CLL and Hives

Recently diagnosed and feeling the fear. I thought I was a healthy 40 yr old. But last year started getting hives all the time. Not to mention my glands in my neck that were on and off again swollen over past years. The oncologist advised my WBC is at 38 in March 2016. But had no explanation about the chronic hives I now have. Never had an allergy in my life u til now. I have to take allergy meds every 24 hrs.... 

Anyways still pretty unclear and not given much answers from doctors. Doing my own research and watching Truth about Cancer.  Does anyone else believe this can be treated if not cured naturally??? 

Nice to meet you all and thank you for having some where I can talk. Haven't had the strength to tell my family. Only my boyfriend knows and for now ... Well all of you . 

32 Replies

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  • Welcome AM75

    Just to say hi.  CLL can be treated when needed. Ask away specific questions and answers will be given to the best of our ability. Not sure about the hives but well worth going to your GP and finding out if he can help. Ifyou've already done this then ask for a referral to a dermatologist.

    This is a very helpful and friendly site so any queries just ask away.

    Best wishes.

    Sue

  • I have hives on and off as well . I m fairly new at this, 6 months. I have an oncologist who says watch and wait , but I've decided to do Chinese medicine and acupuncture . I think you have to do what's good for you  . 

  • Welcome to our very exclusive club! You will learn a lot from the members. They are great folks.

  • Hi.   I had hives and strange skin symptoms like pressure urticaria years before being diagnosed with CLL. Mmy first onc said was not related. The specialist I see now says it is.   Right now I'm having a skin problem and will have to see aa dermatologist soon. I think there is definitely a relationshi between this disease and sskin problems.   

  • There are various versions of leukemia cutis in CLL, and you need a dermatologist to correctly diagnose it. It is when CLL involves our largest organ, the skin... however it is fairly are.

    More here

    dermnetnz.org/dermal-infilt...

  • Good Morning everyone, thank you for replies . I will be taking your advice and look into more. 

    Is anyone on any specific diets? 

    I've read about changing diet can help. Juicing, veggies fruits ... Everything plant based. 

    Since diagnosed... I am afraid now to eat meat! 

  • AM75

    Try a specific post on diets, you'll be amazed at how manyanswers you will get. Lots of natural foodies on this site. Personally I mix the two but an very careful with fresh food and meat re hygiene. Good luck.

    Sue

  • A healthy diet, high in veggies, low in meat, cook from scratch, avoid packaged and processed foods etc. low in salt, fats and sugars...

    General overall health is important in CLL and daily exercise is of great benefit... loose the bad habits and excess weight, if any... reduce stress and take time to do things you enjoy...

    Truth About Cancer ...maybe not so much

    sciencebasedmedicine.org/th...

    ~chris 

  • Thanks for that link,  Chris. A dear, well-meaning friend in America keeps sending me links to "Truth about Cancer" videos and I took one look and knew they weren't right.  I couldn't think how to respond to her objectively though, until I saw that link. 

    Paula

  • What are your thoughts on the series truth about cancer? I was amazed to find out so much info and choices that are out there. The only thing is does it also refer to cll? 

  • Before you look into anything in an effort to learn something hew, make certain that you understand how you can be influenced by Confirmation Bias:

    en.wikipedia.org/wiki/Confi...

    Neil

  • This is a good point made! In only one day on this site I am realizing that the nature of this beast CLL is all in moderation? Taking the healing powers of the earth but when if ever trusting in conventional healing methods. Thank you... I have a feeling I'll be sharing a lot here. 

  • Because CLL is a chronic, slowly developing disease, we have the time to improve our health living with it.  Symptoms also come and go, making it very hard to know whether anything you are doing to slow CLL is having an effect or not.  Some make the mistake of trying too many things at once and end up not knowing what to stay with and what to drop.  Even the latest drugs do not work for everyone, so why should we expect complementary/alternative approaches to work for everyone?

    Neil

  • Again good point! What works for some may not to work for others. I have always had issues moderating myself! 1st week I found out  I ate cabbage, garlic and juiced carrots all week. Had so much gas i thought OMG... I'm gonna blow up! I've been better now that's it been a alittle over a month. 

  • Hi AM75- you're in the right place! This is a great community for answers. I know you said you were doing your own research and Patient Power has some great videos. Here are some ones about diet- patientpower.info/search?q=...

  • Thank you for the link, looks like I have lots of reading to do.  I am trying to find what will work for me. I do believe in naturopath and homeopathic ways of healing. 

    So thank you great link. 

  • I have confidence that you will find the best treatment for you! Just be sure to talk to your doctor before starting anything. Happy to help :) 

  • AM75 is asking about diet.  This is her post, so please answer her first.    I too have a question.  I want to know about the relationship between alkaline and acidic in the body.  With all I've read, we want to be mostly alkaline.  I am on W&W.  I drink orange juice mixed with cranberry juice in the morning before my two cups of coffee with creamer.   I haven't seen a nutritionist, so would like some input if you will.  Thanks all.   Carole 

  • Hi AM75 and Carole,

    I've created a collection of diet related articles in this post:

    healthunlocked.com/cllsuppo...

    With regard to acid/alkali foods and health/cancer, here's an easy to read overview regarding the myth of the alkaline diet theory of disease:

    authoritynutrition.com/the-...

    A more technical debunk:

    quackwatch.org/01QuackeryRe...

    An insight into the dangers of believing it:

    skepdic.com/alkalinediet.html

    Finally the alkaline diet and 9 other cancer myths:

    scienceblog.cancerresearchu...

    So in summary, don't worry about trying to change the pH value of your body - it manages pH homoeostasis extremely well unless you have a rare illness. What's more, the body processes that maintain homeostatis will negate any attempts you make to change your blood/body pH by excreting excess acid/alkali through your urine and skin, etc.

    Neil

  • Thanks, Neil.  I appreciate you putting this together.  Will be of interest to others too I'm sure.  Carole

  • Slight itching around belt, under arms and crotch for a couple of days. Sunday began to have swelling in wrists, and inside elbows with itching numerous other places. Visited urgent care for prednisone shot and tabs. Subsided in about 12 hours but I have no idea why it occurred. I have done nothing difference that could have caused it. 

    Dennis, Auburn, AL, 17p-, Ibrutinib since Oct 15

  • Hi, in response to your question about diet, I understand your concern about meat.  I try to eat grass fed beef and lamb, organic chicken, and wild caught fish and shrimp.  I think it is important to eat animal protein, as humans evolved and grew large brains eating this way and protein is important for building and maintaining healthy tissues and muscle strength.

    Regards,

    Maxine 

  • Hi Maxine.  I believe you're right in choosing grass fed and organic meats and never farm raised fish.  The problem with food here in the US is it's not the same food we ate as kids.  GMO's and pesticides are rampant.  You really need to read labels and buy organic vegetables.  Thanks for sharing your post.   Carole

  • Hi AM75,

    I have had skin problems of every kind since CLL.  Much more allergic to poison ivy  now and I like to garden so gloves are a must!  I have a history of hives and other lumps and bumps.  Keep up with your sunscreen use and wear a hat in the sun.  CLL seems to impact everyone a little differently.  You need to have skin checks twice a year at the dermatologist for skin cancer.  For me there are definitely skin issues involved. As for natural cures that is an interesting subject.  Different cultures approach this differently.  Optimizing nutrition and exercise seems to help.

    Welcome to this website.  It is a wonderful place full of kind and caring people.

    Kathy

  • I have CLL. Recently been treated with chemo and a short time later experience hives on my arms and legs. They only affect those areas exposed to the sun.I believe there appears to be a  connection. They eventually   cleared up in about six months.

    <Email address deleted - Admin: healthunlocked.com/cllsuppo... >

  • Hi AM75, Welcome to the group, though I'm sorry for the diagnosis that has brought you here.   This site has been a lifeline for me - I hope you find it the same. 

    I read in your profile that watching Truth about Cancer by Ty Bollinger is giving you hope...   I'm afraid that I would be very wary of those programs...   They may be giving people hope in the wrong things...    Treatments for CLL these days are much better than they were just 5 years ago, and a lot of people are doing very well in living with CLL, many never needing treatment at all.  There are plenty of reasons for us to feel hopeful about our future, within the field of existing mainstream medical practice. 

    I see that you are newly diagnosed, and will have loads of stuff to come to terms with, and so much new information to absorb… However, last year I wrote three posts specially for newly diagnosed folk, that you might find helpful. They are collections of points that I’ve picked up from other people here, and from my own experiences.

    I was prompted to write them, because I noticed when people are first diagnosed, they are usually NOT told about simple practical things that can do, to improve their prospects on the CLL journey.  

    Yet there ARE things we can do – things to ease our CLL experience both medically, socially and emotionally. I’m not talking about complex medical stuff, just simple, do-able stuff. Many folk have told me they wished they'd been given such information when first diagnosed...

    healthunlocked.com/cllsuppo...

    After I wrote that first post (link above), many people mentioned points of their own, which I have added to my lists.   So, the lists became quite long, and I added 2 more parts.    I hope you'll find something there that's relevant to your situation. 

    Best wishes, 

    Paula

  • Thank you so much Paula! While reading your post and reading your previous posts I stopped crying. Thank you for the warm welcome in as this gives me hope that we can all work together in healing. 

    I read your profile and realize you have years of experience in this. There is something to be said in taking advice from those with experience. 

    I plan to take your steps seriously! Because I need to find a way to cope. Then remember to enjoy my life. I haven't said anything to my parents or sisters as " they are like the movie " my fat Greek wedding" ( have you seen that movie? Very loud family! Lol very European traditionalist haha

    Anyways thank you again. How are you doing Paula?

    Thanks

    AM   

  • I'm so glad my posts were helpful to you, AM.  Your appreciative response really encouraged me this morning.  

    Thanks for asking how I'm doing.   I'm planning to write an update on my health situation when I have time, but it's been quite an eventful time in our family recently, with my surgery last autumn, then a lot of other illnesses in the family.  

    But on a more positive note, it was our son's wedding in Glasgow a few weeks ago. It was  a very happy, uplifting occasion, and I was so grateful to be there.  A few months ago I thought there was no way I'd be well enough to go,  but I DID go and had a lovely time - even joined in the dancing.   Then  at clinic earlier this week I found out that my bloods were reasonably stable so no more treatment necessary for now...  I was SO relieved. 

    Yes, I have watched "My big fat Greek wedding".   Loved it.  I  understand your not telling your family about your diagnosis yet.  Once things have been said, they can't be unsaid, and if we tell folk while we're still upset and in shock,  then they too are more likely to be upset and go into shock. Not good for them or for us.  Give it time...  With CLL, we usually do have plenty of time... 

    Best wishes, 

    Paula

  • Welcome to our forum, AM75.  'Thought you were a healthy 40 year old, then began getting hives and swollen glands'.  At 40, I too thought I was a healthy 40 year old, but always had a mind set that something must be wrong because I'm feeling bad.  Oh to go back to that time.  Bottom line; I was healthy.  Other things in my life had me stressed to the point that all kinds of things were popping up.  That's me.  This is about you.  Can you go back in time and think of what was going on in your life when the hives began?  Were you/are you stressed.  Do you have a job that you are happy/unhappy with?  Our brain guides us along this journey.  The interconnection of brain and body is something I didn't understand until a few years later.  If others in the group are reading this, can hives cause the white count to go up as is trying to fight off the hives?  AM; you have come to the right place.  There are no dumb questions.  What you are feeling, we feel too.  We are all in this together.  The group is amazing.  You will find great comfort here.  Again, welcome.    Carole       

  • Skin rashes and urticaria are a common side effect with CLL.  If over the counter antihistamines don't control your symptoms you should be referred to a dermatologist. The dermatologist will have to work with your haematologist because some of the drugs used affect the immune system. Wishing you all the best. 

  • Hello AM75.  I suddenly developed hives, a couple of years ago.  After several episodes of hives, and having to get my blood tested, the CLL diagnosis came about on 10/22/14.  I was breaking out in in large welts, all over my body (think 100's of giant mosquito bites).  Itching like crazy.  I now take Hydroxyzine, 50 mg., every night.  If I don't, I'll break out.  My problem seems to be tied to histamine intolerance, as well.  I have allergic reactions to alcohol, citrus and tomatoes.  I used to love having a glass of wine with dinner or champagne for New Year's Eve.....  but there are worse things.  I am not allergic to ice cream or chocolate!    Had my follow-up exam with Dr. Coutre/Stanford, today.  My CLL is slowly progressing, but holding steady.  I am thankful for the good news, and thankful for this group.  Amen.

  • I did listen to season one of The Truth About Cancer and thought it made sense. Until Ty Bollinger introduced during season two Stanislaw Burzynski. 

    To me that did it. Whatever trust I had towards this program disappeared completely. I did not even bother to listen to season two.

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