CLL treatment that concentrates in shrinking the spleen without undergoing chemo

When I started treatment for CLL, my spleen was slightly swollen, but I had a huge lymph node under my arm abour the size of a baseball.(visable through my clothing) . I also had many swollen nodes in my stomach area the md said. I started in a trial and was given Rituxin and Bendamustine which caused a dangerous drop in my blood pressure. I was taken off this and spent 5 days in the hospital to get my blood pressure regulated. Then started on Ibrutinib or Imbruvica ( it is the same drug). My spleen is no longer swollen the node under my arm has gone down. Just had a ct scan to check all, I will find out about all of it at my next md appt. But, at my last appt. , Dr. said my bloodwork was excellent. I still have a tremendous amount of fatigue, but other than that am better. I had my hemoglobin drop and was extremely weak and passing out. I had 4 iron infusions and have had no more trouble with that. By the way I have 17p deletion, which makes my condition harder to treat. It doesn't respond to treatment as easily. I would highly recommend the Ibrutinib. It has worked well for me. I had some mouth sores, when I first started it, but after treatment they cleared up and I have had no more side effects. Good luck to you. Hope you find a great treatment that works for you.

Welcome @gmack @eliejose. It is great to hear from folks who have been there. Thanks for joining this discussion.
@69holding how was your appointment with the oncologist last week? @nellieblue how are you doing?

Hi Colleen -- My diagnosis is CMML - chronic myeloid monocytic leukemia. It is different from CML and CML.
It is a rare diagnosis so it is difficult to get info on possible treatments, etc. My oncologist is waiting for a trial
Study called ABT 199. But we have been waiting for months. Meanwhile I am not on any treatment and being
supported with blood tranfusions. I am concerned that the illness is probably progressing. My white counts have
been going up. My Dr says don't worry about. But, of course, I am. Any ideas?

Can you recommend a doctor at Mayo who specializes in CMML?
Thanks
Jzier

Hi @jzier, I can understand your concern. Waiting is very difficult. Please contact the Mayo Clinic appointment office to inquire about CMML specialists at Mayo. Click this link for the phone numbers at all 3 of our campuses in Minnesota, Florida and Arizona http://mayocl.in/1mtmR63

I am in the same boat in october, 2018. Could you tell me what you ended up doing?

Hi, @profrich, and welcome to Mayo Clinic Connect. You mentioned being in the same boat. Just wanted to confirm that you are saying you have CLL, and now your spleen has doubled in size?

Wondered if you'd share a bit more about your story?

This is nellieblue. I had three treatments of chemo/inmunotherapy in the fall of 2016, one month apart, without any significant side effects. Therapy was successful. My spleen is back to normal, other vital markers too. I now see my oncologist every four months for regular follow up. Doing really well in total and thanksfull. Hope it helps you.

Great, I am glad you are dong well. Could you tell me the actual drugs you used? Some people call immunotherapy chemo. So I don't know if you had only one or both. The ond thing about me is that I feel fine. I found out my spleen was enlarged when I thought I had a hernia.

I will see Hematologist Wed and then post my whole story.