Mylotarg

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• March 3, 2005 at 6:17 am #4431
  MichaelL

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  My father (73) had MDS and it converted into AML (with 90% of blasts) in May of 2004. Since then he had 2 treatments with FLAG chemo and his blasts disappeared for 4 months. He relapsed in December with 75% of blasts. Few choices were offered – Mylotarg and Experimental study Ida Rubicin with EL625. He agreed to go with the study. First treatment was in the mid. December and after that was sick with pneumonia for 2.5 weeks (had also water retention issue and his weigh increased by 25 lb). Second treatment was done in the mid Jan. of 2005. Few weeks ago he had his BM test. He has 50% blasts. In the mean time, my father feels fine, has good appetite, walks mile per day, drives his car and continues going to the hospital for the transfusions few times per week. His doctor told us that only option for him would be HOSPICE at this time. This means that no regular transfusions anymore, only if he will be symptomatic. In my understanding, if person has normal quality of life why does he have to be signed up for HOPICE?
  He can drive to the transfusion center to get his blood or platelets as needed. Why if they cannot offer any treatment he cannot come for the regular transfusions? I asked: “What do you call the symptom?” He said: “Bleeding”
  My father does not want to give up and wanted more treatments or something done. He asked doctor for another rounds of chemo or something else. Doctor got agreed to administer MYLOTARG. We also got a second opinion where doctor mentioned VIDAZA. We are still trying to learn more about both of them. I would like to hear from someone about MYLOTARG. Please share your concerns.

  March 3, 2005 at 3:52 pm #4432
  B. Greene

  Member

  It sounds like you are in about the same spot we are in. Ron is younger and has had more chemo but about the same results. Last Friday his blasts in the blood, not the marrow, were 83% so you know the marrow is even worse. While Ron has managed to achieve peace with his decision of no more chemo I am about to lose my mind over it. Mylotarg has been discussed along with Vidaza. Our Dr. said he couldn’t get Vidaza when the blasts were as high as yours and ours. He said he could try. He said he would rather do Mylotarg than V. That said he doesn’t think My alone will work. His suggestion was Ara C and My. This is a second relapse for us and he has hit it on the head every time with his timetables. We have gastro problems to contend with which make it harder. Ron can’t stand another round of heavy chemo he nearly died last round. Dr. stated if we did the heavy round he would be in the hospital at least six weeks and if we did succeed it getting a remission it would be short term, probably in the three month range.
  My arrests the counts much longer than some of the other chemo and thus the risk of infections are high. It is a horrible choice and I have read some real horror stories on My but most have to do with the non existent counts for so long which we are facing anyway if we do nothing.

  I have spoken with Dana Farber about their vaccine. If Ron were in better shape we would make the trip to Boston and try it. No side effects from it. But, it takes about 9 weeks for the protocol and frankly I doubt that Ron has that long. They have not had any complete remissions but they have arrested the disease and some have lived for two years which at this point would be nothing short of a miracle. The advantage of this is no toxicity and not killing them with the chemo.

  We are getting the same info on Hospice but I will not go that route due to the tx. If you stop the tx this impairs their breathing and I can not think of anything much worse than suffocating to death. They also will not allow the antibiotics to help with infections so we have marked them off for at least now.

  I am trying to get some info on Hydroyurea but the answers are so conflicting. Our Dr. at first said it was the eaiest way to go but then turned around and said it didn’t prolong life but at the same time the nurses said they have patients who are doing well and have been on it for over a year. So frustrating.

  What concerns me the most is that Ron is starting to show signs of gastro involvement and also the mouth sores. It would seem to me if you are going to experience the same miserable conditions doing nothing that you do doing chemo I may be way off here but why not try something.

  There are no good answers as every dr. we have consulted states. I simply can not find any kind of peace with doing nothing but bottom line it has to be their decision. Ron wants to stay home not die in some hotel room or hospital away from his family and I have to respect that but it is damnabley hard.

  I will tell you in our case this has come on hard and fast. I think it depends on the person and how fast his blasts and white count are accelerating. In only three weeks Ron went from 23 to 83. They didn’t even bother with a BMB it was so bad. The previous week showed no blasts at all so this is ugly nasty stuff. Last week Ron was still walking his miles, eating great, felt fine, a little breathless due to the lower hg but this week things are very different. My suggestin would be if you are going to try something do it quickly. If we had jumped on the vaccine immediately we would already be in the treatment but I didn’t know about it.

  I am so crazy I forgot the most important thing. M D Anderson’s vaccine. We could not qualify. You must be HLA 2 positive with one allele rod. They are having enormous success with this vaccine. Much better than Farber. You can immediately check with your dr. and see if he would qualify. Again no side effects and they were running about 75% positive. FLT 3 is also another option. If you are FLT 3 positive they are having good results but it I don’t believe has been as good as MDA vaccine.

  Hope this helps let me know how things are going.

  We have an appt tomorrow morning and will try to find out more.

  March 3, 2005 at 6:49 pm #4433
  MichaelL

  Member

  Barbara,

  Thank you very much for your caring reply.
  I am very sorry to hear what Ron is going through. There is always a hope for the better.
  You seem to be a lady who can fight for the better treatment choices!!! I admire people like you. Keep us all posted on the Ron’s condition.
  We asked doctors about MD Anderson’s vaccine and they were sceptical about it and did not recommend it. Can you please send me info on the leukemia vaccine at Dana Farber in Boston?
  It seems that they have a few…
  Please reply asap.
  Thanks,
  Michael L

  March 3, 2005 at 10:54 pm #4434
  MichaelL

  Member

  Doctors did not recommend us to have Vidaza done and said that it is not for my father at this time. So, we have only Mylotarg left as of now.
  His doctor said that he will be administering just Mylotarg by itself, without ARA-C.
  Can anybody comment on it?
  May be someone knows about chemo with just MYLOTARG by itself?

  March 4, 2005 at 4:09 am #4435
  B. Greene

  Member

  Go to their website and leukemia dept. Dr. Richard Stone is head of the program. Illene Galinsky is the nurse coordinator but she is hard to get sometimes. Stone’s office number is 617 632 2214. I’m surprized at their reaction to Anderson’s I think it is showing far better results than Farber’s. Something like 75%. You might pop on the Leukemia board and ask they probably use more Mylotarg on that website.

  March 5, 2005 at 5:54 pm #4436
  Jimbob

  Member

  Barbara,
  You and Ron are constanly in my prayers. We know that positve resuts are possible. It is a miracle that I am still here. After dx in Feb 2003, I was abke to bring all of my counts into the normal ranges. I still had CMML, but thought I was beating it on my own. Then 3 weeks later my WBC count went from 14k to 385K, 95% blasts with 85% of that leukemic. Things went down hill from there unitl I turned it over to God. Miracles are not only possible but happen. We can pray that Ron will be able claim one soon.
  Jim

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