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MemberHi Judy, In patients receiving disease modifying treatments for MDS, the WBC count is commonly reduced in the early months of treatment. If neutropenia (low WBC count) is severe, your health care provider may feel it is necessary to modify your MDS treatment by holding the medication temporarily until the neutrophil count recovers.
MemberDear Frank, Second opinions can be useful to evaluate the appropriateness of the treatment plan. A second opinion need not mean that you’re changing doctors, however; if you wish to seek the advice of another hematologist who has particular expertise in MDS, a second opinion can be very useful in helping you and your preferred doctor to fine-tune your treatment plan. If you would like to seek a second opinion, please contact the MDS Foundation at 800-MDS (637)-0839 and we can arrange a preferential appt. for you at one of our MDS Centers of Excellence.
MemberHi Kandy, Fatigue is a common complaint among MDS patients, and may be related to several factors. MDS-related anemia is a common cause of fatigue. We have a wonderful new global personalized educational program containing information and strategies for patients living with MDS. You can view the online virtual version of our Building Blocks of Hope program on the following link https://www.mds-foundation.org/bboh/. Here you can also download the pdf version. I hope this helps. If you have any additional questions, feel free to contact the MDS Foundation at 800-MDS(637)-0839.
MemberThank you for your post. I know this is a difficult situation for you and I would recommend that you go to one of our Centers of Excellence in MDS for a second opinion. You should be very carefully assessed before undergoing any treatment. Benefits versus risk analysis should be done with any treatment except supportive care like transfusions or epogen (Procrit). The MDS Foundation will be happy to help. Please give us a call at 800-637-0839.
MemberSutent is an oral drug in the MTOR inhibitor class. It is approved for use in GIST tumors and Renal Cancer. Clinical trials have been primarily in solid tumors. ALL is a lymphoid malignancy – so very different than MDS which is in the myeloid family. To date, there has not been any benefit noted using these drugs (Sunitinib, Sorafenib) for MDS – they have been studied in a subset of patients with AML who carry the FLT3 or C-Kit abnormality with limited benefit. These targets are not common in MDS or AML that has evolved from MDS. Additional information can be found on the NCI website to find out about current clinical trials for MDS: http://www.clinicaltrials.gov<http://www.clinicaltrials.gov/> there is a field to enter the disease state – here you would enter MDS. Another helpful resource is the FDA approval site for approved indications: http://www.cancer.gov<http://www.cancer.gov/> there is a field to enter a drug name.
MemberI know this is a difficult situation for you and I would recommend that you take her to one of our Centers of Excellence in MDS for a second opinion. Your mother should be very carefully assessed before undergoing any treatment. The first rule with MDS is to do no harm, i.e., don’t make the disease progress faster. Access the following link for centers in your region https://www.mds-foundation.org/mds-centeres-of-excellence/
MemberThe MDS Foundation has a new Building Blocks of Hope educational packet – one section covers diet. To request your free copy, contact the MDSF at their toll free number 800.MDS(637).0839.
MemberHappy to let you know that there is an MDS Center of Excellence right in Indianapolis –
Dr. Larry Cripe
Indiana University Medical CenterCall the MDS Foundation at 800.637.0839 and we can assist in setting up a preferential appt. for you.
MemberTry pressing a cool or warm washcloth on sore spot for 15 mins. at a time. No ice or hot compress. Ice may affect how azacitidine gets into bloodstream. If you aren’t already doing so, choose a different site to give the shot each time – stomach, upper thigh or upper arm for example. If the reactions can’t be tolerated, your physician may recommend switching to IV and getting a port – no difference in effectiveness whether subcutaneous or intervenous.
MemberThank you for your patience with our response – There has not been any evidence that Enbrel is related to the development of MDS.
MemberHi Richard, We are checking on this for you with one of our physician specialists. So far we know that Enbrel can cause lymphoma, but I have not seen it linked to MDS, so I need to investigate further and will keep you posted.
MemberThanks John – Received it.
MemberNoticed your question and would like to assist and contact a pediatric MDS specialist on your behalf. Please email patientliaison@devmdsfound.org.php53-13.dfw1-2.websitetestlink.com with your email/postal address.
MemberI have updated the link: MDS Forums https://www.mds-foundation.org/forums/ so that it should show the "Remember me on each visit" check box on the login page. *It will not show up if you are already logged on. It only show up if you have logged out and then try to visit the forum again. By checking the box you are specifically telling the site to remember you IF YOU DO NOT LOG OUT*
Please note: If you Log out when you are done (which is strongly advisable for any website that you visit for security reasons) then you will be prompted to re-login on the next visit.
When you click the Log out button you specifically tell the site to forget your info. so that is why you need to re-login again on your next visit.
"IF" you did not Log out but instead closed your browser then the next time you visit the forum you "should" be able to get back in automatically. "Should" but not always because your browser, firewall, or other Internet security feature on your computer might clear out your cache, temporary memory, or cookies which might make the browser forget that you were already logged on.
MemberPlease read the QUICK OVERVIEW on how to use the forum at the top of the forum list.
MDS Webmaster
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