Site I was browsing was cancercompass.com
It is a forum talking about apricot seeds. I am not agreeing with all I read, just putting forth the information. I am new to this disease, so I try to read up on everything. Most likely many long term with CLL have already gone through this process.
Hi Curling,
You’re quite right to read up and understand your condition and there was no criticism intended of you in the previous thread. I’ve read the posts and they were merely an attempt to exercise caution because even some of the more reputable cancer ‘remedies’ don’t always stand up to scrutiny in terms of being effective for CLL.
You are on a learning curve and your efforts are applauded. Please don’t feel that any slight was intended against you, it was against the dodgy claims often made by people pushing untested treatment methods.
Glad to have you with us,
Newdawn
Thank you, Dawn. I think we can all get bombarded as a newby trying to find our way through a lot of info, fear of such a diagnosis a nd what could be ahead. We want a quick fix to continue life as it was before. We need this support group and we try our best to keep each other informed and cautious too about quack remedies. I don’t take offence to any replies. We are all in this together and need to inform and help one another. Lucky we have these posts and we are not alone in our battles.
There is a list of reputable links we put together for CLL LIVE 2018 conference about a year ago... wotth downloading...
cllpag.ca/wp-content/upload...
~chris 🇨🇦
Great info. Have joined. Thank you
Hello Curling123
You are quite right, most if not all of the CLLers on here have went through the same thing. We search frantically for that magic cure. My W&W was only 14 months, so I did not have a lot of trial and error remedies. This is the best place to obtain information. Watch out for the quacks.
From a quick look at that site, while there is a specific section for CLL, there aren't all that many posts from people with CLL. It's very important to find information specific to CLL, not just leukaemia. What works for one type of leukaemia probably won't work with another type.
It's also very important to find a support site where the content is moderated by those knowledgeable about the condition and who keep away all the scammers making unsubstantiated claims to make money at the expense of others. Sadly scammers don't care about people with cancer - the more desperate their particular victim is, the more likelihood that they will make some money.
Neil
Curling - Most of us have been in that deer in the headlights stage, and many of us start out with Dr. Google. I did, and everything said I’d be dead in five years. It takes time, when we are on our own, to find reputable resources. I think that that’s why many of us try to steer others towards those and away from sites that sound questionable. We’ve seen them ourselves. Thank you for posting the link. It allowed us to review the site. I agree with Neil, having looked at it.
The CALPAG list is very comprehensive. cllsociety.org has good basic information, as well as information about latest research. You will also find a wealth of information here, including posts about the many things people have tried and eliminated, while coming to terms with their diagnosis. Welcome to the family!
Millions of questions re medicaments/vaccination-CLL
Re: Extremely High White Blood Cell Counts (Over 150,000)
Advice re exercise and cold showers.
Any information on pain re Ibrut
Re-branding
