New here, husband has MDS

[Mac]

Hello, My husband was diagnosed in 2008 with MDS. The hematologist couldn't be sure how long he had it so I went back to 2006 when he had a hernia surgery and found his blood work. He already had it then, but it was never reported. He has always had very good health, atleast he felt well, but they can't be sure how long he has had MDS. I have been reading many posts on here and it seems that most of the people with MDS have low platelet counts. My husbands are always very high. The last one was 1097, which is over a million. Usually when it goes that high they put him on Hydroxyurea and then his HGB drops down so far he has to have transfusions. If he would not have had the bloodwork to begin with we would have never known there was anything wrong. Obviously when his HGB goes down he gets tired, but that is about the only problem he has. He also has Myeloproliferative syndrome (MPS) so as his platelets drop so does his HGB. I guess if you have to have MDS, he is fortunate to have the one he has. The hematologists have difficulty because of the two disorders go against one another, since his blood seems to be fighting itself. The medications which should help him cause him much more trouble in other ways. He has decided he doesn't want to do anything, but take the baby aspirin, hawthorn berry , multiple vitamin and a grapefruit every day. Sorry this is so long , but when the Dr's can't tell you anything it helps to talk with people who know what you are going through. My husband is 66 years old. Thank you for listening.

[milliken2]

Hello Mac;
And welcome to the Forum. You will find out that there are many people here with LOTS of information to share or send you in a direction that you might need to look. Yes - many of us here have had a very long journey - and I am so hoping that my journey with Earl will continue. He, too, is 66.
Just as an aside - is your husband taking any Vitamin D or Vitamin K?
Some on here say they seem to help raise the platelet level - but it cartainly hasn't worked in Earl's case. He had a blood draw yesterday, and his platelets were only 19,000. But that is a HUGE improvement - since when he was hospitalized a week ago Wednesday - they were only 3,000. Of course - another thing that you need to watch is his iron level. You don't wany iron overload as if that continues too long, it may cause either liver or kidney damage. And needless to day - check with your Doctor before using any supplements.
I wish you and your husband much luck in this arduous journey.

Beth

[riccd2001]

Originally Posted by Mac

Hello,... The medications which should help him cause him much more trouble in other ways. He has decided he doesn't want to do anything, but take the baby aspirin, hawthorn berry , multiple vitamin and a grapefruit every day. Sorry this is so long , but when the Dr's can't tell you anything it helps to talk with people who know what you are going through. My husband is 66 years old. Thank you for listening.

Besides Serum Ferritin you need to keep a close eye on Creatinine levels when fighting iron overloads. Of course YMMV, but a big "NO" because of drug interactions to grapefruit in any form; do your own search please.

[Sally C]

Hi Mac,
I really want to second what what riccd2001 said about grapefruit juice. There was a news article recently about grapefruit and meds - and that there are 80+meds and counting that are affected by grapefruit juice.
I heard an interview with a doctor about it on the radio and the question was asked why grapefruit and not other citrus juices. And this may be of interest to others on the forums - she said she would limit or avoid all citrus juices if on any medications just to be safe.
I wish you well.
God Bless,
Sally

[Lori Patrick]

Mac, You need to have your husband checked out by a good blood cancer doctor. You need to have questions ready so that you two know exactly what he has and what their goal is. There are too many hospitals with outstanding doctors with knowledge in this area to be in the "not knowing" mode you are in. Best of luck to you and your husband.

[Mac]

Thanks for all of the answers, I appreciate them. As I said he takes an 81 mg aspirin the vitamins and grapefruit at this time. He hasn't been on the Hydrea for over a year. Did it say anything about the grapefruit juice with aspirin? I know they say grapefruit can thin the blood, but in my husbands case that is what we want. I can't find any info about interactions with grapefruit juice and OTC meds. Since he has been on the vitamins, ASA and grapefruit juice he has been pretty stable. His platelets are usualy at 600,000 to 800,000. The Dr's are fine with these numbers when they are under 1.2 million. We have been to the Cleveland Clinic, the Dr. there who we both liked and trusted told us my husband would more than likely die of something else before he died from the MDS. The one in Pittsburg, PA who is an expert on MDS said he agreed with the Cleveland Clinic Dr. I believe his platelet count jumped because he had a large cyst , nothing to do with the MDS, removed last month and it seems that after he has any kind of surgery no matter how small, his platelets go sky high. Of course that is what platelets do when we are injured they go to that area to clot it. His problem is he makes too many platelets and they do not mature, therefore we have to keep close watch on his spleen since it is enlarged. We also watch his iron level and hope his test results are stable on Monday when they do his blood work.

[DanL]

Mac,

Just looking at the symptoms - proliferation of platelets and enlarged spleen, i would be surprised if your husband's diagnosis isn't primary myelofibrosis. Although there are similarities, PMF is more commonly associated with these symptoms. Has he been tested for Jak2? If he has this, there are a couple of drugs being used that have been very effective at both managing platelets and spleen size.

As noted by previous people, knowing for sure what the diagnosis is would be helpful in assessing the treatment options going forward.

[Mac]

Dan, the molecular studies dx from a bone marrow , PIC aspiration was positive for Jak2 V617F Mutation. comprehensive dx Myelodysplastic syndrome/Myeloproliferative disorder. Any help you can give would be so appreciated.

[Mac]

I have been researching PMF and hubby does have the enlarged spleen, elevated platelets, but his RBC's are low usually around 3.8. I will keep looking. Thanks

[slip up 2]

Mac....there is a drug JAKAVI that is for myelofibrosis...my husband had both first was diag. with MDS...then myelofibrosis....it is not unusual to have both diag. There are a few articles on the combination on The MDS Beacon...

[gramous]

hi mac,

my boyfriend has also RARS-T of refractory anemia with ring sideroblast and thrombocytosis... He has also jak 2 mutation.... So for platelets management, He used hydrea (hydroxuree) once a day but their red cells dropped and this dosage wasn't effective for hem... Now, He takes anagrelidesince 1month 1/2 but at this times that doesn't work (1300 for platelets so 1 million 3 hundred)...his hemo is at 11,5 and white normals....
What are your husband's numbers?
other therapies for platelets reducing are interferon pegyle alpha, busulfan, radioactif phopor 32... but try at first time anagrelide (doesn't cause anemia)....
my boyfriend is 54.
béné

[Sjrm]

Husband diagnosed with RARS-t with JAK2 positive and 5q deletion. Right now taking Hydroxyurea for high platelets but needed 3 unit RBC transfusion for worsening anemia due to Hydroxyurea. Hemeonc will be starting h on Revlimid in the next few weeks. Is there anyone here with experience with this disease and treatment regimen? Many thanks in advance!

[gramous]

hello,

how many platelets has your husband? and how deep is his anemia? My boyfriend has also rars-t with jak 2 positive and take one hydrea a day... your husband can also try xagrid (anagrelide) ...this drugs works on the platelets count onlu and not on the red blood cell.... take care. béné