Good Morning Dave,
Are you dealing with any cell count issues? I am wondering if this is going to be a life long thing. I am ok with it, just would like to know. But we are back to the same ole thing, living day to day. I am getting much better at it. At first it made me crazy.
Thank you for your prayers. Know that you also are in mine.
Lily

Lily,

Please be positive. Everything that Dave says is right on target. I am now 60 and 1.5 years post transplant. I really was not given a choice and I just let the surreality of the situation carry me through. Unlike you and Dave, I have not read about my disease (AML), even though I am a doctor. Nevertheless, I am not an ostrich. I listen to what my doctors tell me and never challenge them. I know far less than they do about oncology and feel that "a little knowledge is a dangerous thing." I am happy that there has been an improvement in your counts. Go with that thought and keep the blinders on.

Lily, I wonder whether you are reading this and saying, "Wow, he is a flake!" Trust me, put your faith in God and your doctors --- know your limitations and keep pushing for the gold ring. I am no Pollyanna, but I do subscribe to the notion that positive thinking makes us healthier. I do not want to read about any big "H" ideas from you. You have those adorable grandchildren. Think of them as you creep closer and closer to good health.

Cliff

Thanks Cliff -- you are always so enlightening and positive.

Lily -- I don't know that I would call them issues -- my platelets are only about half of what they should be and my red cell diameter is about twice what it should be. After six months I am going back for a blood test in a couple weeks. I am going to ask a number of questions about it, but the oncs tend to be non-commital. The reason I say they are not issues is because these things do not affect my life -- I kind of think I feel and live like the average 69 year old. I am going to try to find out what the indicators are that they are using to determine if I am in or approaching a relapse. Since I feel so good and I go out and work and hour or so every day that I can, I cannot imagine there being any problems, but I do want to find out what they are looking for. They say I do not need a BMB, but it would seem to me that after three years it might be good to take a look and find out what is going on. I expect that if the other indicators are stable that they will not recommend that. We will just have to see -- I will keep you all up.

Is there anyone reading who is more than a three-year survivor? I have asked this on other threads -- it would be good if we had some longer term survivors. I plan on being on for the duration, so if you all hang with me, we will have a 20 year survival party for me before too long. Time flies when you get a little older.

Take care. I will be praying for you Lily, and for everyone -- dave

Cliff..
Good to hear you are doing well after a transplant.
My sister had a transplant,with my stem cells, in 2001. We were a perfect match. Her transplant didn't do well to say the least. Gvhd big time, and she passed away. She had lymphoma. Different disease, different time. But it is still hard not to compare. There is so much more they can do now. And it has been so healing to read about the survival and the good outcomes from transplant on this site. I don't mean to bring anyone down with what happened with my sister. But I think it does show how far we have come in medicine.
I don't think you are a flake at all. I appreciate your input very much. Bottom line I trust the docs and especially God. I do deep breathing and relaxation in the morning. Visualizing the healing energy of God throughout my body. But your right, I need to work more on the positive.
Lily

Dave,
I know that one, the non-commital oncs. :-) I wanted them to give me some guarantees. I was asking for something they couldn't give.
I haven' gotten to where you are yet. Not letting the counts affect my life. I am getting better at it.
Has your cell counts been this way since your last chemo? Or is it something new? I agree with you that you should have them take a look. Please do keep us updated.
I, like you feel great most of the time. One would never know there was anything wrong. I feel better than before AML. So have been just enjoying that and not trying to look to far ahead. One day at a time.
I would love to hear of long term survivors. Yup, think I will just plan for that survival party. I am 60, so that would make me 80. Sounds good.
Lily...:-)

Hi. I came across this support group through reading Ondrea Levine: The healing I took birth for. I have been following the different conversations for a while wishing to contribute, but feeling too shy. Reading the different comments feels like eavesdropping into a closed group and stopped me from joining in. Moreover, living in the UK, I dont know the names of US medications and I am not conversant with all those blood stats. May be its also been a long time for me since my stem cell transplant 9 months ago.
Well, I shall tell my story anyway.
2009, aged 48, totally out of the blue I discovered a swollen lymph gland in my neck which soon was diagnosed as Burkitts lymphoma. The Doctors were puzzled as I am neither male, not HIV positive, nor a young African child who usually get this type of blood cancer. I had 3 months intensive chemotherapy as an in-patient which made me feel very ill, but I survived and got better. 5 months later I went back to work; I am a Yoga teacher and tutor co-ordinator in a busy central London adult education College. Soon after, aches and pains in various joints started up and nothing helped (I later found out this was due to those huge immature white blood cells getting stuck in the joints), neither allopathy nor alternative treatments; I was told by my GP, that it was due to the chemo and I had to live with it and would I consider choosing a different job, may be?
Months later I slowly began feeling more and more unwell, but by then I was on 4 monthly check-ups. I went travelling a bit and I had some premonitions. In Mallorca, if let very strongly that I would never see a Mediterranean country again and I visited my mother in Germany, who gifted me a night shirt and my first thought was, I can wear that in hospital. I ignored both my bodys deterioration and my mental weird feelings, but after the next blood test I was immediately whisked into hospital for investigations as my blood was rather abnormal, I remember the red blood count being just 6. After a couple of bone marrow biopsies I was diagnosed with AML caused by the chemotherapy of my first cancer. Apparently it happens very rarely, but I got it. I considered giving up as the inpatient treatment sounded horrendous, but the Doctors said I would have had only a couple of weeks left to live. I had only gotten married gain in 2008 and my beloved husband helped me to make the decisions of working towards surviving yet another rather vicious cancer one more time. I had my 2 induction chemotherapies; the first one was harder than the second and it was suggested that my sister in Germany should be tested for a potential stem cell donor. She agreed and turned out to be a full match, the next tests however proved that she did not weigh enough to be a donor. The British Doctors would have liked her to come over for further testing, but she refused. Well, we are not on very good terms now.
After that failure, I was told I needed an extra round of chemotherapy so that they could look for an unrelated donor. So, I had an additional 35 days in hospital. I was lucky and they found 2 good matches, but 2 weeks before the event, the donor, they had decided upon, had an accident and was no longer available; I waited 2 weeks while they got the other one ready who changed his or her mind a few days before the date. So, I was sent back into hospital for yet another 35 day round, while they started again from scratch. I was lucky again and this one followed through. I had all sort of problems by then with the extra chemotherapies, but after 4.5 month additional waiting and treatments after the 2nd induction, I had the transplant and the famous 100 days began; they let me home after 2 weeks, but I was so ill for so long. I had twice weekly hospital check ups to begin with, a taxi picking me due to the neutropenia. I am so grateful to the national health system which paid for everything, to my employer who paid me a full salary for 8 months and to the state which looked after me until I returned to work 6 months after Day 0. I am so grateful to my familys support and I could not have done it without them and of course to my unknown donor who I am allowed to contact after 2 years.
I no longer take it for granted that living a healthy lifestyle, being vegetarian, non-smoking, low alcohol intake and all that Yoga and mediation would keep me healthy until my 90s. I no longer look down at obese smokers and thinking they may never get as ill as I was and that there are probably many diseases which cannot be prevented by healthy living. I make sure I get enjoyment out of every day I am blessed with, reminding myself to be grateful even for the miserable, tired and cold moments of life as it is sure a great blessing to be still around and watch my kids grow into wonderful young adults.

Hi RenateUmmiah. Thanks for sharing your storie with us. We all have so many things in common and people who havent gone through this, cant understand sometimes.

I had written a post for both Cliff and Dave but it blow away, dont know why it dissapeard from my screen. Just wanted to say:

Cliff, wonderful example of "letting go". Im so lucky because my onco doctor is such a great great doctor but also a great person, and at the same time, his wife is my psycotherapist in dealing with leukemia-related emotional pain and concerns. I think that my situation is, first of all, in Gods hands, and secondly, on my oncos. Its their problem, not mine :) and I just have to do my best, pray a lot, trust God and follow docs indications. And come here to get strengh from all of you.

Dave: Since I got remission just 14 months ago, and my last chemo ended in April 2012 (9 months ago), you have a long way ahead.... My psycotherapist, who, as I said, is my oncos wife, told me about someone with +20 survival time. I think this person didnt have a BMT either. I also know of another case of +10 survival, with BMT, but another cancer showed up (a sarcoma). I understand this person is in treatment now.

I love you all my friends !

S

Renate,
Welcome, no need to be shy. We are all in the same boat here.
I am sorry you have been through so much. It just don't seem right to have to deal with another devastating blow of cancer. I am glad though that you didn't give up. You still have such a good chance for life. I also had a very healthy lifestyle. Healthy diet, worked out. Wouldn't touch a hamburger at a fast food restaurant. So I have to agree with you on the healthy lifestyle not preventing the cancer. But I do believe my strong, healthy body helped me to endure the treatment better. I am like you in enjoyng life to the fullest. Reality checked in with my AML. It can be all over for any of us in a heart beat. For the most part I eat well and I am back to exercising. I want to feel good. But I made bisquits and gravy for breakfast. Shocked the hec out of my husband. He sured enjoyed it though. We will probably wait awhile before we do that again.
I hope your transplant comes through soon. I can only imagine how stressful it can be waiting for that. And how hurtful that your sister did not come through. I gave my sis a stem cell donation in 2001. I was honored to do that for her. She must have some fears about it.

Hope you come back, there are a lot of folks with a lot of information and hope here. And happy to share it with you.
Lily

Hello Renate,

Thanks for your amazing story.. Aml basically rules your life, while it is not in remission.
You certainly have been through the mill!
I thank God you have had your transplant and you are over the worse
Is it 9 months since your transplant?
I am from England also and I know the social system is wonderful over there. (Canada"s health plan is also excellent)
It is lovely to have you in this group, please keep us updated on your progress.
My husband, Ben is 86 days post transplant. We are waiting for that 100 day milestone. Everyday is a bonus for us and we thank God for it.
Take care.
Sandra.

Lily -- my low platelet thing as well as the large red cells have been the same since my last chemo. As long as things stay stable they seem not to worry about it. I am going to ask them exactly what they would have to see in order to determine that I am falling out of remission. It really does not bother me that my counts are low ... they really do not seem to be having any negative effects. As long as I do not fall out of remission I am more than satisfied. I have an appointment in a couple weeks and will let you know. I am not anticipating any problems since I still feel great. Let's stay in touch -- dave

Ranate -- welcome. As as survivor you can give a lot of advice to those who are just starting to go through what you have already been through. I understand you are 9 months after your SCT. Are you still having any GvHD? Your detailed story was great and I am sure very helpful to many. I am a three year survivor of AML/MDS with a treatment of chemo only and currently 69. Take care and keep us up on things -- don't be shy. -- dave

Shimauta -- great to hear from you -- ten and 20 year survivors are rare since a lot of these great treatments that we have now just were not there back then. So it is very interesting that your onc knew of them. For the most part they do not keep records more than five years, and I think that is what they (the meds, that is) call long term survival (or perhaps survival period). The only reason that they chose five years is because most studies just don't go any further than that in tracking people. Hopefully everyone on this forum who is a patient now or if they are caregivers, then their patients, will have a 20+ year survival -- that is what we are all shooting for. As for contracting other cancers or other diseases, we do need to realize that this is almost expected. We are all going to have a number of different health issues. We just need to deal with them when they arise and hang tough. All with God's help, of course. -- dave

Dave, i understand your point, i also thought about it. Maybe they are real special cases. A cousin of mine, for example, was given 2 month of life, she had an advanced stage pacreas cancer. It was year 2000. She is alive and clean and in great shape. Though, she is a strong catholic and her case has been consider a miracle (sorry for the religous comment but thats how her case has been explained). On the other hand, in my country, cancer survivors keep going to their controls even after the official 5 years. I hope we will make as goog as possible and stay here, on earth, as long as possible too.

Dave,
The results of my last blood draw was an improvement in plateletts and red cell count. I am almost to normal. The white cell count is the problem. They are low enough to need weekly neupagen shots. So hopefully in time.

The appointment for you and blood draw is coming in a couple of weeks. Is that so? I am sending healing thoughts your way. That you are still in remisssion.
Just so you know, your input and caring has made a big difference in my life. I have more hope.
Lily

Shimauta -- great to hear from you both and I really appreciate your kind words. My next blood test and onc visit is the 13th of February, so a little over two weeks. I am not concerned -- I have been fairly active and handling it well, so am not seeing how there could be any problems. But I do plan to ask how they can tell just from a blood test if I am relapsing. Could just be the absence of blasts in the blood, or the fact that the numbers are stable although not really improving that much.

Lily -- glad to hear that some of your numbers improved. Of course, WBC are very important so I would hope you are doing everything you can to avoid infections. Are you below the neutropenic level? Even if not, I would still be very careful and stay away from people all that you can, especially now with the flu and all. They encouraged me to get a flu shot after I had pretty much recovered from my last chemo. I can see why if you are neutropenic that would not be a good idea. I sure would not get one without your onc knowing about it and giving permission. So, if you have not gotten one, that is another reason to try to avoid people.

I look forward to hearing from both of you -- take care and God bless -- dave