[kristyk]

I had not thought about blood infections. I do know that whenever she has a fever they take a blood culture. Is this how they identify if there is blood infection? Does anyone know?

Fran, have they talked about trying neopogen? They started that with my mom, no results yet though her wbc is .05 with little or no ANC.

Sara I remember when you posted about Charlie passing. This is an ugly disease. I hope you are doing well.
Kristy

[kristyk]

Thanks for support elle and Glen. Really good advise Eve and Lucy. I will ask about mouth sores and preventing them. Lucy, I have been concerned about the fluid overload…they are pumping her so full 24/7, I’ll ask about Lasix. I do know that she is peeing all of the time, so that is good. I’ll also encourage her to get up and moving, although she has been fighting some light headedness. They seem to have ruled out bleeding for the time being. She did show some small pockets of pneumonia in her lungs, hopefully we got it in time. Her ANC is 0 at the moment, oh dear. They started a growth hormone today, not sure what it is but will find out..they are hoping to stimulate some healthy cell growth. So far the docs all seem to agree this is chemo effect related with counts supressed and that she will rebound if she can stay supported. Gosh this sounds so much like the “typical chemo” with induction etc..just took months versus days. seems to me they told us no or little side effects expected with decitibine, which has been true until now, which is why the study is for persons over 60..a more gentle method. Not sure if I should be taking this as possibly good sign, after all I have read time and time again on this board and others that counts bottoming out is what you want with chemo, we just did not expect this with the dectibine. From the talk on the unit, it appears that this has been common for the dectibine patients.
Lucy i don’t have the counts handy but when she started decitibne she had just been dx AML from the MDS and If I recall she had 30% blasts, her white was way over 100! platelets low but over 100 and dropping, hemoglobin staying around 8.8 with transfusions every couple of weeks, Platelets dropped rather quickly with the chemo, white dropped below normal after about 4-5 months/cycles. Good Luck with your mom. I think my mom will be in hospital for awhile too.
take care you all. I am in hospital mode, getting good again at sleeping while in sitting position!
Kristy

[kristyk]

Janice
When my mom progressed she had something like 30% blasts in marrow. 20 or 30 is the criteria for AML, can’t seem to remember which. She too was initally Dx with RAEB MDS. They said she would progress within the year and she did 9 months after diagnosis. It seems when it did progress it did so very quickly, things changed in a weeks time. Anyway, yes when that AML was confirmed she was in treatment the next week. But then they had been waiting for her to transform to start the decitibine as the study was for AML. So we knew months before that she would do the trial as soon as the blast met criteria for AML. She has done really well all things considered. She is pretty active. We went to texas for a week. She does her running around. 2 months ago the BMB showed something like 4 or 5% blasts..that sounds better. She has had trouble though since that last BMB ( 2 months ago)with the low white and platelets. She just had another BMB yesterday and will know results next week. Of course the hope is that it still shows major decrease in leukemia/blasts. I hope. I will let you know. Thrilled this drug has been approved. I sure hope that your dad has an opportunity to give it a try…soon.
Kristy

[kristyk]

Janice
yikes, sounds like a bit of a mess. Hopefully Morristown can get it soon. I do know that drugs used in clinical trials, well everything has to follow protocol of the study, very regimented. Still with the FDA approval one would think access would be easier..I’m sure it will be. Good Lick
Kristy

[kristyk]

Hi Janice
If you have read any of my posts my mom has been doing the dectibine, exactly as they plan for yor dad for 7 months. she has AML though. I will say things have gone well, except for that just in the last few months the white and platelets have been very low. Platelets down to 5 yesterday so she needed to get some. I am concerned. However the chemo does not make her feel sick in anyway. She has felt quite good despite everything. So i wish you all luck. You are the only other to post about doing this treatment. I will be curious to see how it goes. Please share as you learn more and have some experience with this. I am hopeful.
Kristy

[kristyk]

Hi Greg
My Mom is doing trial of dacogen or decitibine. Doing well so far and is starting her 7th month/cycle. Don’t know about Vidaza risk/benefit but she has no side effects as far as feeling rotten after treatment ( 5 days of one hour IV each month to get the chemo). However has had low white and platelets for last two months. Going further between red blood transfusions and has had significantly lowered blasts in marrow.
Hope this helps. Good Luck.
Kristy

[kristyk]

Hi Frank
My Mom is currently doing a trial of the drug. She transformed to AML from MDS in Nov. So far so good. She is responding well with significant decrease in marrow blasts. However, as the article mentioned, she is having chronically low white and platelets. She is going on her 7th month/cycle next week. Her reds have been holding more steady, and she is going further between transfusions. Other than the low white and platelets, she has had no other side effects and does not feel sick at all after treatments.
Best of Luck
Kristy

[kristyk]

Hi Margot and all,
My Mom has had similar pain. Two epsiodes, once back in November that lasted about a week. And recently last month that lasted for about 3 weeks. She was prescribed several different pain meds including oxycodone. Nothing worked well enough to justify the heavy duty meds So she stopped the pain pills, didn’t like how they made here feel. They did put her on neurontin which she is taking daily. Either the pain stopped on its own or that med is helping.She feels ok for past few weeks. They did MRI on her back and results do show some bulging areas but they think it looks like normal aging degeneration/bulging. I don’t know if this is the cause of these periodic episodes of leg pain or if the MDS and AML is the culprit.. it does seem to be common with this cluster of diseases. My conern was that her leukemia had spread to her CNS and spinal cord or something, which I kow can happen, but that does not appear to be the case, at least i don’t think.
Glad to hear they will do MRI for Lee…best of luck and hope Lee can get some relief soon. Your dad too Paige.
Kristy

[kristyk]

thanks sdrake, lynette and Jody. I appreciate the encouragement. I am hopeful, though I don’t have the full report in front of me…still 4 is less than 30, certainly going in the right direction anyway you look at it.
I am wondering though about wbc which is 1.1. (odd how the tides turn, Will it come back up??? My understanding is that she will stay on this drug as long as it works, possibly for life..although low dose, I would think a monthly zap of chemo would never allow it to come up…any thoughts out there?
Kristy

[kristyk]

Hi Patti

although my mom did progress to AML and is doing low dose chemo (decitbine ) for persons over 60 trial, I know they are also doing same study with MDS at various centers. She hasn’t had many if any side effects thus far and she has been doing it for four months now. Her platelets fluctuate and she needs red blood tx every 2-3 weeks, but really doing quite well. Her last BMB in Jan was one of those they “couldn’t get much out of the marrow” ones…it was so packed..not good, and what they could get was white in color. She had one last week and the nurse performing it was thrilled because he got four nice viles of beautiful red blood out of the marrow and commented that she was “making blood again”. We won’t know blast count or results for a few more days but are taking this as good sign. So I guess my point is that it is possible that your mom could start producing again with a treatment that works for her. Perhaps this is not the end. I wish you all the best. Thoughts are with you

[kristyk]

Hi Janice
My Mom was diagnosed with RAEB-T this time last year. I too was discouraged when I went home and researched the disease, the survival statistics are dismal to say the least. I found info and hope lurking on this forum. People can and do live with this disease and the variety of treatment options availabe continue to prove promising for many. Your Dad’s overall good health otherwise is also great news. I can’t tell you how exciting it has been to see people on this forum report remissions and progress. My mom was also given the 9-11 month prognosis. She did transform to AML 11/05, however we are passing that awful time frame, and the thing is she is feeling good, pretty stable and the treatment she is doing seems to be working for the moment. There was a time when there was some hesitation when planning for “next christmas” or “next easter” or ” next 4th of July”, but here we are and we are planning, rather more significantly SHE is planning for future..Good Luck. Sounds like your Dad is going to great treatment center.

Lynette..how exciting is your post…yea. I am going to look into that trial, sounds hopeful!

Best to all
Kristy

[kristyk]

Hi Patti
I agree that protocols differ greatly. Really I think you hit the nail on the head for the sense of frustration I was feeling the first 9 months after my mom was dx with the MDS. I was having a difficult time just waiting for her progress to AML and felt this urgency that we needed to be doing something NOW. Since her dx she was being monitored by two doctors. Her local oncologist Dr. P, who made the diagnosis, supervised her supportive care those 9 months, and who referred her to his colleague Dr. D, the director of stem cell and bone marrow transplantation and lead hemotologist for the leukemia and lymphoma treatment center. Both doctors are with the same hospital system and cancer center, it’s just that local Dr. P practices at the smaller site out in the suburbs near my mom and is regular oncologist who treats all cancers, Dr. D “downtown” at the Big Center. 2-28-05 Dr P made the diagnosis( RAEB-t vs AML, the bmb results were sill pending) and sat down with us and did a diagram for her treatment, which was the Induction chemo. We went home to pack and await his call as he wanted her in a bed downtown ASAP to start the induction process. So we went home and waited and waited. He called late in the eve and essentially put on the brakes. He had consulted with Dr. D who obviously advised to keep Mom on supportive care and get to get her downtown to consult with him a few weeks later. ” we are not going to do induction at this time with you, we think you have MDS at this time and we can treat you with supportive care but I want you to see Dr. D to explore future treatment options”. I ask Dr. P, “what is the difference between MDS and AML” as at the time I had no clue to any of this, and he says “hmmm, frankly it’s the difference between and train wreck and a car wreck”.
Anway, Dr. P the regular oncologist wanted to jump into drastic treatment at the get go. Dr. D, the hemotologist, who once he ruled her out as transplant candidate, pushed to wait until she progressed to AML to start anything except procrit and hydrea along with supportive care.
So even between two colleagues under the same institution, I sense there was some initial differences on how to treat my mom. Ultimately I think Dr. P followed lead of Dr. D who is the expert and main guy for hemotology disease in our city.
Has Dr. D been “right”? I wonder often. I hope so. Is the protocol different from individual to individual? I don’t know. I have also done some research and have read that AML that transforms from MDS has poorer treatment response to chemo and prognosis than other AML’s. But I don’t know if that is related at all to whether or not a person has tried chemo’s while in MDS stage. It is perplexing to me!

I have babbled on again…but I think your thoughts were interesting and I too keep wondering does anyone( doctors) really know what they are doing for sure out there. One does wonder, but good to have some faith in your treatment team regardless!
Take care
Kristy

[kristyk]

Nicole
I just read your post from last week. I first want to tell you that I am sorry to hear that your Dad lost the fight and hope you are doing well.
What struck me about your post is that we faced a similar situation with my mom just a few weeks before she transformed into AML. Since her MDS diagnosis in 2/05, her primary oncologist had her consulting with the “big wig” doctor at the major center of excellence in our city about every 8 weeks. All along he said she would transform to AML at some point and he wanted to keep on the ready so she could partake in a clinical study for aml. So for months we went down every other month and every time her labs indicated that she wasn’t there yet. She continued with supportive care ocassionally and hydrea with her local doctor. I remember we went down for another consultation on 10-18-05, and again her labs were fairly steady, so the doctor said not to come back until Feb 06…she appeared to be holdng steady with MDS and feeling quite good.Still, she went weekly to the local doctor for labs as she has done since Feb 05. The next two weeks her labs were fine with her local doctor and then BAM..she took a swift nose dive and transformed into AML by the begining of November.The next time we met with the big wig doctor he came to her bedside as she was inpatient and fighting for her life. And I remember thinking how it had only been a few weeks back, only days really since we were in his office that he said to not to come back for four months. So I think in some cases it can happen that quickly. Fortunately for her, she has been able to recover from the aml crisis and is trying a treatment and is showing some improvement.
Again, sorry for your loss and your frustration. I struggle every day worrying that we are making the right decisions and that the doctors are all on the same page…good luck
Kristy

[kristyk]

Hi Angie
Hang in there. I know how you feel. My mother ( dx MDS 2/05)was stable as they come until she transformed into AML 11-7-05. Her counts were normal(ish) on a monday and she was AML by the following monday. It was rather sudden I think. However I do maintain hope because I read about it here and on the leukemia living with AML forum all of the time. Your Dad has some options and my only advise is to get the info/consultations you need asap and start something asap. At least in my experience the feeling of urgency( on my part as well as that of the doctors) increases SIGNIFICANTLY once AML is determined.
For me, the quandary has been whether or not my Mom should have gone with the induction chemo vs the trial decitibine. Her doctor seemed to think that if the decitibine proves to not be effective he could always “pull out the big guns” as he calls the traditional induction chemo. I have to have some faith that he knows what he is doing. Options do exist though, and I do take some comfort in that and in no way think that options have been exhausted. There is always plan B! As everyone indicates everyone is different in how they respond to treatment.
So good luck and I will be praying for your Dad. As for you..take care of yourself. Sounds Like you are an awesome advocate/treatment partner for/with your Dad. Go Fight Win!!
Kristy

[kristyk]

thanks Sandy..I do hope. As for the quick progression, I think the process has been elvolving quietly all these months, the dr’s have said that all along, however without symptoms ( other that counts being slightly off) it is easy to think “surely they must be wrong”. Still the change in the her counts this week was amazing..all of the docs seemed a little “freaked” out as well…it will be interesting to see results of the bone marrow biopsy taken this eve…my guess is that the blast count will be awful. But hey she is feeling better with blood and is ready to tackle this thing. thanks again for the support. Kristy K

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