update on mom, things not looking so good

[kristyk]

Russ, you asked in another thread how things were going, so thought I start a fresh string here..

Bone Marrow Biopsy results not good. 65% blasts. 80% plus in blood. Disease certainly back. White count went from 17 to 77 in 3 weeks time. As you recall on 9/11 she was disqualified from decitibine study because the disease had progressed. Numbers would suggest that the drug stopped working. I on the other hand have my own theory. I think there is slight chance that disease came back because she had to take 2 month break and missed 2 cycles, that combined with daily neupogen shots during that time, in effort to get white up. I’ve read some theories that the growth factor could also stimulate the disease. Nonetheless, studies have parameters and she can’t get back in.
Plan B was to try another trial called SAHA. Unfortunately her liver # way to high combined with the high white…doesn’t qualify for that now. SO, 2 weeks ago they put her on hydrea..she took that way back when for awhile before transforming to AML.. in hopes it would get the white down and some of the blasts. Still thinking SAHA, but doubt it. Doubled her dose this week as whites kept climbing. Perhaps its working, wed the white was 77 today it is 67.
We go back for another consult monday. Gonna have to do something. Dr seems hesitent to go for the big chemo..but not sure what other options are.
I am going to throw out my theory of the decitibine..they could offer it as compassionate option but the cost will be terrifying. Insurance won’t pay, not FDA approved for AML. Mom could swing it for awhile if dr feels it is worth a shot. I’d like to see her try a few more cyles, have feeling it might still work. But perhaps I am too focused on how well she did for the past year she was on it. Don’t know. A bit confused.

Yesterday she felt sick for first time in long long time. Indigestion, has the runs, belly aches. Low grade fever.I’m scared..she has not been too sick like this yet. We think ( hope) it is just the increase in hydrea side effect.

One perplexing thing Dr. noted on 9/18 visit was that her platelets were holding. No transfusion for going on 6 weeks. Said it didn’t make sense given the other numbers…something odd going on.called her the unsinkable molly brown. Again made me think perhaps the decitibine was still kicking around and she is somehow responding.

Gonna have to do something soon..keep you posted.

Kristy

[Russ]

Kristy, Thanks for the update – wish the news could be better. Your mom and you will especially remembered in my prayers. God Bless.

[patti]

Kristy,

I’m sorry this is such a struggle for your mom (and you) right now. I can see what you mean about a few more rounds of the decitabine (taking into account the platelet thing). Does her doctor think he can get it on a compassionate basis for her?

I also wanted to thank you for your thoughts on the neupogen. As I posted to Russ in another post, we believe that using the Aranesp and procrit caused disease progression in mom (because it didn’t work for her but she kept taking it for 9 months). I have also wondered about the neupogen for mom this past few months. She’s been flirting with increasing white cells and I’ve wondered if we should get her off of it until we know what’s going on. I think the theory about the neupogen is similar to mine about the EPO’s. I’ve also read those studies. I will visit with mom’s doc about it. Thanks for mentioning that.

Can I ask a question about your mom’s AML? Did she have bone pain when she got it? I know the neupogen shots can cause bone pain if they’re working, but I wondered about the AML. TIA.

Hang in there. One day at a time. Your mom has come through a lot. She reminds me of my MIL. Mom’s doc and naturopath call her the energizer bunny (in a good way .) Just when you think the batteries are running out – they recharge and do just fine for another long while. Hoping this is just a recharge for her.

All the best,

patti

[lynette]

Hi Kristy,
Oh do I know what you are going through. I was in the same exact spot in July. Mom tried a week of Revlimid($3500, was going to be one month; counts went too low). Then, she tried a week of Decitibine. At that point her AML was back–no doubt. Her counts were very similar to your mom. Her Decitibine was covered by Medicare because it was given at the Hem/Onc office. I don’t know how Medicare paid–perhaps because she started w/ MDS that transformed to AML.
Mom eventually needed standard induction. It was the ONLY option. It was not easy, and she had every side effect and problem one could imagine. My Mom is 75, otherwise no other health issues.(I feel strange stating that—AML is more than enough!)Her docs held off w/ the heavy Chemo until there were no other options, and told her that the treatment could cause her demise. However, she wanted to try it.
I pray for you and your Mom. I know how you feel. It is a very tough place to be. In the end, it will be her decision.
Prayers and understanding,
Lynette

[Terri]

Kristy, When VIdaza was not approved and Trials just finishing Bob got it when it was 5 AZA on a compassionate base the doctor had to contact the National Institute and We DID pay a penny and neither did my insurance get paid. You might want to try and contact the National Institute. Or try the mfg of the drug.

[KWJ]

My dad got Sweets after his shots of neupogen. I reallythink it progressed his disease and brought on the sweets. his blasts were at 5% before and 13% after. Hid doc must think so too because he won’t give him anymore. Even as his whites are at 11.

[TEMBO]

Thank you Kristy for your posting. We are standing with your Mom! Although we know how disappointing and painful side effects can be, we are excited about her platelets. We pray this is a sign of new beginnings for her! Please continue to keep us up to date. God Bless.

Hey KWJ, Hope your Dad is doing well on dacogen. Would be interested in his experience. My husband is trying to decided on this treatment. However, he has low white and red blood cell counts not high. ie MDS/MPD. Any thoughts would be appreciated.

Does anyone know what is Sweets? Do they know what causes Sweets. I have read other folks getting Sweets after aranesp, neupogen, and other treatments. Does anyone know how this all fits together? I did read that Sweets can be involved with auto immune? This all seems so complicated from this prosective. I know there must be a simple answer if all was know.

Many Thanks,
Karen

[Russ]

Karen, check these posts where sweets is mentioned:
Sweets Syndrome–I crashed April 23, 2005
has anyone ever heard of immune system attacking transfusions September 19, 2006
IGIV has anyone ever heard of this September 14, 2006
Cellulitis September 05, 2006
Clofarabine August 22, 2006
Bumps under his skin and open sore August 18, 2006
Dacogen/Decitibine July 11, 2006
My visit with Dr. Kou. June 26, 2006 Prednisone treatment for RARS y-, 5- June 17, 2006
abbreviation protocol June 15, 2006
MDS and Thirtysomethings April 20, 2006
Where are Tah/donner and John ?? February 06, 2006
Nutritional Information November 04, 2005
Pineapple and Raw Black Sesame Seeds October 22, 2005
CMML Question October 09, 2005
Aspartame/Leukemia August 09, 2005
Hope you find some answers in the above.

[KWJ]

Here is a description of Sweets. Is common with MDS.

Sweet’s syndrome, or acute febrile neutrophilic dermatosis, is a condition characterized by the sudden onset of fever, leukocytosis, and tender, erythematous, well-demarcated papules and plaques which show dense neutrophilic infiltrates on histologic exam ination. Although it may occur in the absence of other known disease, Sweet’s syndrome is often associated with hematologic disease (including leukemia), and immunologic disease (rheumatoid arthritis, inflammatory bowel disease). Treatment with systemic corticosteroids is usually successful.

My dad is done with Dacogen, it did not help him at all. Just knocked his platelets out. He was ok before with those, now he is transfusion dependent on those as well as reds every week instead of every 2 weeks. He is headed to the Hutch tomorrow for his 1st interview about a SCT. Hoping for good news as my Granny just passed away lst week from lung cancer. They were diagnosed the same day, 2.2.06. Hoping for a btter result for my dad.

[kristyk]

Thanks to all for well wishes, as usual you all are extremely supportive. Thank you.

Here goes. Today we went for consult. No BMB done in 3 weeks, but blasts in blood 95% today. White back up to 77 despite 1000mg increase in hydrea 1 week ago. Platelets down to 30. Still 6 weeks going on 7 since last transfusion, however they are dropping. Red 8.5, last transfusion week ago Wed. They are dropping a bit faster. Perhaps it is the hydrea. Perhaps is the disease. Who really knows.
She is starting the new study. SAHA or suberoylanilide hydroxamic acid. Oral chemo. Starts Wed. She will be randomly assigned which arm of study dosing the day she starts. Either group A: one pill a day for 3 weeks or Group B: 3 pills a day for 14 days followed by 7 days off. A cycle in this study is considered 3 weeks.
44 people nationally with AML will be part of study, 10 of whom will be patients at Wash U ( mom’s treatment center ). They have had several try already but no one could tolerate the toxicity for more than 3 cycles. 2 of those people went onto induction and are doing fair. Both of those people took decitibine for 24 cycles before it stopped working for them. Mom will be first female at Wash U to try. Currently 20 people nationwide enrolled at this moment.
No one knows a whole bunch at this point..goal is to get some remission time.Currently in Trials for various types of cancer. Little if no research yet for AML.
Mom is up for trying something other than induction just yet. But seems as though that will be course of action if SAHA does not help. I suppose we will know soon. Scared. Obviously high toxicity. Only thing that sets mom apart from the others that have tried it is that they all started with 0 wbc..0 neutrophils. Perhaps her high wbc will be an advantage??? She will also be taking 3000mg hydrea for the next few weeks in another attempt to get white down..then weened off while on the study.

As for my theroy about the neupogen stimulating the disease..The NP today absolutely agreed that there are theories out there to support that…My mom took it daily for like 7 0r 8 weeks..in June and July. It did nothing to boost her wbc during that time.

So..here we go again in unchartered waters. We are exhausted. Hope and prayers this SAHA will be of some help. Whatever it is. As a note a new med was thrown out as another future possibility. Called PDX ??????? Currently in trial for MDS. Have no clue what is is!!

I’ve rambled on.

I’ll keep you posted.

Kristy

[Caroline]

Kristy,

Best wishes to you and your Mom as she goes through this. I will be praying for you.

KWJ,

Please accept my condolences on the death of your Granny. You have alot to deal with right now.

I hope that things go well for you Dad at the Hutch.

Blessings,
Caroline

[lynette]

Kristy,
Prayers for you and your Mom. hang in there.
Lynette

[Russ]

Kristy,
Continued prayers for you and your Mom.

[Engel]

Kristy,
Wishing you and your Mom all the best, my prayers are always for the wonderful people on this forum and wishing them good health again. My husband had such hope and would have tried anything that was out there, but the Lord called him and he followed and left me here. The pain is just unbearable, he was sick 9 months dx. in Jan. 06, I always I could take this. No way. Love you all, Gloria

[Author]

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