Last time I was on the board I was undergoing what I had hoped would be my last consolidation chemo treatment. Had a BMB 4/18 and learned 4/20 that I am in remission. While very happy about this also very scared. Will I relapse, if so when? I know I should be happy and just live in the moment but very hard to do. I have Acute Monocytic Leukemia with the NPM1 mutation. Anyone else on here that has gone thru what I am now? Would love the feedback.
I have AML-M1, which doesn't sound too different from your AML-M5, and we both have the NPM1 mutation. In my brand of AML the latter is considered a good thing, indicative of a better chance of remission. But then I also have the FLT3 mutation, which has traditionally been a one-way ticket to relapse. I was diagnosed at Thanksgiving in 2011.
Your message made me think about what I'd do about relapses after being declared in remission. That's a state which I may just now be achieving, after four inductions and 14 weeks of hospitalization. I had a biopsy today, and the results are pending, but my peripheral blood test (CBC diff) reported no blasts.
First of all, I think the worry about relapse is something we can never get rid of. I have it, and it arises occasionally, but I think I push it off to the side by focusing on all my other thoughts about leukemia.
Those thoughts include, foremost, a positive attitude. To tell the truth, I don't know where the hell that positive attitude came from. I got my diagnosis, and I just told everyone that I was going to fight it...and fight it with a smile.
In support of that attitude, I try to find humor in everything. I watch or listen to things that are funny. I try to keep the hospital staff entertained (14 weeks of me would otherwise drive them all nuts). I write or share funny e-mails.
Two of the other things that have become important are knowledge and networking:
-- I don't have any background in medicine, but I read and learn all I can about AML treatment and the experience of others. I can't absorb it all at once, either, so I keep going back and reading.
-- And I network, sometimes on this site, but also with my relatives via e-mail. In the latter case, I try to report the positive efforts and positive gains that are being made. Yes, I'll admit that networking's rewards include moral support....and that support has become as vital to me as any pill I could take. (That's one of the surprising side-effects of coming down with a disease like leukemia...at least it was for me.)
The one thought that I keep in reserve, I guess, is that if I do have a relapse I will be tough enough to fight it and win. After all the stuff that you and I have been through, and the successes that eventually came, it's kind of hard not to have a "can do" attitude.
Best of luck to you. Keep us posted.
Message was edited by: Robert Fulkerson (Filled in some blanks and fixed some wording. When I first wrote it, I lost my train of thought and had trouble finding the right words to use...is that chemo brain?)
Thank you for the reply. Your right about finding humor in everything. My family sometimes gets annoyed with that but that is how I have to handle things!. Like you I spent time in the hospital (6 days) during the consolidation would be home for 10 to 12 days then be in our local community hospital for anywhere from 7 to 10 days with a neutrophenic temp. So seems like the last 9 months at least half of it was in the hospital. Glad that is over with.
The net-working definetly helps me get through. Also I had started writing and doing some poetry back in December which has also gotten me thru. To be able to express yourself in writing when you can't verbally has for me been a HUGE help. One of my poems is going to be published in the hospital book "Poems of Health and Illnesses". It is written by cancer patients, survivors, and caregivers.
Now that the chemo is done and the remission is here I am scared but I am also relieved at the same time. I have thrown myself into sewing and making purses which I hope to get into a local consignment/craft store. I have been told I should be able to go back to work around the beginning of July sometime which given the fact I left the end of July last year is going to be bittersweet. When I was first diagnosed being the oldest of 6 all of my siblings were tested for matches. None of them were a match but yet 4 of us have degenerative disc disease (something I am just dealing with now and had an MRI for this past Monday) go figure. Something that is hurtful we all have but something that could be helpful we don't.
I have found my new purpose in life is to try to make people laugh and to not sweat the small things. I also have written to a couple of my counties representatives to try to get some laws changed/reversed or whatever we can do to make better for someone else who has to travel this "cancer path".
Well keep in touch and let me know how you are doing.
Everyone who is in remission worries about relapse. I never got to the consolidation phase so doctors recommended stem cell transplant. I was lucky, my brother was a 10 point match.
I remember being an in patient and having the doctor tell me the blasts were higher than when I started chemo. (I am an aml patient). I told him that if I was going to die to just let me go home. He just chuckled and said they had lots of other stuff to treat me with.
I'm 18 months out from transplant and doing great. I still worry about relapse but my wife tells me with stem cell transplant it doesn't happen. I know better. My local doctor says that everyone with cancer worries about relapse, especially the closer we are to having been treated and started remission.
So even if you do relapse, the doctors have lots of stuff to throw at your disease. Living in the moment is tough, but it's really all any of us has anyway. Even healthy people die. So keep your chin up and be grateful for each day. You will make it.
Thank you. Your right even the healthy folks die. You could go out and cross the road and get struck and killed.
I have been focusing on the positives and just living life to the fullest. Your lucky your brother was a match, and 10 points wow. I am the oldes of 6 and not one of my siblings were even close enough to consider that is why we opted to do the consolidation first. Less side effects than with an unrelated donor.
Take care of yourself!
I am where you are now. I just finished my 4th consolidation treatment and I had a bone marrow biopsy the beginning of April and it was "normal". It feels weird going from treatment mode to recovery mode. I was so focused on getting through treatment that I do not know what to do now that I am done. I am so thankful to be in remission but the specter of "relapse" has me very scared. I was a basket case yesterday, today I am doing better. I am trying to focus on the small things as I recover and it is very helpful that it is spring here and the flowers are blooming and the birds are singing. I am trying to focus on little things each day and continue to remind myself to be thankful I am here and in remission. Thank you for posting it is good to know one is not alone. I am always amazed by the courage and strength of those that post here, it helps me as I continue on this journey.
"I was so focused on getting through treatment that I do not know what to do now that I am done. "
Exactly! I've been doing that, too, at least part of the time. A handful of honey-dos and shopping lists are about the only structure in my life lately. Didn't realize it, or not as clearly as you just put it. I wonder what's involved....fatigue, decompression, adrenaline letdown?
I was thinking about the reason of the big letdown after treatment. I think it is all you mentioned above. I was so geared up to meet each challenge of treatment, the chemo, and the resulting neutropenic fevers that at the end of it I was at a loss. Now I have to gear up to enter back into "normal" life, but it is hard to know which direction to start. However as everyone shares their thoughts and experiences it has helped immensely. I guess it will just take awhile.
Three weeks after getting out of the hospital, I'm just starting to feel like I'm back into a normal routine. Too bad that our late-April weather was a bit too cool and windy yesterday, or I would have been out gardening and washing my car. Not quite up to taking on any heavy work, though. Ended up helping my wife do some spring cleaning around the house, and even that wore me out. 14 weeks in the hospital must have weakened my muscles a bit.
Another interesting aside, although you may not exactly find it applicable: I'm now 6 weeks post-chemo, which I've never been before, and yesterday I actually had to shave for the first time in months.
Now I just have to figure out why the chemo takes all the hair except the eyelashes
I hope you've cleared gardening with your doc. Getting down with all the fungus and mold is not usually recommended with a compromised immune system. The problem might not be as severe post-AML as it is post-transplant and I completed my induction in December so there wasn't much reason to ask about gardening. Just be sure it's okay.
I didn't lose all my hair with induction; I had about half the hair remain on my head. Now, the conditioning chemo for transplant, if you go that route, will probably take your eyelashes and even the hair outta your nose. Having lived through that, don't wonder, just be glad you're not having to deal with that.
Tex, my 'gardening' plan consists of scattering some wildflower seeds and then shoveling a light layer of potting soil over them. No contact with yucky dirt envisioned.
You're right about fungus and molds...those have given me enough problems already during the neutropenic phases.
Yes, it's almost too late for seeding now. I bought the seeds last year with the intention of planting them at Thanksgiving. That didn't happen, but I still want to give them a chance at life.
You might want to give them 'til next fall or don't seeds retain viability that long? (I'm a real Old McDonald, as you might tell.)
The problems my docs had with dirt was the possibility of it becoming airborne while digging and it getting in via my nose. So, even if you're just spreading dirt, you might want to wear a good mask this once.
I don't know the real problem, I just know -- again, this was after my SCT as the issue didn't arise before then -- that's what they told me. I really don't know how much applies post-induction.
I went home after chemo and before sct and my leukemia doctor told me humorously not to shovel hay. My wife freaked when I cut the yard the morning before I went back to MD for more chemo. I survived that. I was not until after sct that I was told no gardening by the survivor nurse. I took all their advice quite seriously. People die from sct either because of gvhd or infection. One you can't do anything about, the other is pretty much in your control.
After my stem cell transplant, I was told no gardening for a year. I waited like my doctors said, and even had someone cut the lawn for me.
I've been out this year digging in the soil, moving rocks and just having a good ole time. Of course I'm much more careful with chemicals these days. Gloves are a must, and a shower right after any bug spray, weedkiller.
It was well worth waiting a year. Last year, I had my daugher Kaela dig the holes etc.
Do whatever your doctors say. They know their stuff.
P. S. I was also told no vacuuming or housework as the dust could infect me. That was sweet.
Heck I had my mustache fall out one morning and lost all my hair. It was weird, but I was too weak to care, and everyone treated me like a king anyway.
I remember going places and dreading wearing the mask. I was at the Houston Zoo riding the train without my mask. I saw a child who was wearing his and he gave me the courage to put mine on. Inspiration to do what is right came from a child.
So when you think you got it tough. think of the children with leukemia. It gives a little perspective.
"If only I could touch the hem of his garment."
Heck I had my mustache fall out one morning and lost all my hair.
I'm a beard stroker. I was just doing my thing one afternoon and it started coming out as I was doing my thing. Weird as I was used to moving my hand a bit and being out of hair. Now it was coming with me.
Thanks so much for the kind words in your other post. That really means a lot and I hope your continued recovery goes well.
Hi! Your not alone, and I completely know what you mean about being a basket case one day and "fine" the next. I have emerged myself into sewing and hope that I will be able to put some of my creations (lined purses that are reversible) into a consignment/craft shop. I will be returning to work (Hopefully) the beginning of July.
April 10th we discovered I have degenerative disc disease which is hereditary. Had an MRI this past Monday and will learn the results from that May 3rd when I go in for all my other results from my BMB.
I have found that my new purpose in life is to try to make everyone that I meet laugh. I have also approached a couple of Representatives for my county to try to get some laws reviewed/changed so that others that are in my shoes do not have to go thru what I have had to as far as work/getting assistance go.
Good wishes to you and please keep me posted and updated.
I hope your MRI goes well and that all is clear with your BMB. The last 2 times they have done the BMB, I was so anxious about the results, I guess I will be feeling that way for awhile. I am glad you had a hobby to focus on during your treatment. I had just learned to knit the few months before my diagnosis and it was a god send, it really helped me get through my days in the hospital.
It does pass. I'm over eight years from my dx and nearing the same anniversary for my SCT. After awhile you begin to assume today will be like yesterday and that tomorrow won't hold any big surprises. (Knock wood...I'm still concerned about jinxing it by being too cocky. )
But I do know the obsession about relapsing is real and it lasts a good while. And why wouldn't it? We know that relapse is a possibility and we've probably never been more scared than we have been the past few weeks. Who wouldn't be? And who would want it back?
What I'm saying is what you're feeling is about as natural for us as getting hungry. The feelings are going to creep up on us and, sometimes, dominate our consciousness. The best thing to do is strap in and wait for the ride to end.
The good news is that we can get our minds off of it for periods. Some folks go to moves, some learn to tune it out, I would just have a little talk with myself and ask if this is how I wanted to spend today if I were to find out tomorrow that I had relapsed. For me, that worked. Usually. For awhile.
It's a tough road but it's been traveled by many before you who've gotten to the destination they were driving towards. You're going to be fine but you're going to worry. Try to keep it in perspective the best you can and, someday, you'll be trying to remember exactly what it was like when you're talking to a relative newbie about his concerns.
There isn't a day that goes by without the thought of relapse, for me. I had my last round of chemo on December 10th and released from the hospital after a violent pneumonia January 9th.
The first couple of months I was recovering and feeling my strength coming back. Now that I feel so much better physically, the fear of relapse is much more present, oddly enough.
Tex, I LOVE your way of thinking. When I have those times of fear (more like terror), I'll think - is that the way I want to spend today.
I'd like to fast forward to 2-3 years from now, when relapse is merely a very very very remote possibility.
I'd like to fast forward to 2-3 years from now, when relapse is merely a very very very remote possibility.
I understand the thought. On the other hand, the first years following my SCT were some of the most unbelievable miraculous days I've had in my life. The healing taking place, the concern that's expressed for you by others (and the joy they have that you're better) are important. The process of healing and regaining strength is a divine dance. (I have no idea why I'm felling so "poetic" today. )
All I'm saying is that every experience has uniqueness and significance. We just have to really look under the rug in some situations to find it.
Oh, crap. I know you were just blue-skying. I'm just really feeling literary today.
Just live in the day you've got before you.
TEX: "All I'm saying is that every experience has uniqueness and significance. We just have to really look under the rug in some situations to find it."
This is probably just an aside, but I *have* looked under the rug. Before the leukemia, my principal hobby was family history. That educated me about the genes I've inherited, and what kinds of strengths my ancestors possessed as they made their way through life in the "olden days" when things were not quite as easy.
One great-grandfather, for instance, was a POW for 10 months during the Revolution. The British held him in the Sugar House in New York, an unheated, 3-story stone building. To keep from freezing during the winter, the prisoners joined arms and marched forward and backward across their cell. Many Americans died in those brutal conditions, but my ancestor survived it.
Twenty five years later he received a reward for his service, a square mile of land in upstate New York where he built a farm, an inn and several grain mills. His strength and endurance carried forward. He lived into his 80s, and the farm is still in the family. Better yet, my cousin who now lives there planted it with vineyards and operates it as a winery (http://www.fulkersonwinery.com/).
So that's one more bit of strength I draw upon -- I know what I'm made of. Once I learned that, I spent a lot of time and effort to help pass on that knowledge because I thought it was important to know what strengths we've inherited. My family has been in America for 388 years. That isn't a snobbish brag -- we were all farmers until the 1900s. But there are thousands of descendants now, and most of them have only scant knowledge of their ancestry. So I built the site at http://www.fulkerson.org/.
Yes, I had a head start in this arena before I got leukemia. But I'd encourage those who feel up to it to learn a bit more about where they came from, and what hidden strengths they inherited from those who have gone before. It can make you feel a little less alone in your battle against this disease.
PS/ One other way to deal with life's frustrations is humor. So if you don't have any ancestors, but you do have plenty of pocket change, I've got you covered at http://www.fulkerson.org/ancestors/buyanancestor.html
Quite an interesting post. It should remind all of us just how fortunate we are to be here at all. One slight change in fortune, and the ancestor that begat the one who begat who begat and eventually begat us and we would not be here.
My Dad, which is about as far back as I know anything about, served in WWII and Korea. One bullet could have wiped out my chances of even being here. He also served in Vietnam, while I was a teen, and eventually died of prostate cancer. I was not near as strong as he but tried to let the way he handled his death from cancer inspire me. Advice from my brother when I was particularly scared and down really helped. He told me that the way I handled this would have a profound impact on my children. His advise and that of others made me start behaving positively in front of my family and others who needed to see me "happy".
There is so much which could be written about each day of my recovery. Tex is right. It is a divine dance. Enjoy it. You have been blessed in a way that no other can imagine.
There's at least one strain of alcoholism in my family, so I've got plenty of ancestors. I wouldn't mind trading in the drunks, though. Do you have a used ancestor lot so I could work out a deal?
It's good to know our strengths. Just remember while you've got some genetic backing, the fight comes from you.
You all have such different perspectives surrounding the fear of relapse. It is great reading all your stories. I love the ancestor stories and the focusing on their strength and doing our best to pass on that strength to those around us. I visited my workplace and co-workers for the first time yesterday and it was very bittersweet. I was anxious about dissolving into tears, some tears were shed but I held up better than I thought. So I am taking little steps back into "normal" life but I will be forever changed.
Bob: I really enjoyed the " buy an ancestor" website, it made my day
You're all great. it's amazing to feel such support from people who have been through the same things. I think one of the (many) tough things about AML is that there aren't many people around who have gone through it. I remember that being really hard during diagnosis and treatment, those in the hospital were mostly older men (I am 42), and it took me a while to find this board.
Last night, as I was driving back from an action-packed and great day at work, I had one of those moments of fear. I was exhausted from work, and immediately thought - what if this is relapse? And then I thought - how am I going to live like this for a couple of years, with this fear? And then I remembered the question - is this how I want to spend the day before relapse, if it is indeed relapse.
For me I also feel I can't really share this with my family and friends or even with my husband. It's very very foreign to them. And I don't want to worry or scare them. They've also been through a lot. And they're all SO happy to see me active and feeling well and looking as if nothing happened (except for having short hair).
Who do you find supports you in your life?
Zkat, I've pretty much shared everything with all of my family, friends, etcetera. All the ups and downs, all the bad blast counts, all the plans, all the risks and prognoses. I've received a lot of support and encouragement from them. I've also recently shared this "Worried about relapse" thread with my wife, father, sisters and children.
As Zann said above, this AML forever changes us...especially how we view the future. The one thing it shouldn't do is change you into going it alone. You do have this message board, but frankly that isn't enough for any of us. Include your spouse in your new life, and at least a few of your family and friends.
It shouldn't "worry or scare them" that you are trying to spend each day 'living in the moment.' Tell them that's what you're doing, and then explain why. And tell them that if you do someday have a relapse, by that time there will be newer and more effective drugs to help you get through the crisis, because that's the truth. If not for one of those newer drugs, I wouldn't be here -- I might have just given up after the 3rd induction failed in February.
To me, trying to go it alone is another form of giving up: giving up some of the strength and closeness you found when you fought the AML, and which you and the rest of us still need regardless of whether we ever have a relapse.
You wrote "For me I also feel I can't really share this with my family and friends or even with my husband. It's very very foreign to them. And I don't want to worry or scare them. They've also been through a lot. And they're all SO happy to see me active and feeling well and looking as if nothing happened (except for having short hair)."
My sentiments exactly. It is not that I want to go thru this phase alone it is just that I don't want to worry or scare them. And your right it is foreign to them. Yes they were there with us during the treatments and everything but not in our heads. My Mom is semi house bound and did not visit me in the hospital or at home imeediately upon my release so she has only seen the side of me when I go visit her that is bubbly and fun loving. For me to try to talk to her right now about relapse would be like putting peanut butter on prime rib. LOL
I spent my day yesterday outside doing a little yard work and working side by side with the husband to get the boat out of the barn. When I gave him a huge hug I was asked what that was for, I told him I was just thankful to be alive and in the moment. (If that makes sense).
I meet with my Oncologist this Thursday to get ALL of my results from my BMB as well as a recent MRI for my back. Yes now I am having back issues and believe in reading some of the MRI results (I can log into my health pages and read my results right from the hospital) I believe I have a herniated disc. Something is definetly out of wack. Anyway I have been sewing and making reversable purses, just took a beading class and hope to resume my writing class also on Thursday which all of this helps keep me busy and focused on other things in my life. I went last week and taught my 14 year old niece how to make a purse. She did not want hers reversable which was fine we just had a lining in it anyway. So I guess what I am saying is that I am dealing with the thougts of relapse the best I know how. I try to remain focused on the positives and if I have a bad day then I try to look at everything I should be grateful for and if that doesn't work I call either one of my daughters or my 4 year old grandson and that always helps.
Thank you for sharing. It is nice to know we are not alone in this journey of our lives.
I have found that sharing my feelings with my family has been important, my husband shared with me he has the same fear about relapse, but that we will face it together if that happens. I know it is also important to show your family that you are starting to do things again, and gaining strength as each day passes. I am not sure I am finding the right words to express myself here. I just know I have gained strength from being able to share my feelings with my family and that they are able to share them with me. I also have found my friends are a good place to share thoughts and gain support, nobody truly understands unless they have also experienced the same thing. That is why I find this sight so insightful and helpful.
I don't discuss the fear of relapse with anyone except my wife. My children don't need to be put through any more hell. The year of my treatment and failure to achieve remission after my first chemo has been enough for them I think.
Even my wife is hesitant to accept that relapse is a possibility. She keeps telling me that SCT patients rarely relapse. I pray I'm one that doesn't. However, I've seen the stats for SCT and it always says success rates are for those who don't relapse. So it must happen I'm sure.
At 18 months out, I am so grateful for so many things I've gotten to do in the 18 months. I saw another grandson be born, fed another ice cream at a baseball game, watched my middle son graduate from med school, my oldest daughter start really doing well in college. I celebrated a 30th and 31st anniversary, and two valentine days. My youngest daughter graduates from high school in a month. My youngest son got his masters a couple of days ago and will be married this August. I went back to work in August and was named Teacher of the year at my campus. All these things might not have happened if I had relapsed. So I have so much to be grateful for already with just 18 months added to my life. If I relapse, God forbid, I'll just have to be grateful for what the good doctors with God's help have given me.
Well, too many people relapse after a transplant. I don't understand how it works. It kind of seems like some disease cells were able to hide out from the conditioning chemo and the new marrow isn't strong enough to fight those cells off. Or there's graft failure and the disease is able to reestablish itself.
It isn't the most common response by any means. It does happen, though.
The thing is, if you relapse, you won't only have the option of being thankful for what you got. There are a number of tricks in their bags they can pull out to fight back. The bottom line is we have today, or at least part of it. Deal with the future when it arrives. You can't deal with it before then, anyway.
Agree. One is too many.
My chemo regimen was a clinical trial at MD Anderson. Before they administered the deadly chemo, they stimulated the bone marrow to shoot out as much leukemic cells as possible hoping to drive them all out of the marrow and bone where they hide. It meant a few extra days inpatient, but seemed to me to make sense. Don't know if this being done much anywhere else or even at MD. I was put into the clinical past the dose testing phase, and it's been 18 months so I'm guessing they are doing this more now than not.
It's great your family is supportive. I know a lot of us read reports from folks like you and sigh wishing there was any support within our family, let alone specific support for us.
I don't know if people with functional families can even imagine what a dysfunctional environment is like. And vice versa. When you only know a f-ed up family life, it's hard to imagine what it's like to live in one that's not.
Most families are in the middle somewhere. Even some fairly functional families don't want to hear about our recovery and emotional issues. They want to be done with our lives so they can get back to theirs. It's normal.
I guess I'm just saying count your lucky stars that your family is where they are. Not many of us experience that.
I'm a little late to the party, but wanted to let you know I was sitting in your shoes just over three years ago. I had AML M5, treated with induction and four consolidations with HiDAC. I had my last chemo at the end of March, 2009. I likened the feeling of finishing treatment to the sensation one would have crossing a busy highway with someone holding your hand, and in the middle of the road, they let go and take off! It's a disconcerting feeling to have so much intensive treatment and then - nothing but blood checks.
Just be patient with yourself as you pick up the pieces of your life and regain your health. It took me a long time to regain my strength and especially, my stamina. I had to learn how to say, "that's all I can do today". I had to learn to do projects piecemeal, chipping away at them until I got them done. I still do that today.
I worked quite a bit on regaining the ability to focus and concentrate by reading, doing puzzles and brain teasers, even playing the old computer game Tetris because it helped me get better at concentrating for longer and longer periods of time. I increased my physical activity slowly and reveled in the ability to be outside again and working in my flower beds once my counts were ok again and I got the "all clear" from my doctor.
It is a long journey back, both physically and emotionally. Others will never understand what it's like to have the specter of relapse hanging over your head constantly. It does get easier to deal with as time goes on, and you will gain a measure of confidence with each good blood test. I feel less like I'm standing underneath a piano suspended by a fraying rope these days, but it's taken quite a while to get to this point, and I still have my moments.
Try to find the joy in each day now that you have a hard-won and new-found understanding of what is really important in life. It's an unexpected gift in the midst of a lot of turmoil. Hang onto your new perspective as you heal.