Forum Replies Created
-
AuthorPosts
-
whitleywrites1Participant
Age and physical health seemingly has a big effect on how well you handle the medication and the disease itself. My grandmother started VIDAZA with a blast count of 16% in her bone marrow and extremely low platelet counts. She would average at about 5-9 , she had to get transfusions practically everyday before they stopped the perfuse bleeding she was experiencing. After that, 17 or 20 and they would continue to drop and she would have to get weekly transfusions. She was only able to receive two rounds of the VIDAZA because she developed infections that she had to recover from. After the second dosage (that she received 2 months after the first round due to infection) she gained another infection and by this time, she’d developed secondary Acute Myeloid Leukemia (44% blast). So, if you have a high risk MDS, I’d suggest doing some research, and requesting your doctor treat you immediately, the journey will be hard, but it beats not getting treated at all and getting AML and further being considered as terminally ill as they have done with my grandma. Every doctor does not follow the same protocol. There are so many studies out there, please take the time to research.
whitleywrites1ParticipantDeborah,
I am so glad to hear that you eventually got some results. I hate that it took so long, watching my grandmother suffer has been truly a rough journey, but I know its been rougher for her-so I stay strong. I pray that you get better and stay better. I am happy for life in you. <3whitleywrites1ParticipantHello Karen, I just wanted to encourage you on this journey with you dad. First, its all about how your dad feels about it. But, I would like to encourage you in the Lord. Quality of life is often questioned at times like this because they want to know would you like to die peacefully or painfully. However, I first had to listen to my grandmother, she is 63 years old, and she initially had MDS, she too suffered multiple issues that caused her pain. She too had to wait for infections to pass in order to get the VIDAZA. With all of the delays, this resulted in her getting secondary AML. So many times, my grandma was weak, in pain, she cried some days, some days she was very confused, but Karen, through it all, she always said “God got me” she never gave in to the diagnosis, she always steadfast with God. Now, my grandmother is in the hospital on the ventilator and as her power of attorney, I am carrying out her will to fight, despite the fact that doctors hold concern for the quality of life. I know that God is able, even when my grandma got her diagnosis of AML, she said “I’m going to fight”. My grandma is also a breast cancer survivor of 20 plus years, even then, they had given up on her- so she knew the struggle that was ahead of her when she made the conscious decision to fight. Karen, I encourage you to do your research, look into studies that have been done, and know as much as you can. I have learned in this journey that doctors will tell you only what they think you don’t know. I have read some studies that tells us that high risk MDS should be treated with an urgent approach, so now that we are at AML, and she’s older, debilitated, etc. she’s been given a death sentence. If I could turn back the hands of time, I would’ve tried to get my grandma with another doctor that would’ve treated her MDS more urgently. The difference in AML and MDS is, they try to wait things out with MDS, with AML they can treat regardless of infection or not because the key is to get the white blood cells under control to attempt to reach a remission. However, in older patients, they don’t really like doing the standard treatment when it gets to that point. Talk with your dad, you guys pray and see what he wants. I am holding faithful to God, if she’s going to die from leukemia, she’s going to die trying to fight this trusting God totally. Things are not always how they look. Currently, they are treating my grandmother with low dose chemotherapy (Dectabine) and so far, the counts are going down day by day. I visit her everyday (sometimes with a day or 2 break) and pray over her, read scriptures to her, and speak positivity into her. I hope I’ve said something to help you figure this all out Karen. God be with you. -Whitley E.
whitleywrites1ParticipantHello, I was wondering how your mom is doing. My grandmother was diagnosed with AML 3 weeks ago now. They stopped giving her hydroxyurea because they said it was taking her counts down too fast. As of now, there is not treatment being done for the AML, just trying to get her weaned of the ventilator and praying the antibiotics help her infections.
whitleywrites1ParticipantOMG, I hate to hear that 🙁 I wish that we could afford to take her to a hospital out of state. I tried to contact one of the cancer centers of America facilities, but they said they weren’t taking any new Medicare patients. Here in Little Rock, Arkansas- we have a Cancer Insitute that we got her transferred to. Since she was at the regular hospital so long- they ended up putting her on the ventilator saying that it would keep her from dying since her breathing wasn’t doing well (she was breathing too fast and through her mouth and wasn’t getting enough oxygen to her body; in the middle of the night, she took her bipap mask off and the suggestion of the vent was the results) They’ve been trying to wean her off the vent, but she was still breathing really fast. They keep saying they don’t want to treat her with the standard treatment for AML, but they won’t explore the studies of using lower dosage chemo therapies just to TRY because of this vent. However, they are nicer here and more willing to do what we want as far as supporting her through this tough time. At the regular hospital, they were only pushing the fact that she’s dying. One doctor said we were being unethical. My grandmother put me over her for a reason, she’s requested to fight this within reason. If my grandmother does leave this world, I want to say I followed through with her request and fought and not simply gave up because I was criticized and made to feel ‘bad’. Thanks so much for your response, I really do appreciate it-and again, I am so sorry to hear about your mother. 🙁
whitleywrites1ParticipantI am so sorry to hear that. 🙁 Thanks for sharing with me. My grandmother started with Vidaza, and they kept stopping the treatment to deal with the infection, so out of 7 months, she only got 2 rounds of the Vidaza. There was a medication called ‘Promacta’ the doctor tried her on, to help her produce her own blood cells, and it just seem to cause an onset of severe lower flank pain that caused her to have issues with walking. The first time, she got past that hurtle, but this time, it’s taking her a while to recover. Turns out, she had an abscess pressing against her kidney. So, they’re draining the abscess, the kidney, plus she has pneumonia, and sepsis (infection of the blood). They didn’t want to treat her with anything for the Leukemia, even after we told them about the different studies that were out there. Fortunately, we were able to transfer her to our local hospital that has a cancer institute, they’re not sounding to optimistic either, but they’re more willing to support what we want. We were able to talk one of the doctors into trying a chemo pill called ‘Hydroxeria’ on my grandmother, that brought her WBC counts down drastically, but not all the way. So, now we are kind of at a stand still until we can get her off of the vent. She’s been on for a few days-she was having trouble breathing with the pneumonia. 🙁
whitleywrites1ParticipantHi, I was wondering what ever happened with your dad? My grandmother isn’t in very good health either right now. They’re not wanting to try anything, but we’ve been reading about different trials to at least give her a chance instead of giving up. I pray all went well.
whitleywrites1ParticipantWhatever happened with your mom? My grandmother was diagnosed with MDS last year, she started Vidaza, ended up having to hold off on treatments because of MRSA & Pneumonia as well. Now, she’s recently been diagnosed with AML. Now it’s really hard to fight off the infections she has at the moment. Interested in knowing more about your mothers situation. Thanks.
-
AuthorPosts