Mayo Clinic Connect
I have had CLL for 12 years, without need for treatment. Now my spleen has double in size from normal and I would like to know if anyone with CLL has had any treatment that concentrates in shrinking the spleen without undergoing chemo therapy.
Welcome to our CLL/CML group on Connect, @jzier.
You can easily search for open clinical trials at Mayo Clinic using this link http://www.mayo.edu/research/clinical-trials I like this webpage from Cancer Research UK for details about biological therapies (immunotherapy) for CML http://www.cancerresearchuk.org/about-cancer/type/cml/treatment/biological-therapies-for-chronic-myeloid-leukaemia Keep in mind that it is a UK site so some brand names may differ in the US.
Has your oncologist suggested any other clinical trials that may be an option?
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Thank you for your speedy response. Can you also tell me if there are any specialists dealing with this illness at Mayo?
Hello Nellie, I can only speak from dealing with my husband experience.
He was diagnosed at Mayo Clinic, Rochester MN in 1996 .. was monitored consistently through the years with blood tests and various treatments. In early 2014 we were told that my husband was now Stage 4 .. BUT that a new chemotherapy was going to be approved by the FDA that “could potentially be life changing”! WOW! We left telling ourselves “No doctor is going to use those words unless it really could be potentially life changing!
Well the Doctor did NOT put my husband on the new drug “Imbruvica 140mg 3 capsules 1x day” until November 2014 .. we figured he wanted to see what the side effects turned out to be etc.
For my husband Imbruvica has been wonderful! The lymph nodes in his neck that were VISABLE in his neck are GONE!! The doctor says he can’t even FEEL his enlarged lymph nodes anymore! NO .. HE WILL NEVER GO BACK TO STAGE 3 .. BUT it is now May 2015 and he is going really well .. going to grandkids sports .. we are traveling the world .. living our lives and having fun. What more can I say. NO ONE can say what tomorrow can bring .. but Imbruvica has been GOOD to us. I would at least ask your doctor if you are a candidate for it.
Good luck on your journey .. Hugs to you! Katherine.
Info on the drug:
On February 12, 2014, the U. S. Food and Drug Administration granted accelerated approval to ibrutinib (IMBRUVICA, Pharmacyclics, Inc.) for the treatment of patients with chronic lymphocytic leukemia (CLL) who have received at least one prior therapy. (He had been on Rituxinab for six months and had not been effective) 11/14
you can check out all the clinical trails at http://www.cancer.gov/about-cancer/treatment/clinical-trials/search
Liked by Colleen Young, Connect Director
@nellieblue I have had cll for 71/2 years. In Nov 2014 I started in a clinical trial. At that time my spleen was enlarged and my lymph nodes were swollen. I was given a targeted therapy in a series of infusions (no side effects) called rituximab and since then three pills every day called ibrutinib. The swelling in my spleen and lymph nodes went away. My white cell count goes between 12 to 14 thousand. At one point before treatment it was over 200 thousand. I am not sure if these drugs are FDA approved.I hope this helps you. gmack
Hi Nellieblue, My husband has been on Tamsulosin for his Myelofibrosis two capsules a day for about six weeks. Spleen very enlarged, lots of weight loss and fatigue. Spleen has not reduced in size so he is going to be put on ruxolitnib if we can get financial aid. The cost of this drug is out of sight. Will also ask our doctor about ibrutinib which you say has helped you. White cell count was 30,000 but that has gone down.
I’m tagging @rcand10s who wrote about being diagnosed with Primary Myelofibrosis in 2013. I’m hoping Richard will return to share with you.
In the meantime, you may wish to read about the condition on NORD (National Organization of Rare Diseases) which was prepared with leading expert Ayalew Tefferi, MD, Division of Hematology, Mayo Clinic. You can watch it this video by Mayo Clinic hematologist Dr. Ruben Mesa the latest research and treatments: http://youtu.be/OEhRn2e-7c4 @rcand10s.
I’ll keep looking for other members to Connect you with BJ’s Dancer. Are you and your husband dancers?
Thanks Coleen for your input. My husband’s disease is not considered leukemia but a disease of the bone marrow. Enlarged spleen, weight loss and fatigue. He has been on Tamsulosin for six weeks for his myeloid myelofibrosis but no reduction is spleen size. Possible addition of ruxolitnib but cost is out of sight. Clinical trials or financial aid a possibility. Yes I am a dancer, singer, actress but years ago. My husband and I were very active in musical theater, thanks for asking.
@jzier, please contact the appointment office to inquire about CMML specialists at Mayo. Here are the numbers and online form http://mayocl.in/1mtmR63
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?
Liked by tonistable
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?
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.
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