Just joined

[Mtk1]

Hi, I am about to start treatment with acalabrutinib for my cll, I was originally told I would be treated with venetoclax and Obinutuzumab but I also receive treatment for my bladder cancer so my consultant said I wouldn’t be able to receive the v+o while also receiving the BCG for bladder cancer. I was just wondering which is best , I understand why my consultant has done this but I’m not sure if stopping bladder cancer treatment and getting v+ o instead would be better for me.

PS does any one else suffer from 2 or more cancers like me ?

[lankisterguy Volunteer]

Hi Mtk1,

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We have seen numerous videos over the last 2 years where different CLL experts explain the choices and thought processes for selecting first treatments for patients. I can dig out some links if you want.

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But my overview would be that most suggest that O+V is "fast and furious" to start ( the initial treatments/weeks are challenging and need close medical professional monitoring / blood tests & many trips to a infusion clinic to deal with sudden variations in blood results) but after 18-24 months of treatment, most patients can stop all treatment for several years.

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Ibrutinib/Imbruvica, Acalabrutinib/Calquence or Zanabrutinib/Brukinsa are "slow & steady" usually much gentler and simpler to start. Require almost no clinic or hospital time, have few sudden events that need urgent medical attention. Normally these need 4-7 years of daily pills to reach MRD-U (Minimal Residual Disease- Undetectable or Unmeasureable) and then pausing treatment can be considered.

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There are many nuances beyond the comments above, and your doctor should be taking the time to explain all of the factors in your specific case, and take your preferences into account.

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Regarding 2nd cancers- we CLL patients get other solid cancers about 2.3x more often than folks with normal immune systems and we get skin cancers at 5-8x more often. The concerns of dual treatments probably come from the debilitating effects of other treatments and their impact on fitness and blood chemistries. But again, you should ask for a thorough explanation from the doctor to understand all his concerns. (I realize that NHS doctors may be under time constraints, but it is your health and life involved, so you may need to be persistent & demanding to get the needed explanations).

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Len

[Mtk1 in reply to lankisterguy]

Thank you.

[cajunjeff]

Hello Mtk1. I think there is considerable debate and difference of opinion among top cll experts which treatment is better to start out with - acalabrutinib or V plus O. Put another way, some doctors might have recommended acalabrutinib anyway. So to me, I think the fact you have another treatment necessary that contraindicates V plus O for you breaks the tie.

Some people prefer V plus O because it offers a better chance at an mrd negative remission while acalabrutinib is taken long term.

Doctors who prefer starting people on acalabrutinib might argue that they have patients on acalabrutinib who do well for years and years, longer than the average remission on V plus O. The end game for us with cll is not how long our remissions last but how long we are progression free and how long we survive.

We do not yet know how durable V plus O remissions will be nor do we know what subtypes of cll do best with V plus O long term.

We do know with ibrutinib (and likely therefore acalabrutinib) that at 8 years out, something 70 % of those who took ibrutinib are still doing well on it.

I personally would not risk pausing a bladder cancer treatment to take V plus O, when its not even clear V plus O is a better option the acalabrutinib.

Of course your best bet is to ask your doctor what he would do if he had two cancers and was faced with the same choice. Good luck.

[Mtk1 in reply to cajunjeff]

Thank you.

[SofiaDeo]

Like lankisterguy and cajunjeff noted, there are a number of CLL treatments and the reasons to choose one over the other vary. There isn't a specific "best" treatment. Considering that bladder cancer is generally not a slow growing, "more benign" one like the CLL, ensuring that that cancer is treated makes the most medical sense. So adjusting the CLL treatment to still allow the bladder cancer treatment is the safest thing to do. You can always look into switching to the v+o after the bladder cancer is dealt with, if the idea of a constant medication like acalabrutinib is not for you.

[Mtk1 in reply to SofiaDeo]

Thank you, I think my consultant knows best and I will be guided by him, just thought I would ask the question.

[Jm954 Administrator]

There's a similar discussion today going on here. No second cancer but the pros and cons of Acalabrutinib versus Ven+Obhealthunlocked.com/cllsuppo...

Jackie

[Mtk1 in reply to Jm954]

Thank you

[Mtk1 in reply to Jm954]

Thanks for the heads up, I have just read other posts, could I ask what is tp53 etc?

[Jm954 Administrator in reply to Mtk1]

The TP53 gene provides instructions for making a protein called tumor protein p53 (or p53). This protein acts as a tumour suppressor, which means that it regulates cell division by keeping cells from growing and dividing (proliferating) too fast or in an uncontrolled way.

You should have two copies and if this is mutated or partially deleted del(17p), it causes loss of one copy of the tumor suppressor TP53, which then cannot fulfilled its important role in DNA repair, cell-cycle arrest, and apoptosis (cell death). The lack of apoptosis causes the cells to live much longer, even if they have DNA mutations which should induce apoptosis.

CLL expressing a mutated TP53 or del 17p generally does not respond well to chemotherapy and a targeted treatment is advised if available

[Mtk1 in reply to Jm954]

Thank you Jackie.

[cajunjeff in reply to Mtk1]

Jackie gave you the correct short version answer. Here is a bit longer explanation of the types of cll we have and why the TP53 gene is so important, to the extent you are interested in knowing more :

healthunlocked.com/cllsuppo...

[Mtk1 in reply to cajunjeff]

Thank you, everyone on here is so helpful wish I had joined earlier.

[Walt424]

I don’t have anything to add about treatment choices except to say I’m on acalabrutinib with good tolerance and apparent control of CLL. However I also had bladder cancer diagnosed about two years after I started treatment for CLL (I got obinituzimab and chlorambicil). Because my bladder cancer was aggressive (micropapillary) I had a radical cystectomy plus chemo. I hope your bladder cancer is a less aggressive sort. Good luck with everything.

[Mtk1 in reply to Walt424]

So sorry to hear of your troubles and I hope you are doing ok now, I have had bladder cancer now for 2 years and have had 6 turb t ops and 2 courses of mytomycin, but cancer returned however I am currently on a course of BCG and so far cancer has not returned. Best of luck in the future and thank you for your message.

[country76]

Yes, I also had thyroid cancer.