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Zoe
MemberCathie,
Do you mean the title at the top of a post? I think Mary changed the topic within this topic. On the main board does it still say "for only we who have MDS"? Mine does. I haven’t heard anything about the forum closing.
Zoe
MemberCathie,
My little granddaughter is doing well. Still in ICU, but she is breathing without oxygen and is maintaining her body heat without a lamp. Once she starts eating well consistantly, they will take her off the monitors and look at sending her home. I am expecting that within a week or less even. YIPPEE! She is my third. I have a 3 year old girl, a 1 year old boy, and now a newborn girl. They are so precious!
Yes, Lance Armstrong won the Tour de France 7 times at least–my son thinks it was 8. I made a sign thanking the riders as a James Cancer Center patient and sat outside and watched all day. It was fun watching their reactions when they saw my sign. Many smiled, raised a victory fist, or even whooped. Several said thanks for doing the sign. I was totally impressed they could talk at all (by the time they got to my house they had biked over 70 miles in one day!). At that point I would be panting with no voice left :^) if I could even move anymore.
I am just doing the Aranesp, no other treatment planned as long as it keeps working. We were flooded a few months ago and I was 3 days late on my shot. My hgb dropped 1 gram, then went back up after I got back on schedule, so I know they are making a difference for me. My vitamins help too.
Zoe
MemberCathie,
I am here. I have been dealing with life in general, which has been crazy for months. Now I have a premie granddaughter in ICU. She is 55 miles away, I am going to see her tomorrow. Only 4.5 pounds, but an incredible 18 inches long.
My hgb is sitting around 10 for now.
Today I sat out in my yard and watched the Pelotonia riders go by. They are over 2000 bike (pedal type, not motor) who are riding to raise money for cancer resarch. I missed Lance Armstrong in the morning though.
Zoe
MemberSusan,
You said his red platelets are low, do you mean red blood cells and platelets, or just red blood cells? I would check with his hemo about the asprin. I do take Natural Factors vitamins. They have made a huge difference for me and even raised my hemoglobin by 2 grams! I can’t say everyone would have that result, just my story. Different people have found different things that work for them.
As for work, I do work. In fact I am in the process of starting my own practice while involved in start up of a community center. If he feels fine, I say go for it!
Zoe
MemberBob,
Your absolute neutrophil count is the actual number count (1.4). I believe that around 1.8 is normal low end. So unless your counts have recently dropped, you are OK I think (I am not a medical professional). Recent drop may indicate a trend of lowering counts, and should be monitored. I am really tired, but I just read the last post, so hope that helps.
Zoe
MemberI have heard of the studies also. I did a bit of research because my calcium is always low, and while I am too tired at the moment to explain my theory (which no medical professional would likely give credence to anyway, so it doesn’t matter :*) I decided since there was a link between parathyroid glands, calcium and Vitamin D, and energy levels, I would start faithfully taking my vitamins which have a full dose of Vit D and calcium–along with just about everything else. So my long antedoctal story is that it has made a tremendous difference in my energy levels. No longer having days when I am too tired to eat, I don’t need naps everyday, and I am able to function past 7pm.
It could be anything in those vitamin pills which is helping my energy, but I will be curious to see what my next calcium level test shows.
For whatever my late night rambling means…:*)
Zoe
MemberPapeno,
Welcome to the group, though I am sorry you have to be here. First some questions, maybe they will help you know what to ask. Do you know what type of MDS your dad has? Since it is "almost leukemia," I am guessing he has excess blasts. Do you know his blast count. What type of shot was he getting? Was it to help his red blood count? If they are talking about more intensive treatment in the hospital, it doesn’t sound as if they are giving up on him. They are still thinking ahead, so don’t you give up! I know it is hard and scary though.
Zoe
MemberMarla,
I am so sorry to hear your sad news.
Zoe
MemberJeanette,
Glad to hear it is not clots. How are his counts holding up with all of this?
Zoe
MemberPam,
Hang in there. I have been praying for you too. I am glad you were able to get into The James, arent’t they wonderful. They will take good care of you.
Zoe
Member17 years, WOW. Glad you have a full tank for Christmas. Have a wonderful, energy full Christmas.
Zoe
MemberInteresting. I have no clue, but I have occassional symptoms of RLS, they have been increasing lately and for what it is worth, my hgb has been decreasing–went from 10 to 9 in two weeks.
Zoe
MemberThank you for your willingness to donate. There really is something wrong with the system, isn’t there? Best wishes on your husband’s appointment.
Zoe
MemberPam,
I am still at a low risk level, though I am on Aranesp. I am at OSU and see Rebecca Klisovic. I really like them, and from what I hear,they have a great reputation. They have been great about taking time to answer all my questions and to address my concerns. Cleveland Clinic also has a wonderful reputation, but I don’t know anything about them directly.
Zoe
MemberSyvia,
Sounds like you meet criteria for 5q Syndrome. Basically, if you have all “qualifications” listed above (5q can be the only the only chromosomal abnormality, platelets run normal to high, wbc is normal to slightly low, no excess blasts. Anemia tends to be moderate to severe.), you are considered 5q Syndrome. Anything out of whack with that you have 5q-, but not 5q Syndrome.
Here is an article you might want to check out
http://www.broad.mit.edu/news/97 If it goes to the home page instead (which it just did for me), go to the search function and type in 5q gene culprit.Also, you can google Molecular pathogenesis of the myelodysplastic
syndromes, including the 5q- syndrome
J. Boultwood, J. Wainscoat to find an article with some specifics on 5q syndrome. It is PDF, and I can’t figure out how to just post the web addy. Here is a quote from that article, “Using fluorescent in situ hybridization (FISH) and
molecular mapping techniques our group identified
the commonly deleted region (CDR) of the 5q- syndrome
as the approximately 1.5 Mb interval at 5q32
flanked by D5S413 and the GLRA1 gene.”http://asheducationbook.hematologylibrary.org/cgi/content/full/2006/1/192 is an article from “Blood,” specifically about 5q Syndrome.
Zoe
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