How Often Do You Think About HCL?

Joined: January 16th, 2018, 8:38 pm

January 25th, 2018, 5:18 pm #1

For the first 4 or 5 years I probably thought about HCL almost every hour of the waking day. At close to 13.5 years it probably goes thru my mind about 5 times a day. Not sure if that is accurate? I sometimes get anxious if I think about the implications of it coming back. Right now I am more concerned with losing some weight!
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Rob
Rob

Not much

January 25th, 2018, 8:37 pm #2

I think about age. There's pretty much something for everything that hits me, except age--nothing for that. HCL is in check, for me, for now.
Last edited by rbmac5 on January 28th, 2018, 2:12 pm, edited 1 time in total.
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Timothy Clune
Timothy Clune

A lot

January 26th, 2018, 3:58 pm #3

For the first 4 or 5 years I probably thought about HCL almost every hour of the waking day. At close to 13.5 years it probably goes thru my mind about 5 times a day. Not sure if that is accurate? I sometimes get anxious if I think about the implications of it coming back. Right now I am more concerned with losing some weight!
Hey Brad,

With my longest remission since my initial treatment with 2cda in Mar 03 being about 36 mo, I think you answered your question in my case already. I would say it is always in the back of my mind... planning for the future, money, etc... always trying to stay in good shape financially so I don't leave my wife or daughter stuck if I die of a complication related to the hairy cells... trying to live life to its fullest... enjoy time with the family, my dogs, friends, etc...

I am very glad that you are having such a long remission... may it last another 13.5 years my friend!

Tim
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Joined: March 27th, 2014, 7:18 pm

January 28th, 2018, 7:26 pm #4

For the first 4 or 5 years I probably thought about HCL almost every hour of the waking day. At close to 13.5 years it probably goes thru my mind about 5 times a day. Not sure if that is accurate? I sometimes get anxious if I think about the implications of it coming back. Right now I am more concerned with losing some weight!
Rarely. Everyone's different, but I don't even necessarily think about it affecting me when I check this site. It's a factor for long-term planning (should I change jobs now? have I saved enough yet, in case I need to retire early?), and there's a certain amount of scheduling to keep up with (when was my last blood test? how long until the next one?), but it's just not a big deal.

It's not unreasonable to have it cross your mind every waking hour when you're in the middle of treatment. (In fact, if you didn't, people might wonder if you had memory problems.) On the other hand, once you get into remission and get back to your usual routines, it slowly fades away. It goes from every hour to most hours to some hours to – hey, I don't think I thought about HCL at all yesterday, for the first time in months. For most people, about two years into a solid remission, those "life-changing" feelings are gone, and you're back to being irritated at minor things instead of focusing on what's important.

One of the things that the "old timers" on this site have noticed is that people are much more worried when they're first diagnosed. Shortly after treatment, when your counts start coming up, you usually start feeling better. After a year, it becomes routine. So we hear from people a lot initially, sometimes almost daily for weeks and weeks, and then they fade away. Five years later, we get an annual note. That's one of the reasons why the "anniversary" posts make me so happy: people are out living their lives, and come back once or twice a year to say hello and offer their encouragement to others.
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simone
simone

January 29th, 2018, 4:53 pm #5

hi,

this is exaclty what I think and this is same of Waid.

during your diagnosys , you think if your life will be very short, than after treatment if this look good, you can understand you can life with your leukemia.

good day
Simone
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Joined: April 19th, 2012, 1:40 pm

More than normal at the moment because...

January 30th, 2018, 8:56 pm #6

For the first 4 or 5 years I probably thought about HCL almost every hour of the waking day. At close to 13.5 years it probably goes thru my mind about 5 times a day. Not sure if that is accurate? I sometimes get anxious if I think about the implications of it coming back. Right now I am more concerned with losing some weight!
after 3 tests in a row on a down ward trend it obviously makes you wonder!

Comments on my last blood test re Cold Agglutinins, and waiting to see if my HCL lady will contact me re the results.

My get up and go is on strike at the moment.

My lady is not well, which tends to make me think about our mutual health and support.

Things will be great when spring arrives !! Amazingly some trees are already in blossom here in France - far too early, so we might have another year without fruit in our garden.

Best wishes



Charles



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Joined: March 30th, 2003, 5:17 pm

April 30th, 2018, 7:53 pm #7

Bonjour Charles,

I don't think about HCL much--but then again I'm doing OK for now. Mostly I think about this site now that's it's gone into the dark side of the new software muddle. Mutual support?--you didn't mention kids, are they a a factor? My wife and I do not have kids, and we tend to be rather private socially. So I suppose it's a nursing home for either of us when the other dies first. I don't think much about that either. I tend to live for the day. Right now, for example, I'm done with lunch, salmon and rice, and presently nibbling on cheese and wine, going over emails and posts.
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Joined: April 19th, 2012, 1:40 pm

May 6th, 2018, 3:42 pm #8

Bonjour Rob,


First of all many thanks once again for all your efforts on our behalf. Are you a bit happier with the site now or do you still hate it?


One of the reasons I like this format (and I know you don't agree) is that I immediately saw your reply on an old post – it is very unlikely I would have seen it under the old system. I much prefer to be able to see 'topics' and 'latest post' as priority. It is what I am more used to and I wonder if this is a USA – Europe difference.


There seem to be a lot more 'Vets' posts here. Is that because there is now a lap-over. I'm ex UK Royal Navy and was in at the time of 'Vietnam' but was never there of course.


You mention children, I am an adopted Papi and have just returned from a week on holiday with 2 of my lady's grandchildren – it did not go well - the elder sulked much of the time when she couldn't get her way as she does at home. I could do without the stress of kids who are not taught respect for the older generation !!


BIG question ! The reason I say I could do without the stress (just now) is that I am 5 weeks into a new type of Cancer treatment – non HCL specific but my hematologist (here in France) has agreed to the trial. I am very excited about it and would like to talk about it here but it may all come to nothing and be a waste of time! Some of it is very new, not easy to explain, could revolutionize cancer treatment (we've all heard that before!!! ) but is also very controversial. And, I don't won't to be considered a nutcase !!


So, would you recommend waiting to the end of the 3 months trial to see if I want to say anything (ie positive results) or, give some idea now on a new post – that is after my 1st monthly blood test next week?


Best wishes




Charles
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Joined: March 30th, 2003, 5:17 pm

May 7th, 2018, 12:02 am #9

My own thoughts are that if you're going into a trial--do the trial. don't go half-in, half-out.

The site has advantages--none of which offer me as much as the old site. Also, the folks who took over have sent ambiguous billing requirements; free, not free, 29 bucks a year, 10 dollars a month, and two names for the business; Tapatalk and Bulletinboards.com. It may all be connected or not. Also the controls for the site are extensive and even so the do not give me the control I want, like a page for html that I can easily manipulate.

As it stands now the site could drop off anytime. I have no idea what will happen here. I do know that anyone who likes this type of site can easily jump in and create an HCL place. Personally I do not care to hack around on a mystery web-thing until I accidentally figure out how it works; don't want to read about it, study, it, learn new stuff, etc.
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Joined: April 19th, 2012, 1:40 pm

May 7th, 2018, 12:28 pm #10

Rob,


I think I understand a bit better now why you are very uneasy. It must be VERY frustrating having to leave behind a system that you knew inside out and, could control, to one where there is a lot of obscurity and uncertainty.
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Joined: April 19th, 2012, 1:40 pm

May 7th, 2018, 12:36 pm #11

Rob,


My question re the trial was not whether I am committed to it 100% - I am!


The question was, in your experience (over the years) is it better to try to explain to people (here) what I am doing i.e. in the early stages or, wait till much later when and IF there are real positive results?
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Joined: March 30th, 2003, 5:17 pm

May 8th, 2018, 3:06 am #12

Dacuna,

I thought I answered your question but I don't see it, either I did and it never posted (for a host of reasons) or I thought I did and I'm losing it?

Your choice to post early results or later results is totally up to you--both ways have been done here.

For me, the posts here are confusing to follow compared to the outline style with titles below each post. As for the bubble up effect of posts the way you like, I had that option in Network54, but no one seemed to mind, I didn't, but the latest posting could be made to show at the top of that page.I can chose this here or not. Due to the structure on the page I chose to have the posts show descending and we have a built in function for unanswered posts.

Presently two people are having trouble logging on without being required to go through FB or Google or something like that.

On windows 10 I have no problems. On Windows 7 I get a commercial menu to buy Tapatalk every few posts I open. I have to click on the homepage link in my bookmarks to get back to the posts. I have no idea why. I do not care to learn why.

Anyway please feel free to tell us what you're up to, where you're at in the process and how you feel; recommendations, weakness or strength with the trial, if you have information web links, a doctor's opinion/observation, or you have questions along the way, news, progress all that.

Because ( minus my moaning) the place is here to share experiences and knowledge. I have learned so much here. When I first had HCL, I had to phone into a cancer center and someone there eventually put me in touch with someone who had HCL--one guy chatting over the phone, one time. That was it. He said don't worry. I had a few more things to ask but that fellow didn't know much--this site filled the void. I am surprised there are not many other HCL sites tho.  I looked around and found HCL lumped in with other leukemias. I wanted this place to be fast, open and free of donation buttons--I still can't find out how to delete the one on my page.
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