CLL Support Association
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Newly diagnosed

Just diagnosed, which was a surprise since I have no family history of cancer and lead a healthy life, but I served in an infantry unit with in Vietnam so agent orange exposure was the likely catalyst. Was diagnosed thru a local hemotolgist through flow cytometry test , said would get sick sometime in the future, and to come back in 6 months. Wanted more insight than what he provided into my prognosis and went to Mayo in Rochester for a second opinion, and I am very happy I did. Got favorable results on the Fish test, had mutated IgVH genes, and had low B2M and CD 38 values, and all these tests put me solidly in the low risk bucket. Plus my physician was a CLL specialist who patiently answered all my questions. My goal is to delay time to treatment so increased my intake of matcha green tea through a morning smoothie and tea in the afternoon, along with my exercise routine of weights, yoga, and spinning classes.

Am over the shock of the diagnosis, and am thankful for my Mayo MD and what I learned about my prognosis with their specialized testing.

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Welcome to our community. 🙂

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Hi Tommy

Sorry that you have been diagnosed with CLL, but happy that you have found our community.

Take your time and browse through the site, and I hope that you make good use of the goodwill of the members on here if anything is bothering you ... there are NO stupid questions, only good people who are more than willing to help.

I was diagnosed with CLL stage 0 aged 47 in 2006, and have not as yet needed treatment. ... my experience was of being checked every three months for a couple of years, then it became every six months, and now every year. Others on the site have reported the same pattern.

There is a lot of experience and goodwill on this site, I hope that you make good use of it, if you are unsure about anything just ask, you will not be ignored, you are not alone with your CLL.

ygtgo.

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Welcome Tommy! Sounds like you have gotten yourself connected with a CLL specialist right off the bat, which is great. That will make a big difference down the road.

kim

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Welcome to the group. Sounds like you have your act together and hope you enjoy learning with us as we roll along on the CLL train. We also share frustrations, happy moments and support each other. Join in as the spirit moves you.

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Hi tommy 777 I also put my cll down to infantry service Vietnam 1970

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brad8, I occasionally send emails to those who are AO exposed. If you desire to be included, please send me a note.

Dennis, 70, Ibrutinib, Navy Diver in VN '71-'72

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Hi Tommy777,

A warm welcome to our community. Like everyone else here I’m sure you’d prefer not to be here, but welcome anyway.

From reading your post it looks like you’ve quickly got a good handle on where you are. However, this is a good place to be as there are many people here with much firsthand experience of living with CLL. Diagnosed in 2012 I see myself as almost a newcomer compared with some people’s experience.

Be cautious of Dr. Google, whilst there are excellent sites out there on the internet there are also some highly dubious ones masquerading as experts. Here you’ll find many people with first hand experience, but for medical advice always use your local support team.

best,rob

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Hello Tommy777,

My husband also has service connected (Vietnam) CLL / SLL. He was diagnosed 11 years ago. I’m glad you found expert help early, and this very helpful group.

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Hi thomelk,

Thanks for your message, and assume your husband Is connected with an excellent physician resource. I have a good physician, but am getting mixed messages from the VA about service connected disability claim. Know your husband was diagnosed 11 years ago, but do you or your husband recall how the VA assigns disability levels for an early stage CLL patient like myself?

Thanks,

Tom

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Hi Tommy,

Welcome to the club nobody wants to be in. This is a great place to get informed and accurate info due to the knowledge and efforts of HU administrators and volunteers like Chris Dwyer.

Your experience as you have reported it is a perfect match to my own. I can only hope your profile matches with indolent disease going forward. Mine did not so my advice to all newly diagnosed patients is to be sensitive and alert to what your body and disease is telling you.

You were smarter than I in going early on to an academic Center (Mayo Clinic) that specializes in CLL and are luckier to have better options if and when treatment is ever required. Hopefully you may avoid treatment for many years but as you are aware from your service it is critical to keep your guard up. CLL is a persistent and smart an enemy as one can find and not to be underestimated.

I am assuming you have taken steps to be evaluated by the VA for compensation?. Given the time lapse since your service in Nam it is good get any documents in order first and to get sponsorship through a local veterans support office. Some vets have had problems with the bureaucracy.

WWW - 13q-, IGHV mutated 6%, CD38- but with aggressive CLL needed TX in 2 years after diagnosis. Failed FR & HDRTX last 6yrs & 6months on Ibrutinib doing great.

PS - This is a perfect time to put in a plug for the best patient oriented CLL focussed Conference in North America if not the World "CLL LIVE 2018". It is sponsored by my Canadian friends and neighbors CLLPAG - here is the link for details. cllpag.ca/

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Hi WWW,

Thanks for your informative messag e-I will see if I can attend the Canada meeting in April.

I did an application for a VA service connected disability on December 7 and as you know the process is painfully slow and I make not get a decisions until June. From what I have learned, people in Rai stage 1 with the diagnosis but no active symptoms may get 0% compensable, which acknowledges a service connectection but no compensation until you hit Rai stage 1 with symptoms and treatment. I send in all my medical records and tests and also got an agent orange registry exam at a local VA hospital.

Welcome your insights and experiences with the VA

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Tommy,

Following this intro is a VA website copy for presumed Agent Orange caused conditions and you will note that there is no symptom criteria related to the condition of diagnosed CLL to be eligible for compensation. Knowing the VA from my and other vet experiences there might be a grey-area technicality for which a vet might be denied and for which I cannot answer at this time. Be aware of the definition separating CLL from MBL. MBL or Monoclonal B-Lymphocytosis defined below, is considered a separate condition of lymphocytosis that often never progresses to the definition level of CLL yet the MBL cells look and quack like CLL ducks. You give no details for your diagnosis and if the Mayo Clinic calls your diagnosis CLL you should be in the clear – just be aware of that distinction when dealing with your local VA eligibility processing.

The VA like all institutions contain some good people and some who are pretty lame. I got very lucky with the doctor who conducted my eligibility medical exam. She was smart and efficient unlike the marine Doc who took her place when she left. My exam, done in 2006, was extensive and comprehensive in that it covered not only CLL but HIV, Hep-C and other conditions.

My claim of being in Nam during the inclusion time period was doubted by the VA bureaucrat in charge of that part of the eligibility process until I produced my military passport with in and out country stamps. I was an advisor in the early part of that fiasco. You may not have this problem but I distinctly got the impression they were looking for excuses to deny my claim as opposed to preforming due diligence.

Even after my diagnosis and in-country verification was accepted I had to enlist the aid of local veterans support to keep the ball rolling. Dead soldiers through attrition are not in need of compensation;-)

My local VA did not handle oncology cases and I was referred to the Buffalo NY VA where I specified the Oncologist I wished to consult. I was palmed off to a young doctor appallingly ignorant of CLL whose main function was to get me into an un-needed CT scanner. The facility was filthy and I soon ended the session fearing for any unwary CLL vet who might be seeking help there. I don’t want to paint all VA facilities or VA oncologists with a single brush but I haven’t been to a VA facility since.

Good luck in a new year and new era of CLL treatments should you ever need it.

WWW

From the VA - Veterans Exposed to Agent Orange and Other Herbicides

"A Veteran who served in the Republic of Vietnam between Jan. 9,1962, and May 7, 1975, is presumed to have been exposed to Agent Orange and other herbicides used in support of military operations."

"VA presumes the following diseases to be service-connected for such exposed Veterans: AL amyloidosis, chloracne or other acneform disease similar to chloracne, porphyria cutanea tarda, soft-tissue sarcoma (other than osteosarcoma, chondrosarcoma, Kaposi’s sarcoma or mesothelioma), Hodgkin’s disease, multiple myeloma, respiratory cancers (lung, bronchus, larynx, trachea), non-Hodgkin’s lymphoma, prostate cancer, acute and sub-acute peripheral neuropathy, diabetes mellitus (Type 2), all chronic B-cell leukemias (including, but not limited to, hairy-cell leukemia and chronic lymphocytic leukemia), Parkinson’s disease, and ischemic heart disease."

Presumption of compensated medical conditions defined

benefits.va.gov/BENEFITS/fa...

Monoclonal B-Cell Lymphocytosis

ncbi.nlm.nih.gov/pmc/articl...

From The American Cancer Society

“…. For someone to have CLL, there must be at least 5,000 of these cells (per mm3) in the blood.” Note: A patient veteran can be diagnosed with the lymphoma version of CLL and be VA compensated. SLL (Small Lymphocytic Lymphoma) is the same disease as CLL only manifesting in the lymph tissue and may not be detectable in the peripheral blood. Usually a patient will end up expressing the B-cell cancer in both the lymph tissue and the peripheral blood. These distinctions have confused many a patient.

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Thanks, WWW. I saw that list of diseases on the VA agent orange website, and initially assumed from that list that the CLL I was diagnosed with would result in eventual approval of a service connected disability with monthly compensation. But have read elsewhere that they may treat early cases of CLL differently since Rai Stage 0 is largely symptom free requiring no treatment, and is therefore in the eyes of the VA not eligible for service related compensation. Heard of one guy with CLL from Nam who was classified as 0% compensable, meaning VA acknowledged the CLL was service related but the vet would not be paid any benefit $ until he got sick and needed treatment e.g Rai Stage 1 or 2.

Am happy at this moment to have my health and not needing treatment at this time, but as you said the disease has a mind of its own and I could need treatment in the near future. It would be nice after all I have been through, especially in Nam and now getting the CLL diagnosis, to get VA compensation but I will need to wait for the application process to play out.

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Hi Tommy 777 Welcome to the family. A great source of information & support.

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Congratulations for taking matters into your own hands! Best wishes.

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Thanks. I got so little feedback and insight from the local hematologist, plus I realized I have only one life to lead and for a disease like CLL/cancer you want to best because your life truly d pends on the best medical care you can, even if you have to spend $ and travel several hours to get it.

Tommy

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Welcome Tommy. This group is so welcoming and knowledgeable that they will be able to help you with any questions you have or at the very least point you in the right direction to find out. Nobody wants to be here but as a group there couldn't be a better one!

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N of 1 is a good book to get.

Cll society web site is very good too.

30 % of people never need treatment.

Be well.

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Thanks, Hoffy. I requested the n of 1 book from my local library.

Was interested in your comment that 30% of people with CLL never need treatment. Do you know the source of that statistic?

Thanks,

Tom

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Tommy,

From CLL Society web site:

Be Well,

Hoffy

cllsociety.org/questions-an...

Treatment

Why shouldn’t I start treatment immediately, now that I have been diagnosed with CLL? Don’t I want to kill as many cancer cells as I can NOW, before there are more of them?

All cancer treatments have some toxicity, and CLL patients often go many years, even decades, before actually needing to be treated for their CLL. In fact, some 30 % of CLL patients NEVER need treatment. So it is best to avoid possible adverse effects of treatment until the CLL patient clearly needs to be treated. Moreover, early treatment with one therapy (chlorambucil) has been shown to actually worsen outcomes. No early intervention has yet been shown to improve survival.

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Tommy, I occasionally send out information that applies only to us Vietnam Veterans. If you want to be included, please provide me your email address.

Dennis, 70, Ibrutinib, Navy Diver n VN '71-'72

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Thanks, Dennis. Yes, please add me to the list. I was a medic in Nam in 68-69 .

I just applied on 12-8 for a service connected disability, and assume I will need to wait 3-4 month for the VA decision. Since I was just diagnosed in early December, I am still in Rai Stage 0 with no symptoms. I was told the VA may rate me as 0%, which would be service related but no compensation. Do you have any insight into how the VA processes early stage CLL claims for service connected?

Thanks,

Tom

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Would help if I sent you my email address

Email address deleted by Admin to protect your privacy. Please use the Private Messaging facility to exchange personal information:

support.healthunlocked.com/...

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Hi Tommy and welcome to the best group of people you could find. We all share the same problem and any questions you have, someone on here will have the answer or insight to guide you in the right direction. I found this forum by mistake (somehow) and so happy I did. I also found my CLL specialist through this site. Hoping that your CLL will remain in the low range for a long time. Come back often as there's always something new to read. Again, welcome. Carole

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