Treatment advised (after 21 years w & w) - CLL Support

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Treatment advised (after 21 years w & w)

ornstin profile image

I am 66 year old male Royal Marsden patient UK. Treatment has been advised (which has come as a big shock to me as it has never mentioned before) mostly because I have a really huge spleen. Apparently extending over to the right side of my abdomen and well below my navel on the left side. This was on physical examination. Had CT yesterday and FISH test (and TP 53 Test) on Monday. I know am IVGH mutated. My blood counts aren't that bad-eg HGB 11.5 WBC 102 with doubling time over a year. Have actually asked for a second opinion from UCLH

What is particularly getting me down is that I was diagnosed with type 2 Diabetes 2 years ago. This was quite atypical type 2 (it mimicked type 1) as it was very sudden onset with dramatic symptoms, nor was I overweight. It is controlled now with Metformin. However the bad news is that there are research articles on the internet which suggest that Diabetes dramatically decreases life expectancy if it is a co-morbidity with CLL.

I told hospital (Royal Marsden) I wasn't keen on FCR, so was offered a choice of (1) Obinutuzumab plus Venetoclax or (2) Acalabrutinib. I was also given a leaflet on Rituxan but I am not sure how this would fit in (could it be combined with Venetoclax as a first-line treatment in the UK?)

Have read quite a lot of people's experiences on this forum with regard to the above drugs, and also the stats for them, which are very impressive. The treatment landscape seems to have changed so much for the better over the last 12 months- a huge plus. However, I am very nervous of Obinutuzumab, particularly because of my Diabetes, because it comes with a lot of side effects which can be severe (eg infections, reaction to first infusion) .My first choice at moment would probably be Acalabutinib, as it seems relatively gentle, but still effective, but Venetoclax plus Rituxan would be an attractive option (if it was actually available as a first-line treatment in UK, which I doubt).

The consultant said if "I was his father" he would advise OB. plus Venetoclax. as he was concerned about long-term side effects of Acalabrutinib. I think I am willing to risk these as i don't have heart issues.

As regards the issue of treatment sequencing. As far as I can see the stats. do not really help on this at least as yet. It seems that all treatments given second-line are likely to be less effective than when given first-line.

I was advised that I would initially need in-patient treatment whichever treatment I chose because of concern about Tumour Lysis Syndrome.

Any thoughts on any of the above? Sorry for its length.!

Antony

34 Replies

Wow, 21 years in W&W. Brilliant. I can’t answer your questions, only to say you don’t sound like a coward at all! I think we all found it quite hard to get our head around oncoming treatment. Well done in asking for a second opinion. All the best and take care

Thank you for your very kind reply. Cheered me up a bit! Antony

And don’t forget to come back with any questions/thoughts. The people on this sight are fantastic. We all have different bodies, differing reactions, but we have one goal - mmmmmm I am getting a bit deep in my words, sorry!

Anthony, both Royal Marsden & UCLH are world class so at least you know you couldn’t get better care, whichever options you decide on or get offered.

Best wishes,

Rita

ornstin profile image
ornstin in reply to RitaBa

Many thanks for your reply! Antony

Hi Antony, I have had type 1 diabetes for 42 years and CLL for 10 years, (64 years old, treatment with Rituximab, Ibrutinib 2015-2018 now in remission). I have not seen anything relating to shortened life expectancy, I wonder how up to date the information you read is, Google can be very misleading and filled with out of date information. Hope you find a treatment option that you're happy with. God bless, Terry

Sushibruno profile image
Sushibruno in reply to terryI_uk

🙂👍

Thank you for your informative reply, Terry. Very much appreciated!

Re Diabetes. I am mostly thinking of a a paper (I have only seen an abstract) published in "Blood", December 3 2015 "The Impact of Diabetes on Clinical Outcomes in Chronic Lymphocytic Leukaemia". The Diabetics were almost exclusively Type 2. I suppose there must be doubts now about the applicability of this study given the rapid development in CLL treatments over the last few years.

But on the whole you are absolutely right. Google throws up lots of out of date medical inf0.

Antony

lankisterguy profile image
lankisterguyVolunteer

Hi Antony-

As RitaBa and Walkingtall62 say, you have taken the recommended steps to get the best possible advice from two excellent sources. And now you have the eviable position of choosing between two effective and proven treatment options. The doctors have learned that the best outcomes are obtained when the informed patient chooses the treatment.

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A friend and very knowledgeable patient here in the USA asked me a similar question recently (we both have been treated many times with most of the new targeted drugs). And all I was able to do, was to share my own preferences and contrast the small differences for his consideration

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It sounds like you are leaning towards Acalabrutinib, and since there is some early indication that the BTK inhibitors may improve T-cell function (reduce exhaustion) that might be the better sequence to use it first, and then Venetoclax later.

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I believe that both Obinutuzumab / Gazyva and Rituximab / Riituxan have similar modes of action and similar side effects, with Obin being slightly more effective and having a two day 10% & 90% first infusion to reduce it's reactions to the first infusions. (I have had about 15 infusions of Rituxan and gotten a reaction to the first one of the series every time, but the infusion nurses always handled it with no drama).

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So I suggest you "go with your gut" and when the Acalabrutinib does not give optimum results then Venetoclax can still be a "plan B" for you.

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Len

ornstin profile image
ornstin in reply to lankisterguy

Thank you-that's a mosr helpful reply.

Yes I agree with you. I am in an enviable position in the sense that I have some excellent first line treatment options available now which weren't available here in the UK until recently. Should have said that in my original post! Antony

AussieNeil profile image
AussieNeilAdministrator in reply to ornstin

Hi Antony,

Great to see you are appreciating that you've been given good treatment choices (yes, how things have changed rapidly in this regard in the UK) and you have the support of two well respected hospitals. I agree with Len about obinutuzumab vs rituximab. You can have infusion reactions with both and while obinutuzumab has a reputation in this regard, it's nearly always a once off and is anticipated, so quickly responded to by the nursing staff. I had just the one during my first infusion, but knowing it was possible lessened my concern when it happened.

You have the right genetics to expect a very long remission with a combination treatment and I can attest to how well the obinutuzumab rapidly reduces your CLL tumour burden, so you can get through the venetoclax ramp-up with less concern about developing TLS or neutropenia. (Obinutuzumab is a second generation anti-CD20 monoclonal antibody and more effective than rituximab.)

With COVID-19 likely to be around for some time, I suggest what you need to consider when considering monotherapy with acalabrutinib vs V+O, is the potential of having to live long term with some side effects vs the long term impact of obinutuzumab (or rituximab) of blunting your ability to make antibodies - to any infection or vaccination. Six months after finishing A+V+O treatment, I still don't have any B-cells, but I also don't have any side effects to tolerate :) .

Neil

ornstin profile image
ornstin in reply to AussieNeil

Hi Neil-Thank you for your very helpful post and hope your remission holds. Re your last paragraph. Weighing one set of possible adverse effects of treatment against another set of possible adverse effects is crucial and you have helped clarify my thoughts. I think the Diabetes may well enhance the weight that should be given to the infection element. Would definitely wish to discuss these issues further with the medics. Antony

HiI was diagnosed stage 4 in November 2020 age 56, spleen past my naval and internal lymph nodes as big as cricket balls.. Straight to Obinatuzamab and Ibrutinib. Now 270 days later I am in remission and on daily acalabrutinib. I have type 2 DM undercontrol. I have had no issues and except for a couple of weeks in November , I continued to be a full time dad to my 4 and 2 Yr old. The drugs are great

Thsnk you. That's heartening to read. Hope you keep well for a long time to come. Antony

If you are not on insulin yet your type 2 diabetes is completely controllable by a ketogenic diet. Not even pills would be required if you managed to completely stay away from carbohydrates. Under the supervision of your diabetologist of course. From what I read here the V does not necessarily need to be combined with O. Perhaps your specialist could explain to you whether V only would be an option.

Thanks. Yes I am definitely going to ask the specialist whether it would be an option to take V on its own or with another drug as a first-line treatment (E.G. Venetoclax plus Rituximab). As things stand, I need to keep an open mind re treatments as I don't have to make decision until early September On the Diabetes- I'm afraid Ineed to be more self-disciplined re diet!

Hi Antony,

Wow, 21 years W&W! That is amazing, I can understand how you thought you might get away without treatment! But about the diabetes:

I was diagnosed with type 2 diabetes just before I was due to start FCR treatment. As you are aware T2D increases the risk of infection, so it's not a good combination with CLL. I thought "bugger this", did some research, decided that Dr Jason Fung had some logical ideas involving a low-carb diet, and threw myself into that. The diabetes and its physical symptoms disappeared completely within a few months. That was over 5 years ago, and it hasn't returned because I've maintained the low-carb diet. My HbA1c level is a steady 37-38 mmol/mol, which is normal.

You don't have to be overweight to get T2D (I was 63kg, BMI 20). You can have insulin resistance and be what is called TOFI - thin on the outside, fat on the inside. It's to do with your metabolism rather than your weight, although they do quite often go together.

A low-carb diet doesn't work for everyone, but we have GPs here running low-carb clinics for T2D with great success for most people who make the commitment. I recommend you read either Dr Jason Fung

thefastingmethod.com/catego...

or Dr Andreas Eenfeldt

dietdoctor.com

They both sell programs, but you don't need to buy anything, they both have a huge amount of information and lectures on their website for free.

Getting rid of the diabetes was a huge load off my mind, both from the point of view of infections from CLL, and of course the horrible longer-term effects of the diabetes itself. Make a decision, give it the boot, and you will have a lot less to worry about. It helps if you have moral support - my wife was convinced by the evidence and decided to go low-carb as well, which was great as she is the cook!

Good luck with both your diabetes and CLL treatment. -Jim.

ornstin profile image
ornstin in reply to guzzifan

Thank you Jim. What you say is both very relevant and also truly inspiring to me. I am not overweight either- my BMI is just over 23. Will definitely look into low carb diet. I know someone who got rid of type 2 D mostly by very intensive exercise and I do try to exercise a fair bit. Keep well! Antony

Hi Ornstin, thank you taking the time to explain your case. I think it is way too early to decide which medication to take for CLL. It sounds like there are issues with your spleen, and perhaps you should post more information once you know the results of the CT scan. As you noted, your hematology results are not bad, so I am a little confused why you would start taking drugs designed to destroy mutated WBCs now, when it is not understood what is going on with your spleen. The fact that you started taking Metformin 2 years is part of the puzzle. I think you might want to focus on the enlarged spleen issue and how it may have complicated your health 2 years ago, or did the Metformin induce an enlarged spleen? You really don't know the whole story right now. As for W&W for 21 years, congratulations! This is very unusual. But, I would not be surprised. You knew you had CLL 21 years ago, and your body changes with time. Something happened that changed your condition. Until the doctors can clearly explain how these 3 pieces of the puzzle fit, I would be hesitant to take any medication. Enlarged spleen/increased glucose in blood being treated with Metformin/CLL condition - there are a lot of moving parts here.

Best Wishes, take it day by day and keep an even keel. Avoid getting too up or too down, it is just wasted energy. Stay in touch, take care. Hope this helps.

Thank you for your caring and thoughtful reply. I would love to get answers to all the questions you raise but doubt I will do so in the near future. I have had a enlarging spleen for years and my Beta 2 microglobulin has been getting higher for years so maybe the Cll deterioration wasn't really surprising. My lymphocytes are also rising fairly quickly.The Diabetes was a huge shock as I had never been pre-diabetic, and I felt really ill for several weeks in 2019 before medication brought the blood sugar under control.I am indeed hesitant about starting treatment for the Cll but am very unlikely to hold out against starting treatment if I get unanimous opinions that I need treatment. My own gut feeling just at present, for what it's worth, is not to hit the Cll as hard as I possibly can, but I will get further medical opinions on what treatment would be best given my age and Diabetes. Regards Antony

AussieNeil profile image
AussieNeilAdministrator in reply to ornstin

BaseballGardener and Anthony,

An enlarged spleen is a common occurrence with CLL - so much so that spleen enlargement is used in staging the disease. The spleen is considered as a specialised enlarged lymph node and lymph nodes are where CLL cells accumulate. A sufficiently enlarged spleen is one of the triggers for starting treatment. In the SLL form of CLL/SLL, the CLL cells don't appear in the blood and just accumulate in the nodes and bone marrow. CLL/SLL is the most common adult variant of Non Hodgkin's Lymphoma.

Anthony,

It's interesting that your B2M increased over time. There's a correlation between B2M and time to treatment.

Neil

Thank you sir for keeping us all better informed. You do a great service to this web-page. I have followed your responses, and this discussion provides more information to help Antony.

I entirely agree!

I have been at this game for almost 9 1/2 years and am having it the best I have ever had it right now and I had 6 rounds of Rituxan in late 2020 and have been on Venetoclax for a year. My blood work in general has been pretty bad during this time but since staring Venclexta, I am nearly at a normal CBC, including platelets, which at times have been in the single digits and are now stabilized at around 140k. I never had OB but I had Ofatumumab for 8 months and I have never been more sick. My sojourn with Imbruvica and Acalabrutinib was just that, I came off of Imbruvica due to side effects only to have them magnified with Acalabrutinib which included some serious cardiac issues and secondary cellulitis type infections in my feet and ankles. I can see clearly now that in my tenth year, next year, I might be able to stop all treatments.

ornstin profile image
ornstin in reply to KevinCLLITP

Very glad things are heading in the right direction! Antony

Sounds like a standard approach - I'm in Chichester, into week 3 of treatment and was also offered a choice between Acala or OB + Venetoclax. The preference was clearly OB+Venetoclax as a time limited treatment which should enable remission and a prolonged period of W&W to follow. Sounded good to me so we started with the phase in of OB - I suffered an immediate severe reaction to a small dose and ended up in A&E but the impact on the Lymphocytes was dramatic (reduction). We agreed an alternative plan to start with Venetoclax and ramp up over a 5 week period (no reactions at all so far) then introduce 6 infusions of Rituximab which is less powerful and less likely to cause another reaction (by which time the CLL load will have been significantly reduced). I was in hospital for the first 2 venetoclax tablets to monitor the TLS risk and am taking other drugs to help minimise the risk. I also have a lump/thickened tissue mass near my spine which a biopsy showed to be CLL related only, which is being checked regularly to ensure that it reduces. Only cause for concern so far has been the drop in neutrophils but these have been brought back up with self-administered injections of Filgrastim which have worked very rapidly. Hope this helps.

ornstin profile image
ornstin in reply to Dawson21

Yes your reply most certainly provides food for thought and I am grateful for your input. Would you be able to provide any further details as to the nature of your reaction to the infusion?

I felt some difficulty breathing, my heart rate then dropped to 30-40bpm and my blood pressure to 60/40, so not fun. The crash team were there in minutes and a shot of atrophine (amongst others) and oxygen brought me back to life. I was not concerned at the time as it seemed to be happening to someone else! Everyone in the hospital seemed to know about it, so it's clearly not a common occurrence. I now get special treatment as a result - kid gloves! I must be allergic to it, which was a shame as I got a big reduction in lymphocytes immediately (down from 74 to 20) after just 19mg of the first pre-load (regular doses are 1000mg). Hope this helps in some way.

ornstin profile image
ornstin in reply to Dawson21

Yes thank you-t is helpful. Many thanks for sharing this info.

My B2M when I got to Dana Farber, after two years of treatment elsewhere was 10 and after everything the past 7 years I have been on a glide path down tot he 4 range, but it increased during my hemolytic anemia of 2020 to about 7. We watch it and consider it a primary indicator.

I think you are starting to accept that in your heart, you need to start your therapy. Stay determined, you will defeat this disease; we all support you!

Well, maybe dangerous for me to say too much at this stage, but I think I am now almost convinced of the need for treatment. Treatment seems to me a new phase in my life requiring emotional adjustment. And many thanks to you and everyone else who responded or liked my posts. It meant a lot to me, and provided me with very valuable feedback. And I hope to provide an update in due course. Antony

I started treatment (UK)at the start of July, after 6 months on W&W, after my platelets went to 50, slightly enlarged spleen & WBC of 222. At the same time of diagnosis (it was estimated from previous bloods that I had CLL for about 9 years), type 2 diabetes also showed. I have, through diet and exercise got the diabetes down to low pre diabetes levels. The treatment is O&V, which i chose because of the results shown & the length of treatment. The first Obi was a classic reaction to the drug. My BP dropped from 140 to 55. I noticed I was getting hot & called the nurses, who increased my fluid intake rate & we continued, to be stopped when it happened a second time. I felt "out of it" for a few minutes, but great nursing staff got me around. Back the next day to finish day 1 & day 2 & had absolutely no reaction. Neutros went down to 0.1, back up to normal (4) after steroids & 1 filgrastin. Talking to fellow patients in the unit, this happened to them (3 of them) (the BP drop). No problems at all since (another 3 doses) & have introduced Vento up to 50g (2 sessions), again no side effects. My platelets are now at 135 after 4 weeks, WBC at 3.5 & my very visible lymphs have disappeared. Strangely, I feel wonderful after the second and subsequent Obi. It has said many times before, drink tons to protect against Tumour Lysis. Very happy at the minute on this treatment. Re the diabetes, I was having very dry mouth at night time & drinking at least a pint overnight. This has now stopped with treatment. I don't know whether that is merely a coincidence though.

ornstin profile image
ornstin in reply to Fergusaims

Thank you for replying and it was very good to read your story. Hope things continue to go well for you.

It seems many people such as yourself have very short w and w periods so I have clearly bee NB very fortunate in that particular respect.

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