Well i finished up my last round of consolidation april 14th and my counts returned around may 2nd.. ive been home from the hospital now for two weeks and at first things were great and i felt like i was starting to pick up the peices of my life again, but today i noticed a bruise on my leg and can not stop thinking about relapse. Im going in to see the Doc in about a week for my first blood check , but part of me wants to call and ask if i can come this week so i can put my mind at ease. My fiance tells me that im " just fine and freaking out for no reason" but i just cant stop thinking about it. I feel torn because im so happy to be done with treatment but im so scared at the same time. and people just dont get that. everyone thinks i should be embracing life and moving on ..... I wish they could understand but i dont think anyone can unless they have been thru it themselves.
I just finished my last round of consolidation chemo April 9th and my counts finally came back after a week in the hospital with infection and neutropenic fever. I am relishing the fact of no chemo and no neutropenic fevers for the month of May! Finally! I understand the difficulty of moving back into "normal" life, I do not think my life will ever be normal again, and with each strange feeling the worry of "is it relapse" re-occurs. Having an AML diagnosis and then going through treatment is an overwhelming experience, and it is hard not to worry. I am finally feeling stronger, so I am taking it one day at a time. How about "embracing life" in small increments. We have been through a devastating experience and it will take time to recover. Take care and you will be in my thoughts and prayers.
If that bruise is bothering you, call your doctor. Otherwise you're
just going to continue to be anxious, even though you may outwardly
accept your boyfriend's advice to ignore it.
I finished my last chemo session 5 weeks ago. Thankfully I haven't
had any symptoms since then. If I had a bruise of unknown origin,
or one that appeared to be much worse than the minor bump that
caused it, I'd be calling the doc. Knowing what I've been through
already with this illness, I'd rather err on the side of caution.
I'm not one of those who runs to a doctor all the time. I laid on a
couch with a fever for a week, insisting I only had the flu, when my
wife finally dragged me out to get medical attention. That's when I
found out I had leukemia.
If the bruise turned out to be nothing, I'd chalk it up as a learning
experience -- learning to be more comfortable with my illness, and
learning to judge when medical attention really is needed for a
bruise. Yes, it is hard to avoid thinking about relapse. Because we're
not in a situation where we'll always get "do-overs," we do need to
maintain a healthy balance between being aware of our health and
moving on in life.
I agree with Bob, go on in and get your CBC now so you can set your mind at ease. It's very difficult early on in the process not to be overly concerned about relapse, especially since the onset of AML can be pretty subtle. Living each day in turmoil takes its toll, so I think you're better off to push up the blood test so you know exactly where you stand. It may take quite a while for your blood counts to normalize, so you might be more susceptible to bruising because of lower than normal platelets...mine still hang out near the bottom of the range, some 3 years past treatment.
Keep us posted and be patient with yourself as you slowly recover from being pounded with chemo and having your world turned upside down. It's a process that certainly doesn't happen overnight.
Oh, man, bruises are the worst. Little things you never noticed before can now have you worried for your life. I really remember that so well.
The good news is it's probably just one of those bruises that you never noticed before, the little ones that come from bumping into a table corner. The less than good news is it could feasibly be something else and you're going to worry about it until you know what's up.
Just a tip, petichiae bruises are usually kind of bright purple as opposed to the normal black and blue bruise. That's not a constant so don't worry if it is purple, but you can pretty much relax if it's blackish.
To go with Bob and WBF, my policy is this, If you wonder if you should see the doc, you should see the doc. It's a simple rule and it applies. You never know what's going on and it's better to be told it's just the sniffles than to let it develop into pneumonia. Know what I mean?
You'll find a number of people don't get that it's not so easy to just shift gears and go into enjoying life. For the most part, they simply can't. They haven't been through it from the side you were on. We're here, we've been there and we know how it goes.
Did your doctor put you on any blood thinners, like injectables of Enoxaparin or pills? I take Enoxaparine for blood clots caused by Leukemia and I still get bruises, but they are self inflected.
One other thing, my doctor told me if I EVER get a fever of 100.4 or above go to the ER. In my case, 2 weeks after my last IV chemo, I bumped my forehead on a door frame and I got an infection. My temp was 100.6 so I went to the ER and they did a CBC and my WBC was almost 0 ( side effect of taking Idarubicin is low WBC). Long story short, I was back in the hospital for 5 days for a little cut on my head. My point I'm making, much like TEX's, is don't take too much for granted now, we are going through a VERY difficult time, If your body is trying to tell you something, do something.
I agree with everyone here, call your doctor, get a CBC to check on your WBC and Platelets.
I think that we all have these haunting fears of relapse. I completely echo with what Tex said about all of those little things that you didn't ever think about prior to treatment and now worry us all so much! Definitely call your doctor about the bruising. And give yourself some time to relax into maintenance stage. You won't stop being anxious overnight, but over time, it will get better.
well just an update... my first blood test came back completely NORMAL:) all that worrying for nothing i guess. non the less i have decided to see a healing therapist that specializes in seeing patients who have been diagnosed with cancer and have finished up treatment. I think this will help me to deal with the anxiety and fears i have. another peice of advice i took to heart today from my doc was " ashley you can not plan your life waiting for the other shoe to drop" in other words dont plan your life expecting your cancer to return... He told me this after i told him i didnt want to proceed with getting married until i was at least 3 years in remission, so i took what he said and decided to apply it and booked a much needed vacation for me and my fiance this comming january:)
Oh, I hope you can get away before January. I guess we all want the hell out of this Dodge.
I still think the best therapy is to let the time pass and the history of good checkups to pile up. It takes time, though. Hope the therapist is able to help you get to a safe place.
Hello, I was diagnosed with AML in Feb. 2011 and I am still getting chemotherapy. I always share that I take anti-anxiety medication to deal with my stress and worries about this disease. Not everyone needs it, but it really helps me and makes a difference in my ability to deal with day to day issues without the fear of the AML recurring taking over my life/thoughts. Just a random opinion, but I would have a joyous wedding as soon as possible, inviting my friends and family and having a great time if I was feeling well and healthy. I don't know your subtype of AML, but your worries about the AML recurring are not irrational and that is always a possibility, especially in the first few years after consolidation. My advice would be to enjoy your family and friends right now and plan a vacation before January.
Can you share with us the type of anti-anxiety medication you're taking? I've been having terrible stomach aches for the past four days. At this point I can't tell whether I'm developing ulcers from anxiety (I had ulcers three times in the 1990s), or whether it's a side effect from my Sorafenib or an after-effect of the chemo.
On the subject of chemo, how did it come about that you're still getting chemo 16 months after your diagnosis? My doctors gave me four inductions during the first four months and then called that my lifetime limit. I do hope you're doing well.
Hi Bob, I have been taking Xanax all through my treatment and it really lowers my anxiety. I have seen other blogs that mention some people prefer Atavan. There are many different brands of anti-anxiety medication, you can ask you doctor which one would be best for you. There are several subtypes of AML, mine is a 8;21 translocation. I achieved cellular remission (CR) after induction, but they can monitor the leukemia in my bone marrow and see that it is still there at a molecular level, but it is under control and staying low. They cannot monitor all AML types this way. Everyone seems to respond differently to treatment based on their subtype and other individual considerations. I don't know why I have been able to have so many chemotherapy treatments! I have been told that I may need a bone marrow transplant and they have found a nonrelative 10/10 match for me concurrently with my chemotherapy just in case. Things can change quickly with AML. If/when the chemotherapy does not succeed at completely eliminating the AML from my bone marrow, or if it shows signs of increasing in the bone marrow, my only other option is the transplant. Good luck with your treatment and the anti-anxiety medicine may be worth a try for you.
(By the way, I got the AML from my chemotherapy and radiation I received from breast cancer treatment as a side effect. It is considered a "secondary" AML, not good, I am told. But we all MUST remain hopeful!)
You might also find some help from Ativan. It's kind of the relaxing version of aspirin in that it has a lot of applications. It can be used for minor chemo-related nausea, as an anti-anxiety med and I can't remember the other things they gave it to me for but there were more than that. I think. Hell, I forget a lot.
Anyway, you might find that Ativan can relieve some of the stress and take care of some other things. But Xanax is the bomb and it's the one I used following my hospital stay. Just a thing to think about.
I just want to echo the other posters points. First, I was diagnosed in October 2010 and had four treatments over the course of 7 months (lots of infections/hospital stays). I am 21 months out from my diagnosis and 15 months out from my last treatment, which ended in March last year. I suffered from a lot of anxiety all last summer leading into the fall which got really bad on my 1 year anniversary of my diagnosis. I had panic attacks, one in particular that was kind of scary. I took Xanax, and still have a prescription that I use occasionally. I also sought out a therapist, which really helped me. Because of the quick diagnosis and immediate hospitalization, I had a lot of PTSD symptoms and it took a while for me to conquer them. I also am married with two young daughters, so I think as a mother, I was really struggling.
Really, therapy combined with medication was key in my ability to manage and control the anxiety of relapse. The other was my access to my oncologist and lab work. My doctor is extremely open to me coming in for labwork and/or an office visit if I feel ANY concerns. So far, none of my worries have amounted to anything. My bloodwork is normal and all counts are good. However, I do get bruises that worry the heck out of me. I had a fever in February that made me crazy. Some days I just don't feel "right" or I feel really tired . . . all completely NORMAL things, but when you have battled this disease, it's very hard to discern what is normal any more. I've also relied on prayer & meditation, plus healthy walks. I am so much better today that I was 9 months ago. I actually have days when I don't even think about it.
The best advice I can give you is to LIVE LIFE! You fought very hard to still be here and you have family and friends who love you so much. When you were sick and in treatment (I believe you said at least 4 months of that), I'm sure there were tons of things that you wanted to do but couldn't. So, go do those things! The anxiety will slowly fade . . . I didn't believe it, but it has for me over time. But right now, you do not have leukemia, so go live! None of us ever knows what will happen in life. As a survivor of leukemia, you know just how precious your time is. I have come to see this horrible thing as actually a kind of gift. It has allowed me to focus on making my life about things that make me happy and entrenching myself in joyful moments. How many people out there actually "get" this? I have probably more fully lived in the last year of my life since treatment than ever before (despite the anxiety). And if this blasted thing does come back, I am more than ever ready to fight it again. And, I'll be thankful for every single moment I've had in between.
Great post! I'll add my Onc puts all leuks on zoloft during treatment and afterwards if needed. Think I took it for couple of months after treatment. It definitely gets easier with time and clean reports! I just passed my TWO YEARS and still CLEAN----dx 5-2010---and am now on 4 month checkups.