[Keith Mallamo]

My thoughts and prayers are with you and your family. Never give up hope and always stand strong until the bitter end. Best wishes for a successful out come with the transplant!

[Keith Mallamo]

Joseph I lost a love one to various sarcomas over 8 years ago and after going through that entire experience the most valuable thing I learned besides being there as much as you can was being your own advocate as far as the doctors are concerned. They are people and unfortunately sometimes don’t excel to our expectations. In my friends case the “ball” was dropped on numerous occasions. It’s one thing when you go to the doctor for a common ailment, but when you are talking cancer and in some cases terminal its quite another thing. Confirm and double confirm ALL appointments. I can’t tell you how many times my friend had a CAT scan or MRI scheduled only to find out that when he went they couldn’t fit him in and had to reschedule. Someone on the doctors side had “forgotten” to make the appointment. My friend was being treated at Memorial Sloan Kettering in NYC which is one of the “best.” That is just one piece of advice. The other is DO AS MUCH research on your own as you possibly can. NO ONE will ever care or be as impacted as you. With the internet we have so much information. It can be overwhelming but just hang in there. I’m not saying be a doctor. Just do what you can and hopefully you find the answers your looking for. I did notice that you mentioned that you are in Virginia. I’m in no ways a medical doctor or practitioner but I have been following certain medical advances as of late. One on my radar is IMETELSTAT. It is a drug that targets telemorase in your DNA to combat MDS. Here’s a link if your interested:

https://www.geron.com/r-d/imetelstat/

Again I’m not a doctor and don’t know if its applicable in your father’s case. Every case is different.

They are recruiting for a study using IMETELSTAT and two locations are near your area – one in Bethesda, MD and the other in Baltimore, MD…..here is the link for that:

https://globaltrialfinder.janssen.com/trial/CR107947

One more note, as of now this is NOT approved by the FDA but was granted fast track status in 2017. Data results from ASH 2018 in December on the P2 study were found to be “remarkable” and side effects were “predictable, manageable and reversible” and patients in that study were also VERY sick. Best of luck to you and your father. Be there as much as you can for him now and maybe once and a while try and do what you guys used to do before he was sick if that’s a possibility. Act like its not happening and cherish the time you have together. I sincerely hope the info I passed in your direction may help. If not don’t stop looking up ANY avenues. The sooner you can find a treatment that helps the better off you will be. Best to you and your Dad!! Keith

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