Eileen N's Dad 86 yr old w/ MDS dx

[Eileen N. - CA]

Hello!
I am a new member - my dad, age 86 was diagnosed w/ MDS on 3/7/17. BMB shows Monosony 7, Trisomy 8, deletion 7q31, 2.6% myeloid blasts. Low Hg 6.5-9.3 between Jan-Feb. Dr recommends Vidaza 100 mg inj 5 days + 2 days, 21 days off, min 6-8 mos w/ Epogen 1x weekly.

I am concerned with Vidaza for my dad due to his age and the possible side effects. We are currently discussing his options with him, whether low dosage chemo or supportive care with blood transfusions as necessary. Does anyone have knowledge or input regarding Vidaza on elderly pts? When is iron overload an issue if he opts for supportive care vs Vidaza? He was given a prognosis of 1.6 yrs with Vidaza txs. Not sure if an additional 6-9 months of life for him is worth the possible painful side effects of chemo txs, esp at age 86.

My dad had cardiac stent surgery several yrs ago, and is recovering from shunt surgery for normal pressure hydrocephalus back in July 2016. He is walking now, out of a wheelchair and uses a walker.

We have appt with dr on 3/23/17 to start Vidaza or do supportive care. We are continuing our online research and discussing options with dad. It is overwhelming. Thank you so much for your thoughts and experiences with MDS on the elderly.

[bailie]

Eileen, I am sorry for the difficult diagnosis for your father. Welcome to this forum. It is a very tough decision. There are usually not significant side effects with Vidaza. The only thing I have noticed is localized redness (sunburn feeling) in the area of the shots and a tiredness for about three days following the administration. It is not as significant as what many think about "chemo". I have had 25 cycles of Vidaza. Of course everyone is different and the age of 86 makes it more difficult. The positive part of the decision is that if the Vidaza is causing problems it can be stopped at any time. Be sure to ask questions here if you have any. We wish you and your Dad the best.

[Eileen N. - CA]

Originally Posted by bailie

Eileen, I am sorry for the difficult diagnosis for your father. Welcome to this forum. It is a very tough decision. There are usually not significant side effects with Vidaza. The only thing I have noticed is localized redness (sunburn feeling) in the area of the shots and a tiredness for about three days following the administration. It is not as significant as what many think about "chemo". I have had 25 cycles of Vidaza. Of course everyone is different and the age of 86 makes it more difficult. The positive part of the decision is that if the Vidaza is causing problems it can be stopped at any time. Be sure to ask questions here if you have any. We wish you and your Dad the best.

Bailie-Thank you for your reply and helpful information on Vidaza. It comforts me to know side effects are minimal. May I ask which anti-nausea meds you have used, and have you taken prior to txs or after as needed? It is good to hear Vidaza has been successful for you. As of today, my dad is leaning towards supportive care only but with the info on this forum, his decision may change. He was in the US Navy, may have been exposed to chemicals on ships, and smoked for 40+ yrs, quit over 20 yrs ago. Thank you, again, for your support on this wonderful forum. Wishing you continued success with Vidaza.

[bailie]

I use ondansetron (generic for Zofran) for anti-nausea. I take it one hour before the Vidaza. I also start Miralax the same day as the first Vidaza and continue until the end of the shots (seven days) because the ondansetron can cause constipation. I have never experienced nausea from the Vidaza.

I think most people have been exposed to so many chemicals during their lives. It is hard telling why some people get these diseases.

[Eileen N. - CA]

Originally Posted by bailie

I use ondansetron (generic for Zofran) for anti-nausea. I take it one hour before the Vidaza. I also start Miralax the same day as the first Vidaza and continue until the end of the shots (seven days) because the ondansetron can cause constipation. I have never experienced nausea from the Vidaza.

I think most people have been exposed to so many chemicals during their lives. It is hard telling why some people get these diseases.

Thank you so much for the additional information regarding anti-nausea and constipation meds. My father was scheduled to meet with his hematologist/oncologist on 3/23/17 to discuss possible supportive care treatment plan if he decides against Vidaza at his age, however, he ended up in the ER that day with a fever over 104, pneumonia and a partially collapsed lung. He was admitted for 6 days. Last wk, he had a low grade fever on and off for 2-3 days, and as of yesterday, his fever has come back again, between 99-102 on and off with tylenol.

Wondering if these recurrent fevers may be a normal part of MDS?

[Sue&Dave]

Hi Eileen - my husband had intermittent fevers as a symptom of his progressing MDS. He had countless tests and a short hospital stay to rule out infections before starting him on Vidaza. Interestingly, like your Dad his blasts were minimal (between 3-5%), but the disease itself was wearing him down. He starts round 4 of Vidaza next week and the results thus far have been encouraging. Because he was feeling so poorly when he started the Vidaza the first two rounds weren't promising, with exhaustion and general malaise as his main complaints. About halfway between round 2 & 3 he felt remarkably better and only needed two transfusions early on in his treatment. It appears (hopefully) he may be one of the 'lucky' ones that Vidaza works on. His side effects were minimal as well. No nausea, but a short bout of constipation (as a result of the anti-nausea meds), some fatigue (less with each round) and definitely reddening at the injection sites. He takes stool softeners for the entire week of treatment and about 3 days afterwards. We are considering using a half dose of the Zofran to see if nausea is even an issue.
As you are well aware after researching this disease and reading these boards everyone reacts to the disease and it's treatments differently. How to proceed is a deeply personal decision and I wish the best of luck to you, your dad and the rest of your family.