MDS Naples FL, 3/2008

[ESeda]

Hi All

Sorry we all have to be here. My name is Eli. I am writing for my wife, Nellie. Recently dx in 3/08 with MDS intermediate level with 5% blasts, chromo abnor, current bc @ 11.3 up from 8.4, on her fifth tx. Currently on Procrite. She is 63 and has been challenged with lupus since she was a little girl.

We live in Naples FL, and are scheduled for an initial apt @ the Shands of Gainsville, UF, May 16. Is there someone else on this forum that lives near Naples or it's surrounding area, that may also be familiar with Shands.

And, what should we be thinking about prior to our apt so we can be prepared for the Dr. Chris Cogle, BMT Clinic.

Please feel free to comment.

Eli

[Ruth Cuadra]

Welcome, Eli.

I know what you mean about being sorry to have to be here, but this is a great group for getting first-hand information and support about dealing with MDS. If you haven't already done so, you should contact the Aplastic Anemia & MDS International Foundation (click on Diseases & Drugs, then on Educational Materials) and order their information packet about MDS. It will help you learn more about what you and your wife can expect and how to communicate with her doctors effectively.

As you probably know, there are drug treatments for MDS that have become the first line of defense--often before transplant is considered. You'll want to know which of those might be appropriate for Nellie, what the short- and long-term side effects would be, and how they would affect her quality of life. You'll also want to ask about the impact of any treatment on her lupus.

It sounds like she is responding to Procrit but is still transfusion dependent. If she is going to continue receiving blood and/or platelet transfusions, you want to be sure that she receives "irradiated" and "leukocyte-reduced" blood products. These are processes in which the blood is treated to remove antibodies that could cause a reaction when the patient receives the transfusion. In the case of MDS patients who might receive many transfusions during their treatment, it is important to limit their exposure to these antibodies so they don't become overly sensitive to blood products.

If her white count is also low, ask about precautions she can take to lower her risk of infections.

Don't be afraid to ask the doctor to repeat information or give more explanations until you are sure you understand--and the doctor should be willing to do this.

Please don't hesitate to post your questions and concerns here. There are many members who collectively have more experience dealing with MDS that most doctors do--and we are very willing to help.

Regards,
Ruth Cuadra

[Dick S]

Eli, first off welcome and know that you are not alone.
I live not far from you in Sebring,FL. I have MDS of the RCMD Intermediate type with <5% Blasts.
Listen to what Ruth just posted, absorb every word and get the info packet from the AA&MDS International Foundation, it will answer and solve a lot of your dilemma.
I personally have no experience with Shands, but a friend of mine who has had a tough road with Type T Leukemia has gone there and swears she got better treatment and answers than she did from Moffitt.
Eli, this is the place to "hang out" for answers and support and I wish you all the best on this journey that none of us wanted to take.

[ESeda]

Hi guys,

Thanks for your post Ruth & Dick, I def will put your info to good use.

Had some labs today & talked to the Doc. BC dropped 4 ticks, to 10.6, but plts and WBC up some, not much. Was hoping to hold BC @ 11, hoping the procit would do the trick. Friday we travel to Shands Hospital in Gainsville for initial apt with BM specialist. Hopefully they will do another BMB to compare w/1st. Then we can decide what treatment route to take.

Thanks again, I'll keep you posted here.

[ESeda]

Hi

Nellie and I attended the Shands BM Center, Friday. Dr. Cogle recommended no transplant. Instead suggests Vidaza treatments first, for four months. Then if remission is achieved, a possible mini transplant. Dr stated too many risks for transplant now. Got to do 7day 4 month period, then a BMB, then review the case for possible transplant again at Shands.

I thought I read somewhere on this forum that the sooner the transplant was done, the higher chance for success?? Thanks in advance for any comments.

Will see our Hemo/Onc on Tuesday, am to decide on start date.

[Birgitta-A]

Hi Eli.
Here is a link to guidelines about treatment for MDS. As you see it is complicated to choose the best treatment .
http://www.guideline.gov/summary/sum...5&nbr=5107#s23
Kind regards
Birgitta-A

[Birgitta-A]

Hi Eli,
I was surprised that I couldn´t find Vidaza (azacitidine) or Dacogen (decitabine) in the guidlines I posted. Perhaps these guidelines are more up to date:
http://www.nccn.org/professionals/ph...ls/PDF/mds.pdf
Kind regards
Birgitta-A

[Ruth Cuadra]

Originally Posted by ESeda

I thought I read somewhere on this forum that the sooner the transplant was done, the higher chance for success??

Eli,

Doctors generally want to put off transplants as long as possible because of the obvious risks. Drug treatments, like Vidaza that Dr. Cogle has recommended for Nellie, that have become available for MDS in the last few years are now the first line of defense.

Generally, the more transfusions a person has had and the longer they've been living with MDS, the more chances there are for complications from transplant. On the other hand, if there's a chance for a normal life without a transplant because the disease is stable, controlled by other drugs, or if there isn't matched donor, then it makes sense to avoid transplant as long as possible.

Let us know how it goes on Tuesday.

Regards,
Ruth

[Birgitta-A]

Hi again,
Now I understand that the first guigelines are from UK. Vidaza and Dacogen are not yet approved in Europe - skip those guidelines please.
Kind regards
Birgitta-A

[MNladyslipper]

Ruth,
I saw that you said doctors usually like to put off transplants as long as possible. We have been told the opposite by our doctors. My husband has and IPSS score of 2, but one doctor said he is high risk because of the amount of chromosome damage. He has 11 out of 20 damaged with marks on three more. His wbc and rbc are affected. He was diagnosed after going to be a blood donor. They wouldn't take him because his hemoglobin was so low. After testing, he was diagnosed with MDS RAEB 1. His blast are between 5 & 10%. He was dagnosed the end of January and has had three transfusions. He is on Revlimid and it does allow him to go longer between transfusions. They have not found a MUD and his siblings did not match. They are looking at cord transplant before the end of the year. The doctors disagree a little on the urgency. One hospital says the sooner the better for high risk patients, the other says to give the Revlimid a chance, but that we are headed for transplant.

He will be having surgery for diverticulitis this Friday as a preventative measure, so it doesn't flare up during transplant. We are very worried. His wbc is currently at 1.3 and his neutrophils are 0.18!!

[Ruth Cuadra]

Hi, Bev.

When I said doctors "generally" want to put off transplants, I was implying "if the patient's condition makes it possible". I guess I should have been a little more specific. It sounds like there is some urgency for your husband given the particulars of his diagnosis.

Having surgery for diverticulitis with such a low neutrophil count seems very risky. Are they giving him Neupogen to try to boost his white count before the surgery? Let us know how it goes.

Regards,
Ruth

[ESeda]

Good afternoon guys,

Thanks for all the attention and good info your giving Nellie & I. More recently from MNladyslipper & Birgitta-A. Visited with Dr Morris yesterday. He tells me only 299 illnesses to go and I could be a Dr. He is very pleased that I am getting such good info from you guys.

Since last week Nellie's WBC dropped fr 3.9 t0 3.2, RBC dropped fr 3.47 to 3.3, HGB fr 10.4 to 9.6 & plts dwn fr 46 to 42. Rec'd shot of Procrit and Vidaza begins on Thursday, this week. Right after they put the port in place.

I have some confusion. Dr Cogle says Vidaza is a bridge to a tx. To eliminate the abnormal cells first then do the tx. Dr Morris says Vidaza is instead of a tx, if it works, we continue the Vidaza. If it does not work, that means a tx. Confusing for sure. Are they both saying the same thing in different ways, or what??

[Birgitta-A]

Hi Eli,
I think the doctors tell you almost the same thing: Try Vidaza and we will decide about SCT when we know how your wife responds. Good luck with Vidaza !

When I got my port Jan 2007 I would not have let anyone use it the first two weeks - after the first weeks it have functioned excellent .
Kind regards
Birgitta-A

[ESeda]

Hi Amigos

Well My wife Nellie started on Vidaza treatments and has just completed her first series. It seemed her BC was dropping on avrg of 6-8 decimals per week. But since she began the Vidaza a week ago I noticed a larger drop. 9.6 <8.4. I expected the Vidaza to cause a drop so we were prepared for it. She needed a transfusion on Thursday. The only other side effect she experianced was some diariea after the first day on Vidaza with some tiredness. Otherwise she has done well.

Birgitta-A, I think your right. Both Dr's are probably saying the same thing. This treatment with Vidaza can be in preparation for a tx or for maintenance, if remission can be achieved, this would leave the door open for other possible choices. Such as:

The development of a new treatment where they collect patients' own blood stem cells, treat the collection with a virus that selectively targets cancer cells, and then re-infuse the cleaned up stem cells back into patients.
Currently testing this method is being done in animals, and they hope to have it up and running within a year.

If successful this would solve the rejection problems. Coupled with a mini transplant, reduce the risks significantly. Does anyone have any more info on this method of treatment??

[bluej]

Hello Eli & Nellie,

This is my first reply on this forum, but wanted to share my experience with Vidaza. Vidaza controlled my MDS for 12 months. I did not need transfusions during this time, and was doing well. So, yes, I feel Vidaza is a good treatment if it works for you. Recently, however, my red count dropped over 2 weeks at which time I needed transfusion. My doctor at Vanderbilt in Nashville, says I need to go ahead with a Bone Marrow Transplant. This would be reduced intensity BMT. I have agreed reluctently, because I'm simply scared. But, according to my doctor, I have a 50/50 change of a cure and could prolong my life 20 plus years. So, what do you do????? The other thing, is my age I am 56. Transplants are not offered to 65 and up at Vanderbilt as of now is my understanding.

Also, Ruth, if you read this, would you please write me...I could use some encourgement, I am a bit scared right now of the BMT but feel I have no other choice but to go for it. Thanks,

Erma

[ESeda]

Hi folks,

Round one with Vidaza is over. Other than dropped plts fr 45 <17 and elevated levels of iron 333, no significant side effects from Vidaza.

Emma, thanks for sharing. Have you had a recent BMB done to compare previdaza condition?? 12 months, not nearly long enough. What was the plan prior to starting Vidaza?? There are other drugs like Decogen, also getting good reviews. Good luck with your decision, we wish you the best.

[ESeda]

Hola Amigos

Nellie completed her second cycle of Vidaza last Thurs, a week ago. This Weds. she saw her doctor and had labs done. Over the last few weeks we saw her HGB <9.9, <9.6, then suddenly up to 10.2. w/o tx. Her plts jumped from 17 to >107 then again to >143. WBC dropped fr 3.8 <2.40 and now <2.00. Dr Morris said it's expected. Well I worry because Nellie has Lupus which already is an immune system problem.

Well, Nellie and I are positive that Vidaza is working. I guess we will have to see for how long it continues to work. "Blue" says it help him for 12 months. Is that about the average, or is the average still an unknown?? Is there anyone out there with a longer track record??

We are hoping the Vidaza will put Nellie in remission. But then what? Does she have to take Vidaza indefinately, or what?? Or is a transplant inevitable? And if so, why wait after achieving remission??? And what is JAK2 mutation?? Dr Cogle thinks she has this.

Bittersweet, that's what it is. thanks for listening.

Eli

[Steve Kessler]

Hi Eli,
I wascdignosed in 2001 and have been treated with vidaza and enbrel for almost 2 years now. It can certainly work for longer as some people have been on it for a number of years before it was formally approved. Also, I note that you are quoting the HGB to the nearest 10th. You can get analysis paralysis that way. When a CBC is done, the pathologist does a count of 200 cells on a slide. The composition of the slide isn't uniform all the way so a count in one area is going to be different from another on the same slide. Same with BMB's. The excess blasts are usually implied +- 2 so a number like 6% may be as high as 8% or as low as 4%.

More important is to watch the trend over time. How long Nellie will do well on vidaza is a function of a number of things. If she has responded within the first 4 months, the outlook is for it to work for a long time. Other people take longer, for example, me. I didn't start to respond until the 12th month. Odds are I will need some other therapy sooner rather than later.

Good news is that they're working on a number of cocktails, one of which I hope will be available to me when vidaza stops working. The pace of medical discovery is accelerating, so stay hopeful.

Steve

[ESeda]

Thanks Steve,
for pointing me in the right direction. I do appreciate all your comments. Do you think if the Vidaza continues to work, it will be used indefinately??

God Bless
Eli

[Harold P]

My husband was diagnosed in 2/08 with MDS RARS INT-1 secondary because of chemo treatments he had in 1998 for Non Hodgkin's Lymphoma. He has multiple chromosome damage including monosomy 7. We have seen 2 oncologist/hematologists, 1 MDS specialist, & 2 transplant doctors. After talking with the MDS specialist my husband, Pete, decided to try Vidaza. We were aware of the fact that your counts would go down after the treatment. Sure enough it did. Pete ended up in the hospital & had to have 2 pints of blood. We discussed the Vidaza treatment with Pete's hematologist/oncologist he sees off & on at the Mayo Clinic. This Dr. thought my husband should do the wait & watch since Pete had been feeling so good & his counts were pretty decent before the Vidaza treatment. After a lot of thought Pete decided to stop any further treatments of Vidaza at this time. He said maybe later on down the line he would start the treatments again. Ever since his counts have been improving.

6/3/08:
WBC 7.44, Neutrophils 5.15, RBC 4.59, HGB 13.8, Plt 260
7/8/08:
WBC 4.42, Neutrophils 4.94, RBC 4.42, HGB 14.6, Plt 204

So you can see that his counts are continuing to get better. He feels great. Pete's doctor here in Des Moines & the transplant Dr. at the Univ of MN think that the one Vidaza treatment is why his counts are doing so well. We don't know what to think. Pete hasn't had a BMB since 1/28/08, so we don't know if there has been any change in his chromosome damage. His Dr. doesn't want to do a BMB yet. She wants to wait & watch. She is very happy with his counts.
We are hoping & praying that something miraculous has happened due to the Vidaza treatment. If he can do this well after only 1 treatment then hopefully this will mean that the Vidaza treatments can be spread out indefinitely. I don't think any of the doctors know for sure. We are very thankful for this wonderful news & pray that it continues. We will keep you all posted.

We continue to pray for all MDS patients & their families.

Regards,
Pete & Sandy Peterson

[ESeda]

Hi All,
after the last increase in HGB (10.2) Nellie's counts jumped to 11.1, plts >253, but WBC way down to 0.7.

The doc withheld the Procrite but added two shots for the low WBC. Also ordered an MRI for and unexplained lower back pain. Has been treated with antibiotics and pain pills. The pain persists.

Her doc was very surprised with the jump in red cells and plts. But was not with the WBC. Why would the Vidaza have such and effect on the white cells?? I thought that Vidaza directed itself to killing mutant cells?? Does anyone have an explination for this??

Well, to end this post in a positive note. Nellie and I are very pleased with the current readings and expect them to continue....

Best wished for all,
Eli

[Birgitta-A]

Hi Eli,
Here you can compare complications in patients treated with Vidaza and patients given supportive care. As you can see low WBC:s (leukopenia) are much more common in the Vidaza group (48 % compared to 29 %).
http://www.rxlist.com/cgi/generic/vidaza_ad.htm
Good that Nellie´s RBC:s and platelets (no good drug for low platelets is approved by FDA yet) are much better !
Kind regards
Birgitta-A

[ESeda]

Howdy Folks,

Thank you Briggitta-A, for the informative links on effects of Vidazza on WBC. This week Nellie's whites came up some, reds slipped a little but the plates jumped even higher to 340. Developed mouth sores this week, very uncomfortable. Overall looks good.

Found out yesterday that a donor was found and further testing has been requested. BMT Dr. Cogle says we will keep that in our hip pocket for now. Some relief knowing that may be one bridge down.

I think I finally understand what JAK 2 is and why Dr. Cogle is interested in it's detection. JAK2 mutation is a protein switch in the genes that may cause Polycythemia Vera (MPD), which is a blood disorder in which your bone marrow makes too many red blood cells. May also increase WBC and platelets. If I understood Dr. Morris correctly, the JAK 2 mutant gene may also reduce productions of all types of blood cells. If the mutant JAK 2 exist, it may be what is causing the MDS. Currently there are studies targeting the JAK 2 mutant gene, and if successful may resolve some cases of MDS. Now, this is my understanding of information I believe I understood. Not a statement of fact stated by anyone. But Nellie and I have high hopes and Know that God is good, and gives you a way out of any dire circumstance.

If anyone has knowledge or any comment on this please write. God Bless you all and give you strength and understanding.

Eli

[ESeda]

Hi All,

Progress showing. Completed third cycle of Vidaza last Friday, CBC today: RBC 3.75, WBC 3.4, HGB 12.3 and plts at 155. All good. Now hope we can keep them there! Having minor mouth sores and rashes. Also constipation. Otherwise feel great!

One more cycle, then BMB and review with BM Dr. Cogle in Gainsville. I am sure all your prayers and best wishes are working. God Bless you all.

Eli

[Donna E]

Hi Eli,

Thanks for keeping us all updated on Nellie.
Please give her our love and know that prayers are always in action.
I praise the way you are caring for your wife . . .
God Bless you in that. You are living your vows and we are all proud of you and Nellie for holding on to one another through this.

I will be in touch . . .

Donna E