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CLL Support Association
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Needing advice and support

Hello everyone! My husband was diagnosed with CLL in 2006. He has remained pretty healthy up until the last year or so when he started showing more symptoms (enlarged lymph nodes, fatigue, some night sweats, ulcers in the mouth, weight loss - though this could also be due to his diet). His last blood results showed significant changes and now the doctors are recommending chemo. We have never wanted to go the conventional way so we are going for alternative healing methods as we have seen wonderful results in many of our friends who have had cancer and got rid of it with a raw diet etc. However, it seems to be harder to get there for CLL. I have read of 3-4 cases online who have healed their CLL naturally so that is encouraging. Is there anyone here who has gone the natural way and had good results?

My husbands results were the following: Platelets 117x10e9/L, WBC 64.6, lymphocites 58.8.

My husband has been going for IV vitamin c once a week (can't really afford more than that), we juice regularly, he takes barley green and various supplements plus he is on a mainly raw vegan diet since about 2 months ago.

We are going to see if there have been any changes with the next blood test but at the moment his lymph nodes in the neck are up and down. It is so hard to watch my loved one go through this! It feels like a roller coaster sometimes.

We have 8 children aged 7mths up to 15years and my husband is self-employed so we are not sure what to do about the business. Whether to keep going or sell it as we don't know how he will progress....

24 Replies
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Welcome to our community to you and your husband.

Here are a few pinned posts that you may both find particularly helpful while you wait for others to respond:

healthunlocked.com/cllsuppo...

healthunlocked.com/cllsuppo... (Includes reference to a discussion on vitamin C therapy)

and healthunlocked.com/cllsuppo...

Neil

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Hi Misspitifour

I’m all for the natural healing route over conventional medicines but with Cll being so complex and unpredictable I would advise in this instance to take the unwanted route. That being said continuing the healthy dietary changes will still benefit your partner in the long run.

I definitely wanted to avoid the old fashioned chemo route and was fortunate enough to be enrolled in a trial in the U.K. with one of the less harmful targeted therapies.

I’m not sure what country your in but certain hospitals hold trials you maybe eligible to sign up for depending on your husbands disease genetics.

Stuart

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I’d urge you to consider alternatives but of the traditional kind misspitifour. By all means use a supporting healthy diet but not as a treatment strategy. There’s so much misleading information out there offering unrealistic alternatives and frankly it can be dangerous for CLL.

Don’t give up on his business or his options because he could have the chemo and be back working and living normally. I’m hoping to do so after mine.

Wishing you the very best,

Newdawn

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Good luck Newdawn ...... wishing you an easy time and a quick recovery!!

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Do you if he has had a FISH test and an IGHV mutation test? If a person is IGHV mutated, chemotherapy can produce long remission times. I went through 6 months of chemotherapy over a year ago and did fine with so far great results. Whatever path he takes, I wish him all the best.

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Because my wife's parents, aunts and uncles all died of cancer she adhered to an anti-cancer diet for over 30 years, but she got cancer anyway. She did eventually beat the cancer with chemo, radiation, etc. However 8 years later while still doing the anti-cancer diet so it wouldn't return she got CLL.

We still believe in a healthy diet, but when it comes to CLL it is a whole new animal. CLL is a genetic/chromosome defect with a lost of chromosome information and all the eating of leafy green organic veggies, etc. isn't going to kill a rapidly replicating defective chromosome. Nor will a great diet add new information to a defective chromosome. The newer novel oral CLL treatments kill the defective CLL cells that are over crowding your blood and bone marrow. Thus leaving the healthy ones ample room to reproduce without being over run or pushed aside by the defective ones. (I realize for the more studious and long time readers this is a very simplified explanation) However, once CLL needs treatment it needs it and one should not sit back waiting for the juicing of carrots, green tea drinks, baking soda diets and stuffing ourselves with apricot pits... while the lymph nodes grow intrusive to nerve bundles, the night sweats exhaust and deplete you of electrolytes, etc. You want good results...Imbruvia will begin to shrink your nodules in a week if not in the first two days for most. You want your WBC to drop, venetoclax will drop your WBC dramatically each week and for the majority in about four weeks back to normal No diet we were ever on did that.

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Excellent points Knotagoat. The primary difficulty with trying to cure CLL by any means is that CLL hijacks our immune system in various ways to prevent our immune system from eliminating it. CLL can be considered to have metastasized throughout our entire body and theoretically, just one surviving CLL cell is all that is needed for it to eventually return. Indeed CLL has a reputation of always returning - it is considered an incurable blood cancer. While spontaneous remissions can occur (around 1%), that only appears to occur if we have the right genetics, which includes being IgHV mutated.

misspitifour, you mention "3 - 4 cases online who have healed their CLL naturally". I'm only aware of one documented case and we have thousands of members who can attest to the benefits of proven conventional treatments. Claims of being healed naturally are difficult to prove because CLL is such a heterogeneous illness, both in how we each experience it and how it can vary over time for us. About 30% of us never need treatment, making it difficult to determine in such cases whether dietary intervention had any influence plus claimed cures can be due to spontaneous remissions, which may have occurred anyway.

Why specifically are your husband's doctors recommending treatment? Your husband may have very enlarged nodes (larger than 100mm/4 inches is one trigger for starting treatment), but many of us here remain in watch and wait with similar or worse symptoms than your husband. Given your husband's very long period in watch and wait, it is quite likely that he is IgVH mutated, in which case one 6 month treatment cycle of FCR may give him an indefinite remission or as close to a cure as is currently possible.

Neil

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If you give a few more specifics, like your location, people will be in a better position to discuss your husband's options with you. You might want to do that in a new "locked" post for your privacy and that of those responding (at the very bottom of the post change the setting from everyone to community).

I agree with Newdawn about making major decisions about your husband's business until you learn more about his CLL. It would be a shame to sell the business and then find that your husband has done well with treatment, as many, many do!

I, too, have seen three or four people (over my now 16 years of being involved in CLL groups) claim to have had their CLL cured using natural approaches. If you dig a little deeper you usually discover that either somewhere along the way they have also had some "conventional" treatment or they possibly have an indolent case of CLL and have never had the testing necessary to document a cure. They just are doing well.

Vitamin C is known to ramp up lymphocytes, so I would be very cautious about that. Given the major changes in diet and supplements, be sure to have his vitamin D and B levels checked, especially B12. Vegans usually need to supplement B12. Be sure to consider whether some of your husband's symptoms could be related to the fact that he has made some major changes in diet and supplements. Supplement labels can make unproven claims and they are not tested for content (actual dose and fillers) or contamination. Also consider any prescriptions he is taking for other health issues.

You don't mention what the significant changes in your husband's labs are, or his Hemoglobin level (HGB). Also be sure that any of the counts under WBC are absolutes, not percents. Ignore the percents. The patterns over time are more important than isolated numbers.

It does sound like your husband's symptoms might be a reason for considering treatment. How enlarged are his lymph nodes, and has he had an ultrasound or CT scan to check for those that can't be palpated? They can go up and down, and be very irritating, even painful, without requiring treatment.

You don't mention his HGB or what the significant changes in counts are and how much things have gone up or down. Numbers can bounce and then settle at a new level.

I'm sure this is a very frightening time for both of you, especially considering that you have eight children to think about. Please feel free to come here any time with questions or just to let out the fears and frustrations. There are many of us here who have struggled in the past, but have been able to move forward and are now doing very well. Most of us tell those stories because we don't want them to show up on google, Facebook, etc.

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Thank you so much everyone! It has been helpful to 'talk' about these things. I do think our doctor is rushing us a bit with the chemo. I will talk to my husband about the vitamin c treatment as I am not sure if that is the best thing. He is taking a vitamin d supplement but I have heard it is good to get the IV treatment for vitamin d (for cll) rather than the vitamin c.

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Vitamin D3 supplementing via capsules is all that is necessary to get serum levels into the normal range, where many of us have found this provides a reduction in fatigue. But first check if your husband's serum level is below reference range. There's a possibility that vitamin D could feed CLL (which has been proposed as the reason why it is so often low in CLL patients). We'll hopefully know when Mayo Clinic publish the results of their clinical trial, so until then, it would be prudent for your husband to work with his doctor via blood tests to just ensure his vitamin D level is in the normal range.

One of our members trying IV vitamin C reported no change after paying $10,000 on these infusions: healthunlocked.com/cllsuppo...

Neil

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In 16 years I've never seen anyone even mention vitamin D infusions. My D was very low when first tested. It took about 2 years of D3 pills, with testing every three months, to find the right dose for me. It is now tested about every 6 months, and after 6 years on the same dose, the dose was lowered recently. Our bodies change over time. So do things like our diets.

Be careful about going with I heard somewhere. Work with your husband's doctor. If you aren't comfortable with his advice look for someone else if you can. My first doctor rushed me into treatment. In my case I needed treatment, but I was rushed into the wrong one. It took a major fight with my insurance company to get a referral to someone who really knew CLL.

For a good overview of CLL take a look at cllsociety.org/

There is a good section called The Basics and lots of current information about newer treatments, a list of links to reliable CLL specific resources, and if you are in the US, the option of a second opinion with a CLL specialist on line if you don't have one near you.

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One quick thought...it is really essential to seek treatment from a CLL specialist. Because of CLL's complexities and variability from one person to another, generalist hem/onc docs (whose main practices are focused on solid tumor cancers) are rarely knowledgeable about this disease. I've been reading this forum for over a year now, and it's very common for folks seeing generalists to have chemo suggested right away. Also, there is tremendous research/clinical trials available through major cancer centers. Here are a couple lists of specialists in the USA:

cllsociety.org/toolbox/cll-...

sites.google.com/site/acorc...

Best wishes!

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A second opinion from a good hematologist/oncologist would not hurt. He or she might recommend a clinical trial — one of the advantages of taking part in a clinical trial is that the treatment is free. Or you could get a prescription for ibrutinib, and that could knock back the disease for five years or so. (There is a patient assistance program for Imbruvica which can reduce the cost to $10/month.)

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Arcionquad, do you or anybody else know where I could get more information on the patient assistance program that you speak of for Ibrutinib? I suspect that the program is income based, so I may not qualify but it would be nice to know. I finished chemo 2 1/2 years ago. My oncologist has said that my next step is probably Ibrutinib but not yet. Thanks for the help.

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If you search for "Imbruvica patient assistance program", you will find information about paying for ibrutinib. It is also my understanding that the specialty pharmacies that supply ibrutinib also know how to sign up patients (as do some doctor's offices). The websites for the Leukemia and Lymphoma Society, the CLL Society, and Patient Power also have links and articles about financial help.

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There is a difference between "gross" and "adjusted" income, so depends on which one you decide to submit when you apply. Really is a BIG difference, and the foundations don't specify which one when they ask you. If you can submit the "adjusted"

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Thank you. Very helpful

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PAN - Patient Assistance Network, check them out

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Be sure, if you are looking at trials, that you read all of the fine print about what is covered and what isn't. In the US, some trials will only cover the trial drugs, and some of the trials with the newer combinations won't cover those in the combination that are already FDA approved. Labs, scans, etc. that are considered standard care are not covered in all trials, so you need to be sure that your insurance will cover that part. On the other hand, a few locations will cover travel and some or all of your housing costs while at the trial site.

gte - If your doctor is a specialist he/she should have someone who deals with finding assistance for the newer drugs.

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Thank you for this information.

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I came in late on this post and responses and have nothing to add. However, I would like to say after 2 years of participating in this forum, this was the best example of the benefits this forum can bring to anyone who is reaching out for help. I too am on watch and wait (2 1/2 years), IGVH mutated, no symptoms, changed to a healthy diet. But, I know the chances are very high I will need treatment some day. My hope is the healthy diet will slow the progress of the CLL and give me more time before treatment. Your husband has done very well to delay treatment for 12 years. Best wishes to your husband and yourself in winning the battle with this disease.

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Welcome! What stage of CLL if you know? I have had CLL for 18 years. Now 74 yrs old. Went to the "watch and see" for first three years. Started chemo, them monoclonal chemo, along with IVIG. Maxed out on the conventional chemo, and now on Oral Chemo Embrivica, (Stage IV) for the last three months. Typical night sweats, muscle and bone pain, Peripheral neuropathy in legs, feet, arms and hands, enlarged lymph nodes. Also battling viral congestion in upper chest (for last 10 years) - cant seem to get rid of it, tried lots of meds Dr prescribed. Wife has me on Netural-life supplements, because my appetite changes day to day.

I

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Please consider traditional treatment. I asked about alternative treatments, and I was told by one of the best doctors in the world that they can support a traditional treatment, but not substitute for them. I am also self employed, and I am completely fine after treatment for aggressive CLL (17p deletion, etc.) and my business is better than ever. I only have 1 child. Please consider getting the solution most likely to keep your husband around for your 8 which is probably something like ibrutinib, etc. Maybe not the advice you want to hear, but statistically, the best way to beat this thing and keep the business that supports your family.

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I was diagnosed with NHL in 2008. At some point it turned into CLL but I was doing ok until 2015 when doc said I needed chemo and blood transfusion or I may have either a heart attack or stroke. I had about 5 bags of blood and started on chemo. After only three treatments my doc said no more because my bone marrow has to recuperate. I did well on chemo, my hair thinned a little, didn’t break out with anything. I stayed away from crowds, going to store with mask only. I got better until earlier this year when cancer was being a bully (as my doc said) and she put me on Imbruvica. I think i tolerate it very well, in spite of days when the slightest movements turn into cramps or the adult acne (which has gotten much better). I understand that these days it’s not about eradicating cancer but us living with it as best as possible. I too went through the healthy diet, no sugar, etc. but after a while I got so tired of it all, I couldn’t eat another salad or live on veggies alone. Having said that, I believe a healthy diet is important as well as having a strong sense of not letting cancer run your life. I believe in being prayerful and taking meds that will help me get better or keep cancer in its lane.

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