mds and vidaza new treatment

[crpa]

Hi everyone:
I am new to this site.
I am trying to research whether the Vizada treatment should be given in 5 days straight treatment or can be given 3 days and then be completed the following weeks with the remaining 2 days, or is it best to do the 5 straight days.
My husband just found out he has mds and the doctors advise him to start with this treatment asap.
We are still waiting for the bone marrow crygentric results.
I thank you for your experiences and input.
Regards, CR
PS : has anyone have experience with any doctors at pittsburgh,pa upmc centers.

[Birgitta-A]

Hi CR,
Nobody knows the best way to administrate Vidaza according to my doctor who is a specialist in Vidaza for MDS patients.

Most patients get 7 days in a 28 days cycle. Other 5 days + 2 (nothing weekends) or 5 days. One member in this forum is getting 10 days with very good results.

Most patients get 75 mg/m2 others 100 or 50 mg/m2.

Most patients get the drug under the skin (sc) and other in a vein (iv). The patients that have tried both seem to prefer iv administration. We are waiting for the Vidaza pill that is tested in trials.

You know MDS is not one disease but many and we all react different when we get drugs. So far Vidaza is the best drug for most MDS patients - a little more than 50% of the patients respond.

Hope your husband will have a good response :)!
Kind regards
Birgitta-A
71 yo, MDS Interm-1 dx May 2006, transfusion dependent from dx, Desferal and Exjade for iron overload, 2 injections Neupogen/week for low white blood cells.

[crpa]

Hi:
Thanks for your reply.
My husband and I just return back from hospital, he may need a blood transfusion.
His rbc wbc are low.
Hope to start the vidaza treatment on Mon.
I was concern if his counts are now low, doesn't the Vidaza tretment bring down the counts too?
Another confusing thing is his blast count on this past Friday was 15 % and now today it is 5 % , I didn't think it could change that fast.
Thanks for listening, apprecciate any input.
A newbie soon to be an expert unfortunately.
This all happens to just two weeks too fast for us.
From reading in the thread many others are in the same boat.
Regards, CR:confused:

[launch]

Hi CR,
This forum is awesome! Glad you found your way here! My husband (Ron) was diagnosed with MDS Feb'09 and he is the one Birgitta mentioned as being on the 10-Day Vidaza protocol. Ron will begin his 12th cycle of Vidaza by injection this wed (3/10/2010). I've been posting his continued progress on Vidaza, under clinical trial e1905. He is in the control group that does not receive the experimental drug (MS-275), but, does receive a lower than normal dose of Vidaza, which is 50 mg/m2. (It's sometimes a bit confusing, but, he is 218 lbs in weight, and receives a daily dose, calculated as 105mg. If he fluctuates in weight, the daily dose fluctuates). But, on this clinical trial, Ron is calculated to receive the same amount daily, for 10 Days... our inside joke is that he needs to shed a few pounds to lessen his chemo...

Ron was very sick in the beginning and had 6 aberations in his chromosomes. Since treatment, Ron's aberations have been reduced down to only the -5q deletion. We seeked a second opinion at the Moffitt Cancer Center, and Dr. Alan List recommended Ron stay on his current protocol, because Ron has had such wonderful response.

Please see the blood/lab posts for how well Ron improved on Vidaza... I pray that your husband has the same response... whichever protocol they decide on. Keep The Faith!

Cindy (Lauch is my sign-on member name).

[crpa]

Hi:
Thanks again for all the info, I will keep up the faith and hope that the vidaza does help.
I will check out the info about your husband, and appreciate the additional info on the weight and amount of dose.
My husband has lost some weight within the last month which is one of the symptoms that got us into the doctor.
We are still waiting for the additional bone marrow test results, the more detailed part with the cryogentics ??( I think that is the term)?
The site is very informative.
Thanks again.
CR;)

[launch]

Hello CR,

Just to share... in the beginning, my husband, Ron, was very sick. He too lost weight and didn't feel like eatting much until about his 2nd cycle of Vidaza. He lost approx 15lbs. Now, he's gained it all back... and eatting like he did before he got sick....

In the beginning, I believe it was him feeling bad, combined with some depression about the new Diagnosis/change in lifestyle. In addition, Ron was also experiencing nightly "sweats" and elevated fevers... we had to ice him down several times with ice packs to help lower the fever. They don't recommend Tylenol, because it only "Masks" the problem. Thank Goodness, once the blood counts stabilized/increased, the problem went away...

Cindy

[Birgitta-A]

Hi CR,
You are right about Vidaza - during the first cycles all counts can decrease. Your husband can get transfusions for low red blood cells and Neupogen injections or similar drugs for low white blood cells but for low platelets most patients can only get platelet transfusions and they don't last long.

One patient in this forum, Kirby, is receiving a new drug, Promacta, for low platelets. That drug has only been approved for a bleeding disease called Immune Thrombocytopenic Purpura and it is probably difficult to get it for our disease.

Very good that the blasts had decreased :)! It is true that most counts vary much - I don't think they can measure everything exactely.
Kind regards
Birgitta-A

[crpa]

Hi again:
Your info on the drugs help out so much.
My husband has finally gotten his appetite back as much as possible, like you say a bit from trying to get over the chances in our lives.
We go tomorrow to have his rbc check and he may need a transfusion.
I hope not.
Thank God for the wonderful Doctors and nurses that are treating him.
I will check in soon.
I hope you both are doing well.
CR from PA mountains.
It is finally looking like SPRING, I hope that is a good sign for us all.

:D

[Mike Conlon]

Hi: I have been a patient at Hillman Cancer Center since May, '07. I have recieved 21 five day cycles of Dacogen. I have been responsive to Dacogen since Nov. '07 and in total remission for just over a year. I still recieve treatment for five days on a nine week cycle. My oncologist is Dr. Anastasios Raptis. If you have further questions re UPMC Cancer Centers you can reach me at mconlon@zbzoom.net Good luck with treatments.

[crpa]

Hi:
Thanks for the positive news about your progress.
I hope you continue on a road to recovery.
All this information becomes too much too soon.
My husband started the Vidaza treatment today.
TY all for your emails.
Think Spring and a new renewal.
CR

[rose mcmillin]

Crpa, I know how you are feeling, overwhelmed. My husband has been getting Vidaza for quite a while. Stay positive and remember to take care of yourself as well. This is a long road so try to stay strong. Happy Spring is so right. New Blossoms, new beginnings. Good wishes, Rose

[crpa]

Hi:
I thought I would write and update on my husband.
He tried 3 days of Vidaza it was ok until this week the blood work came back with his liver function test very high, so the doctor has stopped it and now we are waiting to hear what the next course will be.
His blood blast cell are up to 20 %
Very confused.
Has anyone on the site had any experience with liver trouble, he did not have any previous liver problems.
?????
crpa

[Barryinhuron]

Had my first seven days of treatment with VIDAZA Feb. 22 to Mar.2.
Hematolgy report today showed a increase in all my blood facters

LKC 3.1 TO 5.0
ERC 3.42 TO 3.78
HEMOGLOBIN 112 TO 128
PLATELETS 96 TO 110

[Birgitta-A]

Hi crpa,
Too bad with your husband's high liver function tests and increased blast cells. I read that about 16% of the Vidaza patients in a trial had increased liver fuction tests compaired to 8% in the control group. Perhaps your husband is specially sensitive to Vidaza and could try another drug.

Hi Barryinhuron,
It is not common with such a positive respons after the first Vidaza cycle. Congratulations :)!
Kind regards
Birgitta-A

[crpa]

Hi again:
We will be going down to another Dr. in Pittsburgh,pa, to consult for another
opinion on treatments and BMT option. Our local hospital just are not equipped very well for this type of problem.:eek:
Regards, Crpa

[Birgitta-A]

Hi crpa,
Good with second opinion!

You know a stem cell transplantation is always an option for younger patients - often they mean less than 65 - but in some clinics they do SCT in older patients too. How old is your husband? As far as I understand age is still the most important variable for a positive outcome.
Kind regards
Birgitta-A

[roger]

MDS on Vadaza going on cycle 5. During the last cycle bumps started to appear on my thighs and calves. It was dx as ERYTHEMA NODOSUM. Curios if anyone else has had similar experience.

Doc thinks it may have been a side effet of the Vadaza and has oferred me the choice of continuing with Vadaza or going to another drug. This one is by IV and for 5 days Since I chose continuing with Vadaza he did not mention the altterante chemo.

Can someone tell me what other chemo they can offer for MDS and what, if any, are the side effects and is it as effective as Vadaza.

I'd appreciate hearing from you prior to talking to my Onc next weeks.

Thanks all
God bless
Roger

[Birgitta-A]

Hi Roger,
You know Vidaza with a little more than 50% improvment is the best drug for most MDS patients.

There is only one other drug approved for MDS patients without the 5q- chromosome aberration: Dacogen (decitabine) 17% improved. http://www.medilexicon.com/drugs/dacogen.php

Then some patients (one member of Marrowforums) have good results with Epival (valproic acid) 44% improved.
http://bloodjournal.hematologylibrary.org/cgi/content/full/104/5/1266

Some patients without the 5q- chromosome aberration respond to Revlimid (lenalidomide) 43% improved.
http://bloodjournal.hematologylibrary.org/cgi/content/abstract/111/1/86

The patient groups in these studies are different - some have a more advanced disease so the results can not really be compared. I post the links so you could read something about the drugs.
Kind regards
Birgitta-A

[crpa]

Hi everyone:
My husband is 63 and now I think the next course will be waiting for the liver
levels to go down which they have and waiting to talk with the Drs on the other treatments, maybe complete infusion. His blast are back down today and his wbc and rbc are better which the doctor thinks was due to the Vidaza, but unfortunately my husband liver can not take it. Which was weird, he did not have any liver problems before.
This sure is a confusing disease.
Trying to think positive and Welcoming the Spring season with more sunshine.
Thanks again for all your ideas and info.
PS:
My husband did have some bruises from the injection in his arms , but seem to tolerate the shots in his legs.
:rolleyes:

[Birgitta-A]

Hi crpa,
Good that your husband did have some positive effect due to Vidaza though he only got the drug during 3 days! He is considered quite young and can get all types of treatment. You mention "complete infusion" - I don't understand that expression. Do you know what kind of treatment his doctor will discuss with you?

Positive thinking hopefully improves our immune systeme.
Kind regards
Birgitta-A

[crpa]

I am sorry I meant induction chemo for 7 days I guess.
But I hope they try some other drugs first, because what I read that is a very intense procedure.
They are talking about dacogen, I seen you say it is not as good as Vidaza, but of course everyone is different.
My husband is younger, but he does have some heart issues.
We are hoping for the best.
I however , would like to have what is best for my husband's and hopefully we will find more out next week.
Have a good weekend, CR

[roger]

CRPA, you said "husband did have some bruises from the injection in his arms , but seem to tolerate the shots in his legs."

Where in his legs does he get the Vadaza shots. Curious because so far they have only given me mine in the stomach which I'm growing not to fond of and in the arms

My next cycle begins Monday so I'd appreciate a quick response.

Thanks and God bless us all.

[launch]

Roger,
My husband, Ron, receives injections in his stomach - he tolerates them really well... but, another man we grew to know was very thin & didn't have as much fatty tissue on his body as my husband had... so, he would alternate sites each day... he had it in his inside, upper thigh and in the back of his upper arm, in the fatty tissue. He asked the nurses and they advised him of where he could receive it. Now, the nurses ask him where the target of choice is, daily, before injecting him.

Good Luck, Cindy

[launch]

CRPA,
Good luck on the new treatment. I'm sorry Vidaza wasn't the choice drug, as, it's a struggle enough dealing with the diagnosis, then, having to change treatments and make decisions about treatments is so very stressful & Frustrating. I learn so much from all of the wonderful members on this forum, and they have been a wonderful support system for me and my husband, Ron. Hang in there.... and keep the Faith. There are more drug choices & treatments available..... hopefully the next one will be the one that puts him in full remission....

God Bless....
Cindy

[crpa]

Happy Spring to you all:
Roger, my husband received the shots in his upper top of his thigh, he is of average weight for a reference point.
But as they said the nurses would move the locations around as needed.
The arms seem to be a bit of a problem I think because of laying down to sleep .
I hope your treatment continues to go well.
Keeping the faith and thanks for all the wonderful note about treatments it helps out alot.
CR

[Nick]

I have been on Vidaza for 6 months now. Seven days of injections every 28 days. This is divided into two as too much in one injection so I have one in each arm or leg or tummy. Since it is in the fatty tissue just below skin surface none is too painful. I am however rather thin so nurses are amused by not being able to find any fat on me!
My weight dropped from 8stone 12lbs to 8 stone 3lbs but I have recently been able to get it back up to 8st 8lbs.
The nurses always ask where I would like the injection - arms, legs, tummy or backside. I used to go from arms to legs and back as I did not fancy it in the tummy or backside. The legs injections are not painfull but the after effects not good - I found walking v. painful and my balance became a bit wobbly.
I now go for arms and tummy (I have needed to inject myself with GCSF to stimulate Neutrophils as count has been down to 0.1 recently and after an initial need for a whisky before injection can now do it straight off - but still hate the point of the needle going in - I keep telling myself that it's either doing it myself or waiting for 2 hours in the hospital for someone else to do it). To get to the point tummy injections are ok as it does not interfere with my sleeping position. With a low platelet level (5.0 this week so needed 2 x platlet bags) my tummy looks like a series of red and black mole hills - but who cares it does not hurt to much.
Oh and if you have hairy arms (men that is!) I suggest shaving the lower part of your arm (i.e. wrist) so when the plasters are taken off after a platelet trans it does not painfully rip the hairs of your wrist.
I have virtually no side effects from Vidaza - constipation and really bad stomach pains at first but now under control with Senna and Lactulose.
Hope this helps someone. Please ask questions if I can help.

[ann]

Hello crpa, welcome to the forum. It has been a blessing to me and I hope that you will be blessed also. My husband, Henry, was diagnosed on June 30, 2009 with MDS. Our lives changed. He has had 8 Vidaza treatments. The first was a series of 7 days but since then it has been 5 days. We are on a 28 day cycle. He goes in this morning for his next treatment. He is doing very well. He was admitted to the hospital 3/10 for fluid reduction and had 3 units of blood. This is the first transfusion since Sept. '09. Before he started his chemo treatments he was in the hospital and it was decided to put in a port. He receives his Vidaza through this port. He also receives his transfusions there. It has been a blessing. He hates needles and this makes it a little better. You and your husband are in our prayers. God bless.

Hello roger! I had been wondering how you were doing. You are on the same schedule that my husband is but he is a couple of months ahead of you. I hope that you are doing well. Think of you each time I log on. Glad to hear from you. God's blessings.
ann

[bun]

I hope for good results for everyone. My husband (age 48) has been on Vidaza treatments for 13 cycles. He receives 7 days of 2 shots per day (75mg each). He rotates the shots from arm left, arm right, leg left, leg right, stomach left side, stomach right side, then 1 shot in each arm on 7th day. Injection site soreness (like sunburn) from 1 day after treatment lasting 3-5 days each + some general achiness & tiredness during chemo week, and short term mild nausea are the Vidaza side effects he has. He sees a local hematologist in Minneapolis, MN and one at Mayo Clinic in Rochester, MN. Both consider his MDS in remission - Currently his blood counts are almost normal (only platelets are slighly low). Both hematologists suggest staying with Vidaza for time being. Eventually he will have a stem cell transplant & has 3 sibling matches. (We feel blessed by this).

He considers the Vidaza side effects minor compared to his lessened quality of life before Vidaza. His MDS also causes an autoimmune response - fevers, vasculitis, & arthritis like symptoms - in addition to low blood counts for red, white & platelets (sometimes just 2 of the 3 would be low). Prior to Vidaza, his autoimmune problems received a partial response with 12.5 - 15 mg / day of prednisone + 25 mg once a week methotrexate. The fevers & aches never were eliminated. It's a much different (& better) story once the Vidaza started to work. The methotrexate was stopped when Vidaza started ... & once the blood counts finally improved we were able to very slowly step down with prednisone. That was a huge accomplishment ... he'd been on it for almost 3 years.

Be patient with Vidaza - give it a few cycles before giving up.

[mausmish]

My doctor believes the 5 consecutive day treatment/28 day cycle is as good as the 7. I've responded extremely well but have only done 3 cycles. I don't know if there's a long term difference. Also, this drug appears to act very differently with each individual so it's difficult to predict. My Vidaza has been administered subcutaneously, 2 injections each day in my rather large stomach. Finally, I have found an instance where belly fat is advantageous! I started seeing positive results in the first cycle and amazing results after two. I just finished my third last week.

Good luck!

[ann]

I'm curious about the shots of Vidaza. What doses are given that way? How long does it take? My husband's oncologist had a "port" put into my husband's chest just below the collar bone on his right side. He receives his treatments in this port. They inject an anti-nausua drug into the line before he gets the Vidaza and then after that is finished, they give him something else in the port. He just completed his 10 treatment Friday. Seems to be doing well. Had not had a transfusion since Oct. but had to have 3 units first week of March. We are praying that this treatment keeps doing well.

[mausmish]

I'm curious about the shots of Vidaza. What doses are given that way? How long does it take? My husband's oncologist had a "port" put into my husband's chest just below the collar bone on his right side. He receives his treatments in this port. They inject an anti-nausua drug into the line before he gets the Vidaza and then after that is finished, they give him something else in the port. He just completed his 10 treatment Friday. Seems to be doing well. Had not had a transfusion since Oct. but had to have 3 units first week of March. We are praying that this treatment keeps doing well.

I get two injections subcutaneiously into my stomach each day for 5 consecutive days. I believe each injection is 75 mg/m**2. I take my antinausea med (Zofran/ondansetron) orally, one tablet 30 minutes before each treatment.

[crpa]

Thanks everyone for your replies.
My husband had to stop the Vidaza treatment unfortunately due to side effects that were affecting his liver.
Too bad because we had heard so much good things.
But we are now IN Pittsburgh were he has started a 7day induction chemo due to a higher blast count.
We are remaining hopeful and trying to take it day by day and hope for a remission.
Happy Easter and Spring to all.
crpa:o