3 Years past FCR

After a FCR ride from 10/13 -4/14, with more or less no side effects, I went in CR and MRD -!

Since then, blood counts were always in normal range. I have been doing well since end of treatment, enjoying a normal life with quarterly or all six months checking in hospital

After one year past treatment my MRD showed 0,1 % CLL cells. Then it went to 0,3, again 0,1 and again 0,3, where it is stable now.

I had never expected such a pretty good outcome.

Unmutated, CD 38-, Zap70 50%, Trisomie 12, no deletions.

blood counts last week WBC 6900, RBC 5,2, HGB 15,0, thrombo 178.000, LDH 170, vit d3 55,0, granulo 60%, Lymphocytes 25% or ALC 1.700, IgG 600.

Hop this is encouraging for new diagnosed friends looking for options.

Regards seoul

7 Replies

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  • Thanks for sharing Seoul and long may you continue to be better! I am still on watch and wait, most focus is on new drugs so it is nice to hear good old FCR is still a good option.

    Marc

  • Good news. Thanks.

    Sue

  • Nice to hear - thank you for updating us.

  • Hi seoul

    Great news and so encouraging, thank you for sharing. Long may your remission last.

    Best wishes

    Bubnjay1

  • That is very encouraging. I hope to follow your path, am almost 1 year post FCR now.

  • thanks for this yes it shows what can be done mind you im still not sure what all those number s mean and wish eveybody wouldn't use initials- I have no idea what FCR is for example nor CR or mrd can you illucidate for me thanks but looking good for you im happy fo ryou as it seem to be good in my eyes anyway --re diet I had healthy diet I thought but now do more greens more water no drink at all alcholhol wise --though wouldn't mind a red port as I have a vintage collection that's no good I have been giving away . -I do supplement such as C for hopefully stopping flus and colds d as I was told to use that --and use turmeric as a fellow patient does it and swears by it

    what I used to do was run and hour a day now I cant for some day mange five minutes and other no bother for half an hour get tired if I work in garden for a two hours but want to do more but cant -I do leg exercise doing tv etc but dite wise im pretty sure its good as once or twice whne out or at funeral I have reverted to be polite with sausage rolls and sandwiches and once at a pals had red meat --and next day had an itch I have not had for months soon as I get back on porridge soup vegges and a little checkne within a day im good again or as good as I expect now

    I do love a curry so get load of turmeric there anyway and now do mostly vegie currie and pudding is melons and pineapple no dairy either except when visiting so a little in my diet

    note the probiotics advice --I have been not doing a lot of thme anyway as my dite has improved my IBS to being almost drug free and have not had bowel problem for three months

    whther all any good for CLL I wil know next blodd test but it did redice by lymp count by 3 last time

    I have no idea of the other number and wouldn't know what they mean and ECGC mentioned I have no idea what he means --tried green tea but its not tasty to me but do lots of alkaline water 2 litre every day at least plus ordinary water between and at meals --oh and do loads of fruit now grapes , apples , and always have broccollu and caul at every meal even with curry and have developmed a taste for wait for it brussells --a childhood hate but I like them now

    its if anything at least metally allowing me to think im doing something -- ill try more to get fit

    only gave up squash in sept and remained unbeaten by son in law --kind of scared to try now fear of heart attack I guess

    so does diet help -- Glen Sabin thinks so -hes cured himself

    --some doc with cll have gone veggie they would maybe know a little about it -- so ill try beside good diet does no harm eh and its helped my prostrate anyway flow is better than been for five years

    do supplement help - here im lost a little doc says no -- and if I take Vitamin c am I strengthening the CLL or the immune system --this one puzzles me

    that my tuppence worth hope it may be of help I have kept diary of when tired agaianst diet and it does seem to worsen when im out and about at friends and taking on dairy and other stuff not in my strict regime can it be coincidence every time ??? ill keep at it and maybe try a few deviation to see if I get a reaction

    --pal was on chemo and when he drank alkaline water had no side effects if he forgot he got cramps and some sore bits -he swears by it oh and he gave up grapefruits as it seemed to make things worse when on chemo --don't know the chemo as im not up to name and such

    cheers hope info some good to somone ps gave up sweeties and chocolate as well and wheat unless sprouted grains and only do oat based porridge and pudding --you get oat based "cream " now -so porridge is back on menu big time even for tea -- as well as brose ( north east breakfast of oatmeal )

  • Almost 2 months post FCR....this gives me great hope!

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