new and so very confused

[kristyk]

Looking for advise and encouragement. My mother, age 63 was dx MDS/AML 2-25-05. (Let me say that about 2 years ago she started having very bad headaches..everyone thought it was related to her teeth and or stress as she had just lost my father and moved her mother in to care for her. headaches went away but she was tired and fatigued..again we all thought it was just a little dperession related to a couple of really tough years. CBC was normal but PCP thought she possibly had autoimmune disorder caled polymyalgia rheumatica and put her on steriod sept 04 . Then by fluke..in Feb 05 she had eye exam that found cataract. Her insurance is such that she needs her PCP to give referral to specialist so she went and they did a CBC by chance and the next day she was at the cancer center, being told she had leukemia.)they thought it was AML and she was on fast track to start induction chemo but at the last minute, BMP came back technically still MDS. So we have been waiting in no mans land since that time. No treatment at this time other than procrit weeekly. She needs transfusion abut every 7/8 weeks. She is beeing seen at a center of excellence. I’ve been amazed that no one has really ever educated us about this disease, and most of our knowledge has come from our own research. Her doc is sure that she is on verge of AML. Her last BM blast was 18 and blood blast was at 15. What little time we actually spend with doc, he thinks she is not good candidate for BMT although has typed her older siblings. His main push has been to wait until she meets criteria for AML and then to participate in clinical study for decitibine. Is there anyone out there who has tried this or knows of someone who has?? I, her daughter and caregiver/main support…feel as if we have been in perpetual state of confusion. last time I tried to pin doc down for what MDS classification she has.. he just says its AML. I do know that her risk score came back 1.5 and that her chromosomes are good. I keep reading about MDS and AML and wish i knew where we belonged! Docs keep saying what a “blurred” line there is between the two. Her WBC is way up to 24000 i think. Other than fatigue she seems pretty good. Platlets are good. We go back 6-13 for next doc app. I think I need to know what her type of MDS is or AML, and I need to get a better grip of what her count numbers mean from week to week, and I’d like to know more about other treatment options..I’m a firm believer in having plan A B and C! Doc seems to only focus on this clinical study. I would very much appreciate some advise..what do we need to be asking? And any words of encouragement would be great..we feel rather alone in this and that we have had no guidance other than what we have found ourselves. please and thanks.

[Terri]

Hi Kristy, My husband was dx Aug 03 and in and out of the hospital three different times. Our He started with 11% blast in marrow. The dr suggested we go to A Center of Excellence I will cut the story short, THe dr there made us feel terrible that there was nothing but supportive care. (We flew from Fl to NY to hear this) came back, Bob was hospitalized again his WBC were high and his blood was now showing blast as well. The local hemo did not agree totally with the NY dr and wanted to be more aggressive then just supportive care. He got Bob to start the Vidaza (Then it was still not approved so still in the 5 aza compassionate use) Any way He did six rounds (We also got a nutritionist who gave us a diet and tons of vitamins and supplements to help) His blast got down to normal level Dr took him off the vidaza and then seven months later his blast started climbing in the marrow (His wbc also started climbing. ) So now he is back on the Vidaza, he finished six rounds doing very well, Doctor is spreading out the time in between rounds to try and keep him on a maintenance schedule since the drug is so new no a lot of info.

Don’t give up Home Ask the Doctor about Vidaza, it does work differently on each patient but is very duable vs the heavy chemo. Our dr is trying to keep Bob from transgressing to AML he is RAEB – T
The vitamins and supplements I think help keep his blood counts as they are he is really doing pretty good.

There is so much information on this forum it has helped us considerably.

Good luck and God Bless

[Suzanne]

kristy, I think all of us find this disease very confusing to deal with.Dr’s really can’t give you exact information because there is a lot they don’t know although there have been a lot of possitive developments in the past few years. Nothing is helping everybody and everybody reacts differently to the disease and the treatments. I think it is easier to understand if you can absorb that there are no “right answers” anywhere, just some very educated guesses about what might work. Since you are at a Center of Excellence you are at least someplace that keeps up with new developments, is doing research on the disease, and has some of the latest trial treatments available. My experience at Hopkins has been totally different then Terry’s in NY. I did have a bad experience with NIH but Hopkins has been wonderful . I am about the same age as your mom. My understanding is that the definition of AML is now 20% blasts in the marrow so your Mom is close. AML that comes from MDS is a category in itself. The lines of what one has when are fuzzy.

I don’t know the criteria for Decitibine, was not aware that you had to have AML to take it. I do know it is one of the drugs that has had positive results. You can probably check the criteria at http://www.clinicaltrials.gov. They did not do a whole lot with me either until I developed AML-just monitored. My quality of life was good & they & I wanted me to have as much of that as possible. I tried one drug trial that had few side effects and did not help me. When I went into AML it was a different story. Then they moved very fast with induction chemo and consolidation chemo and then the zarnestra trial to try to give me a better chance of staying in remission. And it has worked out well for me. Don’t necessarily feel that your Mom is missing something by not doing anything now-especially if she is feeling pretty well. In the beginning I wanted to know about all possible treatments too and my Dr’s were nice enough to spend time answering my questions. Now I just look at what is right for right now. New developments happen all the time and the what if answers may be totally different when the what if gets here -if it does. I too like to have my bases covered so I do understand your feelings. Keep learning so you can help with advice and support when the times to make decisions come and If you really don’t think the Dr. you are dealing with is taking the time to explain the disease & possible treatments as well as he/she could, consider changing to another Dr. in the same center. There is usually more then one treating MDS and AML. Personalities differ and it is very important to feel comfortable and trust the Dr you are dealing with. Good luck to your Mom and think positive.

[Marsha]

Hi,
I too am sorry that you and your mom are going thru this right now. Get copies of her records, all labs and x-rays. Also you can get BMB results, at least on my BMB report it does tell what the diagnosis is. There is also the possibility of a second opinion. I was very fortunate to get an unrelated BMT last Nov. and didn’t have to wait around for further things to happen. I will be saying some prayers for your mom to get some answers.

God Bless, Marsha

[kristyk]

thanks to Marsha, Terri and Suzanne for responding. I must admit that I do not know my way around message board protocol and am not sure how to respond to those who respond! I just click here and there and see where this reply goes. I could use a tutorial on how this board works and what all of the icons mean! At any rate, I’m gratful to know that you are out there, and don’t feel so alone anymore. I’m humbled. I’m learning great lessons in patience! I remain hopeful always as I walk with my mother through this journey. I’ll keep posting, and hope that perhaps if she does participate in this clinical study for dectibine, that we can share her story and experience for those who will come in the future. Thanks Thanks Thanks! Kristy

[Terri]

We are always here for each other,

[Marsha]

Kristy,

It is wonderful that you don’t have to go thru this alone, we will be here for you and your mom’s support.
God Bless, Marsha

[sarah]

Kristy, know that we are here for you and each other. You have been given some great advice by others already. Will add your mom to our prayer list. Keep us updated.

[Kathryn]

Kristy,

Support, encouragement & advice are only a click away!

You and your mother are in my prayers.

Kathryn

[kristyk]

May I ask how you or your loved ones have been doing in regards to quality of life..energy level, travel, worry about catching something? Also for those who have reached remission status..do you find that the fatigue subsides and you feel normal(whatever that means!) I have gotten reputation for being the Wet Wipe Lady when I am at my mother’s house…enter at your own risk as everyone gets a good scrub! I’m obsessive about keepng surfaces wiped down too. Am I over reacting? When I ask the doctor what we need to worry about right now they blanket statement “infection and bleeding” but don’t seem to clarify exactly what that means. It is so broad..practically speaking what have you all experienced? Thanks for all of the wonderful support and words of encouragement. Bravo to all of you and your courage. I DO beleive in angels!
Kristy

[Kathryn]

Hey Kristy, my father’s energy level has been tapering as his CMML has progressed in the acute phase, but he keeps moving regardless of how he feels. I really think that his continuing to move has made a difference for him. He gets up, gets dressed, they go to breakfast, run errands…He tend to get depressed if he stays couped up for too long…the distractions are good for him. His traveling days have come to a hault… he just doesn’t feel well enough right now, so my advise to you regarding that is Carpe Diem…. Don’t put off making memories. His appetite is non-existant, so he makes himself eat and he takes some supplements. Yes, we worry about him cating something. His system is so compromised, we wash hands A LOT, especially before touching anything of his!!! And my step. has a huge container of Clorox wipes handy on the counter! We limit our kids visits, especially when he is on a treatment, even though they are a bit older (teens), just in case they are carrying something. We just don’t want to take a chance….. Infection can happen fast, so you are doing the right thing w/ preventative measures. The doc. is probably referring to low platelet count when he talks about bleeding. My father’s count runs really low now and when it gets below a certain number he usually gets nose bleeds or his cuts won’t clot properly. There is also a risk of him bleeding internally, so he has to be very careful.

Best wishes to you and your mom,

Kathryn

[Jimbob]

Kristy,
Don’t worry about message board protocol. If you want to respond to someone just do it there – or not. We all know how difficult it is to respond sometimes.
As far a a clean environment is concerned the staff at the BMT clinic that treated me insisted that it was almost impossible to over do it. Before I was released my wife had the entire house cleared out, washed and wiped-down with an anti-bacterial. Ceilings, walls, floors, carpets, drapes, windows, all possiboe surfaces were done. Then, we are lucky enough to have housekeeping services covered by insurance and had someone come in 8 hours a day twice a week to help keep things clean and to watch over me the first couple of months after the SCT. Even now wwwwe have 2 days a week for 2 hours. For the fist 100 days after SCT, no one came into the house without taking off shoes, putting on slippers, wasing hands with Avagaard antiseptic handcleaner. With the kids, healthy of not, I wore a mask just in case but, if we knew someone had a cold, fever, or was not feeling well, they either stay out or away with a mask. Our grandkids now isnsit upon shoes off and hands disinfected as soon as thye come into the house. They are 18 months, 3 and 5 years old! Now I function pretty much like the average Joe except for fatigue. There were a few short periods when I thought I was getting over it but then it came back. The BMT docs said it just may be my new norm and I might have to get used to it. Finally my regular doctor ran tests and found that I was not making various neurotransmitters that the brain and cells need to function properly. I am on supplements to take care of that and getting closer to everyone else’s norm. I hope it keeps up as we are going on an one week Alaska Inside Passage cruise starting this weekend!

[Suzanne]

Kristy, My experience was different. My doctors did not seem to be as concerned. I found out more from others and the nurses did tell me no house plants(mold) and no animals. They did tell me to wash my hands frequently and cook food or eat things that I removed the skin. I wore a mask when I was in crowds(at the clinic)and when I saw my grandchildren-or saw them outside where there was plenty of air – and when my counts were really low and someone came in the house. They did wash their hands. I did no unusual cleaning.(was already using a detergent w/color safe bleach)I did not get on any public transportation & did not use public bathrooms except at the clinic.Stayed away from anyone running a fever or not feeling well but these thinge wwere pretty much my own common sense. The marker they seemed to have was under 500-1,000 neutrophil count for concern. I never caught anything other then the usual blood infection asnd lung fungus I got while in the hospital for the first round of chemo. The second round they did let me come home before my neutrophils hit the 500 mark. So again patients and doctors ideas really differ. I certainly have heard of others that got into trouble with infections. I believe I was kept on antibiotics when my counts were below a certain level.

[Neil]

Hi Kristy,
It takes a bit of time for the docs to figure out what is actually going on with a given patient. There are so many variables that are to be considered.
Having a doc experienced in treating MDS is essential. Appears this is the case with your Mom.
You might consider keeping a record of her counts. RBC, HGB, WBC, Platelets ,Balats, both marrow and peripheral blood. Yoy can spot long term trends quickly. I put mine on an Excel spreadsheet and then graph them. After 8 years it has gotten pretty big. I then put my 6 month counts on another chart/graph to see the longer range situation a bit quicker.
Decitibine is similar to Vidaza. It has been in use in Europe for several years. Since there is some difficulty getting on a trial, would push the docs toward Vidaza and keep the effort going with Decitabine in the event she does not respond to Vidaza. There is a possibility with Trisenox and Revlimid. Am not sure how they would work with her situation, but worth asking the doc about the best option/s.
Would also ask the doc how he/she plans to keep her blast level from increasing! This is an important factor.
Suspect they are waiting to see if AML develops since it can be easier to treat AML than MDS—-sometimes. Problem that frequently occurs is they get rid of the AML, but the MDS is still present. Then the circle is complete when AML returns.
I always write out my questions when I have a session with my doc. There is so much to consider, it is easy to forget something. Have also known of some patients who tape their conversations in order to be clear on what happened —as long as the doc agrees.
Neil

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