Somewhat concerned

[Rorkesdrift]

I am 76 and had smouldering Mds for 3 years before treatment became necessary.Ihave been given azatididine and was due to start the 4th 7day course of injections into the belly.This had to be aborted as my white blood cell count was zero.The platelet count has varied between 18 and 66.Haemoglobin has hovered around 100.Despite the fact that I remain fairly strong respecting hand shovelling heavy wet snow,looking after housework and weight training,i am worried about bouncing back so I can resume my chemo treatments.I have a wife in fragile health and she needs my strength and help.We can't rely on our children as they live far away in Asia.

[Neil Cuadra]

Rorkesdrift,

You have good reason to be concerned about your low counts. The question is what you can do about it.

Did the azacitidine (Vidaza) treatments seem to be working during the previous rounds?

Did your doctor indicate whether your azacitidine treatment has to be given up for good, or merely postponed? Doctors have the flexibility to change the schedule when it makes sense.

[Rorkesdrift]

The vidaza has not produced a uniform beneficial effect as yet.My doctor indicates that it is too early for this to occur. Today,the neutrophils were .9 and I was started on the 4th course of 7 day treatment.I gather from the doctor that my age and the presence of fibrosis (perhaps 15 percent)make any remission unlikely.I have had 3 bone biopsies and all have been dry taps.i guess this fact makes it a little harder for the doctor to gain a full picture.My poor wife is very distraught.I seem to pick up somewhat a few days after the monthly treatment ends when am able to shovel the snow and do some physical things.Then we are able to go out to shows and concerts etc.

[slip up 2]

Rorkesdrift....
Vidaza for some takes time to work....
Where in Canada and what Hospital are you going to for treatment.

There has been a new drug for fibrosis approved in Canada called JAKAVI.

It is not unusual for all the counts to fall within 10 days after the last Vidaza injection, and then they start to go up.

Are you having any redness at the injection sites.

Get your chemo nurse to get in touch with Homecare, they will send someone to come and shovel your snow.

[Rorkesdrift]

I am in Aurora,Ontario and I go Southlake Hospital about 3 miles from home.
I have had redness at the injection site but it does'nt really bother me.Thanks for the tip about snow shovelling.It is only when I am being treated and a few days later that I can't handle it.My doctor hasn't mentioned as yet a need for Jakavi.But,that is not to say that it might lie in the future. I am trying (as are we all) to keep a stiff upper lip and make the best of the good days I have left.My son is coming back from Korea in October and we are looking forward to that because he is such a loving person.
Be well yourself and thanks!

[Birgitta-A]

Hi Rorkesdrift,
You know when you are treated with Vidaza you need supportive therapy for example Neupogen when your neutrophils are so low. Look out for all kinds of infections!

Your platelets are sometimes very low too - remember that many drugs for example painkillers can decrease the platelets.

Jakafi or Jakavi is a drug for patients with the disease Myelofibrosis not for MDS.
Kind regards
Birgitta-A
73 yo, very severe fibrosis since dx. Yesterday my dr got the 6th BMB - only dry tap as usual. Positive results from Thalidomide + Prednisone during 32 months. Now trying a higher dose of Thalidomide.

[Rorkesdrift]

Thanks for the tip about neutrophils.Thus far I have not experienced any
infections.However this is probably luck and perhaps due to the fact that I am careful to avoid large crowds in enclosed space,rarely eat out and frequently wash my hands.However,I shall mention Neupogen to my doctor.
My platelets are low but not because of painkillers.I do have Cyklokapron
in case of sudden bleeding if platelets get below 10 This is an effective coagulant used when operating on haemophiliacs.I have heard that Thalidomide is effective with fibrosis.I wish you the very best success with this treatment.
Be well,
Rorkesdrift

[billyb]

Rork, my wife is on decitibane and supportive care we are on Amicor for platelets, trying to find a match for platelets is hard due to a lot of back log here so sometimes we take the soup, we have never missed treatments for blood work, our averages are WBC: 1.2 / Platelets : 4 / Neutrifils : 3%, Decitibane works good for us at controling the blasts, our problem is we have damaged bone marrow, so its hard to get the counts to rise, it sounds to me your doing everything acording to plan ( washing hands, avoiding crouds, ect ) when needed....keep up the good work, I know it can get fustrating, best of luck and praying for you.....Billy