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Bone marrow transplant for AML

xuelan
Posts: 23
Joined: Jul 2012

I just want to talk with others who have had bone marrow transplants for AML.

overland_traveler
Posts: 3
Joined: Jul 2012

Hi Xuelan,

I just had an unrelated donor transplant January 18th, 2012. I had AML, M2, and had no choice but to have a transplant to survive. I would love to answer any questions, or help in any way. Also, I am a young adult transplant recipient, and that makes a big difference I believe. Please, let me know of any questions you have, and how I can help. It is a long, long, long, road to recovery, and even after 6 months, life is a struggle. But it seems to be doable, and I want to believe worth it, but my gods, I couldn't think of anything more difficult or painful. My heart goes to yours and I support you.

Best,
Overland_Traveler

xuelan
Posts: 23
Joined: Jul 2012

He overland,

I am going on my 11th month post T-cell depleted transplant (allograft). Would love to compare notes. It is a struggle, but mostly a positive experience once the worst is over. Let's correspond.

xuelan
Posts: 23
Joined: Jul 2012

You know, Overland, I was thinking that maybe I could help YOU with any questions. I just realized that your transplant was 2012 and not 2011. (Maybe the TBI fried my brain a bit. Jut kidding). It is such a surreal nightmare to get this diagnosis, but I too was given little choice but to have the transplant. I actually failed the first induction and had to go through the torture a second time. I was septic with the first go around and it didn't even do the trick. The second induction worked and I went through consolidation without too much horror. The transplant was from a German donor (thank God for him) and I have slowly made progress. Would love to correspond with you. We are now members of the same club.

xuelan
Posts: 23
Joined: Jul 2012

Doesn't anyone want to share his experience with AML and the BMT process?

nempark
Posts: 574
Joined: Apr 2010

My daughter has ALL and did not do a BMT so I really can't say much on this subject. I know how you feel though because on this board it is a task to get any answers. I don't know why. My guess is because quite a few are youngsters. But I read your other post and my daughter's situation was almost the same as yours. She failed the induction and the second round was not called induction it is just chemo protocol and is 8 treatments. 8 treatments of fire and brimstone. My daughter was septic on her third chemo and that was quite a beast, it almost killed her. Anyway, if you would like to keep in touch wit me I would more than happy to comfort you during your journey, a journey that we must have the faith and courage to conquer. There is a God and in the Bible His name is Jehovah. He has made this journey for me and my daughter bearable and we are relying on him to give us the endurance to face what ever is in store for us. When I say my prayers to Him and ask for his guidance, not only pray for my family, I pray for every one who is afflicted. I will read more of you posts and hope you are doing well and managing to conquer this monster. Please keep in touch. Be well my friend.

xuelan
Posts: 23
Joined: Jul 2012

Thanks for your sentiments Nempark. I could not agree more. Although I am a Jew, I do believe that we pray to the same God and that He does watch over us. It is sometimes difficult to reconcile His love and the occasions that "bad things happen to good people." How old is your daughter and how is she doing now? We must have faith, or none of us will get through all of this. You sound like an amazing parent who has stood by your daughter during all of her suffering (and it is awful). My children have stood by me, as has my wonderful wife, brother, sister, and parents. You be well too.

nempark
Posts: 574
Joined: Apr 2010

Of course we do pray to the same God and he watches over each and every one of us. I must commend you for having faith and believing in God not many people these days do. I do not believe that bad things happens to good people. This is what I believe and I know as you mentioned being Jewish, you are familiar with this Scripture:

Ecclesiastes--For everything there is an appointed time, even a time for every affair under the heavens: 2 a time for birth and a time to die; a time to plant and a time to uproot what was planted; 3 a time to kill and a time to heal; a time to break down and a time to build; 4 a time to weep and a time to laugh; a time to wail and a time to skip about; 5 a time to throw stones away and a time to bring stones together; a time to embrace and a time to keep away from embracing; 6 a time to seek and a time to give up as lost; a time to keep and a time to throw away; 7 a time to rip apart and a time to sew together; a time to keep quiet and a time to speak; 8 a time to love and a time to hate; a time for war and a time for peace. 9 What advantage is there for the doer in what he is working hard at.

I am happy to know that you have a great support team which is super important. My daughter is 45 and started her treatment in December 2011, now almost 9 months since dx. This was so traumatic for us she had to give up her Condo and moved back with us. She failed the induction and was started on a multiple chemo protocol which xuelan is real toxic. In July she got an infection which almost killed her, her blood levels and platelets were at an all time low, blood pressure dropped dangerously and the Rapid Response Team had to be called in. We are Jehovah's Witnesses and we do not accept blood transfusions, we use alternatives such as Procrit. The Docs said that she would not make it without transfusions but fortunately, she pulled through. Her CBC went back up and she was feeling much better. Last week she had a bone marrow test and the Doc said from what he saw in the office it looked 90% better than the last test but will still have to send it out for further testing. The results came back better than he thought, but will not say that she is in remission. She just finished her 5th chemo and is normally hospitalized for a few days for the infusion. Following these infusions she gets EXTREMELY TIRED sometimes even too tired to eat and becomes lethargic. Well I think I have written too much now, so to answer your question about how she is doing, I think overall she is getting better, but it is a long journey and very difficult for a mother. Thank you for the compliment. I wish you continued success in your treatments and a long and healthy life with your wonderful family.

xuelan
Posts: 23
Joined: Jul 2012

Dear Nempark,

I have to say that your note made me rather tearful. There is nothing like a parent's love for his/her child. God bless you for being there for her. I find your knowledge of the Scriptures to be very uplifting and am familiar with the beliefs of Witnesses. I never completely understood, however, why transfusions are not allowed, even if they save a life, since they harm no one. Without the few transfusions that I received during my inductions, consolidation and transplant, I would not have survived. I even had two horrendous nosebleeds when my platelets were low and would not have stopped bleeding on my own. Procrit takes a while to work, since it is a factor that stimulates the red blood cell precursors to mature into functional red blood cells. PLEASE explain to me the reasons that Witnesses cannot receive blood or blood products. Your faith is a beautiful and committed one. I just want to understand more!

Eating is critical for recovery and the maintenance of nutrients that are necessary for blood production and muscle strength. I can certainly understand why your daughter often doesn't feel like eating. My recommendation is to give her SOMETHING (ANYTHING!) that she can tolerate and give it frequently, as long as she is not nauseated. When I wanted to get out of the hospital and was not eating, I knew that being with the people that I loved would help me. So, I am embarrassed to admit, I would throw my food down the toilet when the nurse was not with me, so that they thought that I was eating enough to leave the hospital. If they only knew! But it was a gamble that paid off. Between my wife, kids, and wonderful sister, I was encouraged to eat. Food tasted horrible, but I ate. I have gained back all of my weight (and actually would like to lose some!!!!)

I don't think I mentioned previously that I am a physician. That makes it a bit harder to take treatment without really knowing the details or statistics, but for my peace of mind, I have decided that I must have faith in God and my doctors and not try to minister to myself, except to my mind. I do not read statistics. I only read about things that I actually can control to some extent (e.g. exercise, diet, taking my medications). The rest is in "higher hands." I trust my doctors and do what they say to the letter. I think that is why I have done so well.

CB

nempark
Posts: 574
Joined: Apr 2010

Xuelan: OOPS

nempark
Posts: 574
Joined: Apr 2010

Xuelan:

nempark
Posts: 574
Joined: Apr 2010

Xuelan: Hope you are in good spirits along with the family. My daughter as I mentioned just finished her 5th chemo treatment and is now feeling the after effects. We go every day for her shots. Leukine, Numega and once a week Procrit. You asked about the reason that we do not accept blood, I will attach an article and hope that will give you some insight. The article does mention God's name (Jehovah) quite often and I know that the Jewish community does not use this name to address God. Please bear in mind, that this is what we have learned from the Scriptures and in no way intend to offend our listeners.
The Scriptures cited in the article are taken from mainly Genesis, Deuteronomy, Leviticus and Acts.
Are you familiar with hemodilution, cell selvage and centrifuge? By the way, my daughter is being treated at a hospital where they perform bloodless surgery and respect our choice of no blood transfusions. It is also now confirmed throughout the world that most patients who do not have transfusions are less likely to have complications.(not in your case). Here is the article:.

Jehovah, to whom we owe our lives, decreed that blood should not be consumed. (Genesis 9:3, 4) In the Law for ancient Israel, God limited the use of blood because it represents life. He decreed: “The soul [or life] of the flesh is in the blood, and I myself have put it upon the altar for you to make atonement for your souls.” What if a man killed an animal for food? God said: “He must in that case pour its blood out and cover it with dust.” (Leviticus 17:11, 13) Jehovah repeated this command again and again. (Deuteronomy 12:16, 24; 15:23) The Jewish Soncino Chumash notes: “The blood must not be stored but rendered unfit for consumption by pouring it on the ground.” No Israelite was to appropriate, store, and use the blood of another creature, whose life belonged to God.
The obligation to keep the Mosaic Law ended when the Messiah died. Yet, God’s view of the sacredness of blood remains. Moved by God’s holy spirit, the apostles directed Christians to ‘abstain from blood.’ That command was not to be taken lightly. It was as important morally as abstaining from sexual immorality or idolatry. (Acts 15:28, 29; 21:25) When donating and transfusing blood became common in the 20th century, Jehovah’s Witnesses understood that this practice conflicted with God’s Word.
Occasionally, a doctor will urge a patient to deposit his own blood weeks before surgery (preoperative autologous blood donation, or PAD) so that if the need arises, he could transfuse the patient with his own stored blood. However, such collecting, storing, and transfusing of blood directly contradicts what is said in Leviticus and Deuteronomy. Blood is not to be stored; it is to be poured out—returned to God, as it were. Granted, the Mosaic Law is not in force now. Nevertheless, Jehovah’s Witnesses respect the principles God included in it, and they are determined to ‘abstain from blood.’ Hence, we do not donate blood, nor do we store for transfusion our blood that should be ‘poured out.’ That practice conflicts with God’s law.
Other procedures or tests involving an individual’s own blood are not so clearly in conflict with God’s stated principles. For instance, many Christians have allowed some of their blood to be withdrawn for testing or analysis, after which the sample is discarded. Other more complex procedures involving one’s blood may also be recommended.
For example, during certain surgical procedures, some blood may be diverted from the body in a process called hemodilution. The blood remaining in the patient is diluted. Later, his blood in the external circuit is directed back into him, thus bringing his blood count closer to normal. Similarly, blood that flows into a wound may be captured and filtered so that the red cells can be returned to the patient; this is called cell salvage. In a different process, blood may be directed to a machine that temporarily carries on a function normally handled by body organs (for example, the heart, lungs, or kidneys). The blood from the machine is then returned to the patient. In other procedures, blood is diverted to a separator (centrifuge) so that damaging or defective portions of it can be eliminated. Or the goal may be to isolate some of a blood component and apply that elsewhere on the body. There are also tests in which a quantity of blood is withdrawn in order to tag it or to mix it with medicine, whereupon it is put back into the patient.
The details may vary, and new procedures, treatments, and tests will certainly be developed. It is not our place to analyze each variation and render a decision. A Christian must decide for himself how his own blood will be handled in the course of a surgical procedure, medical test, or current therapy. Ahead of time, he should obtain from the doctor or technician the facts about what might be done with his blood during the procedure. Then he must decide according to what his conscience permits.
Christians should bear in mind their dedication to God and obligation ‘to love him with their whole heart, whole soul, whole strength, and whole mind.’ (Luke 10:27)
Professor Frank H. Gorman writes: “The pouring out of the blood is best understood as an act of reverence that demonstrates respect for the life of the animal and, thus, respect for God, who created and continues to care for that life.”
Please let me know what you think. I will surely respect you thoughts on this. Be well my friend.

xuelan
Posts: 23
Joined: Jul 2012

Nempark!

Thank you so much for your explanation! I now understand so much better about the prohibitions related to blood products. Judaism also has many restrictions about organ donation,autopsies, tatooing etc. Comparative religion has always been an interest of mine, especially because I believe very much in God.

Be well.

CB

howell2003
Posts: 1
Joined: Mar 2013

Hello nempark! Here i am sitting and googling none-blood marrow transplant and your comments have come up. Could you please let me know if you are still using this board etc? I'd love to get some experiences. I am in the process of being diagnosed with MDS and a marrow transplant is the only cure apparently. I'm 35 with two children, and I live in australia. The hospital liason committee is being great, and there are two drs in Brisbane near me who've done it before, but I'd love a person who's been through it to chat to as well if possible. I hope to hear from you soon. Thanks :)

Duke65
Posts: 1
Joined: Apr 2012

my husband is day+20 following BMT for AML. Any hints or tips or comments would be helpful. Keeping him positive is job 1 for me. he is struggling with eating. Any best tips (besides faking and flushing?) I believe he'll improve upon leaving the hospital too.

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