CLL Support Association

A good cancer

Just wondering how all of us with a "good" type of cancer are doing..this phrase angers me to no end...People may not see the damage on our outside but it definitely there on the inside...and for me it has been a long gradual ( not Always) deterioration of health and mind...I am not bitter about the cancer..not even people's reaction anymore...Sorry, I guess I am just venting..

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The dictionary definition of ‘good’ is something that is enjoyable, pleasant, not negative and to be desired. Anyone ever used one of those descriptions in relation to their CLL?

Of course what the medics mean is, ‘not as bad as’, ‘could be worse’, ‘not comparable to in awfulness’.

Whilst we all recognise that there are some truly awful, acute cancers out there with the possibility of less longevity, it doesn’t make our chronic cancer ‘good’. Comparisons should never be made.

It’s a bit like saying, ‘if you must be run over, make it your vehicle of choice. It’s slower moving, still deadly but the impact won’t be as immediate.’ Trouble is with CLL, it feels like it keeps reversing back over us just when we thought we’d struggled from under its wheels!

CLL isn’t created equal either. Frankly, if I’d been diagnosed in my late 70’s/80’s or had a very indolent form from any age and told I was very likely to be in the 30% of people who would never need treatment, I’d still be upset to have it but I’d have sucked it up. Not ‘good’ but not catastrophic in the health lottery of life.

I hear expressions like, ‘it’s a chronic condition like type 2 diabetes and can be controlled and viewed in the same way’. Well, I got that too so would never underestimate the seriousness of diabetes but I see the comparison rather like this. Diabetes is rather like having a wilful dog that with the right control and management, can be tamed and made to walk in harmony with you. Hard work but do’able.

CLL is like having an unpredictable tiger by your side that may seem tamed initially but never is. Sooner or later it will pounce!

Sorry if this sounds rather bleak but I’m not too keen on this CLL either at the moment.

In the health hierarchy of horrors, it may not be the worst but please, don’t anyone ever tell me that makes it ‘good’!

Best wishes,

Newdawn

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Well said Newdawn!

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Yes, my oncologist - well meaning I'm sure - said to me right off "oh, think of this like diabetes or high blood pressure, no big deal, we got you."

It's not like those diseases. There are things each person can do every day to help manage diabetes and hypertension. With CLL/SLL we're just supposed to stay strong, wash our hands, let the cancer accumulate in our bodies, and wait for the medical industrial complex to save us. Maybe.

I think it's a lot more like a diagnosis of HIV, if a comparison must be made. Of course our leukemia is not "acquired" like a virus and doesn't have the cultural baggage of AIDS, but the progressive nature of the disease and the need for heavy-handed cutting-edge medicines in order to keep our immune system functioning at some minimal level is much more akin to AIDS than diabetes. That's just my two cents.

/end rant

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Exactly. I agree with a previous poster who said something along the lines of its in your head, just as much as your body. Indeed it messes with my head despite no treatment.

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I think that’s absolutely right Chris and the latest W&W survey results demonstrate just how severely the knowledge of having this unpredictable CLL impacts adversely on people.

The emotional price is never good.

I’ve also lost people from devastating and fast acting cancers and there is no comparison. However, I know of people here who are fighting hard for survival too.

Thing is, there shouldn’t ever be comparisons. It’s a wide spectrum and the only time the word ‘good’ should be used is when it precedes the word ‘health’.

Newdawn

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Agree with this Newdawn. This disease is a killer whatever causes the death. IE infection because of cll.

Sue

That has brought on another thought for a post!!!

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Yes ,I agree with you,. And the messes with your head can be one of the worst "side effects".

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Wonderful response. With 17p and 11q we echo this entirely

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Well said.

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So agree with your take on this "unpredictable tiger"

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Very well said..I too have the diabetes bug....but as you said here with cll it is always waiting for the other shoe to drop...also it is hard to get motivated to do or rather start something....nice post.

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Excellent example and explanation.

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This post made me so depressed and anxious made me 😢..... I was offended when told it was the good cancer the nerve of these doctors to tell their patients that😣

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walkingspirit33

i understand

hang in there with all of us

Nonna

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Oh I will hang in there as you mentioned; it just gets harder to do at times..and I know others suffer more than I do...I think we should talk about the negative more..not just sit ,wait,and hope well today will be better.

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Needless to say there's no "good" cancer whatsoever, but I am not mad at the expression of "good cancer", only because I see how immediately devastating and earth-shaking most of the other cancers can be.

I saw it up close and personal with a friend of mine who had an absolutely horrible experience (I'll spare you the details).

With this one, I feel like we get more of a "warning" and an opportunity to make some changes in our lives and "prepare" if you will....so, no, I don't mind the expression at all.

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CLL is really a huge bag of nightmares that “could happen”. I have some physicians that act like it’s “no big deal” and others that express their sorrow that I have been given a “devastating diagnosis”. I’m not sure which is worse! One actually suppressed a snort when I told him I want to live 30 more years 😠😭.

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I would fire any doctors that treated my diagnosis as devastating

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It was specialist ENT so he did not have a understanding of what CLL involves. I was a new diagnosis, pretty fragile at the time and that comment set off a pretty impressive crying jag!

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I told my oncologist that I wanted to live till 85 at our first meeting. He looked nonplussed!

Virginia

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Love the "huge bag of nightmares". I am probably going to steal it.

Scott

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Compared to the leukemia that killed my Dad, sister in law and family friend all within 6 months of diagnoses it’s good. We are all doing to die, everyone is going to die even those without CLL. CLL has helped me face this head on and start to live. I do not fear death anymore and CLL for me is a chronic disease that may or my not be what eventually takes my life but I know of many worse cancers. My father died at 46 from acute leukemia and his brother at 77 died with CLL not because of it. I would have loved to have my Dad around an additional 31years, that would have been very Good.

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My sister at age 7 was given a 4% survival (died at 10y). I agree there is much worse news to get.

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I very much agree with your outlook. I am very thankful that CLL gives me some measure of relative good health to do those things that I can to prepare my family financial and emotionally for my passing. I am 70 yrs old and also know full well that we all have to die. I feel fortunate to have "the best cancer, if you are going to have cancer". My doctors originally gave me glowing stories of people who lived 20-25 years without treatment. Then after my FISH tests, I found out I was not so lucky and doctors are now talking about treatments just 8 months after diagnoses. Don't let it play with your mind and I know that is easy to say when I spend nights worrying. May God bless each of you and comfort you as well.

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Feel free to vent here, I often feel the same, God bless, Terry

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Agreed that it might be considered a “good cancer” by GPs but you still have to live with it and control it as it’s unpredictable and everyone’s body is different so it’s not one size fits all. It’s a heavy burden no matter.

My rant for the day - Hazel😊

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Feel free to vent anytime.

Funny though how I get more annoyed by the opposite behaviour: people who have to sympathize on how terrible this must be for you. I am very grateful to my luck and to the gigantic work doctors and patients did before us to come up with a way to tame the "tiger". So, yes, for me 'good' works.

Love to you all from day 1 at the hospital.

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Very best wishes for your treatment Antonio. Hope it tames the tiger in style!

Newdawn

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Best of luck, AntonioC. I hope and pray your treatment helps you “tame your CLL tiger”! (to borrow Newdawn’s great analogy)

SMS

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Hi WS33 :-(

It’s depressing, miserable and down right not fair - There’s a lack of information and unwillingness to learn , a ... get ‘them’ CLL’s through the door, not my problem ‘attitude’ amongst medics.

I so wish I could avoid them !! ( excluding a couple of nice medical folk I have met on this depressing miserable CLL void ... and only through my own efforts ! )

No body joins up the ‘bleeding’ dots it’s all so disjointed ! I’ve got an eye problem, a stomach problem, a bladder problem, face pain and nose problem with the menopause thrown in for good measure ! As well a business to run and all the numerous family stresses and their problems !

So when I was first diagnosed and told by the ‘stupid’ yes ‘stupid’ heamotoligist to go away and lead a normal happy life .. Derrrrr - It was because I was in consistent discomfort & pain that had eventually brought me to see you ! Plus now you’ve delivered my ‘good’ news, including your sprig of parsley advice .. how on earth can I step out of your office jumping for joy !

There is no excuse these day for anyone, not just medics, but in any profession to not be expected to KEEP UP TO DATE, IN TOUCH with the ‘real world’ & continue to contribute their own research on what they are paid and suppose to be experts in !

Good cancer ! A good, well informed, medical professional should not be using that kind of language; it’s misleading and totally totally disrespectful ! 😡

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Unfortunate terminology isn’t it - I have had this said to me and my dentist also referred to it as “old people’s cancer” until I put him straight! I suppose it’s trying to educate people (if they want to!) who don’t know the ins and outs of CLL ... they will never truly know what it’s like and I have given up explaining myself now!!! Out of all my family and friends I can count on one hand the people who really “get” CLL but I guess that’s life in general! Thank heavens for this lovely friendly forum xxx

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Sitting here wondering what descriptor would be accurate and less offensive. Any ideas?

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I also have recieved its the "good cancer" and pethaps it is in fact alot better than most. I have witnessed as I imangine alot of us have people with more aggressive deseases, and seeing their lives cut short. However it still remains uncureable, and it is very unpredictable and acts different in everyone. I was told 2 years ago that it would be a very long time before i need treatment if ever, and not to worry about it. Now i am being told it is seems to be progressing alot faster than they thought it would i am being reffered to another team, that handles treatment. Treatment i believe is still aways away, but its a bit of a different story than i was orginally told. All things aside though I am thankful for the advancements in medicine we have now. Thats my 2 cents lol, best wished to all.

Chris

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I work hard to stay in denial that I even have cancer. My lengthy recovery from common coughs, my days when I’m so tired I can barely get out of bed and the knowledge that cancerous cells are freely flowing through every part of my body without anything stopping them has made this “good” cancer undeniable. I admit I have used this term myself to explain my situation to people, to simplify things.

I recently had a friend say “Well everyone is tired at the end of the day, it’s just our age.” I had to abruptly end the call.

Where is the cure? I know it’s coming but walking this tiger is messing with my life. I want to set it free not learn how to live with it. Thanks for understanding.

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Yes I agree its not a very helpful or`correct label`.. I have had previous cancers and try to always put my best foot forward, so people DONT see what your going through on the inside.

I feel the GP`s in UK are now so defensive/depressed due to the NHS difficulties they dont want to know unless its ONE issue that has a clear treatment path. Im always apologising for being a complex patient!! I think they should have specialist GPs for the ever growing number of `Patients with more than one condition`, giving more time for getting to the core of things.I have three problems running beside the CLL Gall Bladder/ Bowel Adhesions Hiatus Hernia and want to sort them before I get further into the CLL condition, but the GP i had is not very helpful. I am sure they try their best but sometimes I feel theres nowhere to go apart from Private with its cost. Having taken early retirement there isnt much money left!!

My rant for the day,, thank you folks, I know it could be worse!!

P

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I'd rather hear good cancer than bad cancer and I suppose they are trying to give comfort. Being an oncogist cant be much fun and they got there with brains not their personality. They diagnose you and send you on your way. I was in a daze for days. They should route you directly to a counselor. Good cancer is an oxymoron like jumbo shrimp. We all need to find our particular way to fight the psychological symptoms of this disease. For those of us that have lost loved ones to cancer the anxiety is increased...at least in my case losing my father to lung cancer at his age 50 and my brother having Hodgkins at age 6 but living today. We likely have good periods and bad periods but living with a sword at our necks that we cant remove is challenging. For me I find comfort in the research and knowing we have good weapons at our disposal. Hanging out with my miniature Schnauzer helps as well! Best to all.

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Yes I agree there’s nothing good about Cancer, and this is a very variable cancer with some people needing frequent treatment and others not.

One thing that affects us all is knowing we have a cancer and in most cases are not starting treatment, this must be the only cancer where WATCH AND WAIT is an option and it defies belief that we are not given immediate treatment!

As someone whom had bowel cancer in 2004 and was operated on Easter Saturday and started Chemotherapy within 6 weeks, the last thing that would have been suggested waa watch and wait!

I think I would refer to CLL as a WORRY CANCER, we know you have it, but you can go home and worry about it!

Despite all of the above I treat every day as a bonus not to be wasted and keep working at 70 yrs young!

My motto is;

GET UP, DRESS UP, SHOW UP AND NEVER GIVE UP

Good luck to everyone and keep fighting

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I love your attitude. Sally

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You forgot shower up...I hope. Lol

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Hope you are doing well with your bad cancer. ;)

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I agree, walkingspirit, that even in my stage 0, W & W mode of CLL, my diagnosis causes havoc beyond my days of fatigue. CLL is always in the back of my mind. My emotional state gets the best of me some days. But, my worst days are during the week before my oncologist/hematologist visit. After the visit, I have some emotional times until I hear that because of my blood counts, I am still at stage 0. So many of us are on this never-ending roller coaster ride! It is difficult to explain to others how this effects me some days, even in my stage 0 state. Positive thinking gets me through most days, but I still have my moments of anger, anxiety, and frustration because “my retirement years were not supposed to be like this”.

Newdawn, I am always impressed with your rapid replies, your knowledge, and your understanding in your heartfelt replies. I am privlleged to have found this site and to have joined this community, and, most of all, I am privileged to continue to read your encouraging posts. Many, many thanks, again to you!

Wishing good days and good health to all.

SMS

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Thank you for your appreciative words SMS, they mean a lot to me 😊

I notice you also have arthritis and other auto-immune conditions and I honestly believe that the delightfully named co-morbidities tend to make this condition harder to live with. My joints appear to be progressing and deteriorating along with my blood levels. Like you, I hadn’t anticipated and certainly didn’t want my retirement years to be largely sat in hospitals, surgeries and phlebotomist’s chairs! It’s my 60th birthday in a few weeks time and I’m having to be dragged kicking and screaming to any kind of celebration. I’d love to arrange a party but I can’t summon up the energy or enthusiasm! (I realise that’s a terrible admission).

I’m still largely undisclosed so I don’t have to run the gauntlet of insensitivity but I do totally appreciate that people attempt to console in ways that they don’t realise are inappropriate. On some level, the ‘good’ description is borne from honest intent but total cluelessness (even from some medics).

The expression that really makes me bristle is the ‘you could be run over by a bus tomorrow’ platitude. My response is, ‘well, when your first thought ever day on waking is the possibility that you could be run over by a bus today, then you’ll understand how it feels to have CLL’.

Warm best wishes to all,

Newdawn

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Happppy Birthdaaay!!!!! Newdawn

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Thanks Big Dee but it’s not for a little while yet. I’m holding onto being in my 50’s for as long as I can! 😏

Newdawn

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Hello Newdawn

As I used to say, "I am barely in my 50's". :)

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LOL - ‘Bus’ - I’ll save that one for when I’m more ‘disclosed’ :-) Do celebrate ND - You deserve a lovely day ! X

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That is the BEST response ever! And so true! I am feeling fragile today and that have me a good laugh.

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Yeah you could be run over by a bus...Well damn it if I didn't have this good cancer ;I wouldn't be so tired...I might be able to jump out of the way..much less brain fogged to see the blasted bus coming..lol,lol!!

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Happy, happy birthday, Newdawn! And you are very welcome! I loved your “run over by a bus” statement and will probably use it in the near future.

I really understand your lack of enthusiasm for a birthday party celebration. With my CLL fatigue, erythromelalgia burning feet symptoms, and arthritis pains, some days I am glad to be upright and to accomplish a few household jobs, or meet friends for lunch, or run a few errands.

I do hope you do something special for yourself! We “CLLers” deserve very special times as often as possible.

This year, my husband and I celebrate our 49th anniversary, and I will celebrate my 70th birthday in October! Where does the time go? Recently, I had to cancel a long trip to Oregon for my nephew’s July wedding. I am very saddened that my life is so restricted, this time by my severe allergy to heat. I must stay in air conditioned spaces while everyone else is enjoying all the spring and summer outside activities.

So, again, I say find a way to celebrate yourself and what a great person you are in a way that best suits you. I am hopeful that my husband and I will be traveling northward to cooler climes this summer to help my body and to celebrate our August anniversary. And who knows what October will bring?!? Party on!!

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You truly captured my psychological journey in your response .., it is a roller coaster of ups and downs before, between and after doctor visits ... thanks for sharing and mirroring my own thoughts!

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Yes, tpetro, CLL is truly a journey not a time-limited experience so the roller coaster rides keep appearing in all my doctor visits from physicals and sick visits to my PCP, to my six-month skin checks at my dermatologist, and now to my annual colonoscopy with my colon cancer specialists due to colon cancer last March. Hard to explain to anyone what effort it takes some days to act and appear “normal”. It is so great to be able to vent to the great people of this community and to receive confirmation like yours that I am not on the roller coaster by myself!

Wishing good days and good health to all.

SMS

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The doctor that told me that was the last time I saw him after we had a rather VIVID conversation about his comment. I told him that it was probably GOOD that HE did not have it and that no cancer was good.

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Vent all you want to! I had a friend who was diagnosed with breast cancer and thyroid cancer a couple of months after my CLL diagnosis. She had two relatively minor operations, some radiation and was pronounced cancer free in about 3 months. I was thrilled for her! But even she has mentioned to me that what I have was worse because you can’t “ take action” right away to clear it up. Of course not all cancers are created equal. Just like CLL, other cancers can manifest themselves differently in different folks.

Still, I don’t like the term “good” cancer! No cancer is good!

BeckyL

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Hello Becky

Most people do not understand that CLL, unlike tumor cancers where early detection and treatment is key to success, that is not the answer for CLL. You may be able to live a halfway normal life until you require treatment just in time to save your life. May God bless you and give you strength.

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I too have several friends w breast cancer that are in remission and have. clearly stated they wouldn’t trade their cancer for mine! This is a life sentence and it has put me on an emotional roller coaster every single day.... it’s always something and nothing is ever fixed and always waiting on a test result or appointment to go to which causes huge anxiety . I have not had a normal day since being diagnosed and wish I didn’t know I had this - ignorance is bliss and boy do I wish I was ignorant!

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My internist was in vacation when her associate sent me in to have a biopsy on an enlarged node which turned out to be CLL...the very next day after my very unexpected diagnosis I was so pleased when my own doctor called... she told me that if she could choose to have any cancer, she would choose CLL because it was “the good cancer!” Both my husband and I were incredulous that anyone, especially a physician would say such a thing. I immediately sought out a new internist! Also because of her insensitive response as I learned more about watch and wait I decided to share my diagnosis with only a select few. At such a vulnerable moment, it was very disappointing to hear a doctor respond in this way.

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There are no good cancers....there are only different types of cancers and the experiences for those who have them, and how their families are affected, can be incredibly painful in its own way.

Someone I love has CLL and now that he needs treatment, we're entering unknown territory. My husband asked me yesterday "what do you want me to do...live in a bubble?" As vigilant as I may be, I cannot protect him from everything that this cancer may throw his way. Nothing about this feels good. However, I am very grateful for so many things, despite the situation we find ourselves in.

When I think of Lisa Minkove....Dr. Koffman....Austrine...Peter....and so many people on this forum, I wouldn't think of "good" as a way of describing their CLL. Let's face it, a lot of time and effort is spent on thinking about staying alive. Now, I'm not trying to be negative......just why a description of "good" applied to CLL is very misleading.

Cancer is a horrible disease in any form....especially when it cuts short a life of a child. It has cut short the lives of many children and I can only imagine the heartbreak those families go through. We also have people on the forum, whose have numerous family members that have died prematurely from cancer.

Cancer is NOT GOOD...in any form...and in any way.

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wow....My husband said the exact same thing to me..." I can't live in a bubble..." He has been neutropenic for 4 months.....and when your neutrophil numbers are .2 or .3 ....yes, my love.....you have to live in a bubble...with a mask on! And I have become so vigilant and compulsive about germs etc.....You are so right....nothing about this feels right....

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Yes, and the more time I start thinking about it, the more I see potential danger. All the things we took for granted.....

Kathy, I hope your husband's neutrophil numbers increase somehow so he can continue doing what he enjoys....I see he likes to garden.

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We would love to go out for dinner and just see our grandchildren

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I too live in a bubble with severe neutropenia: it sucks!

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It really has a huge impact on how you live your life and the precautions you need to take. Requires a lot of sacrifice, even in the little things.

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These "good cancer" conversations always remind me of the winter night years ago that I loaded my combative 14-year old son into the car & drove to the ER in the nearest town. It was a bad flu season that year with many hospitalizations, and I had taken him to his doctor earlier that day with influenza, but something just wasn't right. He ended up in the ICU with ketoacidosis, having devloped Type 1 diabetes. One of the well-meaning techs told me that if he (the tech) ever developed a chronic disease, diabetes would be the one he'd choose. Not being very knowledgeable about Type 1 diabetes at that time, I took it as a hopeful sign. Ignorance is bliss, I guess.

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I am CLL Un-mutated diagnosed in July 2015. I would like to Encourage you to consider that during the times in which you are not overwhelmed with the voices of this affliction, that you explore the exciting and hope inspiring knowledge that is made available through Patient Power, particularly on Youtube and the Patient Power web site. In addition, choose and follow commentaries given by specific specialists that interest you. I have found this resource to be a very positive dynamic to replace and overcome the digressive assault of Cancer. It is through this resource that I have gained personal access to one of the top leading research doctors with a focus on my CLL subtype. "Knowledge, Confidence, Hope".

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I too follow Patient Power and learned valuable information I was dx in 2010 after dx of breast cancer and 5 yrs later needed treatment . Infusions with a new treatment but didn't work. Now on Imbruvica and I feel great better than I have felt in years. Dr. Told me it's the best cancer to have I responded your wrong no cancer is the best Cancer is cancer . my biggest concern now and always on my mind is if I will get the grants every year to help with the very expensive medication. I feel for those that are so young to receive cll dx I'm 73 and am thankful I was able to raise my kids without this hanging over me I have my faith and support from friends and family that keeps me going God Bless all of you and you are in my prayers. Stumbling on this site has helped me everyone is so knowledgeable. 😘❤️🙏🏻🙏🏻

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I am all to familiar with the "Good Cancer Enigma". Another interesting interaction is the "How are you doing?, You look Good" perspective, as if we should be in a constant state of appearing gaunt and drawn in order to validate the condition. One thing for sure is when I feel good, I savor the moment! You are a trooper, stay strong.

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On the other hand, I liked it when my daughter said, after my MI with associated heart failure, and arthritis, 'you look really well for someone who has all the things you have!'

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I, too, follow all the videos and information on the Patient Power site, Smakwater. (One more reason for me to thank Newdawn and to include Chris from Canada for both directioned me to Patient Power.)

Information, lists of the best CLL doctors, life style information, medicine and clinical trials, and overall encouragement to learn because “Knowledge is Power” has made this site one I check frequently. I am better prepared for all my doctor appointments now that I have more information on CLL.

Wishing good days and good health to all.

SMS

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Since my husband was high risk CLL and it has gone quickly, we only heard that phrase once. Since his BR chemo failed, and we just started Ibrutinib.....after 4 months of neutropenia....we don't hear it any more....I agree with you.....no cancer is good cancer...

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Hi was he able to start the Ibrutinib even with neutropenia? I am hoping to as well since FCR didn’t work for me and I’m only 49. I have severe neutropenia after the FCR for over 2 months now and the neupogen shots don’t last long enough for me. And now insurance stops paying for them .

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Yes, he was able to start Ibrutinib at .5 of neutrophils.....and his lymphocytes were 90% in the bone marrow. Our doctor said the neulasta shots (neupogen) were just masking the fact that bone marrow was not producting platelets, neutrophils, etc...He had the shots for 3 out of the four infusions....He was supposed to have 6, but it was determined that the BR did not do the trick. After 2 weeks of Ibrutinib, his neutrophils were at .8, then last week they were at 1.1 We will see what happens on Monday at his 4 week check.

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All the best for him and you as support ! It’s not easy I know xoxo

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I am so glad to have people like you that know how this is so hard.....thanks for being such an inspiration....

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The "good" kind of cancer would call and ask permission before showing up, bring flowers or some kind of present and help clean the dishes after dinner. Mine did none of these things and in fact made me extremely fatigued and forced me to spend money I didn't have.

I would rather have the "good" kind of being car jacked than the "good" kind of cancer.

Scott USA/Maine

Wondering what ad agency my "good" kind of cancer uses...they must be really good

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I love your analogy and your great sense of humor, Scott. You gave me a laugh on a day when I am feeling overwhelmed with all my health issues, not the least of which is this “good” CLL cancer. Now, I am energized to make something good for dinner.

Wishing good days and good health to all.

SMS, aka, Sally from PA, USA

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To all you forum members...Thank you for your kind words and support; it means alot ,not to just me ..to all the others here who are dealing with it as well., thank you

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I have read all the comments. I think Newdawns description hits the nail on the head. It isn’t pleasant to have this hanging over us....... And....we can’t be positive all the time, it’s exhausting! We are allowed to feel worried and down sometimes - we are human. I was told it’s a good cancer and I may never need treatment for 25 years if at all - I felt neglected..... I was nearly 51 at the time and how wrong they were! I felt ill at diagnosis and Within 3 years I was feeling very ill, low platelets and no real quality of life with the fatigue and constant infections. I then had two years of intense treatment....again exhausting and tiring not only with the treatment but the exhaustion of keeping positive like everyone expects. And so many bone marrow biopsies and tests and blood drawing and injections in the stomach to stimulate the bone marrow. I could go on - it takes a lot out of you. I have been in remission for a year but again we never know how long for. Don’t get me wrong I am very grateful, however it’s not good emotionally to never quite know what is going to happen no matter how much I live every day enjoying the good things that I can the best I can. The trouble is with CLL is we do not all fit into the same category but we are treated as though we do. It is ok to feel lucky, sad, worried, positive etc we should be able to be just who we are without judgement about how we feel. I have every empathy for everyone who faces difficulties no matter how old or what the difficulty is that life brings. Sending everyone good wishes. Debs

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I’m with you on this reply- sounds like my journey

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Great answer....

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Well said Debs and hoping you have a long, long remission!

Best wishes,

Newdawn

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"Good cancer" is a perfect example of an oxymoron.

Staying strong and trying to avoid any sort of moron who thinks cancer can be good.

Michael

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I hear you walkingspirit33 I was diagnosed in Sept of '07 by my family doctor after routine lab work and he said "You have the good kind of leukemia." I was so angry because there is no "good" kind as far as I am concerned. I've "been around the block" a few times having worked as a nurse for 30 years and I thought his remark was uncalled for since I was in shock. He also told me I needed to get with a hematologist and that I would need need a bone marrow biopsy which I still haven't had.

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After a routine health check in 2002 that included a blood test my GP received the results and offered an initial diagnosis;" it could be an acute cancer with a prognosis of weeks/months" or, wait for it, " a sort of background leukaemia". Not very helpful in terms of the physical condition and disastrous in terms of my psychological well being. I arranged to see a specialist asap and enjoyed my first hot sticky toffee pudding and cream for years.

Michael

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I agree. When diagnosed i was told "This is the one you want".

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You've raised a really "good" point, and, triggered me into response.

I'm guilty of being on watch & wait reading several posts over the last few months. I got to the stage of "information overload" early on my CLL journey....most professions (medical, law, engineers, accountants etc) develop their own language/jargon....perhaps to impress, maybe to stifle questioning.....I just have my own spreadsheet & monitor the trends of my regular blood tests. Sometimes ignorance is bliss!! The more we know, the more we need to know....and often this just causes anxiety....which is worse than the physical side effects. We need to try & stay positive; smell the air, taste the wine, laugh with our family. For me life is still good.....maybe it could be better....but it is still good! I consider myself blessed to have a loving & supportive family....they treat me like a vintage car!!! They help keep me clean & shiny, take me on regular trips, let me choose the music, and rest whenever I need to (in case I boil over!!!). I still work a couple of jobs....keeps both mind & body active, & I have less time to ponder the worst.

I've just come in from a work shift, & today it is ANZAC day in this part of the world. Australia & New Zealand has a public holiday in commemoration of the fallen soldiers of past conflicts. This is similar to the oxymoron of a good cancer!!! ANZAC is not the celebration of a magnificent victory.....it is the remembrance of a glorious defeat!!!

Newdawn. Thanks for your posts, not just on this topic! You have a wonderful way with words, and paint great images. The CLL academics need people like you to break the facts/findings down to something most of us can understand and relate to. I hope you do celebrate your upcoming birthday in your own suitable manner. I just recently turned the big 70....right in the middle of a 6 cycle FCR chemo ....I didn't want a fancy party, as I didn't know how I would handle the treatment & everything. They organised a family surprise weekend at an island resort...accessable only by 4WD & barge. Everybody had a fantastic time, all the younger ones had photos galore & glowing words on their social media pages....it made me feel even better, knowing that they will always remember my 70th with positive fond memories....even though I opted (through tiredness) from one of the excursions!!

Live, love, laugh.....the time is still there....we still have to live & make the best of our CLL. I try to do stuff.....work around treatments/appointments.....looking forward to something we enjoy.....walks,trips, events.....helps keep me motivated.....the blood flowing, the adrenalin pumping.

Last thought....another side effect I have suffered from since being diagnosed with CLL.....I'm prone to hugging my partner & children much more often than before........... That, makes me feel good!!!

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Well said, Jomo7.

So glad you had such an amazing time for your 70th! A family weekend on an island resort accessible only by 4WD and barge! Wow!

Wishing you well,

Paula

P.S. Where was the island?

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Thank you so much for your appreciative words jomo and Happy Anzac Day. Also a belated Happy 70th birthday and glad it was a wonderful occasion. Hope the treatment is progressing well too.

Sometimes, when we receive a diagnosis like CLL, it’s all too easy to feel like an outsider at life’s feast but we need to push to the front of the queue and sample the goodies sometimes. I’ve eventually relented and arranged a birthday meal for close family and friends at a Turkish restaurant for the upcoming event.

Warm best wishes,

Newdawn

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Wonderful post. And I do hope CLL it self does little if anything to diminish you ability to continue to live to the fullest. And yes, you do seem to have a wonderful and caring support group around you.

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WS33,

I read your post last week and marveled at the stupidity of some people.

Amazingly,

I went to a walk in medical for treatment for a cough today and when my doc was informed of my CLL he said,”Oh, people can live forever with that “.

Judging from his old age, he must have that version of CLL as he looked about 90 y/o.

Unbelievable.

Jeff

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Nawwww..I don't think we live forever;we just LOOK and FEEL like we do,lol

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