Vidaza Vs. Transplant

[Vera W]

Hi all, I spend so much time reading that I always run out of time and energy to write. I WAS DX in 10-08 with RAEB II 11-12% blasts, Normal Chromosomes! I had no symptoms. I was a little more tired than usual which I chalked up to menopause, I turned 55 in August. I have Never been in the hospital and never been seriously ill. My condition was found by routine blood tests, and I have nothing but the utmost praise for the quick and professional treatment I have received from all the medical personnel that I have been involved with. I had several tests to rule out other problems but finally had my BMB in Oct. I was really not feeling bad at all and had just returned from an Alaskan cruise. I think that I actually surprised my hematologist because he really expected a low grade MDS. So within a week I was offered Vidaza, a clinical trail with Vidaza and an alternate drug that they are testing or the transplant option search.I didn't feel like I could do the 100 mile round trip to Sacramento Ca so I opted for the vidaza at my drs and my brother started his ALS testing. I am really impressed with Sutter Heath. I started My vidaza injections on Halloween 08. My doc was really worried that I could have had AML in 6-9 months and we were both counting our blessings. I have done well with the vidaza. I have the on sight reaction which is my stomach. It gets red and hot like a sunburn and even peels and tans like a sunburn. It is uncomfortable but not devastating. I have had both diarrhea and I was a bit impacted on my first cycle and I have learned how to manage it. Sore stomach, some dizziness but all in all I don't consider this bad. When I started my WBC was 1.9 and my nuetrifils 19%. My reds are a little low 3.22 lowest (3.77) now, my Platelets are never very low. The week that I have my injections my counts are perfect.5.5 WBC, 65% neutrifils. Of course it cycles down and over the holidays My WBC was very low but I never became neutropenic. Even though I was very tired at times I did OK. No blood boosters or transfusions and I am not bragging here, but I am very very Thankful! No fevers either and I think I blow my Docs mind!
Sorry this is so long but it is hard to say it all briefly. This is what I need help with. My brother was not a match, however I had several potential hits on the BM data base and a few weeks ago my doc called to tell me that a perfect match had been found. At first I thought that if I knew that I was doing well on the vidaza why would I want to subject myself to the unknown. Kind of like the devil you know and the devil you don't know. I researched this a lot and my Dr was so cool about it and he didn't want me to feel like I was being pushed in to it but said that he thought it was my best chance for long term survival.(The transplant Dr wants to do this yesterday if not sooner!) We talked about how smart the immune system is and it's kind of like the meds work for awhile but the litter bugger bad cells seem to find a way to beat the system and if the vidaza stops working what will I do next? That really made an impact on me! I just stated my 4th vidaza cycle and I was going to have another BMB before I made my decision but my health care advocate said not to be lulled into a false security. So they have started the ball rolling and I will be stating my pre transplant testing soon. I need input from any one that has been through this. Am I making the right decision? I am very healthy and strong, the chemo and the radiation scare me!Thank you for reading this. Vera

[Hopeful]

Hi Vera,

I haven't been through a transplant but see the potential for one in my future. Although our MDS subtypes are different, are situations have similarities. I also feel "healthy" even though I have low counts in all my lines. It's hard for me to believe that I am as sick as the doctors say that I am! I've just gone through ATG therapy and am showing signs of responding as measured in the time between my transfusions. However, like you, this treatment is just buying me time - there is no cure for MDS without a transplant. You are young and strong. I think you are making a wise decision. I wish you the best!

[Robsocal]

Hi Vera,

I am going in for SCT this Monday. We are alike in very many ways in that we are strong and healthy and for the most part feel really good, I know what an agonizing decision this is to make because of the possibility that one won't make it through the transplant. Unfortunately, this is the only chance we have. Drug treatments can prolong life for a while, but transplant is the only chance for a CURE. Of course we dread the chemo, radiation, and possible side effects, but these are only temporary. For me, I would rather take on the risk of transplant and hopefully living a very long and healthy life than wake up each morning wondering what is going on in my body and how much time I may have left. Also, the healthier you are going in, the better your chances of course.

I think you made the right choice. Best wishes to you!

[ESeda]

Vera, thanks for sharing your story. Making this decision is something nobody wants to make. It is almost like damed if you do,and damed if you don't. My wife Nellie has little option but to stay on Vidaza treatments in the hope of extending her life. Because of her poor health otherwise, her chance of surviving a transplant is very slim. She is 64 now and she and I have talked about this subject over and over again. She has decided to stay on the treatment and not risk the transplant, even though a perfect match has been found.

The deal breaker for us is all the other health problems she has. I feel we would jump at the chance for life w/o Vidaza if she was in the same situation, health wise, as you are so blessed to be. Probably an MDS specialist for a second opinion may be wise. Just to make sure you are aware of all the options in the trial stage that you may want to consider, and to verify your condition. Then once you are satisfied you have done your due diligence, go for it, we would.

Not a simple decision by any means, but God be with you and bring you peace of mind, once your decision is made.

Eli

[flowerlady]

Hi,

I know just what you are saying but, especially now while you feel well, it is time to listen to your Drs... I was lulled into a false sense of security with Revlimid for about a year and a half. I had very minimal side effects with it and then out of the blue....just before Thanksgiving this year my counts dropped significantly. It was quite a shock. I also acquired a new abnormality that changed my diagnosis. Since November had another BMBX and have received several other Drs. opinions and have been told that my blasts have also jumped from less than 5 a year ago to the 10-12 range. I began the Vidaza the day after Christmas and have just completed round 2. I rec'd mine in the abdomen as well... will have another BMBX to see if there is any remarkable decrease (slight chance, usually can take several more rounds but we don't want to take that time or chance) and then head to Houston for further therapy and SCT. Time is of the essence as the higher the blasts climb your %'s for successful transplant change, as well as the chance that your abnormalities can change. I will be heading out next month for a allogeneic transplant. My brother is my donor. A true blessing! At our age we need to act quickly while we have no other health complications. This will greatly improve our chances of a successful outcome! Try and be brave, I know the fears...I have them too...get several opinions, read all you can from the reliable current sites and think future!!! You have one of the very best Ctrs. in the nation in your backyard and what a perfect place for another opinion. I am here if you ever want to visit...

[Vera W]

I had another visit with the transplant doc on Thursday, I really like him. He received his degree from Stanford University. He is easy to talk to. I am still waiting for the donor to do his thing. He is a a 25 yo male. I have a second back-up donor that is a 30 yo female. that it all the info I have at the moment. He said that they are both very good matches and explained that there really isn't a perfect match unless it is your own or an identical twin. I guess all the major antigens have lined up and the doc said that there are always a few minor ones that will come through but it is huge to be able to line up the major ones. I am trying to learn as much as I can about all of this. in the mean time my counts are normal two weeks in a row. My wbc is still 8 and my rbc is 3.81 and that is the best yet! Hemo is 12.8 and neutriphils 61%. I think that I will be having my transplant at a optimum time. If this MDS had gone unnoticed for a few more months I could have had AML and a not so good a prognosis!
Eli I sure hope that Nellie is doing better, she is in my prayers.
Best to all, Vera

[Vera W]

If all goes as planned my transplant date is April 10th. I will go in the hospital around the 1st of April.

[Vera W]

This whole thing is happening so fast it is mind boggling. I start my tests Monday in Sacramento. They are going to try to do them all in one day. I also start my next round of vadiza next week. I will keep you posted..Still feeling a bit nervous!

[Beth I]

Good luck with all of the tests, Vera, it sounds like a grueling process. My thoughts are with you, and I'll be keeping tabs on your progress as I "look forward" (HA!) to my own BMT this summer.

Beth

[Vera W]

Thank you Beth, we all need all the support we can get. Robs SCT is today. He was writing me regularly but started having a rough time with the Chemo around Sunday and is now down for the count. His sister has been updating his progress and is asking for lots of prayer for him. I will update you all as I find out things. Peace, Vera

[PH Steele]

Vera, have you had a recent report on Rob? I was just reading the posts and am very interested. I have a young friend (20) who is just in the beginning stages of seeking a donor and having a transplant due to his recently diagnosed MDS. I am seeking encouraging stories. Thank you PHS

[Vera W]

Rob wrote me this afternoon. He actually wrote me while he was receiving his new cells!The chemo gave him some nausea and he threw up a few times but he is in good spirits and doing well. You can send him an e-mail through this web
site, I'm sure he will write back! He is waiting to see what type of rejection issues this will bring.Take care.

[Mike Conlon]

Originally Posted by Vera W

Hi all, I spend so much time reading that I always run out of time and energy to write. I WAS DX in 10-08 with RAEB II 11-12% blasts, Normal Chromosomes! I had no symptoms. I was a little more tired than usual which I chalked up to menopause, I turned 55 in August. I have Never been in the hospital and never been seriously ill. My condition was found by routine blood tests, and I have nothing but the utmost praise for the quick and professional treatment I have received from all the medical personnel that I have been involved with. I had several tests to rule out other problems but finally had my BMB in Oct. I was really not feeling bad at all and had just returned from an Alaskan cruise. I think that I actually surprised my hematologist because he really expected a low grade MDS. So within a week I was offered Vidaza, a clinical trail with Vidaza and an alternate drug that they are testing or the transplant option search.I didn't feel like I could do the 100 mile round trip to Sacramento Ca so I opted for the vidaza at my drs and my brother started his ALS testing. I am really impressed with Sutter Heath. I started My vidaza injections on Halloween 08. My doc was really worried that I could have had AML in 6-9 months and we were both counting our blessings. I have done well with the vidaza. I have the on sight reaction which is my stomach. It gets red and hot like a sunburn and even peels and tans like a sunburn. It is uncomfortable but not devastating. I have had both diarrhea and I was a bit impacted on my first cycle and I have learned how to manage it. Sore stomach, some dizziness but all in all I don't consider this bad. When I started my WBC was 1.9 and my nuetrifils 19%. My reds are a little low 3.22 lowest (3.77) now, my Platelets are never very low. The week that I have my injections my counts are perfect.5.5 WBC, 65% neutrifils. Of course it cycles down and over the holidays My WBC was very low but I never became neutropenic. Even though I was very tired at times I did OK. No blood boosters or transfusions and I am not bragging here, but I am very very Thankful! No fevers either and I think I blow my Docs mind!
Sorry this is so long but it is hard to say it all briefly. This is what I need help with. My brother was not a match, however I had several potential hits on the BM data base and a few weeks ago my doc called to tell me that a perfect match had been found. At first I thought that if I knew that I was doing well on the vidaza why would I want to subject myself to the unknown. Kind of like the devil you know and the devil you don't know. I researched this a lot and my Dr was so cool about it and he didn't want me to feel like I was being pushed in to it but said that he thought it was my best chance for long term survival.(The transplant Dr wants to do this yesterday if not sooner!) We talked about how smart the immune system is and it's kind of like the meds work for awhile but the litter bugger bad cells seem to find a way to beat the system and if the vidaza stops working what will I do next? That really made an impact on me! I just stated my 4th vidaza cycle and I was going to have another BMB before I made my decision but my health care advocate said not to be lulled into a false security. So they have started the ball rolling and I will be stating my pre transplant testing soon. I need input from any one that has been through this. Am I making the right decision? I am very healthy and strong, the chemo and the radiation scare me!Thank you for reading this. Vera

Since I was too old for a transplant I can't address that part of your issue. I started treatment with Dacogen in May, 2007 and after completing my 14th cycle of treatment I was declared in total remission in Feb. 2009. The issue is that currently for me there is no cure for MDS. The only current cure that I am aware of is a transplant. For some really great insights into one persons experience with a transplant go to mdssurvivor.com and read her story plus the perspective of her husband who was her caregiver. This is the best story I have ever seen. Good luck in the future and I will pray for you every day.

Mike Conlon
Go Steelers(Seven is Heaven)

[Vera W]

Hi Mike, Do you feel a lot better with the remission? Do you mind if I ask how old you are? My friends brother in law is 70 and had a mini transplant a year ago and is doing great. He just went on a cruise. He had leukemia . Just a thought! Glad you are feeling better. Thanks for Writing,
Vera

[Vera W]

This has been an amazing week, Had all of my pre-tests Monday. Set the date April 3rd. Day -8. April 10th will still be my transplant day. Had a tour of the Transplant wing and I was pleasantly surprised that there were only 6 rooms. You can go anywhere you like with-in that wing as long as you don't have an infection. The whole area is filtered. The rooms are large and there are lots of windows. It has a good feel. I was really caught off guard when my 2nd BMB came back with 2% blasts and no detectable blasts on the cytometric flow. I was blown away, I have had 4 rounds of vidaza. My doctor said that I was basically in total remission. He said that I was at an optimal time for a transplant. the only problem is I felt that nudge of wondering if I need the transplant again..Don't worry I'm doing it! I will start a new thread in transplants when the time comes and give you as much information as I am able to!

[Neil Cuadra]

Originally Posted by Vera W

Had a tour of the Transplant wing and I was pleasantly surprised that there were only 6 rooms. You can go anywhere you like with-in that wing as long as you don't have an infection. The whole area is filtered. The rooms are large and there are lots of windows.

After we had our pre-transplant tour, I asked them if Ruth could have a particular room because it had a window overlooking a nice garden. They let us have that room, but it turned out that bright light hurt Ruth's eyes, so we had to keep the blinds closed the whole time she was in that room!

[Mike Conlon]

Originally Posted by Vera W

Hi Mike, Do you feel a lot better with the remission? Do you mind if I ask how old you are? My friends brother in law is 70 and had a mini transplant a year ago and is doing great. He just went on a cruise. He had leukemia . Just a thought! Glad you are feeling better. Thanks for Writing,
Vera

Take your choice. I am either 70 or 13. In Nov., 1995 I was in a very bad car accident. Unclear, I was either gone once and it took three shocks or I was gone three times. Some people have told me when you are gone and come back that is your new birth date. Addressing remission, I found out in Feb. 2009 I was in remission, except for the feeling of elation I really don't feel that much different than I have for the last several months. I have had a great deal of trouble sleeping, but about 3 months ago I started taking Xanax at night and sleep much better. I still recieve Dacogen five days every eight weeks and always have some degree of fatigue. All this said, life is great.

[Vera W]

Originally Posted by Neil Cuadra

After we had our pre-transplant tour, I asked them if Ruth could have a particular room because it had a window overlooking a nice garden. They let us have that room, but it turned out that bright light hurt Ruth's eyes, so we had to keep the blinds closed the whole time she was in that room!

The rooms all face east and there is a lovely view of the cancer center, I know Rob was having light sensitivity also! Maybe I should bring my sunglasses!

[Vera W]

I finally gave up waiting for a call and called back and got a date and patient number, but not till May 4th for first appointment. My doctor is trying to get that moved up and trying to talk with the new doctor, he is attending a conference.Waiting and more waiting! But my bloods counts are all normal thanks to the Vidaza.. I will keep you Posted