Chemotherapy

[welshlady52]

Hi guys, not been here for a while. My heamotologist rang this morning saying my red cells are low,and I'm anaemic even though I take an iron tab every day. Been on watch and wait with cll for over 14 years. A few years ago a different heamotologist gave me an iron infusion as he said levels were low and was considering chemo but then they were ok again. I really really am so scared about chemo. Just wanted some opinions thank you

[Vindicatrix]

Hi Welshlady52, I'm sorry to hear about your Anemia, I had a similar thing happen to me recently, I was given an Iron pill to take, which did not help, and I have been told to expect treatment within a year or so.

I was diagnosed 5 years ago, when I was 70years of age, and thought I might have another few years W&W.

You appear to have had quite a long run of W&W and I hope you have any more. I am not an expert on CLL but I am encouraged with the advances of treatment and their success.

Treatment does not frighten me as much as it did, and I hope you will eventually, accept that we live in very hopeful times, in relation to our CLL.

All the very best, and keep the bottle half full. 😀Ron

[welshlady52 in reply to Vindicatrix]

Thank you so so much

[AussieNeil Partner Administrator]

If you need to start treatment (which in your case would be when your haemoglobin trends down below 10), be very grateful for your timing! Only just recently, older chemo treatments were all that was available to treat CLL, but nowadays targeted therapies are used in the UK. They more carefully select for just the CLL and unavoidably maturing B lymphocytes, so treatment is much easier to tolerate.

You might still be able to defer treatment for a while longer, because it's possible that you are having difficulty absorbing iron and or other nutrients that your body needs to make the 200 or so billion new red blood cells you need each day. This might best be checked by your GP with an iron studies fasting blood test.

Please post with any updates; you are following a well trodden path so can expect lots of support. If you get to the point of needing treatment, you'll find lots of shared experiences in this community. Just keep in mind that it's mostly people who are finding some aspect of their treatment difficult who post; there are plenty who see no need to post and say that they are having treatment and doing fine

Neil

[welshlady52 in reply to AussieNeil]

Thank you so much

[GMa27]

I did very well with FCR. 3 rounds & in remission. No side effects. I was 63 at the time, 13q mutated. Depends on ur markers & age as to what treatment is best. I had a port which was so helpful.

Important to get second opinion. Lots of treatments out there to choose from.

[welshlady52 in reply to GMa27]

Thank you

[Gradyboy]

Don't be scared of treatment if it comes to that. You actually may be pleasantly surprised how well you feel if you get treatment. I feel so much better than I use to since being on Venetoclax.

[welshlady52 in reply to Gradyboy]

Thank you so much

[Oleboyredw-uk]

You've posted your question in the right place, much experience here. There are many different variations of CLL, for example I'm 11Q deleted which is more challenging for good results, but not impossible. So, I had FCR in 2012, relapsed and had Ibrutinib and Venetoclax in 2017 and relapsed again and had CAR-T therapy in 2022. Currently feeling great.

Strictly speaking only the FC in that lot are chemos, although for the CAR-T I had a big dose of them(F and C) as prep for the CARs.

As others have said including AussieNeil there may be other things that can be done first.

All the very best, robin

PS:

F Fludarabine. (chemo)

C Cyclophosphamide (chemo)

R Retuximab (monoclonal antibody)

[welshlady52 in reply to Oleboyredw-uk]

Thank you so much

[Artlover1908]

I was afraid too, but I've been on acalabrutinib 7 months now, and it's been painless, I've been very lucky as I've had no side effects. Just take a capsule every 12 hours. It gets routine. My bloods have really improved and I feel so much better. I think the word chemo is always frightening, but modern treatments are so much better. Hope everything goes well for you.

[welshlady52 in reply to Artlover1908]

Thank you so so much for your reply, much appreciated

[very]

My husband,had 6 rounds of FCR, in2016 at the age of 72 and is doing great.Jenny uk

[Kwenda]

Your consultant should, at the very least, discuss options other than chemo.

There are numerous new drugs available that have minimal side effects and which are 100% effective for most people. Mention Acalabrutinib for example which is an agreed UK treatment of just a simple pill to take night and mornings.

If the consultant seems not to agree, ask to be transferred to another consultant which you are entitled to do. Your moniker says " Welsh Lady " and you might consider going to Cardiff where the university has a special CLL research group that is up to date with the latest information and will happily assist.

Dick

[welshlady52 in reply to Kwenda]

Thank you so much. I've never had any support from anyone...just bloods done every few months and a telephone from heamotologist after them. He did mention yesterday that treatments are much better the last year or so and it is tablets

[Vindicatrix in reply to welshlady52]

You are getting lots of good advice, welshlady, which I hope is reassuring regarding any future treatments you may go on.

I would just add, that sometimes we do have to be respectively, politely assertive. You should not be afraid to question the Medics, (Some welcome that, some might not).

As advised before on this forum, it does help to do some well thought out notes before any such conversation. If you are not happy with the response, there is nothing wrong in getting a second opinion.

I wish you all the best. Ron

[welshlady52 in reply to Vindicatrix]

Thank you so so much

[seoul1949]

very sorry, but iron etc. has absolut no effect to increase or stable your Hämoglobin. If too much lymphocytes (white T cells) will be produced within the nine marrow and will not die within few days, your bone marrow will be hampered to produce more erythrocytes { red cells ). Nothing to do with iron pills or the like.

[AussieNeil Partner Administrator in reply to seoul1949]

Iron can help if iron deficiency is somewhat causing the anaemia.

[welshlady52 in reply to AussieNeil]

I'm taking iron tablet 1 every day,always had a history of anaemia even before the CLL

[craterlake in reply to welshlady52]

I was anemic and had my iron checked and it was very low although i was taking an iron supplement and had been for months .. i was also taking a BTK medication for my CLL .. my physician recommended i have an iron infusion .my oncologist said just wait and see if it improves ... i took my physician's advice instead and scheduled an infusion . it helped my iron content some and i felt better after a couple of weeks so i ask for another infusion . this time i was given the largest does permissible .in a week i felt much better .had blood tested a month later and my hemoglobin had gone up a couple of numbers and my iron was just in the normal range ...now i take 1 iron pill a day for average daily required amount according to the info and once a week i take a mega iron pill ... my blood iron content is now in the low normal range .this has taken over 1 1/2 years to stabilize ..and i am still slightly anemic ... i am no longer taking the BTK medication but i am now taking a BCLi medication which has helped me alot .. hope you get the correct help you need and feel better soon , blessings , james

[welshlady52 in reply to craterlake]

Thank you so much James

[welshlady52 in reply to seoul1949]

I had an infusion few years ago and was fine after it,didn't need chemo

[Lenny123]

hope you have access to BTK medications. It may be possible to avoid traditional chemotherapy such as FCR.

[welshlady52 in reply to Lenny123]

What is BTK? He mentioned its tablets now as things have improved with CLL treatments

[Newdawn Administrator in reply to welshlady52]

BTK inhibitors are ibrutinib, acalabrutinib and, most recently, pirtobrutinib. “BTK inhibitors have revolutionized therapy options for patients with B-cell lymphomas,” Wang says. BTK inhibitors work by interfering with the B-cell receptor signaling pathway.

Newdawn

[Skyshark in reply to Newdawn]

Non-covalent reversible BTKi Pirtobrutinib is not approved in Europe for CLL yet. It was approved in US in January 2023. EMC appears to be working on approval for refractory MCL first. It is unlikely to be 1st line, most trials seem to be previously treated patients.

Zanubrutinib is expected to be approved for use in NHS during September. That's another covalent BTKi like Ibrutinib, Acalabrutinib with a slightly different set of side effects.

nice.org.uk/guidance/indeve...

Also in development for 1st line.

nice.org.uk/guidance/indeve...

Pirtobrutinib is on NICE's list as 2nd line therapy.

In progress for relapsed or refractory MCL, initial scope, no expected date yet.

nice.org.uk/guidance/indeve...

Awaiting development for CLL after regular BTKi, basically a placeholder.

nice.org.uk/guidance/awaiti...

[Oleboyredw-uk in reply to welshlady52]

BTK is Bruton's tyrosine kinase. Put simplistically it is made op of proteins involved in signalling internally on cells. BTK inhibitors such as Ibrutinib inhibit the signaling which is a positive in stopping CLL cell production. Note: my description is very simple, possibly too simple, but hopefully gives you an idea. More info (possibly too much more) can be found in places like NHS and Wikipedia.

Best to all, robin

[welshlady52 in reply to Oleboyredw-uk]

Thank you

[veteranoak]

I understand iron is withheld by the body from the circulation as one of the ways it fights infection, so iron tablets per se are not a great idea unless given for specific reasons by a specialist.

AussieNeil and others have covered stages of CLL and anaemia: a key issue to discuss with your haematologist. Other factor are those affecting iron absorption and utilisation. Those who are unfit produce less erythropoietin – the hormone that stimulates the production of RBCs – so yet another example of ‘use it or lose it’. Increasing activity levels will increase RBC production big time, IF there aren’t other factors operating too.

Tea and coffee inhibit iron absorption. I went from normal pink to very pale, breathless, nail changes, some hair loss and difficulty exercising for 6 months during lockdown. I was stuck and lying low abroad (overstay in Europe from the UK while we considered it was too dangerous covid-wise to travel back) and thus reluctant to surface in a doctor’s officer for a blood test. Reading about a role for tea/coffee in inhibiting iron absorption and noting I was drinking lots more than usual while concentrating and working hard on writing up our research, I stopped drinking both altogether for 2 months and went back to pink and able to exercise again. On my return I asked for my Hb to be checked and it was the best ever, though - in some ways fortunately - CLL was discovered.

I now avoid tea & coffee 1 hour before meals and 2 hours after and am fine (I’m on watch & wait.) I expect there’s variation in this effect for different people, as with most things, but it’s worth considering. There are plenty of other reasons too so your haematologist is best placed to investigate those.

[Vindicatrix in reply to veteranoak]

Well said veteranoak (Interesting handle, by the way) you give some good advice, and I was particularly interested in the Coffee/Tea angle.

All the best. Ron

[Nucleusman]

As far as I know chemo has been superseded by Calquence. In any event CLL with anaemia normally treated with Rituximab infusion followed by steroids

[Jimmy_9 in reply to Nucleusman]

I have just started Rituximab infusion due to anemia. It’s a little scary but my bloods went form 61 to 85 after first infusion so hopefully I can get a result

[welshlady52 in reply to Jimmy_9]

Hope you will be ok. Have u had any side effects?

[Jimmy_9 in reply to welshlady52]

Not that I can tell, fatigue is pretty bad but that was already happening. The infusion went fine didn’t feel any different during it

[welshlady52 in reply to Jimmy_9]

Glad to hear that. My heamotologist mentioned tablets now

[Jimmy_9 in reply to welshlady52]

Whatever works I say. Hope the best for you

[welshlady52 in reply to Jimmy_9]

Wishing all the best to you too...thank you

[SERVrider]

Bora da, Everyone is different but...... I started on Acalabrutinib (Calquence) in June 2020, before it was licensed in the UK, so called because it is a Bruton's Tyrosine Kinase inhibitor. Since then my haemoglobin and platelet levels have steadily improved while my WBC count has fallen. The fatigue has gone, the spleen and lymph nodes have shrunk back to normal and I feel fine. All with two capsules a day.

[welshlady52 in reply to SERVrider]

Thank you so much

[Fran57]

Hello 🤗

Hopefully, you will be feeling more reassured after all these responses.

You are bound to be apprehensive, but treatment will probably not be anywhere near as bad as you are imagining.

My husband had FCR treatment in 2015 and, apart from 2 days each month of nausea (which, I will admit, was pretty horrible) he was able to function normally during the 6 months.

He now is taking Venetoclax tablets each day and is doing very well.

I know everyone’s experiences are different, but you’ll probably cope really well.

Try not to worry,

Fran 😉

[welshlady52 in reply to Fran57]

Thank you so so much, glad your husband is doing well x

[Phil4-13]

welshlady52, this was an encouraging thread of information for me. I'm 74, W&W 4 years, 13q14 unmutated. I've started in the last 4 months with repeated shingle episodes(thankfully just 1 each time). So I am on valocyclovir 500mg, one each day. I just this week have a UTI, 2nd time in 4 months. WBC at 111, was at 120 3 months ago. I thought I was in an improvement stage, but now with these immune problems surfacing, obviously not so. I was dreading my next appointment coming up Aug18, but not anymore. I can listen to the doctor's conclusions and suggestions with hope and a relief from fear. My RBC and haemoglobin have taken a slow fall. I'm now feeling the fatigue that many have mentioned. Oh, well, this forum is truly the "best friend" one can have. God bless you all! 🙂Sandra

[welshlady52 in reply to Phil4-13]

Thank you Sandra

[Skyshark]

Welshlady52 you don't have to fear chemo as it's very unlikely you would be getting chemo.

Chemo drugs stop the division of all cells, not just the cancer cells. Cancer cells usually divide quickly but so do skin, gut and hair, all of which are affected resulting in the typical side effects associated with chemo.

There are two types of targetted drugs. One is BTKi, these prevent CLL cells dividing. They are slow acting as CLL cells live a long time but eventually do die without having divided. There are 2 of these drugs in common use in UK at present Ibrutinib ("Ib")/Acalabrutinib ("A"), a third Zanubrutinib will be added soon. The other type of drug is called BCL-2, Venetoclax ("Ven") it attaches to the "power house" mitochondria of a CLL cell isolating it from the cell, so the cell dies. This drug can kill billions of CLL cells very quickly, they just fall apart releasing their components into the blood. Without careful monitoring and additional drugs to assist that can overwhelm the kidneys causing TLS and kidney failure.

Monoclonal Antibodies are designed to target a receptor on a cell. For CLL the target receptor is CD20 found only on lymph B-cells. They attach a marker flag for the destruction of the cell. There are 2 that are commonly used for CLL, Rituximab ("R") and Obinutuzumab ("O"). O is used for first treatment in English/Welsh NHS and R is used for 2nd line. The first IV infusion can destroy half a trillion CLL cells. As they are consumed by Natural Killer cells the risk of TLS is reduced.

Targeted drugs and Monoclonal antibodies have been called "A Game Changer".

Welsh NHS has same drug protocol approvals as English NHS.

Chemo for CLL is FCR, all algorithms that apply to you say "consider FCR if patient IGHV mutated and TP53 wildtype". As it's only effective for an unpredictable half of the <10% that have those markers, it's considered and then promptly discarded. For all intents and purposes for English/Welsh NHS patients chemo is rattling in the bottom of the trash can of history.

All NHS treatments currently used for CLL are modern targeted drugs +/- monoclonal antibodies. These are effective for a wider number of genetic markers. There is a choice between short duration 15x4 weeks combination of 2 drugs VenIb or continuous long term single drug Ib or A, both are tablet only. For some (17p deletion or p53 mutation) a 12x4 week VenO short duration tablet + 9 IV infusions may be offered. I expect the 15x4 week tablet only VenIb therapy to replace this as it doesn't use 9 visits to a "chemo" chair for infusions and doesn't entail the possibility of an infusion reaction. The short duration therapies have an intense 5 week titration phase where the dose of Ven is increased each week, along with frequent blood tests and you have to wait for the results (2hrs+ in outpatients).

[welshlady52 in reply to Skyshark]

I don't understand. These tablets he mentioned are not chemo tablets then?

[Skyshark in reply to welshlady52]

They are not "chemo" tablets. But as they all kill cells they are all cytotoxic, just means kills cells. There will be labels on the package that says "chemotherapy or anti-cancer drug", they are anti-cancer and not chemotherapy .

Chemo acts indiscriminately, every cell in the body can be affected if and when it is dividing. Many chemo drugs were derived from mustard gas, the common ones being cyclophosphamide (the "C" in FCR), chlorambucil and bendamustine (the "B" in BR).

Targeted therapies have a specific action, they only work on the CLL cancer cells by binding to protein only expressed by the CLL.

Monoclonal antibody used for CLL only kill B-lymph cells, which are the type of cell that has the cancer, the middle "L" of CLL. These are mainly used for debulking to quickly remove a large number of lymph cells from the blood so the targeted therapy drugs have fewer targets.

Having been on W&W for so long you may be a bit out of date.

macmillan.org.uk/cancer-inf...

[OSUfan]

Anemia can be also caused by bad kidneys because kidneys generate a hormone that helps enable red blood cell growth in the bone marrow. My oncologist and kidney doctor agree that my low - but acceptable - level of hemoglobin is most likely caused by my stage 3a kidney disease. I am 86 and have been on Calquence for almost two years. My iron level is normal.

[welshlady52 in reply to OSUfan]

I've got problems with kidneys so may be that

[Skyshark in reply to welshlady52]

Kidney function is vital for Venetoclax.

Your doctor is having to make a judgement call between heart condition for BTKi tablets and kidneys for Venetoclax.