Official diagnosis

[KellyM]

I posted the other day that it was suspected that I have CLL/SLL. Today I saw my oncologist and he confirmed that diagnosis. I am on watch and wait. He did tell me that I don't have any markers that would suggest my CLL will be aggressive but I also don't have the markers that would suggest I may never need treatment. So, basically, I fall in the middle. It was a very surreal experience; walking into a cancer center; but I must say, I feel a bit better about everything after talking with the doctor. He is referring me to Ohio State University for a consultation since I am younger than the normal CLL patient. He says that they have one of the leading CLL research departments and it happens to only be a few hours from my house. So, for right now, I will choose to live my life just like I did before I knew about this CLL stuff. One thing I am curious about is the Green Tea extract that I've read about. I mentioned it to my doctor and he said it wouldn't hurt anything to try it. Does anyone have experience with the EGCG supplements? Positive or negative?

[Cllcanada Top Poster CURE Hero]

Kelly,

OSU/James and Wexler are world leading CLL centers... you are so fortunate...

Green tea purchased over the counter is not recommended by the doctor who did the original study at the Mayo... because they simply don't know what is in it. Also, most comes from China or India and these tea crops use many banded pesticides...

If you decide to try this, you need your liver functions monitored...

If you search here you will find dozens of threads on this topic.

~chris

[KellyM in reply to Cllcanada]

Thank you, Chris.

[wroxham-gb]

It's an awful lot to take in KellyM. In your own words you feel a bit better after talking to the doctor. It is hard to accept though. Chris has hopefully reassured you about OSU.

I am so sorry you have been diagnosed so young but the hope is you may never need treatment. Take care.

Best wishes.

Sue

[vila]

Kelly,

I'm so sorry your diagnosed was confirmed. I'm sure it's tough for you, but hopefully you'll be OK. We're going through the same thing in our family. My husband was recently diagnosed and he's young as well. We have three young kids.

I hope this gets better with time.

Check out the link below. After watching that today I felt a bit better. Hopefully it helps you too.

patientpower.info/video/ash...

Sorry I'm not being able to paste it as a link, however if you highlight it and right click, it gives you the option to go directly to the site. Still new to this site.

I wish you all the best!!

Vila

[KellyM in reply to vila]

Thank you, Vila. I'm sorry to hear about your husband's diagnosis. I also have a young child. Thank you for the link, I will check that out.

All the best to your family as well!

[BellaBee10 in reply to KellyM]

Really sorry to hear about your diagnosis. I got mine just over two months ago. You sound incredibly brave.

[KellyM in reply to BellaBee10]

Thanks, BellaBee10....I'm not sure about brave...just hopeful and determined. I have a young son that keeps me going and focused, as well as a great support system in my family and friends.

[Hidden]

Kelly,

You have already assured yourself of a successful outcome by getting to OSU. They will do the right thing in treatment. If you have the opportunity, get a young Doctor as you will want to develop a long relationship. I was on watch and wait for two years and then my CLL/SLL became aggressive. I ended up at MD Anderson in total despair and panic. I agree with you that this is a surreal experience. I was put in a Phase 1 Drug Trial (ACP-196). The drug has been a miracle. If this had not worked, MD Anderson was confident that they could find another. The breakthroughs in CLL/SLL treatments have been short of breath taking in the last few years. And because of this, do not forget that your timing is great. Five years ago I would probably be dead or very sick, now CLL/SLL is just a nuisance. With ACP-196 I have gotten back my quality of life. The researchers keep telling me to have patience as they are excited by better treatments in the pipeline.

[SouthFloridaLady in reply to Hidden]

Green blue, so happy to hear that you have good news!

Roslyn

[RK66]

Hi Kelly:

Sorry to hear you have CLL but the rest is good news! I don't necessarily agree that you are in the middle. I think you are way better than that. I have some unfortunate markers. I am Zap 70 and C38 positive and unmutated and they tell me I am in the intermediate risk category. I consider that the middle. I think you will be well for many years and may even avoid treatment. I certainly hope so.

While the diagnosis is unfortunate, your outlook is really good. As the eternal optimist who tries to find the good in things, I hope you can celebrate the good news portion of your diagnosis that you have no bad markers and have a wonderful holiday season with your family. You should consider the no bad markers part of your difficult diagnosis as your Christmas miracle. It could have been so much worse. With all the advancements being made, I think your future is bright.

I am currently taking green tea extract but until my next round of blood tests I won't know if it's helping. I will report back after my next oncology appointment in January. It can't hurt to try.

Regards,

RK6

[Peggy4]

Hi Kelly. Sorry that you've found yourself back here but you are most welcome. You are so very young and that must be extra diffucult. However, you seem to have a supportive family and friends which makes the world of difference. You have found a great source of information and support here too which I know will be a big help. Please let us all know how things go for you . Peggy

[Firefly14]

Hi Kelly,

Thanks for reporting back so quickly, I had been thinking of you. This is a very tough time there's no denying it. And being young makes us more unusual in the CLL category. However, it also means we are lucky enough to get daily hugs from a little person who knows nothing of our new label and for me, cuddles from my sons are the most precious thing and keep me sane and happy when I feel sad or upset about my diagnosis. Do stay in touch as we have lots in common. Great news that you have access to such a leading CLL centre, you will get the very best of care there. Watch and wait is a "headwrecker" as we say here in Dublin, definitely a tricky one to explain to people let alone live with. But hopefully we will be able to live our lives more or less as we were before. If you are someone (as I am) who wants to do something proactive while in watch and wait, it's a good time to get in more exercise and green leafy veg. I feel (and according to my mother, also look!) better since I've cleaned up my diet, something you may wish to explore if/when you feel ready. But for now, it's ok to feel shocked, upset, down, etc etc as this new world starts to sink in. Incidentally have you heard of Kris Carr? Check out her brilliant books, they really helped me.

Hugs and best wishes

Firefly x

[KellyM in reply to Firefly14]

Thank you, Firefly. We definitely have a lot in common. Thanks for the Kris Carr recommendation, I will definitely check that out. You are right...hugs from the little ones are the best...it's what keeps me going! All the best to you and your family!

[prosecco1]

Hi,

Welcome to our club, even though no one wants to be here, but be assured we all know how you feel, and you will find the best help and advice here. I am a relative new be, diagnosed 6 months ago, and on W+W like you, it's hard to take in and even now 6 months down the line I still can't believe it at times.

Take Care and keep us updated on things

Elle x

[Quarry]

Kelly - sorry to hear you have joined us......on the Green Tea, I am encouraged to take supplements as the Mayo study did find some evidence it inhibited CLL development. However, don't drink tea, as you would have to drink vats of the stuff every day. I get tablet supplements from a health food/medicine shop with a recognised brand (in the UK). No mention of liver problems as a result (during consultations over 3 years). Hope this helps

[jangreen]

Hi sorry that you have had this diagnose but this is the time to educate yourself on Cll. As others may have suggested be careful who you tell as Cll is a slow growing condition. Try to take stock. Take a deep breath before giving away any information about your health. Please use this site to speak to others who just get it. Don't be afraid to post any questions or feelings. Good luck and best wishes

[kitcat49]

I have found the best treatment of all is a positive attitude. I've been on w&w for 15 yrs,..pretty much forgot all about it up until last year when my dr. said I needed to pay a little more attention,so I get my blood checked every 6 mos and just get on with life.Good luck and a long good life to you....Cat

[KellyM in reply to kitcat49]

I love your attitude kitcat! It definitely isn't what I want to deal with but it is what I have been dealt. I have a little boy that deserves every ounce of love and attention that I can give him...which doesn't leave any room for this cll stuff. I've got a life to live and that's exactly what I plan on doing

[skykomish]

Hi Kelly,

Sorry to hear about your confirmed diagnosis. It is indeed a lot to get one's mind around. At least you can be assured that you are surrounded here by many supportive and empathetic people.

I was diagnosed a year and half ago, and I am also in the intermediate risk group. My only genetic deletion is 13q, but my CLL is unmutated. I have taken EGCG supplements since being diagnosed. I've tried to match the dosing of the Mayo clinic study. I told all of my doctors about my taking EGCG. My primary care physician has been happy to monitor my liver transaminase levels. I haven't had any problems. I also drink a lot of green tea. I've sort of acquired a taste for it.

The results of my taking EGCG are hard to assess. My lymphocyte count has steadily progressed, and now I an nearing treatment. My lymph nodes have waxed and waned, but generally increased in size. Maybe the EGCG slowed the progression, or maybe not. In any case, it felt good to be doing something, and I've felt pretty good since being diagnosed, and have only recently had some fatigue.

Skykomish

[SouthFloridaLady]

My advise would be NOT to take any supplement without consulting with your doctor first. Pretty simple. People will have all sorts of different 'methods' and products for you to experiment with, but "buyer beware". Wishing you the best!

[Michaeljohn50]

Hi Kelly, welcome to this supportive community. I take green tea tablets daily marketed by Holland & Barrett and available over the counter in the UK. My consultant's advice was it might just do some good. I have been untreated on W&W since March 2003. Being positive, eating sensibly, keeping as fit as you can and enjoying every moment is my approach. Our journeys are all different; good luck with yours.

Michael