[KWJ]

They have them at many stores. Mainstream stores have them. I have seem them at Target or Fred Meyers which is a grocery and variety store. They are not exclusive to health food stores. I bought one at marshalls or TJ maxx too. Check ebay too – I will go check it out for you…

[KWJ]

I get really bad headaches. What helps me most is those herbal wraps that you can put in the micorwave and heat up and then put around my neck. They work better than vicoden or any migrane meds for me. I sometimes get headaches daily. I have Rhuemotoid Arthritis and Sjogrens Syndrome and the heat wraps helps with that too. I have them in my car, at work and at home! They smell good and feel like heaven!

[KWJ]

Tia – I am so sorry for you loss and Cheri too. This disease sucks and seems to take down everyone with it.

[KWJ]

Thanks everyone. I am trying to stay positive. My mom is going to set up a caring site, she just bought a laptop, so I will post the link after she gets it.

They are supposed to be at SCCA until April. I guess we are having Christmas in Seattle!

[KWJ]

My dad is headed to The Hutch in Seattle in 2 weeks for a mini SCT. This is a scary time for sure, I wish you good luck.

[KWJ]

One day at a time. I think we are all in a 12 step program for life.

Hold on Gloria. As a daughter going hrough this, your girls need you still. And if you have grandkids, they need you too so much. My kids are really having a hard time with their Papa being so sick. It will literally break our hearts when he passes. He is my best friend as is my mom.

Try to stay strong. I know it is so hard.

[KWJ]

Why did he decide not to do it? Just curious, my dad is going to the Hutch for the same thing and I am terrified as well after Dennis but don’t know what else is there?? My dad has RAEB2 as well, he is at 12% blasts, transfusion dependent, sleeps all the time.

[KWJ]

Here is a description of Sweets. Is common with MDS.

Sweet’s syndrome, or acute febrile neutrophilic dermatosis, is a condition characterized by the sudden onset of fever, leukocytosis, and tender, erythematous, well-demarcated papules and plaques which show dense neutrophilic infiltrates on histologic exam ination. Although it may occur in the absence of other known disease, Sweet’s syndrome is often associated with hematologic disease (including leukemia), and immunologic disease (rheumatoid arthritis, inflammatory bowel disease). Treatment with systemic corticosteroids is usually successful.

My dad is done with Dacogen, it did not help him at all. Just knocked his platelets out. He was ok before with those, now he is transfusion dependent on those as well as reds every week instead of every 2 weeks. He is headed to the Hutch tomorrow for his 1st interview about a SCT. Hoping for good news as my Granny just passed away lst week from lung cancer. They were diagnosed the same day, 2.2.06. Hoping for a btter result for my dad.

[KWJ]

My dad got Sweets after his shots of neupogen. I reallythink it progressed his disease and brought on the sweets. his blasts were at 5% before and 13% after. Hid doc must think so too because he won’t give him anymore. Even as his whites are at 11.

[KWJ]

I am so sorry for your loss.

[KWJ]

Thanks everyone…I talked to a doctor at teh Hutch yesterday, he was very optimistic about the options left.

Dad currently see Dr Seigel at the Rose Quarter Cancer Center, the doc did his studies at the Hutch so that has been an option all along. OHSu turned him down because his blasts were over 10%, that is the only criteria he did not meet.

Dr Witherspoon explained that they do much riskier stuff and his blast % was ok to still do the SCT.

I totally understand the risks, it scares the crap out of me but my dad really wants to do it. My parents have an appt on Oct 11 for an interview and the doc there said they could so the SCT as soon as a week after. So soon I guess. Yikes.

His doc here does not want to do another dose of dacogen because it has changed nothing only made hid counts worse. I wonder why too how come we can’t do more. But it seems like the Hutch hasa lots more options.

My parents are ready to go. Does anyone know if the Hutch has RV parking? I will go research – maybe I can find out!

[KWJ]

Hang in there Kathy…Have the finally gotten the sweets under control? And I know you were considering a 2nd opinion at the Mayo clinic, can that still be done or is it too far for him to travel. It had sounded before like you were having some doubts about his docs, I would get another opinion. Maybe someone here knows a good MDS doc from Las Vegas.

[KWJ]

I have been keeping up to date on the BMT and this is just devasting. I was so hoping for a good outcome. Not just for Dennis but for all of those who need a SCT. I am terrified for my dad to go through this when it seems so brutal on you.

I will say a prayer for Dennis and his wife, Nancy. This is just so sad. Praying for a miracle.

[KWJ]

So sorry Lucy..it seems this terrible disease leaves no one alone for long.

[KWJ]

Sounds like what happened with my dad, he was totally out of it…they finally figured it out and put him on predisone, it got better…I hope they figure it out soon. I bet it is sweets.

[Author]

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