I was diagnosed with CLL 12 years ago while doing evaluations for worsening muscle pain for 10 years
My oncologists say and I’ve never found any literature about any correlation between CLL and muscle pain. What do any group members know about it
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I remember feeling sick and have spleen pain The months leading up to Tx with FCR in early 2018. I have been progressively developed severe fatigue, painful enlargement of spleen and vague flu like symptoms like
Headache
Whole body aches
Hot all the time despite no fever
Nausea
and worsening light headedness
anyone experiencing these symptoms with their CLL
After 8 months of literally pushing my doc to start Tx again , I finally started yesterday
I got my test dose of O and did reasonably well but increase in all pre- treatment symptoms
Had some pain in my upper chest head while sleeping not increased with exertion
This am got out of car to go in for full dose of O felt light head blacked out, fell and hit head, elbow and knee on sidewalk. Everything was evaluated like glucose, VS, etc and we’re good.Have any of you that received Obin experienced this?
If so, how long did it last
thx
Skipro
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skipro
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The times I recall asking my doctor to start treating my CLL had similar symptoms to yours, especially fatigue, but not the high body temp without a fever.
Well, interestingly I've had sxs that mirror yours...
CLL diag 2015 after finding a LNode
As W&W progressed I developed unrelenting leg ache. I would not call it pain, but it was an intrusive persistent muscle ache in legs only. Kept me awake. Unresponsive to treatments.
Stopped abruptly 3 days after 1st cycle FCR drugs started.
No explanation was ever offered.
FCR 2018.
I fainted with the first Retux infusion, like within 30min of it starting. I also had a 20min rigor so severe all my muscles hurt for 2 days. Needed iv drugs to stop it.
Both put down to allergy to Retuximab.
Took 3 days to get the infusion into me, trickled it it, literally, slower than the pump would go.
skipro are you in the US? Why I'm asking you had FCR in 2018. Most CLL experts stay clear of FCR nowadays with all the other options available. I didn't have sore muscles but I did have cramping in my legs and it became worse the last few months before treatment.
Yes to symptoms, no to blackouts. I hope to avoid that since starting OV next week.So sorry about the black out and fall. Heck of a way to resume treatment! Hope next week goes better for you.
Dear Skipro, You might want to consider a 24 hour stay for your second infusion, to avoid problems like dizziness and falls. It helped a lot, since I was pretty sick and anemic that I was inpatient for the first two infusions, plus there were no issues to cope with such as getting to and from the infusion center, walks down long hospital halls, etc.
My BP always dropped during each obinutuzumab infusion given over the six months. There is a warning about this in the package insert. I would either skip my dose of antihypertensive before each infusion, or at most, just take half of a dose, depending on my home BP before an infusion. Even so, if my BP dropped during an infusion too much, then lowering the infusion rate, bolusing with IV fluid, and drinking water improved things. By the end of six months, with venetoclax all ramped up, etc., the aches and pains from CLL were gone, labs all looked normal, and it felt like I had a body 5 or 10 years younger.
Sorry to hear about your recent start to treatment. I too have started O recently and had a lot of your symptoms before it due to how anaemic I was becoming. I have always suffered with low BP and as the infusions lower your BP there’s not much room for movement before fainting happens. Water is a life line for this, I’m constantly drinking the stuff.
That’s been my main issue with the treatment so far, I’ve also read that medications can lower BP and I’m wondering if all the preventative stuff they give me adds to the reactions.
The good news is my body has responded really well to the O infusions already, faster than they anticipated and the ache in my arm that I’ve had for years has almost disappeared.
I wish you well on your journey and hope for improvements for you each time, keep updating the nurses with your worries, they really are angels and will do all they can to help relieve the symptoms.
Sorry to hear you had a problem. I deeply sympathize. Elsewhere, I recently posted my reaction experiences with Obinutuzumab. If I had to do it all over again, I'd still do it.
The very first infusion can elicit different reactions in different people. It's not necessarily an allergic reaction. I suspect it's a cytokine reaction that affects many aspects of the autonomic nervous system which affects heart rate, circulatory dilation (and thus blood pressure), temperature regulation, and digestion.
In my case, I had sudden diarrhea and my blood pressure went down considerably. I was dizzy on my shaky walk to the toilet. I was in the hospital, so they paused the test dose to give me more saline infusion. I was feverish the next 2 days, with nothing showing up on either urine or blood culture. They gave me several inravenous antibiotics.
I skipped the other 900mL dose for Day 2. The next infusions (Day 8 and Day 15) went quite well - no effects whatsoever.
Were they checking your pulse, blood pressure, and temperature during the test infusion?
Did you have any itchiness or a think tongue or lips that might indicate an allergic reaction?
What were the pre-meds given with the infusion?
How was your hemoglobin before the infusion?
Did you receive venetoclax along with the infusion?
I hope your muscle pain issue will improve with treatment. Just because others might not have had the same symptoms doesn't mean you should dismiss it. Keep looking and whether you find a cause or not, the most important thing is to find what works for you to provide relief from symptoms.
I had severe burning pain in the back/shoulder area only and went to a chiropractor for weeks but still had pain after massage and electric pulse pads on it. I didn't know I had cancer at the time. It went away when I started treatment for the cancer. I also had weird symptoms on rituximab infusion at the start giving me pins and needle pain to touch so that people who wanted to hug me were causing pain to me that resolved itself as treatment continued. I developed allergy to alcohol swabs on my skin and had to figure it out for myself after severe blister rashes in the spot where the alcohol was swabbed prior to where the blood draw was taken, that never resolved so I avoid alcohol swabs.
I am getting ready to start my very 1st treatment next week (Rituxan). But absolutely yes to aches. My wrists, shoulders, and ankles began hurting suddenly about a month ago. My hematologists act puzzled about this. But it's a symptom that, as I said, came on suddenly and has not gone away.
Some of us get muscle pain, but I am told it's not common. I got a lot of pushback on my reported pain until I started seeing my current specialist. I also have fibromyalgia, which probably contributes to it, or at least aggravates it. I got the fibromyalgia under control pre-CLL with diet changes (can't ingest many chemicals like MSG, aspartame, preservatives), but when I got the CLL I once again had daily pain symptoms, low grade. Fatigue and low grade pain makes it difficult to motivate to do life chores.
Low blood pressure is a known reaction from large molecule infusions, even with "natural to the body" molecules like immune globulin. It's thought most if it is IgE related, although some people do develop true allergy and anaphylaxis type reactions to some of the monoclonals.
Researchers looked at some of the molecules involved in this study, which compared ibrutinib-obinutuzumab to chlorambucil-obinutuzumab:
I recall the nurses at M.D. Anderson ruling out anaphylaxis because my tongue and lips were not swollen, I was not having trouble breathing, and I was not itchy. So I assumed it was a cytokine reaction.
Here's a letter to the editors of the journal, Blood, describing a small cohort (N=38) from the GAUSS and GUAGIN trials back in 2015:
Cytokine release in patients with CLL treated with obinutuzumab and possible relationship with infusion-related reactions
Blood. 2015 Dec 10
Figure 1 shows "Effects of obinutuzumab administration on cytokine release patterns, ALC, and circulating NK cells."
IL8 and IL6 were the major cytokines involved in the reaction.
"At the midinfusion time point, patients with preinfusion ALC ≥50 × 109/L released more proinflammatory cytokines, in particular IL-6 (mean IL-6 [log10] 3.16 vs 2.41) and IL-8 (mean IL-8 [log10] 3.57 vs 2.91) than those with ALC <50 × 109/L."
They comment that IL8 is needed for obinutuzumab to function with NK and T-cells. But IL6 could be a good target to try to prevent the cytokine reaction:
"Given the known biological properties of IL-6, with elevated levels causing hypotension, vascular leakage, tissue edema, and hypoxia,16 it might prove a more appropriate target to inhibit or prevent severe IRR. Patients treated with recombinant IL-6 developed a clinical syndrome very similar to IRR, with pyrexia, headaches, flushing, and rigors."
Despite this paper, tocilizumab is not given to CLL patients regularly, it seems. It was very popular in suppressing the cytokine storm due to COVID.
The article also comments that dexamethasone inhibits IL6, too, but I wonder if the doses are large enough, or if it affects other cytokines needed for the infusion to function well, like IL8.
The paper also covers thrombocytopenia on first administration of obin, which I don't believe I personally experienced.
Risk Factors for Infusion-Related Reactions:
"Risk factors include high levels of circulating disease, higher levels of CD20 expression, the presence of splenomegaly, and bone marrow infiltration.[4,20] Many of these were also recently identified as risk factors for the development of IRR with anti-CD20 monoclonal administration in CLL.[ 21] "
Cytokine-Release Syndrome in Patients With B-Cell Chronic Lymphocytic Leukemia and High Lymphocyte Counts After Treatment With an Anti-CD20 Monoclonal Antibody (Rituximab, IDEC-C2B8)
Risk Factors Associated with the Development of Infusion-Related Reactions in Patients with Chronic Lymphocytic Leukaemia Treated with Anti-CD20 Monoclonal Antibodies: Analysis of the CLL11 Study Dataset
Blood, 6 December 2014
I've often thought that regular cytokine monitoring could shed more light on some of the symptoms we have. The reaction for me was in the first 15 minutes - too quick to measure and then react. But I had the risk factors, so maybe some dose of tocilizumab could have prevented a 2 day fever.
For what it's worth, Skipro, the Macmillan data sheet for Obinutuzumab (Gayzyvaro) states the initial infusion must be given spread over two days with resuscitation equipment to hand. Now, that cannot be unique to the UK. It also says that the infusion must be preceded with a benzodiazepine and IV paracetamol (I believe its trade-name in the US is Tylenol)
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