When to stop Vidaza?

[Paolo D.]

Hello everybody, I'm a new member from Italy and I'm not an expert of medical stuff, so please apologize my grammar mistakes and medical inaccuracies.

My mother (70yrs) was diagnosed with AREB-2 (15-20% blasts) in March 2010, was given a 30% chance to survive over 2010, and began Vidaza in May 2010.

Throughout the treatment, she has been always low on Hgb (highest 10.5 after transfusion, lowest 7), low on platelets (40-60k), low on Wbc and Rbc (despite ongoing supportive treatment with Granocyte and Eprex). She has always been very weak, covered with bruises all around her body, prone to infections, and has suffered severe Vidaza’s side-effects on the site of injections (bruise, rush, swelling and much pain on her arms).

After the 4th cycle she had a BMB which showed a little improvement (blasts 15%), and after the 6th cycle a further BMB showed the same situation as after the 4th cycle.

Now doctors say they are going to run the last cycle (the 8th) in December (next Monday), and then stop Vidaza for a long while. They say they want to see how my mother “behaves” without Vidaza, just with supportive treatment (transfusions etc) when needed. If things go bad (i.e. acute leukaemia) they will treat it accordingly (other chemio?); if things remain stable for something like one year, they will re-consider another go with Vidaza.

After this long (I’m sorry) introduction, my questions are:
1) when can you say that Vidaza is “not working”? (my mother’s marrow is the same as before starting Vidaza, she’s still transfusion-dependant: is that enough to quit Vidaza like that?)
2) has anyone heard of a similar use (stop & see in one year) of Vidaza, or should I fear that doctors have other reasons to suggest this approach? (I know how expensive Vidaza is, and in Italy it is supplied for free by national health system)
3) in case I convince myself and the doctors to keep on going with Vidaza, does anyone have any hint to ease the pain on the site of injections? (doctors say that Vidaza can be injected only on arms or legs: they once tried with legs, and it was even worse than on arms)

Any answer, suggestion or just sharing of experience will be, of course, very welcome by a son who would try everything to help his mother.
Thanks in advance,
Paolo

[Birgitta-A]

Hi Paolo,
I think your mother is in good hands - her treatment is the same as in the best clinics. Many clinics stop Vidaza after 6 months but research shows that some patients respond after 9 month or still later. Good that she is getting granulocyt stimulating injections like Neupogen.

1. Your mother has responded - otherwise she should have had lower counts and moore blasts.

2. Nobody knows when to stop Vidaza but there are several abstracts in the last American Hematology Society Conference (ASH 2010) reporting that patients that have responded to Vidaza get worse when Vidaza no longer is working but Vidaza has not failed in your mother.

3. Vidaza is often given subcutaneous in the abdomen too. Some patients report good effect of Primrose oil for bruises after Vidaza injections.

You know Vidaza (azacitidine) can be given in the veins and many patients get a port-a-cath (a small titan device planted under the skin under the clavicula with connection to a big vein) for transfusions and other treatments like Vidaza. Look at page 2 http://www.rxlist.com/vidaza-drug.htm

Kind regards
Birgitta-A
71 yo, dx MDS Interm-1 May 2006, transfusion dependent from dx, Desferal and Exjade for iron overload, Neupogen 3 injections/week for low white blood cells, started Thalidomide + Prednisone June 2010 with good response - last transfusion 10th Sept platelets increased from 22 to 78.

[Paolo D.]

Hi Brigitte,
thanks a lot for your kind and useful answer.
My only doubt is whether I should try to convince the doctors to continue Vidaza treatment, or whether I should follow their suggestion and stop Vidaza for a while. I guess there is no certain answer, so I actually don't know what to do next, as it usually happens with this complex disease.
Take care,
kind regards
Paolo

[Gokcen]

Stop or go on with vidaza!??

My mother's hmg level deacreased from 10 to 7.5
Her PLT levels increased to 190 now, it s same as what was it in december...
wbc counts very low in the last 10 weeks and still.. Neupogen didnt help!

What is next? Which medicine ? revlimid? Dacogen? Thalimode?

[freedom99]

Hi Paola;
In addition to the excellent comments from Birgitta-A I also want to add to the support of having a Port for transfusions and in this case for infusing Vidaza. It's an awesome piece of technology that takes so much grief away from transfusions.
When using the port one may consider using a cream called Emla Cream(Lidocaine 2.5% and Prilocaine 2.5%) A topical Anesthetic for Dermal Analgesia. This cream is local anesthetic which is put on the port entry an hour before the transfusion. One can cover it with a piece of Saran Wrap fastened with medical tape. This takes away any discomfort when the needle device is inserted into the port.
One also has to make sure that when in a situation of an emergency transfustion at your emergency department that the nurse who is doing the transfusion is familiar with using the port. There are certain procedures that should not be carried out unless it is done by one who knows what they are doing.
The Primrose oil is definately a awesome anwer for the swellings around the Vidaz injection sites. This is put on after the injection. My wife usually had two injections each time for the seven day cycle which would be 14 injections. Each time the injection site would be alternated between arms or the abdomen. The advantage of injections is that they only took about 15 minutes to complete each day.

[kris]

Most of the Vidaza research that has shown the most response and promise was with the sq injections vs the intravenous route. yes, the boli are troublesome and painful to the reciepient but the results are promising.
bes t to everyone.