, , . , .

I have been through it all as have so many who write here. There is nothing but love here, so you can ask anything, vent anything, and scream at any time. We are so here for you and Ben.

Cliff

Sandra and Ben -- no problem -- quite a few people on this list are care takers and not patients. It is fairly common for the patient not to participate directly for one reason or another. Again, no problem -- we are here to help in any way we can either the patient or the patient through the care taker or the care taker themselves, who sometimes need more help than the patient. I might say that Ciff's wife probably needed it more than Cliff, but that would be a cheap shot. ;o) -- dave

Dave,

That would only be a cheap shot were it not true! I wish I had known about this website when I first got sick. It is not just a vacuum sucking in cold air and putting out hot air. There is such intense, heartfelt sentiment here. These are the types of people who could become friends for life.

Cliff

hi everyone , first i have to say you all are the strongest and the bravest ppl in the world. I am sorry but i am only a caregiver, my boyfriend has been diagnosed with AML a year ago , he is still fighting though it is very hard there have been some complications. I never lost hope and i pray each day for him and for all the ppl who are going through this journey. i will never let him give up i love him with all my heart and i hope thanks to god he will be better. i send love to all of you and be strong because life is worth fighting for.

Makedonka: no problem -- as we said to Sandra and Ben -- we understand totally that sometimes a caregiver is more comfortable using this list than the patient theselves. A year is quite a while -- I would expect that he has gone through several rounds of chemo, and has probably had most of the complications that all of us had at one time or another. Please give us as much info as you can on your boyfriend. There is a lot of brainpower on this list. I detect him might be depressed at this point. Can you give us a reason -- has he not been able to stay in remission? I don't mean to probe, and just tell us what you are comfortable with. But tne more info you give us the better we will be able to help. We are all praying for you and your man. -- dave

Makedonka,

I wrote my comment on another post before I got to read what Dave wrote. I second what he said. We want to help in any way we can and if you tell us more about the problems your boyfriend is having, we can help him.

Cliff

thanks Dave and Cliff, he was on chemotherapy for about 7 mounts and went into remission, but it came back and some of the abnormal cells have reached his brain and the doctors started him on chemo again but a lot more stronger dose. The abnormal cells were going down and the doctors were very happy, now we are waiting for the leukocytes to start going up but because this was a stronger dose chemo it needs more time to recover. He is a lot depressed and tired i know it is a rough road for him but i will be next to him the whole time and I hope he will win this battle. what i was hoping to ask was how long do you need to recover from a strong dose chemo? i would be very grateful if you can help me with some information. i wish you all the best and i send love to all of you. I am from Macedonia and I am sorry for my bad english.

My Macedonian Friend,

Your English is fine! The stronger the chemotherapy, the longer it takes to recover. What is the ultimate plan for him? Is he a transplant candidate? What is the status of his spinal fluid? What medications is he taking?

We are here for you.

Cliff

Makedonka: I agree with Cliff about your English -- its great. This really helps us understand the situation. I have never checked my records and did not really care way back when I was getting chemo just what all it was. However, my onc was extremely aggressive and I gave him implicit permissioin to either cure me or kill me. I was not interested in paliative care, although for older people who cannot withstand such treatment I would not rule it out (and that goes for myself in the future).

I am now about 69, and I can do about 30 minutes of really hard work -- was outside yesterday cutting on limbs with a chain saw -- but 20-30 minutes of that is IT. And I know it. I just detect when I have had enough and quit. I was not this way before my chemo, but hey -- I am 69, so what is normal? I don't really know.

I am 2 years and 8 months after recovering from my last chemo, and I am chemo only -- no transplant. Supposedly I had the worst form -- AML caused by MDS. They tell me I still have MDS, but that is only because there is not cure for MDS, so OK, I still have it. As long as it does not cause me any other problems I can accept that.

All this to say -- this is just one man's anecdotal stuff -- but I feel like after three years I am still not fully recovered. I feel like I am getting stronger every day, but cannot really tell from day to day -- but there are things that I do now that I would not dare to do while I was on chemo.

This is true of the blood numbers as well. My red blood count and platelets are way below normal, but they do not affect my life to any detectable degree. I ask my onc if the low blood numbers might account for my getting fatigued quickly, and she always says that could not happen. I am sure that some of my aches and pain and inability to recover from sore muscles are caused by the low blood numbers, but again, this is not causing me any life problems, so I just grin and bear it (as my dad always said).

As I recall (forgive me -- I have chemo brain as well) your husband is up in his late 70s. I would think that heavy doses of chemo at this point could be quite dangerous, especially under his current circumstances. I very highly recommend that you visit the Alternative Treatmens thread on this forum.

I do not want to take a chance on losing this message now -- so I will post the URL for the alternative treatments thread shortly. Please stay with us -- your husband is a unique case and in posting to this list you are adding to the overall body of knowledge on this subject. We are praying for you and your husband -- dave

OK -- here is the URL for the Alternative Treatments thread. If your husband cannot take chemo because of his age and condition, this is what I would strongly recommend:

http://www.dailystrength.org/c/Acute_Myelogenous_Leukemia_AML/forum/12635834-alternative-treatments-aml/lastpage

Take care -- dave

Dave,

If you are tired at 30 minutes, then do more. Your age is no excuse. I turn 60 (God willing) in December and can walk for miles and scale tall dumpsters with a single bound. So get out there and walk a few miles before it rains.

Cliff

Makedonka,
My most recent chemo, after relapse took longer for counts to come back. I sat with one of the transplant physicians this week and he showed me the manual count. It took me almost 28 days to start getting any meaningful count recovery. At Day 27 I was at WBC 500 and neutrophils at 123. Interestingly today, day 29 I am at WBC 900 and neutrophils 400 without medicinal assistance ( they did not want me to get neuprogen). I am awaiting the transplant and will undergo more rounds of chemo. Once you relapse, they give larger doses and longer treatments (that's my understanding anyway). MY platelets and hemoglobin, along with magnesium is also unpredictable, but the docs don't seem to worry about these numbers as much.
Thanks for telling is what is going on. I can speak for me, all information is useful and it makes me feel better about discussing my concerns and questions. Keeping you and yours in my thoughts.

Andrea

i can't explain how grateful i am to all of you Cliff Dave and Andrea for giving me this support and information. His ultimate plan is to have transplant the doctors are just waiting for his counts to come back to normal and if there are no serious complications he will have a transplant. From his last spinal fluid the results were positive the abnormal cells are going down and the chemo is working but because of the low counts he has high temperature and he has a lot of water in his body. the doctors are saying when his counts will go up it will come to normal and then he can have a transplant. i am very thankful for your help, i wish you all get better and healthier each day. Makedonka

Cliff -- OK - I just got back from walking around the house in the dark -- I am in the country and an armadillo is tearing up my place. I treat my place like a game preserve, but there are times where these pests have to get taken care of or they will overrun you. Armacillos also carry leporsy ... guess that means I better not touch the beast. Before that I bushogged about five acres and chainsawed down a dozen or so old peach trees. So, I think I pushed the envelope for today. No dumpsters out here, so you got me there.

Makedonka -- if the med people have a good plan, I would go with it. It is important that they are comfortable in what they are doing and that they don't get off stride. So, I would have confidence in them. Once the blood numbers come back everything will be much, much better -- it is the cause of all problems. -- dave

Wow Dave,

I can't believe you have armadillos on your property! I have never seen one in the flesh, but, as you mentioned, they can carry Mycobacterium leprae and who needs to have that disease! With our questionable immunity, we would get the lepromatous kind, which is horrendous. Are they aggressive animals?

Makedonka,

Don't worry if your husband is full of fluid. I used to call myself a water-balloon. They flood you with IV fluids, and, because your blood count is so low, you retain even more. If it gets uncomfortable, they can give him some Furosemide and he will get rid of a good amount of fluid. Protein in the diet is important, because it will help raise the albumin, which is the most important blood protein that acts, among other things, to keep fluid in the bloodstream and not in the tissues.

Tell him that we are all thinking of him.

Cliff