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CMH64
MemberEstee, please do not beat yourself up about not being aware of the symptoms. Like my husband is fond of saying ” you don’t just get up one day and say, ‘I thing I will read about leukemia today’.” Our general practioner evidently missed my husband’s early symptoms for years. He had low blood counts and several unexplained bouts of cellulitis but was not diagnosed until he was at AML. MDS is rare and many of us had never even heard of it before diagnosis. Many doctors never have occasion to treat an MDS patient. Please do not blame yourself. You did the very best you could have done with the information you had at the time. I am so sorry that you have to go through this! Cathy
MemberLinda, have the sores been cultured? Are the scabs black? I am wondering if fungal infection has been ruled out. My hubby had a fungal infection of the skin that sounded similar although his did not involve the mouth. Of course, the two could be unrelated. I am hoping that this is not the Problem. Best of luck to you in fighting this horrible monster, MDS. Cathy
MemberHappy Birthday Marsha! We wish you the very best of everything as you continue to be a inspiration to all of us! Cathy
MemberGood idea Jerry! I want to take a moment to thank all of the stem cell and bone marrow donors, related and unrelated, that have shared the gift of life with those in need of transplant. My husband’s brother was his donor and there will never be words to thank him for giving Troy another chance at life. Troy is one year post transplant and doing well. We are learning to live the lives of retired people now rather than the life of people dealing with a life threatening illness. People who choose to share their bone marrow/stem cells with others give a gift of self and selflessness. My thoughts and prayers of thankfullness go to each and every one! Happy Thanksgiving to all. Cathy
MemberAngie,
First, what does the hemo say about the need to continue? Perhaps he could communicate with the internist on your behalf. Second, do you need a referral from the internist to see the hemo? If not, it seems to me your schedule of visits would be between to you and the new hemo. If you must have the internist permission, ask if you can have enough visits to at least establish a relationship with a new doc. If you need the internist’s permission and you feel stongly that you need to continue under the hemo’s care you can always try to appeal to the insurance company. It might be that you could also arrange for the internist office to fax CBC results to the hemo on a regular basis.
We have had issues with personality/ego and professional opinion differences between docs. My husband had his transplant out of town and is being cared for locally for the day to day stuff by another hemo/onc. Then insurance issues result in the involvement of another group of docs for specific problems. Then there is the primary care doc, also. The disease is hard enough to fight without feeling in the middle of all that! I hope that you can work out a plan that you and your Dad feel comfortable with. Keep us posted! Cathy
MemberIt could be a fungal infection of the skin! If his counts have been down this is a possibility. Fungus is everywhere, all of the time. People with healthy immune systems can fight if off with no problem. But the immune compromised can easily get a fungal infection. Fungal infections are very serious but can now be treated with success due to new drugs like V-fend, caspofungin and others. A fungal infection of the skin is what led to my husband’s diagnosis of AML. The infection returned accompanied by an infection in the lungs during induction chemo and has been kept under control through a SCT and since with V-fend. Good luck, let us know what they find out with the biopsy. Cathy
MemberGreg and Jennifer,
May peace be with you and the entire family. My thoughts and prayers are with you. Cathy
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Husband Troy, 59, dx AML M4 12/03, Induction, fungal infection skin and lungs, remission, four
consolidations, MRSA sepsis infection, kidney damage and dialysis, relapse, dx CMML 8/04,
related allo SCT, 11/04, remission, kidney function improved enough to stop dialysis 5/05, possible relapseMemberGreg,
I am so very sorry to hear the latest news. Your Mom has been an inspiration to me as she and my husband and Marsha have traveled the SCT road together. She has been amazing! Your Dad and you have been amazing also in your love, care and support for your Mom. Know that you are all in my thoughts and prayers. I am glad to know that she is in a caring supportive environment (St L. is the best)and that she has peace with her decision. Please keep us posted as you can. Cathy
MemberGreg,
We just never seems to run out of complications with this horrible disease. I am thinking of your Mom and your family as you continue to fight the monster, or in her case monsters! Bless your Dad’s heart! He has been a great caregiver! We are praying that the GVHD will submit to the steriods and things can move forward! Thanks for keeping us updated. Cathy
MemberDon,
It seems to me that the donor would appreciate knowing that Karen is doing well. I know of someone who has dinner yearly with their donor. Even though “Thank You” seems insufficient to us it is what the language provides us to express our grateful feelings. Down the road you may just think of something special that seems right to you and Karen. Are you ever allowed to know the identity? Cathy
MemberDon,
It seems to me that the donor would appreciate knowing that Karen is doing well. I know of someone who has dinner yearly with their donor. Even though “Thank You” seems insufficient to us it is what the language provides us to express our grateful feelings. Down the road you may just think of something special that seems right to you and Karen. Are you ever allowed to know the identity? Cathy
MemberDoreen
Hang in there! You can do this! We are thinking of you and wishing you the very best. Thanks for your updates! Cathy
MemberJack, Troy had his transplant at the University of Chicago. There is a Dr. there who has done three of the five transplants with dialysis patients. He uses Campath as a conditioning agent along with some chemo. Campath is an antibody rather than a chemo and is less toxic. Troy was two weeks from doing his transplant at MD Anderson when he got sick last April. Once he was on dialysis the Dr. there would not do the transplant but did refer us to the Dr. in Chicago. This disease is always an adventure it seems! Best of luck to you! Cathy
MemberKate, I am thinking of you. I am so sorry for your loss. You and George fought with all you had. You have been a marvelous caregiver, Kate! Take comfort in knowing that you both did all that you could do. George was so lucky to have you at his side. Please let us know how you are doing and if there is anything that we can do to help. Cathy
MemberOh Kate! I am so very sorry to hear this news. You and George have been such strong fighters against this monster. My thoughts and prayers are with you and George, your family and his medical team. Cathy
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husband Troy, 59, dx AML M4 12/03, Induction, fungal infection skin and lungs, remission, four
consolidations, MRSA sepsis infection, kidney damage and dialysis, relapse dx CMML 8/04,
related allo SCT, 11/04, remission, doing well and still on dialysis -
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