Questions about agent use and length

[Fordad]

Good Afternoon everyone. I have been doing a lot of research, as I know you all have as well, but I am left with questions that maybe don't have definitive answers.
My father was diagnosed with MDS RAEB II in April of 2016. He has some other co-morbid conditions but for the most part was "healthy". Initially he was started on Vidaza and after 4 rounds and a BMB his oncologist concluded that there had been no improvement. He was then started on Decogen and has completed 4 rounds on it as well. He just completed another BMB but the doctor has little hope of any improvement. My father is 76 years old and has been told that stem cell transplantation is not an option for him so his only other choice would be intense chemo but, due to his age and other conditions, it is not recommended.
I feel that the Vidaza was stopped prematurely, from what I understand from the research, 4 cycles is when it begins to start working. He has been getting blood and platlet transfusions at about 7 to 10 day intervals for several months now and of course now I worry about iron overload. I feel like they are giving up too quickly. The last CBC auto diff he had showed the following values: WBC 3.6, Neutro 14.9%, Lymph 76.1%, RBC 2.54, Hgb 7.1gm/dL, HCT 22%, MCV 86.5, Plt 17, MPV 6.7.

[JordanN]

Hi, Fordad,

I'm very sorry to hear of your dad's diagnosis. I think one of the major frustrations with this disease is how differently it presents and responds to treatment in different people and how differently each doctor chooses to treat each patient's condition. While there are some standard protocols for treatment, it does seem that different doctors make different decisions for what appear to the layman unclear reasons. I would suggest always asking the doctor why he/she feels certain treatment options are optimal.

My dad was also diagnosed with MD RAEB II in March of 2014. He was 80 yrs old at the time and had no co-comorbidities. Like your dad, he had 4 cycles of Vidaza but ended up with neutropenic fever during the fourth cycle. The doctor gave him a six week break and did a repeat BMB which showed no change from his original results (my dad's WBC, RBC, and platelets never showed any response to the Vidaza either, and he required transfusions every couple of weeks or more throughout his illness). So, the doctor continued Vidaza since he felt it might be keeping the MDS at bay even though things weren't improving. My dad's counts would drop extremely low after each treatment and it quickly began to take longer and longer for any recovery at all of blood values even with transfusions so the doctor decreased his dosage from 7 days to 5 days to 4 days with 6 weeks or more between treatments. He was also told that stem cell transplant and other chemotherapies where not an option.

He had several BMB's during this time, and he never showed any change at all (marrow blasts were 18-19% the entire time). After about 16 months, his MDS transformed to AML and his treatment was stopped. However, while Vidaza never worked (and we were always hoping it would start working) as it is intended to, it probably did at least slow down the progression of the disease. My dad's doctor felt that dacogen had a less effective rate of success compared to Vidaza and felt that it would not benefit my dad. He also felt in his experience with MDS patients that though Vidaza can take a long time to work the vast majority of his patients had at least a partial positive response within the first 4 to 6 months.

I hope this information helps, and I wish you all the best with your dad's treatment. The course of the disease is very frustrating and confusing, and I hope you can find some answers to help with your decision making and to bring everyone a little peace in a time of great stress.

[Fordad]

Thank you for your response JordanN.
I appreciate you taking the time to share your experience with your dad. I hope this is not rude, but may I ask, is your dad still alive?

My dad lives in Missouri and so I don't have an option of being much of an advocate for him. I try to stay abreast of the research etc. but, sometimes it leaves me with more questions than answers.

From what I understand, as you stated, Decagon is only effective for a much smaller group than the Vidaza. I also read that once treatment is stopped it is not effective upon restart so, I guess there are no other options at this point. Dad will not get the results from his last BMB until 1/9/17 so I guess there is still hope that there will be some improvement. He has been losing a lot of weight due to lack of appetite, more than anything, but it causes concern. I guess I will play the waiting game for a few more days. Thanks again.

[JordanN]

Hi, Fordad,

Not a rude question at all - we are all on here looking for answers and hope but also looking for what to realistically expect for the worst case scenario especially in cases where there are very limited treatment options. Unfortunately, my dad passed away in November of 2015 about 20 months after his initial diagnosis. Given how poor his original prognosis was and how low his response to Vidaza was, he did very well and was pretty comfortable until the last couple of months.

He also had a lot of weight loss and low appetite in the first couple of months of treatment. He complained that Vidaza made salty foods incredibly salty and sweet foods unbearably sweet. It took a fair amount of experimenting, but we eventually found foods that tasted okay and found a number of snacks that required no preparation that he could have on hand. Eating a few smaller meals during the day rather than three larger ones worked for him. He also liked Boost (a liquid supplement like Ensure) that really helped keep his nutrition up when he wasn't eating well.

I'm hoping you get good news when you get the results of his BMB. My dad's numbers were always very low (hgb around 8, WBC around 1, platelets anywhere between 10 and 40, bone marrow blasts 18%) but I do believe that continued treatment did kind of keep things from progressing for a good year. Hope this helps, and I'll be wishing you all the best!

[Fordad]

Hi JordanN,

I am so sorry for the loss of your dad. This disease is so frustrating as most cancers are. You are right, we are all grasping for whatever information we can get and realistic expectations. Your insight has been very helpful to me.

The doctor told my dad when he first began treatment that he gave him 10 months with no treatment. I know these time lines are not by any way set in stone (I'm a registered nurse) so I have some concept of the dying process. But, knowing now that neither of the agents used have had any effect makes his prognosis so much more dire. He does do some grazing, in regards to his food intake, but is taking in far less calories than what he should even with his limited activity.

I will try to be patient until we know for sure with his BMB results and continue to search for anything new. I thank you again for your time. Once again, I am so sorry for your loss.

[JordanN]

Thank you, Fordad, for your kind words. I really appreciate it!

I know it is impossible, but try not to worry too much and know that I'll be thinking of you and your dad and wishing you all the best!

[Fordad]

Well, dad got his BMB results and unfortunately the news was not good.

My mother told me that, the doctor felt as if the Vidaza and Dacogen had not done anything to improve his numbers. His blasts are PB 20% and BM 23%, platlets 11. He has now transitioned to AML and there will not be any more treatments.

They will continue with blood and platelet transfusions as needed and continue to monitor his iron counts. The doctor stated that he doesn't think that he will "be around" when the need arises for iron chelation therapy. I appreciate the fact that the doctor doesn't give them false hope but, I think that you do need to give some hope.

I feel that dad probably had MDS for quite some time before he was diagnosed because his transition was far too rapid. Has anyone else seen it move this fast?

[Sally C]

Hi ForDad,
I am so sorry to hear this.
My husband's MDS did come on fast which made for a difficult diagnosis.
In March of 2008 his counts were totally normal. Dec. 1, 2008 we were in the hematologist's office. In Jan.,2009 he started what would be the first of over 125 blood/platelet transfusions. It took going to NIH in Bethesda, Md. in March, 2009 to get a firm diagnosis of MDS and a year and a half before his marrow presented with MDS.
After Campath and cyclosporine didn't work, he was the first guinea pig for the Eltrombopag (Promacta) clinical trial for MDS at NIH. He has been in remission for 5 1/2 years now and on no MDS meds. There was a time he was on his oncologist's death list. There is always hope. He is now 71 years old.
I wish you both the best.
Sally

[Fordad]

Hi Sally C,

That is wonderful news on your husband. It sounds as if you have been in good hands from the beginning. I am suspicious that my dad had MDS back in 2014 when his blood work showed thrombocytopenia and possibly even before that. Unfortunately, it wasn't until April of 2016 that he was diagnosed with MDS and immediately started on treatment.
The oncologist that my father is using does not specialize in MDS, although I know it is not a needed criteria, I wish that he would take the step to see someone who does.
I have mentioned clinical trials to my parents and my dad seems content with his current situation, maybe he has just given up. I don't have the answers and I know that everyone reacts differently but it is difficult when I am not in the same state to prod him along.
Your husband received a lot of blood/platelet transfusions. Can you tell me how many units he received before or if he started iron chelation therapy? I am praying for the best with dad but I feel as though he has already accepted a "death sentence". I appreciate your kind thoughts and information.
Fordad

[Sally C]

Hi ForDad,
Don was given Exjade to get rid of the iron load. If I remember correctly it was started after his last transfusions although I can't swear to that. I do know that the Exjade was started in the summer but by Dec. his kidney function was being affected so it was stopped. It has since dropped to the point that his ferritin was actually too low. He had to go on iron supplements for a short while and it's now normal.
Don's doctor in Richmond is an oncologist/hematologist. Although I understand it's your father's wishes that make these decisions - as complex as hematology is, I would only want Don to go to a hematologist. I just don't believe an oncologist can understand these complex blood diseases as
well.
Although 76 sounds young to me due to my age I think it's very common for elderly patients to go with the familiar even if it's not the best decision in choosing their care providers for their conditions. I know how frustrating that can be for you. I don't know his other health issues but it may be the case that he's just tired and doesn't want to deal with intense chemo. I'm with you though - I wish he would go to a hematologist. But whatever, it ultimately is his decision as you know. I hope that will bring you peace with whatever happens.
I wish you both well and if I can be of any further help please let me know.
Sally

[JordanN]

Hi, Fordad,

I am so sorry to hear about your dad's BMB results and resultant AML diagnosis. It is the course that everyone fears, and it is not a fun road to be on!

I, too, feel that doctors sort of give up on the older patients who are not believed to be eligible for transplants or more aggressive treatments. I know the majority of research indicates that older patients (especially those over 80) do not tolerate or respond long-term to these treatments, but it is hard not to have any choices when you have a loved one in excellent health except for the MDS and who might benefit from another treatment. We also looked into clinical trials, and though I honestly could not find anything that I thought would be reasonable to try, my dad's doctor made it sound like it would be too much work on his part to get my dad into anything if my dad was interested.

As far as how fast does this disease progress, well, it seems that it can be slow or very fast. My dad had a full physical in September 2013 in which his blood values where well within the normal range. By December 2013 he was definitely showing signs of anemia and low platelets and by March 2014 he was advanced enough to be diagnosed with MDS RAEB II with marrow blasts at 18%. I do believe the Vidaza stopped the progression of the disease for about a year, but once it started progressing again, it went very rapidly. I am really hoping your dad's progression from this point will be much more gradual.

Also, I wouldn't worry too much about iron overload. We constantly worried about it, but my dad's hemotologist was not concerned as my dad had no symptoms. He had about 65 RBC transfusions during the course of his disease and never had any iron overload symptoms and was never treated with any medications for iron overload.

Please, know that I am hoping and praying for your and your family and wishing you the best. I hope you can find a doctor willing to work with you or that you can find peace if your dad has decided that he is done with treatments. It was a little easier for my dad because my mom had passed away many years ago, and he missed her and was ready to see her again.
Sending hugs your way!

[Fordad]

JordanN and Sally C,

Thank you both so much for sharing your experiences with me. It helps me to read what others have experienced so I can at least gauge what are normal expectations.
Sally C, My dad is seeing a oncologist/hematologist I think I left that out previously but he doesn't specialize in MDS/AML.
I appreciate the insight on the iron chelation therapy. Everything I have read gives different ranges so I guess it's the same as it is with the blood work...it depends on what the doctors ranges are.
I spoke with my mom this morning and dad woke up in the middle of the night in total confusion. He did not recognize my mother or his surroundings. Mom said he slept on and off all day and has "spots" all over. I can understand the sleep and the spots (his platelets were 11 on Friday), the confusion has me concerned. Mom did call the emergency line and they told her to wait until tomorrow and call his doctor. He is sleeping again..we will see what the day holds. I am in a little bit of a tailspin at how quickly this disease is grabbing hold of him.
Thank you both so much for your kind words, thoughts and prayers. My hope is that my dad has pain free full days and has many left. Realistically, I know that our time window is narrowing and I will cherish what time is left while trying to find the best treatments available for him.

Thank you again,
Have a blessed day