Vidaza questions.......help!

[bailie]

Dick, those are surprising numbers. My WBCs have always corresponded to my neutrophils in movement. Your numbers appear fine from my perspective (remember, I am a patient and not a doctor) to keep the Vidaza at normal levels. There must be something else (or not) going on that has alarmed the doctor.

[Dick S]

Originally Posted by bailie

Dick, those are surprising numbers. My WBCs have always corresponded to my neutrophils in movement. Your numbers appear fine from my perspective (remember, I am a patient and not a doctor) to keep the Vidaza at normal levels. There must be something else (or not) going on that has alarmed the doctor.

Remember my whites dropped from 7.7 to 4.1 and the Absolute Neutrophils went down to 1.1. They were afraid of Neutropenia I think.
You are probably right though , but after being on Darbepoetin shots bi-monthly for almost 11 months with no single bit of improvement and them theses also started to show up Anisocytosis, Poikilosytosis, Marcocytes, Microcytes, Ovalocyes, Teardrops, Polychromasia, Target Cells. In another words all the reds look like crap. That's all I know and that they (World whatever) changed the definition of CMML last May 2016. Maybe my Doc is overcautious or something, I don't know, but I am still fatigued and run down all the time. I just want better.

[Owen M]

Dick S and Bailie I have been following your discussion which has been very meaningful for me. My history is that 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 sat on a Provincial (State) Board 2 days a week. 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 past Sunday..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 on my last day of injection 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. Dick, last year, until the season ended in October I golfed 3 days a week. I went to the driving range a couple of weeks ago and lasted a half hour before I tired out. How long after starting Vidaza were you able to get back on the golf course? To both of you; I continue to be quite sore on my stomach where the needles were given. Is this normal? Any suggestion you may have would be appreciated.

[bailie]

Owen M., welcome to the forum. It's extremely important that the nurses vigorously roll the Vidaza vertically and horizontally right up until the time of injection. Otherwise, the Vidaza will crystalize inside the syringe. The injection sites generally stay sore for 3-4 days after getting the shots. I started my first round of Vidaza in December, and by the time the golf season started in April, I had no problems and I golfed right up until the week before transplant (many times playing the same day I had injections). During that time I was walking the 6 mile course.

[Dick S]

Owen M, your comments are most helpful and thanks Bailie. Actually, I have given up golf completely, I just don't have the strength any more to finish even nine holes.
On my last cycle, I had on injection site that got very irritated and actually "balled up" about the size of a grape under the skin and took nearly a week for the soreness and the ball to dissipate, other than that, little or no problem. So far my "counts" don't seem to be improving yet and I am not so certain that the Vidaza is going to work for me, time will tell as I remain optimistic.

[Owen M]

I completed my second cycle of Vidaza on May 21. I was fortunate as I was transferred to the Regional Cancer Centre at my local hospital., which is a 15 minute drive from my home. The only drawback is that the Cancer Centre is closed on the weekend so I have to drive an hour in and an hour back to The Tom Baker Cancer Hospital in Calgary on Sat and Sun. My first day at my home centre all of the nurses came to me and introduced themselves. They were all so supportive and to a person stressed that while Iwas with them I was the most important person in their life. I was amazed how busy they were and found out later that in addition to the large area they serviced south of Calgary a number of people from Calgary were coming here because of the new facilities and being able to get better times for treatment. Monday to Friday flew by and without exception the needles went in and out almost without feeling. After the Fri treatment Nancy the Clinic Clerk came to me with my times for Cycle 3. Four of the times were the same but one time was 15 minutes later. She apologized twice for this saying that they try to keep the times the same,because the patients have bigger concerns on their mind. Saturday I made my first visit to Tom Baker Hospital. It is part of a huge Medical Complex that includes the University of Calgary School of Medicine. Parking is a problem but I learned that the Royal Canadian Legion where i am a member had free parking passes and stalls for Vets. Thank goodness as parking was a problem. The Chemo area was huge and filled to capacity. The nurses were certainly friendly but there was no extra time available for chit chat. Needles went in and out smoothly. I find that I am quite sore at some of the places where the injections were given(2 each time). Also at these spots there is a lump that forms under the skin. It has now been over a week since my last injections and there is one spot that is still very sore. The other spots have have greatly improved. I continue to inject myself with Eprex onceca week to increase RBC and this has kept the Hgl up around 116 even after the first cycle of Vidaza. Otherwise the first CBC showed most areas had fallen. My Oncologist was not overly concerned and we will see what happens after the second cycle. I get my blood taken this Thursday and have my Oncologist appointment the following Tuesday. Personally my main complaint is a lack of stamina. Yesterday and today my wife and myself were getting our home ready outside for summer. I have a hard time accepting I am unable to do long term physical tasks I did in the past and was wiped out when we were finished. I have not had a blood transfusion as yet and my Oncologist is one who believes in putting his patients on Vidaza before they become dependant on Blood transfusions. I believe that I have come through this second cycle in better physical shape than the first. Hopefully the results of my CBC will prove me right. Like a number of you I am facing my situation as a challenge. I am not as badly off as many who post on this Board and who are doing their best not to let this disease beat them without a fight. You folks are my heros and I can only hope that over time I can show the same courage that you display

May God Bless Us All

[bailie]

Owen, your experience sounds typical. I would feel the Vidaza effects until about Wednesday-Thursday of the week following injections.

It is not unusual to get a lump now and then from an injection. It will go away in time.

I never had a transfusion during my 24 cycles of Vidaza so that might not be unusual.

Consistently, my platelets would drop to nadir at days 10-14 following injections and the WBCs and neutrophils would reach nadir at about days 18-21.

[Owen M]

Am now in my 3rd day of Cycle 3 receiving Vidaza. Went for my Oncologist visit last Tuesday and also got my CBC report, which was a bit encouraging. HEM was 117 vs 109 after first cycle. RBC 3.0 vs 2.9. Platelet 88 vs 79 and NEUT 0.7 vs 0.3. Only concern for me was before Vidaza my Platlets had been as high as 138 down to 114 . My Oncologist was not worried and said after 3rd or 4th cycle the count should come up for good. Is his words " He is cautiously optimistic" regarding the Vidaza treatment. I will complete 6 cycles and will then have a Bone Marrow done to see where we stand. for the info of Bailie I have now played 2 rounds of golf riding in my cart . The first 9 holes and last Friday 18 holes with my usual group of 12. Even managed to win a couple of holes and best of all while I was tired at the end I was not wiped out. I have always tried to look ahead and in anticipation of Vidaza finally coming to the end of it's Shelf Life for me if I am put on it permanently I have been interested in articles I read the other day from the Associated Press - and also one from the Edward P Evans Foundation particularly as they relates to the treatment of various blood diseases. Links Below:
http://hosted.ap.org/dynamic/stories...MPLATE=DEFAULT

http://evansmds.org/jordan-craig-t-ph-d-2016/

While my age of 78 may work against me in being considered for such treatment when Vidaza runs its course my hope is that this could be a major breakthrough for so many others with MDS

[Thomas Hawkinson]

I am a 69 year old male diagnosed with MDS/Leukemia in September of 2013. The BMB revealed Intermediate 1. After three Oncologist consults, I chose a wait and see strategy with follow up BMBs.

December, 2016 the BMB showed an increase of blasts from 5 to 11. The oncologist at Moffitt placed me at high risk. The treatment they prescribed was four cycles of Vidaza.

I chose to have a port placed in my upper chest for the administration of the chemo and blood testing. It was a good move on my part!

I am a Vietnam vet exposed to Agent Orange and chose to receive the chemo at the VA. Their chemo center is closed weekends, so, to fulfill the treatments it was set up M - F, then Monday and Tuesday the following week. Then with 21 days off. Moffitt was fine with the schedule, and I completed four cycles finishing the first week in June.

I am scheduled for my fourth BMB this Friday, the 23rd. This will determine future options.

There are many other details, but I'd rather not write a book, although I am an author! If you have questions, I'll try to answer.

[bailie]

Once you get a stem cell transplant you should be eligible for 100 percent disability.