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CLL Support Association
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Hello from Ali

Hello everyone

I just came to know about this site few days ago. I was diagnosed with CLL in Feb 2017 at the age of 37. Had no visible symptoms, just the routine blood check led to this. My WBC was 23 at that time. My oncologist said that I am fine for the time being and I can eat anything I want and don't need any special medicine.

I was upset to hear that because 3 years ago my daughter had died of ALL at the age of 3. Well fast forward an year ahead today my WBC is still varying between 23k to 25k. I have my CBC every month to monitor the counts.

I have tried the H2O2 protocol for 2 months but I haven't seen any improvement in my immune system. Is there anyone who is using another protocol or who have been in remission without the use of chemotherapy or drugs?

Would love to hear from you guys and know your experiences.

12 Replies
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I just wanted to send sympathy on the tragic loss of your daughter. No parent should have to experience that.

Virginia

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So sorry for your loss, welcome to the CLL friends club.

Hugs and prayers

UK Sparky

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Hi Alpha-b,

I'm so sorry to hear about your daughter, which must have made your CLL diagnosis particularly difficult. I'm so glad you found this site - you'll get a lot of support and so much valuable information is provided, which is very helpful. I'm hoping someone on the forum will be able to provide you the information you are looking for as I would be very interested in knowing as well.

All the best,

D.

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Thank you Mystic. You are right in saying that the support we get on this website is awesome and I am sure that we can continue to support each other through the tough times.

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Hi Ali,

Sorry to hear that you lost your daughter so young to ALL, particularly given it is now largely curable, a far cry from 50 years ago when it was considered incurable. While CLL is not currently considered curable (with the possible exception of perhaps 30% with the right CLL type treated with FCR), we are fast approaching converting it to just another chronic condition that can be managed with minimal to no impact on our life expectancy.

Thank you for sharing your experiences with hydrogen peroxide/H2O2 and how that made no impact on your WBC or your immune system. This topic has been discussed previously here: healthunlocked.com/cllsuppo...

You might find the pinned post on complementary cancer treatments interesting: healthunlocked.com/cllsuppo...

(Incidentally, you should monitor your lymphocyte count for a more accurate assessment of your CLL progression; your WBC count includes other white blood cell types that fluctuate with illnesses and allergies.)

Neil

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Thank you so much, yes I have been keeping an eye on my lymphocyte count as well which is fluctuating between 70 and 76 over the past year

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If your WBC is between 23 and 25, you must be quoting the percentage of your WBC which are lymphocytes, not their absolute value. That would be around 18...

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So sorry to hear about the lost of your daughter at such a early age. My thoughts are with you. J.R.

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Thank you J.R for your thoughts.

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My heart goes out to you, as a mother and wife to husband diagnosed with CLL at a comparatively young age. Sending you all best wishes.

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Yes its very stressing for the wife. I also have two daughters aged 9 and 3. The elder one understands the consequences of cancer as she has seen her younger sister die of it. But I try to keep a normal atmosphere at home. I go to my job as usual, go to gym and play badminton in the evening and try to enjoy the life as much as I can.

My wife has been very supportive to me during this period and it has eased the stress on me. Hope you and your family also enjoy and cherish the time together which you have.

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I am so sorry that you have dealt with the loss of a child. ALL is a very aggressive cancer. The good news is that CLL is considered to be an indolent cancer for many and researchers are making incredible advances in treatment. Try not to compare the two, though I'm sure that's hard at times. Your ALC looks good. Do you have other symptoms - low hemoglobin, low platelets, enlarged lymph nodes or spleen? Keep us posted. There is a lot of support and information here.

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