Hello everyone. I was diagnosed with CLL in March 2019, after falling ill in January 2019. I was admitted to hospital for 5 nights with intense pain in my right groin, which later turned out to be caused by enlarged lymph nodes. I'm currently on 'Watch and Wait', and the pain in my groin has eased off almost completely. At one point I was waking up throughout the night with the pain, but now I sleep right through without pain killers. I've found that homeopathy (along with Bowen technique sessoins) has helped me enormously, particularly with my emotional/mental state. Whilst CLL is always in the background, I generally feel very positive about things, whereas before starting homeopathic treatment, this wasn't always the case. Positive thoughts to all fellow CLL patients, Jackie
Hello - new here: Hello everyone. I was... - CLL Support
Hello - new here
Hi Jackie,
And welcome ! All my enlarged lymph nodes were in my neck so I looked like a chipmunk ! Must have been very uncomfortable in the groin.
Totally agree with the positive thoughts ! The cheapest medicine going, and the best.
Hope you will be on watch and wait for many years.
Regards
Colette
I have been on watch and wait since 2001,just had check up,and the results are good,not any medication for CLL.
Have worked out myself that less sugar is the answer and keep moving.
Blood test are important,I try and not overdo the carbs and sugars,and wine.
Fill up on green vegetables,I can miss out on bread Pasta and rice most days.
Just try and balance every day life.
Still cheat a bit on eating out,but try to make correct choices ,without being a bore
Carole ,
with respect I doubt very much if less sugar was the answer ! It may have helped you ? But if so there would be a lot of Haematologists out of work. CLL is a very complicated disease.
Colette
Well no harm in trying! Mine was to help with diabetics type 2.it didn’t change my diabetes but it put my blood readings in range for CLL.Dont knock it until you try ,every one is different .
Exactly my point your diet was because of diabetes not CLL.
So why did it put my CLl in range and not affect my diabetes!
I think there is always a health benefit to reducing sugar from our diet along with the processed foods it is found in. Good for you Carole.
Without being privy to your history of CLL related blood tests, it's impossible to provide any suggestions as to why your "CLL became in range". There are so many factors at play. It's also important to bear in mind that blood tests are just the easiest part of measuring how our CLL is doing. Finding out what's happening with our internal nodes and spleen, etc, is a considerably more difficult, but that shouldn't deter us from improving our fitness and nutrition.
Please let us know how you go with your specialist appointment this month - I hope you have a good report.
I had fcr in 2010 and there were no obvious lymph nodes. My wbc had gone up but it was the ct scan that showed my spleen and internal nodes from neck to groin were enlarged, that triggered treatment. I have a healthy diet but I admit I have a sweet tooth.
Not everyone with cll has a sweet tooth though. Id like to get rid of mine but I have no will power.
None of my blood test were out of range ,this month May,can only put it down to diet.
Cutting down on sugar carbs and preservatives
Going to try gluten free now as I’m having bloating problems
I say don’t knock anything until you have tried it
If it works that’s good
That's great news that your blood counts are all in range.
If you re-read my reply above, you'll note that I explained that look counts only measure part of your tumour burden. Further, blood counts do jump around a fair bit, which is why we track trends. I hope your trends are good too, but do bear in mind that CLL specialists don't have a high expectation that dietary changes are likely to have much of an influence on the course of CLL and for good reasons.
Neil
As it has worked I’m not complaining
Great to read what you are doing and the results you’ve had. Everyone would likely benefit in some positive way to making similar changes. Thanks for sharing!
Carole..I totally agree with you! The less sugar the better for all of our dis-eases...... certainly not doing any harm except I love my desserts,wine,candy etc just cut back Have great day!
I also like my desert.I always have sugar free jelly,Greek Yogurt and mixed berries or any fresh fruit for that must have taste, also dark chocolate
My Chinese Doctor said no sugar - it feeds the cancer cells
Yup alot of drs. Etc agree
Here’s where the myth that sugar fuels cancer was born: if cancer cells need lots of glucose, then cutting sugar out of our diet must help stop cancer growing, and could even stop it developing in the first place. Unfortunately, it’s not that simple. All our healthy cells need glucose too, and there’s no way of telling our bodies to let healthy cells have the glucose they need, but not give it to cancer cells.
scienceblog.cancerresearchu...
Shorter version:
Anything is worth a try Diet is important for all problems
Anything is worth a try
Welcome to our community Jackie!
It's great that you have recovered from such a painful introduction to your CLL diagnosis. Painful swollen lymph nodes can be very hard to live with, but it is rare that they require hospitalisation. Great that the Bowen massage helped. Generally with CLL, we are cautioned about only having massages from those trained to work with cancer patients, but Bowen massage is gentle.
With regard to homeopathy, there is absolutely no scientific evidence for traditional homeopathic remedies, which is why the NHS no longer supports their use. (A true homeopathic remedy is just pure water, with a supposed 'memory' of some other substance). Homeopathy is such a well known term however, that there is still a considerable market for 'homeopathic' treatment. If you look more closely into what you are receiving, there is generally some ingredient that has solid medical scientific evidence of effectiveness for one or more of the ingredients. You should be able to purchase product(s) from a chemist shop with the active ingredients at a far lower price - but I don't know what that would be to shrink nodes.
Neil
Yes I had good report nothing out of range of importants, 2nd time it’s happened when I reduced sugars and carbs.
Have been diagnosed since 2001 when I was on a research programme I was 51 at the time I started on research for HRT I was placebo .im 81 now Have to go out now chat later to anyone having ? On my experience
Looking to do another research project
Hello JackieMcC
Positive thoughts help everything. When first diagnosed with CLL, my doctor told me positive thoughts are 90% of the travels with CLL. He is right. Blessings.
Welcome to the forum, sorry about your condition but you will find this forum very helpful.
I have Bowen therapy for bone pain & am amazed how well it works for me.
Good luck with everything, you will find great support & many questions are answered here.
Hey Jackie good luck and hope you will feel better! It is hard not to think about having cll. I try not to but I have good days and bad ugh. I am trying to be brave. I had huge lymph node on my shoulder and driving was awful i was in pain all on that side ugh. I started treatment and now my nodes has disappeared thank goodness. I called myself hatchback of Notre dame ha got to have humor to get through this sometimes.
Brenda Sue
Welcome. I’ve had a CLL diagnosis a year ago and also on wait and watch. I too am on a homeopathic remedy. I’m taking rattlesnake venom what about you? I’m doing lots of yoga and eating really well. I also use a chi machine and Beamer. I wish you well.
Snake venom has been investigated for activity against cancer cells but not leukaemia:
ncbi.nlm.nih.gov/pmc/articl... If you are taking it as a true homeopathic remedy, there will be no actual snake venom present in the remedy, just water with a supposed memory of the snake venom - again disproven pseudoscience.
With regard to the Bemer, "Several systematic reviews of electromagnetic therapy have shown that it is not useful and falls into the category of pseudoscience"
en.wikipedia.org/wiki/BEMER...
Your Chi machine may improve blood circulation and possibly reduce lymphedema, which can be a problem with solid cancers, but I couldn't find any reputable reference regarding its use with leukaemia:
'In June 2000, HTE contracted with Flinders University in Adelaide, South Australia to conduct clinical trials focusing on secondary lymphedema and venous oedema of the legs. Results showed a reduction in test subjects' weight an average of 1.45 kg (approx 3 lbs) in 3 weeks.[3][unreliable medical source?]. The results showed that "After a three week treatment period there were statistically significant reductions in total leg volume and fluids, whole body extracellular fluid, weight and subjective leg symptoms." '
Thank you for all your messages; this is a great forum. Just to say that I don’t actually know which homeopathic remedy I’m taking! That might seem strange, butI don’t want my mind to be influenced by any pre-existing knowledge of the various remedies. I also take flower essences (provided by my homeopath), and again, I deliberately don’t wish to know what it is I’m taking! Not for everyone, but that’s the way I prefer it! I’ve read with interest about cutting down sugar and carbs; I too have a sweet tooth - chocolate mainly! - but I’m trying hard to limit this. I drink a mug of warm water with the juice from half a freshly squeezed lemon in it, plus some ground turmeric sprinkled in it, first thing each morning. To try and avoid any damage to my tooth enamel, I drink it through a straw. For me, it just helps to be doing positive things, irrespective of whether or not there is any concrete scientific evidence. Wishing you all the very best of luck on your CLL journeys. Jackie
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