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To 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.
My 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.
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.
Karen, 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.
Hi 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.
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.
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. Amy
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! 🙂
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
I 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.
You 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
Well, Clement Rose, that is/was the million dollar question for many of us. We feel your angst.
My husband didn’t really want to start it either. The other choice was to stay on the Aranesp injections which after a couple of months hadn’t done anything and he was needing more blood transfusions than before. Blasts were at 6% and the doctor gave us 7 medical articles/studies highlighting how bad ASXL1 was. We were newbies. We all are. In hindsight, we may have needed to give the Aranesp more time. But… We made the best decision we could with the info we had at the time and knew that we couldn’t look back with regret, because we never will know what would have happened.
We decided to go with the Dacogen.
We found general info for some mutations’ predicted response to hypomethylating agents (Dacogen/Vidaza) when the mutations were looked at individually, but no study that took the combination of mutations into account. And keep in mind that even these studies only often account for the first 4-6 cycles. His mutation did not look like a good responder to HMAs, but it was a better option than Aranesp we thought.
My husband was not showing much response during the first 6 cycles, in fact he was worse and progressed the first two months, but told the doctor he wanted to stay on for at least 7 cycles because of articles we had read early on that said sometimes the response is delayed. Guess what, after the 7th cycle there was a def. uptick in the RBCs. He is now on cycle 10 and we will ride this until his MDS progresses or he develops leukemia. At that point he will look for another clinical trial, probably one with Venetoclax.
At our visit last week the doctor told us that he was glad we were patient people, as he was not a patient doctor. He strongly, strongly encouraged my husband to have a HSCT several times while he was on the Dacogen. But my husband and I told him that from what we were reading, the relapse and death rate from HSCT for the ASXL1 mutation and several other reasons warranted us giving this med a good long run.
Ha! Look at this. I just paused writing and googled a bit and this article popped up. Here is one recent study by a doctor at the Cleveland Clinic who is trying to find the answer to what you are asking in your topic question using several combinations of biomarkers. Maybe there is info here that can help.
I will pray for you to have a clear direction. These decisions are so personal and can be very difficult. There is no one-size-fits-all answer. God bless you.
I am so sorry to hear that your levels have turned low again. I have been praying for you. I called my friend whose husband relapsed after his HSCT and she said his symptoms were extreme pain in the hips and shortness of breath. His MDS returned as AML, 56 days after the HSCT.
I will pray that there are some answers and options when you get the results of the BM.
- This reply was modified 4 months, 2 weeks ago by Amy Clark.
Sorry for the delay in responding. I did not see this post for a while and then was waiting for the Sept. 18th lab report with a ferritin level in it. To answer your questions..
1. He was taking Cucumin Turmeric capsules sold by a local doctor, Dr. Hotze, or the Now brand Turmeric Bromelain capsules from CVS/Amazon/etc.
2. He was and still takes 2 g (2000mg) a day, split into two 1 g (1000mg) doses. The Now brand comes in 600mg, so he would take 3 total. The dosage wasn’t always exact. He took turmeric almost every day.
3. He ferritin was highest in mid-April at 2321. He had one more transfusion after that on April 23rd. He has not had any transfusions since then. (PTL!) He started the turmeric right around this time, as the Jadenu had to be stopped due to high ALT levels.
4. After the June ferritin of 1200, they did not measure his ferritin until this month, Sept. His ferritin level last week was 1120.
Considering the turmeric lowered his levels by half in a couple of months, he would do it again, but we are obviously a bit surprised it hasn’t continued going down since June. He will keep taking the turmeric though, b/c it also helps with general inflammation and he notices a difference in his bone pain if he doesn’t take it.
As I am writing this I am wondering if the article I mentioned above has any more info about dosages of turmeric. Maybe a higher dose is needed to remove more? Maybe a lower dose over a longer period?
I hope this info helps someone. God bless you all.
PS When we receive his latest bone marrow biopsy results, I will post an update about his overall journey up to this point. We see the doctor next Wed.
I am sorry to be late in replying. We have not had any experience with swallowing problems as a side effect of the meds my husband has taken, but would encourage you to contact your father’s doctor. With your father’s platelets being so low and his transfusions being so frequent, you are likely concerned that these are all symptoms of disease progression and end of life issues. Hopefully that is not the case, but you obviously care enough about him to find out if there is something else that can be done or how to help him from this point on. He is blessed to have you by his side. God bless you.
Rose, I was relieved to hear from you on the GVHD thread and now this one, albeit sad he is having trouble on a daily basis from GVHD at this point. Thanks for updating all of us. We really do want to hear and will keep praying for a good outcome from this point on and relief from the GVHD. I had read too that the chimerism reports after a HSCT can fluctuate for awhile and was surprised to find that out. Hopefully day 180 will bring better news. God bless you, Amy