Another CLL ‘wobble’, seems like I’m ‘losing it’ slightly.

[Petroc]

Hi all, and once more I am looking for information from the vast well of expertise which is out there.

Recently I ‘wobbled’ about being in subset 6. The thing that precipitated my regrettable ‘wobble’ and erroneous ‘consultation’ with Dr Google & Dr ChatGPT was the fact that I was reviewing my CLL position after being on W & W for about three years and relatively problem free (apart from infections & bouts of fatigue). This ‘wobble’ was caused by a persistent cough (sometimes productive with green phlegm, sometimes not - sorry for the detail) so I looked int this subset 6 ‘thing’. My mind was, as ever, put at rest by the brilliance of Aussie Neil, et al.

Now to wobble number two. Three / Four weeks later the cough and it’s ocasional contents are still there. The coughing fits, especially in the morning after breakfast have occasionally induced vomiting. Anyway still feeling very groggy all day & sleeping too much, I decided to contact my CLL specialist who wanted a blood analysis. We had an interview (via Zoom as I’m in the Canaries) and he said that the counts have been pretty stable since first diagnosis. The CLL specialist has said in his referring letter that:

”His blood counts show haemoglobin 137 g/L, white cell count 34.39 x 109/L, platelet count is satisfactory overall. The rest of the numbers in terms of liver function test and renal function test are stable.”

He suggested having a CT scan of my sinuses (I’ve always had chronic sinusitis issues) all the way down to the pelvis. This I am having done locally on Monday (in addition to more blood tests. Again my CLL specialist said that he required that:

“It would be useful to do immunoglobulins and functional antibody titres against pneumococcus, haemophilus, influenza”

Sorry for droning on for so long but I want to keep you all up to speed with the whys & wherefores of what’s going on. So, at last, I can now come to the point which has instigated my latest and worst ‘wobble’ to date.

In the last three days a lymph node has appeared just beneath my right collar-bone / clavicle (about 2cm, painless, quite hard). Of course, being the incorrigible idiot that I am I have read from multiple authoritative internet abstracts /sources that swollen lymph nodes in this location quite frequently are indicative of metastases from lung, stomach or neck; - which naturally I have associated with people with CLL having an increased predisposition toward such cancers (due to the CLL / compromised immune system).

Can any of you geniuses out there give me an idea of what the hell is going on? Is it now less CLL and more lung / neck / stomach cancer that should be concerning me?

Sorry for the inordinate length. The length of my submissions tend to correlate with the degree of anxiety! Hence ‘wobble 2 / slightly losing it’

in anticipation thanks to all for any guidance / info you are able to provide.

P.

[Newdawn Administrator]

Hi Petroc,

I hear your panic and would blame that Dr. Google but I think on this occasion you’ve read the other hundred and one innocent reasons for a swollen supraclavicular lymph node and whizzed over them in favour of the most catastrophic! I’ve done it, we’ve all done it and it’s entirely normal. I did it for exactly the same reason, a swollen lymph node on my clavicle that persisted long after all the others had gone following treatment. It was nothing but it occupied my mind like a sinister albatross around my neck and I couldn’t stop prodding it. Like you, I was plagued with respiratory infections and lymph nodes spark up to do their job during this period. In the end they diagnosed my resistant node as a ‘scar’ from all this immune activity. It went away eventually after giving me sleepless nights and a host of scans.

You’re having a CT scan on Monday which hopefully will allay your fears. It does occur to me having read your profile that you’re very infection prone in the W&W period and it’s a very good suggestion to have your immunoglobulin and functional antibody titres looked at. My immunoglobulins were always sub par and I suffered with infections as a result. Same as you, hacking cough etc and eventually hospitalisation for pneumonia. Nothing more sinister going on however except for CLL doing what it does best in chipping away at our immune system.

I know I can’t fully allay your fears because sometimes Dr. Google can open an anxiety box that’s difficult to close. I’ve no idea what ‘subset 6’ is but sounds like something not worth dwelling on. Somethings we simply can’t change so why torture ourselves about ‘what ifs?’

Please let us know how things go. I confess that I can too be guilty of catastrophysing things in my mind at low moments and rely at those times on my very pragmatic, level headed husband. On one occasion he really put my exaggerated fears into perspective by saying,

‘sometimes a dog is just a dog’ 😉

Best wishes,

Newdawn

[Petroc in reply to Newdawn]

Thanks as ever Dawn for talking sense to an idiot!

The infections recently have been unremitting, ear x 3, urine x 2, cold, fever, cough, sneezing, sinus inflammation - lost count.

I think it’s as much psychological exhaustion rather than exhaustion with the CLL infections per se. Each time an infection hit one thinks ‘is this the one that precipitates treatment’; or ‘is this the secondary we are all told about’?

Thankfully for most of the time during my W&W I’ve put things into perspective and realised how lucky I am!

Lucky to have you wonderfully informed, rational geniuses on hand, Lucky I have a supportive partner, lucky I have a CLL specialist I can trust and lucky that I am part of a health system that is for the most part free.

I really should learn to count my blessings.

Once again Dr Google is at the heart of it! It’s during those weak moments of irrational anxiety that one reaches for the search engine and hey presto what seemed a remote possibility - secondary cancer - becomes a certitude. I swear I haven’t been as bad as this before, I must somehow return to a calmer more rational mindset and as I’ve just said to Sophia, part of that is to learn how to count my blessings.

Thanks, so much, for being there once again in my hour of need.

[Mtk1 in reply to Newdawn]

Sometimes a dog is just a dog. 😂🤣

[SofiaDeo]

The first concerning nodes that presented in me were ones in the clavicle. I also had been having a series of tooth infections that summer. A "possibility" is not a "probability" and given you are having sinus/chest problems on top of a known CLL diagnosis, problems related to either of those is more likely than yet another diagnosis.

[Petroc]

Thanks Sophia, I don’t know why, but after 3 years and largely not being too concerned, all of a sudden I’m preoccupied & a tad depressed and very much in glass half empty mode. I know I’m going through my first really rough patch with this, it just feels like a gathering storm, I need to get myself focussed upon folks who are are a lot worse than me and snap out of it. I am truly lucky compared to millions of others. Sorry for being a pain, I hope it’s just a ‘black dog’ phase!

[bennevisplace in reply to Petroc]

Hope so... and right after Black Dog comes Rock and Roll!youtu.be/YoNu4zyT-R8?si=7uQ...(Not working as expected?)

[Vindicatrix in reply to Petroc]

Churchill did, and you probably are, indeed going through your 'Black Dog' phase.

I suspect that most of us on this website have experienced them too, so you are not alone.

You will feel better after the scans, and be better able to cope, with all that's going on., which certainly has been my experience.

Keep the faith. Ron

[Ptown]

Hello Petroc, these past several weeks I had a similar cough with green mucus and a lot of drainage in the back of my throat. My doctor noted that my ears were getting clogged with wax so I bought a wax removal kit and that helped. My doctor also prescribed a ten day prescription for an antibiotic and instructed me to use a Nettie pot, which is a nasal lavage device, twice a day. After each rinse out, I used a strong nasal spray. It worked out really well for me.

I, too, was fretting that my blood numbers were really going up but, as luck would have it, I was scheduled for a visit to my hematologist during this time and she said my blood numbers were stable. This coming April it will be ten years since I was diagnosed.

Hang in there and do let us know how you are doing. Sending support to you! Carolyn

[Milo_ in reply to Ptown]

47yo W&W 3 years dx.. I had a wicked sinus cold, plugged ear and minor cough for about 33-35 days straight. It was awful. I was on a work assignment the whole time and was unable to even get pain meds over the counter due to being in the USA. Came home just in time to head in for my 4 month labs and my WBC was way up but other tests came in normal. I have not heard from my hematologist so, if he's not worried nor am I.

[Petroc]

Thanks so much Carolyn, I’m really not quite sure what has happened to my sense of perspective over the last few weeks. I feel like I’m doing everything for the last time (melodramatic I know). I’m not sure what has triggered this, as for most of the last three years on W&W I’ve never been overly concerned! Sure, it’s always there in the background but it’s something I’ve hitherto always been able to rationalise. Maybe things will improve once this latest round of blood tests and total body CT scan is done (tomorrow). As I’ve said to Dawn I really need to count my blessings for belonging to this very supportive & informed community and living in a country where my treatment is not conditional on how much I have in the bank and also to bear in mind all those millions on this planet who are so much less fortunate than me.

Thank-you so much for your support & kind words.

P.

[Ghounds in reply to Petroc]

I have experienced a similar feeling, I had a horrible sense of needing to do anything that mattered to me before I ran out of time. At 47/8 years of age.... Yes we do need to count our blessings but, you feel what you feel and it needs to be acknowledged.

[Petroc]

Hi Ghounds, the strange thing about my pessimism & hypochondria is it’s relatively sudden onset. For 3 years I’ve managed to have whatI thought was a a reasoned attitude toward W&W & the CLL in general. If there is any cause I speculate that it’s due to the seemingly endless run of infection after infection which in one way or another has been continuing for about four to five months. It’s the endless appointments (I really should be grateful) the repeated courses of antibiotics some of which are effective others which have to be replaced with something more potent. And then there’s this feeling of what it’s all heading toward - more treatments, etc. Possibly it’s the mental exhaustion with contemplating this all the time and feeling so useless around the house (I was very ‘hands-on’, practical, and a jack of all trades)? It depresses me to have to have contractor friends come to undertake tasks which until this recent bout of infections I was more than capable. Of late, I just feel physically tired to even contemplate doing the job myself. Meanwhile my wife is very supportive and gets in with her full time job as well as managing my bouts of self indulgent misery. Maybe forcing myself to be more active irrespective of the exhaustion May do the trick; possibly this semi-permanent feeling of tiredness is an expression of some level of depression which I need to try not to yield to.

Thankyou so much for your kind & supportive comments.

P.

[Ghounds in reply to Petroc]

Feeling unwell and dealing with constant infections and the endless round of appointments is exhausting and depressing. It's also a shock to suddenly be unable to do the physical things we always took for granted. For context I'm alone, no help, trying to manage large gardens, a home, no heating unless I haul solid fuel and I've been extremely physically depleted this year. It's frightening. The coping strategies I used to have all involved being fit as I loved walking, horse care and riding. Now I struggle to totter out with my dog for ten minutes. I hope very much you can start to feel more like yourself soon.

Just a thought...could you ask for your immunoglobulin level to be checked in case your recent history of infection qualifies you for IVIG? Worth a try, they can only say No.

[Petroc in reply to Ghounds]

Hi - have just returned from providing blood and I am sure they haven’t gone into the detail required by the CLL specialist. Now I’m off back there again for the full body CT scan so fingers crossed. My CLL specialist has asked for something re ‘immunoglobin titrates’ and I’m almost certain I’ll have to return to sort that out (it’s the language barrier and my Spanish leaves much to be desired).

Re coping strategies - we have that very much in common. Somehow, every morning at around 07:00 I drag myself out of bed to take my two GSDs for their walk. It’s about an hour there and back and I used to think nothing of it; now I’m having to stop every ten minutes or so because of the fatigue. This is a ‘strategy’ which I will move heaven and earth to adhere to; - as no matter how exhausting I still feel I owe it to the dogs and that at the very least I can still achieve that task albeit with rather more difficulty.

Thanks again for the help - very much appreciated!

Anyway - now off for the scan!🤞🏼

[Ghounds in reply to Petroc]

Hope all went ok for you today Petroc.

[Vindicatrix]

Hi Petroc, I think it would be wise to see your GP or consultant, and get some scans done.

I have had MRI and Cat Scans of my body and neck recently, as well as X Rays, and Ultra Sound scans.

These can give the medics very good information regarding all the symptoms , and worries you have.

They can also reveal some very bad information too, so if you go down this route, I would advise you to be a aware and prepared, for that.

I do hope things work out well for you, all the best Ron.

[Petroc in reply to Vindicatrix]

Hi Ron, yes thanks all went smoothly. Trouble is that observing the staff - the nurses, radiographers, etc, makes one feel increasingly old and decrepit. Their bedside manner was exemplary and it felt as though they were caring for their grandpa!😩

Now it’s a case of ‘Schrödinger’s prognosis’ - I have to wait for a week to find out so I’m trying to divert my attention to anything but speculating on what may or may not be.

[SofiaDeo in reply to Petroc]

FYI I find taking a lightweight cane on dog walks very helpful. You would think the "extra weight" and something to carry would be annoying, but I found I felt more stable, especially during inclement weather on icy or uneven terrain. It also was useful to fend off jumping dogs, I no longer get knocked over. Just be prepared for the weight of a large dog; I push the end of the cane into their chest, sort of pushing off to one side, as they start to leap up on me & it usually knocks them off balance. I have the dogs leashes in the opposite hand, with them pulled tight up to me.

[Vindicatrix in reply to Petroc]

Hi Petroc, I'm glad the Scan part went well, now is the hard bit. 'Waiting for results'.

I can emphasise with you, as I am also waiting for result which may tell me if I have a tumour and if they can do anything to slow it down.

Trying to take one's mind of this kind of thing is difficult, and also for the family too.

I am dealing with it, by exercising, and listening to music. (We all have our ways) and I am sure you will find yours.

All the very best. Ron😀

[Petroc in reply to Vindicatrix]

Cheers Ron - I know exactly how your feeling and my thoughts are with you. We have music in common as a means of switching off (or trying to). With me it’s also taking the dogs out as far as I can manage; they’ve never had it so good! 🤞🏼for us both!

[Vindicatrix]

Amongst a load of other problems I am having at the moment, one was a consistent cough with green and yellow gunge, over a period of months, antibiotic helped somewhat.

However I was referred to a Lung Specialist, who found a little Bronchial indication,. He also told me that if this happened again, over two or three days, to take antibiotics, which he prescribed., as well as having a 'Sputam' test. I have not had to take them yet, but it is comforting to know that they are on hand.

Hope this helps, hang in there. Regards Ron

[malloy7870]

I too have been dealing with "the cough"and first thing in the morning is the worst.I cough so bad I feel like I need to throw up. Also occasionally bring up the greenish phlegm. Noone has answers.

I am awaiting my first appointment for c l l

😬

[Petroc in reply to malloy7870]

Yes, me also. First thing in the morning for about two hours (off and on). They only thing that seems to help is some moderate exercise - just walking my dogs - and using my voice! I know that last one sounds odd but I’m trying to learn Spanish and walk the dogs with an earpiece in so I constantly repeating Spanish phrases. Together, they do seen to loosen things up and make the cough more productive.