Forum Replies Created
-
AuthorPosts
-
debbie stern
ParticipantI have been on a micro dose Dacogen since 2019 and am still stable. The protocol was deveoped by Dr. Yogen Saunthararajah at Cleveland Clinic. It is a micro dose and does not drop blood counts. He has written papers about it starting about 15 years ago. I would suggest you consult with him or ask your Oncologist to reach out to him to see if you are a candidate for this protocol. There are no side effects.
Also PF is fairly common with MDS according to Cleveland Clinic. Best of luck!ParticipantMichael,
Can you please share what the plan is if you don’t do transplant. I am 73 and on a micro dose Decitabine protocol that has been keeping me stable for 4 and 1/2 years but my platelets are starting to fall.
I also probably won’t do a transplant and am wondering what else your team is offering you after the month in the hospital. Feel free to email me privately at deblevstern@gmail.com. Thank you and best of luck!ParticipantHi Roxanne,
I have CMML. I have been pretty stable on a micro dose chemo thru Dr. Yogen at Cleveland Clinic for almost 4 years. I am happy to write to you if you email me. My email is: deblevstern@gmail.com.
Debbie SternParticipantHi Amy, I have been on a micro dose decitabine protocol for almost 4 years. It is still working but not as well as it did and I know we will be looking for something else soon. I am 72 and not a good candidate for a transplant. I would be very, very interested in the new therapy you received. Could you please give me the information. My email is: deblevstern@gmail.com. Debbie Stern
ParticipantHi Wilma,
I am 72 and have been on a micro dose of Decitabine for 3 and 1/2 years.Although,I am not quite as good as I was 3 years ago, I am still stable and totally functional. Dr. Yogen Saunthararajah at Cleveland Clinic developed the micro dose protocol I am on. I am curious to know who your dr. is and what dose you are getting. I am getting 0.2mg/kg body weight so 14 mg injected in the abdomen weekly. Is that what you are getting?May I ask where you are treated?
As for how long this can work, everyone is different…and the disease can progress slowly or suddenly. I have been lucky so far! Best of luck!ParticipantI was diagnosed with CMML in 2019 after first diagnosed with MDS in 2017. I am happy to talk to you about this. My email is deblevstern@gmail.com. Debbie
ParticipantKathy, may I ask where you had your transplant and did you have a 10/10 match? I am 72 and will need a transplant but only 9/110 match.
Lawrence, My Oncologist is talking about adding a low dose Venetoclax when my micro dose Decitabine stops working. My understanding is that regular dosing with Venetoclax can drop your counts, so I would ask your Oncologist about that issue.
I have been stable 3+ years on 0.2mg per kg body weight but we don’t know how long it will work for. DebbieParticipantHi Paula,
I live in Buffalo too and am treated at Roswell which is probably where you are treated?. This would be a good question to discuss with your Oncologist. I bet they could help arrange transfusions in Hilton Head if they are okay with you going.Feel free to contact me. My number is: 716-688-0058.ParticipantMedical aid in Dying is legal in 10 states for terminally ill people in the last 6 months of life. Check with “Compassion and Choices”, an organization that supports Medical Aid in Dying, to see if it is legal in your state. If so, and 2 doctors sign off, you can get a medication prescribed that will give you a peaceful death.
Best of luck in the rest of your journey.Participantfollowing…I am also interested. I am on 1/2 the lowest dose of Lexepro (5mg). When I went up to 10mg, I did think my platelets got lower, so I went back to 5mg and am not having a problem. I wonder if some antidepressants are better than others.
ParticipantHi Alan, Thank you for responding. I have seen posts where patients have said that an increase in bone pain seemed to come with progression for them. I am so hoping that is not the case, so good to hear it did not mean progression of disease for you!My pain migrates from under knees to thighs, and lower back/hips. I will try Aleve. I am always scared to take anything that might effect blood counts. May I ask where your platelets were at when you noticed the aching pain? Feel free to write me at: deblevstern@gmail.com. As I said, mine dropped to 142 from 172 when I noticed the pain starting….I guess I need to get another blood draw and see if there is progression…is anyone on pain killers for this migrating achiness? If so, what?
ParticipantRandy, I too am being treated at Roswell and live in Buffalo! Please email me at: deblevstern@gmail.com
DebbieParticipantI am low risk and was diagnosed 14 months ago. My counts are near normal and I am “watch and wait”. I did travel overseas in the summer, and wore Curad Anti Viral face masks that I bought in the pharmacy. I also used alot of hand sanitizer. I did not get sick. It depends on her counts, particularly Neutrophils. She should ask her Dr. if it is okay to travel. I was told there is no reason not to travel right now. Best of luck.
ParticipantHi guys, So I was diagnosed with MDS/MPN U after being diagnosed somewhere else with multilineage myelodysplasia. I am not sure which it is. Will get a third opinion this month. I was told it is MDS/MPN U because my Anemia is Normocytic. I was told that it is usually Macrocytic if it is regular MDS….I am not even sure all Hematologists would agree with that, as the first one said Multilineage Myelodysplasia. I will let you know after I get a third opinion. I have Hgb of 10.7, mildly low Hematocrit and platelets and RBCs, and low normal white blood cells. I am watch and wait. Debbie
ParticipantHi Tracey,
I also was diagnosed with MDS/MPN U in Febrary. I would be happy to talk to you. Please write me at deblevstern@gmail.com. and tell me more and we can share more. Who is your oncologist that diagnosed you and where is he/she? There are MDS and CMML FB groups and really you could fit in either, but I also don’t personally know anyone else with this specific category of MDS, and would love to know how many are out there and what they have been told. Please write me. Debbie -
AuthorPosts
