Is or Has Anyone experienced extreme swelling of soft tissue normally in one area but sometimes two that lasts for approximately 5-7 days before moving to another area normally on peripheral parts??
In March 2020, commenced clinical drug trial ACE-CL-311 Amplify with 14 Cycles of Acalabrutinib and Venetoclax, from Cycle 1 started getting joint pain and inflammation, which continued to get worse during the trial and also after I had completed the 14 cycles of A&V, and has sadly continued to a point where my phalanges joints of my fingers are getting deformed.
During the trial I was advised to take paracetamol, then onto ibrufen, then codeine and paracetamol, upto Butec Transdermal Patch's Burrenorphine, which I hate being on.
I have always done yoga and cold water therapy to help, where sometimes I can come off my patches, but then get flare ups of pain and inflammation so have to go back on them. My joints do not like heat.
Even though I have always told and documented this problem side effect to my study team, I have only recently been referred to a Consultant Rheumatologist to start investigations. He believes it maybe osteoarthritis and is seeing this with patients on immunotherapies.
However along with the above side effect starting October 2022, last year my lower left forearm swelled so much that I was referred to A&E as the Doctor thought it could possibly be a clot, lymphedema, or cellulitis. After bloods were taken and analysised, nothing was found. And since then I have regular attacks of these swellings, which are getting debilitating, so I started taking photos and cataloging these.
The areas can be a finger tip, fingers, palm area of hand, top of hand, lower fore arm, knee area normally above, lower limb, around ankle or feet pads. There appear to be no pattern.
When I am having an attack the area will start to hurt, get hot and red and will painfully start to swell for a few days and then slowly go. Now it will go to another site and is getting more frequent.
My Oestapath has never seen this before and says it's not in the joint. My Clinical Study Team has never come across this either.
Has anyone experienced this and if so what is it and what was given to help please?
Thanking you in anticipation.
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Sorry to hear about all your problems. My swelling and pain was slightly different to yours, and mine was never red or hot but painful swollen ankles that moved around and then to my hip. After seeing an Orthopaedic surgeon and having an MRI I was initially diagnosed with complex Regional Pain Syndrome and after reading up I started taking Amitriptyline, but that didn’t help. Eventually they said it was bone marrow oedema, which seemed to describe my symptoms. They don’t know why it starts or goes as mine has 🤞but rest and physiotherapy help. Apart from the physio I am lucky to have a friend who is an Osteopath who also massaged me.
It might be worth seeing if Amitriptyline helps and I used a massage oil with arnica that also helped.
It’s no fun doing the rounds of ‘ologists ‘ and there is also immunology that may help if others fail.
Thank you so much for coming back to me and glad that yours has gone and fingers crossed stays that way, I will suggest that possibility of Oedema to my Haematologist when I see her tomorrow. Thanks again.
I've been to see my Rheumatologist today and was diagnosed with Palindromic Rheumatism and they have to be careful what drugs they use as it can kick off the CLL again so have been prescribed Hydroxychloroquine / Quinoric and hopefully having these for 6 months initially will dampen the inflammation and stop the attacks.
Something I have just had to look up as I have never heard of it, but great that you have been given a diagnosis and a treatment plan. From my quick read before I replied to you it seems well controlled with medication, so hopefully will yours be.
I am so sorry to hear you are dealing with this . In your post you mention that you have always done yoga and cold water therapy for managing your joint issues. Did you have any joint issues prior to initiating the A&V?
There have been some recent findings correlating arthritis and immunotherapy medications. I am guessing that if you had issues before, even low level, that it could be exacerbated by the immune system stimulation that these meds provide.
Here are an article on the subject. I hope you can get the relief you need soon
Thank you for replying, not really these sort of problems prior to going on the trial, just getting older and stiffer and too much running and squash, so was reducing my cv exercise to more kinder ones, like yoga for last 15 years. But did start cold water therapy and sea swimming to reduce the inflammation whilst on the trial and immunotherapy tablets and have continued this as definitely helps, but I'm trying to find why the weird swelling? thanks again for reaching out.
I've been to see my Rheumatologist today and was diagnosed with Palindromic Rheumatism and they have to be careful what drugs they use as it can kick off the CLL again so have been prescribed Hydroxychloroquine / Quinoric and hopefully having these for 6 months initially will dampen the inflammation and stop the attacks.
Hello! Thank you for letting us know ! I hope that now that they have determined the root cause, that you can find some relief with the treatments they have offered
I am placing the definition here for anyone else who may not know what the diagnostic terminology means.
"Palindromic rheumatism (PR) is a syndrome characterised by recurrent, self-resolving inflammatory attacks in and around the joints, consists of arthritis or periarticular soft tissue inflammation. The course is often acute onset, with sudden and rapidly developing attacks or flares. There is pain, redness, swelling, and disability of one or multiple joints. "
I developed some swelling at the back of my head that affected my trigeminal nerve early in my ACE-CL-311 trial which took over a month to resolve. Some core biopsies were taken and were inconclusive in my opinion. Later I developed a painful lump behind one knee. That eventually resolved too. It may be that these are a side effect of the treatment drugs, but the incidence seems fairly low, so it's hard to know if they would have happened anyway.
In general, you need to be very careful about taking NSAIDs like ibruprofen, as they can cause or worsen a drop in your platelet counts and neutrophils onlinelibrary.wiley.com/doi... My CLL specialists recommend paracetamol/acetaminophen (Panadol/Tylenol/APAP) for pain relief, not ibruprofen for this reason.
I took Excedrin (acetaminophen + aspirin + caffeine) to manage aches and pains pretty regularly during W&W. It also manages chronic headaches. My oncologist grumbled about it.
Once I started treatment, my CLL specialist was pretty clear I needed to stop with that. So I now take just the acetaminophen. I don't find it very effective for pain to be honest. But my platelets and neutrophils have held up OK.
Your oncologist was right to flag your use of aspirin as being risky. You don't want gastrointestinal bleeds if your platelet counts plummet, which is not uncommon during treatment. My counts dropped from the low 50s to under 30 before recovering.
"The main disadvantage of aspirin use is the risk of serious gastrointestinal bleeding, which can occur even at low doses pubmed.ncbi.nlm.nih.gov/274... A 2021 clinical trial gut.bmj.com/content/70/4/717 that enrolled 19,114 participants aged 70 years or older found that aspirin increases the risk of significant gastrointestinal bleeding by 60%."
Interestingly, as covered in medicalnewstoday.com/articl..."H. pylori eradication was associated with a significant reduction in the risk of hospitalization for ulcer bleeding." and eliminating a H. pylori infection reduced that risk.
Thank you so much for coming back to me, the joint pain and inflammation kicked in slowly from cycle 1, but once stopping the trial drugs in May 2021, it still continued to get worse. The swellings started October 2022, however I've been to see my Rheumatologist today and was diagnosed with Palindromic Rheumatism and they have to be careful what drugs they use as it can kick off the CLL again so have been prescribed Hydroxychloroquine / Quinoric and hopefully having these for 6 months initially will dampen the inflammation and stop the attacks.
This may be gout. I had several really painful episodes in earlier phases. never occurred to me, or docs that this was the problem. Came across this in a medical quiz, and in retrospect perfectly obvious. Despite being in medical field, and knowing that excess Uric acid was generated, did not, embarrssingly, make the connection.
May want to mention posssibility to docs. Allopurinol may be useseful.
Thanks for coming back to me, I've been to see my Rheumatologist today and was diagnosed with Palindromic Rheumatism and they have to be careful what drugs they use as it can kick off the CLL again so have been prescribed Hydroxychloroquine / Quinoric and hopefully having these for 6 months initially will dampen the inflammation and stop the attacks.
My husband's RA flared several times while in immunotherapy, We found relief by mixing traditional medicine with homeopathic options and nutrition. The RA Dr. had my husband on steroids and antibiotics for months. I removed gluten from his diet and packaged foods. I added smoothies with anti inflammatory foods and beet root powder to his daily routine. Added juice in the A.M. to treat the inflammation, evening juice to treat his immune system. In addition to medications from Dr's. We added liquid silver 1x daily, also a dosage of liquid mistletoe into his juices. Wormwood and Iron pills daily to boost red blood cells. We also added a higher end dose of Tumeric & Curcumin for the inflammation prevention.
Thank you for coming back to me, I've been to see my Rheumatologist today and was diagnosed with Palindromic Rheumatism and they have to be careful what drugs they use as it can kick off the CLL again so have been prescribed Hydroxychloroquine / Quinoric and hopefully having these for 6 months initially will dampen the inflammation and stop the attacks.
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