Chemo for MDS

[Carole Tirico]

I was diagnosed with MDS 4 years ago. I am now 75 years old. My hemotoligist-oncologist has been running CBC’s every month and just watching the numbers, first it was just platelets which ranged from 49000 to 120000 (mostly 60000 to 70000 during the past 4 years. Now he seems to be watching my ANC for the last 2 years. My ANC counts have been consistently going down – now .4 and my doctor has been giving me neupogen and antiobiotic Levofloxacin 500 mg. He wants to start me on chemotherapy of Dacogen for 5 days each month for approx 6 months. I am really scared and don’t know what to do.

[Peter Buss]

Hi 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

[Carole Tirico]

Hello Peter:

Thank you for your kind words of encouragement. My husband and I are having a hard time accepting this treatment. I am not sure if I should have the chemo or get another opinion on this treatment. I live in New York. I don’t know what will happen if I don’t have the treatment. Will try to be as strong as you and hope the best for you also.
My regards,
Carole

[Peter Buss]

Hi 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
Peter

[Kathy Stermer]

Hi Carole, I just finished my third month of Vidaza and hopeful for some results soon. Am treated by MD at a Center of Excellence in this disease. As a retired nurse who was never trained to give chemo nor wanted any myself am giving it a go as my doctor explained this treatment as low dose stealth chemo without all the side effects of full blown chemo. Side effects have been very manageable so far and counts are beginning to stabilize somewhat so hopefully you have a good doctor who communicates well and you respond to whatever treatment you decide to go with.

[Alma Pancir]

I have to decide whether or not to take the Vidaza or not. I am 86 and my blood levels have been going down fast. Most of the outcomes don’t seem encouraging to me and I am really having a hard time making a decision.Haven’t heard too many success stories.

[Peter Buss]

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
Peter

[Alma Pancir]

Dear Carol: I too live in NY (LI), I’m 86 and was diagnosed in Feb. I am suppose to go on Vidasa on Monday and have to give the doctor a call tomorrow to let her know if I will do it or not. I asked the doctor if she could tell me some success stories. I am apprehensive going into unknown territory. Right now I wouldn’t even suspect that I had any aliment other than my blood tests where my WBC is 1.65. I had a couple of infections which at the time didn’t make the connection. My RBC and Hemoglobin are low and I assume they will drop even further. So I have been praying so hard to the Lord to help me decide.

[Dale Frank]

Alma. I had similar pro/con feelings when I started Vidaza 4 mos ago. I can only say that the side effects have not been as bad as feared. I wish progress on counts was faster but I understand that 4-6 months is usual to see progress. Such a personal choice. All the best.

[Carole Tirico]

Alma
I live on Long Island also – I am starting on Dacogen on Monday also. I am also very apprehensive as to what this will be like. Where do you go for treatment? I go to NSHOA in Patchogue but will be getting the infusions in Riverhead because it is closer. Good luck to you on Monday.

[Alma Pancir]

Carol I am having the Vidaza on Monday at Good Samaritan Hospital in West Islip. I Wish you all of God’s blessings as we go on this journey. Would love to keep in touch with you.

[Carole Tirico]

Alma I would love to keep in touch with you also – I will be thinking of you on Monday – let’s hope these treatments will help us

[Alma Pancir]

Perhaps we’ll meet somewhere along the way to encourage each other.

[Alma Pancir]

Hello Carole: Hope all went well with your chemo. As we are in our second day of treatment, I hope all is well with the side effects. Today was the first bout with diarrhea but hopefully as my body adjusts it will subside.God Bless you.

[Carole Tirico]

Hello Alma

All went well with the chemo – no side effects yet for Monday & Tuesday, hope there won’t be any at all – I can hope anyway. Glad it went well for you except for the diarrhea.

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