Started Vidaza Today

[Darice]

My husband started his first round of Vidaza today. I wasn't expecting two shots . . . but otherwise I think it went as expected. We had to do labs again first because he had been having problems over the weekend. So I guess it's the same routine every day this week (MTWTF) and then again Monday and Tuesday of next week. Labs every Thursday . . . and other times as needed. We'll be watching blood counts closely. Start all over again 4 weeks from today. Doctor's visit mid-way. OK, we can do this.

I know we start subcutaneously because side effects are lesser than with IV, and they will move the injection location around to minimize skin reaction. I think I read somewhere (here?) that evening primrose oil can help with that, so I asked our chemo nurse. She knew of this also and told me to cover an area about 4 inches square around the injection site. Hope that helps.

I know nausea is a likely reaction, so we got a prescription for that . . . and my husband is, indeed, experiencing the nausea. I don't think he has thrown up yet, but he is pretty miserable.

He says that he just hurts all over. He had a pretty rough day yesterday and fell five times . . . so that may be the cause of the hurt/ache. Has anyone else experienced the body aches?

I read (I think here?) that Vidaza can cause a drop in the blood sugar . . . he diabetic, so I'm watching for that. He hasn't felt like eating, so I haven't given him any insulin.

I think we've got things under control. Well, maybe not really under control . . . but we know what's going on and are coping.

Anything else I should be alert for? Any further advice? Sure hope this works!

Thanks

[slip up 2]

Darice...my husband just finished last week his 1st set of Vidaza....the evening primrose worked well, we have used about 4 a day of the oil, he has had a small bit of skin pealing, like a sunburn....we took the caps with us and started as soon as the needles are out.....
So far he has had 2 blood transfusions and 1 platelet, and will have more on Wed....it really lowers the counts fast...for him anyway....
He is 7q as well....we are having blood work done 3x per week....I understand that this drug is a " wild ride "....
He is also taking pms Ondansetron ...8 hours apart the days of the needles....for nausea....
If you have any other info lets us know....
take care

[Darice]

Thanks so much for responding, Slip Up 2. It is so difficult to find good information about all of this. We have good doctors and support there, and I'm reading as much as I can get my hands on . . . but it is great to be able to talk to someone who is experiencing the same things.

Last night was rough. In addition to my husband being miserable, I am preparing for a colonoscopy this morning, so we neither one got much sleep. His temp got up to 101.3 (38.5) and he's hurting. Just gave him some Tylenol to get the temp back down. Sure hope today goes better . . . we're due in for the Vidaza at 2:00.

How long have you been dealing with the MDS? Is your husband de novo or secondary? What else are you dealing with? I look forward to talking with you more, but I've gotta run now.

Thanks again,

Darice

[freedom99]

Hi Darice;
Sounds like you have things under control with Jens.
My wife had the same subcutaneous injections which usually involved 2 injections each time. My wife said that it felt like it was burning when it was injected. We didn't know of the Primrose oil at the time but is sounds great and you have it available to use right after the injection.
Don't be afraid to give medicine for pain. Tylenol sounds ok. Ask the doctor.
My wife had Kytral for nausea which worked well. At first she didn't take it and still didn't get much nausea.
My wife experience very few side effects for three cycles. The platelets did go down from15 to 5 which led to 2 transfusions of platelets per week. The Hgb went down to 75 and required 1 transfusion per week instead of 1 per two weeks.
The doctor did say that some patients gave up after one or two cycles because of nasty side effects but it was important to grim and bear it for as much as possible to get through this nasty stage.
Stay on top of his vitals and if you need anything to keep him comfortable and can't get hold of the oncologist see your GP and he will get you something. I needed to get something for my wife to relieve her of the pains she was getting in her legs and the GP recomended Tylenol Arhritis since we wanted to be careful not to get an anti inflamatory med that would cause bleeding in the stomach becaise her low platelets.
Look at some of the other forums who are going through similar treatment. There are many different situations with similar diagnosis and treatments. It has helped us a lot just to talk about it and get some good leads and suggestions.
All the best to you and Jens.

[slip up 2]

For the injectons, the pharmacist in the chemo clinic, does what they call a sandwich needle, air in the top and the botton of the syringe,so the drug touches the skin as little as possible....also each of the needles are rubbed between the hands for about one minute, to make sure it is mixed....the vidaza is only good for 45 mins after it is mixed by the pharmacist.....

[slip up 2]

Darice...there are articles on Vidaza on "MDS THE BEACON"

[Chirley]

Hi,

I had 5 cycles of Vidaza and I never once had any nausea. My doctor ordered Navaban (Tropisitron) before each infusion (I had IV) and it worked wonderfully. I did get some muscle soreness but it wasn't too bad and subsided by the 2nd or 3rd day of the cycle. Constipation started becoming a problem due to the Navaban and Vidaza together so I added a laxative in every day as well. I did have daily blood tests during the cycle and again mid cycle.

The main side effects were all marrow related. All my counts dropped dramatically and my blood transfusion requirement increased. If I remember correctly I had to have 6 units of blood in the first week of the first cycle and another 3 units the following week and 3 the week after. I had been averaging 1 unit of blood a week prior to the Vidaza.

All in all Vidaza wasn't very difficult at all. Because I had IV Vidaza with blood transfusions as well it was time consuming which was tiring but that was a small price to pay for a potentially life prolonging treatment.

Hope things improve.

Regards

[slip up 2]

Chirley
thank you so very much for posting this....

[Darice]

We've gotten through the first three days of Vidaza; number four today. I don't know whether I will be able to get him it today or not. He is determined to make it, but so far has been unable to get out of bed. I told him to rest because we still have a little time before we have to leave.
He started all of this pretty worn down already from a bout with bladder cancer, and just hasn't had a chance to get his feet under him. He is totally exhausted and weak. The nausea was better this last time, and the evening primrose oil is helping with the injection site . . . but he is weak and hurting. We're supposed to get CBCs today and I'm pretty sure he'll need blood . . . he is truly pale as a ghost. And weak as a kitten. Should this get better within this set of seven or will he get progressively worse? If he's this bad after just 3 I can't imagine after 7. How quickly will he recover? couple of days? week? 2 weeks? or is this just the constant state for a while? I know a transfusion will give him a boost, but has anyone found anything else that helps?
Thanks