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CLL questions

CLL questions

Posted by Tom__CLL on Apr 21, 2016 4:41 pm

Hi,
I am new to this discussion area. My wife has CLL currently with no symptoms.

The diagnosis of my wife's cancers brought a great shock to us both. My wife was first diagnosed with CLL a couple of years back. Then, last year micro calcifications were found in a breast.

Surgery has removed and thus solved (I hope) the breast cancer. The CLL however seems to be progressing. Since there is no cure, my thoughts turn to what can be done to slow the disease.

I have a few questions that I will post here in the hopes that someone has experience they would share.

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What is the best way to engage with an excellent doctor in CLL? We are currently seeing a hematologist who seems to practice medicine from earlier times. He is just not plugged in to studies/trials/new developments. To be fair CLL is just a small part of his practice.
Our GP who referred us to him doesn't have contacts in a research hospital such as Princess Margaret. It would be a relief to know that she was being treated with the best that current knowledge provides.
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I have been tracking her absolute lymph count since she was diagnosed. Her doubling time is just over a year, currently at 19. The logarithmic rise suggests her count will reach 50 in a couple of years. Can anyone suggest at what level symptoms are usually seen?
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Her platelet count is decreasing since she was diagnosed. While the numbers have a great variation sample to sample, the trend is linear. Her count has decreased from 170K at diagnosis to 132K. I am told trouble begins to show at around 100K. I am afraid the decrease in platelet indicates stage 4. Her hematologist seemed un-concerned. There were no tests done and no consideration as to the cause of the platelet decrease. Any experience you have to share in this would appreciated.
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We read that green tea extract may help slow CLL. Is this snake oil?

 

Re: CLL questions

Posted by JDD on Nov 25, 2016 7:52 pm

Hi there my name is James and I have been in remission for 18 months......I am from North Bay,Ont. My cancer doctor is Dr.Gill fron Sudbury.In 2 years I went from being bed ridden......today i feel great and I also had 2 skin cancers removed from my scalp and have been feeling better than i was but still have episodes of upset stomach sleepleeness...everyday i open my eyes in the morning things seem good.whats hard is that people always think you look good etc.which is not the case.I have been having a hard time accepting what I have and how to deal with the ups and downs.anyways I am a 59 yr old mail who was never sick a day in my life until a little over 2 years....hang in there its a tough road yet there is good times also

Re: CLL questions

Posted by Norma on Nov 26, 2016 11:10 pm

Is so true, kind of open my eyes each day and wonder what the day will bring, yah I think everyday I am getting stronger, I am looking better, but I sure don't feel good everyday, aches, pains, new side effects, is that new pain cancer recurrence, it's just dang hard this new normal!

Re: CLL questions

Posted by JDD on Jan 1, 2017 11:35 pm

you never know whats coming when the day starts.............some days I dred getting up and cannot wait to go to bed at night

Re: CLL questions

Posted by Norma on Jan 3, 2017 10:20 pm

Just wanted to say I totally understand what your saying and feel the same way! Just want to have a good day! Wishing you many!