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Mary4Mike
ParticipantBob, Yes, the well intentioned "How are you feeling?" can be difficult. I noticed that Mike, through the worst of times, always said "Great!" He said that by listing his ailments, only made him feel worse and that responding that he was doing well, actually helped to lift him up. Retiring probably took a lot of pressure off and it will enable you to enjoy your family and friends, especially that little guy.
Keep in touch and I pray you have a "normal"day!
Mary
ParticipantBob,
It is great to hear from you! I have wondered what is happening with you. So you had a relapse? Had they stored your donors marrow and did you have to go through the whole induction again? How are you handling the Dacogen? Mike took that and landed in the hospital 3 times because of fever and low counts. He is one of the few that I ever read on here that did not tolerate it very well. He did better on Vidaza than most do. Just goes to show you that this isn’t a cookie cutter regimen disease. Sorry to hear about the GVHD. How is it presenting – dry eyes, dry mouth, skin problems, joints? Mike is still taking the immunosuppressant Sirolimus (rapamune) but they are tapering. He has gone from 2 a day to one everyother day. So far, so good. He has eye issues and tightness in his hands. It was raising his cholesterol so I am glad he can lower his dose. He has to go in next month for a liver MRI because his ferritin isn’t coming down like they would like to see despite doing monthly phlebotomies. He feels good and doesn’t really want to be bothered with all this anymore. Oh well, it comes with the territory.Well, it sounds as if you have got a good outlook and handle on all of this. It also sounds as if you have a VERY good reason to say positive and to have a happy heart. That little guy sounds like he is well on his way to having you wrapped around his little finger! It is good that you are testing your self physically and eating well. You have something very precious to live for.
Keep in touch with us. Keep praying (He answers!) and stay positive. So glad you wrote!
Mary
ParticipantCaridiac evaluation (echo, EKG ), pulmonary function testing, and a LOT of bloodwork. Talking to social workers, insurance people, many forms to fill out. You must have a support system in place especially when you return home. The hospital will make you list just who these people are that will help, etc. They required my husband to see an eye doctor and dentist. It may be awhile before you can have dental work done because of low counts, low immunity. They need a baseline for eye health because eyes are a biggy for graft versus host. I can’t remember about having your hearing checked. If I think of anything else, I will post again. The people involved in these transplant centers are the best. They are upbeat and kind AND very knowledgeable. If you can, just put it in the hands of the Lord, and his peace will see you through this.
MaryParticipantAnne,
Happy to hear that things are moving along for you. I am sorry to hear that the Revlimid was making you sick, though. My husband was having transfusions that often right up to transplant. He had no energy ~ everything took so much effort to do. I pray that you will have the success and healing that the Lord gave my husband. We truly believe that He deserves all the glory for it and every other blessing in our lives. You are in my prayers.
MaryParticipantAnne
I found your comment about your doc’s view on iron overload very interesting. I have to agree that sometimes the "cure" is worse than the ailment. Is your doctor, Dr. Alan List?
BTW how are you feeling and is the transplant a go?
ParticipantMy husband experienced severe pain in his back during the Dacogen treatments. His did not come in waves, but was constant and nothing touched it. Chemo can be brutal. What are your husband’s liver enzymes at? Could it be gallbladder? They could never diagnose my husband’s pain, but it left after the treatments. I have to say that if your husband’s HGB was 11 than 9 than 11 (without any TX in between), perhaps the Vidaza has spurred his bone marrow.
No one one wants to end up in the ER, but don’t fool around if he spikes another fever that you can’t get under control. We would go into the ER and I would tell them he had febrile neutropenia from chemo and they would fast track him to a room without ever sitting down in the waiting room. Mike’s fevers were always accompanied with rigors. Wow, this is really bringing it all back. I feel your pain and frustration with this. It is hard to watch your loved one suffer. I pray that you make it through the weekend incident free and that his counts continue to go up.
All the best,
MaryParticipantAre the doctors saying that this drop in counts is due to the Vidaza? This is called the nadir period. My husband had similar "nadirs" after rounds of Dacogen, however, he never dropped to 4.8. He always had to be hospitalized because of fever and low ANC. He went through this 4 times before we decided not to try the Dacogen again. It never did anything "good" for him. Personally, and this is only MY opinion, I would be afraid to try another round of Vidaza, but then again, maybe your husband will rebound quickly and have a good response. You have to be proactive which I am sure that you are.
ParticipantHal,
I would like to extend my condolences to you and your family at the loss of your wife.Mary
ParticipantAnne,
I am sorry to hear that your brother is not a match for you, however, there is always the possibility of an unrelated match for you. How long did they say it would take to check out the registry? Thankfully, the blasts are down. I will pray for a match for you and that you can stay strong until they can perform a transplant for you.Mary
ParticipantLinda,
You have got to be one of the rare ones that stays stable without treatment. If you don’t mind me asking, how often do you have labs done, BMBs, and doctor visits? Do your doctors just look at you in amazement? What does your HGB usually run? And lastly, what supplements do you take? I think it is wonderful you can live with this without treatment…..and then to have a sister that is a perfect match is the icing on the cake. If my questions are too personal, of course, you don’t have to answer. It is just that I am intrigued by your unusual situation.Mary
ParticipantAnne,
I am glad for you that you found help and they have set up a plan of action. It sounds like you are in good hands. Are you feeling pretty good despite being in treatment? Is your port healing?
I will pray that your brother is a match for you. Is he your only sibling? My husband’s one and only sibling was/is a perfect match for him. We can find blessings through every life event, can’t we? You can always see someone in the clinics that are worse off than yourself. I always pray for them and give thanks.
Take Care~~~~~
MaryParticipantBob, What a great post. You are going to make it because of your attitude and outlook. A person can always find something to be thankful for and to find a blessing in our days. You have many blessings as you recognize. Your body may be weak now, but your resolve is strong. So what if you can’t taste things right now ~~~~~~~~~~ heck, you get to see your son everyday!!!! What a gift! Thanks for the well wishes. We are enjoying Mike’s retirement so far, all two weeks of it! What a gift of time and healing he received.
Keep healing and enjoy that baby. You and your family are in my prayers.
MaryParticipantAnne,
I am glad that you have an optimistic doctor because there is always hope. As long as you are willing to fight this I am glad that you found a doctor that is there for you.
My husband had trouble a couple of times with his port and they would have him arch his back and sometimes that would work or they would have to run a good amount of Heparin through it. I hope that I am remembering this correctly.
All the best with your procedure and treatments.
Mary
ParticipantAnne,
Are they going to replace the port? As you know, it is so much easier for treatment, blood draws, transfusions, etc. Have they been using your arm in the meantime? I pray that things go smoothly for you. It is a pretty quick procedure. My husband had a Mediport for his chemo treatments and they just gave him a local to implant it and to remove it. Perhaps this is an option. The port that he had for transplant (Neostar, I believe it was called) was a bit more complicated and he had to be sedated for it to be put in and taken out. Again, a pretty quick procedure. All the best with this and your Vidaza treatments.
God Bless to you too!
MaryParticipantBob, Just watched a few more of the Youtube events. How many have they guys done in your name? These guys go beyond the meaning of friendship! You are blessed. So many people have no one.
Mary -
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