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SusanJMember
Dear Beth,
Of course it will be okay to email me! Please email me anytime. I know what you are going through and it helps so much to have someone to talk to. I am definitely no expert on this horrible disease, but this forum has helped me so much and there are wonderful, special people here. I look forward to hearing from you!
SusanJMemberHi Beth,
We took my dad to UAB last spring for our second opinion. The specialist we saw was Dr. Foran. We loved him! The only reason that my dad is not getting treatment there is because he doesn’t want to travel that far every time he needs to see the doctor. Dr. Foran told us that daddy was getting the same treatment from his hematologist/oncologist in our hometown that Dr. Foran would give him. We got the same diagnosis at UAB that we got in our hometown, and our doctor speaks with the doctors there frequently. I highly recommend Dr. Foran. If I can be of further help to you, please let me know.Good luck!
Susan
SusanJMemberOh Maureen, I am so sorry. I always felt that our dad’s were very similar with this illness. May God be with you now and please know that we all love you and are always here for you. God bless you.
SusanJMemberThanks for the reply, Jack. The last BMB his blasts were 6%, he is having another BMB next week. He is having a transfusion today. He isn’t on any drug now except Aranesp injections every 2 weeks. Last week his platelets were 29, RBC 3.25, WBC 3.6. I still get confused and don’t totally understand how the counts are supposed to go. The doctor doesn’t seem to think that Revlimid would be helpful since Vidaza wasn’t. He told us that daddy has already lived longer than he though he would when he was diagnosed.
SusanJMemberDaddy has already started to have a problem with constipation. Any suggestions on what to use? He is also so tired that he can barely hold his eyes open. Does the nausea medication contribute to the sleepiness? Again, thanks for all the replies, advice , and encouragement.
SusanJMemberDear Maureen, Simon, Terri, Eve, and Shari,
I can’t tell you all how much better I feel about this since hearing all of your stories. God bless you for sharing with me and praying for us. Without your prayers and support this year would have been unbearable. It’s hard to believe that almost a year has passed since we received this diagnosis that changed our lives forever. Please keep encouraging me!
SusanJMemberThanks Eve & Shari,
God bless you both for sharing your experiences with me. I feel better knowing how well both of your dad’s have done with Vidaza. I was scared because daddy has been feeling good lately. I hated to see him get start feeling bad but so far after the second treatment he is still feeling okay. Please let me know if there is anything else you think we need to know. I will keep your dad’s in my prayers, and of course you also!
SusanJMemberThanks Shari,
It’s so good to hear that your dad has had good results. I am praying for that with mine. My mother is giving us a really hard time about him taking the treatments. She doesn’t want him to be sick because she doesn’t want to take care of him. That’s another story. Does your dad get nauseated? You may get tired of me asking all these questions!
SusanJMemberKathy,
I’m so glad that your dad is finally out of the hospital. I can only imagine how exhausted you are. My dad’s platelets are always low. As far as I know, the lowest they have gotten is 17. He had 2 platelet transfusions when he was in the hospital last month. They didn’t help much. His platelet count this week when he went to the doctor was 33. The doctor said that he will proably need a red blood transfusion very soon.He runs a low grade fever everyday. I’m not sure how much worry one can take. I really don’t have any answers for you, I can only sympathize. I know how helpless you feel. You are always in my prayers. God bless you.
Susan
SusanJMemberGloria,
I am so very sorry for your great loss. My prayers are with you. God promises not to put more on us than we can handle, but sometimes our burdens are so heavy. I do know that God will carry you through this painful time, please lean on him and know that you have a family here on this forum. We will lift you up and help you to get through these painful days. We love you.
Susan
SusanJMemberMy dad got his flu shot yesterday and today he has been running a fever. It hasn’t gotten over 100.6 but has been pretty steady all morning. Has anyone else had fever after a shot?
SusanJMemberHello dear friends,
Today my husband’s blood tests were normal. Thank God! Finally a little good news. The doctor said that the machine must have glitched. He wants to retest in 2 weeks though, just to be sure. Thank you for all of your prayers and for being so understanding of a crazy woman!
Susan
SusanJMemberJody and Jim,
God bless you both for trying to calm me down and give me much needed info. I am trying not to worry, but that’s hard to do. All I have been dealing with during my daddy’s illness has nearly driven me crazy, now to think that something could be wrong with my husband who is my rock and my strength. I can’t do it. Please pray for us. I pray for you daily.
SusanJMemberThanks for the reply HB. I never dreamed that gout could be this bad. Daddy has taken colchichine daily for 10 years as sort of a maintenance/preventive measure for his gout. But since he was diagnosed with MDS in January his gout has been virtually uncontrollable. Now since we found out that colchicine isn’t good for people with low platelets, I don’t know what we will do. We can’t win for losing, everything counteracts something. All of daddy’s blood lines are affected by this disease, he has low red cells, white cells, and low platelets. I will pray for you and I wish you all the best. I have found some wonderful friends through this forum.
Susan
SusanJMemberHi Kathy,
Thanks for your reply. My hat’s off to you, I don’t know how you are still holding up after six weeks of hospital. My dad was in for two weeks and then again this past weekend for three days and it nearly wore us all down. He hasn’t had a fever for alsmost two weeks now but he developed a severe case of thrush in his mouth & throat due to all the antibiotics he was taking and he got dehydrated, that’s wht he was back in the hospital for three days. He has had such a rough time. He is beginning to feel a tiny bit better, but is still very weak. His appetite is coming back slowly, but still nothing tastes good to him. This is just breaking my heart. I will keep you and your dad in my prayers. It is a comfort to be able to come here and share my feelings with such special people.
Susan
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