Cycle 6 complete-BMB next. Asking for prayer

[roger]

I start my 6th cycle tomorrow to be followed with my second BM biopsy. Doc says if good news I will continue with Vidaza. If not....?

So what is usually next if results are less than wonderful? Would he change the dosage, leave it as is, cut me off completely, go to transfusions????

I have tolerated Vidaza relatively well but am more than curious what i can look forward to. I know I will not die in the immediate future but what is life going to be like if he cuts me off?

I'd like to hear from some veterans that have lived with MDS for a good number of years. I pray your journey with MDS has been encouraging, and all meds are working to your benefit.

God bless us all

[Chirley]

Hi Roger,

I'm probably not the best person to answer this but, I think my haematologist said that if or when I decide to try the 6 cycles of Vidaza and it doesn't work then it would be time for BMT.

This doesn't mean it is the usual protocol because I have learnt that there is no "usual" with this disease. I think it depends on a lot of factors including transfusion tolerence, blast %, risk of transformation etc.

Good luck with your results. Please post them when you get them, they will help with the decisions I have to make as well.

Keeping my fingers crossed for you.

[mausmish]

I'm in my 4th cycle of Vidaza and doing well. My doctors say I might try Dacogen if the Vidaza fails or becomes intolerable in the future. However, they are encouraging me to try for a bone marrow transplant while I'm doing well instead of waiting until I'm in crisis. Best of luck to you with your treatments.

[ann]

My husband is getting ready for his 10th round of Vidaza. He is doing very well this week. Energy is up and hasn't needed his oxygen all the time. We just keep thanking the Lord for his progress and for the doctors and nurses that are so kind and considerate during his treatments. He will keep taking the Vidaza until it no longer works. We hope that is a long time away. God bless each of you who are undergoing treatment.
Good to hear from you roger. God bless you, you will be in our prayers.
ann

[launch]

My husband, Ron begins his Vidaza Cycle #14 next Wednesday. He's doing great! We also thank God for Ron's health and continued response to Vidaza. I pray you continue to do well in your treatments too! My husband's blood counts, progress, etc. is posted under clinical trials e1905. I plan to update his progress within the next few weeks. His blood counts look good. We worry sometimes when his WBCs bounce. But, the doctors said not to worry until they drop below 1.5 (1500). They said, be happy anything above that. They've not dropped below 2.0 (2000) since 6 mons ago I believe, but, they're right at 2.0 and 2.1 right now... we're praying they come up a bit more.... but, still remain positive that he's feeling good and his neutriphils are at 36%. Last week they were 45%.

Cindy

[roger]

Sorry to take so long to get bck but I just arrived home last week from horrible 4 weeks in the hospital. Conclude round ^ and a ew days later my wife rushed me to


ER becuse I had the dreded temperature and it ws rising fast. I was immediately admitted. What was found was two injetion sites h blistered, prts were white and seen ad very unusual. After taking some cultures it was determine that they would have to surgecly remove a shark size bit4e out of my left side and a wee little one under my right arm.

They think the culprite was the little known nor cared about, Erythema Nodosum They are litte reddish bumps tht appear without warning, for me at my ankles an just under my knees.

Docs think the second combined with the Vadaza caused all the damage.

I'm now back home about a week and restting.
Goi8ng to see Onc next week and after my BMB it will be determined what the next step, if any will be. My primary doc has been talking to me alot about "qulity of life vs quantity of life" and I suspect he may know more than he's telling me.

It was Vadaza by injections that i was doing. Anyone know if Vdaz can be given by IV or pickline? If I have to switch to the other drug whick begins with a D, can someo9nt tell me what are the usual side effcts for that.

I've got some big decisions to9 make for myself next week so I'd appreiate some feedback.

I continuing pray for us all. We are as we have always been in God's hands and will live according to His plan.

[Chirley]

Hi Roger,

Yep, I'm having IV Vidaza, only on my first cycle but it seems very easy. I do have a port though and I have been sent home every day with the needle still in so that I don't have to have so many needles.


Best of luck with your bone marrow and sorry to hear about your hospital stay.

[mausmish]

Roger - so sorry to hear about your time in the hospital. Do the doctors think the Erythema Nodosum was a reaction to the Vidaza or did you have it already before you started the Vidaza? I hope you are able to tolerate the IV better. The other drug, Dacogen, is also given via IV. Best of luck to you!
Karen

[mmandm]

Company is Onconova. Drug is called Estybon. It looks promising and may take the place of Vidaza if it is more effective.

If you fail the Vidaza or Dacogen, then see about getting into a clinical study of this drug. Perhaps it will work. The Lymphoma/Leukemia Society just funded $10 million to get multicenter studies going. I know that it is being studied at St. Vincent in NYC, Stanford in Palo Alto, California, and Moffitt Cancer Center in Tampa FL.

I have had 7 cycles of Vidaza. My docs want me to have a BMT, which is already planned, but I am asking my doc if this new drug can be used instead of BMT if I continue on Vidaza until MDS relapses.

Has anyone been on Vidaza and doing well for more than 24 months?

[Neil Cuadra]

Originally Posted by mmandm

Company is Onconova. Drug is called Estybon. It looks promising and may take the place of Vidaza if it is more effective.

There's a forum thread about Estybon here. You might post what you know about it there.

[roger]

Originally Posted by mausmish

Roger - so sorry to hear about your time in the hospital. Do the doctors think the Erythema Nodosum was a reaction to the Vidaza or did you have it already before you started the Vidaza? I hope you are able to tolerate the IV better. The other drug, Dacogen, is also given via IV. Best of luck to you!
Karen

Docs think the Erythema Nodosum was most definitely a reaction of the Vidaza. Checking info on EN it indicated it is often seen with patients that have had Lyphoma/Liekemia

If you see stange little bumps appearing under your knees or anyplace on your legs and they shortly become larger, sore and red tell your Onch as more than likely you have them. Check appearaces on goodle.

Seeing my Onch this morning. I'll let you what's on my future.

Prayers appreciated.

[mausmish]

Roger, how are you? I've been sending you positive, healing thoughts and wondering how the visitvwith your oncologist went.

[roger]

I am now officially post Vadaza. That apparently did cause the EN. Had my BMB after 6 cycles of Vadaza. Monday I shall start Decagen Chemo and hope I don't get the same rection as Vadaza gave me. Now if you don't mind some quesions.

1. This was my 5th BMB and all previous ones went well. This time 4 days later I am hurtin for certain at the BMB site. Called Onc and he said if it not red, inflammed or I have a fever not to worry about. Sure its not his hip! Anyone have similar effects and how long did it take for the pain to settle down?

2. This will be my first time with Decagen. Should I expect the side effects to be similar to that of Vadaza? Constipation is not my freind. Aside from Milk of Magnesia and Fleets perioodically anyone have a special way of handling this?

Wish me luck as i do all of you

[launch]

I believe Fleet's are way too strong for the body. From one extreme to the other... (That's even what my Husband's Family Doctor said).

During Vidaza treatment, my husband, Ron, drank prune juice regularly due to constipation and he would have to take "Senna" and "Sorbital" (Stool softener and laxative as needed). We later discovered Bran Muffins were very helpful to Ron. So, I would make a bunch of banana bran muffins right before chemo week and would freeze some up to stay fresh... he would eat them daily... Here's the recipe if anyone is interested:

Banana Bran Muffins

1 1/3 c. flour (* I use whole wheat )
2 ½ tsp baking powder
¼ tsp salt
1 ¼ c. mashed ripe banana
2/3 c. packed brown sugar (*I use Dark Brown)
1/3 c. orange juice
1 egg, beaten
1/3 c. oil *(I use Canola Oil)
2 cups Bran Flakes * (I use Raisin Bran Cereal)
½ cup chopped nuts (any kind is good.. I personally like Pecans).

Mix Flour, baking powder and salt. Add banana, sugar, orange juice, egg, and oil. Stire until flour is moistened. Mix in cereal and nuts. Bake in greased muffin pan for 25-30 min; until tester comes out clean (Bake at 350 degrees). Makes 12 Muffins.

[ann]

I am so sorry that the Vidaza didn't work for you. So far so good for my husband. He is having problems with this congestive heart and lung problems. His pulmonary doctor drew 2 liters of fluid from his right lung yesterday and he felt wonderful today. Never will be off the oxygen again but that is a small price to pay.
As for the constipation Miralax works wonders for my husband. One capful in a juice glass of apple juice every morning. We have used Wal-mart's brand but keep getting coupons for the real thing. I hope that this will help you.
Keep us informed as to how the new treatment goes. You have been on my mind and it was good to hear from you. Keeping you in our prayers. God bless.
ann