Mary J
Posted by

CLL

Mary J
Posted by
25 Mar 2015

Diagnosed five years ago and still going strong

My name is Mary, I am a 56 year old mother of four sons. I was diagnosed with CLL five years ago and so far it has remained dormant. I see my oncologist every two months now because my WBC keep increasing. I recently had pneumonia and had to go on levaguin for 10 days because my immune system wasn't strong enough to fight it. I hope that I live for at least anothe 20 or 30 years. because I want to meet my future grandchildren. I am still waiting at this time lol!  I read somewhere that there is a drug out there that can be mixed with normal chemo drugs to help attack it without all of the harsh side effects that just chemo gives. I hope that if I get to that point, I can go this route and look forward to at least 30 more years of life.

Comments

27.03.2015

Hi Mary,

Thanks so much for getting in touch and sharing your experiences with CLL with us. Really glad to hear that you are over your recent bout of pneumonia - it's been doing the rounds.

We're doing everything we can to beat CLL and have made enormous strides in recent years with new treatment options coming to the fore all the time. Unfortunately we're not able to advise patients on specific treatments and would recommend that you get in touch with your consultant about options.

However we can say that we're continuing to make progress in the field of CLL and there is a real buzz within the blood cancer research community that the next big break through for CLL will come very soon. You can read more about what we're doing here to beat leukaemia here: https://leukaemialymphomaresearch.org.uk/research/how-were-beating-blood...

In the meantime remain positive and remember that we're here to help in any way that we can. Are you currently on watch and wait? 

Anonymous
27.03.2015

Yes I am, but I remain nervous all the time. Worrying abour hearing that I need to start treatment, hoping I never hear those words!

Anonymous
29.03.2015

Hi, I am 64 and on watch and wait. I go every 3 months to the oncologist. I am in the states. He has said that there are better treatments now than ten years ago and there will be even better treatments in ten years. I, too, am so hopeful and I appreciate the research going on. My first grandchild is due in June. I have badly swollen lymph glands that look hideous to me and I am not easily able to NOT be constantly aware of my situation because I see it in the mirror. I would love for a way to shrink them without harsh chemo. I know my struggle is not as great as so many with lymphoma, and I am inspired by their stories. Let's continue to stay positive in our long journey. Blessings.

Anonymous
30.03.2015

Mary, It truly is maddening and scary to be waiting to have treatment while watching counts go up. I too have been where you are now twice.
I want to try to help you cope by sharing from my experience. First, although everyone is different, the chemo treatment which you may have is not as bad as you (or I) imagined. Having gone through breast cancer chemo with girlfriends and bladder cancer with my mom, I was prepared for horrible side effects. While CLL chemo is not a picnic, it is not nearly as bad as other chemo treatments I am familiar with. I had no overwhelming nausea as I feared--just some tiredness by the end of the 6 months of treatments. You will get through it OK -- and then you get to watch your counts go to normal--yea! I am now on the wonderful drug Imbruvica and it is truly a miracle drug. No significant side effects and my counts get closer to normal every month. Several drugs in the same family as Imbruvica are being developed constantly and many are in trial right now. I am sure you'll see those grandchildren. The medications for CLL now are changing for the better all the time. Hopefully soon it will be just another chronic illness like diabetes that a person just has to take medicine for for the rest of her life -- no big deal.
Don't get down -- your treatment options are not so bad -- I'm a wimp and I have gotten through this just fine and you will too. Hope this helps.

Anonymous
31.03.2015

First of all, bless you sweet lady! I am so happy that you have come through this so amazingly. That gives me more hope for the future and helps ease my fear of the unknown. If you don't mind, I would like to share this with my oncologist next month when I see her. I did some research and discovered medical drug trials they are having some success with so I will discuss this with her as well. Every since I was diagnosed, I have been living with this fear that my time is limited. Actress Jill Clayburgh had and died with CLL, but since then these trials have been reducing that number. I am so sorry to hear about your mother and friends, my thoughts and prayers are with you. Take Care Lyn