me he blames this on the dacogen, in combination with the high amounts of hydrea and agrilyn (he was taking 7 pills a day to keep his platelets down). I dunno, but his hemoglobins actually dropped a bit when the gave him blood yesterday. He got another bag of platelets yesterday and 2 more untios of blood last night. He is getting a daily shot of nuprogen (white cells) to boost that. My worry is that, while it's only been a day or two, his counts aren't responding. It's as if his marrow has totally shut down. I hope it's the effects of the chemo drugs, but, needless to say I am very worried. I hope to find out more today, but I guess all we can do and wait and pray that his counts go up through the transfusions, and better yet on their own.

I don't think he'll be taking any kind of drugs for a while. Thanks to everyone for your thoughts and kind words. May the New Year give you Peace and strength to deal with your struggles.

You are all in my prayers.

[run4peach1]

I just got back from the hospital, and I got some good news. His counts have started to respond. His platelets went from 8000 to 40000 (I don' think one bag of platelets would have brought them up that much, so it's my hope he is making his own as well), hemoglobin up to 9.2 from the mid 7's, but his whites are still very low, but went up from 0.2 to 0.6. He did have a fever as well, but it's down now, 99.1 without tylenol assistance. He looks 100% better than yesterday and is concerned with his appearance, wants to wash, brush his teeth and comb his hair, so that's a good sign.

Has anyone ever experienced such a crash from dacogen or even vidaza?

Thank you all for your support. Again, may this be a Happy, Healthy, and Peaceful New Year for everyone.

[run4peach1]

My father has been home from the hospital for four of five days. I'd like some opinions on this:

Ten days ago his platelets were down to 2000, whites down to 0.2. Blamed on a combination of dacogen, hydrea, and agrilyn (the latter two used to control his MPD, high platelets.

OK, ten days later, his platelets went from 2000 to 2 million. For 6 years my Dad was on hydrea for MPD. His doc saw something in a BMB that lent his to believe MDS was present and started Vidaza. After one round, he saw something else that led him to two rounds of dacogen, which landed him in the hospital.

I don't doubt the doc, but I am starting to think about a second opinion. For those 6 years, his hemoglobins were at least 10-11, is whites ok, and platelets kept in line with hydrea. Is it possible that another doc could look at the BMB and determine maybe this isn't the right course? The only thing I saw was on a CBC was blasts 2%,, and I didn't know you could get that info from a CBC. My Dad never needed a transfusion prior to chemo, but has had a total of 5 units (I think) during the 3 treatments. I think this doctor is aggresive, which is good, I just fear that he's gonna want to do another round of dacogen, and I'm not sure if that's what best for my Dad, both physically and mentally.

I've become somewhat better educated in this area, and haven't heard of one person that has such high platelets and MDS. I may have read one time that it's possible but extremely rare. Is it possible to have your marrow make bad red cells and tons of platelets? Has anyone heard of this?

Thoughts and prayers for you all.

[Ruth Cuadra]

run4peach1,

It is always advisable to get a second opinion when dealing with a serious medical condition such as your father has. The rapid swings in his platelet count and recent instability of his hemoglobin are certainly unusual, but don't necessarily mean that the MDS diagnosis is wrong--only that it should be questioned. MDS has been known to co-exist with other diseases.

I think you are fairly close to two Centers of Excellence in the treatment of MDS: the University of Pittsburgh Cancer Center and The Western Pennsylvania Cancer Institute. Either one should be able to give you valuable insights into your father's condition and help you evaluate treatment options. You might also consider going to NIH in Bethesda, if it's not too far.

It sounds like you father will need some time to recover before any further treatments can take place. I hope you can use that time to arrange a second (or even a third) opinion.

Regards,
Ruth Cuadra

[Donna E]

Hi there . . . my name is Donna and my Dad has been fighting MDS for so many years now. When he was first diagnosed I was worried about him being there for my wedding, for grandchildren, etc. Well he lived to see me get married, and saw the birth of my two children who are now 7 and 5. His disease was managed successfully for many years with Progrit and Neupogen. Over the last few years he grew allergic to Neupogen and now has very low white blood counts and platelets. We have almost lost him many times to pnemonia, he fought his way through Legionnaires, TB and now is suffering from skin wounds . . . at first it was very hard to diagnose but we finally found out it was Impetago (sp?). This has been a constant problem where my mom has had to treat wounds all over his body only to have them heal and pop up somewhere else. He now needs to have transfusions every week usually. I am not telling you all of this to scare you. I am telling you all of this so you know the different things that can come up and so that you can start working on becomming strong for him. My Dad just saw another birthday on St. Patrick's Day. He is 72 and has been fighting over 11 years . . . maybe more . . . The word that sums up my Dad is COURAGE and LOVE. I do believe he loves my mom and us kids and grandkids so much he does not want to leave us. It makes me sad to see that he is suffering so much now with these wounds. He cries alot because he knows what my mom goes through taking care of him . . . He is my HERO. I was with my Dad today and know now I have to help my mom consistently at least one day a week to give her a break. It is hard because I have two little ones and am the supporter of my family. What is so important is that your Dad has a loving and caring daughter who will journey through this all together with him. Don't give up HOPE. I never thought my Dad was going to be here with us this long. I have learned that if someone has love, that is the BEST medicine in the world. Your Dad has that in you. This disease is one we all need to work hard at finding a cure for. We need to make people aware of it. Please know that your family will be in my prayers. I am a true blue Daddy's girl and it hurts me so to see my Dad go through this. I was telling my children tonight on the way home how I miss his bear hugs. I can no longer hug his body with wounds all over it . . . I am always afraid I am going to bring him some germ he can't fight. What I will tell you to do is always get your flu shots for him and wash your hands frequently when you are with him. Love him, protect him and just be there like you are. Know that daughters like me are there to support you. This forum has lots of people who can be there for you. Make God your #1 friend in all of this and he will help you to be strong.
Love from New Jersey . . . Donna

[netsirk]

run4peach..
we have not heard from you in months..
please update.
been thinking of you.

[run4peach1]

My Dad was doing very well for months. His hemoglobins actually got to 11.1 which was very good for him. A couple of weeks ago he started feeling poorly, counts dropped, WBC went up. Caught pnuemonia. Three days in the hospital, he fought it well. Today he went to the doc, and his counts were still very low. They don't seem to think it's from the pnuemonia (can that make hemoglobins low?). His platelets are 72, which is low for him. For years he has been on medication for HIGH platelet counts as well. He is getting transfused (2 units) as I type this, meaning his hemoglobins must have been in the 7s (my mom couldn't remember).

Bone marrow biopsy scheduled in 4 days then I guess they'll decide the next step. He had one round of vidaza and two rounds of dacogen (which landed him in the hospital) but he recovered nicely and was fine for 5 months. Could the chemo have worked that fast on him, or did he just rebound on his own.

This is the first transfusion in 5 months. He has had about 5 or 6 bags total, so I guess you have to start worrying about iron overload.

I guess this can't be from the pnuemonia. You hate to hope for that, but it's better than the alternative I guess. I imagine they'll want to try the chemo again in a couple of weeks. He is really down right now.

Thanks for thinking of me. I pray for you all every day.

[Birgitta-A]

Hi run4peach,
You know there are MDS patients with very high platelets and there is no special treatment for them. Very good that your dad recovered so well after low counts in connection with Vidaza and Dacogen! I don't think anyone can answer if the improvement was because he got the drugs or if he recovered on his own.

I think severe infections can give low counts during very long time - when I had neutropenic fever my counts got very low and my white blood cells never improved so I had to start with Neupogen.

You don't have to think about iron overload until the ferritin value is more than 1000 - the patients often get 25 units of packed red blood cells before they start with chelating agents. You have to look at the liver tests too and many doctors wait till they get a little elevated. I had got 40 units of blood when I started with Desferal.

Hope his bone marrow biopsy will show the same picture as when he got his dx without any signs of increased blast cells or fibrosis!
Kind regards
Birgitta-A