Dad with skin lesions . . . need help in diagnosing . . . he has MDS

[Donna E]

Hi Everyone,

Please forgive me if these photos are upsetting but my Dad has MDS and we are dealing with a skin problem that no one has been able to identify . . . neither his blood doctor, infectious disease people or dermatologists know what is going on . . . Please help and if there is anyone who has seen this and can help us with this PLEASE let us know. My Dad is in so much pain and will probably be at the hospital tomorrow . . .

Here is some history on him.

He has MDS and last year was diagnosed with non-infectious TB in June of 2007 - result of a bone marrow test.



Currently his numbers are:

Platelets 11

White Count 5.3

Hemaglobin 7.2


He has had 3 cycle of Vidaza and is taking Neupogen and was taking Procrit 60,000 units a week but recently stopped that.

He has been off of TB medicine since June 2008.

This skin problem started when his platelets went down to 2 and he was hospitalized around the Christmas holiday. He was taking 60,000 Procrit each week (2006, 2007 & 2008). He was wondering if Procrit could become toxic in your body after this many years and dosage . . . His feet and hands were extremely swollen and red and then these lesions started to appear as the swelling started to disappear. They are extremely painful and he said he feels like his feet are in a vice or on fire. He also gets electrical pain in his feet. He cannot put shoes on or walk that much. His hands are very sore.

Tomorrow he will probably be going to the hospital as last night he was crying in pain even with oxycontin.
This is so troublesome because he has a very high tolerance for pain.

Anyone who can help or if any doctor is out there who has experience with this, please contact me at destwanick@yahoo.com.

Thanks to every sweet person out there living with this illness.

Love,
Donna

[Chirley]

Hi, I don't know anything about the skin lesions but they look very sore. Just as a matter of interest, has your Dad had his copper levels tested ? I have been reading that they think that low copper levels has something to do with MDS. I was wondering if any one else has had their copper levels tested and if so, what the results were. Chirley

[Birgitta-A]

Hi Donna,
I wonder if you know what TB medicines your dad had? Could the skin lesions be an adverse reaction to any of them?

Procrit can give thrombotic events and “In patients treated with commercial PROCRIT®, there have been rare reports of serious or unusual thromboembolic events including migratory thrombophlebitis, microvascular thrombosis, pulmonary embolus, and thrombosis of the retinal artery, and temporal and renal veins. A causal relationship has not been established. “

http://www.rxlist.com/cgi/generic/epoetin_ad.htm

Kind regards
Birgitta-A

[ESeda]

Hi Donna,

Good job posting pics of those horrible lesions. My wife, Nellie, and I have been looking at those pics and have some questions for you. Is your dad on Prednisone? That may help the symptoms. Along with the Bactroban Cream I suggested in prior posts. I suspect the pain he gets is from the soars drying out and pulling on the surrounding skin. I experience the same pain when I develop water blisters on my legs. They brake then dry and can become very painful. I use the cream and it helps prevent infection, soften the lesion and ease the pain. May not be a cure in your dads case, but may make him more comfortable.

Nellie has only practical experience with Prednisone. She takes it for lesions and soars that she gets as results of her Lupus. Since she was a young girl she has suffered with the effects of Lupus of which she has had many unknown sores, lesions, swelling, bumps and bruises. So unfortunately they may never find out what exactly the sores are and are from, maybe we can help him feel more comfortable.

Good luck with that and wishing your dad well.

Eli

[Marlene]

Have they ruled out shingles (herpes zoster) and Sweets Syndrome? You can google images of these to see if they are similar.

http://dermatology.cdlib.org/DOJvol5...py/sweets.html

Marlene

[Donna E]

Hi Chirley, Birgitta, Eli and Marlene,

Thanks so much for all your replies, love and support that I feel right now. I just came back from seeing my Mom and Dad. He decided to stay home and goes to the Doctors again tomorrow. He will then decide if he wants to be hospitalized. Today I took another look at his hands and feet. It almost seems like everything started out red and swollen and then whatever is toxic and causing him problems is trying to work it's way out of his body. It was good to spend the time with him and I am praying we get answers soon.
I can't tell you what your support means to me . . .

Donna E

Did you all get the email from aamds.org about supporting new legislation?
I got it and forwarded it to everyone I know. If you have not received it, please let me know if you visit the site and can't find info on it. I can email you what I received . . .

[Neil Cuadra]

Originally Posted by Donna E

Did you all get the email from aamds.org about supporting new legislation?
I got it and forwarded it to everyone I know. If you have not received it, please let me know if you visit the site and can't find info on it. I can email you what I received . . .

You can find details about it here: Bone Marrow Failure Disease Research and Treatment Act. Please let everyone know about it.

[Alison]

Hi Donna

Thanks for posting your pics. I felt a tinge of sadness when I saw them because its so similar to what my Dad's skin looks like. He had a severe reaction to anti-inflammatory medication last year and his skin looked very similar to your Dad's. My Dad continually suffers from skin lesions which apparently is caused by bleeding underneath the skin (very low platelets) and then simply a light bump causes the skin to break open. My Dad's last blast cell count was 20% but we are hoping that the chemo he is receiving will start having a different effect. He has been on Vidaza and his body took a knock and the bleeding/lesions were worse than ever. He stopped Vidaza end February and with him being in hospital under constant care (he is in-patient for 6 months receiving chemo) his skin is looking better although still blotchy and discoloured in places.

All of the best and hold out hope
Regards
Alison

[Donna E]

Thanks so much for responding. They were able to take a biopsy and the lesions were some type of staph and they called it Impetago (sp?). Not all results are back yet. He is having horrible reactions now to Neupogen. Two days ago they had a crash cart and 12 people in his room after they gave him his shot as he has bad back and chest pain, breaks out into a cold clamming sweat and his blood pressure went very low. His feet and hands are wrapped and they are treating them every day. He is still in the hospital. Oh, you don't know how your support gets me through this. It is so hard watching my Dad go through all of this . . . Thanks for your support -- it means the world to me right now . . . If you believe in prayer, I will take some of those as well . I will keep everyone posted on his progress.

Donna E.

[Alison]

Hi Donna

Prayer is what keeps us going I think! We received news today that the induction chemo my Dad has received was unsuccessful. For a few days his blast cells reduced (were 20%) but his latest BMB revealed that there has been an increase. We are devastated. His only chance is a Bone Marrow Transplant. We have started to look for a donor.

Its really sad.

I'm glad that they managed to diagnose what your Dad's condition is. I really feel for you because I have beena similar process with my Dad. Be strong and know that there are many people out there sharing your pain.

A

[Donna E]

Dear Alison,

I am so sorry about your Dad and pray he finds a donor. I am a big advocate of cord blood banking. Please learn about it at www.cordofhope.com.
My Dad is too old for a transplant as he just turned 71. We all just found out yesterday that the drug we have been using for years to build his white blood cells is now doing something weird in his body where he could die getting the shots. He will die without them. So we are in a dilemna. My mom who has been giving him the shots is so afraid now to give them to him.

We all had a good cry yesterday and don't know what are options now are . . . Feel my hug from across the ocean . . . and know my heart is with yours during this difficult time . . . Please keep me updated on your Dad and you and know I am here for you . . .

God Bless,
Donna

[Neil Cuadra]

Originally Posted by Donna E

We all just found out yesterday that the drug we have been using for years to build his white blood cells is now doing something weird in his body where he could die getting the shots. He will die without them. So we are in a dilemna. My mom who has been giving him the shots is so afraid now to give them to him.

Donna,

The doctor needs to explain the choices and guide your family about what to do. Your mom should not be left in such an awful position, as if she's solely responsible for your dad treatment decision.

[Donna E]

Neil,

Do you know if they are able to do transplants on people my Dad's age? He was told 11 years ago that he was not able to have one. I have two children who we both banked their umbilical cord stem cells . . . do you know of any cases of MDS treated with these cells yet?
I feel like we might be nearing the end. I don't know what we are going to do now . . . My sister is down from upstate NY and I know she will ask the doctors questions. She is very skeptical about cord blood and I am trying to make her realize that these cells have value, if not to help my Dad but to help someone suffering from a serious illness. I always hoped my kids cells could help my Dad . . . oh, I can't thank you enough for this forum . . . it is keeping me going Neil . . .

Donna

[Neil Cuadra]

Originally Posted by Donna E

Do you know if they are able to do transplants on people my Dad's age? He was told 11 years ago that he was not able to have one. I have two children who we both banked their umbilical cord stem cells . . . do you know of any cases of MDS treated with these cells yet?

Transplant eligibility is based on

• the prognosis of the disease, typically measured using the International Prognostic Scoring System (IPSS)
• the availability of a stem cell, bone marrow, or cord blood donor
• the type of donor (identical sibling, other sibling, unrelated) and how closely they match
• age
• the patient's overall health

Less intense transplants, with less chemotherapy and little or no radiation, are another possibility. These non-myeloablative transplants or "mini transplants" have made it possible to treat older patients, so we now see patients over 60 receiving transplants. But by their 60s and even more by their 70s, most patients have other health issues that rule out any kind of transplant. Also, the older we get, the less able our bodies are to adapt to a new immune system.

You already know about the importance of cord blood banking. Yes, there have been cord blood transplants for MDS patients. Doctors are researching ways to get around some of their disadvantages, particularly the small number of blood-forming cells in a single cord blood unit. Dual cord blood transplants are one approach, but the risks of graft-versus-host disease remain high.

I'm a caregiver, not a physician, and I can't give you and your dad specific advice, but I welcome you to share what you learn from the doctors.

[Donna E]

Hi Everyone,

I am so sorry it has taken me so long to update you on my Dad. He spent over a month in the hospital over the summer. He is now home and my mom continues to care for his wounds. His doctors say that he is "living his miracle" because he can no longer take Neupogen for his white blood cells because his body is now allergic to it. His white blood cell count and platelet counts are very low. He continues to get blood transfusions and suffers from nose bleeds at times. They feel he is still here because he loves my Mom so much. I DO BELIEVE THAT TO!!!! It is amazing what the power of prayer and love can do!!!! She is fabulous and cares for him better than any nurse can. My mom turns 70 on October 24th and I know he wants to be around for that. GOD WILLING he will be.

We need to continue to all fight to see that the Bone Marrow Failure Disease Research and Treatment Act is supported and passed in Congress. Please email all your friends and family, leave fliers from the aamds.org web site with your doctor's office. Flood the phones . . . we all have the power to make a difference and get this legislation passed.

Lastly, I continue to pray for all of you fighting this disease as well as loving and caring for someone with this disease. May God Bless you all . . . .

All my love from New Jersey,
Donna E

[Donna E]

Hi Everyone, I am sorry that I have been away for so long. We almost lost my Dad over the summer months and he was again hospitalized during Thanksgiving. He is home but is still battling horrible skin wounds all over his body. He is in much pain and is on medication. He continues to fight with such courage. He usually needs a transfusion weekly. I felt the need to return to the forum because once again I am battling my feelings of not being able to do anything for him. I wish I could take it all away but I have committed to helping out more for my mom's sake as she has been nursing him for so many years and these wounds are getting them both down.
I want you all to know that I believe you are all HEROES and I pray for all of you in this battle. For the immediate care givers . . . let your sons and daughters know when you need help. My mom is too proud so now I will just go over her home weekly. I should have known living with my mom all my life that she would not let me help easily even though she needs it . . . Now I have decided to just go there . . . to be there for both of them in any way I can . . . LOVE TO YOU ALL . . . STAY STRONG and keep HOPE alive . . .
My Dad just celebrated his 72 birthday on St. Patrick's Day
I am a lucky woman every day I am around both of my parents. They have taught me a lot through this fight.

[jamesgeorge55]

Hey donna first of all i salute ur and ur family's courage. I wish a very happy birthday to ur father . Take care.