CLL - possibly needing treatment

Living with and after blood cancer
1

Hi All, any views on the following would be appreciated. I was diagnosed with Chronic lymphocytic leukaemia (CLL) 2018 and been on W&W since.

I saw my Consultant, who I have been seeing privately, on Monday 26th June, who reviewed me, after looking at my Blood counts for May 2023, and which were taken by my GP.

I had been having infections and cold since October 2022. I still have a persistent dry tickly cough which has not abated over ten weeks. I also had my 6th Covid on 25th May with a bad reaction and raised lymph node under the arm I had the jab on. I have also been very fatigued and unable to do my normal exercises.

i had a Chest X Ray and Cat Scan a few weeks ago, the X Rays were clear and the Scan showed lymph node increases indicative of the progression of my Chronic lymphocytic leukaemia (CLL) at my stage.

When he saw me on Monday, he decided to take new bloods, and also checked on my Iron levels which had previously dipped. I have been slightly anemic for some time.

However, when I left him on Monday, the 26th, he said he was happy with me and the Scan results, but still decided to take my Normal Bloods and check on my Iron levels, as the pill he gave for this me was making no difference.

Three days later after telling me he was happy, he called me with the results of the Boods, and explained that my WBC, Haemaglobin, and Platelets were advancing substantially in the wrong direction and that he was referring me back to the NHS Haematologist Team at my local hospital. Of course, I understood, and accepted this at the time.

I was however a little shocked to be told that I now suddenly needed treatment.

He will send the necessary letters, to the necessary people, and thinks that I should be seen in two or three weeks.by the NHS Team, Where a decision, by them, will be made, as to how to proceed.

He also said that the need for treatment was not ā€˜Immediateā€™, and that this was what he called a, ā€˜Slow Burnā€™ change.

During the three years I have veen seen by him, I have always had my Bloods taken at my GPā€™s. The May bloods they took, had a cautionary rider attached which indicated that some of the results might be inaccurate, due to the extension of the 24 hour period from when they were taken.

I mentioned this to my Cosultant but he did not seem too bothered about it. Is it coincidence that the May bloods taken by my GP, and which he was happy with. and the June Bloods taken by the private sector, where he was not.

Sorry if I have not articulated this very well, and it is a little complicated, but I would be interested to know if anyone has had a like, or similar experience, or has any views on the matter.

I am still trying to take all this in, and panicking (Just a little) As I donā€™t know if this is normal, or IF i should I be worried.

Many thanks and all the best to all. Ron

1 Like
2

Hi Ron,
Please do try not to panic and take comfort in your consultants words ā€œnot immediateā€ ā€œslow burnā€ and that he has referred you. Blood tests can go up and down. No doubt your new haematology team will run another set of tests. I hope you do not have long to wait for your appointment.

Helen

1 Like
3

Hi @Vindicatrix it would be easy for me to say ā€˜donā€™t panicā€™ because many of us read a lot into what we hear or donā€™t hear,
from a medical person.
The waiting is horrible, but I certainly do not know if this is normal or not as I have not switched between private and NHS provision.
Please do let us know how you get on and really look after and be kind to yourself infections and colds in my experience can really drag me down and my batteries can be depleted much quicker than I can replenish them.

1 Like
4

Thanks Erica.

Yet again, another heart warming common sense reply from you.

Stay well or wellā€™ish.

Regards Ron

1 Like
5

Hi @Vindicatrix,
Thank you so much for taking time to share this. It is no wonder really that you are feeling somewhat panicked & unsure of many things. I hope you are doing okay today?
After reading through all that has been said about your bloods, it is reassuring to know that the right steps have been taken.

The decision to include your haematology team again is a good one, however I appreciate wonā€™t come without itā€™s anxieties.
They really are best placed to review all your recent results and make decisions around what comes next.

It may be that they review your blood results and nothing changes for now, but this opportunity to be seen again will also mean that you will be reviewed thoroughly & both you and your GP are given reassurance.
The haematology team will also be keen to know how you are feeling and if you are experiencing any new symptoms. Can i ask have you been troubled by new symptoms at all?

I also wanted to add that if you think it might be helpful to talk things through with us, do know that our support line is only ever a phone call away- 0808 2080 888.

Best Wishes, Lauran

1 Like
6

Thanks Lauran I do appreciate your input and support.

I have managed to come to terms with the changes ahead, and agree with you, that, it is probably better that it happens at this time.

You ask about new symptoms, Looking, at my notes, I notice that things seemed to have changed last October, when I had 5 courses of antibiotics withing 6/7 months. Three relating to bad colds with sweats, and 2 relating to Infections from operation wounds.

I also had a bad cold and Viral Infection which has cured, but left me with a continuous dry chesty cough, which I have had for 10 weeks now and cannot shift.

I also had my 5th and 6th Covid Vaccine during this time, and had very bad reactions to them, with large lymph Nodes appearing under the Vaccinated arm, one of which is not quite disappeared yet

In May I saw my Haematologist, he checked my Bloods, and gave me a physical examination. He noted that I was Anemic and put me on Iron Pills.

I saw him again on the 26th of June, and we had a chat, where he seemed to be happy with the May bloods, but decided to take a fresh set of Bloods, and check my iron levels. He told me that my Bloods were on the rise but not to the extent that he would advise treatment.

However, three days later he called me at home and told me that the recent bloods he took were at levels where he thought that treatment might be needed within the next 6 months or so. He also said that the Iron Pill he has prescribed had no effect.

It is worth noting Lauran, that my May Bloods which were taken by my GP, included a cautionary note re the efficacy of some of the results due the bloods being checked over 24 hours after they were taken.

I pointed this out at the time, to my consultant who said this this happens now and again, and he seemed to dismiss it.

I am left wondering if it was a coincidence that the Bloods he took, were the bloods which caused him to refer me for treatment.

I should also say that I have been seeing this Consultant on Private Health Insurance for the last three years or so. He has been seeing me at four monthly intervals, but all the Bloods taken during this time were done at my GPā€™s.

Iā€™m sorry if this post has been somewhat drawn out and complicated Lauran, and I do hope you manage to decipher post.

Thanks again. Ron

2 Likes
7

Hi @Vindicatrix,
I can absolutely decipher your reply. I it can be so difficult to know if your bloods reflect how you have been feeling, particularly if your symptoms are not typical and have been more related to virus like infections.

Itā€™s reassuring to know that your haematologist has considered what might be the next best approach for you should they remain ā€˜un happyā€™ with your bloods.
The decision on if a person should start treatment is very individual and can be a fine balance of weighing up what your bloods are telling them & the physical symptoms you are living with.
That being said, you will always have your space to raise any concerns should they choose to offer you treatment in the near future so please never hold back in raising anything with your consultant.

We know this can lead to lots of uncertainty Ron so always remember where we are if you need to off load or chat things through again.

I hope you have some straight forward answers soon & take care.

Lauran

1 Like
8

Thanks Lauran, your input has been absolutely valuable to me, and as always, presented in a way which is easy for all of us, I think, to understand.

I saw my excellent GP this morning re my persistent deep chest cough, and she has referred me to a 'Respiratory Consultant., after taking 'Sputum Samples,.

I now await the call from my local Haematology Team, which I have been led to believe will be in the next few weeks or so.

I had a long chat with Heidi yesterday, which was also very reassuring and helpful to me.

We discussed Ericaā€™s quest for more Volunteers, and she convinced me that one does not have to be a Chronic lymphocytic leukaemia (CLL) expert, but more of a ā€˜Comforterā€™, and I am certainly able to do that. So, I will be contacting Erica soon.

Thanks again, and KI will keep you updated. Ron

3 Likes
9

So glad to hear that Lauran and Heidi have been helpful. I hope your haematology team get in touch with you soon.
Delighted to hear youā€™re interested in volunteering! If youā€™d like to chat it through more feel free to contact me or @TanyaBloodCancerUK or you can email volunteering@bloodcancer.org.uk for an application form :slight_smile:

1 Like
10

Great news @Vindicatrix that you might like to apply to be a volunteer!!

11

As long as itā€™s simple, and easy to do, I am on board Erica,
No technology involved I hope.

All the best Ron

2 Likes
12

Hi @Vindicatrix, you know me I am certainly not technically minded and I expect any questions you have will be answered on the training!!

13

Hi Erica, after being informed that this involves, Application Forms, Vetting, Training, Zooming etc, I have decided to retract my offer.

Iā€™m afraid Iā€™m still entrenched in the 20th century, and all this bureaucracy puts me off.

However Iā€™m happy just to involve and enjoy myself amongst the lovely people who join this forum.

Thankā€™s for all you kind words and advice over the years, I know itā€™s very much appreciated.

Regards Ron

1 Like
14

Oh, @Vindicatrix I am sorry to hear your decision but understand your reasons.
Involving and enjoying yourself amongst the lovely people who join this forum sounds good to me xx

1 Like
15

Hi @Vindicatrix

I would try not to worry at all until you have some definitive advice from the NHS team. I was diagnosed with Chronic lymphocytic leukaemia (CLL) in 2014 and had many of the things you mentioned over the years (repeated infections, night sweats etc.) and didnā€™t need treatment until last year. However, I had concerning neutrophils etc. for a couple of years before treatment - it was only the growths on my spleen and lymph node enlargements which finally triggered it.
To be quite honest with you, I absolutely hate the treatment (Obi/Venetoclax) and am just about to start cycle 11 - I hope you can avoid it for as long as possible. My life may be being prolonged in terms of longevity, but the quality of life due to the impact of the treatment has deteriorated to the point where I wish Iā€™d never agreed to it. I will certainly refuse any proposed second round of treatment when the time comes and take my chances!
Do let us know how you get on - I hope for your sake that the slightly alarming words come to nothing and you remain on W&W for many years to come!

2 Likes
16

Thanks for that Space Angel and I do so welcome your frankness, I know it is always a sensitive area, when discussing and swapping stories relating to our Chronic lymphocytic leukaemia (CLL).

Some would rather go ā€˜Ostrichā€™, with heads in sands. Some prefer ā€˜Talking Turkeyā€™. (Pardon the pun) and I am one of those.

Itā€™s posts like yours which are so valuable, and which help allow us to make our the very important choices and decisions, regarding the treatments available to us.

Personally I like to gather as much relevant information, as I can absorb, followed by
discussion and debate, and take full responsibility for the outcome.

I do so hope that you can find some solace and quality of life, now that you are embarked on your particular treatment.

I have heard that sometime the pain is worth the good outcomes.

All the very best. Ron

2 Likes
17

hi ron. yeah iā€™ve had similar experience with my chronic leuk although iā€™m behind you time-wise. i read your post and now understand whatā€™s coming next (more informative than nhs experience). iā€™m on wait and watch and bloods are okā€¦but my night sweats (previously episodic) are now daily. last night was a 3am sheet changing event. i think i could cope if it werenā€™t for the sweats which of course remind me every day that iā€™m living with a terminal disease - yay :smiley:
itā€™s interesting that the nhs diagnoses then says nothing about support groups. i have nobody to talk to about this and i donā€™t want to discuss with non-sufferers in case they think youā€™re looking for sympathy or attention.

2 Likes
18

Hi Hackneybloke, you are certainly in the right place, if you are looking for friends to talk to about your Chronic lymphocytic leukaemia (CLL).

I donā€™t know if you are new to the website, the date of your post would indicate that you are. You wil find that there is a massive diversity in background of members of this forum.

There is a great deal of knowledge, as well as empathy, kind advice, and suggestions, from people who know what you are going through.

You mention the word ā€˜Terminalā€™ , which is always a frightening concept to deal with. However, I was told by various Haematologistā€™s, over the years, that I could die of old age before Chronic lymphocytic leukaemia (CLL).

There is also an amazing amount of research and treatment, ever evolving. As a result, I am confident that eventually, it is entirely possible that we will see some future cure on the horizon.

In the meantime, keep fit, eat right, and keep control of your weight, as I have been told that to do so, will result in better outcomes if ever, we need treatment or operations.

I wish you all the very best, and (Keep the bottle half full) :grinning:

1 Like
19

Oh @hackneybloke all I can say is that I agree with everything @Vindicatrix, they have said it so much better than I could.
You are part of our forum family, so you are never alone, and if you would like to speak someone the Blood Cancer UK support line is there for you on 0808 2080 888.
Perhaps it is worth getting your night sweats checked out with your specialist nurse, if you have one, GP or consultant.
Please do let us know how you get on and keep posting.
Look after yourself

1 Like