Hello. I am a mother of 10 month baby boy. its been a week found out my husbanand has ccl, stage 2. He is an amazing family man and I can not accept this reality. please share your stories. how long can survive without treatment. working overseas for many years is no longer possible? we are in Japan.
MY 36 yrs husband is on stage2.: Hello. I am a... - CLL Support
MY 36 yrs husband is on stage2.
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Kenmom
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Dear Kenmom. Really sorry to read your news. There are different kinds of CLL, so if you can share more of your test results if you have them, there are some very knowledgable and very kind people on this site who can hopefully give you very good answers. Just try to "keep calm" at the moment. If you can also tell us your husbands age and occupation that might help with some of the answers. I am still working six years after diagnosis and treatment ending last year.
Best wishes,
Ernest.
Dear Ernest. Thank you for your comments. I hope your treatment ended well. Six years is long but we all want to live way longer than that. "many years without treatment" is not so grateful to me. I want like 40 years or longer. Am I too greedy?
O.K I will share and open his test results when I get them. By the way he is in his 36, and working for a company. Bone marrow test result will be known by Nov. 15th.
Best wishes,
Kenmon
Dear Kenmom. Sorry for slow reply, I had a power cut at the weekend at home. All ok now. After FCR treatment things have turned out well for me. My recovery was slow in my case, but the thing you learn is we are all different and respond differently to treatment, and mine was not a typical case. If you click on peoples pictures you can get a list of their posts.
Best wishes,
Ernest
Hello and welcome to this site. You are new to CLL and it is a distressing time. When you catch your breath do a lot of reading. There are lots of good links on and thru this site. No one here can tell you what and how your husband's disease is going to progress or not . CLL is not the same for any one of us. Read a lot and ask questions and those here who are strong on the knowledge end of things will answer questions or direct you to information. There are no absolutes for you at this point I would think. You have to have frank discussions with your cancer specialist but I would read first so you know what to ask. Good luck and check back in as needed. Other group members will no doubt comment in the hours and days ahead.
Hello Kenmon, you must try to be realistic, although it is hard to swallow sometimes.
Everbody can get a desease, regardless his age or profession.
Please go and see a CLL specialists and first take it easy. There are so many treatments out there and so many new drugs in the pipeline, that a many world known specialists explain, that in most cases the CLL can be treated succesfully, and even cure is near.
My Prof told me three years ago, that most of the actual patients will have a normal life with the CLL been treated.
Dont worty to much. Many participants here habe a 20 years long experience.
All the best to you.
Seoul
Hello there
Thank you for your warm comments. It is amazing some patients here have 20 years long experience. I wish my husband will fight longer than 20 years so that we can see our little boy will be an adult and get married someday. It is too crucial to live, watch and wait.
Hi Kenmom,
Your husband is relatively young for a CLL diagnosis, with the median age of diagnosis around 72. In the context of that median age at diagnosis, 20 years survival is good! (In other words, near normal life expectancy 
) The age distribution of our membership is naturally less than that due to our community being web based and we do have members diagnosed younger than your husband. I was nearly 54 when diagnosed at stage 4; that's nearly 7 years ago and I'm still in watch and wait. My specialist told me 'You are young, we can do something for you'. Nearing my mid 50's that seemed a strange (but welcome comment) to me, but understandable in the context of the median age of diagnosis being 18 years older than mine.
So your husband has even more youth on his side and that really is important in being able to get through the challenges of treatment if needed. Do not get mislead by the statistics you'll find when searching for life expectancy with CLL. The easily found statistics are well out of date and more recent statistics have shown several years increase in life expectancy before the impact of newer, safer, more effective treatments. Remember that in order to determine if a new treatment gives a survival time of 20 years, sufficient patients given that treatment for a valid statistical analysis have to first live 20 years after treatment, the data collected, analysed and published.
There is much your husband can do to improve his life expectancy with CLL. It is important to always remember that CLL is a cancer of the immune system and between 20 and 50% of us don't die from CLL, but from an infection. Hence just taking additional care to avoid infections can extend our lives and the quality of our lives considerably. Have a read of this pinned post: healthunlocked.com/cllsuppo... (Other commonly asked and answered questions are found in this section of the forum, which is to your right on a desktop/laptop screen, or down the bottom of the screen on a tablet/laptop.)
Neil
Hello, AussieNeil. I can see you are an Administrator here. Thank you for those helpful information. I just read the web page you let me know, and write down some useful tips to do.
Yes, I sometimes doubt about survival data whether it has sufficient patients and based on long term test. So I try not to be so pessimistic.
It is good to know that CLL is a cancer of the immune system and between 20 and 50% of us don't die from CLL. I must let my husband know the fact since he is lazy to wash his hands.
Thank you so much again. Now I have to feed my little boy. Keep in touch, AusseNeil.
-Kenmom-
You may well save your husband's life if you can encourage him to wash his hands before eating or before touching his eyes, lips or nostrils. With CLL, our immunity gradually worsens over time (and during and after treatment), so illnesses can become more frequent, more severe and take longer to get over. Hence it is best not to get them in the first place. Viruses - for which antibiotics don't work and hence we are reliant on our increasingly struggling immune systems to cure us, can remain viable on surfaces like light switches, door handles, rails and so on for up to several days after contamination, depending on the surface and air humidity.
Ask your husband to read this: healthunlocked.com/cllsuppo...
and encourage him to improve his hand washing hygiene so he will be there to see his son grow to be and independent adult and hopefully hold his son's own 10 month child in his arms.
Neil
Hi kenmom. Shit! Sorry but that's what I think. I am male and was diagnosed aged 38 nine and a half years ago. Our three kids were aged five to ten at the time. Your husband is stage two. So the doctor needs to advise you. The first thing I did on diagnosis is check my insurance policies. Critical illness insurance should pay out in full. Income protection can mean a long time off work. I needed treatment early but some people watch and wait for many years. You have a lot to consider. I recommend counselling. Some treatments now are brilliant and getting better. Hang in there.
Oh my god! Hello Corin850
Thank you for sharing your story. I was waiting for the comments like you. I assume that you have a hard time when you figured out. I am sure your wife worried future life. I agree checking insurance policy is crucial. Unfortunately we have no insurance for Cancer. So my husband has to work until his health condition is allowed. That makes me so sad. I quit my work when we came to Japan from Korea. My situation is a little complicated. I will find a possible counselling chance here. Thank you. Hang in there.
Hello, I know what you both are going through, I was diagnosed just about a year ago. The first few weeks were very emotional for my wife and I. Even though we don't like what happened, we have come to realize that the best thing to do is don't panic, be calm, educate yourself, consult. Take things one day at a time. The medical help in Japan must be good, I would think. I am also working overseas, but in Eastern Europe. I'm in watch and wait, the medical level here is not near what it is at home, but on the other hand, I have a pretty good hematologist. You probably will want to make changes in the way you do certain things. Since my diagnosis I have made many changes, habits, hygiene, thinking, diet. Much is personal decision of course since no specialist knows exactly what is happening and what will happen, and there seems to be a lot of conflicting advice to find. Personally, I find reading stories of long time CLL patients who have gone decades living productive lives, to be very helpful to keep my emotions positive, like the ones here: livingwithcll.info/index.ph.... My wife, even though she has emotional ups and downs dealing with the thoughts of what could happen, is a tremendous support. Most of the time she is positive and encourages me to keep up my regimen, and it really helps.
Hello JustAGuy!
So you are working overseas having CLL. I am glad to hear that.
Normally medical level in Japan is high but CLL wise it is the lowest survival among cancers. Specialists do not know the reasons. Ont thing is young Asian hardly have this diseases. I would like to find and talk with people who are in the similar condition of my husband. Yet I found none.
Thank you very much let me know the website about long time CLL patients. This definitely would be helpful to me get over this hard time. Since 3 days ago, my husband has been working overseas. I am worrying everyday and night if something happens to him during the trip. I have to check the website right now.
Thanks. Keep in touch in East Europe
We do have some members from Japan and you are correct in stating that finding CLL expertise is difficult there, due to the considerably lower incidence of CLL in Asian countries. Cllcanada may be able to help you with some suggestions of centres where there's an acceptable level of expertise and I suspect you'll find AmericanRonin 's posts of interest. You might get responses from some of our Asian membership if you separately post on the topic 'Seeking CLL expertise in Japan'.
Failing any helpful leads there, I'd recommend your husband find a haematologist specialising in blood cancers and acquainting yourself with the latest research papers (links are regularly published here). That way you can accompany your husband to his specialist visits and ensure his specialist is at least being encouraged to keep abreast of new research. Even elsewhere in the world, CLL is considered an 'orphan disease', that is, it's rare enough to require government incentives for drug research and development. Further, research by the well respected Mayo Clinic in the USA has shown that seeing a CLL specialist results in several extra years of survival time with CLL. With the fast development of new drugs currently, that extra survival time can translate into many years of additional survival, because new drugs can become available in those 'last' few years. There have been quite a few very impressive patient survival stories with the newer drugs. Basically, CLL is still considered incurable; it (nearly) always comes back after treatment. That means that when we finally need treatment (and incidentally about a third of us never do), our remission time becomes shorter with the inevitable repeated treatments then treatment with different drugs when we no longer respond - until we run out of available treatment options. Ibrutinib, Venetoclax and CAR-T treatments to mention just a few new treatment protocols, have all successfully given patients that have run out of non clinical trial options very good responses.
Neil
I think Neil's advice to together to doctor visits is good. Sometimes my wife has questions I didn't think of. Sometimes she remembers something the doctor said better. And moral support, we all need that!
Thank you for giving me suggestions; Cll Canada, AmericanRobbin's post, and the way I post title with Seeking CLL expertise in Japan.
I have never thought about those without you, Neil.
I understood my husband will finally get treatment. And I know there will be only few option left. I have a question. Available drugs are different from countries? If so, why is it? We only see one doctor so far, and next month after getting know the bone marrow result, we are going to get a second opinion. What shall I ask to doctor by the time? I might ask him disadvantages by postpone treatment.
Because your husband was diagnosed at a relatively young age, he is likely to live longer than someone diagnosed at a more typical age for diagnosis and thus need treatment eventually.
I'll answer the rest of your question, but please note that you are unlikely to need to know this for several years at least. The important thing right now is to do what you've already arranged - getting a second opinion.
Most countries, particularly those that offer a universal healthcare system, where the government subsidises patient care and treatment, have a process to assess whether new drugs should be approved for use (and subsidised by the government/health insurance companies). If a country doesn't have such a system and drugs are allowed to be purchased from overseas, then you face the problem of finding a specialist familiar with handling what can be dangerous side effects.
With the drugs with which we have 10 or more years of statistics, (with the possible exception of FCR treatment for those with the right CLL genetic markers), trials showed no difference in life expectancy with early treatment. (Basically the side effects from treatment put the patient at increased risk of death and this, as well as the impact of treatment on the immune system, cancels out any benefit from earlier treatment, plus CLL pretty well always returns after remission. That's why patients are asked to 'Watch and Wait' and defer treatment until needed. It is important not to put off treatment too long however if it is needed, because the patient needs to have sufficiently good enough health and bone marrow function to survive treatment.
As to what to ask the doctor you are seeing for a second opinion: 1) You should get confirmation your husband does indeed have CLL (there are very occasionally similar blood cancers that can be misdiagnosed as CLL, or even more rarely a second blood condition). A Flow cytometry blood test is used to diagnose CLL, but rarely getting a clear result isn't easy).
2) You should verify what stage your husband has
3) It can be useful (but not essential at this stage), to determine what genetic damage has caused your husband's CLL. A FISH (blood) test provides this, but as it can change over time and can influence treatment choice, it's best to leave it until treatment is required.
There may be some other questions that come to light after your husband gets his results in a month's time, but meanwhile you should also expect answers to 1 and 2 from his diagnosing specialist.
Neil
Here is a short list of institutions involved in CLL research in the Japanese population... it is a starting point in your quest for a knowledgeable doctor...
1 Department of Medicine and Clinical Sciences, Gunma University Graduate School of Medicine, 3-39-22 Showa-machi, Maebashi, Gunma, 371-8511, Japan.
2 Oncology Center, Gunma University Hospital, Maebashi, Japan.
3 Department of Medicine and Clinical Sciences, Gunma University Graduate School of Medicine, 3-39-22 Showa-machi, Maebashi, Gunma, 371-8511, Japan.
4 Fujioka General Hospital, Fujioka, Japan.
5 Department of Blood Transfusion Service, Gunma University Hospital, Maebashi, Japan.
6 Department of Laboratory Sciences, Gunma University Graduate School of Health Science, Maebashi, Japan.
7 Maebashi Red Cross Hospital, Maebashi, Japan.
8 National Hospital Organization, Nishigunma National Hospital, Shibukawa, Japan.
9 Saiseikai Maebashi Hospital, Maebashi, Japan.
10 Usui Hospital, Annaka, Japan.
~chris
Thank you so much for the list. I did not know there are CLL specialized hospitals and labs in Gunma. To my surprise most of them are in Gunma not in Tokyo. I am glad and happy to find some hope here. Thank you.
I do not know why but my question was gone. I wrote it yesterday. So I again ask you here now. Could you explain why you recommend hospitals above? Because there are lots of other hospitals in Tokyo and other areas. All you said are located in Gunma. It is because they are so so so good at treating CLL? I hope that is true. I need to know more information but unfortunately I could not find enough reasons to choose one of the hospitals in Gunma. Choosing best doctor seems quite critical to deal with CLL. Please help us.
It was around midnight in Canada when you replied, so Chris should get back to you later today. (You can specifically notify someone by typing @ in front of their name like this Cllcanada and you get a pick list to chose from )
Hi
These hospitals have done or are doing research in CLL based on papers published on PubMed a US database for medical research papers...
If an institution is doing research, it means there is a doctor there interested in CLL, ....you need to start making inquires.
CLL is a rare cancer, and it is very rare in the Asian population, so CLL specialists are scarce.
These hospitals are a starting point... you will need to cast a wide net and start asking for recommended doctors, from researchers you contact...
This follow the bread crumbs approach is not ideal, but it has worked well in other countries were CLL has a very limited presence...
Hope you search proves a success...
~chris
Hello Kenmom, did I understand that his work is overseas and you are not there? I have a long term job and my wife and I are both here. She is my biggest support, I thank God for here daily. As I said, after diagnosis, I made big changes. Not everyone bothers, since usually doctors do not say it is necessary. My wife is not on my diet, she still gets to drink wine and eat the desserts! But she does all of the shopping and preparation, and in fact, she does most of the research. Since we found several references to pesticide connection with CLL, we try to get organic, for foods which are prone to have lots of pesticides. She has researched which ones are the worst.
When I was diagnosed, the doctor said treatment will not be necessary yet, but we will "wait and watch". Without knowing more, we thought this couldn't be the best approach. But researching showed that this is the standard procedure. You may have already found that. Doctors monitor his symptoms, when they see enough changes or certain things, then they recommend treatments. After treatment, if it goes well, then he goes back to wait and watch. Some patients are on wait and watch for years before treatment is needed. It all depends on many factors.
My favorite patient stories are on livingwithcll.info.
Hey there. My husband is temperately overseas, and will come back (hopefully!) weeks later. He goes to business trip almost every two month, which I do not like to be alone. (with my baby now though) We probably would go out of Japan to work and have a life somewhere east Asia for 4-6 years if he was not diagnosed. That was an overall plan that we used have. Does your boss know that you are LCC'er? Is it possible to work for many years out there? Aren't you insecure when you need medical help? I really hope that my husband can live normal life. It might depend on the result next month.
Hi Kenmom, decisions are always hard to make when the unexpected arises. Is Korea an option for you? Do they have better CLL care? I have only informed a few people of CLL based on who I think need or deserve to know. All of them have agreed to keep confidentiality. My employer knows and is OK with it. I told my brother. And one trusted friend. It is hard at times, because sometimes I feel I would like the sympathy of others and they would understand certain things, my weird diet, for example. But on the other hand, people worry, and as I read in various places, they may start to treat you differently. So for me, at this time, I keep it private. Everyone is different. Don't make rash decisions. Discuss everything with your husband. As for my view of the treatment here, I feel that for wait and watch, the medical level where I am is adequate. Blood tests, ultrasounds, MRIs, medications, are all available and rather cheap. If I ever need treatment, I will go to another country where there are more treatment options. I sympathize with you both, the first weeks were very difficult, waiting for various tests, uncertainty, etc. Many CLLers though, after they realize that it's possible to go on for years, learn to appreciate life more than before. It sounds odd, but we realize that uncertainty exists for everyone. Everyone should enjoy the gift of life while we have it!
Hello Kenmom,
Welcome to our unfortunate site, but its a big family with lots of help.I was diagnosed young, stage 3, two years ago.My head was reeling but at my first meeting of CLL here in UK I met a man who has been living with this for 35 years! Be strong and don't panic like most of us( which is natural) I spent months,
reading,researching,talking.
Finally, I realised that life is passing me by with my sword od Democles. There are amazing new drugs to help us,also 20 years ago chances of living with this were almost non existent . Being young will help your husband to fight this.
I have decided to live and enjoy this life as it's the only one we have. Many more advances have been in the last 10 years and this is positive.
I wish you strengh and hope for you and your family .
Hi there. Sorry for my late reply. I live in different time here. So you are in stage 3. You must be more pessimistic than my husband. Are you in wait and watch now? I wish that you are happy and have healthy life for a long long time. Thank you for the hopeful message.
I was diagnosed at 39...been at watch & wait for 4 years, heading into treatment soon. You'll have a lot of people in this forum who will give you good insights and others who obviously had NOTHING in their lives until their CLL diagnosis. Depending on your husbands prognostic indicators, I would not project too much at this point and continue to live your lives.
Hello. Thank you for sharing your story. You are young too! What did you do for last 4 years? did you work much? hanging out much? I assume my husband will get treatment after 3-4 years to see other posts. I feel sorry to my husband he has to work knowing he has illness.
I hope your remission will last forever. I will share more info when I know indicators.
I started a new job (IT Project Manager) the day I was diagnosed! LOL! Been working, traveling for work, traveling for leisure ever since. I have been an athletic since I played high school, college football. I continue to do crossfit, weights and 10k runner. Never had as much as a flu prior to diagnosis...so no hypochondriac here. Only symptom I have are some enlarged lymph nodes at the moment. DR says I will march through FCR...but we'll see. Don't let the CLL ever define your husband! Ping me with any other questions.
I was 47 with a 16 year old when I was diagnosed and was mostly focused on what will happen to my son. At first I panicked, but now 10 months later, I am just doing everything I can to live a full life expectancy and that is what I intend to do. I have the "bad" version of CLL so I'm already in treatment, but at a world-class center. It's statistically likely your husband has a milder form and that he will be fine for many years. You just have to get it in your heads he will beat this. And make sure he washes his hands!
Hello there.
Thank you for the comments. So you have "bad" version of CLL? and already in treatment. I hope your treatment is so fit for you and going to reach long time remission. Best wishes!
Hi! I am 55 and was diagnosed with CLL. I too am stage 2 due to I have swollen lymph nodes. My WBC is 19.6 and they say I'm in the "watch & wait" stage, but that is hard to take. I went to MD Anderson in Houston and had more testing which I am glad I did. I have some good markings if and when I might need treatment. Don't believe a lot of what you read on the internet-stop reading those stories. Stay with groups like this who have been and are going through what you are. My best advice is keep on living. I too, had a hard time at first-I didn't think I would live to be able to enjoy retirement with my husband, I don't have grandchildren (yet), I want to live at least until I'm 80-something! Ha.
Love & Prayers,
Michelle
Dear Michelle
I can feel your warm heart. My husband has just same condition like you with swollen lymphnodes. Beacuse of that he was told stage 2. 55 is still very young. My parents are 63 but still I believe they live more than 20 years. I try not to believe all the things written on internet. I need to be positive and empower husband like other people say.Thank you again! keep in touch.
Has your husband been tested for the good/bad blood markers? Like q13? This is what MD Anderson in Houston did and found I had some very good markers. It gave me a lot of comfort to know I have a doctor/group in Houston and in Tulsa that will work together.
I was diagnosed at age 42. That was 3 years ago. Stage 2 at that time. Watch and wait still but will probably need treatment in the next couple years as my lymph nodes continue to swell.
Everybody is different but my CLL specialist said that statistically I am more likely to die of a car accident. That keeps things in perspective for me.
I own my own business so not working is not an option.
Try to live a healthy lifestyle and rest if needed.....I love my afternoon naps on the weekend.
Make sure you see a CLL specialist.....that is important.
I was 39 when I was diagnosed with SLL (essentially CLL but the malignant B cells hide in the lymph nodes and bone marrow). I was already stage 4 and needed treatment within 6 months and that was in 1995. I relapsed in 2007 and have been clear ever since so just coming up to 22 years. My son who was 18 months when I started is now 23 so don't panic in all likelihood your husband has many, many years of life to come.
Dear, Mr. TheFrog
Hi there. First of all Congrats on your long long remission. You really are an angel to give us hope. Despite of comeback you made it. If possiple could you briefly let me know how you cope with stage 4 and what treatment you took for the first place? I am so happy to read your story. Thank God!
(somehow I can not write this right after eperl's comment. so plz understand to write here)
Dear eperl,
Thank you for sharing your story. So you are now still in watch and wait for 3 years, I understood. I hope you do not need any treatment forever.
I see that finding CLL specialist is important. We are just informed about some specialists here. I am so relieved to know there is specialized facility here. This website is really helpful I appreciate all the good people like you.
Kenmon,
It's difficult to say how I coped with being stage 4 because this disease tends to arrive very slowly and you don't really notice. CT scans showed I had enlarged lymph glands all over my body but the only obvious ones were in my neck. I did have very bad night sweats where I'd wake up soaking wet but generally I didn't feel too bad and still worked as normal. My initial treatment was completely different from what is used today but at the time it was experimental and they hoped might be a cure. I had 6 cycles of Fludarabine (still used today) and then a stem cell transplant where I was my own donor, this involved very high intensity chemotherapy and this is only considered as a last chance type treatment today and always with someone else as the donor. This put me into complete remission for 11 years. In 2007 I relapsed and had 6 cycles of Fludarbine and Cyclophosphomide and that has given me another 9 year and at my last check in September my blood counts were perfect. Everyone's experience of this disease is different but on the positive side it should make your husband appreciate all the good times he has, everyone is going to die sometime but this diagnosis does come as a shock. Do not waste the time you have worrying about what might happen, enjoy what you have got and in reality your husband is likely to have many years of good health to come.
Jacques
Dear Jacques, (Frog guy )
Thank you so much for telling me your story. I can picture what comes next for us, and what I have to do is not wasting present time.
It seems you have been through hard times. I am amazed to hear you have got complete remission for 20 years in total. (By the way, are you living in the States? Medical skills seem to be really good over there.) Anyway that gave us big hope! I admire you that you are so positive and strong since such a young age. My husband is a positive person too, which is good thing.
One night, I saw my husband had very bad night sweats. At that time he wore too many clothes, so after took off some, he was no longer sweating on that night. However I understood we have to watch if it happens again.
My husband will come back home from business trip on this Friday (after 14 days!) . Almost every day we see each other on video chat. I will prepare some delicious meal for my family. I am happy to share your story with my husband. Thank you again and I want to hear more of you, and I will tell you what is happening here.
Kenmom
Hi Kenmom,
Welcome to our community. I wish you snd your husband well. Hopefully you have learnt good information from all the previous posts. The only things I can add are-
Try not to panic, it is a worrying time, however often you will wait for years to be treated. In my case it was only a month, but I realised that unknown to me I'd had some symptoms developing for years. I was on a secret watch and wait!
Be cautious of "Dr Google". There are many people out there that tell you lots of things that are not proven or just wrong. This community is one of the best.
Enjoy life. If your husband is home on Friday he is arriving in time for the Autumn colours. Such a wonderful time in Japan. Go an enjoy it.
Be aware that there are two ways of staging CLL (scales of measuring it). Rai and Binet, I guess Japan will use Rai like the USA does. Just be aware because the numbering is different with Rai have more stages than Binet so you could get confused and worried if you get the wrong one.
Finally, just ask, were are all here to help each other.
All the best to you and your family, rob
Kenmom,
I live in England and have been treated in Oxford where we have very good hospitals and several haematologists and quite a lot of research is done on CLL/SLL.
My father was French which is why I'm called Jacques but I've lived all my life in the UK.
I'm happy to answer you or your husbands questions.
Jacques
You are fortunate to have Dr. Anna Schuh in Oxford, renown CLL specialist and researcher...
Yes, Anna is my consultant but only took over from Tim Littlewood about 6 years ago and as I've been in remission since 2008 she hasn't had to treat me yet. It is nice to know that I'm in the hands of one of the leading CLL/SLL specialists but I hope treatment is still a long way off.
Dear Jacques
Thank for the reply again. You must be a very kind person. (Probably Top 10 kind person in my life.)
I have never been to Europe. But it is known English men are nice and gentle. I just found one proof.
I am Korean married to Japanese. It is our 5th year wedding anniversary next year. After knowing his illness, I want to prepare a wonderful event for us. I am thinking what does he like what does he hate. Sometimes I am regretful that I was too selfish. Many times I was not that nice to him.
Once my husband asked me that Health Unlocked belongs to which country. I still do not know exactly. I could see a lot of U.K people here. I saw some American too. Obviously I am Korean. So basically it is for the people all over the world, I guess.
You do not need to reply to this. When I know more I ask you some questions until that have a wonderful time and enjoy your life as now.
While Health Unlocked and the parent charity, CLL Support UK cllsupport.org.uk are based in the UK, 'CLLSA at HealthUnlocked brings together an international on-line community to allow sharing of experiences of living with CLL/SLL within a supportive group who do "get it", supported by reliable international information resources and perspectives.': healthunlocked.com/cllsuppo...
You and your husband are welcome to our international community, which is supported by knowledgeable and empathetic members, not just from the UK, but from around the world and jointly administered by admins in the UK and Australia.
Neil
Thank you Neil.
Oh I see. International on-line community for CLL/SLL is this web-site. I guess I found right one. I am very grateful. And my husband said he felt better to know about CLL, me too.
I am based in Tokyo. I was diagnosed with SLL/CLL over 5 years ago. I went through 6 months of FCR chemo twice, and now I have been taking the drug Imbruvica (which was recently approved in Japan). I have a busy job traveling around Asia 7 months a year every year, mostly in Beijing. CLL has not slowed me down. I still perform my job as usual. I hate to think about "survival" issues...so I don't. My son (half-Japanese) was 10-months old when I was diagnosed. I first thought I would be gone in 6 months. Now I feel I will live a full normal lifespan. The drug Imbruvica is very expensive, however. I have company medical insurance that covers most of it, but I don't if that will be the case in 10 or 15 years. Do you have Japan National Health Insurance? I do not know how much it covers Imbruvica (Ibrutinib). And I don't know if doctors in Japan can prescribe it without first prescribing FCR chemo.
Thank you for the long and helpful reply. In fact my husband diagnosed with CLL, I am sure he has Japan National Health Insurance. As I know, it could cover 30 % of the payment.
It is good to know the illness has not slowed down your work. We are now looking LL specialized hospital and doctor, so that we will get a second opinion.
The bone marrow test result will be known soon. We will see how bad or good the body condition is. I have heard many times, we must be active with CLL. By that mean, what should I ask to a doctor? What are critical facts (such as if CD38+, B-cell) influence to prognosis? Thank you for your kind help in advance.
My child is now only 11months. I am worry about my husband health condition.
The good news is, at least this is my understanding, there is nothing hereditary about the disease. I was worried about my son, but told not to worry. I am not the right person to ask about the critical factors, but other people on this site clearly are. The Imbruvica prescription I have now costs $100,000/year. I get it in the USA. I do not know the Japan price. Thankfully, I have good company insurance (US company) and pay just an extra $100/month for the drug. (Three pills I take each morning and currently have no side effects.) I do know this: FCR chemo in Japan was about 7x cheaper than it was in the USA.
Wow. Good to know FCR Chemo is so much cheaper here in Japan. You are such a brave person to work overseas with CLL while you are getting pills in the U.S. Wow.. I am amazed. Good Luck and Thank you again. I hope we could pay for only 10,000 Yen per month. Probably 500 $ or more. What can we do.. ?! I wish the air in Beijing is clean and nice for your health.
I was told when I went through FCR chemo the first time (in Tokyo) that I should not go to China, because hygienic levels are sometimes low and getting something like food poisoning could be extra serious. Nonetheless, my job requires me to be in Beijing 6 months per year, so that's what I do. I don't take any extra special precautions regarding germs, but clearly that would be a really good idea.
The full-price of FCR chemo in Japan cost me about $10,000/month for six months ($60,000 total) plus the occasional CT-PET scans that cost about $1,000...as well as a whole lot of doctor visits for blood tests. Again, that was the full price without insurance. My employee health insurance picked up most all of that. As for me, on Imbruvica and in China, I have not seen a doctor in 6 months. I go to a clinic and get a blood test from a nurse once a month, monitor the results myself, and e-mail them to my doctor in the USA to see if he agrees with my amateur findings. (He usually does.)
I suggest you post your husband's bone marrow test results when they are available and ask what they mean.
Neil
Alright. The result will come out next week. I am so nervious. I want to prepare to understand what it means as soon as I see the result.
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