I realize there are multiple issues here, but I was wanting some input.
Feb 4 I tested positive and had been sick with sore throat and bad head cold for three days. Got the Monoclonal Infusion on the 5th, and over three weeks had decreasing symptoms until totally gone. I tested Negative twelve days after the positive test, even though the symptoms continued. Then I was fine until March 4th, when I started with only a bad productive cough. On March 8th my Primary started me on Doxycycline 100 Mg twice a day for ten days. He thought it was a secondary bacterial infection, and it has gotten better daily through today. I'm coughing up some still, but much less and far less frequently; so, the antibiotic is working. I had gotten sick also prior to the Covid , during a Christmas driving trip to Washington DC. It too was a heavy cold, no fever, and I did test negative. It lasted from Christmas until end of first week in January
During the Covid my Night Sweats got worse, and when the cough recently started it got much worse (real drenching), but also continued from Covid through this cough thing during the day. It was at its worst at night, but days I sweated a good bit too.
I'm seeing Jennifer Brown at Dana Farber for my six month on March 28th. I also wanted to mention my weight has dropped from 253 (I'm six foot) to today at 225. The drop is from late last year through today. Yesterday I was 227.
I'm asking the more experienced Members what they think about this description of events. In other words have you been through all of this, in a similar time period, and still stayed on Watch and Wait; or, do you think it sounds like things are progressing a bit fast.
My other question has to do with our Immune Systems. I like many of you have pretty low numbers for the three readings IgA, IgG, and IgM. All three a good bit below the low number for Normal, but not grossly low. I know the most common cause of death with CLL is Pneumonia, and I've had Pneumonia four times lifetime, but the last was 2016. I don't want to start treatment, but if its coming up it is what it is. My question is do the Immune System Numbers come back up with treatment? I've read on this site that they usally drop when treatment starts initially. I know White Counts can come back down to near normal, but what about our Immune systems. Does the Immune numbers ultimately come back up if the treatment is working.
Thank you,
Carl
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wizzard166
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I'm very pleased to hear that your have an appointment with Dr Jennifer Brown. From what you've shared - and Dr Brown may find other factors, the only factor that you've described that could be an indication for starting treatment soon, is your weight loss. The iWCLL notes one of the triggers for starting treatment in table 2,, section 7(a) as "Unintentional weight loss ≥ 10% within the previous 6 months", so you are borderline on this, but it might be attributed to your illnesses.
With respect to the hoped for recovery of immunoglobulin counts after treatment, that can sometimes occur and I'd say it's more likely with targeted therapies compared to the older chemoimmunotherapies (BR and FCR). If your proposed treatment includes an anti-CD20 monoclonal antibody (rituximab, obinutuzumab, ofatumumab, etc), then don't expect a recovery for at least 12 months after your last infusion.
Let us know how your appointment with Dr Brown goes!
Thank you Neil. I've been down a good bit, mainly because in one and a half months I've only seen about four to five days without being sick. Granted one major segment was Covid, and that is not as countable from my standpoint as other bugs. I was however also sick during the Christmas to the week after New Years, so I do think the trigger of frequent infections might be borderline as is the weight.
In any case I value the input of all on this site, and as you know I admire your knowledge; also, you have been through the mill with our illness too.
I'm sure Jennifer won't rush to judgement, and I'll be able to feel confident with what she comes up with. One of the things I was wondering, if she is concerned about the infections and the sweats, in addition to the weight loss, is if she will want to do a bone marrow biopsy. I guess the key factor will be my RBC count and the Platelet Count.
Part of the problem with lung infections, is that invaders/infected tissues can't be "surrounded" by blood/blood components. T-cells are an important part of our defense against lung infections, as are other parts of our immune system. With CLL affecting many cells produced by bone marrow, anything significantly affecting these cells can be a problem to manage in our disease state.
I would guess that increased B-cell symptoms like night sweats could be caused by your body's attempts to deal with Covid. It may be more active CLL disease as well. I am one of those who thinks treating "sooner" rather than "later" may be better, since our treatments can depress cells affected by the CLL even more. But everyone is different, and yours signs (things measured by a lab/device or observed by others), symptoms (things that you "feel" or notice that others may not), lifestyle (resources and support available to you) are all factors that contribute to a decision to treat. Generally, if there is a suspicion of subclinical infection, prophylactic measures are taken. That's why you read about how some, but not all, the people here are on various prophylactic antibiotics, or antivirals, or given IVIG. Other support measures are available too, like G-CSF injections if our neutrophils get dangerously low, or iron or platelet infusions. If you/your doc think you are one of those having problems clearing a Covid infection, perhaps Dr. Brown can recommend/arrange supportive therapy.
Whether or not bone marrow recovers fully after treatment is highly individual. So I don't think there is any "guarantee" that treatment will give your body the ability to boost those immune globulin numbers back to normal. My personal belief, and experience, is if I haven't too badly damaged my system, and I eat/drink/sleep optimally so my body can repair itself, it will to a large extent. I personally am looking to "manage" my disease instead of attempting a SCT or CAR-T to cure unless I have no other options.
Thank you too Sofia (I know its not your name), and I value too your advanced knowledge. I've been worried about whether or not our Immune systems can rebound when treatment knocks back the WBC numbers. My guess is the Immune system remains damaged, and my worry with that is the knowledge that Pneumonia is the main cause of death with CLL patients. Since I have four Pneumonias already, and my weakness from childhood onward was always respiratory infections, recovery of immune system was a big hope of mine. I guess I'll have to utilize IVIG and other aids to battle things, if my immune numbers never recover.
IMO the targeted treatments are not as immediately, pervasively, permanently bone marrow or kidney or liver damaging as straight chemotherapy can be. So unless you are considering SCT/CAR-T or BR or other treatment involving standard chemotherapeutic agents, I think permanent impairment of bone marrow function would be rare. Unless you are in a trial where you commit to continue treatment unless certain things occur (and of course you can always quit if you change your mind midway), you can always discuss modifying/holding therapy. Like I was concerned during Venclexta induction when my neuts dropped to where I had to stop, I asked for an "extra week" at the same drug dose after the mandatory pause was successfully restarted. I wanted to see if "easing" into the higher dose would have less impact. You are seeing a really top notch specialist that is likely willing to discuss/do things like this.
People here have posted a wealth of knowledge unavailable in any "textbook" which can be used to help guide your treatments. I think if we get the CLL out of our marrow/nodes, marrow can begin to heal, and our immunity can and does recover at least somewhat. If we have other disease states, have to take other drugs or have other restrictions on our ability to eat/drink/sleep clean, do exercise, and be relatively stress-free (or at least have time/resources to combat stress) our challenges are greater. Covid thrown into the mix is a "new unknown" and no one really knows what long term effects and consequences will be.
The only other comment I would have, is that it might be helpful to look at your lifestyle/environment to see if there is any way to reduce "lung stressors" and "less than optimal lifestyle choices". I am more strict with diet, etc. when under active treatment initially. I don't know how my body will respond, so I try to think of it as a time of "being in training" to stamp down the CLL. It's a bit easier for me to plan "X weeks" to follow a stricter diet/hydration/exercise/sleep, etc. I plan out menus/meals, set timers for water reminders, incentive spirometer, take pics of skin or other oddities, etc. It's a bit boring but I think it's alerted me to minor stuff that could have hospitalized me.
A few posts on the forum have mentioned that ibrutinib in particular, can cause your immune system to recover a bit.
In my case, my numbers have steadily dropped despite the ibrutinib but still hanging in there.
I too had pneumonia 6 years ago at the end of 6 months of BR. It was the scariest thing I had ever went through until I experienced septic shock from a stubbed toe infection in a matter of 3 days. I was also taking ibrutinib at the time.
Other than using IVIG infusions, I don’t believe much else works. I believe the reconstitution of our immune system is a major unmet need.
Please monitor your o2 sats with a pulse ox and call Dr Brown immediately if conditions worsen.
She is one of the greatest CLL doctors in the world.
When you mention Septic shock, I forgot to mention that my Primary just had me get a Blood Culture. I made sure he knew about the huge increase in sweating, and he does know of course about my CLL. He agreed with me that the increased sweating could be due to my CLL or something else, and he wanted to rule out the possibility that I have an infection in my blood that could lead to Septic Shock. I expect the culture will come back negative, and I think the increased sweating is due to a combination of my CLL and the Covid and then the bacterial chest infection.
I have had instances of low O2 readings, but only on and off. My Blood Pressure has been weird, from the standpoint that I've had readings like 85/40 and 80/55, etc. My Primary said it is likely due to me being dehydrated.
I'm sorry you haven't been feeling well. You are lucky to be in the care of a top doc, as am I. When I started down this road 6+ years ago, I committed to do what he told me to do. She'll know the best path. And I'm on my second treatment round and I can tell you from experience you will feel better once on treatment (and I understand the hesitation to start, but I took a nose dive and was in treatment within 6 months of diagnosis).
Hi Carl, Like you, I too am a patient of Dr. Jennifer Brown. Prior to treatment, I had begun to see my numbers rise, my night sweats and fatigue increase and a general feeling of being unwell, though not really sick.
In November2019, I had a “routine” surgery and after having the surgery my CLL decided to really get out of whack. My platelets dipped to a low of 9,000 and I began to have tremendous leg pain. Dr. Brown had said that other than my platelets, nothing was pointing decisively to treat. She ordered a bone marrow biopsy to check the amount of infiltration in my marrow. The results were nearly 100% infiltration. Treatment began within 2 weeks of results.
Today I am feeling great, I do have my days, but they are very, very infrequent. You are in excellent hands with Dr. Brown. I remember my infusion Nurses would tell me, “I have got to reach out to Dr. Brown and let her know when something is off because she wants to know PERSONALLY anything off with her patients. You are so lucky, she watches her patients like a hawk”.
I have found this to be very true. Dr. Brown is very conservative and cautious with her patients and I believe that I have benefited from her care immeasurably.
Like you, I respiratory illness has been my weakness since childhood. A simple cold would turn into, if I was lucky, bronchitis or most likely, pneumonia. Very scary with CLL. Over the years, especially since my diagnosis, I do an element of cardio with any workout to strengthen my lungs and this has helped. I haven’t had pneumonia in 4 years.
A part of me was very resistant to starting treatment. Maybe a part of me was afraid and the other part of me felt that if I started treatment, it made my CLL real. I am grateful to be in treatment. Weirdly, I understood I was sick, but after I began treatment and started to feel better, I realized “Dang Girl, I was super sick”. I think I had just pushed through so much that I lived with it. It was such a gradual progression, I didn’t notice how sick I was. Treatment improved the quality of my life dramatically, beyond anything I could have imagined. My markers are considered “unfavorable and aggressive” and I can tell you that I am no longer freaked out by that. I have a renewed sense of hope and purpose. I wish you the best possible outcome and cannot tell you enough great things about Dr. Brown and her excellent team, they are the BEST. You are in great hands.
Hi Wizzard. Since I'm immunosupressed with GCA for nearly 10 years, 2 months after my second vaccine dose April last year, I had ImG & ImC test. My Drs said that they were very good results. Late August I caught Covid Delta and was seriously ill. Complicated with Pneumonia, Bronchitis, Leg blood clots, I was on life support for 3 weeks, and hospitalised for 15 weeks. So much for the 'good' antibody tests. It is my belief that our own immune system plays the leading role in fighting infection.
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