Confused

[Vindicatrix]

Hi all, I have two questions for you today. I have been on watch and wait since 2018. Since last October I have had five courses of Anti Biotics, relating to Chest and Viral Infections, and operation wounds. I have also had periodic bad sweats cold and hot, which I am told could be related to Infections.

I might add, that since last October I have felt a difference in how I feel, with Fatigue becoming an issue. I exercise regularly, but am struggling at the moment.

It has been 10 weeks since I developed my last Viral infection and cold, and although the infection has cleared up, I still have a persistent itchy dry cough (No phlegm)

My first question is, are coughs related to our CLL.?.

I saw my Haematologist on Monday,26th June, and he was happy with my Bloods taken by my GP in May, and also the X Ray and CT scan which he had arranged for me in the past few weeks..

He did say that several of the many Lymph Nodes in various parts of my body, were growing, but were normal progression for my CLL at this stage. A few weeks earlier he put me on Iron pills as I have been Anemic for some time, they have made no difference seemingly.

It is worth noting that three years ago I came out of NHS control, and saw my private Haemotologist. He told me then that if and when I ever needed treatment, he would have to refer me back to the NHS, as he is basically a one man team. I thoroughly understood this and was happy about it.

During the three years under his care, I saw him every four months for a Check up, Bloods, and Physical examination.

On Monday the 26th and after a chat on the X Ray and Scan results, he told me that notwithstanding my history, and Scans etc, he was happy with me, and I made my usual four month appointment on leaving.

However, because the Iron pills had no effect, he, for the first time took my Bloods . Three days later he called me to say that my WBC, Haemoglobin, and Platelets, had advanced quite negatively, and that he was referring me back to the NHS Team within a few weeks.

He told me that my problem was not 'Immediate', and that it was what he called a 'Slow Burn' change. It is worth mentioning that on my GP Bloods taken in May, there were cautionary notes relating to the efficacy of some readings, as a result of them being taken over the 24 hour period.

I put this to my 'Consultant' who said that it was not uncommon, and he seemed not too bothered about it.

I have to say I was quite shocked with his new diagnoses and the need for treatment. Is it coincidental that he was happy with my Bloods taken in May, by the GP, but not happy with my Bloods taken in June, by him at a private hospital.

I am still trying to get my head round this, and being a bit of a Panicker, I am Panicking a little.😃

So, my second question is, Should I be worried.

Sorry if this sound a bit of a 'Ramble' I am not know for my Articulation.

I should add, that over the three years I have been seeing this particular Consultant, he has been absolutely first class, has lots of time for his patients, and explain things in layman terms, in a very concise, pleasant, and sometimes humorous way. He is very well thought off in his profession and is a specialist on Blood Cancers, and popular on the 'Lecturing Circuit, I believe.

All the very best, all, Ron

[AussieNeil Administrator]

Hi Ron,

That your haemoglobin didn't respond to the iron tablets is totally understandable given your CLL diagnosis; your ability to produce sufficient red blood cells with an adequate amount of haemoglobin is constrained by your CLL infiltrated bone marrow, not by insufficient raw materials.

The relevant triggers for commencing treatment are haemoglobin trending below 10 and platelets trending below 100 and not showing any sign of slowing their downward path. Without seeing the changes in your haemoglobin and platelet counts and your lymphocyte doubling time, it's difficult to venture any really helpful feedback on what may have been behind the change in your private haematologist's degree of concern.

Neil

[Vindicatrix in reply to AussieNeil]

Thanks Aussie Neil , that was very helpful. I never paid too much attention to the Blood Counts, when my Consultant surprised me with this over the phone.

He is sending a detailed letter, and I will better absorb the result then, I hope.

Thanks again Ron

[Newdawn Administrator]

Hi Ron,

First answer is of course you should not be unduly worried. ‘A slow burn change’ isn’t an immediate problem but from what you say, I’m sensing anaemia and would be interested in your RBC and haemoglobin levels. Sorry if I’ve missed them elsewhere. Unfortunately, throwing in iron tablets at this stage won’t necessary help if your bone marrow is becoming overcrowded and unable to make the necessary cells. This could explain your fatigue and the downturn in your platelets. Only CLL treatment can remedy this.

I’m also surprised that you were given antibiotics for viral infections as they cannot help but perhaps you had associated bacterial infections too.

My experience is that the NHS is sometimes a bit suspicious of the private sector and don’t necessarily rely on the private treatment path that has been followed. I know this from the reaction of my NHS spinal surgeon to the private spinal surgeon I’d seen. NHS quite rightly feel that with their infrastructure that they are the best people to treat cancer in particular. And your private specialist rightly accepts this.

It’s probably time for a more in-depth look at the level of your bone marrow infiltration as indicated by your dropping blood levels. I think you’re sensing a bit of a change in yourself now which may indicate treatment time is nearing. I’m sure you’ll get the best advice on how to proceed but certainly no panic needed. If your haemoglobin has dropped below 10, they’ll want to start treatment sooner rather than later.

Best wishes,

Newdawn

[Vindicatrix in reply to Newdawn]

Thank you so much for the info, Newdawn, I am somewhat reassured.

I am sorry if I gave the impresison that I was given Antibiotics for the Viral Infection, I hadn't and am aware that they do not help, but are, effective for Bacterial Infections, and I had both at one time or other.

My WBC was high 80's, Haemoglobin was 117, and should be 130 or so plus, and my Platelets were 130, and should be 150 Plus, (I think I have got that right.)

Thanks again Newdawn ,it is so helpful to us all to have this font of information available to us, and I for one really do appreciate it.

Regards Ron

[Poodle2]

Hi Ron, can you post your blood test results? It all sounds very normal for CLL that is slowly progressing towards treatment time. I was very similar, reoccurring infections and fatigue are a sign of a CLL progression, sounds like your anaemia is causing a lot of your fatigue. Iron tablets won't help as it's your bone marrow that seems to be affected at this point. I had to start treatment because of my anaemia and other symptoms of CLL progression. I would say don't worry but it is always easier said than done. I started last year in July and I'm feeling much better so hope that gives you some reassurance. Keep us informed 👍🏻 Petra

[Vindicatrix in reply to Poodle2]

I am so pleased I belong to this Website, It would be more difficult to deal with our CLL, without the advice and encouragement handed out over the years. Your Post was very interesting to me, and reassures me a lot.

Thanks again. Ron

[Poodle2 in reply to Vindicatrix]

Yes, this site is a real blessing 🙏🏻🙏🏻🙏🏻it can be very scary to see ourselves getting sicker. The best thing to do is to come here and ask. You can read my previous posts, I tried to keep "a diary of my treatment" but you will also find my other posts about my anaemia and iron infusions and my infections - hopefully it will help you to feel more relaxed about what you are going through. Ask your consultant to refer you to an immunologist. They will do all the necessary checks to see if you need prophylactic antibiotics or IVIG. I'm sure you would benefit from one of those. All the best Ron.

[Vindicatrix in reply to Poodle2]

When my Consultant called me Thursday, I was not really absorbing all of what he said. But I think he did say, that my WBC was in the late 80's, my Platelets 130, with lower limit of 150, I think, and my Haemoglobin was 117 with lower limit of 130.

I may have got them mixed up, but I will know better when I get his letter with the full details.

Your Post was so helpful Poodle2, and has reassured me somewhat.

Thanks again. Ron.

[cajunjeff in reply to Vindicatrix]

Ron, I can give you a lay person, over simplified answer. Cll is a blood cancer. Specifically, it’s a cancer of lymphocytes. Lymphocytes are one type of white blood cell we have. When a lymphocyte is cancerous, that means it is abnormal. As with other cancers, abnormal cells reproduce too rapidly and function abnormally.

Our blood is made up of about half blood cells and the other half plasma. We have white blood cells, red blood cells and platelets. Platelets are the blood cells that help us form clots if we have a cut and are bleeding. Hemoglobin is a protein in red blood cells that carry life giving oxygen to our organs.

A normal range of white blood cells (wbc) would be about 10,000. Of that 10,000, about a third would be lymphocytes. Your wbc is 80,000. Most all of your wbc is composed of cancerous lymphocytes.

As our lymphocytes abnormally and rapidly reproduce, they tend to crowd out other blood cells like red blood cells and platelets. Since cll is a comparatively slow growing cancer, the “slow burn” your doctor described is the process where your lymphocytes grow while your platelets and hemoglobin decrease. If your platelets get below 100 or your hemoglobin drops below 10 (or below 100 the way your labs are reported), that can be a trigger to start treatment.

Cll is an immunosuppressive disease, meaning it degrades our immune system. An important function of lymphocytes is to make antibodies to help us fight diseases. Our lymphocytes are damaged. Your cough may or may not be related to cll. We can be prone to have more colds and infections than others because our immune system is damaged. Since everyone gets colds now and then, it’s hard to say if our colds are cold viruses we got due to a damaged immune system or a cold we might have gotten anyway.

The good news is that cll is very treatable for most people. Our immune systems are complex and not totally reliant on lymphocytes, so many of us do okay with a damaged immune system. Some people have only 50% blood pumping capacity with their heart, but function okay. Some have but one kidney and still live normally.

Our doctors monitor us mainly through our blood lab work. While they might look at many components, the first thing many of us look at is our wbc count, lymphocyte counts, hemoglobin and platelets.

While your wbc, platelets and hemoglobin are all out of as normal range, your numbers are not bad for someone with cll. If and when you need to treat, you will have excellent options.

I’m no expert for sure, but thats my layperson take of things.

[Vindicatrix in reply to cajunjeff]

Advice from a layperson is very often more valuable and understandable, than that from a Professional, Cajunjeff.

Thanks so much for your explanation, even I could understand most of it,, and it did reassure me a lot.

All the best. Ron

[Islandvibes in reply to cajunjeff]

Very nice and concise write up for us newbies

[Pin57 in reply to cajunjeff]

Of all the many people on this forum that provide exceptional replies (and too many fine folks names to rattle off but most here know who you are), yours Jeff are the top of my list.

When I see your name/replies on posts, I immediately stop in my tracks to read em closely.

They are priceless.

Sooo well written for even I to understand better about this quirky cancer we all have.

Your reply Jeff might just be the most concise (understandable), well written reply, about our CLL that I’ve ever read on this forum.

Exceptional. Thanks Jeff for your once again great explanation of what’s going on inside us with CLL!

Danny

[Vindicatrix in reply to Pin57]

Well said Pin57, and right on, Jeff.

[cajunjeff in reply to Pin57]

Kind words Danny, much appreciated.

[MovingForward4423]

It sounds like you are approaching treatment. Although they may be happy you need to emphasise your quality of life. When I was on W&W I lost a lot of weight, I had increasing fatigue and got a couple of chest infections. My consultant then (Prof Peter Hillmen) commenced Ibrutinib. I was on that for 18 months and I’m now in remission and back on W&W. Get a second opinion of emphasise your view of your symptoms.

[Nucleusman]

get back into the NHS. There are expensive drugs out there which, if needed eventually, will cost you a fortune as a private patient

[Cindi73]

Hi Vindicatrix, my bone marrow was packed with cll,not allowing my red blood cells to form my hemoglobin. I've been on ibrutnib since 2018 n doing well. I wish you the best. Cindi

[Vindicatrix in reply to Cindi73]

Thanks, you so much Cindi, I'm getting more reassured, with every lovely response' Regards Rond

[Astro617]

I am also in Watch and Wait. Over the past year I have had more infections than usual. When I saw my oncologist in May she ordered an IgG test. I came back below normal but evidently not low enough to warrant treatment.

"An IgG deficiency is a health problem in which your body doesn't make enough immunoglobulin G (IgG). Normally, IgG is the most abundant antibody in the blood. It helps prevent infections. So, people with IgG deficiency are more likely to get infections."

[AussieNeil Administrator in reply to Astro617]

CLL suppresses plasma cell production of antibodies/immunoglobulins, plus CLL makes it more challenging for us to respond to vaccinations or new infections by making new immunoglobulins so it's common with CLL to see a downward trend in IgA, IgG and IgM, the condition being called hypogammaglobulinemia.

IgG can be infused to boost counts, but because the source IgG is constrained by blood and plasma donations, it's a very expensive product. Countries limit access by requiring both an IgG count falling below a threshold, which varies by country (or even state/insurance company in the USA) along with evidence of recent severe bacterial infections. Infusions can be delivered by IV (IVIG) or subcutaneously (ScIG). Typically the IgG threshold is 400 in the USA (4.0 most elsewhere.)

Neil

[Vindicatrix in reply to AussieNeil]

That's very interesting Neil. what's the UK's position on IgG? How expensive are we talking about and can it be accessed privately? ('I'm guessing it's not an option for most of us.)

Thanks, again for the valuable info which you always impart, I'm sure we all appreciate it immensely.

All the best Ron

[AussieNeil Administrator in reply to Vindicatrix]

The IgG is about as expensive as gold by weight, but I expect free on the NHS. I don't know whether you could access it privately. In Australia, access is managed through a central authority.

Neil

[Vindicatrix in reply to AussieNeil]

Thanks, Aussiie Neil that was helpful, from what I am hearing, generally it looks like, as always ,'(Money)' is the issue, with a bit of Post Code Lottey thrown in, perhaps, and depending what country you live in,

We shall , however, 'Keep on Keeping on'.

Regards Ron

[Vindicatrix in reply to Astro617]

Thanks, Astro617 that was really interesting. I will make sure I ask my new Haemo Team when I am reintroduced.

All the best Ron.

[Newdawn Administrator in reply to Vindicatrix]

Ron, access to IVIG infusions on the NHS is subject to a very strict criteria now due to cost and availability. I was on it for 12 months until Covid struck and they then evaluated my need under the criteria. Your IgG needs to be 4 or under and you need to be subject to severe infections (usually of a respiratory nature) requiring hospitalisation and not eased by prophylactic antibiotics. They don’t offer IVIG based on other depleted immunoglobulin levels (mine are nearly off the scale!).

If the infections continue, I’m sure your new team will assess your need. Not sure about privately but it would have to be a fabulous private insurance that would pay for this because it’s mega expensive every month. It has to be administered in the haematology day unit too unless you do it at home sub cutaneously.

Regards,

Newdawn

[Vindicatrix in reply to Newdawn]

Thanks, Newdawn, that was a good old fashioned down to earth explanation and one which even I could easily understand (I can be a bit slow on the uptake. at times)

As always money seems to be a factor,, and it seems to me that it is also somewhat of a 'post Code Lottery, too, depending on what country you live in.

Due to the present problem engulfing the NHS, I cannot see things changing any time soon in this area, can you.

All the best. Ron

[bayside64]

To answer your question regarding a dry cough, I have a dry cough and have it along with CLL for a few years now. An occasional lozenge helps me. For me, it often occurs at night.

[Vindicatrix in reply to bayside64]

Thanks, Bayside 64, that was helpful, and somewhat reassuring. I may be starting treatment in a few weeks after 5 years of W&W.

If my cough is connected with my CLL, then hopefully they may do something that will help.

I find that Lozenges help a little, but the cough always persists.

Thanks again. Ron