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Amy Clark
ParticipantMark, there may be some other options. Call the LLS number below. I will repost the most important paragraph in case you didn’t see the above post from June 26, 2020. We will keep praying for you. Amy
In case your stem cell doctor yesterday didn’t know to mention them, there are clinical trials available for AML patients who have completed induction and/or consolidation but who chose not to or cannot proceed to transplant. The LLS Clinical Trial Support Center can do the legwork for you in finding one or more you may qualify for. They are open M-F 9-9 EST. They also know about grants for co-pays and other medical expenses, and other resources. They can search clinical trials based on your area, mutation, places you are able to travel to, or other parameters. You might consider calling them. I did a “test call” for you just now and even learned that they will do the same for MDS patients and have grants for us as well. I had no idea… Here is the number: 1-800-955-4572.
Our own MDS site also has a listing of clinical trials, but since you are now an AML patient, the LLS organization (lls.org) likely has more for your particular situation.
Lastly, it can be daunting to do all of this alone. If you ever need someone to listen or mull over options or just to vent, please feel free to call. My husband (a former Ironman) and/or I (a former oncology nurse) would be more than willing to take the time to help you however we can from afar.
832-540-4214. God bless you. AmyParticipantYes, it is the HMA (hypomethylating agent) Dacogen (decitabine) in a pill form with an inhibitor cedazuridine. The cedazurine keeps the Dacogen from being broken down too early. This was previously known as ASTX727 in the clinical trails. My husband has been taking it in the clinical trial and started his 17th cycle today. We didn’t see much improvement until the 7th cycle, but since that time he has not needed another blood transfusion. Yeah! However, he still has blasts and the mutations and dysplasia in his blood and bone marrow, so they don’t consider him in remission. He takes all of the pills at home and goes into the clinic for labs routinely. The first cycle sent him to the hospital with febrile neutropenia.
You have to be really patient with HMAs (Dacogen and Vidaza) as they often take awhile to work.
Here is a link and a quote: “The ASCERTAIN phase 3 study data confirms the hypothesis that by inhibiting cytidine deaminase in the gut, systemic therapeutic concentrations of decitabine can be delivered orally to achieve decitabine systemic exposure equivalent to IV dosing,” said Dr Garcia-Manero. “The data support that ASTX727 could become an oral hypomethylating agent alternative to IV decitabine.”
Hope that helps! Amy
ParticipantHi Mark,
I am sorry to hear you picked up C. diff at the hospital. I hope that goes away soon.I have been thinking about you and your questions. Those are tough questions. Individual patients are so…. different. Mutations play a big part. You are doing the right thing by gathering as much info as you can, medical and practical, before making your decision. Identical twins could go thorough the same transplant and have vastly different outcomes.
I wish it were more straightforward. Some people trade a life threatening disease such as AML or MDS for a chronic disease after a transplant like HVGD and are thankful, as some post-transplant affects are doable with a “regular” life. Some go through a transplant and are not happy with the “new normal.” Some patients don’t make it. Some patients chose to try a clinical trial of a less toxic nature and are still awaiting the outcomes. No medicine is claiming to offer a cure, but some clinical trial meds are showing anti-leukemic affects. Some patients skate through the treatments without a scratch, although these numbers are low from my research. (You were one of these, though, with your chemo!) No one can tell you how YOU will end up being specifically affected by any of these. However, mutations and other personal information can give you an idea of relapse rates somewhat. That would require research, if your doctor doesn’t know right away.
Gather the info, weight the pros and cons, and make the best decision for you at this point in your life. Don’t look back.
In case your stem cell doctor yesterday didn’t know to mention them, there are clinical trials available for AML patients who have completed induction and/or consolidation but who chose not to or cannot proceed to transplant. The LLS Clinical Trial Support Center can do the legwork for you in finding one or more you may qualify for. They are open M-F 9-9 EST. They also know about grants for co-pays and other medical expenses, and other resources. They can search clinical trialsbased on your area, mutation, places you are able to travel to, or other parameters. You might consider calling them. I did a “test call” for you just now and even learned that they will do the same for MDS patients and have grants for us as well. I had no idea… Here is the number: 1-800-955-4572.
Our own MDS site also has a listing of clinical trials, but since you are now an AML patient, the LLS organization (lls.org) likely has more for your particular situation.
Lastly, it can be daunting to do all of this alone. If you ever need someone to listen or mull over options or just to vent, please feel free to call. My husband (a former Ironman) and/or I (a former oncology nurse) would be more than willing to take the time to help you however we can from afar.
832-540-4214. God bless you. AmyParticipantMark, so glad to hear the good results so far! We are all rooting for you!
AmyParticipantHi Mark,
I am glad to hear from you. I was so sorry to read that you developed AML, but thankful you are receiving treatment and that you have your girlfriend to help you. We have been praying for you. And now I will pray for her too.About your question, you are correct. But don’t lord it over her, the information out there can be very confusing. And she is likely trying to understand all of it for your sake. 🙂
The simple explanation is that MDS and AML are part of a continuum that moves you along largely based on the number of blasts found in your bone marrow and blood – over 20% and you have AML, under 20% and you have MDS. Kind of like getting renamed an executive chef after having been a sous chef. You didn’t “un-become” all of the things that make someone a sous chef, just added on more recognition of new skills and responsibility (and pay hopefully.) And… henceforth, you are known as an exec. chef, NOT a soul chef. Likewise, you will be known as Mark, an AML patient or an AML survivor, not Mark a MDS patient or MDS survivor. (We all know you have more skills than that medical description of yourself, like Mark the Hiker or Mark the Athlete, etc.etc., but we are talking hospital jargon here, so bear with me.)
The other part of this, aside from the blasts increasing, is that the mutations increase in number. Some mutations are only found in AML patients and aid the diagnosis. Some AML mutations “arise” from MDS mutations, according to medical researchers, while others develop parallel to the MDS mutations, according to different researchers. The main thing all AML-important mutations do is increase the blasts. These blasts crowd out your good cells and make it hard to produce proper blood. The type of mutations you have are your calling card for different drugs or drug trials. Typically you just add mutations as you move from MDS to AML.
Finally, depending on what she is reading, she may not realize the subtle difference between reading about AML de novo, which is AML all by itself, and secondary AML, which is what you have if you had MDS prior to the development of AML. AML de novo has different mutations than sAML, (also known as AML-MDC, or AML with myleodysplastic changes.)
I hope this helps and that it is a little clearer than mud.
Thank you for allowing us the insights of going through the process of treatment. Know that we are rooting for you and hoping the best for you, inside and out.
God bless you,
Amy ClarkParticipantTo clarify, his pain started only a few months before he was diagnosed with MDS, when he was also having night sweats, joint pain, fatigue etc. The pain was one of the symptoms that brought him to the doctor in the first place.
ParticipantMy husband has bone pain in his ankles, upper legs, hips and upper back all the time which gets worse at various times during his oral Dacogen cycle (Clinical Trial with ASTX727). The pain spikes high for a couple of days when each of his counts drop, first the RBC, then the platelets, and then the WBC. The pain also spikes severely for one to four days after he is active. Active being walking a mile in the neighborhood or riding a stationary bike for a few minutes. He was doing these activities once or twice a month until the made the connection. Now he barely does anything that active. Along with the pain, his face breaks out in a red rash each time preceding the spike in pain. It is like an announcement that the severe pain is coming.
Our doctor at a COE said that he doesn’t have any patient that has pain BECAUSE of the Dacogen or hypomethylating agent. He said it must be the disease process causing the pain and maybe the disease is getting worse. We will find out more after the next BMB in a month. My husband had pain before the Dacogen started and it never went away even when his counts because more normal, so there doesn’t seem to be progression to us, but what do we know. Lastly, He never had a facial rash come and go like this until he started the medications for MDS. He has fatigue commiserate with the bone pain.
Has anyone else had pain that spikes with the low counts or exercise? Any rashes along with the pain? I am so thankful we can share this information and learn from each other’s experiences.
Praying for all of you out there with this disease and for your loved ones.ParticipantHi Bal419,
It sounds like you are frustrated and angry about the care your dad received. His situation is very hard and many of us can understand your frustration. I know it comes from a place of concern and your dad is lucky to have you by his side. It is terrible to think that something could have been done for someone you love when it wasn’t. But before you go too far down that road, it might be helpful to remember a couple of things so that you can stop mentally beating the doctor up now or yourself up later.1. That particular clinical trial is a randomized 1:1 to the control arm of Vidaza or the experimental arm of APR-246 + Vidaza. He would of had a 50/50 chance of either arm, not a guarantee of the new med. Clinical trials can be tricky like that. Often time patients think that they will get something new and better in a clinical trial. Sometimes that is true, sometimes that is not. See NCT03745716.
2. You can still go to a CoE (Center of Excellence) for other clinical trials or to investigate a BMT/SCT.
3. Doctors only know what they know. HMAs (Vidaza and Dacogen) are considered standards of care for most types of MDS. If a doctor isn’t affiliated with a research hospital or clinic, they very often don’t know what is offered there. Our first hematologist was very highly regarded in her field, but did not know ANYTHING about the clinical trials next door nor did she even mention them. Clinical trials are not for everyone and most doctors don’t assume people want them. And children and spouses of the patient only know what they know.
4. This disease has a lot of uncertainty around it. Things that look promising early on, sometimes don’t bear that out when the dust has settled and large studies or real life patients have been watched.
I will pray for your father and you. Hang in there, my friend.
ParticipantKaren, I know there are others more educated on this forum about platelets, but I can tell you what I know. Depending on how MDS affects the individual and the stage of the disease, platelets can be severely affected to the point of needing transfusions a few times a week. Blood can also be needed very often. Also, medication can affect blood and platelet levels. When my husband first started on dacogen he needed four units the second week and one unit of platelets. The range is very wide and varies. At some point for some people, the inability to retain blood and platelets in adequate amounts even with transfusions is what leads to their passing. I suspect you knew that on some level, since this is what happens to the blood and platelet production when your bone marrow is failing from cancer. Lastly, when your white count production is too low, you can get an infection that you cannot fight off. God bless you as you help your mom.
ParticipantHi Alan! Hang in there and gather what info you can before making a decision. It is entirely personal and no one knows the absolute right answer for your situation. The doctors are offering the best they have and they don’t even know if that will work. This message board has lots of experiences to read about. Look up other posts from me for thoughts on transplant. My 53 y/o husbands’ short story is aggressive mutation, high risk MDS with @18 mon to live dx in Aug. 2018 . MD Anderson was very strongly encouraging an allo-transplant all along until the dacogen started working after the 7th cycle. My husband said he didn’t want a transplant. He is now on the 11th cycle and not needing transfusions at this time although he still gets very low white counts during the cycle. When the dacogen stops working, he will try to get on a trial with vidaza and venetoclax or something else. Venetoclax at this time is showing good outcomes with vidaza and dacogen. Feel free to call if you think we can help. 832-540-4214. We tried to go to a support group for post transplants at MD Anderson, but they told me they stopped holding those support group meetings a couple of years ago. They were nice to find us a post-transplant survivor to talk to when I asked for that.
Lastly, the CIBMTR has a decision making page on their site that might help. And those ladies, when I called, were very helpful and honest about post-transplant life should you like to talk to someone else.
ParticipantHi Karen,
I am sorry your mom is going through this. She is lucky to have your support. Platelets going from 245K to 110K, while not great, are not that big of a difference from what my husband’s does during the “good” part of his cycle. Our hospital gives platelet transfusions, which he has needed on occasion, when you hit 12-15K. Could it be that her docs were more concerned about the Hgb.? I hope you get some answers Monday. God bless you, and let us know what happens.ParticipantAlicia,
Oh boy. I am so sorry to hear that. My heart is sad for you. I am going to up my prayers for you and your family. I am glad you have a care team it sounds like you trust. Now consider me part of your prayer team. Please feel free to message me with a specific prayer request/s. 832-540-4214 May God hold you in His hands as you look for the next steps to take. AmyParticipantHi Bobby,
The computer just erased the hour-long research paper I was writing on here to answer the first question you had about the links. I want to give it due credit, but will need to come back another day to write the full “paper.” You are putting me to work with your detailed questions out of concern for your brother. That is nice. I will do my best.
Ok. Starting over..
1. Remember The Hotze clinics did not give him this for high iron. They were seeing him before he had MDS and recommended curcumin for inflammation was having at the time. But to answer your question, they only recommended Hotze vitamins ($65 for 60 soft gels of Curcumin Ultimate- but cheaper than Jadenu if it works!) Anyone can order it.
The NOW turmeric/bromelain blend I had in the cabinet. My husband hardly ever took the NOW version. He liked the doctor-recommended one, not the wife/RN version. 🙂 However, on Amazon it says that each NOW capsule contains 300mg of 95% curcuminoids or 600mg per 2 capsules.
2. On the Hotze vitamin Curcumin Ultimate, 380 mg per 1 gm capsule is curcuminoids as mentioned above (also called 95%/BCM-95) So he took 760mg of that each day in his 2 gram total. Apparently, according to your links above, anything over 500 mg curcuminoids would be considered a high amount. But he never had any problem with the amount that we could tell. FYI -There is no pepper in it, just: A Curcumin proprietary blend that included curcuminoids, turmeric oil, sunflower lecithin and vitamin E.
3. He has not needed any blood since April 23. 2019. His hgb continued to rise at the end of each cycle. He is now in the normal range.
4. He does not do anything to limit iron absorption in his food. A bag of transfused RBCs has 200-250 mg iron. You mentioned that you knew it was the biggest contributor by far of iron and it is. His favorite 6 oz steak only has 5.4 mg. He was eating super clean and healthy, training for triathlons etc. when he developed MDS, so he is not real crazy about going back to a super strict diet – doesn’t see the point unless it is to help him feel better. There is too little iron in food to worry about. The exception is clams and shellfish. They have 25-30 mg per serving. He’d prefer the steak anyway! 🙂
https://www.healthline.com/nutrition/11-healthy-iron-rich-foods#section5
I have some food for thought on the links you sent me to….
On the first page it mentioned that pepper (Bioperine) increased the bioavailability (absorption) of curcumin in one part, but in another part it said that there were other combos that did not have the pepper that had even greater bioavailability than with the pepper. The pages you linked me to gave several reasons why you might want to take the pepper as part of the curcuminoid combination, (relief from depression, various other reasons,) but it didn’t seem to be the most important thing for absorption in our case of iron overload. In short, the curcuminoids/95%/BCM-95% seem to be most important. That designation was even on the NOW brand I mention. I read the pages quickly and will reread them when I have more time to make sure I didn’t miss something crucial about the pepper, but after reading the links I think in our case the pepper is more “optional.”
It won’t let me copy and paste it here. If you are interested, go to the first link you mentioned above and scroll about halfway down to the first green box. Look at the two paragraphs right above that. It explains what I am trying to say, as I realize I am being about as clear as mud.
Tumeric in food wouldn’t have enough. The original link I sent on this thread mentions turmeric cream and said that some people have good results with that, but we have never tried it. We will have to see what happens to Kathy’s levels above.
If I were short on money and wanted to try something, I would try the NOW brand ($11) Tumeric/Bromelain for a few weeks and see what happened. If I had a little more money, I would try the Hotze one ($65) Curcumin Ultimate b/c my husband had ridiculous results with it – near 2400 down to near 1200 ferritin in 9 weeks or so. I wish someone would do a real study on it, but for the time being we will all just try to help each other out. By the way I have no affiliation with Hotze and my husband doesn’t even go there anymore. He just orders this one supplement. God bless you, Amy
ParticipantI realize nowhere in my response did I mention my husband’s pain and fatigue. He had these things both before the meds and now while on them. The meds cause distinct bone pain for certain weeks of the cycle and during that time he needs Tramadol. He naps daily still, even with his HGB/blood approaching normal. The doctor said the fatigue could be disease or side-effect related.
My husband said the cyclical dip in his platelets gives him a flu-like feeling. The cyclical neutropenia just makes him more tired. He also recognizes the agitation on the first several days is medication induced. He is unable to work currently, however, due to side effects and fatigue and neutropenia. The neutropenia has shortened from four weeks to three weeks each cycle. Each cycle he hopes the side effects improve and they do, just very, very incrementally. If we look back at where he was in the spring we see an improvement from that and are grateful.
I post this to validate the symptoms some others may also be having. I know that like any medication, some people have more side effects to it than others.
In short, the pain comes and goes. The fatigue is unrelenting. I wish it was otherwise.
I learn so much from everyone on this forum. Please post your experiences and questions when you can. We all learn from each other.
ParticipantYou are right to ask that question. And the bottom line is that since there is no cure, except for a transplant (HSCT or BMT or SCT), Decitabine and Azacitidine are given to offer the best chance for a period of time without transfusions and hopefully a reduction in blasts, pain and reduction of other symptoms. Additionally, they use it to prepare for a transplant, to extend life without progression to AML or to simply slow progression to AML.
It does take a period of time to start working and herein lies the problem you identified. You have to make it through the initial period to gain any benefit from the medication. The studies say that most respond who will respond do so within the first few months. You saw my note about that in the other thread you started.
And of course it does not work for everyone, nor is it perfect even for those it does “work” for. Yes, for some the first few months can be brutal. On this forum you will find some who have died in the first couple of months of using it and then some who did great. I see more of these good stories than the bad stories. My 52 yr old husband apparently was in the middle to more severe reaction category. In the first month he had a high fever and was in the hospital for 4 days while they tried to figure the cause (ended up being a neurogenic fever, not a real infection), needed six units of blood and multiple IV antibiotics and platelets, broke out severely all over his face and his liver just did not like it. Then there were the GI issues he had. But some people here have had no side effects and saw improvement after the first month. Conversely, it took us 7 cycles and 9 months to see improvement from my husband’s baseline.
The most difficult thing is that no one can pre-determine what your response will be. I have attached another article that can give some guidance, but it is not perfect. You must pray and take in the info and then decide what you think is best for you. You seem to seek the information that is not readily spoken, so that is in your favor and will likely help you make your decision. Being 85 and with whatever your personal health history is and other health problems you may currently have does factor into the equation. You may decide to go on receiving transfusions and no one can tell you that is wrong.
After a while, and I suspect you know this, the transfusions will stop working and you will possibly die from that or an infection or a bleed. But the infections, bleeds, lack of blood and death can happen while on the medication as well. (Or you and I can pass away from anything else – only God knows that.)
On a brighter note, I am getting more and more the impression when reading 2019 studies and articles that we are on the edge of managing MDS and sAML (secondary AML/AML with myelodysplastic changes – what they call AML after MDS) with additional drugs like venetoclax that seem to be showing better promise for controlling symptoms longer than just decitabine and azacitidine. That living with MDS/AML may be more of a goal than curing it outright. And also treating MDS/sAML using other drugs that target specific mutations is looking very promising. I am not sure if the progress will be there quick enough to help my husband or you, but I hope it is.
If I carried on too long, I am sorry. I saw your post sitting out here all alone and thought I’d try to offer two cents. MDS does stink, though. I’ll easily give you that. God bless you. Amy
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