Brand new to MDS

[Cristy Johnston]

We are 24-hours post diagnosis of MDS for my 69 year old father (Houston, TX). Waiting on our cyto tests to come back to determine how aggressive it is. We have been told he has 8% blasts and is falling into the RAEBt-1 category. I’ve got a lot to learn! Any general words of advice, encouragement, or realism is greatly appreciated!

[Michael]

Cristy–

My advice is to get a 2nd opinion, using an MDS expert at a Center of Excellence. Think MD Anderson is near you. My local hematologist ordered a BMB for me in 6/16. Report from local hospital was RAEB1 6% blasts. One month later had BMB with MDS expert at Center of Excellence and results much different 1% blasts MDS-MD (low risk). Follow up BMB’s (3 in two years) indicate no progression and still 1% blasts. I have been on watch and wait since diagnosis and feel well. Platlets are at normal levels, Red cells low/borderline normal;HBG low hovers around 12, White cells always low range 1 to 2 at most blood work ups (monthly). ANC generally in severe range but thankfully only skin infections, since diagnosis. All three cells lines show dysplasia.

You found the right place for education in this website.
Best wishes

[debra]

Hi Cristy! This is my very first post as i just joined last week. My Dad also has MDS. He was diagnosed at 61. All I really know is he is low risk. He has refused another biopsy since the original one where he got the diagnosis. We were devastated when we got the news and me and my sisters thought he would quickly develop leukemia and be very ill. Fast forward 21 years to today. While he has become transfusion dependent in the last year, he still works, hunts, lives alone and is fully functional and self sufficient, tho he does everything a little slower. I think the biggest piece of advice I could give is to always treat each day as if it could be the last and let your dad stay in control as long as possible. A few years ago my dad drew up his will and healthcare power of attorney stating what his wishes are. He is ready to go when God sees fit to take him and we fully support his wishes. No one can tell you how the course will go with your dad, everyone is different. A great source of info is the FB page called MDS Caregivers. Ask to join the page. Best of luck to you and your dad.

[Cristy Johnston]

Thank you Michael! We did go to MD Anderson and got another BMB (9/11/18) and now awaiting results. So good to have MD Anderson about an hour away…hoping things are at least stable and not further progressed, but they are initially saying high risk due to ALL his counts being so low (RBC, WBC, Platelets). I appreciate your encouragement and well wishes!

Thank you Debra! I am encouraged by your story! I’m happy you’ve had a wonderful 21 years with your dad POST-diagnosis! That is amazing! I’ve made sure to spend more time with him in the last month and a half than previous…you are right – use each day to it’s fullest! Waiting on our second BMB results and we will have more news on the 25th!!

• This reply was modified 5 years, 7 months ago by Cristy Johnston.

[JBC]

Hello Cristy and Debra. Ny husband was diagnosed with RDMD (fancy way of saying low counts in all three blood lines) in 2011. He responded well to Vidaza for almost five years and then had an allogeneic stem cell transplant at ago 71. He seems to no longer have MDS (this is HUGE!!), and no big problem with Graft vs. Host Disease (this is HUGE!), so he is one of the lucky ones. It has been a slow recovery and there is a lot he cannot do, but he is alive and has been able to enjoy a decent quality of life. Even though he is getting older, he is getting stronger, at least by inches. MDS can be a long journey, with twists and turns, and everyone is different. The MDS Foundation is one of the best sources of information, and we contribute money to them to help them with research and their wonderful Patient Forums. BEST WISHES!!

[Cristy Johnston]

Thank you JBC! My dad is also low on ALL counts – I am so glad to hear your husband is doing well post-transplant! What a blessing! My husband is a kidney transplant recipient and I know how stressful transplantation can be! We are very anxious for our appointment next Tuesday to see what MD Anderson is recommending as far as treatment options…fingers crossed and praying!! Thank you!

[LeAnn Duke]

Hi Cristy, I was diagnosed three years ago with MDS. I was low risk RARS and it went into RAEBS. I was blood transfusion dependent at first with the platelets and WBCs in the normal ranges but with the platelets continuing to drop slowly over a 6 month period. My husband and I decided to get a second and third opinion and we went to Cancer Treatment Centers of America in Zion, IL. and MD Anderson in Houston. I decided to work with Dr. Alvarado in the Leukemia center there on a clinical study using either Dacogen (Decitibine) or Vidaza (Azacitidine). Being that it was a random study the Dr didn’t choose the drug. My name was entered in and the program randomly chose the drug Dacogen. The study was to give the drug at a 60% dosage three days a month instead of 100% dosage for 5 days out of the month to see if they could get the same results. We live in Tennessee and this seemed to be a good option for us to try. We came to Houston every three months for treatment and the other two months my oncologist in Nashville worked with Dr. Alvarado and administered the same dosage. My cancer cells we’re at 6% and they stayed there for about 10 months. They they jumped to 14. Due to a bad sample of a bone marrow biopsy and some other issues at MD Anderson (nobody’s fault, just inconveniences) and the fact that we knew a stem cell transplant was imminent, we were forced to make a choice of moving to Houston for treatment or staying home for treatment. We chose of course to stay home. We contacted the transplant Dr and decided to move forward with the transplant plan. My younger brother was my donor, a 7 out of 10 match. They increased my dosage of Dacogen and gave me two months of treatment 5 days each month to lower the cancer cells. They got them back down to 6 and proceeded with he transplant. That was May 17, of last year. Sadly, the transplant has failed and I am again transfusion dependent and back on chemo, this time trying Vidaza. The Vidaza is at least holding my platelets and WBCs numbers at a decent level but the Dr wants to try what is called a Donor Lymphocyte Infusion. This is where they take some of the donors WBCs and infuse them into the body to see if they can reactivate the stem cells transplanted earlier. This can bring about a whole different set of problems. For me I have decided not to do this.

There are so many types and sub types of this disease so everyone is different in their bodies response to it. Some stay low risk for many years as the person whose father is a 21 yr survivor. That is extraordinary! I am so happy for him and his family. Also amazing results for JBC’s husband! This is wonderful for them. I pray your dad will have similar results. I am available anytime if you need anything. I am hopeful that there will be an immunotherapy drug soon that is successful in treating this disease across the board. God bless you and your dad!

[Cristy Johnston]

LeAnn, thank you too for your encouragement and experience! We are blessed to have MD Anderson just an hour from our home, yet my father is a stubborn old coot and has bad memories of the hospital from the 50s when he lost multiple family members to cancer. This is quite a journey for my dad who is 69 (70 in Dec.) and has NEVER been hospitalized in my entire 40-year life! Overall he’s been relatively healthy until this diagnosis. He lost his mother to ALL in 1986, 2 aunts to leukemia and his grandfather to colon cancer, so this is SUPER scary for him. I know medicine has come a long way and he is in one of the BEST places in the country for treatment. I am most concerned that his every one of his counts is SO low (thus being high risk) and his platelets are scary low. We go next Tuesday for our treatment plan, BMB and cytogenetic results…praying they give him some good clinical trial options and that he takes their advice!! Thank you again.

[LeAnn Duke]

I understand completely the fear of the unknown. I am 61 now and 58 when diagnosed. I am glad you all are so close to MD Anderson. They are a good hospital. Just a word of encouragement as you go along. Take something to read or something to do, because the schedules don’t always go as you might think. There are so many people as you have already seen that come to that place, that lab appointments and Drs appointments and any other tests done along the way can take forever. Also something important that most people don’t know is that if they want to do a bone marrow biopsy, your dad can ask for anesthesia before the biopsy. They will try to talk him out of it saying it isn’t all that painful, but if he doesn’t want to go through the pain, they will give him a bit of twilight anesthesia and do the biopsy while he sleeps. He won’t feel a thing and it is a whole lot less stressful. I had been warned and urged to not do one while awake because they are very painful. I don’t have a high pain tolerance as some do, so I insisted they put me to sleep. Each time they did one I had to make sure they knew I wanted anesthesia! This might help your dad a bit not to be stressed more than he needs to be. If I think of anything else, I’ll let you know! Any questions you are have I’ll try to help with.

[Cristy Johnston]

Thank you LeAnn! His first BMB was done at Methodist Hospital in Sugar Land and it was done with the twilight anesthesia. He said it was still very painful. He had another done on 9/11 @ MD Anderson without anything and said it was MUCH easier! They do SO many aspirations there, they are really really good! He wasn’t nearly as sore with the second one. We got preliminary results back and Methodist BMB said 8% blasts, MD Anderson is showing 6%. Not a huge difference, but it is lower! We go back on 9/25 to MD Anderson and I am eager to hear their treatment recommendations! So glad I found this sight – y’all have been so welcoming and encouraging! Thank you again! 🙂

[B. B. Connor]

Hi Cristy, Welcome to this site. I went to M D for a second opinion and am glad I did as they suggested a blood test before trying Procrit It turns out I had too much “something” in my blood. Their second suggestion was Revlimid. I have been on Revlimid for 2 1/2 years now. So, You are in good hands. I use an oncologist in College Station becauseit is closer and not so much traffic.; however, My doctor took the advice of M D.
Best to you and your father as you begin this journey.
B B

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