Please help- MOM VERY SICK

[Bluyz1966]

Hello to all who participate. My Mom was diagnosed with MDS a couple of months ago. She started Vidaza on May 15. Sunday night we went to the ER for a swelling in her neck and her platelets were only 5. They gave her 4 units of platelets and they stayed at 5. She has been in the hospital for 4 days and her platlet count is still at 5. Her doc has not given her any more transfusions, but, has started her on neumega for platelet production. She has also had a mean rash since these symptoms all started. Has anyone every seen someone be sent home with a PLT count of only 5? Has anyone ever heard of a rash with MDS? Please help. I don’t know what to do. I don’t want to wish I had gotten this information sooner for her. Thank you to all who reply.

Linda Dolezan
Benton Harbor, MI

Mom 67 MDS

[lillian1919]

HI Linda
My Mum had the peticiae – the purple rash – on her legs. It actually did clear up tho.She was given antibiotics as they thought it might be cellulitis too. This happened after her first transfusions. She is not very well now , was on Anaresp injections but they did not work and she feels she is too old to start chemo. Vidaza was one of the drugs the MD talked about but he does not any longer. My mother has low red, white and platelets.

[jfensterer]

Linda,

Yes, my Mom did get to 5 at some points. You do really need to remember. As long as you are doing everything you can….that is all you can do. But your Mom knows you are there for her and she’ll probably never have all of the words to thank you. This disease is a rough one. Just do the best you can…..your Mom & God will know this.

I have to tell you, even though Mom’s bruises did not hurt her…..they were worse on my eyes just looking at them-
I’ll say a prayer for you and your Mom.
Warm Regards-Jan

[Bluyz1966]

Thank you so much for the beautiful messages.

Jan, I am sorry for your loss. My biggest fear is loosing my Mom. I am not ready for this, but, I guess no one is. I think it hurts me more to see her so scared about this. She shakes uncontrollably at times. I will keep my eye on this message board. It has been the most informative so far and I really appreciate it.
Linda

[Russ P.]

Linda, I don’t know anything about the Hematologists in Benton Harbor but you are not far from the Michiana Hematology/Oncolgy Clinic in South Bend. I see Dr. Tabor there and he is a fine caring doctor. Unfortunately MDS is so different from case to case. Has your mom had a BMB? You may want to consult with a specialist in MDS at one of the teaching hospitals.
Best wishes,
Russ

[Bluyz1966]

Hi Russ. (Neighbor)…I actually see Dr. Zon at Michiana Hem/Onc. I am a breast cancer survivor as of last year.

Our next step if the Neumega does not work is to head to University of Chicago. I know a lot about teaching hospitals as that is where my 2 year old son was treated for his MDS which went into AML. My son was at Children’s Memorial Hospital in Chicago being treated while I was in South Bend being treated. I have a lot of cancer and blood count knowledge. That is why I am so nervous about this platelet thing.

My Mom had a BMB and the pathologists at Mayo Clinic dx her.

Thanks for your post. Keep in touch!
Linda

[willie]

Linda The large rash you see could possibly be Sweet’s Syndrome – often a precursor to MDS. Thinking of the both of you.
Willie

[Bluyz1966]

Hi Willie. I asked about the Sweets Syndrome. Have you ever seen it with out a fever? The doc was quick to say it wasn’t that when I asked him about the possibility.

Mom is due for another BMB this morning. The doc wants to see if she is making her own platelets and destroying them, or if she isn’t making them at all.

There is a big family history of ITP in my Mom’s family. Anyone seen that secondary to MDS?

I give the doc till Thursday to tell us what is going on. Then I will insist they get her to University of Chicago.

Her platelets dropped to 4 yesterday.

Linda

[willie]

Linda My wife had intense heating of the Sweet’s spots. She is the only persom with whom I am familiar. Willie

[Bluyz1966]

They sent Mom home this morning. Platelets still 5. We should know the results of the BMB by Friday. I can’t help but wonder is she being sent home to die? I just can’t believe there isn’t more that can be done for her platelets before sending her home. She wasn’t home 5 minutes and cut her finger opening a can of cat food for her kitties. Took 30 minutes to get it to stop bleeding and it was only a nick.

I would love to take my Mom to the convention in Vegas in August. That is my goal right now. I am setting a little money aside thinking positive.

Linda

Mom, 67. DX May 2007 MDS. 1 Round Vidaza, stopped due to no platlet production or transfusion acceptance. Started Neumega 6/15/07.

[marlene]

Hi Linda,

I guess I’m confused as to why they have stopped giving platelet transfusion. So I’ll just thow out a couple of thoughts/considerations.

1 – If she had a fever during this time, the fever will use up the platelets. So she may not be refractory.

2 – She may need them to do a “match” platelet product versus getting whatever is on the shelf. You can call a blood bank/service and ask to talk to someone about platelet products. When John was in Hopkins, they worked really hard to get him platelets that would work for him. When we came home, we found that some platelets worked really well and other did not. Another person we know with AA actually was not getting any bumps from her transfusions. So she asked found 8 people (friends/family) who’s platelets were more compatible for her based on the matching. They became her personal donors for platelets.

3 – Are her blood products being filtered and irradiated? They should be as fresh as possible. You really don’t want a bag that is going to expire that day. Your doc can write orders requesting that.

4 – Even when John’s platelets were at 5 – 8K, he would stop bleeding within 15 minutes on small cuts etc. Many can tolerate 5K. We would use Knox geletin to assist his clotting. I would mix some up with juice for him to drink. It has clotting factors which helped him with bleeding gums. Green leafy vegetable have vitamin K which is needed by the liver for clotting.

5 – Finally, they should check her clotting times. You need to have more than platelets for your blood to clot.

Marlene

[Ira N.]

Hi Linda,

I had an intense rash over most of my body when I was diagnosed with MDS in November 07. It started on my neck & head & spread all over my body.It was like purpleish spots all over. It looked so horrible.I saw people move away from me in the super market. No one I saw including a Dermatologist knew what it was, but after 3 months it went away during my first round of chemo. I am doing a clinical trial which is a combination of Vidaza and Vorinistat (also called SAHA). I have just completed my 5th cycle and my Dr. says I had a “complete response” to the chemo. All of my CBC counts are now in the normal range from HGB 6, Platelets 20, WBC 1.2 when I started in January. Also I have not had a transfusion in over 2 months. I was having tx every week!

————-
Ira, 49 dx 11/06 MDS, Completed 5 rounds clinical trial – Vidaza + Vorinistat 6/07. Had “complete response”.

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