Greetings everyone. Was diagnosed with CLL mid 2014. No treatment to date. I've made huge changes in my life to accommodate impending treatment - moving from my beloved Mexico back to Canada. Seeing a specialist in late July. Meanwhile, I am noticing new systems which I had no idea were connected to CLL until I did some research. Experiencing some flashes of impaired balance, heart fluttering, severe edema, brain fog. Oh so tired. Gut ache. I'm not sure if all the stress triggered this or not. My platelets are 90 - some other factors are mildly off. I wish I understood the blood tests more fully. Has anyone here considered homeopathy treatment or been involved with natural treatments. I would be very interested to hear your opinions on the subject. My initial response to these changes is anger ... I have so much I want and need to do - the fatigue stops me cold. Your thoughts and experiences would be most appreciated. Many thanks.
New to the group and New to CLL: Greetings... - CLL Support
New to the group and New to CLL
Sorry -- didn't realize the image would be so large. Thought it would go in the little circle and just be a face. OOOooops!
The image is great! Who did the painting?
Thank you. It is one of my paintings. As I said below, she arrived here by accident - however her name is "Keeper of the Faith" which now seems to rather fit the situation. :o)
Hi halfdiamond and welcome to the forum. Don't worry about the image, it's really striking.
My first reaction on reading the symptoms you describe was please don't immediately attribute them to CLL. Any symptoms that involve a fluttering heartbeat, impaired balance and odema need checking out quickly and before July! We can suffer so many conditions which may be aggravated and affected by but not entirely caused by CLL like atrial fibrillation and kidney disorder. So please mention these things to your doctor and have them checked out. I'm afraid I'd be holding off on alternative therapy until I was sure the essential diagnostics had been carried out especially as some complementary and alternative therapies can impact on platelet levels and our lymphocytic activity generally.
Your reaction to the enforced limitations are entirely normal and part of the loss and grieving process we go through with a cancer diagnosis. It can be very hard adapting to a changed reality especially during the W&W period.
Sending you very best wishes and hope your move goes well but please ask your physician about the worrying symptoms you've mentioned. They're not routine side effects of CLL.
Newdawn
Thanks so much Newdawn. My GP is fully aware of the other symptoms and has done all the tests, ie: heart failure, kidney and liver function, sugar, cholesterol, all the usual suspects - surprisingly and happily all are normal. I guess it's wait and see time. Abdominal ultra sound scheduled for later this month. If anyone knows how low platelets can go before I should be concerned, I would appreciate the information. Can't seem to find it online. Thanks for your good wishes. We all need support. Another challenge for me being without any family or friends in a new environment. Just need to 'rock on'. halfdiamond
I'm relieved to hear you've had those issues checked out halfdiamond (why not the full carat? Lol).
Hope the 'abnormal ultrasound' yields results. Is there a possibility your spleen is enlarged? Might explain the platelet drop.
We certainly do all need the support of each other so consider yourself amongst friends here.
Newdawn
Thank you again Newdawn. 1/2 carat because 'halfdiamond' symbol is part of our ranch brand. The last ultra sound I had in Mexico, my spleen was 'moderately enlarged' - so I suspect this has something to do with it. Have you had issues with your spleen - what can be done besides removal? Thanks for your welcome and support -- ditto. halfdiamond
Yes my spleen is slightly enlarged and I became aware of it with a nagging pain like a stitch in my left side though many people don't suffer pain in the early stages of enlargement. It hasn't impacted massively on my platelet levels yet fortunately.
I could give you no better information than this link to Chaya Venkat's excellent explanation on all things spleen related. An old piece but still very relevant.
updates.clltopics.org/706-e...
Regards,
Newdawn
Again, many thanks. I'll have a read.
I suspected that the pain in the lower left side was spleen, and now I know. It comes and goes and halfdiamond other symptoms are - for me - caused by stress, so it's been a major learning curve to adapt my responses to stressful situations, get as much information as I can (by-passes negative imagination) and begin to simplify life. However depending on the type/cause of CLL the results of treatment can be positive. If you can donate samples via your consultant to CLL research projects, with their assistance you may get more detailed information back.
Halfdiamond,
Platelets around 50k usually the doctor considers serious. 90 is low but ok.
Jeff
Thanks, Jeff.
Under the 2008 CLL Guidelines a platelet count falling below 100K is an indication to start pretreatment discussions and assess absolute lymphocyte count (ALC) and what are known as B symptoms. Platelets by themselves are not a reason to treat necessarily.
Guidelines
bloodjournal.org/content/bl...
If you tell me your city in Canada I may be able to suggest a doctor versed in CLL. Also, there may be a lag time on provincial coverage of healthcare if you have been out of country, it is something you need to investigate further...
~chris
Thanks Chris. I've been back long enough to be totally covered. I'm in Duncan, BC and have been referred to a specialist here (Dr. Pewarchuk). Perhaps you know someone else.
No sorry, not in Duncan, I was treated at BCCA in Vancouver and in Burnaby, there are few CLL doctors there...
wow, small world, and our island is even smaller! I was diagnosed Feb 2015 and my GPsent me to Dr Pewarchuk. I've only seen him twice and have been wondering how many CLL patients he sees in his practice. Now I know that there are at least the two of us.
yes, it is a small world. May I ask if you are happy with Dr. Pewarchuk? Obviously, we are neighbours. :o)
Honestly, I don't know. He was kind and thorough, and sent me for FISH and flow testing which I appreciated. At the follow-up visit he explained that I have 13q and low numbers and he said he was comfortable with my GP keeping an eye on things until I needed him, which hopefully would not be for a long time. All good news to be sure. But I worry. And then I think maybe the GP is missing something or doesn't know about something. And then I wonder if Pewarchuk has much experience with CLL. Pewarchuk is probably great, but I am feeling very insecure and vulnerable. I am sorry that you are dealing with CLL and had to leave your beloved Mexico but I was glad to see that you had been to see Pewarchuk. If you go on to see a CLL specialist I would be very interested in how that goes for you.
Thanks for the reply. May I ask what 13q stands for? I'm so ignorant about all these numbers -- and I don't know what a FISH test is either. I haven't seen Pewarchuk as yet - it has taken me two months to get an appointment. Won't see him until the end of July. My numbers have changed a lot since I first had tests in Mexico - so the sooner I find out what's going on the better. As far as I am aware there is no CLL specialist in Duncan - we would have to go to Victoria or Nanaimo - is that correct as far as you know? Appreciate your thoughts.
I would go to BCCA in Vancouver for a second opinion at some point... perhaps before treatment, which is very common...hopefully in 20 years 😜
Here is a recent patient guide for CLL patients, it is U.S. based so somethings may not apply in B.C., but the science in fine.
Unfortunately I think we would have to go to Vancouver for a CLL specialist. But you have found the best site ever to have all your questions answered. I too am pretty new to all of this and just learning, but this site has been invaluable. And Pewarchuk will have those tests done I am sure. Then with that better information about your particular CLL you will have more of an idea of how things may progress. Here is my email if you want to talk more: siemensfamily@hotmail.com
Thanks so much. I'll just send you an email so we can be in contact.
I have been doing alot of homeopathy treatments, A few of us on here do. You can read my post then see if anything intrest you, do your research...I always have the doc check my Vit -D, and B-12.. both of these can cause problems..
If you are gaining any benefit from homeopathy, I'd suggest it would be due to the placebo effect rather than the homeopathy preparation, which should be just water (and whatever impurities are present in the water used to make the preparation). Water is an amazing chemical and there's still much we have to learn about it. I can highly recommend H2O: A Biography of Water by Philip Ball amazon.com/H2O-Biography-Wa...
More posts on homeopathy can be found here:
healthunlocked.com/search/h...
Neil
Hi Goneblonder,
I'm wondering if you were using the term homeopathy in a general sense, to cover the whole field of complementary and alternative treatments and supplements? I don't remember you saying anything before, about using specific homeopathic treatments that use very diluted substances, like Neil was referring to. But I may have missed something...
best wishes,
Paula
P.S. I think that strictly speaking, the term homeopathy just refers to the use of extremely diluted things, and is very different to the wide range of things used in complementary therapies. I'm not wanting to be pedantic but am trying to help avoid misunderstandings.
ok..take out the word homeopathy..i'll go with natural treatments...and Im not asking any of you to believe in anything....this person asked if anyone was doing natural things...I am..I don't care what slows it or fights it, I don't care if if some say this is a placebo effect...my doctor don't belive either...but he can't explain the fact that I am not progressing..so even he says "for gods sake don't stop doing what your doing...today my cholesterol test came back at 261...thats high, but it has run over 300 since 1994 becasue I cant take the meds for it..I tried...didn't help, make me weak.. the only difference now from 3 months ago is I learned about taking sulfur...and I choked it down 2x per day...
Yes, natural treatments is a much better way of putting it. May I ask what you are going? You may leave a private message on my page if you wish. thanks.
Your body sees everything as a chemical, natural or unnatural... makes no difference.. what matters is which chemicals...
Thanks Cllcanada
Thanks, Neil.
I'm not a believer in homeopathy. But I do believe in vegetables and reduced sugar, bread and pasta where possible. Eat well. As for your illness I do believe with treatments for cll today you will get your life back soon!! Get help and give your worries to your cll doctor.
Thank you for your reply Corin850. May I ask why bread and pasta. As these foods are starchy - would they not turn into sugar and feed the cancer? I have cut out sugar completely except for a small amount raw local honey. I certainly agree with you regarding veges.
Well done dropping sugar from your diet other than the small amount of sugar in honey. While you can probably get away with eating raw honey if your immunity isn't too badly affected by CLL, you may need to switch to pasteurised honey if your immunity worsens, because honey also contains bacteria (which the sugars in the honey inhibit from growing until you eat the honey).
Incidentally the myth that sugar (and carbohydrates) feed cancer is one of the top two myths about cancer - the other is regarding trying to make your body alkaline. See this consensus document from Dietitian/Nutritionists from the Nutrition Education Materials Online; Queensland Health: health.qld.gov.au/nutrition...
There are good reasons to reduce the amount of sugar in your diet - but slowing cancer progression isn't one of them!
For more on these and 8 more cancer myths:
scienceblog.cancerresearchu...
Neil
Thanks for this Neil and very interesting myth debunker. Going to read again later.
Sue
Interesting article, Neil. Thanks.
I have a feeling Corin meant reducing sugar, bread and pasta where possible halfdiamond rather than encouraging them.
I don't believe the sugar feeding cancer myth either but I do believe sugar and the glucose created by a diet high in simple carbohydrates creates systemic inflammation which is bad for our CLL. I've certainly felt better since massively reducing carbs and choosing more complex carbs in my diet.
Newdawn
Would totally agree with you on that, Newdawn.
Welcome half diamond to the site. lCould you not get an earlier appointment, end of July seems a long way off .
Keep us informed as to how it goes.
Best wishes.
Sue
Seems to be a long wait here. I got this appointment a month ago! In the meantime I see my GP - however I will be very grateful to see the specialist. Thanks Sue.
I think its natural to feel anger, nobody likes restrictions. I have learned though not to blame everything on the CLL as I did initially, Also, for some of us,slowing down and looking after ourselves properly is not an option. I've tried to eat more healthily and occasionally put myself first but life gets in the way! 😀😀
Yes, life can have a habit of doing that. Thanks Peggy.
Welcome to the group, Halfdiamond. Had to tell you that I love your painting. Such vibrant colours... Maybe when you post things in future, you can share more of your paintings?
Wishing you well,
Paula
P.S. Looking forward to hearing more from you in future. I completely identify with the fatigue... I have to fight angry feelings that rise in me sometimes, when there is so much to do but I have no energy... Like right now, when I need to sleep, if I'm going to function this evening...
Hi Paula. Thank you regarding my art. I really don't think this is the place to exhibit it though - wouldn't feel right. I have a very outdated collection on fineartamerica.com, facebook.com/halfdiamond/ (my business page on FB) and some on my blog dorothydonnaparker.com/. I've been feeling so rotten I'm not painting at the moment.
So sorry you too are experiencing fatigue -- seems to be so very common with cll ... and so very annoying. Thanks for your reply.
I sent you a message on facebook
I've really enjoyed looking at your site, Halfdiamond. Such striking paintings, with a very distinctive style! 
I see you're asking about FISH tests. They are prognostic markers, that can indicate which treatments might work best for us. But it's still a new science that is developing all the time. Hopefully someone more knowledgeable than me will reply to you about that!
Thanks PaulaS -- on both counts. :o)
Hi Halfdiamond, your painting is beautiful! Please share more of them. I also have lots of fatigue and sometimes feel frustration, resentment, and depression at not being able to do what I was doing before. I think we all choose to have certain experiences before we come into a lifetime, so I try to learn from it. Hopefully we will gain wisdom to take with us when we leave this planet. Not sure why I am in such a philosophical mood, except that your painting is resonating with me.
Best wishes on your journey,
Maxine
Oh, thanks so much re my painting, Maxine. She carries with her such a story. If you look at the post above there are some links to my art. I don't think this is the proper place to be posting them. I agree with your belief that we choose our lessons -- I'm just not as happy about this one ... :o). Need to get back in my studio - the best thing for me to do is follow my heart and my passion. Thanks for your reply. halfdiamond
I followed your link to your FB page. Really enjoyed seeing your work - just beautiful! Thanks so much.
How lovely of you mgh348. Thank you.
Joannmarie ... I cannot find the message you left me regarding using my painting on your place. Please do ... I would be delighted. If there is anywhere I can contact you privately, I would love to share her story with you.
I agree with an earlier poster you need a FISH test to get a better idea of your CLL. Some never need treatment others are more serious. For example I am 44 and 11q and my treatment started right away.
Thanks Mnance. I still don't understand what a FISH test tells you. Thanks
A FISH panel looks at your chromosomes at 6 or 8 locations for genetic damage. It can be a deletion or an addition or a translocation... From this you can be grouped prognostically, into low, intermediate or higher risk CLL.
Unfortunately, new research indicates that FISH results can change over time, and you can pick up other genetic damage...so yearly FISH tests, common in the U.S. are now being moved closer to treatment...
~chris
Thanks Chris. The more information I have and understand before I see the specialist the better -- then I am able to ask intelligent questions.
BC currently has a research programme and database, and they are doing some Familial CLL research and collecting data like FISH results...
Read the patient guide I posted, it is all explained there...
Also check out my website CLL CANADA, there is some Canadian specific sources on the home page, below the irises.
Thanks so much Cllcanada.
Hi half diamond. I am in Victoria BC and see Dr Donna Cuthbert for my CLL. She saw me within two weeks after my GP saw my increased lymphocytes ( 65,000 ) as she doesn't like to keep patients waiting. She ran every test under the rainbow and very thorough. Although not a CLL specialist, very knowledgable, and also an hematology oncologist. A bit brusque at first, but we get along very well now, and she will take the time to explain things. You may wish to see if you can get a referral as you can drive down. Best to you.
Sandybeaches
Thanks for the info Sandybeaches.
Love your art, I just liked you on facebook.
Thanks sallylou. Lovely of you.
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