I've been away from my email for a few days relaxing at a cottage on a little fishing lake. I don't fish, but it is always relaxing to me to be near the water.

Therenback--I think of you every day struggling to make the decision about a BMT. It's not an easy decision. Do you have a related donor (or you may not even know this yet)? Is there some other information I can share? I know that I, like Abby, spent a lot of time getting educated about the process and frankly, it was so daunting. The doctors have to tell you all the possible worst case scenarios so that you can make the most informed decision. I am always happy to hear about the people who have had BMT and did not experience any GVHD (and there are many since I was told that GVHD shows up in only about 40% of cases with related donor).

Abby-- Thanks for sharing about your GVHD. Are your intestinal problems a daily occurrence or are there some days when you feel okay? I felt bad every day for months but have had some breaks in the nausea during the last 2 months. Also, I don't feel AS bad these last two months (with the exception of a week here or there) as I did earlier. Again, I'm not sure how much of my nausea in the first 3 months was due to the experimental chemo drug I was taking for the first 100 days after transplant. Doctors told me that I have chronic low-level GVHD.

I had very elevated liver enzyme numbers last month pointing to GVHD of liver. Rather than put me on the "dreaded steroid treatment," the docs radically increased the immune suppressant levels. That worked and I believe the increased immune suppressants also decreased my nausea. Well wait and see what happens when Im weaned off the immune suppressants. In the meantime, I needed a pic line inserted and have a daily IV of an anti-fungal to ward off any fungal infection while my immune system is so suppressed. I was so happy to get chest catheter removed and be free of the tubes that I was rather bummed when I had to get another pic line. Now, after two months, Im adjusted and it doesnt bother me at all. Ill have to remember that what I dreaded before, Im well-adjusted to now! Should only be a few short months more of the IV!

Only other signs of GVHD that Ive had besides gut and liver are skin rashes, a little light sensitivity in the eyes, and some thrush-like symptoms in the mouth (no sores, but dry mouth and white coating). Everything but the liver and nausea were mild and pretty inconsequential. I dont have a problem with any of these other symptoms now and hope to see the liver numbers even lower when I get blood work next week. Only the nausea sticks around. Sorry to hear about your mouth/throat sores from chemo. I had those on two occasions before the transplant and glad they are a distant memory for me.

I think that getting through this first year is monumental (7.5 months already!), and while I hoped not to have any chronic GVHD, I feel as though it won't stick around forever.

Therese

Therese -
Thanks for the excellent post sharing your experience with BMT, both the good and the bad. This is exactly the type of sharing I had hoped for when I started this thread, and thanks to all participants, it has accomplished all expectations.
For those on the chemo route, can report that a week ago I visited my doctor, and my counts were great with no sign of any problem. Saw my primary and we realized we had to be concerned with routine problems - that for the present AML was not my problem. Am I lucky - yes. Did my positive attitude help my condition - yes. We have to keep on keeping on.
Bless all of you. As I have mentioned before, you are all part of my extended family.
Keep the faith,
Ollie

Ollie,
Thanks for starting this discussion. I stumbled upon this site at a time when I needed to hear other people's experiences and share my own. I can easily see that a great group of contributors participate and I have found comfort and support from being part of the discussion. Thanks again for providing this opportunity!
Therese

Things have been slow recently ... wouldn't it be nice if there were not new leukemia cases? Seems like things come in spurts. If anyone has any updates, we are listening -- dave

Ollie, Glad to hear that your numbers were good. Hope that your health, beyond AML, is good. So glad you started this discussion.

Dave, thanks for you ready replies to keep the discussion going.

Abby, How is the joint pain in your hands?

I can report that my liver enzyme numbers (from GVHD of liver) continue to decrease as a result of increased doses of immune supressants. I think they will get to the normal range soon. Good report from doctors.

Theresa -- THAT IS GREAT -- we are so glad for your good news -- let's give thanks to God -- all good things are from Him. Thanks for keeping us up on your situation. I do not think there is a one-size-fits-all decition between chemo only or even BMT vs SCT ... could be best what the doctors at the particiular hospital/clinic have the most experience dealing with. We will be praying that things continue to improve -- dave

Therese- glad to hear that your liver enzymes are going down and you don't have to be on the dreaded steroids.

I have been on steroids since my first month out of transplant and have not been off them off. They tried to wean them and I slept 24 hours a day for 3 days and couldn't wake up so they had to increase the prednisone for awhile and try again.

So I just went to clinic today and here are my updates: The GVHD of the gut/ intestines is pretty much under control. And yes Theresa I had nausea and pain every day for months. We finally got that pretty much cleared up and the joint pain started. I got a cold from my daughter, which caused a GVHD flare with all my joints hurting, I couldn't even walk. Also it cause GVHD with my muscles and pain there. I also got dry mouth with some white covering and some mouth sores. All this because of a cold, which really knocked me out. So now I am back on prednisone for a few weeks and then hopefully we can start weaning back off. To add to the fun I have been nauseous after eating and stomach aches that last for about 45 minutes. The doctors are consulting with a surgeon to see if it a gallbladder problem, again, to see if it needs to be removed.

So those are my updates, GVHD flare ups, a cold, and possible gull bladder removal.

On the other hand my daughter is doing very well starting preschool this year and loving going to her "big school". So I just have to remember life goes on and eventually all of this will pass.

Abby

Abby -- don't let them do anything too fast. The med people want to deal with problems and so they prescribe, cut or do whatever they are trained to do. We love them because they saved our lives, but still, they can get you into as many problems as they got you out of. I think your problem seems to be low blood counts. Get that checked out. If it is then you need to stay away from people and all things that could have germs or bacteria and get those counts up again, Once that happens you will see these other things just gradually disappear. Please see if that is possible with your med team and keep us up with how things are going. Take care -- dave

Abby,
Really sorry to hear about the joint pain AND it being so extensive. My heart truly goes out to you. I didn't know about colds or infections triggering those GVHD flare ups. You've had a lot more experience with GVHD than me. Thank you for sharing your experiences. Gall bladder, too? Im sorry to see another thing on your plate. Interestingly enough, another person I know with AML had some issues with his gall bladder, too, during his treatment. I wonder if that is a coincidence or somehow related to treatment.

I have a couple of questions that I hope you'll feel free to ignore if I'm too inquisitive. Do you currently still take immune suppressants or have you been weaned off already? Do you take 32 mg of prednisone twice a day? I'm curious about how similar the protocols are for treating GVHD at various places around the country.

Ever since I read your posts, I have been so impressed with your strength as you have faced post transplant problems. I think my age has helped me in some respects to deal with AML over these past two years, and I marvel at your perseverance and strength at such a young age. I'm not sure I could have matched your strength when I was 30. Whatever the source of your resolve, it appears to be strong.

Therese

Therese-

So I am still on immune suppressants. I take 1 mg of tacrolimus in the morning and .5 in the evening. They are weaning me off of the tacrolimus. Last week I was on 1 mg in am and 1 mg in pm. Right now I am on 10 mg of prednisone every day and if I have a joint pain flare up then I take another 10 mg in the evening. I have a hard time with prednisone. I have been on as high a dose as 75 mg when I had intense GVHD of the intestines. They had a hard time weaning me off the prednisone, so I am not real happy to be back on it. I should be on this dose for another 2 weeks and then hopefully if the joint and muscle pain is less then I can lower the dose. Prednisone gives me the shakes especially in my hands.

I have found that protocols for after transplant and to deal with GVHD are different from hospital to hospital. In Boston there are three main hospitals that deal with cancer, Mass General, Dana Farber, and Brighams Women. All 3 have different protocols for BMT and GVHD. One of my friends goes to Brighams and she has restrictions that last a year, when I had ones that only lasted the first 100 days. So it all depends. My BMT doctor says its because he is nicer, but I think its just what your doctor is comfortable with and how you are doing as an individual patient. My friend also had a cord blood transplant, while I had a related donor, so that is different too. I think protocols also depend on which type of AML you have. There are many types and I have one that is rare and they don't know much about it. It is not as bad as some and not as good as others. There is not much research on whether consolidation chemo or transplant is best for my type of AML. I went with transplant because I had a related donor and because it had the best statistics for a cure, which at my age I was going to fight for.

I would say my strength in dealing with this is due to my beliefs in God and Jesus and drawing strength from them and my family support and looking at my daughter every day and knowing I have to fight for her. My daughter is adopted and already had a biological family that could not take care of her. She can't lose another parent, it would just be so unfair. So I fight for my daughter.

Therese, I was wondering about your blood counts. Mine are not great especially my hematocrit and red blood cell count that is still very low. I was wondering if yours is coming back. My platelets are low, but not as low as my red blood count and my white count varies but is staying around 4.

Dave- as for my blood counts, they are low. I had to have a transfusion at clinic on Monday. The first time I have had a transfusion of my new blood type, A+. My white count is low and so are my platelets. So we are back on the hand washing and sanitizing regiment and people who are sick have to stay away and I am wearing a mask around potentially sick people or in crowded places. So hopefully I will not get sick again and get my counts up.

Sorry for the long winded post everyone.

Abby,

Thank you for all the information.

My counts are good (I wish I had specifics but didn't get a print out this week). My platelets are 95 and my hemoglobin is 11 (neither of these are super low and don't concern my docs). I can't recall what the red blood or hemacrit was but I believe that they were normal or near normal. I'm going out of town for a couple of weeks and won't have more blood work done for a while. I'll take note of those other numbers next time I go. I do know that my white count (around 4 or a little higher) is getting into the normal range as well as my ANC. Ive not been anywhere close to needing a transfusion recently and was sorry to hear that you needed one.

I will start getting weaned off the tacrolimus (again) starting on Oct 19 and they will do it over several months. I take 6mg per day (3mg in am and 3mg in pm). The high doses are why I have to take a daily IV of antifungal to ward off infection (and I still have to do the mask in crowds and stay away from sick people etc.). I also can't eat strawberries or raw broccoli or eat any fresh fruit or veggies in restaurants...the usual restrictions I suppose for being more immune suppressed at the moment. Hand sanitizer is always near since infection is my biggest threat now.

Very interesting information about the protocols. I went to the University of Michigan for my transplant and follow up care.

This is absolutely no consolation but my doctor told me at my last bone marrow biopsy that when GVHD is active, the risk of a positive leukemia result is dramatically lowered. Ive kept that in the back of my mind on the nauseating, cant eat, have-to-lay-down days. Not sure that it raised my spirits much but it was good to know.

About your inspiration and strength. Thank you for sharing your sources of support. I have thought of you and your daughter and other patients with children at home and the special challenges that represents. I see also from your writing that you are bolstered and resolute about getting well from having a young daughter. As a mother, I can at least imagine your feelings even if I dont KNOW your experience firsthand and all that it must entail. I believe your daughter is lucky to have such a mother as you and I know that you must feel so blessed to have her and your faith. Your family support has surfaced more than once in your writings and Im always happy to read the posts where people talk about their caretakers and helpers (or are caretakers themselves).

Please take care and know that you are in my thoughts and prayers.

Yikes! I dont seem capable of writing a short posting!!

Therese

Abby -- if your blood counts are low just about everything can be traced to that. Take good care of yourself and track your blood counts and I think you will see most of your problems just disappear when they get back up. If they go in the wrong direction then see if you can get a transfusion as a short-term fix. Hopefully things will start going in the right direction shortlly, but for now, please do not take any chances at all ... you know the drill. We are pulling for you and Theresa -- praying for you too. Thanks for keeping us up -- dave

Thanks Dave. I know that I have to be careful and follow all the rules. It is getting better and I am not in anywhere as much pain as before. still tired, but I know that lack of energy is a way of life for right now and I will at least get back to my previous level some time soon. so hopes and prayers to everyone out there.

Abby

You have to be patient. I hate to say anything against what your med team is recommending, since they know best. But you have to be careful because they seem to always want to do something or give you something. Sometimes it is just a matter of time for your counts to improve and all will be well. If they do improve and you still have a problem, or if they don't improve after too long a period of time, that's a different subject.

But mine were always slow in getting back to "normal" -- in fact, they never have gotten back to normal -- RBC, platelets and Hgb are all below the normal range. It is not causing me any problems because they are high enough to be out of the critical range, and they are also stable. So, I will just keep on trucking.

Great to hear from you -- please keep us up on your progress -- dave

Dave and all -

To throw in my two bits, though only 6 months out of chemo, I also find the road back to "normal" is slower than I would have believed. My counts are almost back to pre-AML levels, that is all within normal range. Still get tired easily and out of breath with moderate exercise. Just do a little "physical" work daily being sure not to overdue it. Now my only question is what aches and pains are due to AML & chemo, and which ones are due to getting a little older. After all, as I told my doctor, I have never been this old before.

Theresa, very glad to read your update. Keep them coming.

As always, pray for t he successful recovery for all in our little "family."

Ollie