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Old Wed Sep 20, 2017, 11:39 AM
cosmo1 cosmo1 is offline
Join Date: Sep 2017
Location: Tampa FL
Posts: 1
Confused about path forward - AML treatment

Hi - I am new to this site, and very much appreciate the information that is made available.

My father, 86 y/o on 9/6, was diagnosed with MDS in April 2017, and it advanced to AML in July 2017. His oncologist prescribed a treatment program of 4 cycles of Dacogen, every 28 days. The first cycle was administered for 10 sequential days. 4 days later my dad fell and hit his head, and had a brain bleed as a result. All his counts were very low, and his bp was 90/40 when this occurred. We called 911, and they took him to the ER. It was awful. The brain bleed was relatively small, however we were very concerned for obvious reasons. Surgery was not an option due to his low counts and condition, so they gave him platelets. Miraculously, he recovered. However, 4 days later he developed MRSA and it went septic. We were told this was the end. They gave him triple antibiotics, and again, he recovered! We were all amazed and SO relieved. After that...he developed metabolic encephalopathy, which we weren't sure he would come out of. AGAIN he recovered after a couple of weeks.

Overall, he was in the ICU a little over a week, the 'regular' hospital about 3 weeks and an LTAC (where he is now) for 3 weeks. So total he's been in the hospital for 7 weeks this Thursday. He has recovered amazingly mentally and physically. Granted, he is still quite weak due to the long hospital stay (and maybe other reasons?) and mostly bedridden (other than an hour of PT a day where he can walk about 150 steps, sit up, do exercises, etc.), however 2 weeks ago he could not walk ONE step and he could not talk, so he has made HUGE progress. His appetite is coming back a bit as well, which are told is key to recovering his strength.

So, now we are faced with next steps. His current hospital says he needs more rehab to be able to be walk again and be somewhat independent, so they want to send him to a 2-week inpatient rehab program in a different hospital, and after that either go home with help, or to a skilled nursing facility.

Our concern as a family is the progression of his disease. His oncologist, and the other doctors, are saying he is still too weak for treatment (which would likely be a combo of Dacogen and a newly approved drug called Rydapt), every 28 days for 5 days in a row as an outpatient. Apparently a patient needs to be almost at baseline in terms of independence and strength before considering any treatment. My and my family's worry is that the disease will return before he is strong enough.

So I guess my question to readers is, has anybody experienced something similar? Has anybody seen cases where Dacogen or other similar treatments are administered to bedridden or very weak patients?

I can provide more info...for now, the above is the general summary. I appreciate ANY insight, shared stories, or information. Thank you!
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Old Mon Sep 25, 2017, 12:34 AM
Nin Nin is offline
Join Date: Sep 2017
Location: itinerarypay
Posts: 2
Also exploring

Hi Cosmo,
My mom started with Decitabine/ Dacogen almost 3 months ago, as a strong and feisty positive thinker, she had a haemotoma which led to her starting the treatment. I have seen a rapid deterioration and personally am not convinced about conventional treatments - my husband is cured of lymphoma because we left the chemo/ hospital route and went 100% natural medicine for the past 6 years. I have finally convinced my parents to be open to at least investigating an integrative approach and I have just joined this site. Already with a few days of research, I am feeling hopeful that the condition can be reversed and even cured. So far this is what I am learning: cut out sugar, preservatives, any chemical products at home, gluten and acidic inducing foods (eg. meat) - use organic and get the body into an alkaline state as cancer cannot survive in this environment. There are treatments like ozone therapy where available and Vitamin C IV that can boost the immune system and red blood cell count and a range of foods and herbal treatments that I am going to add into smoothies - almond milk, coconut milk, hemp powder, chlorophyl, berries, no stress/ faith/ hope, proper water, chelation therapy can remove toxins, chives, organic sauerkraut (fermented foods) and Natto, vitamin A, D and ESPECIALLY vitamin K, Olive Leaf tea for pain/ immunity, Essiac tea, juicing... basically - detox, boost immunity, alkaline body, proper nutrition and positivity kill all cancers. I am still convincing mom to see what we can start integrating - if she continues with chemo, proper nutrition and immune support are vital. The web site: Chris cured cancer is a wonderful resource with testimonies from people of all ages, including a Leukemia survivor in his 70s who went a natural route after chemo was not an option. Others I am looking at are alternative-cancer-care.copm, The best thing is to educate ourselves/ take charge of our health because the pharmeceutical / medical industry is brutal and make informed decision. Dad watched the you tube from Chri's website of the oncology nurse who resigned after 17 years and who details how the cancer industry operates. Maybe start with this and take it from there. I will check in again...
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Old Mon Sep 25, 2017, 07:17 AM
lisa3112 lisa3112 is offline
Join Date: Jun 2016
Location: Melbourne
Posts: 105
Wow he is a fighter! I guess just give him time to get near baseline level. The medical team will know when he is ready. Best of luck to him. 🙂
Now 30yr old. Diagnosed AML dec 2015 (Most likely MDS prior). Trisomy 6. Runx1 mutation also. Had induction and consolidation chemo. Marrow failure ++ so SCT on 21st of March with MUD. Married with a 1yr old!
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Old Mon Oct 2, 2017, 10:03 AM
Nin Nin is offline
Join Date: Sep 2017
Location: itinerarypay
Posts: 2
On track

Hi again,

We have taken matters in our own hands, mom is not continuing with chemo, bought a juicer and taking some things from the Gerson Diet (google it) - especially regular juicing of carrot, apple and carrot and green juice to up the nutrition. Have been making smoothies with coconut milk, almond milk, egg white powder, vit c powder, berries and berry powder, peanut/ almond butters to up her fats and nutrition - all organic preferably, and adding vit c and alkaline powder into her drinking water, which is now being filtered - no more fluoride and poisons to come into her system - she has gained a bit of weight and pain is subsiding. Google the Alkaline Diet and cancer reversal - cancer hates vit C and an alkaline body. Today, will introduce greens especially chlorophyll that can restore healthy blood with AML. I have also order Osteo K - look at you tube testomies from survivor using this product after chemo failed him... we also found a natural medicine / cancer specialist to take over from me and will see him Thurs. Am putting together a list of foods, teas, supplements that we are using and will keep you posted on the blood work - we will still go for weekly monitoring to her GP and oncologist. Blessings to you
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