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sofaramnotdead
@sofaramnotdead

Posts: 2
Joined: Aug 31, 2017

CLL

Posted by @sofaramnotdead, Aug 31, 2017

I have CLL. I had 5 chemo treatments which ended 13 months-ago, and so far, I’m still in remission. Has anyone else here been in remission from
CLL? Thanks.

REPLY

I am so happy to hear this, I believe others are in remission. I have been on the watch n wait program since 2013…
Today I have an appointment with my oncologist, hopefully I will continue with this even though my WBC count has been going up.
Take care,
Cindy

I was treated twice with rituxan only for spleen related pain in 2016. I had frequent infections and mouth sores for 10 years prior to diagnosis in 2014. Heavy night sweats began late in 2013 and I had to cut back my work schedule to part time since early 2013. I was diagnosed as having CLL stage 2, but with some late stage features, including b-grade symptoms and low gamma globulin and very low immune globulin A, M and G. At time of diagnosis until after the first round of rituxan infusion, LDH very high, AST high and rising, frequently elevated granulocytes (neutrophils, basophils, eosinophils and immature granulocytes), monocytes almost always high. Hemoglobin ranged from 11s to about 13. First set of infusions reduced size of spleen. above the diaphragm lymph nodes much reduced after 2nd infusion compared to CT taken before 1st infusion. There was a huge improvement in symptoms after the 2nd set of infusions. No sino-respiratory infections requiring antibiotics and no antibiotics ordered for almost 6 months, night sweats very infrequent and lighter. Worsening symptoms since March 2017, more frequent and heavier night sweats, increased fatigue, infections requiring antibiotics every 6 to 8 weeks, etc. I switched care from a cancer care clinic in Minneapolis to Mayo in Rochester in late 2016. Because of worsening symptoms, I am planning to start ibrutinib very soon. The first hematologist assigned to me remarked that I had an early stage CLL with some late stage features, but insisted that the b-grade symptoms and low immuneglobulins couldn’t be CLL related, because you don’t see that in stage 2. The low immuneglobulins were attributed to a very rare genetic disorder, Common Variable Immune Defienciency, not secondary to CLL. What about LDH, AST and white blood counts. Apparently attributed to alcoholism. I had reported light and infrequent consumption of ETOH, but so do alcoholics. But LDH and AST dropped to low-normal levels, white counts normalized after the rituxan treatment.

@dougmann

I was treated twice with rituxan only for spleen related pain in 2016. I had frequent infections and mouth sores for 10 years prior to diagnosis in 2014. Heavy night sweats began late in 2013 and I had to cut back my work schedule to part time since early 2013. I was diagnosed as having CLL stage 2, but with some late stage features, including b-grade symptoms and low gamma globulin and very low immune globulin A, M and G. At time of diagnosis until after the first round of rituxan infusion, LDH very high, AST high and rising, frequently elevated granulocytes (neutrophils, basophils, eosinophils and immature granulocytes), monocytes almost always high. Hemoglobin ranged from 11s to about 13. First set of infusions reduced size of spleen. above the diaphragm lymph nodes much reduced after 2nd infusion compared to CT taken before 1st infusion. There was a huge improvement in symptoms after the 2nd set of infusions. No sino-respiratory infections requiring antibiotics and no antibiotics ordered for almost 6 months, night sweats very infrequent and lighter. Worsening symptoms since March 2017, more frequent and heavier night sweats, increased fatigue, infections requiring antibiotics every 6 to 8 weeks, etc. I switched care from a cancer care clinic in Minneapolis to Mayo in Rochester in late 2016. Because of worsening symptoms, I am planning to start ibrutinib very soon. The first hematologist assigned to me remarked that I had an early stage CLL with some late stage features, but insisted that the b-grade symptoms and low immuneglobulins couldn’t be CLL related, because you don’t see that in stage 2. The low immuneglobulins were attributed to a very rare genetic disorder, Common Variable Immune Defienciency, not secondary to CLL. What about LDH, AST and white blood counts. Apparently attributed to alcoholism. I had reported light and infrequent consumption of ETOH, but so do alcoholics. But LDH and AST dropped to low-normal levels, white counts normalized after the rituxan treatment.

Jump to this post

Hi, it’s January 18, 2018. Are you still alive, Dougmann? I hope so! If so, how high did your WBC get?

As of today, my CLL is still in remission. Mayo is giving me monthly immuneglobulin infusions and I have been taking a couple of antibiotics for over 6 months which may help.
However, I have a bad cold that is getting worse by the day and Rochester is very cold. If there are any nurses or physicians out there, is my immune system going to be able to reverse things?

Hello
As of January 29 my hemoglobin and platelets are below the normal low, I went for a second opinion with a CLL specialist at Froedtert in Milwaukee. If my numbers continue to lower he said I will need to start treatment….FCR for 6 months or Ibrutinib 3x a day forever. Does anyone have any thoughts, pros or cons of the two treatments?

I have CLL and thus far just in "wait and watch", but your information is very interesting. Thank you !

@ssid

Hello
As of January 29 my hemoglobin and platelets are below the normal low, I went for a second opinion with a CLL specialist at Froedtert in Milwaukee. If my numbers continue to lower he said I will need to start treatment….FCR for 6 months or Ibrutinib 3x a day forever. Does anyone have any thoughts, pros or cons of the two treatments?

Jump to this post

@ssid, you mentioned quite some time ago that you were going to begin treatment for your CLL. If you are comfortable sharing, how are you doing with your FCR and Ibrutinib treatments? How are you feeling?

Hi Adriano; I have CLL too and my last treatment was last May through October; I'm in remission for now; how are you? and are you having issues staying healthy with your immune system? I need advice on how to rebuild mine; I keep getting sick; and my name is Mary.

@ssid

Hello
As of January 29 my hemoglobin and platelets are below the normal low, I went for a second opinion with a CLL specialist at Froedtert in Milwaukee. If my numbers continue to lower he said I will need to start treatment….FCR for 6 months or Ibrutinib 3x a day forever. Does anyone have any thoughts, pros or cons of the two treatments?

Jump to this post

I am still wait n watch…my treatment will be Ibrutinib since I am 17p deletion. My numbers are slowly decreasing with a rising WBC of 60,000. I have two large lymph nodes on my left jawline, which are not painful, that I am always trying to hide. My oncologist said the decision is mine as to when I want to start…

@dougmann

I was treated twice with rituxan only for spleen related pain in 2016. I had frequent infections and mouth sores for 10 years prior to diagnosis in 2014. Heavy night sweats began late in 2013 and I had to cut back my work schedule to part time since early 2013. I was diagnosed as having CLL stage 2, but with some late stage features, including b-grade symptoms and low gamma globulin and very low immune globulin A, M and G. At time of diagnosis until after the first round of rituxan infusion, LDH very high, AST high and rising, frequently elevated granulocytes (neutrophils, basophils, eosinophils and immature granulocytes), monocytes almost always high. Hemoglobin ranged from 11s to about 13. First set of infusions reduced size of spleen. above the diaphragm lymph nodes much reduced after 2nd infusion compared to CT taken before 1st infusion. There was a huge improvement in symptoms after the 2nd set of infusions. No sino-respiratory infections requiring antibiotics and no antibiotics ordered for almost 6 months, night sweats very infrequent and lighter. Worsening symptoms since March 2017, more frequent and heavier night sweats, increased fatigue, infections requiring antibiotics every 6 to 8 weeks, etc. I switched care from a cancer care clinic in Minneapolis to Mayo in Rochester in late 2016. Because of worsening symptoms, I am planning to start ibrutinib very soon. The first hematologist assigned to me remarked that I had an early stage CLL with some late stage features, but insisted that the b-grade symptoms and low immuneglobulins couldn’t be CLL related, because you don’t see that in stage 2. The low immuneglobulins were attributed to a very rare genetic disorder, Common Variable Immune Defienciency, not secondary to CLL. What about LDH, AST and white blood counts. Apparently attributed to alcoholism. I had reported light and infrequent consumption of ETOH, but so do alcoholics. But LDH and AST dropped to low-normal levels, white counts normalized after the rituxan treatment.

Jump to this post

Hi, I am interested in learning more about your infusions; are they beneficial in helping your immune system gain enough strength to fight infections? I was dignosed yesterday with pleurisy in my right lung after being in the hospital two weeks ago with pneumonia. I too have CLL.

@pokeyspride2002

Hi Adriano; I have CLL too and my last treatment was last May through October; I'm in remission for now; how are you? and are you having issues staying healthy with your immune system? I need advice on how to rebuild mine; I keep getting sick; and my name is Mary.

Jump to this post

My suggestion is to get orientation from a nutritionist who specializes in hematology care. The right nutrition may be as important as prescriptions.

Bless you and giant hugs for your immune system and RBC's, I bet they are both doing a happy dance out of this world!!!! I am for you!!

Thank you Helen!

@ssid

Hello
As of January 29 my hemoglobin and platelets are below the normal low, I went for a second opinion with a CLL specialist at Froedtert in Milwaukee. If my numbers continue to lower he said I will need to start treatment….FCR for 6 months or Ibrutinib 3x a day forever. Does anyone have any thoughts, pros or cons of the two treatments?

Jump to this post

Well, I started taking Imbruvica, 420 mg, on July 6th, 2018. Only two days where I felt nauseous with a headache. My wbc # peaked at 100,000 and 78,000 as of last week. My hemoglobin and platelets are also low which they are monitoring this week….blood draw in two hours. Hopefully the numbers will come up on their own. If not I will take a lower dose or stop for awhile…
The anxiety I have with all of this is crazy at times.

@ssid

Hello
As of January 29 my hemoglobin and platelets are below the normal low, I went for a second opinion with a CLL specialist at Froedtert in Milwaukee. If my numbers continue to lower he said I will need to start treatment….FCR for 6 months or Ibrutinib 3x a day forever. Does anyone have any thoughts, pros or cons of the two treatments?

Jump to this post

@ssid, thank you for updating us. You had mentioned that you were previously on wait and watch protocol, but your numbers must have changed. I think anxiety with these treatments and diagnosis is understandable. How did your blood draw go?

I supposem but I do not know about cases. But it is very good good to read that the CLL in your case is in remission!

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