XMAS WISHES FROM DOWN UNDER.

[nuttynannie1947]

MY FIRST POST. I AM A VERY YOUNG 67 YEAR OLD NUTTY NANNIE FROM NEW ZEALAND. I HAVE BEEN FOLLOWING THIS SITE FOR THE PAST FEW MONTHS. I HAVE FOUND THE INFORMATION AND THE SHARING OF PERSONAL EXPERIENCES A REAL BENEFIT. I WAS DIAGNOSED WITH CLL 30 MONTHS AGO. OWING TO MY INCREASING WHITE CELL COUNT AND ENLARGED LYMPH NODES I WAS STARTED ON TREATMENT IN JULY THIS YEAR. I HAVE JUST COMPLETED MY FIFTH ROUND OF FCR. MY NEUTROPHIL LEVELS HAVE BEEN VERY LOW DELAYING TREATMENTS FOR UP TO TWO WEEKS. I FEEL FINE BY 8 DAYS AFTER TREATMENT. SO FAR I AM COPING WELL, BUT AT TIMES I FEEL QUITE VUNERABLE AND WORRIED ABOUT THE FUTURE. MY PARENTS, HUSBAND, OUR FOUR KIDS AND TEN GRANDKIDS GIVE ME THE INCENTIVE TO FIGHT THIS THING. I HAVE LOTS TO LIVE FOR. I AM ENCOURAGED BY READING EVERYONE'S STORIES AND UPDATES REGARDING NEW DRUGS. THIS CERTAINLY GIVES LOTS OF HOPE AND FAITH IN THE RESEARCH THAT IS BEING DONE AROUND THE WORLD. I WOULD LIKE TO WISH ALL OF YOU ENVOLVED ON THIS SITE A VERY MERRY XMAS AND A HAPPY HEALTHY NEW YEAR.

[Newdawn Administrator]

A warm welcome Heather! Good to hear from you especially as we were diagnosed the same time.

I'm pre-treated but am unlikely to avoid that 'pleasure' I'm told. Wishing you well with your treatment which sounds to be going well and I hope you have a spectacular remission. And you're absolutely right, we are in such a promising era for CLL research and development.

With such a lovely big family you must have heaps of love and support spurring you on. I'm adding my best wishes to that Heather.

And we all totally understand feelings of vulnerability. Thanks for sharing yours with us.

Merry Christmas to you and yours and may 2015 be a CLL free new year!

Newdawn (UK)

[Mikey47]

Happy and Healthy Christmas and New Year to you too, nutty nanny

You're right, there is so much to be optimistic about in the research and new drugs coming online. I am one of those fortunate to be on Ibrutinib for the last 15 months and can forget about CLL and get on with life.

So don't worry, if you should relapse after FCR you will be eligible for one of the new drugs. Who knows, depending on your FISH type and other factors individual to you, you may get a lasting remission that some are now even tentatively referring to as a 'cure'. I'm sure you have read the stories.

I'm sure you'll still be around long enough for your grandkids to bankrupt you!!

[speckly]

Lovely to hear from you! Like your description of yourself! Great family too. I wish you all the best and hope the treatment pits you into remission for a long time to come. North or Sputh Island? I have kids in both! But sadly I am in UK. All the very best for Christmas and the New Year

[wroxham-gb]

My best wishes to you heather . Stay strong and positive as you sound in your post. New year wishes from

Great Britain. ☺

Sue

[fieldmeadow]

Hello Heather, What a lovely large family you have!

I am post FCR (completed 6 rounds in April). I too had to wait a week or two between some rounds because neuts had fallen very low and had ended up having a reduced level of the 'F' element for 2 rounds due to my blood counts.

However, following various tests my consultant says I should now have a very good remission and am already down to 6 monthly appointments.

SO BE ENCOURAGED by some of our stories. And like others have already mentioned, by the time we require further treatment there will be lots more to choose from (especially non-chemo ones).

Those of us in the UK send our best wishes to you and your family for a very happy Christmas and healthy New Year.

[Jomary8505]

Hi Heather,

Thank you for sharing! I too am on FCR just began round 2. Round 1 went well and I am hoping to have the same experience for the following treatments. I too share the same concerns about family. I will be 52 soon and consider myself a very positive person and so was very surprised that I was so terrified of beginning FCR despite the recommendation from a NY CLL specialist. I am a nurse and reviewed every possible side effect and future complications. I finally got a grip on the situation on my first day of FCR. I am not sure exactly what I expected but I thought I could possibly be quite ill. The pre-medications have prevented this so far and although the staff nurses did go over side effects, they were reassuring that most patients do very well and they were there to help at all times should I need anything at all.

There is still an element of this not "being real" on some level. My husband accompanied me the first day of this second cycle and shared the same feeling. He then added, "I guess it doesn't get anymore real than this!" as I sat there having my port accessed for the first time and treatment began. (One of the pre-meds is Benadryl which made me sleepy and him somewhat alone to absorb it all!)

While I am still well aware of the possible future complications and possibility of relapse, I have come to terms that this is the best decision I could make for now. I was not feeling well with enlarged spleen and lymph nodes along with fatigue, dropping platelets and hemoglobin. I actually felt pretty good after the first treatment and was feeling as though this may be a cure. Upon commencing this second treatment, I do realize it is for me, at best, most likely to give me a remission which may not be long due to my FISH results BUT I am very optimistic about the future treatments for CLL/SLL. We just need to make the best decisions for treatment available now if needed and need to thoroughly understand the implications to our future health. I do believe that a "cure" of some sort is near and that is what I am choosing to focus on. Nothing is guaranteed and I have to focus on the positive which is more likely than the negative which is less likely.

I am know many knew options are being tested now and will be available in the near future and we will there to benefit from these new therapies. I included my recent experience of FCR and the feeling of this all not somehow being "real". Hopefully it helps anyone else in the same situation. Many of the others on here have experience with many different treatments and offer great insight and support to us all just beginning this leg of our life's journey. Thank you all and have a very Happy, Healthy, Peaceful Holiday season!

JoanMary

[nancyjo]

Thank you love and merry christmas to you!