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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 - 31 through 45 (of 49 total)
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  • #31538

    torrie william
    Participant

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    #31998

    sandra4611
    Participant

    Vidaza is a miracle drug for some, ineffective for some, but the majority get benefits far outweighing any side effects. My husband had 13 rounds of Vidaza and was one of the ones that saw results immediately. His lab results stabilized right away and he did not require any more blood or platelet transfusions for the entire time he was on Vidaza. It can take four to six rounds for any changes to be noticed so that’s the reason why doctors want you to stick with it until you are sure it won’t help you. Vidaza is described as “chemo light” by oncologists because it doesn’t have the kind of side effects you associate with chemo. You won’t lose your hair but some longer time users notice thinning of hair. Anti-nausea drugs are routinely prescribed but many experience no nausea at all. (My husband didn’t.) He didn’t have problems with soreness at the site of the injections although that is the most widely noted “side effect.” He was on a 5 day cycle and had injections in rotating places to decrease the odds of having soreness. (Center stomach, right arm, right stomach, left arm, left stomach) Some people get Vidaza via IV and avoid any chance of localized soreness altogether. My husband had hiccups for a few hours after round one and two but not again. He would usually have one day where he felt tired and once in a while had muscle aches, but as he said, everybody has those once in a while, so who knows if it was because of Vidaza. My best advice is don’t go looking for side effects. If you have a list of them, I’ll bet you get everything on the list! Just relax and let Vidaza stabilize your lab results for as long as it will last. The one thing everyone on Vidaza can say is that it quits sooner or later. There are several ongoing studies trying to figure out why is stops or for some, why it doesn’t work at all.

    #32124

    Owen Maguire
    Participant

    I was diagnosed with MDS during my annual medical in the fall of 2012. ( Funny thing I was diagnosed with A-Fib at the same time). I was 73 years of age and until then I was the picture of health; golfed 5 days a week and went to the gym to work out every second day and did a lot of contract work. I was put on a watch and wait program,, but in a few months had to ride in a golf cart to play as I began to get tired easily. In the fall of 2015 my Hemoglobin took a dive and I was placed on E-Prex 40,000 units once a week which I inject myself. This has had a positive effect and my last count was 117. My white count while not normal was not considered dangerous at the time. Three months ago at my usual appointment with my Hematologist/Oncologist I found that my white count had really fallen and consequently I was placed on the Vidaza program of 7 days on and 21 off. I completed my first 7 days this morning. The Vidaza program at the Peter Lougheed Hospital in Calgary Alberta, Canada is co-ordinated by a Pharmacist attached to the Hematology Department. She has been a lifesaver as she went over the program in depth prior to my starting and is available by phone or email to answer any questions. She also acts as a bridge between myself and my Oncologist to make sure things go smoothly. As many of you will confirm trying to get hold of your Oncologist can be difficult at times. I live in a medium size centre outside of Calgary, and there is a regional Provincial Cancer Center at our hospital. This centre has just recently had a two and a half million dollar up grade and it looks like I will be able to continue my Vidaza treatment here subject to my Oncologist giving the go ahead on my visit in three weeks. So far the only side effects I have experienced have been sourness at the injection sites; relieved by evening primrose oil, some mild constipation relieved by a laxative (The pharmacist has suggested I start the laxative two days before I start my next treatment and lastly yesterday I was extremely tired after the injections. There was a problem with some crystallization of the Vidazda in one of the syringes and a number of attempts took place before the injection was successful. I hope that the program will buy me a few more years of life.

    #32251

    EVERETT VAN HOESEN
    Participant

    This is a test reply

    #32253

    EVERETT VAN HOESEN
    Participant

    I hope I will be able to provide helpful information. In January 2016, after a BMB done by Florida Cancer Specialists, I was diagnosed with Primary Myelofibrosis PMF. At that time my blasts (immature cells) were approximately 3%. I was put on a “watch and wait” routine, because PMF is often chronic and can go on for many, many months, or even years. In July, I arranged an appointment with Dr. Verstovsek at MD Anderson. Dr. “V” is head of Anderson’s leukemia department and considered a top world expert regarding blood cancers. At MDA I had another BMB and it was quite revealing. First, they tested approximately 25 chromosomes vs. twenty at FCS. Consequently, they identified the chromosome causing my problem. They also determined that I had Myelodysplastic Syndrome (MDS). I ws continued on “watch & wait”. At the end of September another BMB was done and the result was bad. My blasts were 28% and my diagnosis was Acute Myeloid Leukemia (AML). Consequently, I began Vidaza treatments on October 3rd at FCS. My treatments consist of seven days infusion Mon>Sat + Mon) followed by 21 days “Gap”. Each infusion starts with Aloxxi, an anti nausea drug. I have never experienced an infusion related nausea episode. On Monday, Wednesday, Friday and Saturday I also receive a 20 minute infusion of Decadron–a steroid. Decadron is VERY BENEFICIAL, because it stifles pain, including long standing lower back pain, and it puts me on a high. Lastly, I receive my Vidaza. Initially, it was infused in 40 minutes, but now it too is infused in 20 minutes. Following my first treatment round I experience some itching on my chest, but that was easily taken care of by topical cream prescribed by the Doctor. In February 2017 I returned to MDA for another BMB. At that time my blasts were down to 9%. I asked Dr. “V”, ‘How do we know if the Vidaza is working?’ His reply, ‘if it was not you would not have been able to come to Houston for this appointment’. I have now completed 9 months of treatments and feel much better than I did at the beginning. I have asked my nurses about their experience with other patients and have been pleased to learn that many, many people have been on Vidaza well beyond the 24 month median prediction. One nurse has been treating a patient who started on trial 70 months ago–almost 6 years (:-). Two other notes. First, I had an infusion “port” installed by a general surgeon. It is used for all blood testing and infusions–I highly recommend it. Second, during my “Gap” weeks I receive an injection of a generic version of Neulasta once each week. The purpose is to stimulate my bone marrow to produce white cells. Usually, within 48 hours after the shot I am a bit wiped out, but I think it is worth it. For those who have low platelet counts (mine went down to 30K), I recommend that you prepare a Papaya smoothie from a fresh papaya, banana and mixed fruit. My platelet counts are typically about 90K. You can google papaya and dengue fever to learn more.

    #33432

    kathleen
    Participant

    Richard Wagner, my husband was given the same time frame in 2007! Vidaza has worked for 7 years, just recently not working any longer. He is entering a clinical trial at Johns Hopkins in preparation for a bone marrow transplant as his blasts have gone up to 17%. Best wishes to you.

    #33658

    Sylvia Davis
    Participant

    My husband (76 yrs old) had 8 rounds of vidaza, 5 days, off 3 weeks. We were prepared for all the awful side effects but he tolerated it quite well, few times diarreah (they will give pills for this), tired at the end of the 5 days, but within days energy back. It’s possible he will have more rounds in the future but we wont dread it. As many, many folks will tell you, EVERY person is different. Stay positive, vidaza has an overall good reputation.

    #33665

    Cecile Huston
    Participant

    I was diagnosed with MDS in April 2017, had 2 bone marrow biopsies, started Vidaza June, I am given anti-nausea meds 30 min. before and I have no problem, the 1st round of Vidaza about did me in with the injections, my 74 yr old body could not handle it, my skin was so stressed so now it is given in the port and no problem, I will get another bone marrow biopsy next week, but so far my numbers are still very low, I know the vidaza is only to give me more time, but I am also getting a clinical trial drug twice a month, and since there are only 39 people on this, and it is pre-trial so not been tested before, we have no idea of what it can do, I decided against even trying for a transplant, no siblings, and my age, it is not worth all that goes along with it. I get sooooo tired easily and short of breath, my MDS is due to chemo in 2000 for breast cancer. thanks for everyones posts.

    #33680

    dj carroll
    Participant

    Diagnosed (dx) in June of this year with MDS high risk. Only 67, 68 in Nov., and this is the result of much chemo for follicular-NHL plus an auto-Stem Cell Transplant in ’09.

    Have had 1 rbc and 2 platelet transfusions and last week was 3rd round of Vidaza. Drug is very easy to cope with, common problems only. Port helps, injections never discussed TH.

    Fellow traveler, dj

    • This reply was modified 11 months, 3 weeks ago by  dj carroll.
    #35712

    EVERETT VAN HOESEN
    Participant

    I see it’s been quite a while since somebody posted on this site. Perhaps this will help those were curious about how Vidaza works. I am just beginning my 18th month of treatments. I have been quite accustomed to receiving the treatments and do well. I received Decadron steroids 4 times during each one week cycle. Hopefully, I will go on for at least another year. For me Vidaza certainly has been a lifesaver and I hope it will be for all of you who will be needing it.

    #35757

    Kenneth Alexander
    Participant

    Thank you for posting Everett. I am 70 and I have MDS and have just completed my 15th cycle of Vidaza 7days on and 21 off.I am also accustomed to the treatments and feel okay. I am treated locally in Utica by Dr. Butalla where I receive the Vidaza and whatever else.My treatment is coordinated with Dr. Elizabeth Griffith in Roswell Cancer Institute in Buffalo. I am being worked up for a bone marrow transplant and will go there this Monday, 2/12/18, for a Physical Therapy evaluation to see if I can withstand the rigors of getting a transplant. I will also see Dr. McCarthy,head of the transplant team, after the PT evaluation. I saw him last December and he said I was too fat and had to lose 25-50 pounds before he would consider doing a transplant.I have been on Atkins for several months and have been going to see a Physical Therapist three times a week since December to increase my core strength and general endurance. His concern Is the potential of Graft-Host Disease and his having to treat me with Prednisone causing me to blow up with fluid. That would be a very bad situation for overweight me. I am fortunate that my sister is a 100% match and has never had a child. So that is in my favor.Getting a transplant would mean having to spend up to 6 weeks in the hospital and an additional 58 days equaling 100, living within 35 minutes of the hospital. The problem is my wife and I have 3 dogs and while living near Buffalo, the hospital would require her to be with me 24/7 as my caregiver.I have no one else. We would have to get the dogs taken care of for approx 2 months.During the first 6 weeks my wife would travel to the hospital on weekends, a one-way 4 hour trip, and we have someone who will stay with the dogs.I saw an interesting statistic. 30-40% of MDS patients convert to AML and the mortality rate during the first 6 months after a transplant is 40%.Apparently, MDS kills us, just not as quickly. Regards to you and your family, Everett. Ken

    #35817

    Barbara Hunter
    Participant

    My husband will start his 5th cycle of Vidaza next week. His numbers improved after cycle 4. Does anyone know if one can take a break from infusions for a month? Or will he always be on the 7 on, 21 off schedule?

    #36410

    diana
    Participant

    I finished my sixth/last cycle early March 2018. I understand that most patients do not stop Vidaza like I did. My latest blood work on May 3 is normal. My doc said i will start Vidaza again when/if symptoms return.

    #36412

    Barbara Hunter
    Participant

    Thanks,Diana, for your response. My husband finished his 6th cycle. His blood work is normal, a huge improvement from when he began. We would like to take a break for a vacation but his doctor discouraged it. Hard to know what to do. Please let me know your progress.

    #36598

    diana
    Participant

    Hi Barbara,
    Did you take the vacation?
    Hope everyone is healthy and happy!
    My blood work is normal today. My doc said she will see me in six months. I will have blood work done monthly. My last Vidaza injection was March 9, 2018. Dr Liang said Vidaza will work again if my number is bad. Dr Liang also said one patient was in remission for 2 years, and Vidaza worked when MDS returned.

Viewing 15 posts - 31 through 45 (of 49 total)

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