Headline » Opinion
[ by | May 14, 2014 3:39 pm | 40 Comments ]
My MDS: It’s Fatigue Again …

Fatigue in my opinion is always an excellent subject matter for a column, be­cause so many of us MDS patients are experts in the various aspects of fatigue and its annoying and bothersome symptoms, which are often as­so­ci­ated with a low hemoglobin level.

The Mayo Clinic defines fatigue as follows:

“Chronic fatigue … is … profound. It’s a nearly constant state of weariness that develops over time and diminishes your energy and mental capacity. Fatigue at this level impacts your emotional and psychological well-being, too.”

Yes, that’s it. I absolutely agree with this definition.

All well-informed MDS patients, all the medical specialists, and all the literature give you mainly three prac­ti­cal pieces of advice for daily living when suffering from fatigue.

The first is to learn to be more in tune with your body.

The second is to be active and positive.…

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[ by | May 8, 2014 6:14 pm | Comments Off ]
P53 Protein Levels May Be A Prognostic Factor For Lower-Risk MDS Patients With A Deletion In Chromosome 5

Results of a recent study indicate that the tumor protein p53 may be a prognostic tool for lower-risk myelo­dys­plastic syn­dromes patients with a deletion in chro­mo­some 5.

The tumor protein p53, which is encoded by the TP53 gene, regulates the pro­cess of cell division and functions as a tumor suppressor.

The results of the recent study are based on data from a clinical trial that tested Revlimid (lenalidomide) in lower-risk mye­lo­dys­plastic syn­dromes (MDS) pa­tients with a deletion in chromosome 5.  All but three of the 85 patients included in the …

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[ by | Apr 28, 2014 3:44 pm | 8 Comments ]
Our Journey With MDS: Watch And Wait Is Not So Bad

As Michael’s caregiver, I have become the person who watches and manages everything from doctor’s appointments to diet, medication and test results. I also spend a lot of time these days worrying about all sorts of things. I find myself watching him trying to gauge if his energy levels are up or down. When I ask, he invariably says he is feeling okay; a little tired, but okay.

Sometimes I find myself looking at his skin color to try and determine if he is paler than he was the day …

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[ by | Apr 15, 2014 1:22 pm | Comments Off ]

A Phase 1/2 clinical trial assessing the investigational drug INCB47986 in mye­lo­dys­plastic syndromes (MDS) is currently recruiting participants in the United States.

The trial is intended to establish the proper dose for the drug and whether or not it has any impact on the red blood cell counts of MDS patients.  Three different dose levels will be tested during the first phase of the trial to determine which, if any, dose levels warrant further investigation based on the observed rates of improvements in red blood cell counts and the tolerability of the drug.

INCB47986, which is being developed by the pharmaceutical company Incyte, is an oral medication that belongs to a class of drugs known as JAK inhibitors. They work by inhibiting the activity of one or more of the Janus kinase family of enzymes (JAK1, JAK2, JAK3, TYK2), which are commonly mutated and overactive in inflammatory diseases, myeloproliferative disorders, and various cancers.

Two drugs in the JAK inhibitor class of drugs are already approved by the U.S. Food and Drug Administration (FDA). The first one is Jakafi (ruxolitinib), which was approved by the FDA in November 2011 for the treat­ment of myelofibrosis, a bone marrow disorder in which the marrow is scarred. Jakafi was also developed by Incyte. The second drug, which is being marketed by Pfizer, is Xeljanz (tofacitinib), which was approved by the FDA in November 2012 for the treatment of rheumatoid arthritis.

Participants in the Phase 2 trial of INCB47986 in MDS must be 18 years or older; have de novo MDS (mean­ing MDS without having had another cancer previously); be transfusion-dependent or be resistant (re­frac­tory) to, or unlikely to respond to treatment with, red blood cell-stimulating agents (erythropoiesis-stimulat­ing agents).

Participants may not previously have received treatment with Vidaza (azacitidine) or Dacogen (decitabine) or immunosuppressive therapy for their MDS, and they may not have the del(5q) chromosomal abnormality.

For more information on the INCB47986 trial, including trial locations, please see the clinical trial de­scrip­tion.

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[ by | Apr 12, 2014 10:30 am | Comments Off ]
Large Study Sheds New Light On Tissue-Type Mismatches And Their Impact On Stem Cell Transplant Outcomes

Significant improvements in donor stem cell trans­planta­tion have been made in recent years and. As a result, the procedure has become safer and typically more successful for patients.

The majority of patients undergoing donor stem cell trans­planta­tion receive stem cells from unrelated donors. In these cases, a close match between donor and recipient tissue types is known to play an important important role in trans­plant outcomes.

A group of German researchers last fall published results of a large retrospective study about tissue typing in donor stem cell trans­planta­tion for a …

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[ by | Apr 9, 2014 10:38 am | 28 Comments ]
My MDS: Battling Infections

In this column, I am going to tell you about my susceptibility to a specific infection prior to my mye­lo­dys­plas­tic syn­dromes diag­nosis and thereafter.

It is not a pleasant story, but it may nevertheless be of interest to other myelo­dys­plas­tic syn­dromes (MDS) patients because MDS patients are at a high risk of de­veloping infections, especially when their white blood cell counts are low.

Even before my MDS diagnosis, I had been suffering from recurrent blad­der in­fec­tions for decades. Why? Nobody can tell. About ten urologists have already seen my bladder …

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