Dad has MDS, has anyone experienced this skin problem?

[Donna E]

Hi, I am new to the site and THANK GOD someone has put this together for us. My father has MDS and has been fighting it for years successfully with drugs. He is now on Vidaza and has been experiencing awful skin problems, itching, rashes and currently his feet and hands are very painful with black large, painful scabs coming out on his skin. No one seems to know what it is or what is causing it. It is painful for him to put shoes on and walk and his hands are swollen and red with think large black scabs. Has anyone out there experienced this? Has anyone also had luck with Vidaza? We are still waiting for good results. He currently seems to be transfusion dependent.
Thanks to anyone who can respond and God bless everyone living with this disease and caring for someone with it. Keep HOPEFUL . . .

[ESeda]

Hi Donna E, and Welcome to this forum. Lots of smart helpful people here.

My wife Nellie recently completed her second cycle on Vidaza, and we are very happy with the results, so far. It is said that it takes 4-6 months to show signs of working, but it can work sooner. Not knowing your dad's history it's hard for me to compare with my wife. However, I pray the Vidazaa works as well on your dad.

My wife has shown some minor skin rashes and occasional light sweats. In addition she has had sever drop in her WBC count <0.7 which has us worried. At the start of her treatment her CBC dropped, but soon after the second cycle was started, the counts of red and plts went up significantly.

Once again, welcome and I hope I help put your mind at ease. Best wishes for you and yours..

Eli

[Donna E]

Hi Eli,

Thanks so much for your reply!

God bless you and your wife. My Dad had a boost in everything but then it keeps going down. The skin rashes are awful. Do you know if there is a way to take a photo of something so folks can see it and can write in if they have experienced it? I do see an insert image on this so maybe that will work. We are thinking of taking a photo with a digital camera and posting it so someone may know what is wrong. They are doing complete blood work on him to check everything in the blood. His counts are very low. I will see if I can get that info as well. He is going today for a transfusion. I am very active in promoting cord blood banking when people have babies ever since my Dad has become ill with MDS. Please feel free to check that out and promote it to folks you know so everyone having babies can take advantage of their child's stem cells as they are able to treat MDS with these cells. That site is www.cordofhope.com. Again thanks so much for your support!! I hope you can feel mine. We will keep you and your wife in our prayers as I do believe in their powers!!

[Neil Cuadra]

Originally Posted by Donna E

Do you know if there is a way to take a photo of something so folks can see it and can write in if they have experienced it? I do see an insert image on this so maybe that will work. We are thinking of taking a photo with a digital camera and posting it so someone may know what is wrong.

If you have a digital photo on your computer, here's how to attach it to a Marrowforums post:

1. Click Post Reply.
2. Type a message as usual but don't click Submit Reply yet.
3. Click Manage Attachments in the "Additional Options" section below your message. A "Manage Attachments" window will open.
4. Click the first Choose File button.
5. Navigate to the file on your computer and click Choose.
6. Click the first Upload button and wait while it says Uploading File(s) - Please Wait. The smaller the image, the faster it will upload. The forum system scales images so they are at most 800x600 pixels and at most 100K bytes.
7. Click Close this window.
8. Click Preview Post and see if your message looks OK. If not, fix it and repeat this step.
9. Click Submit Reply.

Your message in the forum should have the image below it, shown as a thumbnail (small size) image. Clicking the thumbnail displays the full-size image.

[Birgitta-A]

Hi Donna,
As far as I understand skin symptoms are quite common when you take Vidaza. Here are some adverse reactions: petechiae (small skin bleedings) 24%; skin lesion 15%; rash 14%; pruritus (itching) 12%; hematoma (bruising) 9% and urticaria (hives) 6%. If your father has very low platelets (less than 30) all kinds of bleeding in the skin can be very dark.

When a patient no longer is responding to Vidaza and has severe adverse reactions he/she perhaps shouldn´t continue with this drug .
Kind regards
Birgitta-A
69 yo, dx MDS Interm-1 May 2006, transfusion dependent, Desferal for iron overload, Neupogen for low white blood cells, asymptomatic

[Donna E]

Birgitta,

Thanks so much for your support. We are taking him to other doctors to have it looked at because his blood doctors who treat many MDS patients do not know what it is . . .
Sometimes it appears the Vidaza is working and other times it does not.

Have you taken Vidaza? We are wondering how long it will take to notice lasting results and we also are wondering if this drug will eventually help him from having to get transfusions. Is this the drug you are taking?

Again, thanks for being there to support my family through this illness.
My Dad is our treasure and we want to do everything we can for him right now.

Love,
Donna

[ESeda]

Hi Donna E

As you can see Neil is the expert on this site. He has the info you need to post your pics and give great advice on matters concerning MDS.

I definately will help to promote the web site you recommended. Large number of cord blood donations would be a God send. Keep up the good work.

I spoke to my wife about the rash she has, and she described it in the same way you described your dad's problem. Except her's is a vary minor rash that she treated right away with Fluocinonide Cream USP 0.05%. Nellie has Lupus and often has skin irritations that she treats with this cream.. We don't know if the cream improved the symptom or not, but it seemed to help. It has been two weeks since she ended her second round of Vidaaza so it may also be that she just had some time to heal. We will watch again for symptoms when she starts her Vidaza again. Hope this helps.

Looking forward to your post with pictures.. God Bless.

Eli

[Birgitta-A]

Hi Donna,
Too bad that the reseachers not yet know much about what drug is working with a special patient.

Here is some info about Vidaza:
http://www.vidaza.com/1100-vidaza-treatment.aspx

I am so afraid of bleedings due to low platelets that I dare not take Vidaza or any other drug that may decrease platelets. I have been hoping that the new drugs for low platelets should be approved but due to adverse reactions they will probably only be given to patients that have low platelets but not a bone marrow disease.
Kind regards
Birgitta-A

[Donna E]

Originally Posted by ESeda

Hi Donna E

As you can see Neil is the expert on this site. He has the info you need to post your pics and give great advice on matters concerning MDS.

I definately will help to promote the web site you recommended. Large number of cord blood donations would be a God send. Keep up the good work.

I spoke to my wife about the rash she has, and she described it in the same way you described your dad's problem. Except her's is a vary minor rash that she treated right away with Fluocinonide Cream USP 0.05%. Nellie has Lupus and often has skin irritations that she treats with this cream.. We don't know if the cream improved the symptom or not, but it seemed to help. It has been two weeks since she ended her second round of Vidaaza so it may also be that she just had some time to heal. We will watch again for symptoms when she starts her Vidaza again. Hope this helps.

Looking forward to your post with pictures.. God Bless.

Eli

Hi Eli,

Nellie is one lucky woman!! You sound like a great husband. My mom is terrific with my Dad too. I have been sooooo proud of her and the way she takes care of him. I want to clarify that the site www.cordofhope.com is to encourage new parents to privately bank their child's cord blood for their child so that years from now if a child gets one of 70 different illnesses, including MDS, they will have a good way to treat it. I also definitely encourage parents to donate the umbilical stem cells as well, rather than do nothing with them. It is such a waste for people to have babies and dispose of these special stem cells. I am trying so hard to educate expectant parents about this valuable resource. One day the hope is that there will be a way to take the small amount of cells banked and multiply them for more uses and for a larger person. I appreciate you telling new expectant parents about this site and for all the support you give to this forum. I just found it and am soooo happy because I find I have something positive to do with my feelings of frustration . . . I will let me parents know about this skin medicine. Thanks Eli . . . hug your wife for me! -- Donna

[Donna E]

Just wanted to update everyone that my Dad will undergo a biopsy of the lesions to see what they are. It is thought it might be a fungus or bacterial infection on his skin. He will have platelets before the procedure.
For now he will be coming off of Procrit because he noticed after his last shot that he got very itchy and we are going to see if the Procrit is causing his other skin rashes and itchiness . . . Will keep everyone posted because I believe we can all learn from one another with this illness . . .

[Donna E]

Hi Everyone,

Dad is still in the hospital. It seems the skin problems were some type of Staph infection and they mentioned something called Impintago (spelling??).
He has been having horrible reactions now to Nupegin (spelling?) and the other day they had a crash cart and about 12 people in his room because his blood pressure goes down real low, he has bad chest pains and breaks out into a cold clammy sweat . . . We are now panicking because we don't know what they will give him now to increase white blood cells . . . Has this happened to anyone out there and if so, what did you then get put on?
He has a sign now outside is room that say Neupogenic . . . no flowers, fruit etc. can be brought into the room . . .
He is very sick so please if you believe in prayer . . . pray for us . . .

Love you all . . .
Donna E.

[Neil Cuadra]

Donna,

You have our continued best wishes. It must be so hard to watch your dad go through this.

Impetigo is a contagious skin condition, in your dad's case caused by the staph bacteria. It's more common in children because of the cuts and scrapes they routinely get, but is of course a risk to an adult with a compromised immune system.

Given your dad's low white count, the precautions about flowers and fruit are wise, to avoid potential sources of infection. They probably have him on a low bacteria diet, also called a neutropenic diet, for the same reason.

The white cell growth factor is spelled "Neupogen" and is also known as filgrastim. You can read basic information about it here and more detailed information here.

[sophia68]

Originally Posted by Donna E

Hi Everyone,

Dad is still in the hospital. It seems the skin problems were some type of Staph infection and they mentioned something called Impintago (spelling??).
He has been having horrible reactions now to Nupegin (spelling?) and the other day they had a crash cart and about 12 people in his room because his blood pressure goes down real low, he has bad chest pains and breaks out into a cold clammy sweat . . . We are now panicking because we don't know what they will give him now to increase white blood cells . . . Has this happened to anyone out there and if so, what did you then get put on?
He has a sign now outside is room that say Neupogenic . . . no flowers, fruit etc. can be brought into the room . . .
He is very sick so please if you believe in prayer . . . pray for us . . .

Love you all . . .
Donna E.

Hi Donna,

Sorry to hear about your dad. My dad is also currently in the hospital for neutropenia/low bacteria diet, etc., since last week Wednesday. He's having a rough time. He's been on antiobiotics. Blood cultures returned negative for any bacterial growth. Even though he does not have an infection, he is still spiking low grade fevers. His WBC count 1.0. He's having difficulty breathing, is very congested, swollen ankles, hard of hearing. A series of tests are being done today, more chest xrays, scan of his legs and CT scan of his nasal area. He has mouth ulcers/sore throat too. It seems sinusitis/bronchitis/pneumonia are all possible side effects of treatment. Needless to say, after only one treatment with Dacogen, he has decided not to have anymore, he does not want to go through this again.

[Donna E]

Hi Sophia,

Wow, it sounds like our Dads are going through the same thing. My Dad is also very congested and his feet are swollen. His feet and hands are wrapped. His white blood cell count is very low and he cannot heal without a boost in them. He is not ready to give up, he still wants to fight this disease but I just don't know what he is supposed to fight it with . . .
I am exhausted and feel sick to my stomach. I pray we all have strength to get through this. My Dad is our Rock . . . the center of all of our joy . . . He has fought this disease with such tenacity and courage.
Please feel my hug across the miles and know my heart is with you during this difficult time. My prayers are with you and your family. Please keep me updated . . . I want to be there for you, even if it is just through this most valuable web site.

Love,
Donna E

[Donna E]

Originally Posted by Neil Cuadra

Donna,

You have our continued best wishes. It must be so hard to watch your dad go through this.

Impetigo is a contagious skin condition, in your dad's case caused by the staph bacteria. It's more common in children because of the cuts and scrapes they routinely get, but is of course a risk to an adult with a compromised immune system.

Given your dad's low white count, the precautions about flowers and fruit are wise, to avoid potential sources of infection. They probably have him on a low bacteria diet, also called a neutropenic diet, for the same reason.

The white cell growth factor is spelled "Neupogen" and is also known as filgrastim. You can read basic information about it here and more detailed information here.

Neil, I can't tell you how much I appreciate this site and all the support I feel from you and these precious people. Please hug your wife and all of the special people who make this possible. Thank you from the bottom of my heart. -- Donna E.

[sophia68]

Originally Posted by Donna E

Hi Sophia,

Wow, it sounds like our Dads are going through the same thing. My Dad is also very congested and his feet are swollen. His feet and hands are wrapped. His white blood cell count is very low and he cannot heal without a boost in them. He is not ready to give up, he still wants to fight this disease but I just don't know what he is supposed to fight it with . . .
I am exhausted and feel sick to my stomach. I pray we all have strength to get through this. My Dad is our Rock . . . the center of all of our joy . . . He has fought this disease with such tenacity and courage.
Please feel my hug across the miles and know my heart is with you during this difficult time. My prayers are with you and your family. Please keep me updated . . . I want to be there for you, even if it is just through this most valuable web site.

Love,
Donna E

Hi Donna,

Thank you so much for your love and support...I am here for you also. This site is such a blessing for victims of this horrible disease. I have learned so much through the experiences and knowledge of everyone posting on this site and am very grateful for the support.

For all of my dad's 80 years of life he has been a very independent. He had a rough beginning in life, pretty much abandoned by his parents and as a result, has always carried a bitterness/resentment around with him. (Always grumbling about one thing or another.) He loves his children (there are 9 of us - I'm the youngest of my siblings) and my mum very much but doesn't show it in a physical/affectionate way. He was a very active person who took pride in keeping up his house, mowing his lawn and "fixing" just about anything electrical and around the hosue. (He's an electrician by trade.) He used to have this table set up outside the front of his house under the patio where he would "fix" things, wires/screws and all the electrical bits n pieces he needed were strewn all over the table....bits n pieces he's had in his possession for years and years....(never liked to throw away anything!) That was "his" time. Now that space is bare as he doesn't have the energy to fix anymore and his new lawn mower parked. It breaks my heart to see him feel so helpless.

My dad was also diagnosed with rheumatoid arthritis (RA) about 10 years ago and was being treated with prednisone and methotrexate for many years. I have a feeling the methotrexate is what contributed to him developing the MDS. He is currently being treated with an IV infusion of Orencia for the RA. Unfortunately, my mum was also diagnosed with RA recently, and although also prescribed prednisone and methotrexate, refuses to take the methotrexate in fear she'll develop MDS too. Mum is also having issues with her blood and now they accompany each other to see the same specialists!

We know as our parents age or anyone ages, health deteriorates and spirals downward but it's so very hard to watch the decline and to have to face or deal with the inevitable....it's just horrible. If only we could stop the hands of time!

Anyway, dad is still in the hospital. He's on Bactrim and vancomycin. Still feeling very week. He didn't have a fever last night so I hope that is a sign he is on the road to recovery. The nurse said his WBC was 0.3 yesterday. Not sure what the other counts were. Still has no appetite.

Thanks again for your support.

Love,
Sophia

[Donna E]

Hi Sophia,

I can tell you are a great daughter. Wow 9 kids!!! God bless both of your parents! I have two a 5 and a 6 year old and at a very young age they lost my brother's wife (their buddy) to ovarian cancer at the age of 40. My daughter was only 3. I hate the thought of them now maybe losing my Dad. They are so young to have to deal with this. I am a true blue Daddys Girl and my Dad was also Mr. Fix it!! He worked in NYC every day as well as Newark as a systems analyst and worked with computers when they first came on the scene. He was always fixing things around the house on the weekends and working on the lawn. I always worried about him being exposed to all the lawn chemicals and sprays . . . I would love to develop a questionnaire to see if we can find any common threads to maybe see what causes MDS.

I have heard from a neighbor of mine that a drug she was taking for arthritis might cause MDS. I don't know what the name of it was though.

We are at a state where my Dad still has his feet and hands wrapped and the Neupogen shots are now giving my Dad problems so if he takes the shots he can die but if he doesn't he will die. We don't know what to do now and the doctors are conferring with one another trying to get the next course of action, if there is one.

What is so sad is that my Dad is still with it. He is not experiencing any pain with his pain meds and he still has fight in him but now we don't know what tools he can use to actually fight. My Dad has been my family's ROCK. My words to describe him would be gentle, loving, he was always very liberated, he didn't get caught up in gender roles . . . he was the earner but also the cook, cleaner, diaper changer . . . He was blessed with wonderful parents. His mom is still around and will be 96 this September but my fear is when my Father dies, she will die too because she won't be able to stand the pain of losing her child. I have always come from a very large extended family but in my own there are only three kids. I am in the middle. It has been wonderful having been surrounded by all of this love but always knew the pain down the road of losing everyone one day. It doesn't make it any easier.

I know after living with this illness for 11 years with my Dad I have to be dedicated to helping get rid of this illness so no one has to live with it again.
That is the only way I can get through this and make any sense out of it all.

I am taking the day off from the hospital to spend the day at a swim club with my children but will be back there tomorrow.

Feel my hug . . . . keep me posted . . . we both will get through this together . . .

Love from NJ,
Donna E