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.
Hi @nellieblue. Welcome to Connect! I’m glad you found our community. What course of action did your doctor recommend after finding out that your spleen had grown? Are you nervous about the idea of undergoing chemo? I’m tagging @ikampel2, @katemn, @rafe61,@KathleenWarren and @chucky2g who have posted about CLL in the past and may have some insights about treatment options. Also, here is what Mayo Clinic says about treatment: http://www.mayoclinic.org/diseases-conditions/chronic-lymphocytic-leukemia/diagnosis-treatment/treatment/txc-20200796. Hope this helps!
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All I can say is that I was never treated for CLL, My CLL turned into other Blood diseases and for that I had chemo.
Fortunately for me, my body has not undergone any major changes such as lymph node or spleen increases.
On the negative side however, I contracted ITP (low platelet count), the after a very stressful situation I contracted MDS (Low blood counts in all three blood lines – white for infections, red for anemia and platelets for blood coagulation).
For MDS I had to have a port put in because my chemo was to be 5 days a month instead of the one day a month I had for ITP.
Well, I contracted either a Staph or MRSA infection and had to be hospitalized for 5 days.
Chemo’s biggest complaint by all patients regardless of which cancer or chemo they get is fatigue. In my case my Poly-Neuropathy (both feet and legs, not from diabetes) was affected so much that I could hardly walk without pain, plus the fatigue.
What I do know is that if chemo is not an option, they can remove the spleen, it really doesn’t affect your health. But I am not a Doctor, so you’ll have to talk to a real Oncologist.
Liked by Jackie, Alumna Mentor
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
Liked by Colleen Young, Connect Director, Jackie, Alumna Mentor
@nellieblue according to the American Cancer Society (and other sources)
Have you discussed surgery or radiation to shrink the spleen with your cancer care team?
I have had chronic lymphocytic leukemia for 9 years, been in a watch and wait/State 0, every 6 months my white count is up and now my platlets are dropping 90 points every 6 months. white count is 35.2 and platelets are 190, so I am concerned the leukemia is progressing and wonder if I will have to have treatment soon?
Welcome to Connect @69holding.
I moved your message to this discussion thread so that you could connect with other members talking about CLL. Like you @nellieblue has had CLL for a long time (12 years) and not needed treatment. @KathleenWarren @ikampel2 and @katemn may also be able to share experiences to help answer your questions. When is your next 6 month check up?
Hello 69, If you do get to the point of treatment .. ask your Oncologist about the newly approved chemotherapy ‘IMBRUVICA”. My husband was diagnosed in 1996 but is now Stage 4 .. is doing really well with: Imbruvica 140mg 3 capsules 1x day since 11/12/14 for his CLL.
He went from having his lymph nodes showing up in photos .. to now his doctor can’t even FEEL THEM!! Almost no side effects .. bruising and some fatigue but minor!! Frankly the chemo has been a “piece of cake” .. we are traveling .. living our lives and having fun! He is 75!
Hello 69, you asked about hair lose. I just asked him. Keep in mind .. he does not have a full head so I asked him if he noticed hair loss when he took a shower .. he said absolutely not! And I would say he has nice hair for his age! Each person is different and their bodies react differently .. but it has been great for him. Also remember that you can’t go on it until you have tried one other treatment .. at least that was true when he started. Good luck! Sending you a hug!
Liked by 69holding
Thank you Katemn this give me lots of hope–I so appreciate you letting me know your husband’s experience with Imbruvica, I have heard lots about it. I go next week to my Oncologist so I will see what he says. Did your husband lose his hair? Being a woman just aksing?? Thanks again.
My husband has been diagnosed with myeloid Metaplasia with Myelofibrosis . White count was 30,000 and his spleen is also very enlarged. He is on Tamsulosin 0.4mg capsules 2XC a day. It has been almost a month and not any improvement. He is very tired, fatigued, no appetite as the spleen is pressing on his stomach making him feel full after eating very little. Lots of weight loss. Surgery to remove the spleen not advisable as his age is 83. There is drug Ruxolitinib to consider but cost is way too expensive. Does anyone else have this disease? It effects the bone marrow. Not considered CLL.
Liked by susieQ
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?
@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
Liked by Colleen Young, Connect Director
I have CMML. I was diagnosed 5 years ago. 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. Currently not doing any treatment. Blood transfusions every 2 weeks for low hemoglobin. 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. Thx for your help.
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?
Hi ColleenThank 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?
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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