Diagnosed 6 days ago

I'm still reeling from the news. I'm glad to have found this site. Some background:

I'm 58 years young and found out by going to the Emergency Room in November with a urinary tract infection that there was something irregular with my blood work. My husband and I just closed on (Dec) 10 acres and a home in the country. We have lived in our current home in the suburbs for 24 years planning on putting this home on the market ( March). Owning 2 homes and selling one - moving 2 1/2 hours away by June would be stressful enough without adding a cancer diagnosis.

Looks like no treatment yet- anxious to learn from this site what I can do to help slow the growth of my lymphs.

Again so glad I found this, Lisa

41 Replies

oldestnewest
  • Hi Lisa, I found out about my diagnosis March last year. My Doc said I could have had this 3 years ago. I never had any blood work prior to 2014. At first i thought I would pass away in a year, but my Doc said things may get worse in three years or thirty years or never get worse. Wait and watch. Once you get past the initial news and time goes on ... things settle down. This site has so many experts and so much support, feel free to post as often as needed. Eat healthy foods if possible and maintain your normal lifestyle as needed. I too have two homes and I plan on selling one and living in the one that is most comfortable. I do not have the lymph nodes grow at this stage but do have fatigue issues every so often. Observe this site every day and you will gain knowledge. Many expert post websites for even greater in-depth knowledge that you can have in your haversack. Mitch

  • Hi Mitch, thanks so much for your reply! It is comforting to know that there is somewhere to go - to learn and "talk". I am planning on moving - it's a life long dream and I don't want to give up on it even if it would be simpler and easier to stay here. I have always wanted a horse - may hold off on that for a bit but this site is giving me the courage to go ahead. Lisa

  • Hi Lisa, sorry to hear about your diagnosis, i am sure that this is a very difficult and overwhelming time for you one of which im sure everyone here has been through. we are all here to support you while the impact of what i can only describe as 'the grenade in the room' settles down.

    this is a fabulous site that i have only found to be supportive and informative. you are in the right place

    take care

    Loran

  • Hi Loren, you're right it is difficult and it is overwhelming but wow is this a great site!!! I'm already feeling so much better from reading different entries. Thank-you so much for taking the time to reach out to me. Lisa

  • Welcome to a group none of us would have chosen to be part of. If you are relatively symptom free then keeping busy is a good thing.

    Learn what you feel you need to know to be able to talk to your medical team and then try and get on with your life - moving house should be a good distraction.

    A good place to start learning on the main site is cllsupport.org.uk/cll-sll/s... This is a recently written article specifically for those newly diagnosed.

    Keep as fit as possible and eat well so should you need treatment in the best place possible.

    Hopefully you will be on W&W for a good number of years before any need to go to the next stage of your journey.

    Take care

  • Hi Myrddin, thanks so much for your informative reply I am planning on visiting the site that you gave me the hyperlink for. My only question is : I can tell that the site is in the UK I am in the United States the Midwest will the information as far as terminologies be different than it is here? thanks, Lisa

  • The information as you say is intended for the uk however cll is the same the world over as are the treatments just the way we access our health care is different.

    The terminology should be similar and certainly understandable. The units used for the different blood tests were updated recently to show the units more clearly. All labs seem to use different units not just a difference across the pond. If your results are in different units then there are other locations you can use for reference. Certainly our access in the UK to some of the latest treatments are behind you in the US. The cost of these new treatments is a challenge wherever you live.

    Patient stories should be similar to those in other parts of the world - treatment with FCR, still the gold standard if you are fit enough, should be similar too.

    Would be interested how you find the content as though intended for uk audience primarily we hope it is still of value elsewhere.

  • Hi Lisa, I'm 2yrs down the track from DX now, though life could end at any minute in the beginning should I or shouldn't I do lots of things. Now I've settled, and I think what do I WANT to do and I do it. I plan on being here for another 30 yrs. with all of the advancements in treatment lately we with the GOOD cancer have a much brighter outlook.

    Move to the country and enjoy you life, look after your health, CLL is so all consuming in the beginning, but don't make any major changes to your life in the first 12mths until you have your head around it yourself.

    Cheers Lynne

  • Thanks Lynn for your kind remarks. I am so excited to go to the country and I don't want to give up on it. Thanks for your encouragement. I feel the biggest negative to moving is the wonderful doctor I have found he is an associate professor in the Department of hematological melanomas . After June I will be driving a couple hours to see him but that's OK it will be worth the drive. Lisa

  • Sorry to hear about your diagnosis, but welcome and thanks for introducing yourself. Most of us can relate to what your feeling. It's a lot to get one's mind around at first. I remember those first confusing, scary days when I was diagnosed 18 months ago. But I was able to settled down after a bit. This site helped me a lot, to learn about my illness at my own pace and benefit from the experience of others.

    You've found a great place with lot's of friendly, well-informed people. Here's wishing you peace of mind (eventually) and lots of success and enjoyment of your new home.

    Skykomish

  • Thank you so much for your warm welcome. There has not been any history of cancer in my family so I have kind of felt alone and not sure who to talk to( besides my doctor) thanks sky!

  • Hang in there. I am 54 and was diagnosed in November and it's starting to settle in my bones. My advice is to educate yourself on your numbers( Blood work/ genetic testing) , get a good doc, eat healthy foods, exercise, meditate, yoga, get friends and family's support, breathe and sleep:)

    As my doctor so eloquently stated, " I don't recommend 'watch and wait' but 'watch and live!""

  • I love watch and live perfect! I have a great doc, so I'm just needing to learn about what's the healthiest I mean I know how to eat healthy but I'm not sure if there is anything in particular that is better with a diagnosis of Cll.

  • Welcome Lisa...I'm 62 and diagnosed 4 1/2 years ago. Lots of fatigue, but personally I find that the ability to just relax, realize that all is as is should be and just get on with living a life balanced between total freedom and some caution. We're all here for you so chat, vent, laugh, cry...just be yourself.

  • Hi doc thanks so much for your reply. I know I just need time to process but so many questions for example coffee should I give it up?

  • Lisa

    Just moderation in everything. Be careful around fresh food, ie make sure extra washed, food properly cooked (as if!) And food hanging around in places like burger bars. It's waiting bacteria we definitely do not need. All probably things you do now but it pays to be extra cautious and still live life. When you have time read through the site main posts there are some informative posts that will help you get the idea.

    Good luck with the move.

    Best wishes.

    Sue

  • People can go crazy with all sorts of silly miracle cures. For me, the first step was embracing the fact that this form of cancer is incurable. Okay, so play the hand you`re dealt. Instead of looking for cures, I looked for something to mitigate the fatigue (with some consultation with my family doc) which was B12 wafers, magnesium and the odd drink of Red Rain. So far that has given me some better days than I had over the previous 3 years...it just can take awhile to kick in when you first start taking it (for me it took 3 months). I still drink coffee, I still drink alcohol, I still go to lots of beach vacations. I try to avoid crowds, especially in cold/flu season and don't do as much hand shaking as I used to. I am free and enjoying life, with the odd pity party over the vitality I've lost. Nevertheless, I'm still on the green side of the lawn and living a life of abundance. There's many walking dead out there, way younger and with no diagnosis. So, all is good. Have a great one Lisa and laugh lots.

  • Wish I would have read this before I just posted asking about coffee I'm really wanting to do anything that's healthy and stay away from anything that's not. I'm sure that this is a very typical response . I really would like a cup and I keep eying my kerig with lust. Lisa

  • I certainly haven't give up coffee Lisa and I won't be doing so anytime soon :-)

    Newdawn

  • Thanks! Newdawn, I'm 2 weeks passed diagnosis and emotionally better. I have been reading about Ketonic Diet - so am excited to have whole cream in my coffee.

  • Sugar, preservatives, artificial flavoring and coloring, High fructose corn syrup.Those are things that feed cancer.If you can use honey or Stevia For sweetener.Try to cook with as much fresh organic vegetables and fruits. Lean meats. Personally I started juicing Because the nutrients go Iin to your body much faster than when you eat.There's also many supplements and vitamins that you can take To make sure that your body is And nourished as possible.With just a little time on the computer doing research you can Determine what's right for you.I had a Dr run blood work for my vitamin b12 D potassium ect. There's many things a doctor can help you to determine if you're getting enough. Or too much..lol

  • Thanks goneblonder! I am drinking green tea like its going out of style.

  • Hi Lisa, I think coffee is ok. Go ahead and enjoy it. My Doc wanted me to give up alcohol ... Which I did and limit dark colas. That was more difficult than alcohol. But feel so much better, I have replaced it with water, orange juice and a variety of other juices. I think coffee gives you a little zip, but I am some-what cheap and spend only a dollar fifty per cup.Mitch

  • I am not sure if I can completely give up alcohol. I think an occasional (2-3) week glass of dry red is still on my agenda.

  • Maybe we could hang out together and I could watch you drink alcohol. Just a thought... I could take Facebook pictures and dream that could be me drinking...lol. Mitch

  • I love that reply Docm that pretty much sums it up,I find if I feel tired I either rest or go for a walk sounds contradictive but going for a walk and seeing whats about help I might see somene to chat too that I otherwise wouldent and always feel better after.I have had CLL for 10 years although only diagnosed in 2014,I don't know if it helps but along with the usual vaccinations I take a multie vit and Green tea every day,aquafin I wish you a long and happy W&W,regard Maggie[Sun_flower]

  • Yes sunny even though it seems contradictive, I too like to get out in the fresh air to clear the cobwebs. I just got in from shovelling snow so I got my air and exercise for the day

  • Went to see Sisters last night laughed so hard I though I tore a muscle in my gut.

  • Thanks taking vitamin d and wondering if I should start fish oil again.

  • Hi Lisa, welcome and we are glad you found us too! We all need each other.

    It's so soon after your diagnosis and you weren't psychologically prepared for it so I'm not surprised you're feeling shell shocked just now. I was diagnosed 3 years and 8 months ago (not that I'm counting or anything) but the day stays with you. I felt like I was pacing round wildly with terrified eyes like a deer caught in headlights waiting for a car that might never hit me. But I was still anticipating it and it felt very frightening.

    As time has passed, I've learned to understand my 'enemy' and for me it helps. Even in these few years treatments and understanding has progressed massively and CLL is firmly in the scientific limelight. The fact that you have found an expert specialist is a fantastic bonus and certainly worth travelling to see.

    We all look for that magical elixir to halt the errant lymph production but the only thing that truly helps apart from keeping yourself as healthy as possible, is watch and wait with the CLL but live and progress with your life! Absolutely no reason not to so enjoy your new home because you're going to be enjoying it for a very long time yet.

    Ask any questions you like and keep us updated on your progress.

    Supportively,

    Newdawn

  • Ok this probably seems so silly to be asking this in the grand scheme of things. But what about coffee should I give it up ?

  • Hi Lisa, Welcome to the site. It must have been a shock for you but as months go on, you will go through many different emotions but to know there are many of us going through the same thing on this site can help tremendously. I was diagnosed 7 years ago (50) when I went for an eye test and my optician sent me for blood pressure check, my doctor took bloods and what a shock when he rang me at 7pm one night to ask me to have some more. Anyhow since then I have been on 6 monthly checks and then yearly, my counts have actually decreased but I made a concious decision early on that there was nothing I can do, I have to accept and do the best I can to keep myself as healthy as I can until that time when I have to start treatment. I decided to take early retirement at 57 as the journey to work and the stressful job was making the fatigue worse. I had a couple of months off work and now work for an agency very close to home, this has helped me tremendously. Out of my 'payoff' I upgraded our caravan and try to go away every weekend so I suppose my advise is please don't put your life on hold and don't put off living that dream. xxx

  • Hi Lisa and a big welcome. I have nothing much to add to the great replies you've already had. I'm so glad you've found this site and the wealth of knowledge, experience and support it provides. I was unbelievably frightened at the time of my diagnosis and was so surprised and grateful when I wrote my first post at the overwhelming support I received. over the months, I've come to understand it all quite a lot better and although it still frightens me (somedays more than others) I feel much better able to cope largely thanks to this group. Keep us posted. Peggy

  • Hi Lisa,

    Welcome to the club that nobody wants to join. I guessed you were from the USA, just by your phrasing and word choices. I'm an East Coaster that has lived all over the US, diagnosed in 2008 and now on my 3rd treatment, without ever having Chemo.

    Most people with CLL progress much slower than me, and about 30% never need treatment. We all hope you fall in that group. Regardless of how high your blood count is and how fast your are moving towards treatment, we all strongly suggest you see a CLL expert (a doctor that sees only CLL patients and runs clinical trials) at least once now and when you or your local doctor suggests starting treatment. There is good solid data from the Mayo Clinic to show that is the best way to live longer with CLL (much better than changing your diet, eating or not eating certain foods, or any other of the common myths about things that will impact your cancer).

    Here is a map showing where those experts are-

    google.com/maps/d/viewer?au...

    If you want to learn more about CLL, treatments and life style choices we suggest you start reading here- cllsociety.org/cll-101/ that website was founded by Dr. Brian Koffman who is also a CLL patient.

    Another good source of info is powerfulpatients.org/about/ where you can see videos from other patients (including me).

    And patientpower.info/ which was founded and being run by another CLL patient Andrew Schorr.

    All of this can be like drinking from a fire hose, but sip slowly and take your time, you have plenty of time to learn and live, so start slowly - this is a marathon not a sprint.

    Eat healthy, get regular exercise, so when you move to that dream house, you can enjoy yourself.

    As Dr. Brian Koffman says- we are all in this together!

    Len

  • Hi Len, The google map link showing the experts in my area didn't work. Is there another way to find it. I am seeing a hematologist an Associate Professor at the University of Kansas Cancer Center.

  • For some reason the HU website and/or Google break the web address at a question mark. The only way I know to get this to appear is to post it in two sections and to use it you should paste them next to each other in your web browser.

    google.com

    /maps/d/viewer?authuser=0&hl=en&mid=zH6d3jS2rG_4.kVAIy6hqrdZo

    If that won't work, the map is derived from a list published by Dr. Jeff Sharman

    cll-nhl.com/p/cllnhl-doctor...

    and a list published by ACOR:

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

    Alternately if you want to check your existing doctor, go to the hospital or University website, look up the doctor's name & view his practice specialties. The best choices will likely treat only CLL patients and run clinical research trials for CLL. Some other good doctors may also treat NHL or Lymphomas in a research and clinical trial environment.

    IMO Less desirable are those that treat all blood diseases & cancers, or are bone marrow transplant specialists.

    Len

  • Hi Lisa, I don't know that I have much to add after all the wonderful support thus far. I can say I relate only being new to this myself 2 months at 49. It is shocking and overwhelming but the sincere, intelligent, compassion you will recieve here is priceless. Hope you find some peace in the caos. It does become less frightening eventually.

    Sincerely

    D

  • Hi Lisa,

    I was diagnosed 2 years ago following spinal surgery, to be honest sometimes I deal with it and sometimes I don't. I can easily get mega stressed about the possibility of being stressed. That's not me of the past at all.

    I have taken the time to read and learn about CLL and still have much more to learn. I try to eat a combination of healthy unprocessed foods including some super foods! Like greens, berries, nuts and seeds! Unnfortunately It doesn't seem to slow down my blood counts. But what the heck. I still enjoy coffee and red wine, but the ability to binge on chocolate like I once could, just doesn't work.

    How lucky are we to be part of this global community and have access to so much information and support.

    Cheers

    Lorraine

    Australia

  • Thanks Lorraine, I go back and forth on reading on CLL - sometimes it just makes my heart race too much. I Just downloaded The Perfect Health Diet seems to make sense. I have a kind of roll up your sleeves mentality so it helps for me to do something - rather than wait and watch.

  • Hi Lisa

    Can't add much to the wonderful replies so far but just wanted to welcome you. My mum has CLL and is the same age as you, 58. Dx 1 year but no treatment yet, she also thought she wouldn't last long such was her initial fear but she's getting there slowly.

    You will find super support here, technical help and many ears to listen when times are tough.

    Best wishes

    Clare (UK)

    Xx

  • Clare, It brings tears to my eyes that you are on this site for your mom! What a lucky mother to have you! Lisa

You may also like...