Azacitidine and it’s side effects?

[Hellodolly]

I’ve been unwell myself for a while so sorry I’ve been quiet, but here goes the update for anyone interested and some questions.

Chronic myelomonocytic leukaemia ('CMML') since February 24 persistent low platelets often under 10 for 10 months till December 24 after which they increased and have remained within the normal range.

On Azacitidine since May 2024, some nausea and constipation from pills to counteract it, but this cycle has been very difficult, explosive diarrhoea from day 2. Is this common? Bluntly! He soiled himself and has been using my extra long incontinence towels to prevent further soiling! I buy them from specialist websites in packs of 48 so thankfully I have plenty of supply. But it’s very distressing for him.

My concern is that I’m worried that it’s possible that future cycles will see further bouts of this and that 1. Is this likely? 2. The effect this will have on his health including weight loss and lack of absorption of nutrients? 3. Could it prevent the Azacitidine from working? I can coach him to ask the haematologist these questions but it’s unlikely that he will I’ve explained why in other posts here so I’m not going to repeat that.

[Duncan]

Hello there @Hellodolly, I’m sorry to read about these explosive episodes your other half has been having, if I understand correctly. Sounds horrible for you both.

While I don’t have experience of azacitidine, I do live with a related blood cancer to Chronic myelomonocytic leukaemia ('CMML') and know there’s a really great thread full of people with lived experiences of it. If you’d like to have a read and maybe reach out to others there, here’s a link: Recent diagnosis CMML

May I suggest giving the lovely Blood Cancer UK nurses a call to talk about the medical side of the medicine, we forum members can’t really offer medical advice. Their free number is 0808 2080 888.

Hope that helps a little @Hellodolly, hopefully other forum members can offer some more specific advice.

[DuncanB]

Hi @Hellodolly

Firstly so sorry to read about hubby’s reaction to azacitidine this cycle.

I was on Azacitidine for about 13 months in total.

After started it second time round with Venetoclax I experienced constipation and then the explosion you describe

It did however settle and it was only odd cycle of sickness and getting caught short.

I used incontinence pants which I preferred to pads.

Fingers crossed things settle down and definitely talk to your clinical team.

Hope this helps

[Hellodolly]

This came out of nowhere on day 2 of his 24th cycle of Azacitidine, which haematology are quite happy to continue with as his blood counts are good (apart from B12 vitamin which is another story) The constipation is because of the anti sickness pills although this recent cycle he went completely the other way.

We can only hope that this will be a one off.

[Ceri_BloodCancerUK]

Hi @Hellodolly, I hope you’re feeling a bit better yourself, as it sounds like you’re carrying a lot at the moment. And I hope that your partner is doing okay as well, as no one likes managing bowel problems on top of everything else when dealing with a blood cancer diagnosis.

Thank you again, lovely ‘Duncans’ - @Hellodolly I hope that @DuncanB being able to share his experience of something similar settling down gives you a little comfort, and that you find the great thread that @Duncan shared useful as well.

Your questions about whether this is likely to recur in future cycles, what effect it might have on his nutrition and weight, and whether it could affect how well the azacitidine is working are clinical questions that I’m not able to answer, so I’m going to bring in our Blood Cancer UK nurses here. @BloodCancerUK_Nurses could you please possibly help with this one?

In the meantime, our Treatment for CMML webpage might be worth a read if you haven’t already come across it, as it specifically mentions bowel problems and links through to another page around diet changes that might help.

And to echo @Duncan’s advice, if it would help to talk things through 1:1 our Support Services team is there for you too: 0808 2080 888 or support@bloodcancer.org.uk.

Take care,

Ceri - Blood Cancer UK Support Services

[ChrissyD]

Hi @Hellodolly

I’m so very sorry to hear about what your husband is going through. I’ve just come out of a 9 month period of chronic diarrhoea (due to a bacterial infection I now discover!) and am so sympathetic to the pain and embarrassment he has been experiencing. It’s the worst and very depressing.

It does seem a bit odd that this is a side effect now - after 24 cycles of Azacitidine? So I wonder if your husband could ask for tests from his GP to rule out an actual infection? As the Azacitidine presumably lowers his white cells, he could be more prone to infections from food (presume he is eating a neutropenic diet if his neutrophils are low?) And has he been on any courses of antibiotics recently as they can cause diarrhoea which persists long after the course has finished? These might be questions to ask if your husband is up to it. Maybe write them down?

This must be putting huge pressure on you too as I know you have your own serious health issues.

I hope you can find out what’s causing this.

[DuncanB]

Excellent tips @ChrissyD

As you say food can play its part too.

I was neutropenic for a good period of time and had to be really careful especially in those rare occasions when eating out.

[Emma_BloodCancerUK]

Hello @Hellodolly

Thank you for your post and so sorry to hear that you have been unwell and about your partner’s bowel problems.

We can imagine this has been a difficult time for you both as it sounds like you have a lot going on.

We’re glad others have shared their experience with you and please know that you can call us on 0808 2080 888 if you would like to talk through anything.

If he hasn’t done so already we would strongly advise that your partner speaks with his haematology team/ clinical nurse specialist about this, or if you can speak on his behalf with his consent? It’s important to keep them updated so that they can provide the best support they can.

Both diarrhoea and constipation can be side effects from Azacitidine, you can read more about side effects on Cancer Research’s page - Azacitidine (Vidaza) | Cancer information | Cancer Research UK. Medications can be prescribed by the team to help with this. However, as your partner will be more at risk of infection, it is important to rule out inflammation and infection with diarrhoea. Therefore ideally speaking with the team or GP will be useful as they will likely ask for a sample to rule this out and will be able to prescribe medication to reduce or stop the diarrhoea.

In terms of if this will happen in future, it can be hard to predict, sometimes people will fluctuate with side effects and can depend on their blood counts/ how well they are doing generally/ if they are at higher risk of infection. Whereas other people tend to know how they will do after the first few cycles and will remain with similar side effects, but again, this is not to say that this cannot change throughout the course of their chemotherapy. Sometimes a dose reduction may be required and then this can be changed back if needed to decrease the amount of side effects.

It is important to ensure that your partner is well hydrated as you can lose a lot of water with diarrhoea episodes. Diarrhoea can affect the absorption of nutrients as it means that food is passing through the bowels too quickly and is not given the chance to absorb fully which can then result in weight loss.

As Azacitidine is given by subcutaneous injection, the diarrhoea would not affect the absorption of this as it is not going through the digestive system. However the team may need to re-evaluate his treatment plan e.g. dosing, timing if this persists as they would not want him to be having this side effect each time. As mentioned, it would be a good idea to speak to the team or GP to give a stool sample as it could be that this is due to infection/ inflammation in the gut rather than the chemotherapy alone and so would need to assess this before making treatment decisions.

We hope this is helpful & do keep us updated!

Warm wishes,

Emma (Support Services Nurse)

[DuncanB]

Excellent advice @Emma_BloodCancerUK

[Hellodolly]

Thank you all for your support.

The hospital have ruled out any infection (by way of stool samples) he did have a course of antibiotics for a chest infection well before his chemotherapy without any complications. And after day 4 of chemotherapy all settled down although he did get some constipation for a couple of days. He finished this round 3 days ago.

He’s a very childish eater and only eats what he wants and refuses anything else, I can’t make a 63 year old eat better and my own disability doesn’t help as I can’t prepare and cook the way I used too and his idea of cooking is to open a packet and heat it! This makes us our own worst enemy I know, but I do try to keep things healthier and try to get fruit and vegetables into our meals.

Thank you all again.

[DuncanB]

Glad he finished the current round of chemotherapy @Hellodolly

Food and cooking can be a challenge and don’t be too hard on yourself and your husband.

As long as he’s getting calories in that’s the most important thing and it sounds like you try and get fruit and vegetable into meals.

I know my tastes change with medications.

I find things like soups good. If your husband likes spicy foods that can be a good option.

[ChrissyD]

Hi @Hellodolly

I appreciate that you said the hospital had done faecal tests to look for an infection and they were negative. Because of a ghastly 9 months of chronic and painful diarrhoea following taking amoxicillin for a chest infection, I also had loads of negative tests ruling out E. coli, campylobacter, shigella, parasites, C Difficile, bowel cancer tests, you name it! However, I was given another antibiotic Nitrofurantoin for a UTI over Christmas and within 2 days all my bowel symptoms stopped! Hence my conclusion that it was a bacterial infection.

In trying to make sense of this I discovered that the normal path lab tests only look for commonest and most dangerous types of EColi - not all of them. And they don’t test for a full range of other pathogens such as enterococcus which can often reside harmlessly in the gut -unless it gets out of control. I think being immunocompromised has allowed some of my normal gut bacteria to get out of control -something like Small Intestinal Bowel overgrowth. You’re more likely to get this if you are immunosuppressed which your husband would have been whilst on Azacitidine?

Is he still getting diarrhoea? If he is I think it might be worth getting a referral to a gastroenterologist to ask them to do more detailed tests on the possible causes? As @Emma_BloodCancerUK says, it needs further investigation but a GP does not have access to the more specialist tests that a hospital gastroenterologist has.

[Hellodolly]

Hello all, time for an update.

He’s fine but still having some bowel issues, it’s likely that an increase of his dosage of Metformin is responsible. He was talking two tablets once a day and not splitting them up and only taking one in the morning and one in the evening.

Metformin is notorious for this side effect, I’ve never had explosive diarrhoea with it but I have had loose stools (as do most people with it)

So hopefully we’ve solved the problem.

[ChrissyD]

Hi @Hellodolly

Thank goodness you’ve found the cause and hopefully spreading the Metformin doses out more evenly will help! Supposed to be taken at or near eating too to reduce gastric problems? I’m glad your husband won’t have to go through more investigations! I’ve found it a nightmare trying to get a diagnosis and correct treatment ……and it’s still ongoing!