MDS Naples FL, 3/2008

[ESeda]

Hi All,

Thank you Donna for your kind words. Nellie has taken care of me for so long, it's my turn to take care of her, health wise.

She had a good visit with the doctor this week. All her blood counts are holding except the WBC has dropped. Needed neprogen shots to boost them. Also had a procrit shot. She started her fourth cycle of Vidaza today. After we see her doctor again on the 25th we will know when to schedule her BMB. Then it's on to Gainsville and her MDS specialist Dr Cogle. Then we will make a decision on the next step in treatment.

Nellie continues to feel pretty good, thank God. And with your continued prayer and good wishes, she will continue to improve. I pray for the same for all of you suffering with this mysterious decease.

Eli

[ESeda]

Best wishes to all that follow Nellie's progress.

She completed her fourth cycle of Vidaaza, Monday and had labs done the same day. During the week prior she was having terrible constipation problems accompanied with vomiting, then when she was able to relieve herself, came lose bowels. In addition she began having lite nose bleeds day and night. She and I suspected her plates had dropped suddenly. But we were wronge. Actually all her numbers are holding pretty good. WBC ^3.1 RBC <3.64, HGB @11.1 and PLT a respectable 133.

So the Dr suggested she may have a sinus issue and wants her to see an ENT to head off any infection. We will do that, although the bleeding has subsided. Now she needs to heal from the chemo and see her Dr. on Wednesday week to schedule the BMB. Got my fingers and toes crossed.

The testing for JAK2 was done and results came back negative. We won't know exactly what that means untill we see the MDS specialist in a few weeks.

Until then, God bless all you guys with improved health and happiness.

eli.

[ESeda]

Hi Amigos,

Got partial results of Nellie's BMB done last Friday. Comparing it to the first one done in March, it shows improvment in blast from 6% down to 0.5%. Pretty good huh. It will be a week before we have the cultures back. Hoping for improvment there. Then up to Gainsville to meet with BMT specialist to decide if to go for BMT or what. In the meantime we continue with Vidaza today. Nellie still needed Procrit and Neprogen shots for a boost.

Hoping you guys are all doing better. God Bless.

Eli

[Ruth Cuadra]

Hi, Eli.

This is really great news! Nellie sounds like she could be a poster child (ok, poster woman) for Vidaza. Getting from 6% blasts to .5% blasts in 4 cycles is amazing. You are both giving a lot of people hope by reporting on Nellie's progress.

I wish you continued success.

Regards,
Ruth

[ESeda]

Hi Folks,

Thanks Ruth.

Received the final cytogenetics on Nellie's BMB done a week ago Friday. Not sure what to make of the whole report. In addition to her blasts dropping from 6% down to 0.5%, the cytogenetics are now completely normal. Previously it was reported there were 18/20 abnormal metaphases. This result after only 4 cycles of Vidaza.

Should I just except the good news: should I question the first report: should I question the second report: should I be suspicious of anything? I thought that once there was chromesome damage the only way to repair it was with a transplant. What should Nellie and I be thinking. Should we ask for comformation. We expect the doctors will want to continue the Vidaza for eight more months before the next BMB. Is it really necessary to continue the Vidaza?

Well maybe I'm too hard headed and should loosen up some. We will see her doctor next week and I am hoping that someone on this site will have some good questions I can ask the doctor. Thanks in advance and god Bless.

Eli

[ESeda]

Hi All,

After such a great result on the last BMB Nellie and I became super optomistic. Expecting better and more consistent blood counts. When communicating with Dr Cogle at Shands in Gainsville, it was decided we need not make the trip to see him. He, Dr Cogle, stated he would only recommend we continue with Vidaza treatments for another 8 cycles.

So we did. Our expectations however, where not totally realized. After the Fifth cycle only mild improvement. After the Sixth cycle WBC and Plts climbed but RBC wained at 9.9. Suddenly three weeks after completion of the Sixth cycle WBC dropped from 4.1 to 0.8, plts held at 113 and hemo dropped to 8.7. Vidaza was postponed for one week while procrite and neupogen shots had a chance to improve counts. In the mean time I contacted Dr Cogle with concerns that the meds may now be working against us. This resulted in reducing the amount of Vidaza administerd by 50%.

A week later, yesterday, Nellie's counts improved some and the treatment was continued. Dr Morris our local doctor was suprised to see the counts do what they did, but offered no possible explanation. Dr Cogle did not offer any either. What am I to think??

During this time Nellie had to have her sinuses scraped, due to nose bleeds and minor infection, and an ultrasound on her belly done, because of blouting, which showed a small lesion in the upper part of her left kidney. No other signs. She has an appointment with a urologist next Weds. What next??

Well, I hope you are all doing better, God Bless and hang in there.

Eli

[katherineann59]

Hi Eli,
I just wanted to share my experience with Vidaza as I have been receiving treatments with this drug for 3 years now. I just saw my onc yesterday. I had been feeling down about the treatments and even thinking about giving them up and just allowing the disease to take its course. Well, my doc explained that the Vidaza has the disease in remission for me. He said I have had MDS for 8 years now. I didn't begin treatments, though, with vidaza until 3 years ago. The vidaza has had its side effects and these seem to vary with each treatment. I've had constipation on time and then loose bowels the next round, mouth sores, nausea, tiredness, rashes and bruising (when I was getting injections instead of IV treatments) and probably other reactions I've just forgotten just now. Still, my doc says the drug has me in remission. Unfortunately, I have other medical conditions that exempt me from a bmt, so I will be on vidaza indefinitely. My onc promises he will let me know when something else becomes available, but for now, he says, vidaza is the best treatment (for me anyway) available and it is still working its wonders with this disease. He told me that to stop the drug would mean that I would eventually develop a type of leukemia that is next to impossible to treat and that would mean certain death in as little as 3 weeks. So, on with the fight!! All of you are in my thoughts as we continue in this fight against this disease. I hope everyone has a wonderful Thanksgiving. I know that having this disease really reminds me of all I can still give thanks for in spite of the trials associated with being sick. Happy Thanksgiving to all here.
Kathy

[ESeda]

Hi Kathy,

Thanks for your encouraging post. I feel strange saying that your situation is encouraging when we all know how horrible having this dease is. And even knowing that the possibilities of a long life after dx get better as time goes on, you still will always be in a fight for your life. You are so young and deserve to have many more years ahead, I pray for a salution for you and all others in this forum.

My wife, Nellie, has been living with lupus since a young girl and has developed a mired of health issues putting her in a high risk area. A transplant for her is out of the question, unless a super safe procedure can be developed. Her numbers have improved this week and give us hope they will continue to rise. A recent ultrasound of her belly, done to investigate bloating, revealed no explanation for the bloating. However, exposed a lesion in her kidney. Now more tests will be done to explore how serious this maybe. Well her plate is already overflowing, what next?

Continued success with your treatment Kathy and God bless you and your family. Lets all hang in there together.

Eli

[Ellie]

Hi Eli,
I have been reading about Nellie's progress and am glad that Vidaza has helped. My husband was 57 when diagnosed w/MDS in 10/2006. John's doctor (in Naples) is also Morris. He was evaluated in Houston (Dr.Beran at MD Anderson who recommended Dacogen) and also evaluated in Gainesville by Dr Cogle. The sentence in your prior post has me very concerned due to another alarming similarity...

"...exposed a lesion in her kidney. Now more tests will be done to explore how serious this may be"

Please do not go into this lightly- Do not allow any invasive procedures to be done without other warning signs present (eg: super high Creatinine, blood in the urine)!!

Do not allow any imaging tests to be done with contrast!!

When John was originally diagnosed he felt fine, just tired. He complained a little of bloating & distension of the belly. The ultrasound showed "something" and, though no other symptoms were present, they sent him to a urologist (Wise) who non-chalantly did a procedure to see what the "abnormality" of the kdney could be. Wise reported to us that "it must have been a shadow from the way his organs are pressed together" because he was unable to obtain a sample adequate for testing...John went home in severe discomfort due to a stent left in his urethra.

When the pain & bleeding became unbearable, John insisted upon being admitted into the hospital to have it removed (against the Dr's advice).

Eli, to be honest with you that was the beginning of John's decline.

The dacogen treatments he received through out 2007 didn't improve the MDS, but perhaps ceased the function of the injured kidney and impaired the good one. To make a long story short, today he is on hemodialysis 3 times a week. The MDS is complicating matters - with low platelets and low HGB. He is so weak and weary now.

I am so sorry for being so gloomy & for going on & on, but as they say 'forewarned is forearmed'. If we'd have known then what we know now, we would not have placed blind trust in the Drs.

Please post to this thread if you have any questions or comments.

I wish the best for Nellie & You!!!

[ESeda]

Thank you for your concern and comment. So sorry for your husbands situation. I pray his condition improves soonest.

Why exactly did they leave the stenth in place? Have you ever found the source of the bleeding? What treatment is he on now?

Nellie's situation may be somewhat differant. The lesion that was detected recently, turns out, is one that was seen on a CT scan done in Jan 06. A new scan was completed and the cysto procedure done two days ago. Your warning reached us a couple days late. However, the CT showed only that the lesion increased in size from 18cm to 21cm. Not much growth over two and a half year period. Next Wednesday we will have the complete results of the procedure, which initially showed no bleeding. The lesion, we were told, is of a type that will eventually become cancerous. There was a trace of blood in the urine shortly afte the procedure but that was it. Her last WBC was in the normal range, plts were good also. Only the RBC has been floating in the nine's. I have been expecting them to climb to eleven or twelve.

Thanks again for your input and please don't stop. God Bless you and your hubby with better health and lots of good times thru the holidays.

Eli

[ESeda]

All the results are in from the CT scan and the Cystoscapy done on Nellie. All seems to be fine for now. Follow-up Ultrasound in six months. No answers as to her bloating. We believe it maybe the a side effect of all the meds. Kidney function slightly elevated and blood sugars are up and down. Fortunately Nellie has many doctors watching over her.

WBC dipped to 3.9, Plts @ 179 and hgn 9.3. Received Procrite 60, 4 more days of Vidaza, then Nuelasta on Monday after Christmas. She feels tired usually mid afternoon, takes a nap then up and around couple hours later. She is managing to do some cooking several times a week, and to slowly clean her own house. I am not much help, but I do some. She loves to cook and clean, says it makes her feel better when she is does.

I wish her red cells would climb to aroung 11 and stay there for awhile. Would make a nice Christmas present, Lord..... I hope you all get what you would like for Christmas, and an extra measure of health. Merry Christmas to all and to all good fight.

PS, thanks for being here for us.

Eli