MDS to AML

[Suzanne]

It looks as though my mothers MDS has progressed to AML. She is going in to the doctor tomorrow for another bone marrow biopsy, but her WBC count is at 15.7 and her peripheral blasts are at 19%.

Is there any hope at all once it progresses to AML or is this it? I am sick to death over this. What a Christmas present.

[bebop]

why are they putting her thru another bmb? seems like the numbers already show it. poor thing! I will keep her in my prayers hon. I don't mean to sound mean. sometimes I just don't understand the medical personel.

[Greg H]

Suzanne,

I'm no AML expert, but I hate to see you hanging out there, worrying about your Mom, so I'm jumping in here to share the tiny bit of info I do have.

They are probably doing another BMB on your Mom just to make sure they know what kind of AML she has. That will impact the treatment options. And there are treatment options, mostly induction chemotherapy, generally inpatient, for a number of weeks, followed by more drugs or radiation and more weeks in the hospital. But patients your Mom's age can achieve remission.

You can download a PDF of the Leukemia and Lymphoma Society's booklet on AML here: http://www.leukemia-lymphoma.org/att...1279291672.pdf

Reading that would be a good place to start, so that you can figure out what the docs are telling you about your Mom's diagnosis and treatment options. If you've already read that, I apologize.

I'm sorry about your Mom; she's fortunate to have a daughter so willing to go to bat for her, and enduring the treatment for AML is going to require a lot of strength and support. Hang in there and keep asking questions. There are plenty of folks around here who know way more than I do about AML.

Take care,

Greg

[Suzanne]

Thank you so much for your replies. As usual Greg you are a vast oasis of knowledge! My mother gets more bone marrow biopsies than anyone I have ever seen. She had at least 3 this year, this will be her 4th.
When you talk about achieving remission are we talking remission from AML and still having MDS? or do you get remission from the whole shebang? Chemo for AML is normally inpatient? I know absolutely nothing about treating AML, I guess I have to start learning...I always hoped we wouldn't cross this bridge. Sad thing is her BMB from the 10/28/10 showed 8% blasts in the bone marrow and everything looked stabile, now this weeks later.

[launch]

Dear Suzanne,

How old is your mother? My husband, Ron, is 66 yrs old and was dx with MDS Feb'09. He had the type MDS (RARS, less than 4% blasts) that should not progress into AML. Well, he started Vidaza treatment and had wonderful response to it for 13 months, then, the drug no longer worked. Like your Mom, his WBC counts started jumping, etc.... 6.5, then 9.5, then, on up, etc.... Well, he had transitioned into AML.

The good thing is, they do have treatment for AML. And, while, it was hard on my husband due to him being so sick already, he is now doing very very well. He had transitioned into AML July'10 and he is hear today to talk about it. Matter of fact, we went to Chicago for Thanksgiving to visit his son. So, don't be discouraged, its' a tough ride, but, there are incrediable treatments out there!

I pray that your Mom is able to go through the Induction Chemo Treatment that my husband went through. It was hard on him, but, as I said previously, he is doing great! I credit God first in my husbands current condition... I pray your Mom will have the same success!

Hugs, Cindy

[Suzanne]

Thank you Cindy!!!!

Things seem so dark right now that I can't even imagine something positive coming out of this. She is 69 years old and has such a will to live, I think that is what is killing me the most. I have NEVER in my life seen someone tolerate what my mother does, without so much as a complaint. She is the perfect patient and all she wants is to get well and live her life. When this curve ball came our way, I certainly felt the fight was over. She is bleeding vaginal I am assuming from this, they need to get that under control soon and hopefully on to chemo.

How was the induction chemo? How long was Ron in the hospital for? My mother is terrified of the hospital and that has been the one thing she is afraid of and never wanted to go (I think she is afraid she will go in and never get out). Did Ron do consolidation therapy too?

Thank you so much for the encouragement!

Hugs,
Suzanne

[cheri]

Hi Suzanne~
There is always hope! Don't give up the fight! I was diagnosed with AML in Oct 2009 and in July had a BMB which revealed no AML but now I have MDS....(which they say is from AML chemo) This can be a vicious cycle!

My next BMB in Jan will tell if AML has come back...all along they said it usually takes about a year. (I achieved remission thru induction chemo but had other complications and did not pursue further chemo or BMT.)

Standard treatment is--First, they will do 7 day "induction" chemo and either consecutive months of more chemo, ("consolidation" therapy) and/ or a BMT. There is a lot of good information on the web, if you google AML and explore...

I was initially frustrated with lack of reality in the discussion about my time left/quality of life. I think, back in Oct 09, they said without treatment I had 3 months. No brainer--within 1 month I was at a major Phila hospital getting chemo. But I had a rough time, and after 2-1/2 months there, I said no more heavy treatment--it took over 6 months to start to feel normal again.
Initially, my counts began to rise, and I changed my diet and it was all good until June, when my counts started to fall again.


Ultimately, there is no cure.. I have since learned of many people I KNEW getting AML and passing quickly. But we are all unique, and against all odds, I am still here another year later, feeling good and on Vidaza. I am still transfusion dependent. They say Vidaza shows promise with some AML patients, so I am curious to find out what my new BMB will show. But I put it off until January to be able to celebrate this holiday season as stress free as possible.. This time last year I was in the midst of a 3 week coma, and the medical community never thought I would see this Christmas!
The fact that your Mother is a fighter and has a strong will to live is paramount. Rather than looking to "get well and live life", I have learned to live life while trying to get well....
So hang in there and look at the fact that you are able to share this Christmas with your Mom. Remember, it is the season of miracles!
Take the holidays off from your worries and be fresh to resume the fight after the new year!
Best, Cheri

[Paula W.]

WoW, I am amazed that I am not alone!! My mom has MDS. She is 77 years old. She was on Vidaza and was doing great, but that all changed. Her platelets are down in the 20,000's and her wbc are down to 1.3. Her doctor said that there isn't anything else he can do for her, so we are looking for a trial. I spoke with him privately and he told me that she has about 6 months to live. I am devastated! She looks awesome and feels great. My brain is having a hard time with this information. She doesn't have AML, although this is where I believe it's going.

I am saddened to see so many people suffer from this disease. May God bless all of you, patients and caregivers!

Paula

[bebop]

Paula they told my dad back at the beginning of April he had about 6 months. he is not doing well now but he has made it longer than they thought. His dr now is sorry she told him a time frame. Hang in there hon and spend as much time as you can with her.

[Suzanne]

We got the news today that my mother transitioned to AML. She has 45% blast in her bone marrow. They will put her in the hospital on Monday and she will start Clofarabine since they don't think her heart can take Induction Chemo. He also told us she is no longer making her own platelet or RBC. I am very concerned because she is bleeding heavily vaginally. The doctor said there was a 30% chance of getting her into remission and IF she was lucky enough to get remission it wouldnt be lasting. She will need to find a marrow donor and have a bone marrow transplant. The odds of the transplant taking? 30% I feel like I am in an uphill battle here, the odds are against us. She went from being so positive to crying and devastated. Not to mention she is terrified of hospitals, she is afraid she will go in and never get out. She is worried to see her grandkids tomorrow and Christmas because she is afraid it will be the last time she sees them. I hate this disease.

Please pray for my mother, Theresa. We need Christmas miracle in New York!

[akita]

Suzanne,

so sorry for the actually sad situation. I would like to help you if i could in trying to manage the actual situation and to improve the mood of your mother, which seems to be in a desperate status now.

In my past i had a lot of experiences with emergency situations, first time with my own psychiatric disease, then also with the problems of the members of my self-help network, und now as a inpatient in hematological wards for 15 months.

Strategy matters (that would be my approach, please stop to read this if it is not convenient or even hurting for you):

Your own perspective in relation to your mothers disease:

In such a situation it seems difficult to reflect about the future - e.g. a transplantation. and this all might seem to be an "uphill battle" without hope.
A step-by-step strategy could perhaps help?

For today: Is there a possibility to contact the hospital or your hematologist (at least by telephone) today and ask a doctor for more informatione? There must always be a doctor present in the hospital, although there are less patients and less doctors during the holidays. Supposedly these questions have been already checked before.

These questions could be:

- Could resp. should anything be done against the vaginal bleeding to emprove this symptome today?

As your mother does actually not produce platelets such a bleeding could be perhaps threatening (but i have no personal experience with low platelets and bleeding). I had much bleeding in a time-period where i had myomas in my uterus 1997/1998. The gynocologist prescribed Cyclocaprone, which reduced the bleedings considerable. This was no solution of the underlying problem, but perhaps it would considered as potentially useful by the hospital doctor, so you could get the medicament even earlier as Monday? I suppose this bleeding is not estimated as dangerous by the doctors, because otherwise they would have taken action..(?) But a telephone call to the hospital could make you sure that there is no actual danger with that bleeding and this could help to make christmas not so much desperate..

- Is there an actual need for your mother to get transfusions? If yes, every day counts, and also your initiative counts..

For the hospital beginning from Monday:

- You wrote that it is planned to make a try with Clofarabine. This seems really to be a medicament of hope actually in the hematological research. Look, there is a report from the this year Conference of the American Society of Hematology! There is a study running with oral Clofarabine for patients in the age of your mother, which have not responded in den past to demethylating agents like Vidaza! From this study they report a response rate of 31 %. This is not so bad for patients in the situation of non-respondance. Doctors look much to find any helping medicaments for this situation. There are patients involved in the study with MDS or AML after MDS/sAML, your mothers diagnosis.

http://ash.confex.com/ash/2010/webpr...aper31855.html

- For Austrian Hospitals - and I am sure also for such in the US - i am sure, that your mother will get all the supportive care that she needs,which includes

-- management of the vaginal bleeding by sending her in the hospital (perhaps in her patient - bed) to a gynäecological ward to investigate the source of bleeding and give her supportive medicaments

--giving her the necessary red cell and platelet transfusions until a response to clofarabine is obtained. This could happen early in the treatment, as in the study report described. If this medicament would not work, - i guess they will have another one to attempt with..

- Clofarabine seems to be a mild medicament, it has been used primarily für children and young people with relapsed or refractory CLL, but now it has been discovered as a treating choice also for some refractory elderly patients with MDs/AML. In hospital your mother will get perhaps the intravenous infusions.The abovementioned study uses oral Clofarabine, with could be administered by your mother also at home, if it works. But there are also a lot of possible side effects your mother will have to cope with.

There is a full information concerning all this /the medicament Clofarabine/Clolar.

http://www.rxlist.com/clolar-drug.htm#moreinfo

Perhaps you want to discuss one of the points/information with a doctor.

Please don`t be shocked, this is not necessary, - the most side effects will never come!

In case of side effects experienced by your mother (and i don`t mean hematological ones) it is usually helpfull to communicate them as fast as possible to the medicians and nurses, and as the visiting daughter of your hospitalized mother you have a powerful word in this situation, you could help your mother express her side effects. In my experience there exist in almost all cases extra medicaments to moderate this side effect, -but it is often necessary to claim that. The personal in a ward is often in hurry and also occupied by other patients so that they could probably forget to look for your mothers complaints..if they are not reminded to do that.

For the Future: There is a study with Clofarabine where the remissions lasted for median 12 months. This is not long compared with a long life,but it gives time for the different treatment choices, such as SZT. I know the perspectives are in percentual estimation not so good for your mother, but there is reason for moderate hope.

Your mothers perspective/situation.

Seemingly your mother must have much experiences with hematological hospitals, treatments, side effects.. and such persons usually have developped their own helping/self-helping strategies. Maybe it consoldates your mother, when you ask her for her specific methods which helped her in the past to cope with the desasters, the hospitalisation, the therapy-failings.. Maybe she will express some ideas e.g. what to take with her to the hospital on Monday.

Christmas in the family could be a consolidating event. Perhaps you want to make many many photographs of your mother with her beloved ones? Printing them out, wiriting love messages on them.. Celebrating a spot of healing new life (Christmas) in a difficult time. Taking them to the hospital could give your mother pehaps more hope and power, and she has also media to have conversation with the nurses in showing them the photos.

so, hope i could help a little. Nice regards to your mother!

Happy Christmas!

Kind regards,

Margarete

[akita]

>When you talk about achieving remission are we talking remission from AML and still having MDS? or do you get remission from the whole shebang?

As i learned in case of remission your mother is "backstaged" from AML to MDS RAEBII (so it was in my case).

Regards
Margarete

[launch]

I just talked to Suzanne about her Mom's condition. Her Mom (Theresa) is having a very difficult time in treatment. First, the treatment was slightly delayed due to the Blizzard conditions, but, finally she entered into treatment and has developed A-Fib and Racing heart conditions. She has very labored breathing and they've had to put her on a Bi-Pap machine to help with breathing, which is drying her out a lot. (I recommended they add a humidfier if able, but, they're checking on that now).

Meanwhile, the doctors want to put her Mom on a ventilator. (If I understood it correctly, she has carbon gases building up in her blood and this would allow them to clear out the gases). Her Mom has refused, probably afraid she will not come off of it. They've also had to put her on a urine cath to help her from having to get up and down from the bed.

I told Suzanne I would post her Mom's status and would ask the Prayer Warriors to go to work... praying for her Mom (Theresa) and the rest of the Family.

I know that Suzanne needs an Angel sent her way to for comfort.... as all families/caregivers, she is going through things that she never thought she'd have to ensure in her lifetime.... Please pray for her to have the wisdom to help make the right choices for her Mom and that her Mom is willing to accept the decisions that are being made.

God Bless Suzanne and Her Family...
Sincerely,
Cindy

[akita]

@launch,

> developed A-Fib and Racing heart conditions. She has very labored breathing and they've had to put her on a Bi-Pap machine to help with breathing, which is drying her out a lot. (I recommended they add a humidfier if able, but, they're checking on that now).

i am sleep apnoe patient and used to sleep with a cpap-machine in the night. as i went to hospital for transplantation they advised me not to take my own machine to the ward because they had their own advice in case i would need some breathing help.

What they showed to me was not helpful. Although the device was said to have the same adjustments as mine regarding pressure, i was not able to cope with it. I think it was a sort of standard machine used for many patients and constellations, but not adapted to the very special needs of such a patient. I guess these can checked only in a sleep laboratory with special tests leading to a profound knowledge of the breathing problems of this patient.

In my case there would have been a sleep laboratory in the same hospital, but the transplantation unit had no cooperation-status with this laboratory. Additionally these laboratories seem to be full occupied for months by ambulant patients and actually not able to adjust to the very special conditions of a hematologic patients..

I agree with you that a humidifier would be very recommended in this situation Another problem regarding these advices in a hospital setting is that the sterilisation procedure is complicated and the flexible tubes must be renewed often. So finally we agreed that i would take my own cpap-machine to the hospital and would clean it by my own. This did not work, because they brought the wrong equipment to the hospital and i also could not use that. Ok, i could have ordered a new mask if necessary.

The normal "private" home devices in CPAP and BI-PAP are different regarding the possibility of adding oxygene, but it is possible to order such extra devices from the company which provides the cpap-machine. So i did. It was a complicated procedure involving the insurance which hat to give a permission for that.. In the hospital they have their special oxygene devices coming out of the walls, but not fitting together with my private device. So it is necessary to check the oxigene device for the privately provided machine also privately.

Another problem could be the wrong choice of breathing mask. Most people use a mask only covering the nose whereas the mouth is closed by a sort of belt. I first had this sort of mask, causing problems to me. My pulmologist had not checked that i have special abnormalities "Muschelhypertrophie" in my upper breathing system, so that i would have needed a full-face mask (which i have now). Many people have this Hypertrophy that causes normally no problems except in these special states of emergency when they are given a breathing machine. Perhaps it could help Suzannes mother checking if she has actually only a nose -mask and would need a fullface one for optimal breathing.. Doctors seemingly dont know that this sort of problem exists (This was not only my pulmologist). i have learned about these specialities only in a CPAP - Patients forum and that helped me to go to the right hospital department to get a proper additional diagnosis. In short time it could be difficult to check all this circumstances.

Its better for a patient in risk of breathing problems to check his/devices before entering hospital according to the advice of the pulmologist...and also to check the hygienical provisions that have to be made in the case you would really need the device in the hospital setting. For me it was finally not really necessary, i could sleep anyway..

Perhaps it would help in this situation to try to contact the sleep laboratory in this hospital, if existent, for some consultation/help. I did not have the impression that the hematologists in my situation were really competent using the device they had at the station.

Suzanne`s mother seems to be in very difficult situation. Hopefully, her state will become better again. Including her and the family in some prayer could really help!!

Regards,

Margarete
So finally

[lindy]

My prayers for Suzanne's mom & family. I know how it's like during this difficult time. God Bless.

[launch]

Suzanne said her Mom's heart is stabilized and breathing under control now, but she is no longer producing urine "out put" .... she fears kidney function problem. Please just keep praying for her Mom (Theresa), she needs those prayers. Thanks, Cindy

[bebop]

Cindy thank you so much for the updates. Please give her my love and prayers. I will pray for her now and for as long as it takes.

[Paula W.]

My prayers are with Suzanne and her Mom. Very sad to see what is happening in such a short time.

May God bless all who come across this horrific disease.

Paula

[Suzanne]

Please continue to pray for my mother. She is now on dialysis since her kidneys shut down, they are hoping they might come back. My dad made a very hard decision yesterday to vent my mother since she is having a horrible time breathing. I don't know if this was the right choice or not, all I know is my heart is broken. I PROMISED her that if anything went wrong I would take her home to die because her biggest fear was dying in the hospital. That doesn't look like it is going to happen. This wasn't supposed to happen like this, I accepted the fact that she didn't have a great chance with remission, but I figured she would make it out of the hospital.

[Susan L]

I am praying for your mother.

[cathybee1]

I'm so sorry to hear about your mom. We're sending many prayers her way.

[Suzanne]

It is with deep sadness that I report that my mother lost her long hard battle with MDS last night. Her family was with her. I will mourn her for the rest of my life. This was never an outcome we expected, the doctors never mentioned it. I knew the odds of remission were slim, but I expected to at least take her home. Please pray for my family, we are going to need them. My mother was the heart of it.

[launch]

Dear Suzanne,

My heart breaks for you. I am so sad to hear of your loss. Please know that I keep lifting you in prayer. I hope that someday the pain and sadness will be replaced by loving memories.... vs painful ones.

Love, Cindy

[cathybee1]

This is such sad news.

[bebop]

Suzanne I am so very sorry for your loss. I can only imagine the pain you are going thru right now. Just know she is no longer suffering and is pain and disease free now. I know words are cheap but I mean them from the bottom of my heart.