http://forums.marrowforums.org Marrowforums is a discussion forum for patients with bone marrow failure diseases such as Aplastic Anemia (AA), Myelodysplastic Syndromes (MDS), and Paroxysmal Nocturnal Hemoglobinuria (PNH), their family members, friends, and caregivers. en Sat, 19 May 2012 08:44:31 GMT vBulletin 60 http://forums.marrowforums.org/images/misc/rss.jpg http://forums.marrowforums.org http://forums.marrowforums.org/showthread.php?t=2901&goto=newpost Fri, 18 May 2012 19:15:55 GMT Hi All, Here is new info about Sapacitabine to patients refractory to Vidaza or Dacogen: http://abstract.asco.org/AbstView_114_100138.html Kind regards Birgitta-A Hi All,
Here is new info about Sapacitabine to patients refractory to Vidaza or Dacogen:
http://abstract.asco.org/AbstView_114_100138.html
Kind regards
Birgitta-A ]]> News and Events Birgitta-A http://forums.marrowforums.org/showthread.php?t=2901 http://forums.marrowforums.org/showthread.php?t=2900&goto=newpost Fri, 18 May 2012 18:55:57 GMT Hi All, Here is a study about iron chelation in MDS patients. http://www.ncbi.nlm.nih.gov/pubmed/22564985 Kind regards Birgitta-A Hi All,
Here is a study about iron chelation in MDS patients.
http://www.ncbi.nlm.nih.gov/pubmed/22564985
Kind regards
Birgitta-A ]]> Transfusions and Iron Overload Birgitta-A http://forums.marrowforums.org/showthread.php?t=2900 http://forums.marrowforums.org/showthread.php?t=2899&goto=newpost Fri, 18 May 2012 06:28:13 GMT Hi to all, Greetings from New Zealand I was diagnosed with MDS last June and now have 2 weekly blood transfusions which have caused Iron Overload. I am soon to have a chelation pump and wondered if those who have this treatment could tell me their personal thoughts about it. Are there side effects? and how is it attached so that it dosent move when sleeping, my haemo said it is taped, but this dosent seem very secure to me, as I move around a lot while sleeping, any tips on this would be appreciated. Today I had a MRI and was a bit worried about claustrophobia, I had a good look at the machine before going in it, and was happy to see that the end of it was open and not the dreaded closed in tunnell. If anyone whose going to have this MRI and is worried dont be, I just shut my eyes and listened to all the noise it makes and it was over in no time. I had this - to see if Iron overload has damaged any organs. Hence the future Chelation Pump. Bless you all. Delwyn. Hi to all,
Greetings from New Zealand
I was diagnosed with MDS last June and now have 2 weekly blood transfusions which have caused Iron Overload.
I am soon to have a chelation pump and wondered if those who have this treatment could tell me their personal thoughts about it. Are there side effects? and how is it attached so that it dosent move when sleeping, my haemo said it is taped, but this dosent seem very secure to me, as I move around a lot while sleeping, any tips on this would be appreciated.
Today I had a MRI and was a bit worried about claustrophobia, I had a good look at the machine before going in it, and was happy to see that the end of it was open and not the dreaded closed in tunnell. If anyone whose going to have this MRI and is worried dont be, I just shut my eyes and listened to all the noise it makes and it was over in no time. I had this - to see if Iron overload has damaged any organs. Hence the future Chelation Pump.
Bless you all.
Delwyn. ]]> MDS shanghied6 http://forums.marrowforums.org/showthread.php?t=2899 http://forums.marrowforums.org/showthread.php?t=2898&goto=newpost Thu, 17 May 2012 16:57:32 GMT :)Hey everyone:

Got a call from Moffitt yesturday, they found a 9 point match. They still have to other donors blood to come back. Really would like a 10 point match. So I guess, we are still at holding mode. I'll keep you all informed.

God Bless
Anneg ]]> MDS Anne Yeomans http://forums.marrowforums.org/showthread.php?t=2898 http://forums.marrowforums.org/showthread.php?t=2897&goto=newpost Wed, 16 May 2012 20:32:53 GMT From the MDS Beacon... _Thalidomide-Trisenox Combination May Be Effective And Safe In MDS Patients_ by Jessica Langholtz and Maike Haehle Results from a small study conducted in China suggest that combination therapy with thalidomide and Trisenox is an effective and safe treatment for myelodysplastic syndromes. Patients who received the combination therapy experienced higher response rates and longer survival times than patients who received best supportive care. However, the study investigators indicated that larger-scale studies are needed to confirm the results. Both Thalidomide (Thalomid) and Trisenox (arsenic trioxide) have been previously investigated as potential treatments for myelodysplastic syndromes (MDS). Thalidomide, which is closely related to Revlimid (lenalidomide), has effectively been used in combination with cyclosporine (Sandimmune) to treat MDS (see related Beacon news). Trisenox has recently been tested in combination with cytarabine (Cytosar-U). The study results showed, however, that Trisenox did not improve upon results found with cytarabine alone (see related Beacon news). According to the Chinese investigators, the two drugs have rarely been used in combination in MDS. They hypothesized that the two-drug combination may be effective because they employ two different approaches to target and minimize cancer. In the present study, the investigators compared survival outcomes of 22 MDS patients who received thalidomide in combination with Trisenox between June 2003 and December 2010 with those of 22 MDS patients who received best supportive care during the same period. According to the investigators, the patient characteristics of the two groups were comparable. Patients received a starting dose of 50 mg thalidomide daily that was increased to 100 mg daily within three to seven days. In addition, they received 10 mg of Trisenox daily for five consecutive days per week for two weeks, followed by two weeks off, for a total of 16 weeks. Patients who responded to treatment received thalidomide for an additional 12 weeks. Patients who did not respond were switched to best supportive care or another treatment. The median follow-up time was 18.5 months. After 16 weeks , 68 percent of patients receiving the thalidomide-Trisenox combination achieved improved blood cell counts, compared to 27 percent of patients receiving best supportive care. In addition, 5 percent of patients receiving the thalidomide-Trisenox combination reached a complete remission and 15 percent reached a partial remission. Approximately 21 percent of patients dependent on red blood cell transfusions achieved transfusion independence with the thalidomide-Trisenox combination, compared to 6 percent of patients who received best supportive care. An additional 32 percent of patients receiving the thalidomide-Trisenox combination had more than a 50 percent reduction in transfusion needs compared to 17 percent of patients who received best supportive care. Patients who received the thalidomide-Trisenox combination had longer median progression-free and overall survival times (26 months and 36 months, respectively) than patients on best supportive care (10 months and 16 months, respectively). Sixty-eight percent of patients continued treatment with thalidomide alone after the 16-week treatment with both thalidomide and Trisenox. Of those, 18 percent progressed or relapsed on thalidomide alone and returned to the combination treatment. The most commonly observed side effects of the combination treatment included constipation (23 percent of patients), fluid retention (23 percent), rash (18 percent), and low platelet counts (18 percent) For more information, please refer to the study in Leukemia Research (abstract). From the MDS Beacon...

Thalidomide-Trisenox Combination May Be Effective And Safe In MDS Patients
by Jessica Langholtz and Maike Haehle

Results from a small study conducted in China suggest that combination therapy with thalidomide and Trisenox is an effective and safe treatment for myelodysplastic syndromes.

Patients who received the combination therapy experienced higher response rates and longer survival times than patients who received best supportive care.

However, the study investigators indicated that larger-scale studies are needed to confirm the results.

Both Thalidomide (Thalomid) and Trisenox (arsenic trioxide) have been previously investigated as potential treatments for myelodysplastic syndromes (MDS).

Thalidomide, which is closely related to Revlimid (lenalidomide), has effectively been used in combination with cyclosporine (Sandimmune) to treat MDS (see related Beacon news).

Trisenox has recently been tested in combination with cytarabine (Cytosar-U). The study results showed, however, that Trisenox did not improve upon results found with cytarabine alone (see related Beacon news).

According to the Chinese investigators, the two drugs have rarely been used in combination in MDS. They hypothesized that the two-drug combination may be effective because they employ two different approaches to target and minimize cancer.

In the present study, the investigators compared survival outcomes of 22 MDS patients who received thalidomide in combination with Trisenox between June 2003 and December 2010 with those of 22 MDS patients who received best supportive care during the same period.

According to the investigators, the patient characteristics of the two groups were comparable.

Patients received a starting dose of 50 mg thalidomide daily that was increased to 100 mg daily within three to seven days. In addition, they received 10 mg of Trisenox daily for five consecutive days per week for two weeks, followed by two weeks off, for a total of 16 weeks.

Patients who responded to treatment received thalidomide for an additional 12 weeks. Patients who did not respond were switched to best supportive care or another treatment.

The median follow-up time was 18.5 months.

After 16 weeks , 68 percent of patients receiving the thalidomide-Trisenox combination achieved improved blood cell counts, compared to 27 percent of patients receiving best supportive care.

In addition, 5 percent of patients receiving the thalidomide-Trisenox combination reached a complete remission and 15 percent reached a partial remission.

Approximately 21 percent of patients dependent on red blood cell transfusions achieved transfusion independence with the thalidomide-Trisenox combination, compared to 6 percent of patients who received best supportive care.

An additional 32 percent of patients receiving the thalidomide-Trisenox combination had more than a 50 percent reduction in transfusion needs compared to 17 percent of patients who received best supportive care.

Patients who received the thalidomide-Trisenox combination had longer median progression-free and overall survival times (26 months and 36 months, respectively) than patients on best supportive care (10 months and 16 months, respectively).

Sixty-eight percent of patients continued treatment with thalidomide alone after the 16-week treatment with both thalidomide and Trisenox. Of those, 18 percent progressed or relapsed on thalidomide alone and returned to the combination treatment.

The most commonly observed side effects of the combination treatment included constipation (23 percent of patients), fluid retention (23 percent), rash (18 percent), and low platelet counts (18 percent)

For more information, please refer to the study in Leukemia Research (abstract). ]]> News and Events Sally C http://forums.marrowforums.org/showthread.php?t=2897 http://forums.marrowforums.org/showthread.php?t=2896&goto=newpost Wed, 16 May 2012 19:17:36 GMT I was wondering if anyone knew anything about rights regarding work. I am currently off payroll from my civil servant job. I have been informed if I do not return to work by November 14, 2012 I will lose my position. I must be able to return full time. Following a slow recovery from a MUD transplant, My dr. is suggesting that if I am able to return at that time I should start out part time and work up to full time. Since I have learned that MDS patients frequently meet the requirements of disabled, would I qualify to require the workplace to "modify" my work day by allowing part time work until I am able to work full time? Besides the income, it is very important I am able to return to work as I am about to reach my 10 yr anniversary which will grant my husband and myself medical coverage for the rest of our lives. ]]> Insurance, Finances, Disability donna j. http://forums.marrowforums.org/showthread.php?t=2896 http://forums.marrowforums.org/showthread.php?t=2895&goto=newpost Wed, 16 May 2012 04:39:25 GMT Hi All,

I by no means a medical expert, so I hope this makes sense.

My father (59) has just been diagnosed with RARS (low IPSS score 0), but I'm keen on getting other opinions after reading.

He mentioned a few months ago when he was tired all of the time that he has hemochromatosis (been diagnosed years ago, but has had no problems). He is still currently fatigued and feels like he hasn't slept at all after a solid nights sleep. The Oncologist has referred him to a sleep specialist?!

During the diagnosis of RARS he had blood draws to reduce the iron levels and was advised not to drink for 3 months (he smokes heavily also). I assume this was to rule out other other diagnoses?

He had a BMB and the results confirmed he has high iron levels and abnormally shaped large RBC's with sideroblasts (don't have his bloods handy at the moment). Everything else is normal and relatively stable over several months of tests (WBC and platelets etc). The pathology report suggests that it's probably RARS, as confirmed by his Oncologist (who probably just read the report).

So far he has been put on vitamin B and folate tablets and told by the Oncologist to come back in 3 months for blood tests. So from my reading I guess this is the watch and wait stage of MDS?

What I'm not sure on is if the oncologist know's about his past hemochromatosis diagnosis. Dad assures me that his GP would have advised him...I'm not so sure. I'm also not sure if this affects what's been discovered in the BMB.

From what you all understand on here, could it be anything other than MDS? From what I can read it seems odd to have hemochromatosis that turn's into MDS?

Please let me know if you need any more information to help answer/comment.

Cheers,

Sam. ]]> MDS SJF http://forums.marrowforums.org/showthread.php?t=2895 http://forums.marrowforums.org/showthread.php?t=2893&goto=newpost Tue, 15 May 2012 04:23:04 GMT Just wondering if others have had severe aplastic anemia and then developed other autoimmune illnesses after treatment with Gengraf and immunotherapy. If so what kinds of autoimmune illnesses have others been diagnosed with? Thanks,Ellen Just wondering if others have had severe aplastic anemia and then developed other autoimmune illnesses after treatment with Gengraf and immunotherapy. If so what kinds of autoimmune illnesses have others been diagnosed with? Thanks,Ellen ]]> AA Ellen McDonough http://forums.marrowforums.org/showthread.php?t=2893 http://forums.marrowforums.org/showthread.php?t=2892&goto=newpost Mon, 14 May 2012 21:26:03 GMT Beacon NewsFlashes - May 14, 2012
by Maike Haehle

FDA Announces Update About Revlimid And Second Cancers – The U.S. Food and Drug Administration (FDA) issued an extensive update last week regarding the risk of developing a second cancer while being treated with Revlimid (lenalidomide). The FDA conducted an analysis that shows that patients newly diagnosed with the blood cancer multiple myeloma who are treated with long-term Revlimid therapy are nearly three times as likely to develop a second cancer than patients not treated with Revlimid. In the update, the FDA says that it continues to recommend that physicians monitor patients being treated with Revlimid for the development of second cancers, and that physicians take into account both the potential benefit of the drug and the risk of second cancers when considering treating a patient with Revlimid. Revlimid is currently approved for the treatment of myelodysplastic syndromes (MDS) patients who are transfusion-dependent and have a deletion in chromosome 5. It also is approved for the treatment of patients with multiple myeloma who have received at least one prior therapy. For more information, please see the full text of the FDA update as well as previous Beacon articles about Revlimid and second cancers.

Onconova Announces Phase 2 Clinical Trial Of Oral Estybon In MDS – Onconova Therapeutics last week announced the start of a Phase 2 clinical trial of its investigational drug Estybon (rigosertib, ON 01910.Na) in MDS. The study will evaluate the effectiveness of the oral formulation of Estybon in reducing the transfusion needs of transfusion-dependent lower-risk MDS patients. Estybon works by inhibiting cell growth and selectively killing cancer cells. The intravenous formulation of Estybon is currently being investigated in a Phase 3 trial for refractory MDS in the U.S. and Europe. For more information about the Phase 2 study, please see the Onconova press release or the clinical trial description.

Living With MDS Conference For Patients And Families – The Aplastic Anemia and MDS International Foundation (AA&MDSIF) will hold a free, one-day conference about living with MDS in Atlanta on May 19. Patients and their families are invited to learn about developments in the diagnosis and treatment of MDS from MDS experts. The program will run from 8:30 a.m. till 5 p.m., and a complimentary breakfast and lunch will be provided. Advance registration is required. For more information or to register, please see the AA&MDSIF website. ]]> News and Events Sally C http://forums.marrowforums.org/showthread.php?t=2892 http://forums.marrowforums.org/showthread.php?t=2890&goto=newpost Mon, 14 May 2012 02:54:50 GMT I am 20 months+ post transplant from a perfect donor match from my brother. The only issue I have had is flare ups of liver GVHD which only show in the blood work with high ALT/AST levels. When it happens, they up my dose of Prednisone around 20mg, the liver enzymes return to normal, and they taper me off Pred. But before I go all the way off, the liver flares up again and I go through another cycle.:mad: For those of you who have had liver issues, how long does it take before the flareups end and your donor cells stop attacking your liver :eek: And a more general question, how long does it take to completely get off all drugs, on average, if you have gone through standard treatment of care and have had relatively few post transplant issues? I am 20 months+ post transplant from a perfect donor match from my brother. The only issue I have had is flare ups of liver GVHD which only show in the blood work with high ALT/AST levels. When it happens, they up my dose of Prednisone around 20mg, the liver enzymes return to normal, and they taper me off Pred. But before I go all the way off, the liver flares up again and I go through another cycle.:mad:

For those of you who have had liver issues, how long does it take before the flareups end and your donor cells stop attacking your liver :eek:

And a more general question, how long does it take to completely get off all drugs, on average, if you have gone through standard treatment of care and have had relatively few post transplant issues? ]]> Transplants Flamingo Jim http://forums.marrowforums.org/showthread.php?t=2890