Phil,

Now that you have virtually made your decision, I think I can say that I would have done the same. Keep doing the eye drops even if it is difficult. It soon won't be. I have to say that when I was in the hospital, I let the nurses do it. I rarely pamper myself, and was feeling sorry for myself for being there and allowed them to do it. It was like going for an eye massage. Oh yes, if, when any of you are in the hospital, they give you the opportunity to get a massage therapist, go for it. She must have laughed when I told her my numb feet were bothering me and she worked on them and I fell asleep with my sister in the room. I felt guilty on both accounts and sort of rude, but hey, I was getting horribly annoying treatment the rest of the time.

Andrea,
Do not worry about your daughter getting you sick. Just insist that she (and you) use Purell and refrain from giving her the hugs that we all love to give our children. As my doctor always tells me when I get germphobic...."unless someone coughs right in your face or touches things that you touch without using Purell, you are OK. You don't have to sit there with a mask and gloves all day long." I have followed her advice and, as I said in an earlier post, I have had one cold in 14 months.

Cliff

PS: what do Ollie, Phil, and Eddie have in common?
THEY ARE ALL BACK!!!!!!!!! What a good feeling to have the whole "family" together again.

Phil -- on the eye drop thing. Try bracing your one hand with the other hand that holds the dropper to prevent it from getting any closer to your eye. You might make a fist on your forhead to do that, but always have it braced so that it is impossible to stick yourself in the eye. I had problems with it but just got used to it -- as I recall I had to do it every four hours around the clock. For sure it is worth it.

If anyone else is on eye drops and they tell you that you can quit after a couple days past chemo, don't believe them. The first consolidation I did what they said and quit and had bad itchy eyes for days -- felt like sand was in them. The second consolidation I tapered it off a little at a time. Maybe went to six hours, and for sure put drops in before going to sleep at night. I got it down to just once a day or so (if I felt like I needed more), and then dropped it altogether. They don't want you to overdo it because of the steroids in them, but quitting cold turkey is not the way to go either, and a few extra days is sure not going to hurt -- better too many than not enough.

Don't be concerned with your decision -- the important thing is that you feel right about it, which obviously you do. It is good to get resolved in these things and then just don't look back -- it will work out.

Take care -- dave

Ditto Dave's comments, Phil. Never look back, only forward! But don't forget to ask if you can get massage therapy. My feet were really affected by the treatment. The front portion of my feet are still numb and uncomfortable. The massage helped a lot.

Hope all is going well. Write as frequently as you can.

Cliff

Cliff -- this is interesting -- do you think it was the chemo, the radiation, the transplant ... what caused your foot problem? My main problem had to do with the constant saline solution they kept IVing into me to keep my kidneys from frying. Blew up my feet to twice their size -- had to get some special slippers to slip into so I could walk around a little. This disappeared completely after recovering from the chemo, but I still have some sharp short pains to my feet and ankles that started during the process.

My thought is that the sharp pains of 10-20 second duration were (perhaps still is) a side effect of neutropenia. I am no longer neutropenic but some of my blood numbers have never come back even close to normal. Guess the conclusions to all is -- don't be concerned if some things keep on giving us trouble as long as we can get along with them. My feeling is to not overly concern the med folks with little aches and pains because they WILL test the foo out of you until they find something, and my feeling is that I would prefer if it is not giving me some real problems to just let my own body deal with it. Thanks -- dave

Dave,

I don't know what the actual cause of the problem is, but it is annoying. When I was getting my treatments, my legs and feet also became very edematous. After my "resuscitation" in the ICU, I got so much fluid that my feet felt like snowshoes. I still have trace edema at times in the lower legs, although my albumin (the main colloid in the blood) has been very normal as has my blood pressure.

I didnt know that your CBC has not normalized after treatment. My last set of bloods (post-transplant) are indistinguishable from a normal person (and of course I never said that I was normal). For the first time, my hemoglobin was 14. It used to be 15-16 before I got sick. I am very pleased with my German model (Volkswagen) bone marrow. I know having 1/2 numb feet is a small price to pay, but if my kidney function turns out to be abnormal, I will not be very happy. When I got the gamma globulin for my continuously dropping ANC, the next set of bloods showed an increased creatinine. I am convinced that this is the culprit. The sad part is that the IVIG didn't help at all. What did help was the proverbial "tincture of time."

Whatever, comme les jeunes disent presque toujours, I am happy to be alive.

Cliff

thanks again everyone... Yeah.. they just have me stop the steroid eye drops when i get out of the hospital and rely on artificial tears and night cream and that just dont cut it. Ive been putting the eye drops and cream in all day everyday to keep the pain down, im thinking in a couple more days i should be good to go.

Im about 99% decided on not doing the trial. The coordinator "basically" tried to say that if i do the trial then i would get more "hands-on" attention during my transplant, but wouldnt change my care if i dont do the trial. Im skeptical on that one..

Phil,

I think it is a bit of BS to say that you would get more hands-on attention during your transplant. What are they going to do? Ignore you if you get standard conditioning before the transplant? I don't understand why your eyes are just so awful. What chemotherapy did you get and what was their explanation. The only time my eyes had a potential for problems was during and after cyclophosphamide. That was when I got steroid eyedrops. I have always had somewhat dry eyes, but they did not get any worse from my AML treatment.

Hope things are otherwise doing well. You will do great, skeptic that you are! LOLOL

Cliff

Cliff -- tell them that your bottle is low and you need another one if you are getting low. If you have enough for home then that is OK. They just let me keep mine -- of course, I was supposed to keep using it for a couple of days. Perhaps you can argue with them a bit to let you taper things off. This is terrible that they just take the drops from you -- what can it hurt to take them a couple more days? I can see they do not want you to take them for a couple extra weeks, but a couple extra days is not going to matter that much. Anyway, do what you can to get some to take with you. Good luck with it -- dave

Cliff:

Not being an MD like you I just tend to let my Onc and my GP tell me what is wrong with me. However I have a recent one that has not changed much at all. So here is the story (remember -- three years almost since recovering from my last chemo):

WBC 4.3 (OK -- normal 4-11)
RBC 3.28 (low 4.4-5.8)
HgB 13.2 (OK 13.5-17)
MCV 114 (High -- 80-96) -- don't know what this is
MCH 40 (also high -- 27-33)
Platelet 88 (this is the one that is abnormally low -- 150-400)

But they seem to marvel that I am even alive, and just say that the best we can do at this point is to wait and see, and to tell you the truth, at this point that is my preference. I do not want GvHD.

One thing that can be said -- they are stable -- have not moved 5% since my first CBC after chemo. Apparently they feel the blood test is sufficient to test for blasts. I asked her it I should have a BMB and she said no -- unless I wanted to volunteer for one of their novices to practice on. Hey, I want to be of help, but not that much ... I sure do not need an infection or anythnig like that at this point.

But hey, just like you, I am not complaining -- just glad to be alive.

Please feel free to give any med opinions on the numbers above -- it will not bother me ... you cannot say anything worse than what I have already heard. ;o)

If anyone suffering is listening in -- don't believe them ... I was in ICU once and the doc said "you are a very sick man." Yea, like I really needed that. Don't believe them -- you can and you will survive. Two things mean more than the medicine -- prayer and your will to live, in that order.

Take care everyone -- I am praying for all of you and the people that you are caring for, as I know most of us are -- dave

Cliff, yeah its BS, it kinda puts me in a awkard situation. Im gonna talk to them more about it on the 28th.

The chemo was every 12hrs everyother day of cytarabine, the doc said the cytarabine is whats causing my dry eyes. They give me steroid drops while im in the hospital and i have no issues but the day after i come home the eye pain starts.

Dave,

Im not doc thats for sure but ive learned a lot and how to read the CBC a little. Your numbers are a little low in areas, but, not that bad. Mine get worst than that after my chemo treatments, everything bottoms out.
The only concern i see is your WBC is low, so, be careful about getting sick and your platelets are low, that can be dangerous as far as bleeding and your blood not clotting up.

Phil,

I know you are being put in an awkward situation. Doctors don't like to be questioned. That is why some have a ridiculously poor bedside manner. Doctors are not God. Only God does not have to answer to you. So ask them questions. The other things that doctors can do is use jargon that the layman does not understand and is embarrassed to ask the doctor to rephrase. Do not get caught in that either. Here is a bit of dialogue:

PHIL: Doctor, I understand that you are doing a clinical trial, but I need to know why you believe that a reduced regimen would be a good idea. I understand that a reduced regimen might lead to fewer side effects from therapy and might, in fact, be safer for the patient. But what evidence is there so far that a reduced regimen will give as good results with regard to risk of recurrence, risk of infection etc.?

If you are in an awkward situation, then the whole thing is unfair and seems like undue pressure. Make sure you have answers to ALL of your questions. Do not feel that you are insulting the doctor. If he is insulted, then he is just a bit too pompous. (As they say in French, TANT PIS!) Every patient has the right to be totally informed and to make his own decision without pressure.

Hope your eyes are doing well.

Cliff

Dave,

Your numbers are interesting, but in no way concerning:

WBC 4.3 (OK -- normal 4-11)
RBC 3.28 (low 4.4-5.8)
HgB 13.2 (OK 13.5-17)
MCV 114 (High -- 80-96)
MCH 40 (also high -- 27-33)
Platelet 88

OK...The WBC are normal. I presume your ANC is at least 2, which is absolutely fine. You are a slight bit anemic, and are at a level that will not keep you from doing any activity. The size of your blood cellsm, the MCV is quite high. Large RBCs can occur with deficiencies of Vitamins B12 and folic acid. You really should have your blood checked for these to rule it out. MCV can also be up if there is some accelerated breakdown of the RBCs (this can be determined by looking at the reticulocyte count [immature RBCs the number of which rises when cells are being broken down [hemolysis] to replace the cells being destroyed. Your retic. count should not exceed 2%. There are also liver issues that can affect the cell membrane leading to large cells. Instead of worrying about it, I would increase my intake of folate through eating lots of leafy green veggies. The B12 level can be checked by a blood test. (Remember....when iron levels are low, cells get SMALL not LARGE, so you are not low in iron). The MCH (mean corpuscular hemoglobin is a calculated value that I find to be far less useful than MCV). Your platelet count is low and I would bed your platelets are somewhat large. This can be a primary bone marrow issue or due to sequestration of platelets in a somewhat enlarged spleen, or excessive use of platelets (doubt), or a mild immunological issue where there are anti-platelet antibodies. You will never have a bleeding problem with a level like this. So I wouldn't worry and just discuss it with your doc at your next appointment. The normal number of platelets is MORE THAN WE NEED. The number of platelets tends to autoregulate with a hormone called thrombopoetin, It is actually made by the platelets in response to a low number. The more platelets you have the less the thrombopoetin. Perhaps your system has reset in this regard.

Bottom line. Everything looks fine. You don't have to be textbook normal to be quite healthy. And if you numbers are stable, that is good. I agree with your doctor. If your numbers are stable (and they are) there is no need to go looking for trouble.

I would be happy as a clam at high tide, Dave.

Cliff

Thanks Cliff... trust me ive asked that exact question and the answer i get basically there is no documentation or results for the low dose chemo and thats why the study is being done.

Basically, i can go with high dose which has been proven or the unknown low dose. I wouldnt mind the lower dose knowing itll be easier on me in the short term, my main concern is relapse, then me looking back thinking i wish i had done the high. I dont know what can be done after transplant and if i relapse. I guess id rather throw everything i can at the cancer and if it comes back then i can say i did my best.

Phil,

See, already you are thinking the worst. It is better not to relapse and to have to be retreated. If they cannot give you one thread of data about the use of low dose, I wouldn't go that route. I volunteered for a study where they are looking at my blood. So I get extra tubes drawn periodically. I am not in a clinical trial. You are young and strong, so you can tolerate anything. As them what the DOWNSIDE is for going with standard treatment.

On your side,

Cliff