Is Vidaza worth it?

[Pat Lawson]

Dale, He started the trial in November 2018 RAEBII blasts were 11%. He has not needed a transfusion since January. His counts fluctuate in between treatments but his hemoglobin has been staying pretty steady. In May his bone marrow biopsy showed that his blasts were under 3% so they consider that remission but he cannot ever stop treatments. He is 65 years old. We hoped and prayed that it would go into remission thinking he would be able to stop treatments and go on with a somewhat normal life but we learned that he can’t stop treatments and this is his life now. 7 days on Vidaza 14 days on Venetoclax and 2 weeks later start all over again. It’s taking a toll on him, depression takes over and he has a hard time accepting what his life is now. My heart goes out to everyone dealing with this disease and I pray that someday there will be a cure. This trial that he is on is not a cure it is and hopefully will keep giving him more days to live.

[Dale Frank]

Pat,

Thank you for the info. I hear you re: MDS taking over one ‘s life. The reduction to 3% blasts is great. Does he have low WBC count, too? Are they improving? Best wishes to you and everyone fighting MDS.

BTW, Has anyone experienced blistering with Vidaza OTHER than at injection sites? I got blistering on tummy after sub-cut injections there so I had a chest port installed. Now, 3 days into port injections developed leg blisters🤔?

[Dale Frank]

Alma: I think you can get constipation/diarrhea under control with the use of meds. Do you like ginger? Ginger chews help with nausea

[Alma Pancir]

Dear Frank: Unfortunately, after the 3rd injection of Vidasa I woke up the next day with shortness of breath and feeling really out o sorts. Went and received the 4th shot and ended up in the emergency room. I do believe that this is due to a previous condition I had from a few years ago. My left diaphragm was paralyzed and caused this shortness of breath. Truthfully,I don’t think I was a good candidate for the chemo. I spent 5 days in the hospital with respiratory problems and now am on oxygen. Had to cancel the chemo because after the 4 injections my amc was almost zero. Had two booster shots today to raise the white cell count and tomorrow for a stranger injection. Of course both my doctors are extremely disappointed and I should have realized that this diaphragm problem affected this whole operation. Even though I had plication surgery to tie it down, it did its damage to my left lung. So I wish you all God’s blessings as you continue with your protocol.I’ll still keep watching the formum to cheer you on.

[Dale Frank]

Good luck Alma and thank you for your good wishes.

[PATRICK CAMMARANO]

Pat — since his blast are 3 and he is in remission can he be put on REVLIMID a pill which could keep him in remission ? I’ve been on REVLIMID for 13 years and my last BMB was in 2012 and my blast was 2.
In 2004 I was getting two units of blood every 2 weeks . I was put on REVLIMID in 2006 and have had a normal life taken a pill everyday. REVLIMID WILL STOP WORKING IF MY BLAST GO ABOVE 5. Talk to your doctor . It depends on the doctor some doctors go by the book and others are game. I’ve had 5 doctors over the years and they are all different.
I am 81 years old. As of June these are my lab results:
HGB — 13.0
WBC —- 4.4
PLTS.— 152

[Pat Lawson]

Patrick, thank you so much for this information. He starts treatment again on Friday and he has been struggling with head and chest congestion for the past 2 weeks so he has become very depressed. I will ask the doctor about Revlimid. Because he is in a trial they are probably going to go against it. They told him that a stem cell transplant was the only cure for his cancer so we met with the transplant doctor and he decided not to go that route because this trial seemed to be working and he didn’t like the odds they were giving him for an actual cure with a transplant compared to all the risks of other things that could go wrong. But these treatments are taking a toll on him. He is actually receiving 2 different chemo treatments each round. Depending on what his doctor says I wonder if we should go see another doctor. Unfortunately if he decides to try this medicine you’re on he won’t be able to get back in the trial if it doesn’t work but it’s definitely worth investigating because at this point he is losing all interest in life and questions going on with treatments

[Dale Frank]

Patrick, thank you for the info and glad you are doing well. Did you ever have low WBC before taking REVLIMID. Also, what was/is your diagnosis

Thanks.

[PATRICK CAMMARANO]

Pat — I’ve been living with mds for many years. Read a lot of medical books and are still reading.
Right now you have two illness. Mds which his bone marrow is failing. And cancer of the blood. He is in reemission on the blood cancer. The question I would have is the chemo going to damage a fragile bone marrow? I don’t no if your love one could handle REVLIMID. Revlimid is listed as a chemo drug but it is not. It was listed as a chemo drug for reimbursement reason? For many years it was not listed as a chemo drug. Their is no drug that will kick start your bone marrow not yet . 70% of us will not come down cancer. So what do we do? If we need transfusion we get transfusions. I met a man and his wife at a MDS forum in NJ. The man was living with MDS for 17 years and had 350 transfusion to date. I did not ask him about iron over load .Because he had to be on the pump or the iron over load would have killed him. This man didn’t give up he learn to live with it. It’s a mind thing as well ” their are 31 days in a month so if I lose two days a month getting transfusions and I can live a almost normal life the rest of the month what is two days ” That quote was from someone who had MDS I new and live 15 minutes from my home that was not me every drop of blood flowing into my veins drove me crazy. Two units of blood flowing into my veins for a total of 6 hours. He had a different mind set. I needed someone else’s blood to keep me alive and it did not sit well with me. That was in 2005 that was a dark time in my life. I am lucky that REVLIMID was approved for MDS patients in 2005 and I was placed on it in 2006 to my doctor at the time it was a new drug. She said ” we can not keep on with these transfusions so we have too try something so I am going to try REVLIMID.” So can I make it to 85 I am 81 now ? 13 years and still counting with no transfusions. Will some other illness take me down and not MDS maybe? Their are so many things that can do that should I dwell on all of them ? So why worry about MDS.

[Pat Lawson]

Patrick – I pray that someday my husband will someday accept this. But right now with the 2 treatments he is on he is basically down for 2 weeks each month because he is so fatigued. He was a very active man still working in construction before he was diagnosed with this disease. He landed in the hospital in October so weak and out of breath and found out at that time that he only had 4 pints of blood left in his body. I started writing in this thread back in May and he had just had a biopsy showing his blast count and claimed he was in remission so at that time he was very hopeful. He thought that he would be able to get back to somewhat of a normal life as weather had warmed up here in Maryland. But as I’ve said these treatments are taking a toll on him and now he is sick. He went for blood tests last week and his WBC was at 0.6 and his hemoglobin had dropped to 9.4 (it has been staying at 12-13) Red blood count was down and platelets were down so I know that has him worried. We will find out tomorrow if he can even start his treatment because they do blood tests before they start. He is due for another biopsy in August. I pray for better days. Thanks for listening.

[John Moser]

Misty:
I just finished my 19th cycle of Vidiza. My first 12 cycles were on a 28 day schedule. I had low wbc that didn’t improve very much, treatment was postponed two times due to the counts. I was told that either the Vidiza had stopped working or I progressed to Acute Myeloid Leukemia by a NP. A later BMB showed my counts improving with Blasts at 2%. My treatment cycle was changed to a 42 day cycle in October 2018 and my counts have remained in acceptable range. I have had few Side effects, mainly fatigue and real bad constipation, and injection site soreness.
I was told that I would not be a good candidate for stem cell transplantation due to my age(72 at the time ) so Vididza was one of my two options. So for me Vidiza has been well worth it.

[Judith Barnes]

I just completed my first 7 days of Vidaza and can report very little in the way of side effects. So far, so good! Drink lots of fluids and take care of yourself. Good luck! 🍀

[Mark Rogers Mark]

I am about to start treatment with Vidaza. My white blood count has been dropping for many months and my Doc wants to start in October. I have been really afraid to start this and was on the verge of saying “no thanks and good bye” but the replies above have given me some hope… I am 75 and a Vietnam veteran which is where I got it I’m sure. Everything there was toxic…Agent Orange, Jet Fuel, and for me, Malathion. I am encouraged and think I’ll try it at least..After that we shall see. Thanks to all of you for being there for all of us who have this awful condition.

[Alma Pancir]

As I said in my previous posts, I tried the Vidaza for 4 days. On the fourth day I woke up with low oxygen count and difficulty breathing. I went to the ER and was admitted to the hospital. Somehow the chemo affected a previous condition from a paralyzed diaphragm that had been corrected with surgery. I had to have oxygen 24/7. Released from the hospital after a week without a clear diagnosis. Of course I cancelled the rest of the chemo which left me with low blood counts on all levels. This was in July. My hemotolagist has given me injections of Zarxio for the WBC and Arenesp for RBC. HGB is staying steady. My Platlets went from 80 to 163. WBC was 10.10 and RBC 4.12. Quite a bit of prayer is also going on so I thank God and my doctor for these results so far. I guess due to my age almost 87 and my lung problem, I take one day at a time.

[Mark Rogers Mark]

Alma: That’s quite a story and I fear that Vidaza might be a similar torture for me even though others have had an easier time.. My Hgb is 9.4, WBC about 2200 and platelets dropped to 62. My Doc won’t start me on transfusions saying at the level my Hgb and reds are it may cause blood clots/stroke. I have just yesterday come down with some flu like infection which has me drained. That plus the anxiety are really dragging me down. I don’t see my Hematologist until Oct 17. My PTSD causes horrible panic attacks which when mixed with the MDS symptoms really drag me down. I read about all the people who have tried the experimental treatments and admire their courage but that is not for me…I’m having a huge problem with anxiety as it is.. Thanks for all your input…

Mark

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