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Kathie Wolf
ParticipantMy husband was on vidaza for 5 months and two of his labs, hemoglobin and platelets moved to the normal range. At 7 months the wbc entered the normal range. He completed 12 months of vidaza and ended with normal labs. He’s been in remission since then, going on 4 years. He has low risk MDS…
ParticipantMy husband went thru a round of chemo for one year with Vidaza. It was given one week each month. He also has low risk MDS with one mutation, AXL. All his three blood lineages were low at the start. By the end of the year, they were all normal and have stayed that way for four years with no further treatment. During his chemo treatment, we did discuss with his oncologist the option of delaying a month for a vacation and she said it would be fine. Good luck and enjoy Greece!
ParticipantMy husband was diagnosed in 2017. We did watch and wait, then Procrit and in 2018 he did a year of Vidaza. His labs came back to normal beginning at about 7 months, the last to become normal was his WBC at 10 months. After a year, he was given the option of staying on it or stopping. His oncologist said there was no right way. ( She’s connected to the Stanford center of Excellence). We asked if he restarted it again at a later date, would it still work. She answered, she had no reason to think it wouldn’t. He has not had any since and his labs remain normal. Good luck!
ParticipantOur oncologist gave him the option of staying off of it or continuing. She said there was no right answer based on the studies. So, after a year of treatment, we stopped. She did feel at that time the years treatment was important. We felt like his body would be better without the Vidaza, no need to expose him to it if he was stable. She also told us, if his remission stopped, we could use it again. I felt like it would be more likely to be successful if he had not been on it all this time. Less risk of resistance. Every persons journey through MDS is different. His diagnosis is very low MDS, so not as big a risk to progress to AML. As a retired RN, I am very aware that the physiology of each person effects how they do with any disease. The healthier and active he stays the better he does and hopefully will keep him in remission. Good luck! Be sure you use the resources from the Centers of Excellence for MDS. For us Stanford is close by and our doctor consults with them as needed and they are readily available to her. Good Luck!
ParticipantMy husband has followed a similar process. He did one year of Vidaza and went into remission, he is now going on four years this summer and doing fine, We consulted with the stem cell specialist at Stanford midway thru and while it is an option, it is difficult and not always successful. We opted to stay with the Vidaza as it was working. My husband was diagnosed in 2017. He was 71. He is very active, hikes, hunts and has no underlying diseases. His Vidaza treatment was in 2019. Generally Bone Marrow transplants are not done after age 75, but the specialist told us each case is looked at independently. So for know, he is staying the course with every four month blood tests. Curious why you are looking for a clinical trial. Sounds like the Vidaza is working for you.
ParticipantMy hubby was diagnosed with very low risk MDS in 2017 at 71. He was a watch and wait for about a year. Started Procrit in 2019. Worked well, had to stop because his Hgb got over 10. Started Vidaza august 2019, after a year all labs normal. No treatment since Sept 2020 and all labs are normal. Hgb in the 15 range consistently. Blood draws every three months, telephone visit with Oncologist every 6 months…doing everything he’s always done. Hiking, hunting, enjoying the grandkids.
ParticipantYou sound like you’ve done well with this disease for quite awhile. My husband was diagnosed in 2016 after a gunshot wound while volunteering as a rescuer for the Sheriffs department. He has low risk meds also. Not sure if the trauma brought it out of hiding, but he went a couple of years in the watch and wait mode. Then he progressed to Procrit to bump up his hemoglobin. That worked really well initially, so well his hemoglobin got too high, so they stopped it. Eventually it stopped working and in august of 2019 he started on Vidaza. Hi hemoglobin was 7, wbc 1.6, platelets 60,000, We had gone to a couple of seminars at the Stanford center of excellence early in his disease and realized how much variability there was. When he started the Vidaza, we were also referred to a bone marrow transplant MD at Stanford. It was more to tell us what our options could be at some point, but not that we were there yet. My husband was 70 and very healthy and active when diagnosed, which per that doctor worked in his favor. After a year of Vidaza, his MDS went into remission. He stopped the Vidaza and is now a year and a half out and all labs are still normal. I would definitely ask for a referral to the San Diego center of excellence. You can also get on line and look to see when they are offering seminars. They are helpful. Good luck!
ParticipantHubby was diagnosed in 2017 at age 70. Watch and wait for a year. When his Hemoglobin hit 8 started Procrit. Dramatic response, too good, as risk of deep vein clots goes up when over 10. So stopped. Restarted, developed a superficial clot so started Vidaza in August of 2019. Completed one year with all normal labs. Stopped Vidaza and has been in remission since. All labs continue to stay in normal range. Every persons response to this disease is different. So, for now, enjoy the watch and wait but know there are lots of “tricks in the bag” when you start needing them. Hubby is low risk too. Hasn’t had a BMB since 2019 when he started chemo.
Participantmy husband has had a similar experience, his oncologist told us it’s normal. It’s the bodies reaction to whatever stress is happening in his body. As a nurse, I’ve seen this in my career..it’s why people in the hospital always look pale. Good luck!
ParticipantMy husband is 74 and was diagnosed in 2017. We did the watch and wait, then in oct 2018 started Procrit injections, he responded so well they stopped it as his Hgb got too high. When they restarted he developed a peripheral blood clot, so in August 2018 they started Vidaza. He responded well quickly, but we were also given a referral to our local CE, Stanford, to discuss Bone Marrow transplant. It was more so that we knew what they option looked like and what the donor pool looked like at that time(15 potential donor matches). The risks and benefits were discussed. My husband is an avid hiker, backpacker, hunter with no health issues. The information was good to have as well as the connection. The transplant team did not recommend a transplant at that time. He has since gone into remission after a year of Vidaza and is currently not on anything and having labs drawn every two month. I suspect your referral is informational too. Good to know all the options on this roller coaster disease.
ParticipantMy husbands doctor started with procrit injections. However, there’s a risk of clots if your hgb goes higher than 10 so his was adjusted to stay in that range. It’s is a relatively low level intervention. When that stopped working, we moved to Vidaza infusions. After 10 months all of his labs are normal and his bone marrow biopsy is showing no abnormalities. Everyone is different in how they respond to the treatments and treatments differ based on your mutations and tolerance. Best of luck!
ParticipantSounds like a roller coaster. While we haven’t enjoyed the news, our Kaiser Oncologist has been great at guiding us through the process and options. She trained at Stanford and the MDS team knows her well, so the connection helps. I hope you get answers from UAB. Feel free to reach out if your have further questions or just need to vent. I am an RN, so like you, I do a lot of research. It helps knowing which sites have good information. The MDS site has several taped presentations on their website that are great and aimed at the layperson. Don’t overwhelm yourself with them, but maybe pick one that is for the newly diagnosed.
ParticipantOne of the things we learned early in this disease is that everyone reacts to it differently. My husband was diagnosed in 2017 with low risk with one mutation and now in 2020 we are in Remission after 8 months of Vidaza. Our Oncologist did not start out telling us that a BMT was the best option, but he was in his early 70s. At 73, we did have a consult with the Transplant Specialist at Stanford, and felt the risks were significant and we would pursue the chemo first. Thankfully, it has worked well for him. My husbands health is great, he’s back to hiking 10-15 miles a day and backpacking. Other than MDS, no other health issues. Having the consultation should be very helpful to you. A BMT is not without risks and there may be a point in your husbands disease progression when you want to pursue that. For now, gathering the information is good. My husbands labs are all now completely normal after a year of running in the 10-11 range. He celebrated his 74 birthday in August and has been off the Vidaza since September. We used Procrit and he responded well, but developed a superficial blood clot so it was no longer an option. Good luck! Hopefully his hemoglobin will get better and he will have more energy.
ParticipantThat’s awesome! And a great response that will hopefully get even better!
ParticipantSo sorry to hear of your husbands passing. Hugs and prayers for you and your family. Take care of yourself.
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