Ah I totally hear you about feeling helpless and the uncertainty. It’s so difficult. I wish too that we could make it better and also lessen the worry but somehow we all have to go through it. It really does make a difference knowing we are not alone, but it is still v hard.
it sounds like your mum is doing well how is she feeling? Does she feel unwell or tired?
Dad’s chemo is postponed until Monday now as his infection marker wasn’t quite low enough. It is heading the right way tho. Which is fine, but it is a worry that something will happen before Monday and it won’t start again.
I did call, and ultimately the request for extra help at home would need to come from my parents instead of me and my sister and they don’t want that currently so it’s tricky.
Keeping my fingers crossed that your dad’s chemo will start on Monday and that he stays infection free until then. If he only has the NPM1 mutation then it should respond really well to the chemo.
My mum is tired but getting a little more energy each day. We went to get bloods tested today and her neutrophils and platelets have plummeted but they said that this is what they would expect to happen at this point and they will start to rebuild themselves soon. She has a bone marrow biopsy on Monday to see how it is responding thus far.
Ah, it is so difficult when people don’t want to ask for help. I know it is mostly a matter of pride. Hopefully your Mum might change her mind in the future, caregiving is a tough job.
Hey, sorry for the delay. How did your mum get on when they tested her blood? Did they give her some platelets? Pleased to hear she is getting more energy each day. And I hope the bone marrow biopsy goes ok tomorrow. Will be thinking of you.
Dad has remained ok thankfully, he does have an ulcer but they don’t seem to be too upset about it atm and tomorrow should go ahead. He had blood and platelets Friday and will do again on Tuesday. But his inflammation was before 100 so they said all fine for tomorrow. Fingers crossed!
He has been a bit more mobile etc so it’s been slightly easier re caregiving so that is something.
How are you feeling? How many weeks pregnant are you now? Hope you are feeling ok!
Hope you all have a good week. Will catch up soon xx
Ah that’s amazing! So glad it is still on track for tomorrow and that the hospital actually does it on bank holidays. They can’t do the injections on bank holidays or weekends where we are but they can do the tablets every day. Pretty bizarre!
She didn’t need more blood products in the end. She has to go to hospital to get blood tested three times a week at the moment, on Friday her neutrophils/white blood cell had tanked and platelets v low at 20 (they don’t transfuse unless they are below 10) - the Dr said the drop in blood levels is what they would expect to see at this stage of chemo and they should start to rebuild soon. As her platelets are always low she does get a lot of bruising and petechiae. She is neutropenic so obviously has to be very careful not to catch anything, I think the hardest thing for her is not seeing grandchildren.
I am 25 weeks now, and am really starting to feel pregnant now, I am getting out of breath easily and struggling to keep up with the toddler!
Keeping my fingers crossed that your Dad starts treatment tomorrow. So glad to hear he is a bit more mobile!
Ah yes my dad hasn’t seen my children at all either, it’s hard, but for the best, especially as my youngest was unwell last week.
how did your mums biopsy go? How quickly do the results come? She had one at the beginning didn’t she? Think dad is having one after cycle 2.
the chemo nurses must be so knowledgeable and focused, I don’t think I would be a very good nurse or dr.
dad did manage to start yesterday. 2nd day today. He is already so tired bless him. He had platelets today but his haemoglobin was 90 so he didn’t need blood. He is being tested twice a week atm. Slightly apprehensive but got to take each hour as it comes.
it’s very hot isn’t it! I hope you are managing ok. I remember it being so hot when I had my 2nd in July it was so difficult! I swear it took me a few years to cool down from that pregnancy
I cant remember if I forgot anything as I can’t see the previous chats when I reply, sorry if I have!
Thanks for keeping me updated. So glad he has started treatment, hopefully he should be feeling much better soon. My mum’s bone marrow biopsy is tomorrow, not sure how long results take. She had her bloods tested today and neutrophils are basically 0 and platelets are 17 so hopefully we have reached the lowest point in regards to bloods now and they will start to rebuild soon. She still has 6 days left of Ven for this cycle. I don’t know it is the same for your Dad but my mum has to take antibiotics permanently as a preventative against infections until neutrophils are over 1.
Hopefully you feel a little calmer now treatment has started!
oh that’s interesting and almost reassuring re the antibiotics? My dad had cellulitis in his foot and so is currently on antibiotics but they finish tomorrow and so my sister is going to get someone from heamatology to look at him to see if he needs some more. I’m not really sure what the reasons why they wouldn’t, but it does make sense to be on them as a precaution for this first month or so surely, as an infection could escalate quickly. So we’ll see.
pleased your mums platelets have not gone below 10! That’s good. Yes, hopefully they will start to rebuild. How does that work if the chemo drugs suppress them? Or is it a case of they suppress the cancer and so your body can start to make healthy cells even with the drugs? It’s very clever!
Does she take venetoclax every day of the cycle? Dad is. I can’t believe she is nearing the end of cycle one! Well done to her and you all, it is such a rollercoaster.
I believe she is on a 25 day cycle of Ven at the moment, with 7 days of Aza at the beginning. If the chemo is working and destroying the cancer then bloods should start to go back up once she finishes cycle 1. Then they would start cycle 2 once bloods had recovered. They have explained that if the Ven is working well for patients then they can shorten the cycle, I know some people end up doing 14 days of the Ven tablets. This gives you more time in between cycles to recover and also hopefully means you have some weeks when you are not neutropenic and can have a better quality of life.
How are your dad’s neutrophils? I think they only do the preventative antibiotic if they are under 1. I guess they are monitoring him closely for tumour lysis syndrome at the moment as it is the first cycle? They were very cautious of it when my mum first started cycle 1 but I think it is rare, the team are good at preventing it. Is he doing the first week of the cycle in hospital? Hope the cellulitis clears up soon.
His neutrophils were 3. Something before he started. I am not sure what they are now. Yes they have been monitoring him for tls. We’ve not heard so I assume that is fine. No he has been doing this as an outpatient. He had platelets on Tuesday and a blood test today said his haemoglobin was 7.7 and his platelets 34 so no blood tomorrow. Hope he will get through the weekend ok. Plan is to have blood Monday. Well tested at least anyway.
that makes sense about adjusting the cycle length etc, I guess it changes as it goes along depending on how the cancer responds. It also makes sense about antibiotics if neutrophils are below 1. I do like to know all the details! I do trust them too obviously but I like to know everything, it eases the anxiety somewhat.
3 is normal which is probably why he was able to do it as an outpatient as he is less at risk of infection. My mum’s neutrophils/white blood cell/platelets were low prior to chemo as that is how her Acute myeloid leukaemia ('AML') presented (I know the white blood cell is usually high in most Acute myeloid leukaemia ('AML') cases). I think my mum’s blasts were also high and the higher the blasts the more chance of TLS. She was completely fine though, I read that only 1% of people on this treatment actually get TLS, and it is only an issue in the first round. We will get the results from the bone marrow biopsy tomorrow and then hopefully she can start injections to boost neutrophils. Once bloods have recovered sufficiently she then starts round 2!
She is doing really well at home and you wouldn’t really know she was ill apart from the bruising, she does get fatigue more easily and can’t walk as far but she is trying to do a little walk every day to keep her fitness levels up. I read a study the other day about how well Acute myeloid leukaemia ('AML') with the NMP1 responds to AZA / VEN and I thought of your Dad. I hope he is feeling a bit better emotionally now that he is home.
So we got the first part of the results back which is where they look at the bone marrow sample with a microscope to see how many blasts remain. My mum’s bone marrow had 64% blasts at diagnosis and now has 0.8%. Anything below 5% is classed as remission as that is the amount of blasts that people without Leukemia have in their bone marrow.
They then do further testing at a molecular level to check if there are any miniscule leukemia cells left that they wouldn’t have been able to see with a microscope. If there are no cells left you are classed as MRD - and if there are some left it is called MRD+. If you are MRD- then it helps in achieving a deeper remission, it doesn’t always happen the first cycle though. So we are waiting on those results, but anyway she is classed as being in remission so it is positive that the treatment is working. Just have to wait for the blood counts to go back up now so she can start cycle 2. All very complicated but I thought I would explain it in detail for when you get your Dad’s results back after he does his first bone marrow biopsy. Both of my mum’s bone marrow biopsies have been completely painless by the way. I hope your Dad is still doing well at home!
Oh wow!! That is such great news! Absolutely fascinating too isn’t it. I’m so pleased for your mum and you all, you must be very happy and relieved. Very good to hear the biopsy was painless too, thank you for sharing that all.
how many rounds will she have? Do they stop treatment or just adjust it? When this all started I’m sure the consultant said my dad would be on chemo all the time? But I’m not sure if I misunderstood.
dad has finished his first lot of aza today. And just continuing with Ven for the rest of the 28 day cycle. He then goes straight into cycle 2 which is the same as this one, then has a BM biopsy. We still don’t know what his other mutations are if any.
He’s been doing ok to be honest but he has this ulcer and cellulitis too so that is difficult. He was also taking his ven on an empty stomach and we read it is supposed to be taken with food as it is 3-4 times absorbed more, so that is also a worry. He had blood and platelets today too.
how is your mum feeling now? Is she still quite tired or feeling any better? How long will they wait to start the next cycle have they said how long it might take for her levels to rise? It’s funny how different places do different things.
I think my dad is struggling somewhat but he is made of strong stuff so is enduring it. I hope we can get through these 2 cycles and it works and he can catch a bit of a break and perhaps heal these wounds he has. The consultant did say the first bit and the first two cycles would be the worst.
Thanks so much! From what I can understand if the patient is ineligible for a transplant then Aza / Ven is generally a forever thing (although the length of the Ven part can be adjusted to make cycles shorter). There has been some research recently into the possibility of stopping the treatment if the patient has been in remission and MRD - for at least a year. The results have been quite encouraging and they have found that there isn’t actually any difference in survival between the group that continued taking it and the group that stopped. Aza / Ven is such a new treatment (8 years old) and studies generally take 5 years to be completed so they are still finding out new things all the time.
Unfortunately there really doesn’t seem to be much research into Aza / Ven in regards to favourable risk Acute myeloid leukaemia ('AML') like NPM1 and my Mum’s mutation (CEBPA) which is a rarer one. Most studies are about intermediate/high risk Acute myeloid leukaemia ('AML') as older people who are ineligible for intensive chemotherapy tend to have worst mutations. We have a meeting with the consultant on Tuesday so I am going to try and figure out what the long term plan is.
I didn’t know about the empty stomach thing - I always thought they advised taking it after a meal because it helps prevent nausea. I don’t think we were advised either way! I am sure it will be fine otherwise they would have told you it had to be taken with a meal.
Does your Dad have a central nurse specialist? Every cancer patient usually gets assigned one incase they have any questions in between seeing the consultant. It is perfectly fine for family members to contact them too. Your parents would have been given a card with their phone number and email address on. I got the full genetic profile (with mutations etc) sent to me by emailing them.
She is feeling a bit tired but her red blood count has stayed normal up until last week when it started to get a bit lower so that is probably why she is more fatigued than usual. I am not sure how long it will take bloods to rise - I think is different for each person, her platelets are currently the highest they have been since before she got diagnosed (38 - which is still considered low, but at least they are rising) and neutrophils are rising fairly slowly. They were 0 and now they are 0.25.
Sorry I realise this message is rather long! Hopefully I haven’t missed any of your questions. Let me know how your Dad is doing when he goes in for his next blood test.
Yes it seems that Aza/Ven is the usual route for those with Acute myeloid leukaemia ('AML') and cannot for various reasons have a Transplant. It’s also used as an alternative to more intensive chemotherapy.
I know various people who have been or are on this combination as I was for about 10 months.
I pretty much had low levels of neutrophils up until and for a long period after transplant.
Positive platelets moving in the right direction.
Important to understand what your Mum should and shouldn’t eat if neutropenic.
I know from experience that need to make sure salads and fruit carefully washed and Black Pepper had to be avoided.
Thanks so much Duncan! Ah yes I remember the neutropenic diet from when my husband was going through intensive chemo, however, we haven’t been advised at all about it this time (despite them being treated at the same hospital). My Mum is being careful with food anyway just to be on the safe side. Thanks for your advice, glad to hear neutropenia is just a normal side effect.
Hi, yes he does have a specialist nurse. I should call them to find out his mutations. I don’t think they have a email address. Sorry for the delay, my dad ended up having emergency surgery last night for the wound on his groin. Very stressful. Saw the haematologist yesterday morning and they sent him to a&e. But it’s all been dealt with now and hopefully it will heal well. All chemo stopped for now. I have got him an appointment with the podiatrist at the hospital on Tuesday so that’s good as he still has the cellulitis. It’s an absolute rollercoaster. He is looking so thin and frail. But we just have to keep going I suppose.
I’m pleased your mum is feeling ok and the platelets are in the 30’s! Let me know how you get on on Tuesday
how is she feeling? Does she feel unwell or tired?
