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bety
MemberDennis, Our thoughts and prayers are with you.
All the very best. betyMemberHi Patti,
I appreciate your input regarding iron overload. I will check on husb’s ferritin level when I see our hemo next week. As of last month, his liver and kidney function test results were within range. I understand that for aranesp to work well, an iron supplement is generally recommended. Unfortunately, the aranesp does not seem to be effective even with the iron supplement. Almost a catch 22. All the best, betyMemberNeil, thank you for your rapid response and very helpful insights.
My husb is getting 300 mcg aranesp every 2 weeks. Up until Friday, he has been taking iron supplements. I thought he should stop taking them because I was afraid that the extra iron might be contraindicated now that he is becoming tx dependent. I did not realize that it takes several years for iron buildup to take place.
I’ve read that procrit is sometimes more effective than aranesp, but I don’t think my husb can tolerate the frequency. As it is, he is so depressed with every medical contact.
I am reluctant for him to have another BMB because of the discomfort and the big drop in his counts that came with it. This could have been a coincidence.
Although he was Dx in ’03, his counts have been dropping intermittently and gradually for the past 10 years. Because he felt well, we did not persue a consultation.
I’ll have to ask if the platelets have been examined for quality or clotting time. He has no bruising, petichiae, or bleeding gums
but suffers from rare but occasional nosebleeds. Our internist has been following his vital signs, which are generally within range. Systolic hypertention, which has been reduced significantly with juicing carrots and celery, has been an issue. We monitor his b/p closely. Because of the aranesp side effects (they tend to lower blood counts), we try to avoid b/p medication.
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Husb:age 86, Dx 7/’03. RARS, pancytopenia with multilineage dysplasia. No abn. chrom. Now, non-responder to aranesp. Responds to neupogen. First tx Aug. 11, 2006MemberDear Susi, Perhaps you should ask your hematologist and cardiologist to work together on the treatment for the heart and carotids as well as the mds.
Apparently, the aspirin and plavix are prescribed to prevent blood clots that might be a problem with the heart and carotids. On the other hand, Neil is right about aspirin (and possibly plavix) being contraindicated if there is a chance of bleeding. All the best, betyMemberPatti, Your mil will continue to be in my prayers…especially with regard to prevention of infections and bleeding. Take care of yourself. You will need considerable strength if you are to continue being helpful. I am sure we all empathize with you and the family.
All the best, betyhusb, 86, dx rars 7/03. Pancytopenia. Rx: arenesp, neupogen, upcoming first tx.
MemberHi Neil, According to procrit’s manufacturer, the drug should be withheld once the hgb reaches 12 because there is a danger of developing blood clots beyond that level. All the best, Bety
MemberCheryl, Thank you for your advice. I had planned to speak to our hemo but was waiting for the time when my husb would have his first blood transfusion. I expect that it will be quite soon. Meanwhile, I have gotten answers to most of my questions while my husb is present. Our hemo speaks quietly, my husb is a little hard of hearing and fortunately, tends to tune out when anything medical is discussed. Hopefully, I will be better informed soon. All the best, Bety
MemberJerry, thank you for your explanation. I would ask our hematologist more about blasts but I do not want to raise muy husband’s anxiety level or increase his depression. I don’t think this would help his immune system. Thank goodness I have you all to answer my concerns. All the best, Bety
MemberHow do you know that you have blast cells? My husband’s counts are all very low. He has bone marrow failure. Can he have many blast cells at the same time? When he had a bmb three years ago, his blast cells were less than 5%. As far as I know, he has none circulating in his blood streame. Bety
Husband, 86, pancytopenia, RARS, wbc 1, hg 7, plts 99. Feels well, very pale, dozes a little more than usual…seems normal for his age. He is more active than most men his age. Gets aranesp 300 mcg q2w. May start his first transfusion soon.
MemberHi Patti,
I hope you will come back soon. I miss your posts and would like feedback on your mil.
Just something I learned from my husband years ago. Arguments are like a ping pong game. If you do not hit the ball back, the argument usually does not escalate. In this case, others kept hitting the ball back (HARD). Friends, I am glad that most of us want this forum focused on our main issue…gleaning from our experiences and gaining valuable information that will help all of us and our loved ones.
I log on to the forum several times per day, hoping to learn something that will help allay my anxieties, help make decisions and help relieve symptoms. I appreciate every post and keep referring back to them. I feel like I am on the receiving end. I wish I were more knowledgeable so that I could contribute more. All the best. BetyHusband, age 86, RARS pancytopenia, feels well, dozes a little more than usual, very pale (normal complexion ruddy). WBC .9, Hgm 7. plts 99. On aranesp, which does not seem to work anymore. Will probably get his first tx soon. Dx 7/03.
MemberDear Patti, Essentially, my full time job is learning about treatments for mds. We all have this in common. The forum is the only place I know of where we can benefit first hand from the experience and knowledge of others who are emotionally involved. I look forward to your posts…Not only have they been enormously helpful, but also provide some sort of security blanket. Until you are ready to return, I would appreciate some contact with you. Come back soon. All the best, Bety
MemberPatti, I hope your timeout is brief and that you will come back soon. I find your suggestions very helpful and keep referring back to your posts. The mds forum needs you. You must have many supporters that are not vocal but are part of the silent majority. Please reconsider. Terri made some good points. We all indulge in displaced aggression…especially toward close friends and family. Here, we are all friends and family. All the best. Bety
MemberPatti, Thank you for the names of the ny practioners. Getting there might be difficult. If you have names in the Brooklyn or NYC area, it would be much more convenient. Right now I have two juicers but I will look for the Champion brand. All the best, Bety
MemberWhich juicers do you all recommend?
MemberSuzanne, Thank you for the information about Cure magazine. I was able to get the article (and magazine) on the web. In the address space type in http://www.curetoday.com
Next click on current issue. Click on Surf and Turf for the article.
You can click on Free Subscription to get the magazine delivered free to your home. Just fill out the form and either fax it or mail it to the magazine. All the best, Bety -
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