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  #26  
Old Fri Feb 11, 2011, 09:12 PM
Greg H Greg H is offline
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Hey Paula!

Thanks for the update. I'm sorry to hear that your Mom's counts haven't stabilized yet, but that platelet uptick is a good sign. I think hanging in there is pretty much the prescription at this point -- though I wouldn't let that GI bleeding thing go on very long without talking with the docs about it.

I can't imagine that your Mom would be interested in most of the exciting procedures GI docs are known for -- nor would they be likely to do them, given her platelet level.

Take care!

Greg
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Greg, 59, dx MDS RCMD Int-1 03/10, 8+ & Dup1(q21q31). NIH Campath 11/2010. Non-responder. Tiny telomeres. TERT mutation. Danazol at NIH 12/11. TX independent 7/12. Pancreatitis 4/15. 15% blasts 4/16. DX RAEB-2. Beginning Vidaza to prep for MUD STC. Check out my blog at www.greghankins.com
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  #27  
Old Tue Feb 15, 2011, 07:15 AM
Paula W. Paula W. is offline
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Greg,

She hasn't had any bleeding since that day. I spoke w/ my brother and my father and we decided to see if it happens again before putting her through any thing else. Just don't want to put more on her at this time. What if it is something serious???? then what??? considering the time line her oncologist gave her, do I want to put her through anymore worry or hell????? Don't know the right answer, just going w/ my gut at this time.

She went to trial dr. yesterday to start her 3rd round. Her hb is at 11.5, which is probably due to the transfusion. Her platelets dropped to 29,000 from 35,000. Dr. suggested a platelet transfusion just to see if it would hold. She will probably do that after this onconova round.

I'm trying to keep positive, but we really don't have any signs that the trial is working yet, maybe to early to tell.

Thanks for your continued support.

Paula
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  #28  
Old Tue Feb 15, 2011, 07:51 AM
Greg H Greg H is offline
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Hey Paula!

Glad to hear the bleeding stopped. Perhaps it won't return. If the blood was bright red, it could be related to either hemorrhoids or small temporary tears in the anal region, both of which are complicated by constipation or straining during a bowel movement. That sort of thing is usually temporary and not too much to worry about if it doesn't persist.

All any of us can do is go with our gut and hope we made the right decision.

You would, of course, want to mention it to her docs -- particularly the clinical trial doc -- as well as letting them know that you don't think it's good to try to deal with it at the moment.

I'm not sure the reports on Estybon that were presented at ASH had any data on how long it took to respond. Does your trial doc have any info to share on that point?

It can be frustrating to wait for therapy to work -- and hard to keep faith that it will.

Good luck to you and your Mom.

Greg
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Greg, 59, dx MDS RCMD Int-1 03/10, 8+ & Dup1(q21q31). NIH Campath 11/2010. Non-responder. Tiny telomeres. TERT mutation. Danazol at NIH 12/11. TX independent 7/12. Pancreatitis 4/15. 15% blasts 4/16. DX RAEB-2. Beginning Vidaza to prep for MUD STC. Check out my blog at www.greghankins.com
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  #29  
Old Mon Feb 21, 2011, 07:00 PM
Paula W. Paula W. is offline
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Hi All,

Well, my mom in in between her 3rd and 4th Onconova treatment. She needed a platelet transfusion today as her platelets dropped to 9,000 from 18,000 on Friday. The platelets have dropped dramatically these past couple of weeks. Her HB is holding since her last transfusion at 10.6. They did drop since Friday from 11.6 to the 10.6. WBC are at 1.3.

She kind of as the defeated look on her face but is trying to look strong for us. Seems that everyday is a new challenge. I don't think that the trial is doing what we hoped, but we will continue to give it a fair chance and to continue to give hope to my mother.

She goes for her 4th treatment next Monday.

Paula
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  #30  
Old Thu Feb 24, 2011, 07:22 AM
Paula W. Paula W. is offline
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The day after her transfusion, I picked her up and we went shopping at the mall, she looked and felt great, yesterday we spent the afternoon together w/ family, and she hosted at her house, then last night we went to our weekly poker night. Again, she felt and looked great. All I have to say is "what a ride". One day I feel like I'm losing her and the next it's like nothing is wrong!! Cherish the good days!!!

More blood work today, it can go either way, maybe a transfusion or maybe a dat in AC, who knows!! LOL

Have a great day everyone!!

Paula
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  #31  
Old Thu Feb 24, 2011, 04:09 PM
mausmish mausmish is offline
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Wonderful news that she's responded so well!
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Karen, age 62, dx MDS RAEB-2 1/8/10: pancytopenia WBC 2.7k/Hgb 7.4/Hct 22.1/Plt 19k; complex cytogenetics -3,del(5)(q14q33),-6,+8,+mar,17% blasts. MUD BMT Johns Hopkins 11/30/10. Dx tongue cancer 8/31/12. ok now. blog mausmarrow.com
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  #32  
Old Mon Mar 14, 2011, 07:39 AM
Paula W. Paula W. is offline
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Big day for my mom today. She is starting her 5th round of Estybon (Onconova) as well as going for a bmb. I'm kind of nervous about the bmb. She started out on the trial with under 8% blast, but since she started the trial she has pretty much been transfusion dependent with platelets and rbc, although it's been 2 weeks since she needed any. Her platelets are stable between 23,000 and 28,000.

They will check her blood today before doing bmb, in case she needs platelets.

Please say a little prayer. I will keep you all posted. I know we are all hoping for a good turn out as this drug may be the answer to many of our prayers.

Paula
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  #33  
Old Mon Mar 14, 2011, 12:30 PM
Birgitta-A Birgitta-A is offline
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Estybon

Hi Paula,
Hope your mother was OK during the BMB and that the result will show good effect after treatment with Estybon!
Kind regards
Birgitta-A
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  #34  
Old Fri Mar 18, 2011, 07:57 AM
Paula W. Paula W. is offline
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Well we were very excited on Wednesday 3/16/11, before she went for her BMB she had blood work and for the first time since October, her platelets jumped 10,000 to 35,000 and her RBC to 8.9. So we figure ok, trial starting to kick in right?????

Yesterday, she goes to have the drug disconnected from her port and starts bleeding from the port, so the dr. wanted to check her blood. Her platelets dropped to 17,000 and her RBC to 7. So today she is getting transfusions on both. What a drop in one day!!!! So I don't know where this is going, but I don't have a good feeling. I will know more next week, when we should get some results from BMB. And the roller coaster ride continues. Trying to optimistic but my mom look sooooo defeated yesterday. But she is such a trooper, I couldn't be prouder.

I will keep you all posted.

Paula
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  #35  
Old Sat Mar 19, 2011, 12:06 AM
cathybee1 cathybee1 is offline
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To Paula

Thanks for the update.

Many of us have been on that roller coaster ride. I hope this was just a temporary setback for your mom and that today went a little better.
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Catherine, wife of Bruce age 75; diagnosed 6/10/11 with macrocytic anemia, neutropenia and mild thrombocytopenia; BMB suggesting emerging MDS. Copper deficient. Currently receiving procrit and neuopogen injections weekly, B12 dermal cream and injections, Transfusions ~ 5 weeks.
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  #36  
Old Sat Mar 19, 2011, 11:29 AM
Paula W. Paula W. is offline
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Thank you Cathy,

I met her at the hospital yesterday when she was getting the transfusion. Guess what?? Before they did the transfusion they took her blood and her platelets jumped back up to 27,000, so she didn't need platelets, just blood. How it drops from 35,000 to 17,000 then back up to 27,000 in a matter of 3 days, I will never figure it out.

I know all of you have been on this roller coaster ride, it's a wonder how so many of us keep it together.

May a cure be in the near future!!!

Regards,
Paula
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  #37  
Old Sat Mar 19, 2011, 03:03 PM
Birgitta-A Birgitta-A is offline
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Platelets

Hi Paula,
Perhaps you have already seen these "warnings" from patients with low platelets. We are all different and many of us tolerate the drugs and food that can give other persons low platelets or increase bleeding risk: http://www.pdsa.org/about-itp/warnings.html

You know the platelet count can change very fast and we don't know the reason but we should always be very careful with all kinds of drugs especially painkillers.
Kind regards
Birgitta-A
72 yo, dx MDS Interm-1 2006. Platelets slowly decreasing from 65 to 22 May 2010. After Thalidomide since June 2010 platelets 109.
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  #38  
Old Mon Mar 21, 2011, 07:24 AM
Paula W. Paula W. is offline
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Thank you Birgitta,

I went to the site and printed out the foods that may do more harm than good. There are a lot of foods on there!! I gave my mom the list and I threw out all of her "sweet n low".

Again thank you for your help (and your knowledge).

All the best!

Paula
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  #39  
Old Mon Mar 28, 2011, 07:01 PM
Paula W. Paula W. is offline
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Hi All,

We got my moms bone marrow results today and the results were very good. Her blasts are at a 2% . She is still considered low risk MDS and at this point, not at risk for leukemia. Her blood levels have not improved as of yet. The Dr. wants her to remain in the Onconova "estybon" at this time. If her numbers don't improve, she would like to try another drug. I don't know what drug it will be.

She has been blood transfusion & platelet transfusion dependent since on the Onconova. Her doctor insists that it's not from the drug, but from the MDS itself. I will keep you posted...........

Paula
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  #40  
Old Tue Mar 29, 2011, 04:22 AM
Birgitta-A Birgitta-A is offline
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Estybon

Hi Paula,
Very good with low blast cells! Do you think it will be possible to combine Estybon with some other drug or is that impossible because Estybon can only be given in trials with a special protocol?
Kind regards
Birgitta-A
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  #41  
Old Tue Mar 29, 2011, 07:21 AM
Paula W. Paula W. is offline
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Birgitta,

I'm thinking they wont mix the drugs. They don't even like changing the dosage on the Estybon. I will find out in a couple of weeks, what their plan is, because if her blood levels don't improve I don't believe they will keep her on the trial. But I am grateful that the blasts are low too!!

Paula
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