tumor necrosis

[Islandjewel23]

Thanks for comments re SE on Calquence. I’ve been on it a week and am also having headaches, especially in middle of night, joint pain and fatigue/ fuzzy brain. I’m on Allopurinol to help with tumor necrosis (cancer cells dying off at first and could affect kidneys because of uric acid buildup-Allopurinol is protective.) Wondering if the tumor necrosis is cause of some SE’s?

Saw some info about Paxlovid and Calquence, and needing to stop Calquence if Paxlovid needed. Also if people found immunity worse on Calquence? I have to travel in 3 weeks. Worried about Covid and getting a plan in place, and if I’ll still feel crappy. Thanks for any help!

[Newdawn Administrator]

Hi Islandjewel,

Having been on the ramp up for Venetoclax with its very significant potential for TLS, I think there is a big distinction between the term ‘necrosis’ and ‘tumour lysis syndrome’. I’ve never heard it called necrosis in that context though I suppose the major flush out could be construed as cell death.

Necrosis is the death of body tissue. It occurs when too little blood flows to the tissue. Tumour lysis syndrome (TLS) is an oncologic emergency that is caused by massive tumour cell lysis with the release of large amounts of potassium, phosphate, and nucleic acids into the systemic circulation. It can cause acute kidney injury and Allopurinol is used as a preventative medication.

I was hospitalised on 3 occasions as a precaution due to excessive levels of phosphate during the Venetoclax ramp up (I was also on Ibrutinib). I can’t recall any side effects that alerted me to the process taking place however. Obviously during this time immunity is more compromised particularly if neutrophil levels fall.

I think you need to consult your specialist about any precautions needed for travel including a Covid plan to put your mind at rest.

I’ve just noticed that this is your first post having just joined us. A warm welcome to you! 😊

Good luck,

Newdawn

[Islandjewel23 in reply to Newdawn]

Thanks Newdawn, and of course you’re right! Shows my brain is not up to snuff! I’m a retired oncology nurse and tumor necrosis factor is a totally different thing! Thanks for welcoming me. I stumbled on this and am glad I did, already I’ve gotten validation that my symptoms are “normal.” Noting that most posts are over a year old, so I wondered if this as an active site. Thanks for your response!

[Newdawn Administrator in reply to Islandjewel23]

Oh it’s a very active site but unfortunately your other response was to a post that is over 6 years old. The subject matter remains relevant however even if a couple of the contributing members on that post are sadly no longer with us.

It sounds as if all is progressing normally for you though to be honest, when starting treatment, it’s entirely normal to attribute every twinge, ache or pain to treatment. I found keeping a treatment diary very useful.

Regards,

Newdawn

[Islandjewel23]

Hi Newdawn, thanks for the response. Yes, a diary is in hand! I do have a couple questions: I know that Calquence is supposed to make me feel better (per my hem/onc) but wondering when I might experience that? If my lymph nodes decrease and night sweats and fatigue lessen that would be good. But if a side effect is a decreased immune system, (which would be good to lower my WBCs and Lymphocytes I guess) then wouldn’t all of my counts decrease? I have new anemia and am wondering how long before I might see a resolution of that. I am very fatigued and unsure if that is related to the anemia or a side effect of Calquence which I started 8 days ago. So basically, when is a reasonable time to expect to see some positive changes in my counts on Calquence? I’m due for more labs in 7 days. Sorry about the convoluted questions, and Thanks!

[Gampo]

Hi, your symptoms are similar to my experience when I started Calquence 3 months ago. I had a count of 100, v enlarged spleen, and was exhausted most of the time (I’m 50). The first month of Calquence and Allopurinol was tough( headaches, bruising, even more exhausted, joints a bit stiff etc.) At my first checkup 4 weeks in, my count had doubled but that was seen as normal. I was told we’d know if the treatment was working by 3 months and that’s exactly what has happened. My count has halved and my spleen is reducing. The headaches only last about a month (others on this site have said the same thing), the exhaustion still comes and goes but it’s definitely better than those first few weeks - I took a week’s break from work at 5 weeks in and have not felt as exhausted since then. You mention lymph nodes, mine have been swollen under one arm for some years and I didn’t notice any change when I started treatment but the first week I was off Allopurinol- my oncologist kept me on it for 4 weeks - that arm got a little swollen and my hand was very swollen. I was told to persevere and it would right itself, which it did after 2 weeks, but the hand remains slightly swollen. I checked on this site to see if anyone else had this experience but it seems not, so I guess my reaction was rare. As for the immune system, I have caught two colds so far this year, which is unusual, but the person I live with caught them first and passed them to me! So it’s hard to know if my immune system is any different or not. What I did notice was I recovered better than the colds I’ve had over the last 2 years and that has to be connected to the lowering of my WBC, so I’m very encouraged by that.

I hope this helps to reassure you. The first month is a bit tough and disquieting as symptoms can change every week, but things settle down after the first month and it’s so great to have a treatment that has v modest side effects - so much better than the treatments available when my Mum had CLL ten years ago.

Good luck and I hope you can still enjoy your break. Just be kind to yourself and take it a easy, things will get better soon

[Islandjewel23 in reply to Gampo]

Hi Gampo, thank you, this gives me hope. Thanks for listing the sx’s you had. That helps to know mine aren’t strange. Just started with mucositis last night and my fatigue is profound. (My tea cup is sooo heavy today!) I’ll just wait it out. Hope you’re well!

[Nucleusman]

Paxlovid not used in YK. Try another drug?? I meant UK

[SERVrider]

I was treatment-naive and started on acalabrutinib (Calquence) in June 2020 before it was licensed in the UK. Within a month my spleen had shrunk back to normal size, my cervical lymph nodes had shrunk away (my wife had been calling me Jabba the Hut) and the fatigue went. Yes, the bruising is still there and I take allopurinol to address gout in my left foot. My only adverse effect is little blood-blisters that spring up in the mouth and just as quickly disappear again. A cup of "full-fat" coffee a day deals with any likelihood of headache. Acalabrutinib is bloody good stuff!

[Islandjewel23 in reply to SERVrider]

wow, so glad to know you’re so happy with Acalabrutinib! This gives me a lot of hope. Now I just need some patience!

[SERVrider]

I should have said, immediately after going onto acalabrutinib I had a regular diabetes blood test and my GP phoned me because he was concerned about a sudden huge spike in my WBC count. Currently, my WBC count, haemoglobin, neutrophils and platelets levels are all "normal" whereas they had all, except the WBC, been well below the normal range.