MDS Starting Vidaza: What to expect?

[roger]

I got a repreive and will start Vidaza next Monday, the 9th. I don't mind telling you both my stomach and my mind have been places I'm not comfortable with. Nonetheless I think I now have come to grips with reality and am ready to begin my 7 day session, 21 days off, come Monday.

I take Procrit shots in the stomach. Are the Vidaza shots similar or am I ready for a new and different experience? I like similarity.

Also my Onc told me after my shot I'd pick up some nusea meds. Is he not familar with the proceedure, that is I will get meds by IV? Anyone receive nausea meds orally? I care not as long as it works.

So nice to be able to come here.

I wish us all confort and success as we travel along the path.

Roger
PS I'm not going to preview and spell check casue last time I did this I lost the message.

[roger]

3rd question...I gve myself pricrit shots and I sometimes get small bruses on my stomach...no biggie. I was told with Vidaza I should expect huge bruises. Has that been the experience of many and is there something you can suggest to sooth those areas

[edo288]

Hey Roger:

Don't worry needlessly about reaction to Vidaza. I'm currently taking Vidaza treatments at the VA in Fayetteville, Arkansas with 7 others receiving the same treatment. All are tolerating it well. Only one person is not responding to the drug.

For the details of my experience see my experience with Vidaza.

I took three of the double-shots of Vidaza in the upper arm and two in the stomach. One of the double stomach shots turned into a large, knotted bruse. From now on I intend to take all shots in the upper arm.

[roger]

Thanks Ed for the encouraging words. I needed that about this time.

The arm huh? I'm a wee bit on the skinny side but will ask them about that.

I read somewhere that people suggest the use of "Evening Primrose" that is rubbed on the stomach to lesson the brusing. Have you heard of it used in this manner?

I'll share my reaction to my first injection come Monday

Again thanks
Roger

[roger]

For me the apprehension was the worst. I had thouhgts of long needles going deep in my stomach. Hey what did I know!?

While at the chemo clinic they explained what the procedure would be. I was given two tabs of anti-nausea meds then waited about 30 minutes. Tree shots...now that was a surprise and they didn't go in my stomach but in my arm. The plan is Tue shot #2in the other arm, Wed the stomach. From there your guess is as good as mine.

I'll keep you all posted on my progress. Continued prayers to all of us.

I have no clue what my numbers are and don't want to. The doc took me off Procrit so I assume that is a good sign.

[Vera W]

Hi Roger, I almost branched out to other areas of my body but I was able to keep them all on my stomach. You have to keep the shots about one inch from each other and sometimes I had to go toward my hip . My nurses experimented on giving me the shots at different angles etc and it all ended up about the same in the end. Sometimes I got nasty hematomas but they go away and it is really no big deal. We tried different cortisone creams but I really can't recommend anything. I would suggest lubricating with some kind of moisturizer because it will dry the skin. No one mentioned that it could really constipate you and I was miserable my first cycle. so stay on top of that, drink lots of water and rest when your body tells you to.

[roger]

Thanks Vera for the reply. I was forewarned about liquids so hopefully I will be able to avoid the big C. I also enjoy having "Sjogren Sydrome" which is where my body does not produce tears nor saliva so for me if they could hook me up to a hydrant it would make my life easier...thus i drink round the clock.

Today will be injection set 2 and hope it goes as well as yesterday. So far, so good

Someone suggested i use Primrose oil to lightly rub over the injection sites to avoid problems. I am trying it and will let you know if it helps.

Again thanks and good luck

[Iris/Ollie]

I am new to this so beg your patience. I have read your blog with great interest. My husband is 92 and has dx of MDS for about two years. His oncologist has offerd Vidaza in the past and now again. My husband is is otherwise good health. The major concern has always been quality of his life. He does not even know what it is like to be nauseated. Had recent updated bone marrow and will get results on 20th. Would really like to hear what side effects anyone has had with the Vidaza . He has also recently started Aranesp and will see if it improves RBC. Thank you in advance and wish each of you well. Iris

[edo288]

Hello Iris:

Roger, JerryO and I are just starting Vidaza treatments. Roger is 66, I'm 70 and Jerry is 73. I have no experience in what it is like to be 90+, but it is a triumph just to reach that age.

If you have an oncologist you trust and he has experience with patience in there 90's, take his recommendation. You might consider starting a new thread on this forum titled something like "Experience with Vidaza treatment in your 90's?". If you have any trouble with starting a new thread, check with Neil Cuadra -- he's generous with his help.

In other words, I strongly advise you to become your own medical advocate and educate yourself. Doctors are like any other profession, the exceptional ones are rare and most are just plodding along. You must learn enough to be able to qualify you doctor's opinions.

I get my treatment at the Veterans Administration; so, I don't get to pick my doctors. In the total 10 minutes I've spent with my oncologist, he stated that Vidaza would extend my quality-of-life six months to one year. Then again, he has the bedside manner of Dracula!

Best of luck in your decisions. Keep in touch.

Kindest regards,

[Mary in Alabama]

Iris and Ollie,
I am greatly encouraged by Ollie at 92 with MDS. My husband was dx Sept 09. He is only in the beginning stages. I have read as many of the postings on this website and it has educated me SOME. I have read on line all I could find and I still look for different websites. I almost sent you a private message by thought others may need to see all postings. My husband is 88 and just stopped working last summer 2008. He has worked all his life and misses it greatly. Is Ollie able to do anything around the house? His Hg is 12.1 now. He has more bloodwork on Dec. 7th. I got the nurse to give me copies of his bloodwork and BMB(bone marrow biopsy. The doctor is not treating him all now. Wait and watch.
Thanks for posting.

Ed,
your postings have helped me also. Everyone please keep posting with your numbers and treatments, so that I will at least be aware of them when we go to the dr. again.
Mary in Alabama

[roger]

I've been using it after each Vidaza shot and so far so good. I can't tell you yet if its any better than a moisturer but will stay on top of it and let you know as I near the end of the 7-day injections.

So far my shots have been in the arms. Today will be in the stomach and I suppose this will be the real test.

Evening Primrose Oil can be purchased at most health food stores. Comes in capsole form and I cut the tip and pour it on the injection site and rub very gently

[Vera W]

Are you getting any lesions or hemotomas on your arm?

[roger]

Nothing but a little pink in the area. Same for the three areas they shot me in the stomach. I'm assuming that is good.

I have been gently rubbing on the Evening Primrose oil after the shots so perhaps that is what is helping.

Mon-Thru Friday went well. Come Saturaday and today given the choice i could have slept through the weekend. Is this normal?

Also I've been meaning to ask you, since your blasts dropped from 12% to a low of 2% why was there a need for you to have a transplant. And what kind of transplant did you have and has it helped.

Take good cdare of yourself

[roger]

Cycle 1 went very well. Now that I'm familair with the routine I'm more relaxed but...should i expect how I feel to change as I go through further cycles or will things remain as they have been. Little side effects during cycle 1 except the usual constipation and tiredness after the first 3 or 4 days.

Wish me luck! As I do you

[launch]

Roger,
One thing we've learned in my husband receiving the Vidaza Injections. They should only inject with the 1 inch needles. Whenever they use a 1/2 inch needle, the vidaza is too close to the skin surface and causes a lot of redness. One of the Nurses told my husband not to allow them to use a 1/2 inch needle ever again. Perhaps 1 out of 10 times the needle brought to his table is a 1/2 inch and my husband tells them to get a 1 inch needle instead. They do without question...

Hope this helps... Cindy

[roger]

Thanks for the suggesttion but to be honest with you I don't know what size the needle that have been using on me is. I turn the other way. So far no rash but I'll ask when I begin again next week.

[roger]

My Vidaza treatments were delayed one week due to cough and antiboitics. Yestrrday I began cycle 2. Today I had an appt with the Onch nurse whom i found is often more informative than the doc. This is what she told me and I'd like confirmation from those who heard the same...or the contrary.

1. Not all MDS will result in Leukemia
2. Vidaza has 30-40% chance of working
3. The fact that you have MDS is not a death sentence
4. Worse senario is I would be on tranfusions when ncessary
5. Blood counts often get worse before better with Vidaza and you have to go on at least 6 cycle before anyone can determine if its working.
6. Most doctors will not stop the cycles unless they arfe absolutely certain they are not working.
7. Oh and one other...for those beginners such as myself...Vidaza, thank God usually does not have side effects one has to be worried about. Constipation, sure but not a major problem...drink lots of water and stool softeners. At worse, Milk of Magneasia which often works best.

The bottle will say not to be used beyond 5 days. Nurse said twice a week will help lots and I may use regularly if needed. Nothing to worry about.

God bless all of us during this Christams Holiday. We have lots to be thankful for

[Birgitta-A]

Hi Roger,
Here are some confirmations (my personal) about the info you got about MDS:
1. All of us won't get Leukemia. Infections and bleedings due to low counts are common.
2. Most studies of Vidaza show that a little more than 50% of the patients get some hematological improvement but now I read results from a study where 72% of the patients were improved or had stable disease. The patients had got Vidaza every day during 7 days of a 28 days cycle (Complete response 22%, Partial response 11%, Marrow Complete response 4%, Stable disease 15%, Hematological response 20%):
http://ash.confex.com/ash/2009/webpr...aper21649.html
3. MDS is not a death sentence.
4. Most MDS patients get transfusions and that is not something terrible – I have been transfusion dependent from dx and think that treatment is OK.
5. Blood counts often get worse before getting better with Vidaza. In this study they report that “The median number of cycles to first response was three, and 90% of responses were seen by cycle 6.”
http://www.ncbi.nlm.nih.gov/pubmed/1...m&ordinalpos=4
6. Most doctors continue the treatment till at least 6 cycles.
7. As far as I understand the worst adverse effects are the low counts - it is dangerous to have very low white blood cells and that adverse reaction should be treated with Neupogen or similar drugs more often than they do at many clinics.

Good luck with the treatment !
Kind regards
Birgitta-A

[RogerJ]

Hello to Everyone, My name is RogerJ.
I found out in the hospital after they gave me 8 pints of blood and had a bone marrow biospy that I have MDS. I am 62 yeras old, young compared to some of you. They started me on Vidaza Monday(Dec.14,2009) by IV Infusion with a nausea drug at the start. I also have Compazine Tablets for home use for nausea. I entered the hospital and stayed 8 days with a Hg count at 5.0 and left with 10.8 Hg Blood count. They did a Bone Marrow Biospy and thats when MDS was detected. They are doing 5 days of Vidaza and 21 days off and repeat the cycle every month. The booklet from Vidaza says to do 7 days then 21 days off. What do you think about my cycle of only 5 day of Vidaza?

[Birgitta-A]

Hi RogerJ,
Here is a study about 3 different dosing schedules of Vidaza (Azacitidine). The overall treatment response rates varied according to dosing: 58% in the 5 days group and 74% in the 7 days group.
http://ash.confex.com/ash/2009/webpr...aper21649.html

I don’t really understand how they get the different results but I suppose that the researchers know better than I do how to add the figures .

Then I have seen older studies where they found better results with 5 days dosing.
Kind regards
Birgitta-A
70 yo, dx MDS Interm-1 May 2006, transfusion dependent, Neupogen for low white blood cells 2 injections/week, Desferal for iron overload

[Marais]

Just finished the second weekly cycle of Vidaza. So far no side effects for which I am grateful.

I am gathering from what I read that I should expect at least four cycles before another bone marrow biopsy to see where we are.

So far I feel fatigue a lot but am able to still work. Fortunately I have a wonderful boss who allows me to come and go as I please. I am an account and have so far managed to keep up with little stress.

I don't deal well with the unknown. I guess I could deal much better if I had a time table: 6 months of Vidaza before progressing to AML and then life expectancy of 2 years. With that sort of timetable (as shocking as it might be), I could dispose of my home and other assets, do some farewell travels, etc. I am single and live alone but still don't want to be a burden on anyone (even non family) having to settle my estate.

Any suggestions on how to "take one day at a time" and not worry so much about if and when the final chapter might occur?

Thanks,

John

[Birgitta-A]

Hi John,
You know "syndrome" means several clinically recognizable features, signs, symptoms or characteristics that often occur together, so that the presence of one feature alerts the physician to the presence of the others. We don't have the same disease and our futures are very different.

That's why it is impossible to make a time table. We hope you will respond to Vidaza and that your disease never will progress to AML!

As many members have written before the prognosis today is much better for all patients than 1997 when some of the prognosis tables were published. We have better drugs and better supportive therapy. Patients with other types of blood cancer like chronic myeloic leukemia have got very good drugs that totally has changed the patients future.

I have seen reports about combination of drugs (Vidaza and Zolinza) that have good effect in more that 80% of the patients (very small study). Probably this type of combinations will show better treatment results.
Kins regards
Birgitta-A

[crpa]

Hi everyone;

My husband has started a Vidaza treatment this week, he is now on the 3 day of treatments and is experiencing hiccups.
Has anyone had this problem?
He is given the drug decadron before shots.
Any ideas would be appreciated.
Regards,CR

[Ralph S]

Hello all. Just found this site this evening and want to let you know how Vidaza is working for me. I just finished my 31st month treatment today. Still in remission. I had a bit of nausea after the third month but doctor switched me to Zofran. No nausea since. Only reaction is red spots where I get the injections. I get injections for 5 days and then off for 3 weeks. Vidaza is all I receive and have had no transfusions so far. I am 73 years old and still very active.

[Birgitta-A]

Congratulations Ralph! 31 months is really a very good response.
Kind regards
Birgitta-A
73 yo, dx MDS Interm-1 2006. Thalidomide + Prednisone since June 2010 but now slowly decresing HGB and neutrophils.