1. < Blood Cancers & Disorders

CLL treatment that concentrates in shrinking the spleen without undergoing chemo

Posted by nellieblue @nellieblue, May 7, 2016

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.

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gmack | @gmack | May 21, 2016

@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

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1 reply
jzier | @jzier | May 22, 2016
In reply to @colleenyoung "Hi @bjsdancer, I'm tagging @rcand10s who wrote about being diagnosed with Primary Myelofibrosis in 2013. I'm..." + (show)
@colleenyoung

Hi @bjsdancer,
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?

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I have CMML. I was diagnosed 5 years ago. <br>I did four years of IV chemo - Dacogen. Then did 6 months of trial study drug Tosedostat. I had negative reactions to Tosedostat and was taken off the study in February 2016. <br>Currently not doing any treatment. Blood transfusions every 2 weeks for low hemoglobin. <br>I would like to find out what studies - if any - are available at Mayo. I am also wondering if there are any immunotherapy studies that may help with this illness. <br>Thx for your help. <br><br>

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Moderator
Colleen Young, Connect Director | @colleenyoung | May 22, 2016

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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7 replies
jzier | @jzier | May 22, 2016
In reply to @colleenyoung "Welcome to our CLL/CML group on Connect, @jzier. You can easily search for open clinical trials..." + (show)
@colleenyoung

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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Hi Colleen< br>Thank you for your response.
Please note that my illness is CMML.
The leukemias that you list - CLL & CML are different illnesses. Do you have info that refers to CMML?

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Moderator
Colleen Young, Connect Director | @colleenyoung | May 23, 2016
In reply to @colleenyoung "Welcome to our CLL/CML group on Connect, @jzier. You can easily search for open clinical trials..." + (show)
@colleenyoung

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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My apologies @jzier. Here's info specific to chronic myelomonocytic leukemia (CMML) from Cancer Research UK http://www.cancerresearchuk.org/about-cancer/cancers-in-general/cancer-questions/chronic-myelomonocytic-leukaemia-cmml This article from the National Cancer Institute for health professionals http://www.cancer.gov/types/myeloproliferative/hp/mds-mpd-treatment-pdq

Currently there is a phase I/II clinical trial open for enrollment at Mayo Clinic for CMML. See details including eligibility criteria here: http://www.mayo.edu/research/clinical-trials/cls-20149895

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jzier | @jzier | May 23, 2016
In reply to @colleenyoung "Welcome to our CLL/CML group on Connect, @jzier. You can easily search for open clinical trials..." + (show)
@colleenyoung

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?<br><br>

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lynnkay1956 | @lynnkay1956 | May 23, 2016
In reply to @katemn "Hello Nellie, I can only speak from dealing with my husband experience. He was diagnosed at..." + (show)
@katemn

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:
http://www.fda.gov/Drugs/InformationOnDrugs/ApprovedDrugs/ucm385878.htm
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

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you can check out all the clinical trails at http://www.cancer.gov/about-cancer/treatment/clinical-trials/search

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bjsdancer | @bjsdancer | May 28, 2016
In reply to @gmack "@nellieblue I have had cll for 71/2 years. In Nov 2014 I started in a clinical..." + (show)
@gmack

@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

Jump to this post

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.

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bjsdancer | @bjsdancer | May 28, 2016
In reply to @colleenyoung "Hi @bjsdancer, I'm tagging @rcand10s who wrote about being diagnosed with Primary Myelofibrosis in 2013. I'm..." + (show)
@colleenyoung

Hi @bjsdancer,
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?

Jump to this post

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.

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Moderator
Colleen Young, Connect Director | @colleenyoung | May 31, 2016
In reply to @colleenyoung "Welcome to our CLL/CML group on Connect, @jzier. You can easily search for open clinical trials..." + (show)
@colleenyoung

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?

Jump to this post

@jzier, please contact the appointment office to inquire about CMML specialists at Mayo. Here are the numbers and online form http://mayocl.in/1mtmR63

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