42 replies to this topic

[scuba]

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

 

Billie - You invite response even though this thread is the wrong spot for your attack on me - perhaps you can start a new thread.

 

"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."

 

A few years ago - not that long ago actually - there was no talk about stopping TKI therapy without risking very bad things. The thinking was full dose no matter what was the protocol despite the bad side effects.  Then they learned that drug reduction can work. And then "stop" trials were started and more and more data was and is being collected to show that cessation can work - in as many as 40% or more patients. And the data is showing rather convincingly that even if restart is necessary after losing MMR  progression free survival is resumed. This is not my opinion out of the blue. This is what is being reported. My own personal trial is not being done blind. Dr. Cortes, a renowned, researcher in the field is monitoring what I am doing. If the risk to me was high he would have condemned my approach refused to have me as his patient and otherwise tell me I have a death wish. Instead I am part of his dataset regarding cessation. I share what I am doing and how I got here because I thought people on this forum would like to know. 

 

But I suspect that is not the point of your attack on me. I believe you feel that opinions of my type and what I have learned and applied should not be posted in this forum. That it will give people false hope or misdirection and falsely lead people to a wrong path. I can't imagine that this forum exists only for people to express "correct" thinking that is approved. Perhaps posts should be filtered by a committee appointed by experts?

 

I have had a very rough start to CML when I was diagnosed. Gleevec didn't work, my bone marrow was a mess and I had severe disease. I was borderline accelerated phase with all kinds of chromosomal abnormalities. My first doctor just wanted me to do more of the same and had no experience outside of his current practice. He simply didn't know about other approaches.

 

This forum was and is a terrific resource to learn what others were experiencing and thinking. All of the ideas - with pros and cons and debates is what makes this forum so useful and helpful . What I did was read, learn, study and apply. I shared my journey on this forum as so many others have and highlighted how I feel along the way and what I have done. I have NEVER used the word CURE. So i do not have a degree from "cured cancer university".  And we have already seen how many "doctors" are misleading their patients with poor treatment.  You wrote, "only your doctor can guide you in your treatment". If that were true, then Trey should hang up his shingle. He has more insight to what doctors should be doing in order to properly treat their patients than many of the doctors who are licensed to treat CML. I will never follow a doctor blindly.  But that's me. Others have to do what makes them comfortable.

 

Regarding the original point of this thread - I have no vote. Either way is fine. I see merits to both arguments.

 

By the way, Billie, consider shiitake mushrooms! Great for your immune system.  Another reader on this forum sent me a private message on these mushrooms. Very impressive when I read up on them. I eat them regularly now. Yum.

[soundoff]

Calm down people...One fourm is enoughf

[PJM]

I am one of the ones who is not responding well to one of the main TKIs having failed Tasigna, Sprycel, and all three dosing levels of ponatinib.  I am currently on Bosulif, a TKI most never take.  My cml struggle has been one of dashed hopes, utter frustration with a great feeling of discouragement.  My doctors are constantly discussing my case and the direction of my treatment.  I am awaiting results of latest PCR to see if Bosulif is having any effect on my disease. I am transfusion dependent with my weeks filled with 3 visits a week to City of Hope and endless waiting for test results etc.  A bone marrow transplant is a likely option resulting in fear and uncertainty defining my life right now. 

 

It is very difficult to come to this forum daily and find something I can relate to.  Not many if anyone on this forum has a slow or non-responding scenario surrounding them and I am painfully aware of that fact as I read through the many posts.  While I am  thrilled for my cml colleagues and their successes, the reality is I don't think many can relate to me or my struggles.  If you look at the threads over the past few weeks, only a small percentage of them relate to those of us who are struggling with response.   It is a fact that most people respond well to the TKIs  and move on with their lives.  But, a very small percentage of us  don't.  Therefore, I think It would be helpful to have a subgroup for those of us who are not responding to therapy as hoped. Even if a subgroup is not formally created, the reality is that it already exists and that needs to be acknowledged.  

[Buzzm1]

A suggestion might be to encourage forum participants to search for, and post to an existing thread on the same topic, whenever feasibly possible, rather than starting a new thread.  As things are, so much really great information, on almost every imaginable issue, becomes quickly buried, almost requiring much of it to be mostly unnecessarily reiterated over and over again.  There actually are a limited number of issues around CML ... each could have it's own indexed thread ... is anyone interested in beginning to list the individual issues around CML? ... if so, we could create a pinned index ... the thread chronology will remain just as it is now, with the most recent thread posted to, shown first, but in addition there would be an index which would allow anyone to quickly access historical info and post on given issues.

[tinman1939]

I like the one-stop-shop approach to this forum and would be less apt to look or post elsewhere. Life with this blood cancer is already too complex. Why split up what really is a useful forum for all who are tackling CML? #One #NotTwo

 

[jjg]

I haven't posted much lately for a number of reasons. One of those reasons is that a few months back I felt that one of our more active members was showing a disrespect for both the disease and those who have not been lucky enough to do well on the standard TKIs. I said this and was abused. I can't be bothered going back to dig up what was said, there may even have been an apology (there damn well should have been) but anyway I largely took a break from this place.

I'm happy with the mix as it is but then I have always responded to treatment and don't know what it is like not to respond. If anything were to be split off then I would suggest splitting of posts about ceasation trials.

[gerry]

Reading through the comments I've come to the conclusion that I don't like the idea of sub forums. Creating a sub forum for stopping TKi would make me feel like I no longer belong here. I continue to be here as I figure I might be able to offer support to someone who is hoping to stop, or has just started that journey.

 

Trey is correct in his comments about "who gets to make the decisions on whether someone is allowed to visit/comment or not on a sub forum".

 

PJM, i don't want you to have to disappear off somewhere where I won't follow your journey, i know you and others are on a hard road and there is nothing I can do to help, other than offer thoughts and prayers.

Is it possible to have individual threads saved into your favourites, that way you don't have to read other threads? You can then hit your favourite and as long as your login doesn't need to be reentered, you'll be able to go straight to your thread without having to read others - just an idea. Make the thread topic clear as to the subject - Trey might be able to help with that, he can be pretty direct sometimes.

[chriskuo]

I think a simple solution that would not be too disruptive would be a subheading labeled Resistance underneath the CML heading.

This would allow the smaller number of  threads related to resistance to be grouped together and easier to find.  If people have no interest in or knowledge of resistance, they could easily ignore these threads. 

[soundoff]

I belive LLS is at fault here.
About a year ago they changed the CML fourm abandoning all of our old posts. We lost years of valuable information. Including my journey through TKI failure.
That being said where the F*** are our old posts? Simply put we all obviously were at some point in time very sick or still are. I barely made it to where I am now and to have people minimize that is disheartening.
Many of us old time CML'ers journeys have been lost and PJM and others can't see that any longer.

[hannibellemo]

Soundoff,

 

I agree with what you just posted. I'm disappointed with the new site. It works ok but it's not as good as the old one. The only reason I can think of for the change, and I must admit it is a good one, is the attacks we were having by spammers.

 

I'm not adverse to change, But I really miss being able to go back and read some of the old posts, some because they were just so helpful, some because people posted who are no longer on this board and some because they were just so damn funny!

 

I already feel we have been fractured to some degree because some of us just weren't up to or able or even just willing to make the change to the new site - again!

[SusanL]

I commented early on when this topic came up.  After reading all the comments and especially Trey's last one, I can seen that the diversity and quality of knowledge of the people on this site, people who are involved and in charge (as much as they can be) of their health is what makes this site work so well.  I would hate to see ONE lost.

  I can see maybe sub-groups but a whole new, separate group, I'm being swayed to the no side.

[Buzzm1]

Soundoff,

 

I agree with what you just posted. I'm disappointed with the new site. It works ok but it's not as good as the old one. The only reason I can think of for the change, and I must admit it is a good one, is the attacks we were having by spammers.

 

I'm not adverse to change, But I really miss being able to go back and read some of the old posts, some because they were just so helpful, some because people posted who are no longer on this board and some because they were just so damn funny!

 

I already feel we have been fractured to some degree because some of us just weren't up to or able or even just willing to make the change to the new site - again!

The posts of the old forum still exist, at least they did when I was cleaning out my old emails six months ago, and if so, a link to them could be pinned in the header of this forum ...

[SusanL]

I have to add, a big YES to "this is where we get our knowledge and the latest research and information, not from our Dr."

   My Onc gave me the LLS web page when I was diagnosed in 2006 and I think she regretted it many times as she is a Dr. who thinks the best patients are the ones who get all their information from their Dr.  She quickly found out I knew things before she did. She is an awesome, dedicated Dr. I have great confidence in but  what Onc has the time to read everything new happening on every form of cancer much less if you only have 1 patient with CML.   Over the past 10 yrs she has come to appreciate what I have learned and

this board is the one place that gives me what I need to educate myself and have a say so in my treatment and that is a powerful, healing tool. And a wise Dr. that allows or encourages it.

[SUE]

When I was diagnosed with CML, almost 2 and one half years ago, I knew absolutely nothing except that  there was a big, scary disease called leukemia, and I had it.  Because of the people on this board, I learned what it was and what my options were.  I learned that at the beginning I should have a blood test weekly, not biweekly as my oncologist suggested.  I learned that there were other choices besides Gleevec, and that one of those might not cause the horrible side effects I was experiencing.   I learned that there was a possibility that switching to 50 mg of Sprycel, not 100mg as my new oncologist wanted, might work for me.   I learned many other things as well, including the fact that each of us responds differently and all anyone can do is present his or her experiences--not to convince others to follow the same path, but to show that many paths exist in this journey we are all on.

 

I voted no on the suggestion to form a subgroup, because I do think that everyone can benefit from hearing others' experiences. Some have been taking the meds for many, many years.  Others for just a few months.  And everywhere in between.   I want to thank  all the members for sharing their stories so that the rest of us can learn.   And I want to particularly thank Scuba for taking the time to share with us his feelings and thoughts about his own journey.  He has stated many times that each person needs to work with his or her doctor to consider the options available, and choose the path that seems best.

 

Sue

[SusanL]

regarding existing threads, Is there some way this can be encouraged or easily done by people opening a new subject on something that has had extensive contribution already done.  I responded several times when some subjects were brought up and then quit when the same thing kept coming up as a new thread.  If others have had the same experience I can see how someone new would think there is no one out there or my problem is different/worse than others and they will miss some valuable help.

[Antilogical]

Good post, SusanL. I think you hit upon the real issue - it's much easier to start a new, similar thread, rather than looking for an appropriate old thread.  A lot of good stuff gets lost.

[Trey]

While you LLS folks are trolling for inputs, the search function on this website is awful.  Truly stone age.  Possibly proto-neolithic.  Rubbing two rocks together and hoping it is a match, but only results in a flame-out.  Eureka, as in sucks like the vacuum, not as in "I found it" because you never do find it.  Often get "Flood control is enabled. Please wait at least 11 seconds before attempting to search again."  Totally antediluvian.  I didn't even get wet, but somehow there was a flood?  Searching on the L&LS Discussion Boards is like looking for a needle in an ant farm.  It's actually in the haystack, which everyone knows, but the website searches ant farms instead.  When did ants ever use needles, anyway?  If you search for "Idaho" it replies "No, you da' ho".  And where did that moose and buffalo post go, anyway? 

[Buzzm1]

While you LLS folks are trolling for inputs, the search function on this website is awful.  Truly stone age.  Possibly proto-neolithic.  Rubbing two rocks together and hoping it is a match, but only results in a flame-out.  Eureka, as in sucks like the vacuum, not as in "I found it" because you never do find it.  Often get "Flood control is enabled. Please wait at least 11 seconds before attempting to search again."  Totally antediluvian.  I didn't even get wet, but somehow there was a flood?  Searching on the L&LS Discussion Boards is like looking for a needle in an ant farm.  It's actually in the haystack, which everyone knows, but the website searches ant farms instead.  When did ants ever use needles, anyway?  If you search for "Idaho" it replies "No, you da' ho".  And where did that moose and buffalo post go, anyway? 

lol Trey, earlier today I wrote a post, in response to SusanL's post, which I didn't submit, saying almost exactly the same thing about the search function, although I used the "if" term, as in "if the search function could be limited to searching thread titles only" it could be used to develop an index to prior threads on the same issue.  As search exists now it retrieves everything and anything, essentially making it all but useless.

[alexamay09]

I feel quite strongly that we should keep one forum.  We are then all kept in the loop and are also there to support and share experiences. I am 3 years in and still fear developing resistance!

 

Alex

[rcase13]

Developing a resistance is everyone's biggest fear. Sometimes it seems more like a when it will happen instead of if it will happen. When it does happen I will draw on all the experiences of others to get me through it.