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New Vidaza Patient

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This topic contains 48 replies, has 30 voices, and was last updated by  Ben Dunhill 1 month, 1 week ago.

Viewing 15 posts - 16 through 30 (of 49 total)
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  • #29894

    Deborah
    Participant

    I will begin my 13th round of Vidaza tomorrow. I am 63 yr female diagnosed MDS 5qdel approx 5yrs ago. On Revlimid for 3years at varying dosages and regimens. I believe I should have been taken off of it after i contracted C-diff while on it! Anyway, I finally started Vidaza IV June, 2015. I was very weak, anemic, no neutrophils, and vomiting daily before I started. Extremely low WBC, RBC, and neutrophils. Platelets fine. I needed a port to even do blood tests! Took a long time to control the vomiting (4 rounds) Most people have no problems with nausea with a little premed . The magic drug for me was Kytril injected into iv about 15 minutes before Vidaza. The main side effect I’ve had from Vidaza is fatigue. Anyone that tells you that fatigue is not a side effect of Vidaza is blowing smoke! It’s in all the literature and it is very real! After you go through your nadir, everything gets better including energy levels. The further I get from my 7th day of Vidaza, the better I feel until I’m practically dancing by the last week. I’m on 7 days and off 21 days. I never had any huge improvements in my bone marrow biopsies after 3 months nor after 7 months. I really started to get out of the low blood counts after month 8 with better and better monthly blood counts. I never had any bone or joint pain until month 8. Joint pains and overall aching has increased with each monthly dose since then. My oncologist suggested that I take Claritin daily along with Naproxen if needed. It keeps it manageable. I haven’t been able to find any info on long-term use of Vidaza. When I find a forum on Vidaza, it seems like many people are in bad shape when they start and die after a few months. That has not been very encouraging but my numbers are staying pretty even and I feel much much better. For now, that’s my screed on Vidaza. I have 3 oncologists right now. Transplant is what’s recommended but I really don’t feel emotionally able to deal with that….. I do really poorly on steroids, especially my head!! Staying on Vidaza as long as possible and waiting for the next big discovery has been approved by 2 of the oncologists as a viable and reasonable approach to my MDS. Not having any blood relatives for marrow, makes my odds too low for my liking. If you’re new to Vidaza, If you have any questions, ask me here! I would like to be able to help anyone. I felt SO alone!
    Deborah

    #30138

    Mary Drummond
    Participant

    For many patients, AML is typically connected with a poor prediction and failing quality of life, particularly for those patients who cannot tolerate curative therapies like stem cell transplantation. In Europe, more than 14,000 people suffer from AML, and most of these patients will die within less than 1 year. As an acute leukaemia, AML progresses rapidly and is typically fatal within months if stem cell transplant is not an option. Specific to elderly patients, overall survival with AML has not improved in more than 40 years1, and there is a clear need for treatments that can support this patient population.

    #30295

    Jane Berman
    Participant

    Hi Deborah

    I am new to this and just read your post, up above. My elderly mother (she is 87) was recently diagnosed with MDS Refractory Anemia with excess blasts sub type 1. She is on the same protocol as you, Vidaza 7 days on 21 days off. She is just on her 6th day of the first rounds of shots. She is very down, and so very tired. She has absolutely no energy and it is difficult to get her out of the house for the shots, and up the stairs to her house. Just wondering if you have taken anything for the fatigue? Doctor has recommended American Ginseng, that is it! What about b12 shots? I have no idea how this is going to play out for her. It is super scary for my mom, my dad, myself, the whole family. We really don’t know what to expect. Not sure the doctor is very forthcoming about longevity statistics, etc. Any advice you can give me so that I can help my mom cope better, would be much appreciated. Thank you so much.

    Jane

    #30317

    Deborah
    Participant

    Jane, I’m sorry about your mother. This is a hard road. No bones about it. I have not tried either ginseng or B12. I was told the B12 wouldn’t hurt. No info about it. The big thing about all of these blood diseases is that their forms and patient’s reactions to them and their treatments are incredibly varied. Very few respond in the same way. Makes it hard to develop any help. The fatigue is awful and depressing and debilitating and I have found no way other than to go through it: you must rest, rest, rest. If you are too fatigued to walk, you especially need to confirm with blood tests that her levels of hemoglobin aren’t too low. If she can’t walk, get into the house safely, you need to address that with her oncologists and their team of social workers for every kind of assistance! I have been treated at MDS center for excellence at UCSD and am now back home in Denver being treated at a small hematological practice and infusion center close to my home. They BOTH offer the same extremely broad access to patient and caregiver support. It is free also! bTW, after my 15th round of Vidaza, all my numbers are low again…..no special reason why other than that I’ve been on Vidaza for a long time. I’m getting and needing blood transfusions again and Neupogen and Procrit; haven’t needed them for a long time! No particular reason why. A person like me can apparently survive for a long time with lots of ups and downs and constant treatment or relatively calm periods where I just get the Vidaza and recover pretty fast. After 14, I never recovered. They won’t give a prognosis because they don’t have one. Your mother’s age is not in her favor. Read the post after my other post. I support that point of view 100%. If there is anything else you are questioning, please ask me. Sometimes, might have a trick that might work. It is a bear.

    #30318

    Deborah
    Participant

    Another post for Jane: I have been told and seen that patients can fall into bone marrow failure very rapidly and die very soon after diagnosis and starting treatments. Try to get her to rest and support her nutritionally. Get the help you need from her center: physical, emotional, spiritual,everything. Good thoughts to you and your mother.

    #30443

    Karen Skaat
    Participant

    I am seeking advice for quality of life for my dad , My dad was just diagnosed in June and is 81 years old . His levels were in the 30s in June and dropped to the 20s , by July 15 . They have held steady in the 17-23 range for over 6 weeks now. He was suppose to start treatments and has been delayed due to infections the last 2 weeks.
    Most recently pneumonia in the hospital for 8 days . A doctor on his most recent visit made him rethink things treatment asking what would his quality of life be if he were extremely sick the remaining part of his life
    His immune system is weak . Some drs says not to start until your levels are under 10 . He is insulin dependent diabetic , has a pacemaker and Coronary Heart Failure . Any thoughts and opeinions with older patients would be so appreciated . Karen Skaar

    #30452

    whitleywrites1
    Participant

    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.

    #30456

    sarahtaylor
    Participant

    Hi I am Online Dissertation Writing Help provider I want to know MDS how do you deal with a patient and why do a lot of MDS who refuse to vaccinate by self push it on their patients?

    #30558

    LeAnn Duke
    Participant

    LeAnn here!! We chose to go to MD Anderson to see what their treatments for MDS were. When we got there they did the typical blood work and a bone marrow biopsy and then after the team of Dr’s reviewed the results they offered to put me on a research study using either Vidaza or Dacogen. As my info was put into the computer I was chosen to start on Dacogen. I started the infusions in May. The research study was for 6 months and instead of taking infusions for 5-7 days once a month, I take 3 day infusions that last an hour each. I have finished the 5th cycle with no side effects at all. No nausea or vomiting and although I started out using Zofran to prevent nausea, I found that I didn’t need it at all. I have not noticed any benefit yet. I have been transfusion dependent from the start and since starting the infusions I have had more frequent transfusions. I have also had to have platelets since I started the infusions where I didn’t have them before the treatments started. I was told also that with Dacogen that I should notice some improvements in 4-5 months. So far there have been none that I can see. My hemoglobin still drops throughout the month and I have 2 units of blood every two to three weeks. My type has changed from RARS low risk to RCMD intermediate 1 stage. As of the last bone marrow biopsy my blasts were still very low at only 6%. I think the plan will be to try the Dacogen to see if it will hold things where they are. My questions is that if I am needing more and more blood transfusions and even occasional platelets then is the Dacogen really helping things.

    I have two oncologist and one says keep doing what we’re doing and wait and see. The other one says that he doesn’t see that that the Dacogen is working and thinks it might be time to talk to the transplant Dr. Any opinions?

    #30565

    JBC
    Participant

    My husband responded well to Vidaza for four and a half years!! Looks like the end of the road, but we are most grateful for the time it bought. Best wishes to all.

    #30839

    Pooja Yakshi
    Participant

    Hello I am Online Dissertation Writing service Help provider. In MDS how do you deal with the patients?

    #31084

    EVERETT VAN HOESEN
    Participant

    I have been on completed two cycles on Vidaza. An initial BMB in July revealed that I had MDS. Subsequently, in August a second revealed that I had AML. My platelets were at 41. My treatments have gone exceedingly well. I had a port installed so that I am not dealing with any of the bruising or difficulties mentioned by others above. I am on a very strong dose 150 each time. Initially they gave me anti nausea injection as a part of the treatment, but now it is only given at the first treatment not the subsequent six. Two of the 7 treatments include infusion of a steroid. It makes me feel great and stops my back pain hand pain in the legs. I have been living a pretty normal life including getting in 9 holes of golf weekly and playing bridge 3 times a week. After my first BMB done by doctor Daniel Morris had Florida Cancer Center Naples Florida I was fortunate to be able to book a visit to MD Anderson in Houston. There I met with Dr. Versetovsek better known as Dr. “V”. He is recognized as the world’s foremost expert on all forms of Leukemia and heads-up that department at MOORINGS Anderson. When my diagnosis advanced from MDS to AML he together with Dr. Morris decided upon the Vidasa treatment. The only problem I have had with the treatment is that it has caused severe bouts of constipation. So far, I have not had a good solution. It even resulted in a 2 night stay in the hospital to have a bowel blockage cleared. We are still working on the best diet and drugs to take care of the problem. If any of you have suggestions I would welcome them. Another suggestion for all of you is that a papaya smoothie does an incredibly good job of help keeping up the platelets. Read about it on the internet. I make a smoothie using a hole papaya, one banana, and mixed fruit in a blender. Take It 2 or 3 times a day. My HEM has been impressed with the result. Finally, my HEM has one patient in remission and another that has been taking the drug for more than 2 years.

    #31085

    EVERETT VAN HOESEN
    Participant

    My experience using a port has been so positive that I find it difficult to understand why any hematologist would not recommend it for every patient taking by Vidaza. They insert a needle on Mondays and leave it in place through Saturday and then have to reinsert it on Monday. All of my blood tests are taken through my port. If you do not have a port please look into it.

    #31488

    carl engel
    Participant

    Well; here I am looking at my 11th cycle with Vidaza. Since the beginning of 2016 I’ve seemed to respond to the treatment, but now we seem to be at an impass with my levels of Hemagloben and platlets. So now another look at the bone marrow. Let’s see what tommoow brings. CE

    #31489

    carl engel
    Participant

    Sorry for the spelling. CE

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