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Thank you Bergit, I was thinking about how Bob was doing. I just read his memorial and watched the slideshow. What a beautiful memorial for a wonderful man.

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Pam, for some reason I am unable to send you a private message. I’m not sure if its because I haven’t been to this site in awhile. But please feel free to email me anytime if you have any questions or would like to vent. I live in glendale, just a hop skip over the Oc. My email address is junechoi212@gmail.com

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Pam, I took my father for a second opinion at UCLA with dr Ron paquette. Since my father treated at kaiser (sunset) we had to pay out of pocket for the consultation. Dr paquette spent approx an hour with us and was very patient and answered all our questions. From what I remember, dr paquette specializes in mds and he was actually a speaker at an mds seminar I attended in Las Vegas.

Otherwise, in California, city of hope is also well known for treating mds and leukemia patients.

My father actually treated with dr roberto rodriguez, an amazing doctor who transferred from the city of hope to kaiser sunset.

Although my father has now passed, I still remember the journey as if it was yesterday. If you need someone to talk to, please free to contact me. I’ll send you a private message with my email address.

June

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Bob, I am so sorry to hear about your health condition. I remember your kindness and willingness to help and teach others who were new to the site. After my father passed away three years ago, it was hard for me to come back to site. Today is actually the first time I have checked in since three years as I was trying to find a post for low platelets and pineapple juicing. Life is full of unexpected surprises, as my mother has now been diagnosed with colon cancer, which led me to join another wonderful forum called the colon club, where one member had some trouble with low plts.

Bob I will be praying for you, and that your body has a positive response to the chemo. Many blessings bob, you are a very special person. Xoxo

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Renee, I am so sorry for your loss. My sweet father passed away on June 15th from this horrible disease. I am still in the grieving stage and I too can empathize with your broken heart. My heart continues to bleed and I find it so difficult to move on with my own life. Prayers and thoughts to your family during this difficult time.

One day when i feel more strong, I will post the events that led to my fathers passing, if it can be of help or insight to this disease… Otherwise please feel free to message me… I would like to help or be a friend to anyone in need….

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my father has been on exjade for the past 2 1/2 years and according to him, he hasnt had any problems at all.

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Bob i haven’t heard of this medication, but have you ever had any problems with your spleen due to the blood transfusions?
How’s your other blood lines? plts or wbc?

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who here on the forum is on weekly platelet transfusions? i know in the past there were posts about juicing pineapple juice with black seseame seeds. has anyone had any succeed with this? and my second question is, once the platelet count is down, has anyone seen an increase over time?

thank you !

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Laurie,

For the past 6 weeks, my dad has been receiving plt transfusions on a weekly basis. His plts used to be in the normal range, but eventually did decline. By the time he goes in for his weekly CBC’s, his plt level is 13-15, which our hema orders 1 unit of plt transfusion.

The past week, he has been compalining of itching. He says the itchiness only lasts for 20 minutes at most, and comes and goes. He feels itchiness on his ankles, sometimes the back of his year, sometimes on his thigh. He said that he seems very small bumps but they disappear really quickly. Is this what you are experiencing?

June

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Bety,

I’m so sorry for my late response. I am regretful that I haven’t been on the site sooner to read this post. Please accept my deepest condolescences. You were an amazing wife and a wonderful advocate for your husband.

June

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Amy,

Wow, I had the same thoughts today and I was going to write a post about this. My father, then age 71 yrs old, was diagnosed with MDS last Jan 2007. There was indication on his BMB that it was MDS/MPD, however with more characteristics of MDS. From the MDS category, he has RCMD. His only BMB was in Jan 2007.

Since then, we’ve tried Procrit – no response. We’ve also tried Revlimid for 5 ddays – dad got bad reaction. Then Vidaza for 5 months via IV, with no response but only caused his plts to drop.

Since Jan 2007 until now, he has been rbc transfusion dependent receiving approximately 1-2 units every two weeks. His hgb ranges around a 6.4 or so, and our hematologist only transfuses him to the point he is above 8.0.

As far as cardiac problems, my dad has no history of it. Instead, he just recently started taking his blood pressure medication as his BP is usually around 142/75 or so.

Currently, he is on Exjade 1500mg daily.

I , too, would like to know how long a person can stay just on transfusions. Is there anyone on this forum that is just on transfusions and no chemotherapy? If so, how long have you been transfusion dependent, and for how long?

God bless to everyone on this forum. Happy Holidays.

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Lynn,

I am so happy for your success! My dad has an appointment tomorrow and I’m going to talk to our hema about it. Do you take any other medication? For instance, we saw my dad’s general practioner and he just plcaed my dad back on high blood pressure medication.

One more question, what dosage do you take? is it still the same?

Cheers to your great success. Happy Holidays!!!

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Stacey,
I am so sorry for your loss. There are no words that I can offer to heal the pain, except thoughts and prayers that God will ease the pain during these days and the days ahead. Shalom.

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Deb,
Your father sounds like he was an amazing guy. I love the photo of you two. May God bring you peace and love.

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Thank you Mary! I will definetly keep you posted if we do decide to start the VPA. The one and only time my dad had a BMB it showed no blasts. So far, no blasts have shown on the CBC’s either. I’m always worried that one day there will be some blasts that come up on the CBC’s but so far, there have been none. Our hema said not to worry and that my dad is at a stable place where we just need to focus on the hgb. The only good thing about this journey is that my dad is REALLY positive. In fact, he doesn’t think he’s sick. He gets upset when we call him a “patient.” Instead, he has a very positive attitude and tries not to focus on his condition. We have been fortunate so far.

Prayers for you, Mike, and also to everyone on this forum. Hopefully, we will see a day where there will be a cure for all bone marrow failure diseases that no other families will have to embark this journey.

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