recently diagnosed with CLL

In Jan 2015 I went to the hospital with a platelet count of 1,000. The doctor told me I had ITP and treated me for 10 months with steroids, IVIG, and Nplate shots. After 3 more hospitalizations, I changed doctors in November. The new doc started me on Rituxan, continued the weekly Nplate, and scheduled a bone marrow biopsy after 4 weeks of platelet counts of 10-25,000. He told me on Christmas Eve I have CLL. I started FCR last week and will have 3 days of that every 28 days. My platelet count this week was 218,000, so no Nplate shot this week. Side effects are mild- upset stomach, mild headaches- but overall it's easy so far. I turned 69 the day of my bone marrow biopsy in December. I've been in excellent health until a year ago. All my blood work readings are great other than platelets.

I look forward to following the posts of the group.

ohiojim

6 Replies

oldestnewest
  • Welcome, Ohiojim, although I'm sure you'd rather it wasn't necessary. There is a lot of information available here for those who understand it!

  • Sounds as though changing doctor was a good move. FCR is possibly the best chemo-related treatment for cll and often gives lengthy remissions. I completed 6 rounds over 20 months ago and feel so much better than before treatment.

    This is also a good forum to ask questions as there are many folk here with great knowledge despite not being medically qualified. We can also relate to what you may be going through mentally and physically.

    I hope your treatment continues to go well. Do keep in touch if you feel able.

  • My first doctor was a hematologist/oncologist but never mentioned Rituxan or bone marrow biopsy or spleen CT scan like my 2nd doctor did. My first doc diagnosed me with ITP, an auto-immune problem that attacks platelets, and she wouldn't look for anything else for 10 months. My 2nd doc diagnosed me with CLL within weeks of treating me. I wish I new a year ago what I know now.

  • Ah ha !!! Finally someone else with high platelets,,last Oct mine were 944,000. Dr. Would like to get them down but has not as yet suggested anything. I think he may be waiting for next blood count,just incase it corrects itself (my assumption here) So FCR eh,I will try to remember that. I'm 66 and am in my 16th yr of cll,still on w&w....lymph ices are starting to swell and ache a little. I don't know if I'm just supposed to put up with those as part and parcel or go in to see him....Cat

  • Dear Kitcat,

    Wow 16 years with CLL and still OK. I am very impressed. I think I may have had CLL on a "slow burn" for years too. Just not diagnosed yet. I remember always telling my doctors that I was tired. I guess they hear that a lot. I find that an ice pack around my neck especially at night to get to sleep really works. Even a little ache and discomfort can keep me up but using the ice pack wrapped in a terry towel is really effective. It's a little thing but sometimes the easy fix is all that you need. Who knows it may even help with inflation.

  • Thx for reply Kathy,yes 16yrs (that I know of). First Dr. Went overboard convincing me it was nothing to worry about,which I think was a good thing because I sure haven't. But I think it's rearing it's ugly head now. Still feeling pretty good but getting funny little issues.I also was diagnosed with fibromyalgia so atributed fatigue any any aches etc, to that.As a Christian ,I have no fear of death,more afraid of chemo actually. Take care my friend.

You may also like...