42 replies to this topic

[IRC Admin]

Hello,

 

We received a suggestion to start a NEW sub forum for CML patients whose medication is not working or going through a resistant CML. This new sub forum suggested will be listed under the existing CML forum. I wanted to get your views, feedback, thoughts on it. Please share.

 

Thanks!

Pirlo

 

 

9/15/15

To all the respondents of the CML discussion board regarding the possibility of a sub forum for the resistant and refractory folks:

 

Thank you for taking the time to share your thoughts about a possible sub-forum on the CML discussion board.  As your moderator, I read all the posts and thank you especially for your very thoughtful responses here, on both sides.  This is the largest group on the discussion board and it seems the strength is in the willingness of so many to share your experiences, considerable expertise and yes, your humor.  Your questions and comments have expanded my understanding of CML and the many issues confronting CML survivors and their caregivers.

 

At this point, we will maintain just one CML forum and I think the suggestion to start new topics (sub-topics) as needed is the key.  If the topic title isn't relevant, it can simply be skipped. Also, we are looking into the possibility to enhance the search function, so that one can search by the post title and the keywords in reply. We will keep you updated as we have any news.

 

Thanks!

Pirlo

[kat73]

This does not currently apply to me, so I'm responding as one of the majority who are doing pretty well.  I can certainly understand why someone who is struggling with a worse picture would like to and need to have a subforum.  But I hope they don't disappear from the "regular" one, as we all benefit from their experience, plus you never know where encouraging and helpful words might come from.  I sort of don't want to Balkanize the community into haves and have nots, as well.  If they want it, sure, go ahead.  But I will want to follow it, too, and be allowed to post in it.  I would hope for fluidity between the two groups.

[SusanL]

I have been following this forum for 10 yrs.  Sometimes contributing my experience or searching for information or encouragement for myself.   I am currently on 4th TKI and barely detectable.  The further out I get in years and the fewer people on the TKI I am on the less I can relate to many of the issues brought up by others.  I often wonder where are the others I used to see here.  Are they so "well" they don't need it? I feel caught in between the two,

  I agree with everything kat73, said above.  I have need for something more but don't want to loose what we already have in any way.

[gerry]

I agree with Kat's comments, I can also see where they might just want an area they can head to without having to read the other threads. When you are struggling with your treatment, reading about people stopping or being able to just take their TKI and get on with life could be disheartening.

[Trey]

I don't see the purpose since it would fragment our group, which frankly does very well when all together in my estimation.  I think all of us with CML are interested in how everyone else is doing, no matter their particular special requirements or needs, and we all want to help them however we can contribute together as a group, not as sub-groups with sub-special interests.  We all have our sub-special interests, but we should remain a group united by our common issue, which is CML.

 

Count me opposed.  We are a special group, not special interests.

[rcase13]

Well damn Trey now I want to change my vote of yes to no.

[tiredblood]

I like to read about everyone's experiences, because although I'm doing well on my TKI, I know my PCRU could go south at any time.  You guys are my *only* support group.  There is a LLS support group that meets nearby during the day, but I work full-time and cannot attend.  OTOH, I can understand the request for a separate forum.

[Cool Hand Leuk]

I rely on the advice of everyone not just those with a specific problem

[dede5]

I don't see a need for it, based partly on the fact that nobody is obligated to read or participate in any thread that doesn't pertain to them. I think we should remain a united group. IMHO

[hannibellemo]

I tipped one way or the other after reading every post but I really believe we are stronger (and smarter) as a group and I believe that those that aren't responding as well would benefit from the group as a whole. There are many of us who are doing well now but weren't always doing so well that have much to share with those who are now where we were then. We have some very intelligent people here who know as much as the physicians through years of research. I hate to think that some members needs aren't being met, but they only need to reach out.

 

I would like to remain whole, not fractured.

[rct]

My Mrs is one of the silent sufferers.  A forum full of people that are stopping their TKIs, reducing their TKIs, enjoying another round of golf, or just all around having a great day is not a place she wants to go.  It's unfortunate that those that post the most are generally those with the least problems, and they can, note I said CAN, minimize some of the things that some people really have a whole bunch of trouble with.   If someone we know that knows her situation were to come here for a little insight they would question her situation greatly compared to the average poster on the internet.

 

It is difficult to be happy as we are apparently right up on the verge of a cure, right?  That "cure" is only for some.  Some folks stop the TKI for only a week and get some numbers in an otherwise vacant PCR.  That really is a have and have not situation, like it or not.

 

Just some experience from a caregiver, and maybe some insight as to why some might want such a thing and why some others just don't participate.  Nobody wants to be the Debbie Downer at the cafeteria table.

 

rct

[IRC Admin]

Thanks for the feedback. This is very helpful. Keep it coming! 

 

pirlo

[mikefromillinois]

rct, I have been coming here daily for over four years.  I come here to learn about my disease - the good and the bad.  I have had a very positive response to my tki and I am now in a stop trial.  Yet when I read about someone who hasn't had it as "good" my first thought is "there but for the grace of God go I".  And my second thought is "someday that could be me" - so in that context I would like to learn about the things that might 'go wrong' for me some day.

 

I think that the priceless value of this forum is that we can share our experiences - all of them - and in doing so we can help each other learn more about our disease.  Frankly, I believe that MOST of us here learn more about CML in this forum than we do in our doctors' offices.

[kat73]

I don't know if I'm allowed a second comment, but here goes.  I think everything that has been said so far has great value.  But I am particularly moved by the feeling of being left out of the party, expressed by those who are struggling.  I can still bring up the acute anguish of feeling so separate from the herd of well people that I felt in the early years, and I think this is very analagous to that.  Isn't there a way to support both forums?  To "belong" to both?

[dede5]

I think that the priceless value of this forum is that we can share our experiences - all of them - and in doing so we can help each other learn more about our disease.  Frankly, I believe that MOST of us here learn more about CML in this forum than we do in our doctors' offices.

I strongly second this notion, especially the last sentence. 

 

I fall somewhere between the two extremes. I think we all know whichever end of this spectrum we're on, it could change in an instant. I'll be the first to admit I don't read threads about TKI cessation, because it doesn't apply to me, but I'm not resentful because they are there. Also, I think they are making themselves guinea pigs to hopefully blaze a trail and give the rest of us hope. I like to think some of us in the middle can offer hope to others as well. That being said, I would hate to think it's considered 'rubbing it in their faces' and making them feel worse. 

[Gail's]

I see the point of view of the person who feels discouraged by the happy talk while they are struggling. I do believe that we all benefit from the experiences of others. It was from this forum that I got so much support while going thru some awful side effects.

Could the folks who are struggling start new topics as needed? And maybe we could go back to a lighter news topic instead of putting our silly stories on the serious topics. I just don't want to lose the chance to learn from all and give encouragement and sympathy to those who struggle.

[Trey]

Trying to carve out a sub-forum is problematic for practical reasons.  The proposed sub-forum is: "medication is not working or going through a resistant CML".  I don't know who that includes -- defining criteria is very difficult.  Is it for those who do not respond to drugs at all?  Any drug?  Don't respond to some drugs but do respond to other ones?  Sort of respond to some degree?  Intolerant due to side effects?  How intolerant does someone need to be to be in the group?  How about those who respond to drugs but to a "lesser degree"?  Drug(s) work for a while but they become resistant after some period of time?  What if they change drugs and then respond "better", do they get kicked out?  Slow responders included?  How slow?  What about those like rct's wife who have trouble taking enough drug due to persistent low blood counts?  Are low-dose patients due to side effects included?  How about anyone who is not a fast responder?  We are up to about 95% of the CML patients at this point.  So who gets excluded?  And if it is not exclusive, what's the point?

 

Lack of adequate drug response is a multi-faceted problem.  But it is problematic to define who fits into such a sub-group, which must be exclusive in some way.  Who monitors, who determines entrance criteria, who do you exclude, when do you get kicked out due to improved drug response?  Practical issues abound.  Someone will get their feelings hurt.  Is that a problem?  It will continually be "Earth to Brooke....come in please...." to referee all the issues.

 

People can already meet the need with the current Board structure without all the hassle.  If someone wants to have a topic about some specific sub-issue, then they can start a topic with the appropriate title.  If these folks don't want participation from anyone who does not share their particular sub-issue, they can say so in the title and I am sure their wishes would be respected.

[Antilogical]

Creating a sub-forum for folks that prefer more serious talk about their issues has pros and cons:  Some folks may overlook or ignore the drill-down, keeping the group smaller.  Then again, that sub-group may lose important insight from someone who does not care to monitor multiple groups.

 

It's hard to say which is better.  I guess my vote is "It Doesn't Really Matter", because any decision is bound to make some people unhappy.  And vice versa.

[Dona_B]

I did not vote. I can see the pros and cons of both sides. We are an active large group and a serious question could fall to the bottom of page in a day or two if not the people who are qualified to answer don't stop in daily. In my spare time, I have been glancing through the history but with 170 some pages, it is overwhelming. What I'm about to suggest has been done on the front page. There are broad categories but it's hard enough to keep track of just the active CMLers without adding in all the other blood cancers. Not that I wouldn't love to meet them all but I have yet to get all the CMLers straight in my mind. And I feel like if we posted in the topics of general interest or whatever it's called, we would just unintentional take it over due to our size.

 

How about multiple subgroups just for CML? Such as getting to know you or the CML cafe (where CMLers can rant or just talk about their day or the weather or whatever, if one wants to poke fun at side effects this would be the place), maybe a healthy subgroup where we could discuss diet, essential oils, accupunture, etc..., those who have stopped their TKI's and are still be monitored could have their subgroup, the main health subgroup would be just be devoted to CML health questions, side effects, terms, etc....but anything health related would be under this subgroup. We would all be together and would be free to visit any or all the subgroups. Those who wanted more could visit the lighter subgroups. Perhaps the author of a new thread could add tags such as a specfic TKI. Those of us on a different TKI could back off.

 

If the LLS would determine it is in the best interest to separate the groups into two, would we be welcome to participate in both but respect the boundaries?

 

Also, I must apologize. I have commented on older sillier posts bringing them to the front. If this has offended some, I'm sorry. To me laughter is a form of medicine.

 

Edited

[Billie Murawski]

I voted no, I don't think it is necessary I have been a member of this board for 5 years and I feel that everybodys questions are all answered because of all our experiences. CML affects us all differently, we all get different crazy side-effects and just because one person has chronic diahrrea doesn't mean every one else will get it, sharing how we deal with these problems is one of the reasons this board exists. 

As far as dose reduction goes or even tki cessation goes that is all new territory. To all our newcomers you have been through the worse time of your life, and yes we do get side-effects that are hard to get used to or just plain don't work but thankfully there are more tki's available now that just about everybody responds to. I was dx 2007 the only tki available to me was Gleevac so I had to take it for 3 years, because of other health problems and medications I was on I was sick all that time. I never even knew this board existed until nov 2010 I was not told anything about my disease except how lucky I was because they now had a drug G and all I had to do was take a pill a day for the rest of my life and I'll be fine because I had the silver bullet.

 

There is to much talk about going off your meds as soon as you reach pcr, You have been falsely led to believe that as soon as you

reach pcr for a couple years you'll be off meds that is not true and if you are thinking of trying to do it you are playing russian roulette with your life. It's not just a matter of well if my numbers go up again I just go back on the meds. Nobody knows if that will work or not. The meds are too new and only your doctor can guide you in you're treatment. I would hate to see anything happen to anyone because this seed has been planted.

 

 Scuba, Michael, whatever when you get your masters degree from I cured cancer university I'll listen to you. Don't respond to this and I apologize if I offended you  but I feel it had to be said.        Billie