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lynette
MemberHi Shila
My Mom had excellent results w/ arsenic(Trisenox). It is FDA approved for APL, now in clinical trials for AML, myeloma, etc. It does not work like Vidaza. We were quoted a remission rate of 40% when used with low dose ARA-C.
LynetteMemberHi
My Mom chose the same path that Pierre’s Mother chose at NYP. Also successful, thankfully. We have been very pleased w/ medical care. She would probably not be alive had we not brought her to a center of excellence.
LynetteMemberHi Janice and Kristy,
I asked the docs at NYP about Decitibine as maintenance instead of the Arsenic and ARA-C. Right now, the ARA-C is working well for Mom, so he didn’t want to switch. Also, Decitibine has only been approved for MDS, not AML. Therefore, if one has developed AML, he/she must be part of a clinical trial as insurance will not pay for the Decitibine if it is prescribed “off label” for AML. Janice, it’s interesting w/ your Dad. His blasts cells would meet the criteria for AML, however, if he is able to receive it at a local hosptial(not part of a trial), he probably still had MDS.
Good luck with the new medicine–I’m hoping that it helps and he has a great summer!
LynetteMemberPierre,
In the research that I have done on mini-SCT, it appears that siblings matches have the best outcomes. Indeed, some centers will only do mini-SCT on patients over 70 if the donor is a sibling.
Great news that your uncle was a match!!
LynetteMemberPierre,
Congratulations!!! I know the happiness that you must feel today. I am so glad to hear of your Mother’s remission. My Mom chose the maintenance route. So far, she is doing very well. Good luck with your decision, and celebrate the good news!
LynetteMemberSuzanne,
Beautifully said!! My Mom is in remission as well. I must say, that while we are thankful, every day is colored by the fear that today is the day that the leukemic cells will begin to grow again. I take comfort in your case because although my Mom went a different route to achieve remission, the docs told us that the average period of remission was the same as traditional chemo. Reading your post gives me hope!!
LynetteMemberHi Janice,
My Mom has neuropathy from the Arsenic. It is particularly worse in her feet. Her fingers are slightly affected, however she is still able to knit! The usual recommended dose for B6 is 50mg three times a day. The B6 has slowed the progression, but has not eliminated what was already present.
I’m hoping that your Dad does well on the Decitibine.
LynetteMemberLucy,
My mom was on ARA-C. the side effects are different depending on the route of administration. The injection tends to have less side effects than the IV infusion. Usual side effects include nausea, fatigue, and drop in all counts. There is usually no hair loss from ARA-C.
Regarding the PICC line. One port is enough to administer meds. However, things may go more slowly if she has to receive several meds since they have to now be given one at a time.
Policies for flushing will vary from hospital to hospital. Also, there are certain types of PICC lines that need to be flushed only with Saline. They should be flushed minimally, after each use and once a shift(12hrs). There are ways to de-clot a PICC line. However, methods include using an anticoagulant and this may not be a choice for your mom if her counts(plts.) are very low.
Good Luck and hang in there,
LynetteMemberHi Susan
My Mom was dx w/ MDS in Aug. 05. She had 19% blasts at that time. By Oct. 05, she had progressed to AML with 40% blasts in bone marrow. However, take heart. She received treatment, a phase II clinical trial at NYP in NYC. She is now in remission. The results of the trial have been very encouraging. She receives maintenance medication every 4 weeks. Although during that week she feels very ill, during the rest of the time, she is well. I truly have to remind myself that she has AML. Of course, we do not know how long the remission will last–but we are thankful for everyday that she is in remission.
There are more treatments available for patients over 70. In fact, many of the newer treatments are designed for the elderly. Take your Dad to a Center of Excellence if he is not at one presently. They will have the best options for him!
Good Luck and God Bless you.
LynettteMemberDeepest sympathy to Dee’s family. they will be kept in our prayers.
Lynette
MemberHi LRB,
There are side effects for every medication on the market. However, just because a medication causes BMS doesn’t mean it causes MDS. Any patient that is taking ALtace can have BMS, however, a Bone Marrow Biopsy would show no abnormalities. An MDS person would have abnormalities. Low blood counts are the symptom, not the disease. That is a huge difference!
It is probably best that your MOm is off the Altace either way!
LynetteMemberHi,
Altace can cause suppression of bone marrow ie: RBCs and WBCs. It cannot cause MDS, however, since people w/ MDS usually have low RBCs and /or WBCs, it would be wise to try another medication for BP
LynetteMemberJeff,
I’m very sorry
LynetteMemberKristy,
Great news. I know how happy you must feel!!
LynetteMemberHi Paige,
Sorry to hear about your Dad. Are your Dad’s blast cells above 20-30%. MDS can cause bone pain, but Acute Leukemia is more likely. As the blast cells crowd out the normal cells, the person usually experiences pain. However, has your Dad ever had prostate trouble? At his age prostate cancer should also be considered as a possible cause of metastatic bone pain.
Bone pain can be very, very painful. He will probably need pain medication for good pain control. There are many choices out there.
You’re in my thoughts and prayers,
Lynette -
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