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Discussion:
Husband Diagnosed May 2011
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Hi, MY 31 year old husband was diagnosed this month with CML. We have a 6 month old son and a 20 month old daughter. My husband was the strongest most postive person I have ever met in my life. When he was first diagnosed he seemed so super storng and felt as if he was oging to beat this thing. It has been about 3 weeks and I feel like he is getting veyr bitter and angry constantly saying he hates his life and has the worst luck. My heart is breaking seeing him like this and I never know if I shoul push him to do things or leave him alone. Yesterday I forced him to go to a memorial day bbq rather than sleeping on the couch all day and he blamed me for not feeling good at night. Said he hates seeing eveyrone else healthy and playing sports where he feels like he cant do anything. The heat seems to bother him a lot and he gets light headed often. He is in Tasigna whish is the sister drug for GLEEVIC... The new generation and suppose to have less side effects. I guess I was hopeing that maybe some people with CML can help me understnad how to deal with my husbands terrible mood swings and what seems to be changing whom he is. Should i puss him to go do noraml everyday things or is it better to leave him to decide. I feel like in the last month my perfect life has been taken from our family. I feel lonely, scared, and most of all HELPLESS!
Posted on 05/30/11, 10:33 am
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Reply #1 - 05/30/11  12:47pm
" Hello. I am 23 and was diagnosed at 18. I was on Gleevec and relapsed on it. I am now also on Tasigna. The side effects are a lot less. Im truly so sorry for you and your family have to go through. I cant even imagine having children and having to deal with this. I still am not in remission,. My best advice would be to push him but not always. dont let him get sad and depressed and angry and just leave him alone. Or he will just always be like that. The first two years I was soo upset, depressed and in denial. It took a lot of people pushing me and stuff before I finally gave in. I am here if you need to talk or need any advice!! "
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Reply #2 - 05/31/11  8:30am
" Dear Katie,

I am so sorry to hear of your husband's diagnosis. I was diagnosed in 11/10 and take Gleevec. I am a single mom with an 8 year old son and still work full time. The first few months were the hardest for me. Each of us responds differently to the disease, drug and the emotional response to our new reality.

It really helped me to hear from people with CML on this site and on community.lls.org (cml discussion board) who have successfully managed thisdisease for long preriods of time -- 12 years in some instances. The May issue of Smithsonian magazine about CML also offered me great hope.

Many people have found counseling and antidepressants/antianxiety drugs to be helpful. For me, information was therapeutic. The love and understanding of my family and friends was essential.

Hang in there and know that there are a lot of folks on this same journey who are here for you and your husband.

Best,
Nat "
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Reply #3 - 05/31/11  10:45am
" What will help you in this situation is to understand that your husband (and you) are going through a severe emotional trauma. Many people don't see it that way because they are focused on the cancer diagnosis and the emotional trauma takes a back seat. For some people just recognizing that makes a big difference, others may need some help. There are organizations like Leukemia & Lymphoma Society that have peer outreach programs or you can seek some professional help with a counselor.

Now I'm not suggesting you or he run right out and do this. At this point in time he is responding appropriately for someone who was just diagnosed. The issue will be if he can't climb out of it and if he continues to sink into his despair more deeply over time, that is when help would be needed.

I was 37 when I was diagnosed a year ago. I have two boys 5 and 7. My heart was broken when I found out about my CML and the thought of not seeing them grow up. I have gotten past that. I believe I will see them grow up. As a doctor told me when I was first diagnosed I fully expect to die with CML, but not from it. There was a study recently done that showed people with CML who respond well to treatment can expect to live a normal life span. There is even a good chance we will see a cure for CML in our lifetime.

A big part of dealing with CML is learning about it and learning about the treatments so you feel some sense of control over it and don't feel like you are helpless. CML is a particularly simple cancer. It can be life threatening if untreated, but it is basically pretty simple. In the chronic phase of the disease there is generally one mutation that causes the white blood cells to grow out of control. We have very effective treatments today that will keep the disease under control for most people. If one drug doesn't work well, there are others to try.

I don't like when people say we have the good cancer, or we are lucky to have gotten CML, but the point shouldn't be lost on us either. We are very fortunate to have gotten CML this day in age, 15 years ago, things would not have looked too good.

You can tell your husband that over time he will likely feel better. The deep fatigue is usually worst early on. Once his doctor gives him the ok, he should exercise. It may be a little harder to get started because of the fatigue or maybe tight muscles, but once he gets going he will feel better. I exercise most days. Since diagnosis I have completed two exercise programs P90X and Insanity. Look them up, they are not easy.

Since diagnosis I have gone on to do many of the things I used to do. Sometimes I feel wiped out and I have learned that I just have to pace myself a little better and rest when needed, but also push through when I have to. There is a difference between fatigue and exhaustion, he should try to push through fatigue. This past weekend I was away with my family. We took my kids to a farm for the day, we went swimming, played Frisbee and kickball. I enjoyed every minute of it. In a couple of weeks I am taking my son camping with the boy scouts, then I will be traveling out of town for a week to CA on a business trip, then a couple of weeks later I am taking the family on week long vacation to an amusement park/water park. My point is that life is moving on and I am still doing the things I was doing before. CML is a challenge in my life, but it is not a game stopper. I'm determined to not let it take away the joy in my life.

I understand how your husband feels completely. I felt the same way. Just know that in time things will likely improve and they will not seem so bad. Taking the pill will become routine and the side effects should let up as the body learns to cope with it. Also note I am on Gleevec, which generally has tougher side effects. I have considered switching to Tasigna but I am responding well and don't want to rock the boat.

I suggest you and/or your husband check out this forum http://community.lls.org/community/...
There are a lot of people there in all walks of life living with CML day in and day out. Some are new some have been around for a while. Some are doing great some are doing ok. We even had a guy on there recently who ran a marathon and another guy who did an Ironman Triathlon.

This disease doesn't have to ruin your family's life. It is an unexpected, unwelcome guest, but you can learn to live with it and life can go on and there can be many wonderful things in life, even for someone living with CML. You can tell your husband that I said there are two things he should continue to do, 1) Keep contributing to his 401K, he's going to need it when he retires someday. 2) Keep looking for the perfect song to dance with his daughter at her wedding.

I wish you all the best. If your husband ever needs someone to talk to, I would happy to speak with him. Feel free to contact me directly at callmelucky@att.net. I don't check that email everyday so if he sends me something, give me a few days to respond.

All the best. "
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Reply #4 - 05/31/11  12:21pm
" ^^^
A wonderful post. Hugs to all.

:) "
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Reply #5 - 06/01/11  1:06am
" I am really sorry to hear about your husband's diagnosis. I can completely understand what your husband is going through. I was diagnosed March 1, 2011. I am 33 years old. I worked out regularly. I didn't smoke. I haven't had a soda or any other carbonated drink in over 5 years. I only drank socially and that was rare. I worked as an EMT for 8 years and have been state certified as a firefighter here in Texas. I was diagnosed after a motorcycle accident. Prior to my accident and diagnosis, while working out, I would bench press 325lbs starting at 265lbs. I mention this because I felt invincible. I felt like Superman. I had a really strong immune system and was rarely sick. I could not believe it when I was given the news. I was angry, still am. I have my moments when I dont want to be bothered. I have three children. Two daughters (8 & 6) and a son that is 2. CML has opened my eyes to life. Everyone knows that they will have to die one day. No one knows when that day will be. We take for granted that we will grow old. I took for granted that I would see my children graduate high school then college. I took for granted that I would be able to see my grandchildren. This may sound really negative but for me, right now its a reality for me (I'm working on it)...My reality is this, we all will die of something. CML has just told me that I WONT die of old age. That scares the sh!t out of me. 3 years ago I decided to go to college and get my degree. I am now a senior majoring in Psychology. I might have a different understanding of your husbands emotions as well as my own than some others on this site. I am working on turning my diagnosis into something more positive. When I finish school, I plan on going back to get my Masters and want to counsel people. My primary focus will be people with cancers. Doctors are no help with the emotional part of this. Family is great but if your husband is anything like me, he doesnt want everyone feeling sorry for him. This site has been the best help for me so far. I want something a little more personal though. We are all just faceless screen names on here. I do well with face to face interactions. I would love something like "AA" meetings for us. I am here for advise if you need it. I'm new to this so my knowledge is extremely limited. I'm going to let my wife talk to you now and give you some pointers on what she did to help me so far...........hello, i know what u feel like and even now he still has those days our son is 2 1/2 and fears he wont get to play baseball, basketball, etc, he fears he wont get to to see his daughters (6 & 8) graduate from high school. We just found out in March, it has been a struggle but PRAYER has been the best source of comfort, Im not sure your religious preference but God has to be a constant in your lives, Pray for strength for you so that u can be strong for him, Tell your husband not to be upset and angry but remind him that if the cancer had not been discovered that he might not be alive today, remind him that he has two beautiful children and a wife by his side everyday that he is able to see and enjoy. Let him know that you cannot not physically relate to how he feels but you can assist him mentally and physically. The medicine will make him sick try organic fruits, vegetables, smoothies, ensure anything that will reduce the side effects. He will seem angry at first and could very well cry and be emotional. Let him. He will come around, remember his life as changed dramatically he went from being a provider, active and healthy to being sick and the complete opposite of everything he once was. It is hard for a man to accept these things. you are not alone I have only been doing this for a couple of months but each day it gets a little bit easier. Some days are harder than others. Also once he accepts that he is sick as his doctor to offer him antidepressants, my husband does not take them because of the side affects but he did at least try them. Also talk with him about joining support groups such as this one or even one in person with men with cancer or women, men would probably be better suited because they are wired differently than we are. Also let him know the research behind the drug and that eventually the side effects will subside. Some resentment will be present but with TIME and PRAYER it will slack off. It has only been a month give him time be patient and understanding and help him realize that each day that GOD grants is a blessing. Feel free to ask any questions and bring your husband in the circle as well but make sure to shower him with love and lots of kisses from the kiddos, do not show pity whatever you do that will only make the situation worse. Empathy yes but no pity he will feel helpless and u still want to make sure in some way that he is still the man and is needed. Keep encouraging him to be active but the things he used to do go easy you don't won't him to feel defeated because he cannot perform as he used to, gradually build up to those things, keep it simple in the beginning. "
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Reply #6 - 06/01/11  9:45am
" http://www.medpagetoday.com/Hematol...

Imatinib Normalizes Life Expectancy in CML
By Michael Smith, North American Correspondent, MedPage Today
Published: March 25, 2011
Reviewed by Robert Jasmer, MD; Associate Clinical Professor of Medicine, University of California, San Francisco and
Dorothy Caputo, MA, RN, BC-ADM, CDE, Nurse Planner


* Explain that patients with chronic myeloid leukemia who respond to initial treatment with imatinib (Gleevec) now have a normal life expectancy.


* Note that the most frequent adverse events with the drug were muscle cramps, asthenia, edema, skin fragility, diarrhea, and tendon or ligament lesions.

Patients with chronic myeloid leukemia who respond to initial treatment with imatinib (Gleevec) now have a normal life expectancy, researchers reported.

In a study of the long-term effects of the drug, survival of patients with a complete cytogenetic remission was not significantly different from the general population, according to Carlo Gambacorti-Passerini, MD, of the University of Milano Bicocca in Monza, Italy, and colleagues.

The finding is an "indication of how profoundly imatinib has changed the clinical course" of the disease, Gambacorti-Passerini and colleagues argued online in the Journal of the National Cancer Institute.

Indeed, the advent of imatinib and similar agents "create a platform from which we can entertain the possibility of curing" the disease without a stem cell transplant, argued B. Douglas Smith, MD, of the Sidney Kimmel Comprehensive Cancer Center in Baltimore.

"It is now time for clinical and laboratory investigators to build on this platform and work to turn good and great responses into cures," Smith argued in an accompanying editorial.

Imatinib, a tyrosine kinase inhibitor that targets the so-called Philadelphia chromosome characteristic of chronic myeloid leukemia, was the first to yield complete and lasting responses and is now widely used as first-line treatment, the researchers noted.

But most information on the long-term effects of the drug has come from industry-sponsored trials at selected centers, they added.

To help fill the gap, the independent Imatinib Long-Term (Side) Effects study -- conducted in 27 centers on five continents -- enrolled 832 patients who started treatment with the drug before 2005 and were in complete cytogenetic remission after two years of therapy, Gambacorti-Passerini and colleagues reported.

The analysis looked at data on toxic events (related and unrelated to the leukemia), loss of complete cytogenetic remission, and cumulative incidence of death over a total of 3,247 person-years of follow-up.

Over the follow-up period -- a median of 3.8 years -- the researchers found 20 deaths in the study population, for a mortality rate of 4.8%. The standardized incidence ratio was 0.70 with a 95% confidence interval from 0.40 to 1.10 -- not significantly different from expected deaths in the general population, the researchers said.

Of those 20 deaths, only six were related to progression of the leukemia, and only four resulted from a second cancer, they reported.

"Patients in this population are more likely to die of causes unrelated" to chronic myeloid leukemia, Gambacorti-Passerini and colleagues argued.

The researchers also reported:

* 139 serious adverse events -- mostly gastrointestinal toxicity and cardiovascular events -- of which 19.4% were related to the drug.
* 830 nonserious adverse events in 53% of patients, of which 560 were deemed to be related to the drug.
* The most frequent adverse events were muscle cramps, asthenia, edema, skin fragility, diarrhea, and tendon or ligament lesions.
* Only 19 patients (or 2.3%) stopped imatinib owing to drug-related toxicity, but at least half switched to second-generation tyrosine kinase inhibitors.
* 45 patients lost complete cytogenetic remission, at a rate of 1.4 per 100 person-years.

The researchers cautioned that the study was not designed as an experimental protocol, so the management of patients was left to each participating center.

On the other hand, they noted, it was independent of industry, which is usually effective at monitoring adverse events during clinical trials, but is "notoriously inefficient" at doing so outside of trials. "
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Reply #7 - 06/01/11  10:15am
" I want to start by saying THANK YOU to you all. TKIGUY, your first post brought tears to my eyes and they were joyous one which hasnt happen for me in the past month. To read how you continue to live a normal life enjoying your boys and wife makes me have hope for my husband and our family. From your post you remind me a lot of my husband Dave. He too is a business man and a very successful one and truly took pride in providing for and being there for our entire family both extended and immediate. After he was diagnosed I guess my biggest fear was that it would change whom he is and I turly married one of those SPECIAL people you meet in life. He always found the postive in life and others he always wanted to do for others and was the strongest guy I have ever met. This past weekend just seemed like he was losing that feeling sorry and depressed and most of all negative and angry. He has never cried through this whole thing and it scares me because I so feel his pain. As i said in my first post it just seemed to us that our dreams have been taken from us. Dreams of watching our chicldren grow up, dreasm of retiring on the beach together, dreams of just growing old. Along with my new baby boy and my 1 1/2 year old daughter we were closing on a new house as of june 1st which was truly our dream home. My husband has worked 75 hours a week and traveling to save for this house and after his diagnose we had to cancel the deal. I too was dissapointed but i can tell it hit him way harder. After reading your post it truly made me look at what is happening to us in a different light, I want to live each day to the fullest as YOU have been doing and I hope the same wish for my husband I told him I wanted him to speak to you and he said it sounded like a good idea. I will give him your email or maybe ill email you his and oyu could tell him about your story if you have the time and let him hear how very normal your life has been espcially with your two boys. In Dave fashion he has already partnered with his Doctor to start a charity where is business as well as me and him together will start raising money for CML. I try to keep it all positive and explain to him that we all have a purpose here and we have to listen to that inner voice and go with it... I def want him to come on here because you all have made a tremendous difference in my mood the last few days. I actually smiled yesterday and spent sometime laughing with my kids rather than searching the internet for statistics. I just have moments where I truly feel helpless my husband was truly any womans dream he provided for us, he is handsome, he is kind, sincere, sentive, a hard worker, and most of all treated me like a princess. I just feel like I want so bad to help him and making him pancakes or his favorite dinner is just not enough. I asked him what I could do and he said nothing. I just want to be healthy, I felt so helpless and so sad I didnt know what it do. Its so hard so see someone whom has always been so strong feel se weak. I truly want to thank you TMIGUY because you made me focus on the time we as a family have today I want to stop wasting time stressing about this disease and about our future and focus on the postive smiling two faces that we both get to see each day. CML might have screwed with his bone marrow but its my job not to let it screw with his life, his making memoires, his personailty, and most importantly his dreams. Like you said, lets continue their retirement fund because i will be SURE we will need. it! Thank so much for what you have made me feel yesterday and as well as today. Hopefully my husband will talk to others like you and start to have these feelings too. I just hope together we can take each battle and each struggle ahead with half as positive an attitude you all have. "
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Reply #8 - 07/02/11  5:12pm
" I am 49 years old and was Diagnosed with CML on Thanksgiving in 2010. I understand how your husband feels. It will take awhile for it to sink in that he has cml. I still am not sure I have accepted it. I am luck that I am still working and only missed 3 days of work due to being in the hospital after the initial diagnosis. He can talk to his family doctor about antidepressents. Mine put me on wellbutin without even having to ask. Also he recently started me on a drug called Nuvigil for the fatigue caused by Gleevec. It has helped alot. I also have a wonderful family and somedays I am overwelmed by the fact that I may not be around for them. It is something that the whole family has to accept. Hopefully the medicine will keep him in remission and he will lead a normal life. That's what I tell myself everyday and I also thank God every night for giving me the previous day. Be strong for your husband and he will get better. "

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