A Transplant or Not ?
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- This topic has 33 replies, 4 voices, and was last updated 5 years, 10 months ago by Donna.
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April 26, 2018 at 8:50 pm #36318DonnaParticipant
Lillian……Dacogen is what my doctor said would probably be my treatment….infusion 5 days in a row every month. Right? He said that he has to tell me that it doesn’t work for all people, but if it works, I would get it the rest of my life. I asked how long it usually works and he said, “could be one year, could be ten years. We really don’t know”. That was his answer, although ten years sounds like a stretch. Have you gone for another opinion as to the treatment plan? Are you at a “Center for Excellence” or a very reputable place? Maybe you will be able to make a decision after you meet with the transplant people on 5/22. I hope so. I worry ahead of time. I have only been watch and wait. He said when my platelets get to 50,000 I will need treatment. I am a nurse but I am learning so much that I knew nothing about. Good luck. Keep communicating with us so we know how you are doing. Donna
April 26, 2018 at 10:44 pm #36322Lillian EvansParticipantDonna, My treatment plan so far has been Dacogen for 5 days then 3 weeks off. I have done this twice. If my white count is acceptable I will start my 3rd time of Dacogen, Monday. After I have completed 3 rounds Iam not sure what is next if I don’t agree to the transplant. Three doctors have told me. they didn’t think Dacogen would work past 2 years. If I agree to the transplant I would be going to the Buffett Cancer Center in Omaha, Nebraska.
April 27, 2018 at 10:17 am #36339DonnaParticipantLillian…..My doctor told me that Dacogen could work for one year or ten years, that they really don’t know. He also said that it doesn’t work for everyone, but he thinks it will be good for me. I was the one that asked about a transplant and was told I am too old for the big one but that I might be a candidate for the mini. Maybe we will talk about it down the road. I am not even treating yet. I am about to be 73 next month. Donna
April 27, 2018 at 10:23 am #36340DonnaParticipantLillian…..How do you feel when you get the Dacogen? Nausea, fatigue, weakness?? Donna
April 27, 2018 at 6:26 pm #36341Lillian EvansParticipantDonna, Got the results from Bone Marrow Biopsy. It has shown that after two rounds of Dacogen, my blasts have gone from 12 to 5 %. Doctor seemed pleased. Had my blood taken today, my red blood cells and platelets continue to rise, but my white count is way low. Was given a shot to possibly help and will return Monday for another blood test to see if the shot helped. Will probably not get to have chemo next week. While taking Dacogen I felt a little tired, but no nausea maybe a little weakness.
April 27, 2018 at 7:11 pm #36342DonnaParticipantLillian…..I am happy for you. I think it is very good that your blasts have gone down to 5%. Mine are only 4% anyway without treatment. Can you not have the chemo because your WBC is too low? Does this chemo seem like something I could drive myself about 50 minutes to and from or do you need someone to take you? Do you have relatives willing to donate for a transplant, if you decide to go that direction? I would consider that good news for you. I seem to think that the mutations are the important thing with me and the WBC and platelets. Do you have mutations? Mine are ASXL1, RUNX1, SRSF2 and TET2. I’m sorry to ask so many questions, but do you get any sedation when you get the BMB? Donna
April 27, 2018 at 9:15 pm #36343Lillian EvansParticipantDonna, I think you would be fine driving yourself. Dacogen is pretty mild from what I have been told. My siblings have either died or are too old, so I would get a match from a non relative. As far as mutations, it sounds like they have not been able to get that information from my BMD. Something about they get a good sample from the bone but not from the liquid. I really don’t understand all that. Yes I get sedation for the BMD. If I go for the transplant in Omaha I’am not sure they would, but I plan on really pushing for the sedation. I have heard bad things about being awake for the BMD.
April 29, 2018 at 12:28 pm #36361DonnaParticipantLillian…………I am in firm agreement with you. I get conscious sedation, so I am awake and talking to them throughout the procedure and I feel a little pressure, but it is no painful. I wouldn’t do it without sedation. My first doctor thought it was okay to do with Ativan and local anesthesia. No. Not me. I went to another facility. I also would not have family member to donate. I may not even be a candidate. I guess we’ll talk about that down the road. This watch and wait is difficult. Keep us updated! Donna
May 1, 2018 at 6:51 pm #36381Lillian EvansParticipantDonna, I agree not knowing exactly what lies ahead is very nerve wracking. My white count jumped clear up to 5 on Monday, so they went ahead with the chemo. So far I am feeling great. I seem to tolerate the dacogen very well. Hopefully this round will take the blasts down to zero.
May 3, 2018 at 8:52 pm #36400DonnaParticipantLillian………Wow…good news that your WBC jumped up. Will they be doing another bone marrow biopsy to check the blasts, or can they tell by blood work? It is very encouraging to hear how well you are doing on the Decogen. Do you have to travel very far for the 5 days of infusions? Donna
May 4, 2018 at 8:02 am #36401Lillian EvansParticipantDonna, Only travel 17 miles for the Chemo treatments. Today is my last treatment of the 3 times series. Still feel fine. They say next week is when I might feel pretty tired. They will be doing another BMB later to check the blasts. It does not show on the blood work. I will be seeing the transplant Dr. May 22. Really nervous as to what will be the outcome. If they have found a match I am sure they will be expecting an answer as to my decision.
May 4, 2018 at 9:55 am #36402DonnaParticipantLillian…..What is the 3 times series? You will be going to see about the transplant on my birthday. I will be 73. I told you my MD said I might be a candidate for mini-cell transplant also. As I think about it, it may sound depressing, but if I look at the whole picture, I don’t think I would want to go through it just to get a few years older. There’s a lot to consider. I guess it depends on your health in general and if you have family to care for you. My husband is 78 and my sisters and parents passed away years ago. I guess it is a decision to make when it is right in front of you, so I wish you well on your decision. I would think you could gather all the information on May 22 and then go home and think about it for a few days before giving your answer. Donna
May 4, 2018 at 8:23 pm #36409Lillian EvansParticipantDonna, I have had Dacogen three times. Each 5 days in a row. Between each Dacogen series I was to wait 3 weeks before the next round. One time my white count was so low they had me go 4 weeks before starting the Dacogen. I I knew how long the Dacogen would work, my decision would be easier. Two years go by pretty fast and I am well enough to really be enjoying my family and my life. Decisions, Decisions !!
May 17, 2018 at 9:06 pm #36499DonnaParticipantLillian……How are you doing? Your date with the transplant folks is coming up soon. In case I don’t get on this message board before Tuesday, I want to wish you well. Please keep us informed of your decision. Donna
May 17, 2018 at 9:35 pm #36500Lillian EvansParticipantDonna, Doing really well. Only problem Iam having is one foot and ankle swell pretty bad. Doesn’t hurt and I elevate it to get the swelling to go down. Yes the date to meet with the transplant Dr. is coming up. Pretty much have decided to go with the transplant in Omaha. Hope it is the right decision. Happy early Birthday to you. Our sons birthday was the 16th. How are you doing ?
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