Just got diagnosis a few days ago
Home Demo › forums › Patient Message Board › Just got diagnosis a few days ago
Tagged: AML, clinical trials, MDS, mutations, sAML, transplant
- This topic has 56 replies, 16 voices, and was last updated 1 month, 1 week ago by Amy Clark.
April 11, 2020 at 10:01 am #50564
You found this site and it contains many useful tools for your guidance. It is difficult for any individual here to answer your questions because we are lay people and this disease affects each of us differently.
I was diagnosed in June 2016 at age 64. While I was not as active as you, I did ride bike, take spin class, run on treadmill, play golf( walking 4x/ week), etc.
As I have a normal low blast count, I am on watch and wait approach. I have monthly blood draws and annual bone marrow biopsies. So far my counts remain stable.
Unlike most my sole cytopenia is neutropenia, low white blood count and low absolute neutrophil count. As a result, I must be concerned with infection. Consequently, I’ve been practicing the social distancing routine for the last four yrs., on a limited basis. I no longer go to the gym, avoid sick people, wash my hands, use hand sanitizer etc. I am able to maintain my exercise as my red blood count is low normal and my hemoglobin level is near 12. I’ve invested in a stationary bike and treadmill for my basement and use them during winter or inclement weather. I still play and walk the golf course 4X/week in nice weather.
My routine care is with a local hematologist/ oncologist and I go to a Center of Excellence every 6 months and have my annual BMB done there. My COE dr.is globally renowned.
I’m told that my risk of developing acute myeloid leukemia is very low. Thus my likelihood of dying from MDs is very low. But remember the disease is different for everyone.
My advice, take the time to educate yourself and get to a Center of Excellence. I travel 160 miles each way to a Center of Excellence and it’s worth every second of time.
This disease is complex and there is no one size fits all approach. It took me well over a year to come to grips with my situation.
Best wishesApril 11, 2020 at 1:17 pm #50566
Well, if everyone is different, then there’s no telling as to what I read will apply to my situation. Apples and oranges I suppose. You sound like one of the lucky ones. I hope to be as lucky as you are, although here’s a question. If MDS is incurable but leukemia IS curable, why would developing a curable disease be a bad thing?
I’m seeing one of the COE doctors next week. The other specialist whom I saw a few weeks ago and who gave me the diagnosis, is not on their radar, although I’m told he’s one of the premiere specialists in the country on blood diseases. I’ll see which one I like better although the COE doctor I’m seeing is probably close to retirement from what I understand. I need to do more research as to how they determine who is or isn’t one of their COE recommendations. As with everything in this world, it may be more of a political thing rather than a reflection on a doctor’s knowledge and ability.
I hate to say this, but reading up on this disease is not at all comforting. Rather, the more that I delve into investigating it, the more depressed and morbid I become. It doesn’t seem to be a situation where if you change such and such behavior or do this, that or the other thing, that’s its going to make any difference. Correct me if I’m wrong, but MDS is going to do what its going to do and there’s nothing in my control that can do anything about it. So, as the disease affects everyone differently, I’m sure the knowledge affects everyone differently, and the more I hear, the more I think I should go out and catch COVID19 and be done with it sooner rather than later.
Other than on this forum, where it seems there is little traffic or conversation, do they have support groups in the country where people meet up with each other? Obviously, not now, where we are all trapped at home, but in normal times?
So, that BMB wasn’t a one-time thing? Oh, great. That hurt and I was really sore for a few days afterwards. The two things which I’m thinking that are most upsetting to me, are 1 – I’m going to have to give up all of my activities, which aside from them being what my life is and where I get all of my enjoyment, its also the center of my social world. Almost all of my friends are the people that I play sports with and go out dancing with. Take away that, and I lose all of my enjoyment and my relationships. Then 2 – anything in which you need a support person, whether its taking you to doctor’s appointments or treatments, etc. I don’t have any family to rely on and if its imperative to have help with numerous things, I’m SOL. Its one thing if I have to ask a friend for an occasional favor, but not to the point where I’m going to need continuous assistance.April 11, 2020 at 5:25 pm #50567
You are newly diagnosed and understandably emotional. We all go through this phase. Education and seeing an expert in the disease are paramount to getting a better understanding of your particular situation. It was explained to me that MDS while not curable is treatable. If MDS progresses to acute myeloid leukemia then a bone marrow transplant may be an option for cure. But you can live with MDS with appropriate treatment.
You are correct I am lucky, 4 yrs. no treatment. Lousy white blood counts but stable. Without being anemic, I am still able to do many physical things that I could do previously. But we all have a cross to bear when we develop MDS. While I can do many things I need to refrain from going to many functions of my 8 grandkids. No concerts, plays or anything that involves being in a crowd. I cant take them to a waterpark for fear of infection.
MDS changes your life, no doubt, but it doesn’t have to control it. Its not easy. But you have to learn how to live with it. As I said previously, it took me well over a year to come to grips with my situation. Watch and wait, while it sounds rosy, is itself unnerving as we are programmed to think that if I’m not getting treatment then I’m not doing all I can to improve. Like you, I was told there are no lifestyle changes that can make the disease get better. That is tough to hear – no doubt. Also tough to hear that the experts can’t explain how we developed MDS.
Regarding BMB, my first was done locally with mild sedation ~ no issues other than no driving the day of. My four subsequent BMBs ( at COE) were without sedation and progressively got less painful. The first of these was painful (7/16). The last (11/19) I had to ask if the Dr. started yet. I was able to drive home after each of them. No pain subsequent to completion of the procedure.
Hang in there and Best WishesApril 11, 2020 at 6:47 pm #50568
No concerts, plays or being in a crowd. I’m sure that will be great for my dating life. Pleased to meet you. Would you like to go out with me, just no place where there are any people.
I’ll see what I learn in a few days when I see this doctor. Meanwhile, I took a two block walk this afternoon and felt like I was going to have a heart attack. Trying to keep an open mind but I can’t imagine giving up everything that I love doing and being able to adapt to that, if that’s the case.
Can you travel or is getting on a plane or a ship out too?April 17, 2020 at 1:17 pm #50604
My MDS turned into AML. I’m in the hospital and getting the first of 3 chemotherapy treatments today. Supposed to be here for 4-6 weeks. They haven’t told me what happens after that but honestly, I’m not thinking that far ahead and I really don’t want to know. They’ve told me that because I’m young and in good shape and my heart is in good shape, that should help. I’m trying to manage my emotions and have been hearing from many friends, which is helpful, since I have no family. They say I’m going to lose all of my hair, which is my best feature. Oh, well, as long as I can get cured or go into remission, I don’t care. I’m trying to not have anxiety attacks, but frankly, I’m petrified. I’ve never been admitted to a hospital before. Worst thing that ever happened to me was a kidney stone and a broken arm when I was 15.April 17, 2020 at 9:31 pm #50606
Sorry to hear of progression to AML. It’s good that you are young and in good shape and that you have many friends for support. You may potentially be a candidate for transplant.
Best wishes, stay positive.April 22, 2020 at 7:48 am #50695justa0Participant
I am so sorry to hear about your AML. When I said, ‘There is more to this life’, I meant what is inside you. You know eternity exists but you cannot not explain it with anything from this world. Concerning the two options available for defining why we are here, chance creation of the universe or divine creation by design, the choice is available to everyone to decide. I’m 68 years old and have a high risk of AML. I searched for this designer and was found, now I have a hope of eternal life with this creator. Perhaps, speaking with a hospital chaplain would help you. Your hair grows back after chemo. I will keep you my prayers.April 25, 2020 at 6:57 pm #50701Susan PaolilliParticipant
Hi Mark! I am 73. I was diagnosed 1 yr ago with abnormal blood cells and low neutrophils (neutropenia). The only reason I discovered the problem was that I was constantly getting a cold! Imagine my surprise when I was told by 3 doctors that there was no treatment for MDS but come back in 6 months so they can follow the progression! I am not one to take a back seat in life so I started researching and learning about this condition and how there are treatment options in “alt med”. I am on an herbal and acupuncture protocol which has normalized my neutrophils, HCT, and HG. Although I still have slightly low whites, my hematologist tells me I am now stable. I am not deluded that I am cured because I know that MDS is related to age and immune system strength but I have found some treatments that have worked for me so far. I hope this helps.May 1, 2020 at 6:33 pm #50757Amy S.Participant
I was also diagnosed with MDS about 6 months ago. I am currently under treatment. Would you share information on the herbal and acupuncture protocol that help to improve your condition? Thank for any information.May 3, 2020 at 7:23 pm #50758DonnaParticipant
Hi Mark……It is frightening when you first get this diagnosis, but there are different kinds of MDS and different roads and different outcomes. I was sent to the hematologist/oncologist in 2013 when my white blood count was down to 3.8. The cells have different jobs and in our case our bone marrow is making some defective cells and then they can multiple, crowding out the good cells. Briefly white blood cells help fight infection; platelets help with clotting your blood and red blood cells carry oxygen to all out organs. So you will follow WBC, RBC and platelet counts on your CBC (complete blood count). You will have occasional bone marrow biopsies which will tell the doctors where you are in the spectrum and along with other measures, you will find out if you are low, medium or high risk for developing AML (acute myeloid leukemia). I was followed about every 6 months, then in 2019 my bone marrow biopsy showed advancement of disease and I started chemo, 5 days/week every 4 weeks. I am a nurse and was by that time doing a desk job and was perfectly capable of working, but my energy was less. I started going to bed earlier and pacing myself. On my chemo weeks, I work from home. Currently I am layed off. You will adjust. When my WBC (mostly neutrophils) are very low, my MD wants me to keep social distance, like everyone is doing now. My blasts have not been above 5%, but I am not a candidate for transplant due to age. You may become a candidate, or you may not progress for many years like me. I too loved to dance which I don’t do now but I did take up the ukulele. You will be able to do some activities, maybe modified a bit. Life is not over. I just call is my “new okay”. DonnaMay 3, 2020 at 8:00 pm #50759DonnaParticipant
Mark….I am sorry that you progressed to AML. I didn’t notice there was another page for these posts and my post just above isn’t very relevant at this point. My error. I hope you will be a candidate for transplant, as it sounds like you would like very much to get back to all your sports and physical activities. I don’t know much about how you feel after the transplant, but I wish you well. DonnaMay 12, 2020 at 6:42 pm #50841
Had the first round of chemo and it did not put me into remission. Started 2nd round today, with dose one and second one to follow in two days. According to the head doctor treating my case, the chance of it working is 40%. The drug being used is Vyxeos. Evidently, if this second treatment doesn’t work, all that might be left is experimental treatment. I’m trying to stay hopeful but it doesn’t look good.May 12, 2020 at 7:19 pm #50842Rita KnopickParticipant
Good to hear from you Mark. I wondered how you were doing. Keep the faith that the second round will work for you. I am sending you good vibes and some prayers also. I understand that they are having some good results with some of the experimental treatments also. Stay hopeful.May 12, 2020 at 8:48 pm #50843
I am trying my best but its very difficult, especially now, where I cannot have any visitors. I really could use my friends now to keep my spirits up.May 13, 2020 at 7:03 am #50844justa0Participant
Yeah, for you. Hope is good. Love is eternal
Register for an account, or login to post to our message boards. Click here.
- You must be logged in to reply to this topic.