Vidaza questions.......help!

[Dick S]

I feel like the Prodigal Son, it's been a couple years since I last posted.
Anyhoo, in the mean time I have had a couple bone marrow biopsy etc and the doctors eventually put me on Darbepoetin Alfa (think bone marrow booster) injections last April mainly because my HGB was down in the high 7's. Well that sorta worked for a while and then it didn't so they increased the dosage by 50%, now that too is no longer working and the HGB continues to drop back in the 7 range. This is the short version.
Anyhow the Doc agreed to try one more 8 week version of the above and then said he would have to put me on Vidaza. It would be 7 days on Vidaza and three weeks off then repeat the process two more times for a total of over the three months as I think I understood him.

Forgive me, but I have forgotten most of what I have read here about Vidaza. Is it an IV or a shot? What are the side affects? What else am I looking at going this route? Thanks in advance can you help me and thanks for still being here for me.

[bailie]

Dick, several of us have experience with Vidaza. I just finished my 24th cycle of Vidaza. I get my two Sub-Q shots in the stomach each day for seven days and then a 28 day break. Most of my cycles have been as you describe with a 21 day break. The stomach shots seem to work better than any other area according to my nurses who have also given them under the upper arm. I prefer the shots because I am in and out in about 15-20 minutes. The IV is optional but they take much longer. I take an anti-nausea pill about 1 hour before the shots. I also have learned to take MiraLax while getting the shots because the anti-nausea pills will cause constipation.

I don't have much for side effects and have often have gone golfing the same day as getting the shots. I will start my cycles on a Monday and start feeling sluggish by Wednesday or Thursday. This will last until about Wednesday following the last shots on Sunday.

I wish you the best and welcome to the Vidaza club. Vidaza saved/extended my life.

[Dick S]

Thanks so much Bailie for the reply.
Is it possible for these shots to be done at home, by me/wife like I do now with the refrigerated Darbepoetin shots? Or must a nurse provide this? Reason being, I have 4 hour round trip to the hospital and the local clinic refuses to do them here.

[bailie]

Dick, I really doubt (impossible) to have these shots at home. I wondered the same thing. The person mixing the two part Vidaza "gowns up" when mixing. At one location that I use the person giving the shots also "gowns up". They don't start mixing the Vidaza until they see me because of the cost of the material. A nurse gives the shots. I have a niece (who is a nurse) who is readily available to give the shots and there was no consideration to let that happen.

I started out getting the shots about 1 1/2 hrs. from home. Then our local (small) cancer center said they could do them. It makes a huge difference in the time commitment. If I were you I would really work hard to find some facility closer to home that might give the shots.

[Dick S]

Bailie, again, thanks so much
I wasn't aware of the complexity of these shots.
I probably should have stated, my problem is I am dealing with the VA. Excellent care, so far BTW.

I heard these shots are really expensive, true?

[bailie]

Dick, the shots are very expensive. They cost my insurance about $11,000 per week when done at my local clinic and $18,000 when given at the hospital that is 1 1/2 hours away.

I am considered 100 percent disabled by the VA because of Vietnam/agent orange/stem cell transplant/leukemia. I am taking all of my treatments outside of the VA system. If I were you I would try to get these shots outside of their system if possible because of the inconvenience for you.

[JordanN]

Hi, Dick!

My dad was treated at a facility that did not offer the shots. Looking at Bailie's account of how much the shots costs, I'm guessing that may have dictated why my dad's medical group chose the IV infusions. They were roughly $6,000 for the seven days of infusion (he was with Kaiser Permanente).

The actual infusion of the Vidaza only took about 10 minutes. The infusion center gave him an anti-nausea medication and an allergy medication about 1/2 prior to doing the infusion. They allowed him to keep his IV in for five days so he didn't have to be poked each time. So, it really only took him about 45 minutes total for the infusions each day. I'm so sorry you have such a long commute to your hospital, but if the closer clinic is willing to do IV infusions then you are not looking at a too long a time in the clinic.

In terms of how my dad felt with Vidaza, he had very few problems. It made him a little more tired, but no problems with feeling sick. His biggest issue was a change in his sense of taste, and until we good find some things that tasted good to him, he had trouble keeping up his weight. For him, Vidaza didn't really work, and eventually he had problems with his numbers falling too low and never recovering and with his kidneys suffering major inflammation problems from even low doses of the medicine. However, I definitely think it is worth a try, since most people seem to tolerate it well and for some it really does make a huge difference.

I wish you much success with your treatment and hope that all goes for you!

[Dick S]

Well, I just consulted with my Onc/Hema and I will starting a 5 day treatment, 3 week off of Vidaza on the 2/27/17 for 3 cycles then reevaluate. If it looks like it is giving improvement, then a second 3 month cycle. Wish me luck, thanks.

[bailie]

I would be interested in knowing why the 5 day cycle and not the 7 day cycle? I'm doing my 25th cycle of Vidaza at this time. I am on Day 6. If you have any questions, be sure to ask. Good luck.

[Dick S]

Originally Posted by bailie

I would be interested in knowing why the 5 day cycle and not the 7 day cycle? I'm doing my 25th cycle of Vidaza at this time. I am on Day 6. If you have any questions, be sure to ask. Good luck.

The Onc Doc prefers the 5 days and the VA Hosp like all hospitals are never open on weekends, so 5 day works better form me. From what I've read it's just as effective as a 7 day. I will find out, but I assume the dosage may be higher and for all I know may be tougher on me.
Bailie, what did you have and what are the worst side affects I will be looking at? Thanks for your help.

[bailie]

I was on the 7 days straight. That is the program that was approved by the FDA. There is a person where I get my shots that has been on the five dayschedule for eight years.

For side effects you will notice a reddening of the local area of each of the shots. It will feel like a sunburn, but not too bad. I will get a lethargic feeling by about the fourth day of the shots that lasts a couple of days after the end of the shots. Have some MiraLax on hand and start taking it the first day of the shots to prevent constipation from anti-nausea pills.

Other than that I didn't have side effects and often would go golfing the same day of shots.

[Dick S]

Well thanks to bailie and others I have made it through the first 3 days of injections and other than a couple sore arms and an itchy belly I have survived, fatigue and nausea have not set in....yet. Getting 2 shots of 75mg each, total 150mg. Two more days of this and I get my three weeks of rest and one cycle completed. Thanks all.....Dick S

[bailie]

Dick, I never had a nausea problem ... not even close. I did take anti-nausea pills before each shot. My fatigue was more of a slow down which I could deal with and that was only after my 6th and 7th days. My nurses, from their experience, really discouraged the shots in any other location than the stomach. Their reasoning was that there seemed to be considerably more discomfort with the arm shots. So I'll be interested in your experience.

[Dick S]

Originally Posted by bailie

Dick, I never had a nausea problem ... not even close. I did take anti-nausea pills before each shot. My fatigue was more of a slow down which I could deal with and that was only after my 6th and 7th days. My nurses, from their experience, really discouraged the shots in any other location than the stomach. Their reasoning was that there seemed to be considerably more discomfort with the arm shots. So I'll be interested in your experience.

bailie, done for the fourth day now and still no nausea nor fatigue. They give me some anti-nausea pills to take at home, just in case. You are right, i had the first two in the arm and my right arm still is very tender left is fine, last two days have been in the belly and I am going to take the last one tomorrow the same place. As the nurse pointed out even though I am fairly trim, there is much more fatty/bulby tissue in the belly area than there is in the back of the arm. Thanks and I will be on the lookout after the 6th and 7th days. Dick S

[bailie]

Dick, also it is important to stay organized with the shots in the stomach. I start on the upper right side of the stomach for the first shot and then go back and forth ending up with four shots on the right side and three on the left. There is room if you keep organized.

[Dick S]

Originally Posted by bailie

Dick, also it is important to stay organized with the shots in the stomach. I start on the upper right side of the stomach for the first shot and then go back and forth ending up with four shots on the right side an three on the left. There is room if you keep organized.

What is your dosage with your 7 day routine? I am getting 2 shots of 75mg of Vidaza for a total of 150mg per day. Dick

[bailie]

That is the same dosage I get.

[Dick S]

Originally Posted by bailie

That is the same dosage I get.

Bailie, how long after the shots did you find you needed to keep taking the Miralax or was it an ongoing thing necessary between cycles too? Thanks

[bailie]

Dick, I use the MiraLax only the seven days while taking the anti-nausea pills. Naturally, everyone is different. At first I thought I could take it just 2-3 times during the shots. Then I realized it would be so much better to take it all seven days. One thing that was consistent was that I was fatigued for three days following the end of the shots. I have always ended the shots on Sunday and often went golfing on Wednesday. By Thursday I have always felt fine.

[Dick S]

Originally Posted by bailie

Dick, I use the MiraLax only the seven days while taking the anti-nausea pills. Naturally, everyone is different. At first I thought I could take it just 2-3 times during the shots. Then I realized it would be so much better to take it all seven days. One thing that was consistent was that I was fatigued for three days following the end of the shots. I have always ended the shots on Sunday and often went golfing on Wednesday. By Thursday I have always felt fine.

Thanks bailie. I too found that I was unusually fatigued starting about the fourth day after the last shot. I guess I will learn more when I get into my next cycle and as I go along.

BTW, my new diagnosis after last BMB is progression to CMML Stage 1.

[bailie]

Dick, has the doctor mentioned anything about a stem cell transplant yet? CMML is rare as are most of these diseases. Any problems with your spleen?

Keep track of your blood counts in an organized method. My platelets bottomed out 10-14 days following shots every time. WBCs and neutrophils bottomed at about three weeks after shots.

[Dick S]

Originally Posted by bailie

Dick, has the doctor mentioned anything about a stem cell transplant yet? CMML is rare as are most of these diseases. Any problems with your spleen?

Keep track of your blood counts in an organized method. My platelets bottomed out 10-14 days following shots every time. WBCs and neutrophils bottomed at about three weeks after shots.

SCT is out for me, I am 82 and at that age it is not even open for discussion.

No spleen problems that I am aware of.

I do keep records of all my blood test and keep a file and with the VA doing this, I can go online and check and copy. Problem is I don't get another draw until I start cycle #2 on 3/27, I will compare then. Thanks

[Dick S]

Well folks, I am on my second cycle and today got a bit of a shocker. They reduced Vidaza from 150mg per day down to 67mg. Because it seems my Absolute Neutrophils dropped down to 1.1. Apparently that is not good. Anyone know about this and how concerned should I be? Thanks

[bailie]

Dick, my neutrophils have dropped below that several times. The lowest at 0.25. They reach a low point at about 15-20 days after finishing the previous cycle. The neutrophils have always bounced back between days 20 -28 (I'm on a 7/28 day cycle). Only once have they lowered my dosage of Vidaza and that was because my platelets dropped below 50. I just finished my 28th cycle.

What are your platelets and WBCs doing?

[Dick S]

Originally Posted by bailie

Dick, my neutrophils have dropped below that several times. The lowest at 0.25. They reach a low point at about 15-20 days after finishing the previous cycle. The neutrophils have always bounced back between days 20 -28 (I'm on a 7/28 day cycle). Only once have they lowered my dosage of Vidaza and that was because my platelets dropped below 50. I just finished my 28th cycle.

What are your platelets and WBCs doing?

The whites dropped from a 7.7 down to 4.1, not too bad I guess. The Platelets are still up to wow 526. Crazy numbers huh?