mds and vidaza new treatment

[Nick]

I have been on Vidaza for 6 months now. Seven days of injections every 28 days. This is divided into two as too much in one injection so I have one in each arm or leg or tummy. Since it is in the fatty tissue just below skin surface none is too painful. I am however rather thin so nurses are amused by not being able to find any fat on me!
My weight dropped from 8stone 12lbs to 8 stone 3lbs but I have recently been able to get it back up to 8st 8lbs.
The nurses always ask where I would like the injection - arms, legs, tummy or backside. I used to go from arms to legs and back as I did not fancy it in the tummy or backside. The legs injections are not painfull but the after effects not good - I found walking v. painful and my balance became a bit wobbly.
I now go for arms and tummy (I have needed to inject myself with GCSF to stimulate Neutrophils as count has been down to 0.1 recently and after an initial need for a whisky before injection can now do it straight off - but still hate the point of the needle going in - I keep telling myself that it's either doing it myself or waiting for 2 hours in the hospital for someone else to do it). To get to the point tummy injections are ok as it does not interfere with my sleeping position. With a low platelet level (5.0 this week so needed 2 x platlet bags) my tummy looks like a series of red and black mole hills - but who cares it does not hurt to much.
Oh and if you have hairy arms (men that is!) I suggest shaving the lower part of your arm (i.e. wrist) so when the plasters are taken off after a platelet trans it does not painfully rip the hairs of your wrist.
I have virtually no side effects from Vidaza - constipation and really bad stomach pains at first but now under control with Senna and Lactulose.
Hope this helps someone. Please ask questions if I can help.

[ann]

Hello crpa, welcome to the forum. It has been a blessing to me and I hope that you will be blessed also. My husband, Henry, was diagnosed on June 30, 2009 with MDS. Our lives changed. He has had 8 Vidaza treatments. The first was a series of 7 days but since then it has been 5 days. We are on a 28 day cycle. He goes in this morning for his next treatment. He is doing very well. He was admitted to the hospital 3/10 for fluid reduction and had 3 units of blood. This is the first transfusion since Sept. '09. Before he started his chemo treatments he was in the hospital and it was decided to put in a port. He receives his Vidaza through this port. He also receives his transfusions there. It has been a blessing. He hates needles and this makes it a little better. You and your husband are in our prayers. God bless.

Hello roger! I had been wondering how you were doing. You are on the same schedule that my husband is but he is a couple of months ahead of you. I hope that you are doing well. Think of you each time I log on. Glad to hear from you. God's blessings.
ann

[bun]

I hope for good results for everyone. My husband (age 48) has been on Vidaza treatments for 13 cycles. He receives 7 days of 2 shots per day (75mg each). He rotates the shots from arm left, arm right, leg left, leg right, stomach left side, stomach right side, then 1 shot in each arm on 7th day. Injection site soreness (like sunburn) from 1 day after treatment lasting 3-5 days each + some general achiness & tiredness during chemo week, and short term mild nausea are the Vidaza side effects he has. He sees a local hematologist in Minneapolis, MN and one at Mayo Clinic in Rochester, MN. Both consider his MDS in remission - Currently his blood counts are almost normal (only platelets are slighly low). Both hematologists suggest staying with Vidaza for time being. Eventually he will have a stem cell transplant & has 3 sibling matches. (We feel blessed by this).

He considers the Vidaza side effects minor compared to his lessened quality of life before Vidaza. His MDS also causes an autoimmune response - fevers, vasculitis, & arthritis like symptoms - in addition to low blood counts for red, white & platelets (sometimes just 2 of the 3 would be low). Prior to Vidaza, his autoimmune problems received a partial response with 12.5 - 15 mg / day of prednisone + 25 mg once a week methotrexate. The fevers & aches never were eliminated. It's a much different (& better) story once the Vidaza started to work. The methotrexate was stopped when Vidaza started ... & once the blood counts finally improved we were able to very slowly step down with prednisone. That was a huge accomplishment ... he'd been on it for almost 3 years.

Be patient with Vidaza - give it a few cycles before giving up.

[mausmish]

My doctor believes the 5 consecutive day treatment/28 day cycle is as good as the 7. I've responded extremely well but have only done 3 cycles. I don't know if there's a long term difference. Also, this drug appears to act very differently with each individual so it's difficult to predict. My Vidaza has been administered subcutaneously, 2 injections each day in my rather large stomach. Finally, I have found an instance where belly fat is advantageous! I started seeing positive results in the first cycle and amazing results after two. I just finished my third last week.

Good luck!

[ann]

I'm curious about the shots of Vidaza. What doses are given that way? How long does it take? My husband's oncologist had a "port" put into my husband's chest just below the collar bone on his right side. He receives his treatments in this port. They inject an anti-nausua drug into the line before he gets the Vidaza and then after that is finished, they give him something else in the port. He just completed his 10 treatment Friday. Seems to be doing well. Had not had a transfusion since Oct. but had to have 3 units first week of March. We are praying that this treatment keeps doing well.

[mausmish]

Originally Posted by ann

I'm curious about the shots of Vidaza. What doses are given that way? How long does it take? My husband's oncologist had a "port" put into my husband's chest just below the collar bone on his right side. He receives his treatments in this port. They inject an anti-nausua drug into the line before he gets the Vidaza and then after that is finished, they give him something else in the port. He just completed his 10 treatment Friday. Seems to be doing well. Had not had a transfusion since Oct. but had to have 3 units first week of March. We are praying that this treatment keeps doing well.

I get two injections subcutaneiously into my stomach each day for 5 consecutive days. I believe each injection is 75 mg/m**2. I take my antinausea med (Zofran/ondansetron) orally, one tablet 30 minutes before each treatment.

[crpa]

Thanks everyone for your replies.
My husband had to stop the Vidaza treatment unfortunately due to side effects that were affecting his liver.
Too bad because we had heard so much good things.
But we are now IN Pittsburgh were he has started a 7day induction chemo due to a higher blast count.
We are remaining hopeful and trying to take it day by day and hope for a remission.
Happy Easter and Spring to all.
crpa