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Russ P.
MemberKirby,
It is great that some things work, PTL.
May good things keep up for you.
RussMemberMaueen – been holding my own with the clinical trial. Seems my WBCs and neutrophils are doing good a couple of weeks after treament. My PLTs are about 60 but my HGB drops to where I need a tx once a month. Look at JaniceR’s posts on Dacogen + Valproic acid. I’m thinking this might be an approach for me since both PXD-101 and Valproic acid are HDAC inhibitors and Vidaza and Dacogen are similar.
God Bless,
RussMemberJanice,
Thanks for sharing the new treatment – I also was on Dacogen until my MDS went into AML (30% blasts).
Could you supply some detail on this? Is it a clinical trial and if not does Medicare cover cost of drugs? You can e-mail me at: ripoole@yahoo.com
Thanks,
RussMemberJanice,
Noted the treatment of Dacogen + Valproic acid.
Could you supply some detail on this? Is it a clinical trial and if not does Medicare cover cost of drugs? You can e-mail me at: ripoole@yahoo.com
Thanks,
RussMemberDear Alex,
I’m not good at words but I pray that memories of happier days with your mom and the Lords tender mercy will sustain you and the family.
With my AML my time is short, but I would hope my family knows when I go, that I’m in a better place – guaranteed by my faith in Jesus Christ.
RussMemberMaureen, Best wishes for your dad. Hope the Dacogen works. It will lower neutrophils so he may need some prophylatic antibiotics and antivirals.
RussMemberPeriperal blasts should be <1% or none. They could be a spill over from bone marrow excess blasts or even come from the spleen or liver.
You really need to have a BMB to check level
of blasts in the marrow then decide on the treatment. My Opinion.MemberMaureen, the disease and individual response to chemo is so varied, I would recommend a consultation with Dr. Raza at UMass in Worcester.
See: http://www.umassmed.edu/hema_oncology/statement.aspx
She could devise a specialized treatment plan for your dad.
RussMemberHi Terri, I recall a post somewhere that some chemos can cause itching watery eyes. In those cases they were helped with an antihistamine.
RussMemberHi Ira,
When did you start your trial? I started my 1st rnd on 1/29/07.
I get my Vidaza by injection followed by an IV of PDX-101 for 5 days then off any treatment for 3 wks. Mine is a phase I trial, what is yours?
Keep on improving – it is extremely encouraging.
RussMemberPatti,
Don’t give up – your comments and knowledge is very helpful and can be an encouragement. Consider your continued follow up as a ministry.
We all need to remember that each case of MDS is different and each doctor has different opinions. I only wish the disease and treatments were standard enough that there was only one right answer.
The best to you,
RussMemberIra,
Hope your improvement keeps up. It is great to hear that something works. Is SAHA aproved by the FDA? I have AML (from MDS) and am on a clinical trial with Vidaza and PDX-101. Both PDX-101 and SAHA are histone deacetylase inhibitors so your treatment and mine are similar. I have been helped some in that I’m still alive and don’t feel too bad – but have not made the gains that you have. My cancer was much more advanced than yours.
RussMemberThis is an update on my CT scans.
My prior post: “I was dx’d with AML (developed from MDS). In a BMB on 1/08/07, I had 35% blasts in the marrow and 46% in my periperal blood. A month ago another BMB was run (before my 3rd rd of PDX-101+Vidaza). This time my marrow blasts had dropped to 15% but my periperal blasts were 82%.”Dr. Raza felt the high periperal blasts were from outside the bone marrow and suggested a CT scan to check the spleen, lymphnodes and liver. The CT scan was negative for any neoplasia but Dr. Raza said
the spleen could still be the cause.
Russ,MemberOn my CBCs I was given a quicky report that did not include blasts. It was only later that a differential report showed the blasts among other things.
MemberBluej, You will find this forum very helpful. Try using the search to find posts to answer your questions. For example do a search for “Vidaza”. Regarding the bruising it is somewhat normal but make sure the syringes are shaken well before injection and is injected slowly. Perhaps having the Vidaza divided in 3 syringes would be better than 2. Don’t put ice on as it could cause the knots. If painful apply a cortisone cream. My main problem with Vidaza was constipation for a week. Best wishes – remember each patient is different and reacts differently.
Russ -
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