Recently I'd treatment needed

[Duder]

Hi hubby 49 diagnosed CLL in February been on watch & wait know needs treatment yd last week, quick question he has swollen ankles bottom legs any body else had this also very fatigue due to hemoglobin levels low enemia any ideas to help fatigue

[Cllcanada Top Poster CURE Hero]

Sounds like edema... collection of fluids... I recently spent a few days in hospital with it. He needs to see a doctor and determine the cause.

A CTscan would be a good idea, and a chat with his cardiologist...

Certainly get to his CLL hemetologist in the next couple of weeks, this should not be put off...

Fatigue might be due to many things, like low hemoglobin.

~chris

[Shedman in reply to Cllcanada]

..that serious?

I'm seeing primary care tomorrow about my similar oedema in feet and ankles..

..have been more breathless lately, which could be anaemia or reducing red cell count.

Did not think it so serious.

[Cllcanada Top Poster CURE Hero in reply to Shedman]

It can be serious.. but only your doctor can clarify that. Hopefully its not serious...

~chris

[jbctx in reply to Shedman]

Everything you quote in your post is similar to what I have going on right now.

Can you share the outcome with your doctor?

[Shedman in reply to jbctx]

[this is LONG]

My reply above, to Chris, was ~3 months ago..

..somewhere we (various primary care / consultant doctors and me) dropped a ball..

Start: I failed to note no-infection urine froth (it continued, seemingly after a resolved UTI) was start of worsening nephrotic syndrome.. Kidneys leaking proteins..

- this thickens the blood, giving higher risk of thrombosis

- it also gives rise to edema/oedema of variously lower limbs, but also puffy eyes, abdomen, etc..

- edema can put physical fluid pressure on heart and lungs..

Yes, I started to suffer with raise HR of 96+ and breathlessness.

BUT the words of warning about increased thrombosis risk did not mean so much to me.. How would I know if this occurred?

[this is where the ball was dropped: might have been wise to start blood thinning pre-emptively at that time..]

After referral to renal, and later a kidney biopsy, the nephrotic syndrome was ascribed to CLL complications..

What happened next? Obviously treatment for CLL becomes the priority.. Back to Haematology..

- Not so fast - I mean, things don't or can't always happen instantly, unless there is a clearcut emergency, right?

Primary care sees me with blood pressure of, on one occasion 92/73 (approx.) - I think this was another ball dropped: should have rung alarm bells..

..ditto the extent of breathlessness..

Next appt gets me a referral for chest XRay..

[hard to be patients best advocate if struggling for breath and blood O2 saturation likely suffering..]

Chest X-ray shows fluid efflusion to left lung, 50% .. No emergency triggered.

Renal follow-up 2 days later? Losing my manners at reception - cannot cope with repetitious questions (name/DOB routine..) has nurses come running.. Consultant does rapid diagnostic chest tapping/listening, "I think we'll keep you in.."

A little back and forth: drain lung or test for Pulmonary embolism (which latter requires blood thinning incompatible with large draining puncture needle..) results in blood thinning and CT contrast scan.

Large? Major? Huge? 'Immpressive'?

Finding of bilateral pulmonary embolism..

Consultants surprised: ..that I made it to hospital on my own; that things got this bad without earlier emergency admission; that I'm still alive; that there were all those appointments without spotting this problem..

Me? I know the signs of DVT far better now. Ditto PE.

A few nights in hospital on start of blood thinning Fragmin regime, and my crisis is averted.. HR down to norms; breathing not laboured; blood pressure normal; admiration for UKs underfunded NHS higher than ever, mixed with certainty that there will be feedback at future appointments with the various doctors!

So, I have Fragmin to inject on initial 3 month regime, reducing at month 2; I have corticosteroids for a while, pre-CLL chemo (looks like Bendamustine Rituximab [BR] for me, to go gently on kidneys); diuretics regime - though getting my feet up and eating lower sodium diet are important too - maybe restricted fluid intake, yet keeping hydrated, to reduce edema..

Christmas? Off for meal with friends, hoping for lower end of salt seasoning. My time is sweeter for knowing that likely I cheated death with that pulmonary embolism.. I'll be taking things quite gently for a week or three.. [clot buster drugs have big risks, where these blood thinners allow natural, slow, safer clot clearing over time] ..while the embolism clots clear up..

Then back to consultants.. And, at some point, hoping that CLL treatment gives remission from kidney nephrotic syndrome.. That is not a good additional morbidity, with it's complications including continued thicker blood and higher thrombosis risks..

Biggest lesson: W&W / Watch and Wait / Active Surveillance

IF I had brought my frothy urine *loudly* to the attention of primary care and Haematology consultant, perhaps I would have begun chemo for CLL 8 months ago. The progress of the nephropathy might have been less.. No health crisis might have emerged..

We have to be vigilant and write down signs of health faults... Pursue them if they progress or until we get them identified / resolved / etc. I was busy / muddled / distracted by life..

It is a tough job being one of us. Make notes of dates and symptoms.. Review those symptoms.. Tell your doctors about them.. Remind your doctors of them at every appointment and by email/phone..

Our ability to notice, track and report our unusual symptoms can be critical to our survival amidst our unusual and complicated CLL.

Vigilance - without distress - to all of you in 2019 for best health and quality of life outcomes.

[jbctx in reply to Shedman]

Thanks for the update...................

Off to see my current CLL doc tomorrow, guess i will mention this symptom.

[Shedman in reply to jbctx]

My take away from 2018, is how important it is to keep track of symptoms, and to keep our medical teams updated - to remind them if something persists, and to query if you have doubts..

- do I need to worry about this symptom?

- is there anything that can help manage this symptom?

..and, of course, if the symptoms persist or worsen or you get more symptoms, to tell your team about those too.

If you don't state symptoms, they may well get missed..

I spent 2018 on a slow downward slide with decreasing energy/strength. All a bit vague; except there was intermittent edema/fluid retention and frothy urine even after UTI cleared..

I failed my doctors. My year was a close call, but it could have run differently from start of summer.

[Jm954 Administrator]

Severe anaemia is a well known cause of oedema because of the salt and water retention.both that and the fatigue will probably resolve when the anaemia is corrected but as Cllcanada says he needs to see a Dr.

[JigFettler Volunteer]

Probably orthostatic oedema not dissimilar to what occurs on long flights.

Exacerbated by anaemia, fatigue and immobility. There other possible causes.

Your primary physician should sort out contributory factors and help you resolve this.

Good Luck.

Jig

[thompsonellen]

I know it's counter intuitive, but exercise helps fight fatigue. However, my fatigue was pretty overwhelming when I was close to treatment, but I'm totally fine now post treatment.

[Lily_Pad_Master]

Sorry to hear about your hubby's symptoms. I whole-heartedly agree with everything that's been said here with regard to talking to your doctor. Does he see a CLL specialist? Also, everyone's issues are different. My fatigue was one of two reasons for starting treatment last month. Three months before that, a different doc prescribed Adderall for me to help with fatigue. Of course, I check with my CLL doc. The Adderall has been a godsend. I find, now, after ten days on Acalabrutinib, that I am already reducing my dose because the fatigue seems to be lifting somewhat.

[MsLockYourPosts Passed Volunteer]

Please have your husband see his doctor. Edema can be caused by heart issues, kidney issues, and problems with the veins in the legs, as well as anemia. I'm sure that there may be other causes as well. It's important to have a doctor determine the cause in your husband's case.

[nour80]

How much his hemoglobin levels?