[Pat Lawson]

I am so sorry for the pain you are going through. Unfortunately there are no clear cut answers with this disease. My husband went thru a clinical trial hoping to give him an extended period of time or at least to help others in the future. He quit responding to the treatment after 14 months which was better than the 9 month expectancy that he was given. He met with the transplant doctor during that time and decided that the odds were against him and to let go and let God. Next week it will be 2 years since he was diagnosed. Please don’t second guess yourself. There are no clear cut answers with this disease. He receives blood and platelet transfusions weekly and we are grateful for every minute, hour and day that we have with him. He cries almost everyday about how he will not be here for his kids and grandkids. I pray that someday there will be a cure for this disease. May God bless you and your family.

[Pat Lawson]

My Husband was diagnosed in October of 2018 with High Risk MDS with excess blasts. That November he started a clinical trial of Vidaza and Venetoclax. He quit responding to the treatment January of 2020 so he tried Decitibine with no response. His bone marrow biopsy results in May showed his blasts back up to 13%. In June we started with Palliative Care and he has been receiving blood and platelet transfusions weekly. His Hemoglobin drops below 7.3 and his platelets drop below 10 so that is why they give him transfusions weekly. We go every Monday and Thursday to be checked. The Palliative Care doctor said in June that he would probably live 2 months but here we are in September and he is still with us. He spends most of his time in bed but the kids and grandkids come over frequently as do friends and he comes outside to enjoy time with them. He mowed the grass yesterday with our grandson on his lap. He also supervised family building a deck these past couple of weeks he was exhausted afterwards but he did it. It worries me that the cold weather is coming so he won’t be able to get out anymore to see people (he gets cold easy) and we cant let them in because of Covid. We are thankful for every day that we have with him and we will get hospice involved when needed. Hospice will not get involved yet because receiving blood transfusions is considered life saving so they won’t come in until he decides to quit receiving the transfusions or they stop working. I would definitely recommend getting Palliative Care involved they do a great job of helping with quality of life and then can easily transition to Hospice when needed. The nurses in Hospice are like angels walking the earth. Take Care & God Bless

[Pat Lawson]

Kathy, are you receiving any transfusions?

[Pat Lawson]

I’m sure you are looking forward to getting out of the hospital. Please stay safe when you get home and keep us updated on how you’re doing. I hope Amy’s explanation helped you she explained it very well. Take care & God Bless

[Pat Lawson]

October 2018 he was diagnosed with High Risk MDS with excess blasts. His blasts were at 12%. Typical span of life is 9 months. The standard of care was Vidaza or Decitibine infusions but he did not want to just do standard of care. He wanted to go into a trial hoping to give him longer or at least if it didn’t work to maybe help in the future for better treatments for others that are stricken with this disease. I found a trial for patients that had been diagnosed but had not received any treatments before and he started in it within weeks of diagnosis. They gave him Vidaza 7 days a week (standard of care) and the trial part was him taking Venetaclax orally for 14 days. Venetaclax has been approved for AML and they are doing the trial to see if it works for high risk MDS. He responded to the treatment for 14 months with his blasts dropping down to 2% during that time. Unfortunately he quit responding to the treatment and they now have him on the other standard of care drug Decitibine. He has had 4 rounds so far and they don’t think he is responding. He is needing blood and platelet transfusions weekly so they did a biopsy and we are waiting for the results. They are thinking he is transitioning to AML. Once they have the results they are going to search out another trial. That is our hope the longer you can hang in there the more possibility that there will be a better treatment. There is another website lls.org that you can look up on line and they have contact info on there to get in touch with someone that will take all your info and inform you of any clinical trials that match for you. I am getting ready to take him for treatment right now so if you respond again I might not get right back to you until He has gone into the infusion center.

[Pat Lawson]

Mark, I feel for you being in the hospital and not allowed to have visitors. Keep your phone charged so you can have your friends nearby and now you have found a whole family of new friends here that are here for you. I have been dealing with this for 19 months with my husband. He was in a clinical trial for 14 of those months. I can tell you that if you have to go the clinical trial route the doctors there are very supportive and always on top of your care. I am marking my response to notify me of any replies in case you just want to vent. Just know you are not alone. God Bless and hang in there….we are all rooting for you!

[Pat Lawson]

Rose I’m so happy to hear you both got home safely. I’m sure that was a very stressful trip home. How is he doing? Staying in is what you both need you’ve got to be exhausted. Stay safe and God Bless you both Pat

[Pat Lawson]

I would also like to know the answer to this question as my husband was in a trial of vidaza and venetoclax for high risk mds and he quit responding to treatment after 14 months. He has been changed to Decitibine treatments and needs blood and platelet transfusion treatments weekly.

[Pat Lawson]

He was in a trial for vidaza and venetoclax for 14 months but then he quit responding to it and started needing blood and platelet transfusions again so he just finished his first round of Decitibine to see if he responds to that.

[Pat Lawson]

Praying for a safe trip home infection free. Keep us posted.

[Pat Lawson]

Hi Cliff, My husband was diagnosed with RAEB2 in the fall of 2018. His blast count at that time was 12%. He started in a trial for Venetoclax November 2018 of 3 shots per day of Vidaza for 7 days and he would also take 400 mg per day of Venetoclax for 14 days. This was done on a 4 week cycle. It was very rough in the beginning months he was in a lot of pain and he continued needing blood transfusion. By January 2019 he was retaining hemoglobin levels and he wasn’t needing transfusions anymore. By the late spring/early summer of 2019 his blast count was down to less than 2% and they said he was considered in remission. Throughout his white blood counts were always low as were his platelets. Through the summer his hemoglobin levels stayed up but then in September he came down with an infection and ended up in the hospital for 5 days. Ever since then his counts have been staying down and he has been having to have blood transfusions again since November. He was told a couple of weeks ago that he could not continue in the trial because his counts are not recovering. They performed a biopsy last week and we are waiting for the results. Since he hasn’t had treatment for about 6 weeks now he is more active than he has been this whole passed year. His life this passed year was mostly spent in bed because he was so fatigued all the time. It really makes you think about quality versus quantity. Just remember everybody is different in how their body reacts to these meds and throughout his treatments the doctors would tell me of others in the trial that were being able to go on living normal lives. Take Care & God Bless

[Pat Lawson]

Thank you for the info but he is already going to a center of excellence. He is in a trial at the University of Maryland Hospital. He was also seen at John’s Hopkins for a second opinion.

[Pat Lawson]

Susan, Were you in a trial for treatment of MDS? My husband has been in a trial for over a year of Vidaza and Venetoclax for High risk MDS. Venetoclax has not been approved for MDS treatment yet.

[Pat Lawson]

As far as I know Venetoclax hasn’t been approved for MDS yet. It has been approved for AML. My husband has been in a clinical trial since November 2018 receiving Vidaza for 7 days and Venetoclax for 14 days with 3 week breaks in between. He is considered in remission because his blasts have dropped down to <2. His WBC and platelets drop in between treatements but come right back up with treatment. I’m a little concerned though because his hemoglobin was staying right around 11 but in the passed few months we are seeing that drop down into the 9’s.

[Pat Lawson]

Herb my husband is 65 years old and was diagnosed with high risk MDS last October. He has been in a clinical trial since last November consisting of Vidaza and Veneteclax and he is considered in remission. They say he has responded beautifully to the treatment and have many of the same results from others. I pray it will do the same for you.

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