Vidaza Treatment - the good news

Please share your experience of using this particular MDS drug - sometimes referred to as "chemotherapy". If you have general questions about azacitidine, please check our website, our Patient Handbook or call us. For personal clinical queries - always discuss with your haematologist or nurse.

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davidmiller

Vidaza Treatment - the good news

Post by davidmiller » 13 May 2012 16:59

I am a 78 year-old retired, widower with no history of illness, non-smoker, low blood pressure, low cholesterol, low PSA, no medication, healthy life-style etc.

In March 2011 I woke up one morning with a swollen, sore, inflamed leg which I suspected to be a DVT and went to my local hospital A&E who took a blood sample and injected Fragmin. An ultra –sound scan one week later showed that it was not a DVT but they told me to mention to my GP that my blood test showed some abnormalities.

I had further blood tests and in July 2011 I was referred to a consultant haematologist who took a bone marrow sample . Three weeks later the results showed that I was suffering from MDS, and my consultant took a further sample to confirm the extent of the damage. In August he confirmed my MDS at level 2.0 on the IPSS Score Table. He recommended that I should undergo treatment with Vidaza. At that point my Hb was 111, white cells 2.0, neutrophils 0.5, platelets 84. My bone marrow contained 5-10% blasts and I had abnormalities of chromosomes 5 and 7.

I then started treatment with Vidaza on Monday 5th September. Initially the protocol was for treatment on Monday to Friday in week 1 followed by the next Monday/Tuesday to complete the 7 day course. This was followed by blood tests on the next three Mondays before starting the 2nd course of treatment on the sixth Monday. However the 2nd and 3rd courses were each delayed by one week as my platelet levels had not recovered sufficiently. This reverted to the normal 5-week cycle in January.

At the end of January the protocol was changed to a 4-week cycle in future. In March after the completion of the 6th cycle of treatment with Vidaza another bone marrow sample was taken. This showed very encouraging results with improvements in all critical indicators, the repair? of one of the damaged chromosomes, the reduction of blasts to 5% and the change in my IPSS score to 1.5. I have since completed the 7th and 8th cycles and I no longer need to have the between-treatments blood tests.

I have never needed blood or platelet transfusions and I have had minimal side-effects, the worst being soreness at the site of the injections. I have never at any time felt ill or even tired and it was therefore frustrating to discover that I had a potentially terminal illness. On the positive side it is very clear that Vidaza is working and the team at my clinic is absolutely first class. I look forward to continuing the treatment and further improvement in my prognosis.

I can strongly recommend the treatment and as I said above it is clearly working for me. My consultant is very enthusiastic and believes that my situation will improve even further by continuing with the treatment.

Best wishes and good luck to everybody
chris
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Re: Vidaza Treatment - the good news

Post by chris » 14 May 2012 10:46

Dear David

I was so pleased to hear how well you have responded to Vidaza treatment and glad that you actually have not suffered any ill effects of either MDS or the treatment, except minimally. How fortunate that it was picked up before you began to feel unwell. My personal guess would be that the initial problem with your leg may have been cellulitis - a painful bacterial skin infection which leads to sore, swollen and inflamed areas - usually in the lower leg -as this seems to be a very common problem with MDS patients who have low neutrophil counts (myself included!)

Also, very interesting to read that Vidaza apears to be able to "repair" damaged chromosomes? I have read in research by Prof Mufti at King's that Vidaza can be very effective in patients with Monosomy 7. Is that the one which has been improved? Let's hope that more gene research will soon be able to predict those patients who will respond well to the drugs on offer to treat MDS.

I take it that your consultant did not have any difficulties in obtaining funding for this treatment for you? In some areas of the country it seems it can still be problematic even though NICE has approved the drug. I was also interested that your consultant actually discussed with you your prognosis on the IPSS risk table as it seems that this is not always discussed - some MDS patients seem never to have heard of this, except by their own research. May I ask if you are having your care at one of the MDS Centres of Excellence as listed elsewhere on this site?

I feel sure your good health and healthy lifestyle will stand you in good stead for the future. Personally, I felt a bit "miffed" (understatement!!) when I got my diagnosis at age 58 as I felt I should be the last person to have a malignant disease, given my good health and blameless lifestyle etc. Also, having been diagnosed at a relatively young age for this disease, the median age at diagnosis being 74, I felt ( and still feel!) seriously short-changed!!

Hoping that you continue to improve your counts on Vidaza. There is another David posting on here who is on Vidaza and also doing well - maybe being called David is another good prognostic factor?!

Best wishes

Chris
Chris.Trustee,Patient Support Ambassador (Essex) (F) Age 73 (2023)).Diagnosed in 2008. CMML-1. Normal red cells, low white cells & platelets, slightly raised monocytes. Enlarged spleen. Not had any treatment - active monitoring 6-monthly.
janetstanford
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Re: Vidaza Treatment - the good news

Post by janetstanford » 14 May 2012 14:25

Hello
Yes very good news indeed having a positive reaction to the drug/no issues will also have helped you along the way long may it continue your doctor seems to be very good at informing you at every step... great he was able to get the funding so quickly :)
long may it continue good luck Janet :)
davidmiller

Re: Vidaza Treatment - the good news

Post by davidmiller » 17 May 2012 11:03

Thanks for your replies. My clinic is at Wexham Park Bucks and as I mentioned in my original note the team there is excellent and is very informative so the patients are able to know what is happening.
David Miller
Karen

Re: Vidaza Treatment - the good news

Post by Karen » 22 May 2012 12:41

Hello David

It's great to hear the good news about your Vidaza treatment.

My Dad will be starting on Vidaza soon. He is heavily transfusion dependant at the moment and we are hoping that the treatment will allieviate this somewhat.

Karen x
chris
Posts: 754
Joined: 01 Dec 2009 21:52
Location: Essex
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Re: Vidaza Treatment - the good news

Post by chris » 05 Jun 2012 11:20

Hi Karen

Just to wish your Dad all the best with his Vidaza treatment. I understand it is a bit of a waiting game and several cycles before any effects are seen but it would be a relief to be able to stop/reduce the transfusions.

Also, just to say well done for doing the Windsor Walk!! It sounds such a successful and fun day and I really do hope to do it next year.

Best wishes

Chris
Chris.Trustee,Patient Support Ambassador (Essex) (F) Age 73 (2023)).Diagnosed in 2008. CMML-1. Normal red cells, low white cells & platelets, slightly raised monocytes. Enlarged spleen. Not had any treatment - active monitoring 6-monthly.
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