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Peter BussParticipant
Hi Alma, I am currently in my 20th cycle and blood and platelet levels, whilst below “Normal Range” and holding steady. Can be a bit debilitating, but my outlook is that it is better than the alternative. I am 71 so hope I can make to your age, but I doubt it.
All the best
Kind regards
PeterPeter BussParticipantCheers Nancee, Love your attitude/outlook, I hope I can gain the strength that you have to push on.
Kind regards
PeterPeter BussParticipantHello John. 71st for me next Tuesday (9th) hope I can make it 75 like you and hopefully beyond. I, like you am trying to continue to do the things I enjoy, taking the boat out for a fish, taking grand children to basketball and football training, picking them up from school etc.
Best wishes
PeterPeter BussParticipantThanks Dale, look forward to your advise and will discuss with my nurse in two hours when she visits.
Kind regards
PeterPeter BussParticipantHi Misty,
I am currently on my 20th cycle of Vidaza and my numbers are holding, not improving much, but not declining either. Some nausea but controlled with Zofram taken 1 hour prior to injection, diarrhoea but controlled with Gastro Stop, and redness, slight pain and blistering around injection site which I put up with but exploring a few options for this. I have 14 injections over a seven day cycle so one week on and three weeks off. I am 71 yo male living in Australia and interested that a lot of you folk in USA are talking of transfusions, which has not been discussed with me. Will talk to my Oncologist at next appointment later this month. Definitely worth a try Misty as side effects are manageable.
Kind regards
PeterPeter BussParticipantThanks Kathy.
Kind regards
PeterPeter BussParticipantKathy, Dale & Jim
Thanks for suggestions,
Kathy, I will try your mixture and see how it goes.
Dale, did not know that we could use a port, will ask my nurse when I see her tomorrow.
Jim, I suggested that to my nurse and was told either the stomach or thigh, as I still keep myself reasonably fit, injections into muscle of thigh is more painful than fat of stomach.
Thanks guys, will discuss all with my nurse tomorrow and let you know.
My kind regards
PeterPeter BussParticipantVishal, I am living in Australia and have MDS, I am much older than you but we are both dealing with the same issue. I will send you a friend request to your facebook page, and perhaps easier to chat there. We can discuss current world cup of cricket in which I think our two countries may play off in the final.
Kind regards
Peter BussPeter BussParticipantHello, I am a 71 yo male living in Australia and have been on the Vidaza treatment for around 20 months, started current cycle yesterday, and it is working OK for me albeit that most results from my latest Lab report are below “Normal Range. My issue is that the 14 injections over 7 days leaves me feeling very sore. Was wondering what others might use to ease this discomfort, was thinking of trying Marijuana oil, but illegal in the land of Aus, without Doctors prescription.
Kind regards
PeterPeter BussParticipantHi Carole,
You should get other opinions of course, but the Vidaza injections, whilst debilitating (pain and discomfort from 14 injections to the stomach in 7 days) is working for me. Speaking with my nurse this morning, she advised me of one of her patients that has been on the treatment for just on 7 years and is around our age. I have to plan my time more nowadays as once on the treatment, cutting the lawns at home, going on fishing trips, and any physical activity, can be difficult for about 2 weeks after start of cycle. I asked my Oncologist about the Dacogen treatment yesterday, and she could not find any reference to it and thinks it may be similar to the Vidaza that I am on. Maybe talk to your oncologist about Vidaza.
Kind regards
PeterPeter BussParticipantHi Carole, I am 71yo male living in Adelaide South Australia. I was diagnosed with MDS some 3 years ago and yesterday started my 20th (4 weekly) cycle of Vidaza (Azacitidine) injections, 2 per day over next 7 days. My report yesterday had my Platelet count at 68 which is about where mine usually is, Haemoglobin at 12.9 and WCC at 2.24, all being lower than normal range. I to am apprehensive of what the future holds, but I think we just have to embrace where we are in life and keep battling on. I hope you have loving family and friends around you as I have.
My kind regards
Peter -
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