Dad has MDS and going on Vidaza soon

[DadsGotMDS]

Here to get any all all information on the subject. Discovered he had it 3 months ago. Now after 2nd test they have found it got 50% worse. So he is going on Vidaza for 6 cycles. Don't know yet what classification he has yet. But since he is going on Vidaza three months after diagnosed tells me its one of the more aggressive stages probably. Any advise or past experiences welcome.

Thanks

[billyb]

Hello and welcome, you could be correct, going on treatment now could be a more aggressive classification but it could also mean you doctors feel by getting a jump on it they feel they can get it under control, its hard to say because you havent given a lot of info, I just assume your dad is going on vidaza because of his age or health. Some things that might help you about treatment are that going on a 6 treatment cycle will give the doctors an idea if treatment is working. Your father could experience a lot of different things, everybody is different, treatment lowers blood levels ( red, white, platelets, neutrifils, ect. ) blood levels are importent for bodely function, usually at about 3 months your father should be at his low and then hopefully they should start to rise, like I said everybody is different he could drop levels after 1 treatment, its important to keep track of your reports, more than likely they will pull blood one a week or one a month, so any way, with low white bolld counts you can get infections so be aware of your surroundings, wash hands and stuff like that, low platelets can bring on things like brusing, nose bleeds and sometimes in severe cases internal bleeding, they can treat low red counts and low platelet counts with transfissions and give meds for pain, most of the time when leukemia patients are going thru treatment they have bone pain and nausea, do yourself a favor and dont focus on statical data on life expendency, put your energy into possitive things, treatment time can be stressful at times, but ya'll can handle this, this site is very informitive and has loving and careing people on here that have been or are exactly where you are at, keep us updated, we are here to help, YOU ARE NOT ALONE.....Billy

[sbk007]

That's right you are not alone. Tomorrow 5/13/2013 I start Vidaza. 4 cycles. 7 days per 28 days. My Dx was 6 weeks ago. The reason they start asap is to keep the blast count from increasing. Also, for SCT, studies show that Vidaza or Dacogen treatment beforehand increases the survival rate (that's what my docs tell me). If a test was done 3 months ago, followed by another 3 months later, and the number of blasts increased that could be why. Its your right to ask the Dr's what's changed and any concerns you may have. Good Luck.

[billyb]

sbk, Hope all goes well with you to, we will be praying fo you, we are on our 6th or 7th round of Dacagon and we are stable

[sbk007]

sbk, Hope all goes well with you to, we will be praying fo you, we are on our 6th or 7th round of Dacagon and we are stable

Thanks! I'm encouraged and happy you are doing well.
I'm going to use the IV as opposed to injection b/c my hematologist says its easier to tolerate and the efficacy is the same. He gave me a script for Zofran for nausea, and all that great stuff..,, but the Zofran can cause headaches & to this very day for over 50 years had maybe a few and they didn't last long. I so don't want to do this...I guess nobody does.

[Chirley]

Hi, I had Zofran with my Vidaza......no headaches.

I had IV as well and it was quick and easy.

Good luck.

Chirley

[sbk007]

Hi, I had Zofran with my Vidaza......no headaches.

I had IV as well and it was quick and easy.

Good luck.

Chirley

Thanks! I appreciate that.

[sbk007]

Piece of cake ;).

I took 1-8mg Zofran tablet about an hour before they hooked me up to the IV.
It took around 30 minutes, and I walked out feeling no different than when I walked in except for being hungry.. Its now 2+ hours, Still early in the game but I'm sure glad those encouraging comments erased the fears of the not so encouraging ones I read elsewhere and there are a lot of them.
Zofran costs a lot of money so insurance companies don't want to pay or require authorization from your doc. However, there are generics ONDANSETRON HCL that only one pharmacy in this area carried. Costco had them they charge 27.00 for 60 of them as opposed to 14-16 bucks a pill for "formulary" Zofran. Had I not found them at Costco I would have had it by IV drip prior to the Vidaza increasing the infusion time by 15 minutes to satisfy my insurance company.

[Chirley]

Hi, I'm glad all went well.

I think you will find that the scary part is mid cycle when your counts bottom out. Don't worry too much, this is perfectly normal and your counts should improve again near the start of the next Vidaza cycle.

If I remember correctly, I did get a bit of muscle soreness around day 4 onwards for about a week.

Regards

Chirley

[sbk007]

Thanks Chirly & billyb for the info & encouragement.

Day 2 went well without incident. My Docs told me about the low counts and its expected to happen and I might need a WBC boost but I'm grateful to be
able to tolerate the treatment without the nausea, vomiting, shakes, rashes,
headaches, dizziness others have written about. Thanks again!

[Chirley]

I'm pleased things are going well so far. I didn't really have any problems with the Vidaza except low counts. I did get a fever starting around day 4 which lasted until the end of the cycle and was given covering IV antibiotics but I never had a proven infection and never did get sick.

Regards

Chirley

[sbk007]

I'm pleased things are going well so far. I didn't really have any problems with the Vidaza except low counts. I did get a fever starting around day 4 which lasted until the end of the cycle and was given covering IV antibiotics but I never had a proven infection and never did get sick.

Regards

Chirley

Yer making me nervous ;)... now w/ the fever and muscle soreness day 4 tomorrow will be day 3 for me. I was happy to get past day 1 without incident...I know, Nothing comes easy. Especially for what the benefits can be, small price to pay.. I thought the low counts came after the cycle but everyone's different. In fact 2 weeks ago the Dr told me my HG was 7.5 and I might need a transfusion but last week the Hg rose to 8.5 so he sent me to treatment on half a tank. I sure hope I can avoid a 6hr blood rush till after this little adventure. Stay well & Take care, thanks for thinking about me
Steve

[SLB]

I had vidaza as an injection which left my stomach with very sore angry injection sites so at least with Iv you don't have that worry. I was on zofran & had no nausea etc however the zofran did cause issues with constipation (which I know others have mentioned similar complaints in other threads) so you need to watch out for that. Good luck.

[sbk007]

Same stuff..so far no issues, but 4 more to go. The dr I use said the best results come from the 7 day cycle(higher percent of response), and the injection was around longer than the IV but his experience his patients tolerate the IV better. Personally those IVs aren't that bad but after a day or 2 you get tired of getting poked. Today they used a vein I never knew I had :). By my wrist.I didn't like it..

[billyb]

When will they pull blood again ?

[Peachy]

Am happy to read posts on Vidaza. Husband will start in Sept. I didn't realize there are shots and IV, so will check this out with the Doc. Knowing some of the reactions will help me prepare to some extent (I hope). Right now fighting fever and complete body aches that appeared out of the blue. Wishing all of you the best. Peachy

[sbk007]

When will they pull blood again ?

As far as I know a week from today. Cycle ends 0n 5/19, have an apt w/ my heme on 5/23. I feel good. If I start feeling weak or lousy then they'll probably take blood. Keeping fingers crossed I continue to tolerate this as well as I have. Thanks for the well wishes! on my way for round 4.

Round 4 cycle 1 is in the books. No problems yet, 3 to go. It takes around 30 minutes for the infusion. It can take longer waiting for the pharmacy to send the Meds up to infusion. Since each Vidaza treatment and many chemos cost thousands of $$, they wait till you get there to make it, so depending on how busy the pharmacy dept is making these concoctions my experience is any where from 1/2 hour to an hour. If they prepare it beforehand and people cancel they end up throwing the drug away, hence they don't cook it up ahead of time. I believe Vidaza costs 3k+ per day so for a 7 day cycle that's 22,000, I think Dacogen is more expensive like 50k for a 5 day sprint. I'd much rather skip the treatment and get a BMW or similar really nice car, maybe a house even but it don't work that way...

[billyb]

Im glad things are going well, they dont like to premix cauce it has to be used in a certain time and has to be adjusted for different reasons....you should start your own thread incase whoever started this one desides to deleate it, all your info on this thread could be lost

[sbk007]

Thanks Billyb.

[sbk007]

Today was quick, they cooked up the Vidaza in 15 minutes so it was a 45 minute deal. Day 5 was uneventful as well. thankfully. Still early in the game but I'm feeling good and except for the inconvenience of having the treatment It hasn't stopped me from going about my day as I normally would.

[sbk007]

started 5/23/13 ended 5/29/13. No problems or side effects from the treatments that I can feel.
Had blood pulled today 5/23/13, 4 days after cycle 1.
WBC is now 3.9 it was 5, plates 110,000 it was 130k, and HGB 7.7 it was 8.1. Doc was happy(tolerated well & no WBC booster or transfusion needed and will pull blood next week 5/30/13.

[may34]

My dad has MDS as well. He was diagnosed in 2011 and received a BMT May of 2012. A year after his release from the hospital he still has monthly visits to the University for testing. He tells me he will have to get testing for the rest of his life. As his only child and he my only parent, it is difficult to continue to be strong and positive; treatment does not end with chemo or a BMT. He could pass at any time and we don't know when/if he will be cured. I am not trying to be a debbie downer, just realistic with my personal struggle with this disease. Has anyone found a group or therapy to be beneficial in dealing with emotional stress of this disease and treatment?

Thanks

[Neil Cuadra]

may34,

Even if your dad has followup tests (for years to come) it doesn't mean he's not cured or he's not done with treatment. Are there still signs of MDS or are they just monitoring his blood counts and bone marrow to make sure they are OK?

Has he experienced graft-vs-host disease (GvHD)? Perhaps that's what they're monitoring.

MDS treatment (before, during, and after) is indeed stressful on family members. You can look for support online at sites like this. You can join a local support group; see the Communities of Hope list (http://www.aamds.org/support-and-community/communities-of-hope) or our Support Groups forum or post in our Your Local Area forum to seek out others. You can find someone to talk to by phone via the AA&MDSIF Peer Support Network (http://www.aamds.org/node/142). And you can check with your hospital since they may offer referrals to local support groups. You don't have to limit yourself to groups focused on MDS; you may get support that's just as good from groups that help families deal with leukemia and other cancers.

[billyb]

May.... Your not being a Debbie Downer, I think a lot of poeple on forums that have been around awhile try to keep things in perspective.... To keep a positive outlook on things so it can give people hope and insight to what thier about to experience, and as time goes on, each individule can see what the furture holds for them and thier loveones, at somepoint in our journeys we have to understand these are the cards we have been delt, and we do whatever it takes to overcome the fear, anger, lonelyness, confussion, bitterness and so on to have a peaceful and fullfilling life. Somtimes it seems as if things just ar'nt getting any better....But if you give up hope they will never get better, sometimes all you can do is just hang on, and after a little bit of a rough ride things will smooth out, Ive been married 11 years, my wife and I have been dealing with some kind of cancer for 6 of those years, you want to talk about what did we do to deserve this...We have been there, but we chose not to stay there, we make it work when we dont want to, go to treatment when we dont feel like it, and so on, we dont give up... no matter what......Love and Prayers....Billy and Tina

[JIMMYG]

My dad is 64, we were told he has MDS in jan 2013 he is on vidaza, he is handling vidaza treatment very well. He is put on a 6 cycle treatment which occurs once a month for a 7 day period he felt a little sick at first but overal has handled the treatment well. He is going for the 5th cycle this coming Monday, he has had blood transfusions during the treatment also I would say around 4 since jan till now. His blasts and red cells have come down not normal but much better then before the treatment of vidaza. Also he is living ok he goes to work does pretty much what he's always done and is living the same as he was 2 years ago. He has changed his diet and is eatting much more healthier then before.

He is high risk MDS and with the treatment working well and his blood count getting better, we actually got put on the bone marrow transplant list last month. We are East Indian so we were advised finding a match is rare for Asian people, (as my dad has no brothers or sisters). We received a call that a match has been found last week and me and my family along with my dad attended a meeting in TORONTO CANADA AT PRINCESS MARGRET HOSPITAL with the bone marrow team. They meeting had a lot of information and had many doctors we were told they found 3 matches for him and they are all 9/10 which is good but not a 10/10 also we were advised of the side effects the procedure his long hospital stay etc etc.. BUT THE MOST SHOCKING THING IS THEY TOLD US HE HAS A 20-30% survival chance if he gets the transplant ??? Due to his age health and many other factors.

My question is why would they even call us to come to this transplant meeting?
How long can my dad just stay on vidaza?
Should he go for the transplant? As odds have been against us the whole time during MDS since JAN 2013
If this MDS TURNS INTO ACUTE LUKEMIA HOW LONG DOES MY DAD HAVE?
Has anyone recovered from acute LUKEMIA ?
I'm really worried and scared for my mom and dad I just don't know what to do?

If anyone wants to know about my experience or my dads please feel free to call me at 416-454-1116 Jimmy

[sbk007]

There's a member on here still posting that had an 8/10 match with the same odds, they figured 20-30 % was better than 0%. That poster is still posting.. Keep in mind none of these SCT's have high odds
One day I most probably will have to make the same decision, and after reading the many success stories on here I have to say my confidence level is much higher than it was and the decision will be a lot easier.
Yes, people have had SCT when MDL transformed to AML and are here to talk about it. The Vidaza question is one for the transplant team but after a while it stops working. However, the fact that he had this treatment could be beneficial and increase his odds for the SCT.
The best you can do for your parents is to be supportive and ask the questions they might not think to ask. I'm sure you'll get some better answers from the more savvy members but hope this helps in the meantime.

[SLB]

Hi.. yes I had an 8/10 transplant on the 6th of march this year so today I am day + 89. I haven't had a bone marrow biopsy yet (scheduled for 2 weeks time) but so far my blood counts show good things. My platelets & white cells have been in normal range since about day +30 however my red cells are still trying to convert blood types so I am getting tranfusions about every 2 weeks. I have had a little gvhd but quickly under control with steroids (which they are still tapering off).

I had MDS and did 8 rounds of vidaza and probably for first 4-5 rounds my blood counts improved but it didn't last & I transformed to AML. So went through 2 rounds of induction chem prior to transplant. My doctors spoke of it being a risk thing.. when at first they could only find an 8/10 match, they said the risk of undergoing transplant was higher than staying on vidaza (however if they had found a 10/10 they would of gone straight to transplant) they were hoping vidaza would give them more time for a perfect match to come along. Once I transformed to AML the risk balance changed & transplant was really my only choice. In hindsight, I probably should of gone to transplant straight up because by the time I had my transplant, 2 rounds of chemo , infections and many many transfusions later had left me in a less than ideal state to face that challenge!

It is a hard decision because you just can't tell how long vidaza will work for and when it stops working it can happen fast. And of course the healthier you are leading into transplant certainly helps! The statistics I was told were 40% are cured (some with gvhd issues), 40% relapse & 20% don't make it through transplant.. they later told me 20-30% don't make it but that could be because I was less than healthy going in. I did say to the doctors at least I was younger but they said that really wasn't a factor. The whole thing was definitely tough but I am thankful I have made it this far. I have stayed out of hospital since day +22 just going twice a week for appointments (touch wood :)).

Not sure if any of that helps but good luck.. it certainly a tough decision. I just heard last night that one fellow Australian forum member didn't make it and my heart goes out to his family. Sharnie.

[Birgitta-A]

Congratulations Sharnie!!!
Kind regards
Birgitta-A

[sbk007]

started 5/13/13 ended 5/19/13. No problems or side effects from the treatments that I can feel.
Had blood pulled today 5/23/13, 4 days after cycle 1.
WBC is now 3.9 it was 5, plates 110,000 it was 130k, and HGB 7.7 it was 8.1. Doc was happy(tolerated well & no WBC booster or transfusion needed and will pull blood next week 5/30/13.

Was supposed to start cycle 2 on 6/10/2013.
Doc pulled blood today 6/6 - WBC fell to 2.5, plates 108k,and HGB 7.5

Doc wants to wait a week for the WBC to come up but is encouraged by the stability of the RBC and Platelets before starting and now.. If WBC don't come up then I start cycle 2 6/17/2013 and get a neuprogen shot after to boost WBC. I was disappointed but he says its common..He could just give me the neuprogen and go as scheduled but says a week wont make a difference this is how he wants to play it. Frustrating..

[sbk007]

Doc pulled my bloods today. After looking at the counts he asked the technician to pull my blood again, didn't trust the results as my HGB was 7.5, plates 108, WBC 2.5 last week 6/6.
HGB is now 10.1, platelets 230k,and WBC back up to 3.2. Doc was very happy. Said its rare to get a response after the first round but it happens.
Not sure about the neulesta booster as the WBC''s seem to be coming up to pre-vidaza levels of 5 on their own. Set to begin round 2 6/17. Waiting the extra week turned out to be a good call.

[Birgitta-A]

Hi sbk007,
Wonderful with such a positive response!
Kind regards
Birgitta-A

[sbk007]

Thanks Birgitta for all the info you provide us and the well wishes.