Overwhelmed

[Irishezs]

I was newly diagnosed in January/17 I am 70 years old and have been very unwell for years..about 10, now I have this diagnosis seeing rheumatologist, she said these awful infections and this fatigue are not related to my cll as I age this is getting worse, spending my days exhausted in bed..can anyone relate to this.??

[Newdawn Administrator]

Welcome Irishezs and I’m sorry to hear you’re feeling so debilitated with fatigue. That level of exhaustion shouldn’t be expected or tolerated regardless of your age (which isn’t very advanced seeing as the median age for getting CLL is 71!).

Do you have other medical conditions that could add to your fatigue Irish? You mention seeing a rheumatologist. Is this because you have a severe form of arthritis? Who do you consult about your CLL and what stage are you?

Others will be along to welcome you and share their experiences. Best wishes,

Newdawn

[Irishezs in reply to Newdawn]

Hi NEWDAWN, I was thought to have cll back in 2005 when my family doc did routine bloods as I was always ill, and it showed up then but it was very early days bad my oncologist questioned the results with having only a few smudge cells and few gamma spikes. I received immunoglobulin infusions for 1yr which seemed to help the infections. But when I moved to the UK in 2008 my rheumatologist refused to give them to me as he said the side effects out weighed the benefits for me. Then told I probably don't have it at all and dismissed me from clinic. Now January 2017 after long bouts with infections and extreme fatigue I've seen another hematoligist only this time I have developed much more severe symptoms..links shortness of breath..sometimes without exertion ..and strong nausea now everyday and sometimes throwing up... weight loss no appetites severe pain in tummy doubled over, and incontinence, drenched at night and uncomfortable awakens me up. My rheumatologist said it not cll...as any one else on the panel had these symptoms I honestly don't know what to do...help.please

[AussieNeil Administrator in reply to Irishezs]

Some of your symptoms could be CLL related (or due to other causes), so that needs investigation by a specialist in CLL. Arrange an appointment with a haematologist. They can order a Flow Cytometry test to rule CLL in or out so you can then more confidently move forward towards treatment that will hopefully improve your quality of life.

Neil

[Farrpottery in reply to Irishezs]

My husband has had night sweats off and on over the last 4 years through 2 rounds of chemotherapy.

After failed FCR, he was changing his T-shirt as many as 9 times a night.

He began Ibrutinib this past September. The extreme fatigue left him. No more night sweats. We knew he was improving within a week. He's still doing well. Hoping you can get relief also.

Blessings to you.

Farrpottery

[Irishezs in reply to Newdawn]

Hi again, sorry I'm not seeing a rheumatologist I'm seeing a haematoligist for CLL stage 0 watch and wait. No I don't have a rheumatological condition, but am being referred to one for investigation as this joint pain just started recently and gradually crept through almost all my joints, but seems to be easing off a bit now. The infections are the worst...I just get one cleared when two or more come hot on the heals and it just goes round in a circle...never ending and its pulling me down in every way. Saw my rheumatologist yesterday, she said the infections are not coming from cll as my bloods are almost normal, so she did a bunch more bloods including test for vasculitis. She said she doesn't think my symptoms are related to my cll.???

[Bubnojay]

Hi and welcome Irishezs

At 70 you should be getting help to live as well as you can, 70 is the new 50 In my book.

Time to get to the bottom of your symptoms, and that means not letting you GP diagnose from your medical records. Please ask for an emergency appointment with the nearest CLL specialist, that is a haematologist not any other Ologist.

Then you will know for sure if you have cll or not, if not then your GP should be carrying out further tests to try to get to the bottom of the symptoms that are not related to your existing medical condition.

Wishing you some clarity moving forward.

Best wishes

Bubnjay1

[Hidden]

First off 70 is NOT old and I think you need simple life style changes , light exercise, increase water intake , eat many small meals and OTC meds for pain relief. Stay away from over eating white starchy foods. Eat colored fruits and see your regular doctor when needed. You will live a very long life, I PROMISE YOU !

[saturdayschild]

Hey Irish~

Yes! Yes! Yes! I definitely relate! First off , know

that I really feel for you and woke up this

morning feeling everything you described!

Before I share please realize that I can only

share my own experience and perceptions

yet I believe the difference between knowledge

and wisdom is experience. I’ve been to

many doctors and I always share with them

that if they really want to know what Cll is

like go on sites like this! Just like before I

became a widow I could read about it, try

to understand through book knowledge,

and even empathize with others experience.

But when it happened to me! OMG!! I wanted

to locate every widow I ever knew and

apologize for not being able to truly understand the depth of the pain I was

experiencing! Like greif, no two cases of Cll

are alike, I’ve read that and been told that

by doctors who I felt “ got it”! In my case,

as you mentioned I had been driving all

over for miles everyday to have my autistic

daughter placed in a program. Then gradually

I began to feel what I can only describe as

UGH!! I could no longer drive as far. I was

constantly in urgent care to the point

where they knew me by name! My ears,

throat ( I thought) and the fatigue!!

One day this very astute doctor working

there went into the back and came backwith a pile of medical records stapled together and

told me he was sending me to a hemotologist.

He was a very very elderly Doctor. Then

he sent my records along to a well known

“ center”. The doctor did me no favors by

saying in front of my son “ I had the good

cancer”. ( No cancer is good cancer and in

my opinion there is no cure, the staging

in the US is deceiving) for instance my

sister looked it up and read stage 0 so she

concluded I didn’t have cancer! The staging

wording is beginning to change here. Yet

It helped my family ( and children) to be

in denial and use words like I was being

negative or looking for attention! It infuriates

me when doctors or people say coyly that

I have nothing to worry about. It feeds

into my self doubt, I begin to feel crazy and

at the same time the symptoms can be

so isolating that my self esteem is at 0.

I had a doctor at one point who I respected

and felt heard and validated by. She moved

far away....

I live in NY and was in Fl to help my mom

through surgery so I went to a Cll doctor

there. Her healing process was SO long

and I ended up in urgent care one day

in Clearwater. The doctor came in with

his hands on his hips and a big smile and

said” okay! Who made you sick? We’re you

at your grand babies birthday party? Then

he kindly sat down and began to explain

to me in a way that really helped me understand. He said I have cancer of the

Immune system. He told me I was a

compromised host. I could be standing in

a room with someone with an infection

and because my WBCs just keep multiplying

crowding out the red( which by the way

brings oxygen to our brain which causes

shortness of breath for me in the shower

etc.) other people might not catch that

persons cold but I have a better chance.

Infections are not good for me. I think

my body is constantly fighting them off

because I always have what feels like

a sore throat but I have swollen nodes in

my neck. I despise when I read about the

symptoms of Cll and it says “ painless nodes”

Mine hurt! Perhaps some people have

“ indolent” disease, but generalizing is not

fair to those of us who have stage 0

with many many symptoms! This doctor

also told me that the WBC count doesn’t

always reflect the true number. They hide

out in different places not only the spleen.

Under my arms I see them on my forearm

and recognize them for what they are because

my sister died recently and was showing

me nodes. It was a different cancer. As many

know I lost my husband to Colon Cancer,

2 young brothers and my younger sister

to cancer right after my diagnosis.

Along the way I have met many doctors in

some of the most revered Cancer Centers

and many experiences weren’t good. I know

I must trust someone yet we all have clay

feet and my husband honestly could be

alive right now had certain doctors done

something differently!!

I decided to try to get back into yoga last

weekend. I felt so happy that I made it

that far to try to feel some control. I too

get cold sweats, hot sweats, nausea,

The first day wasn’t really exercise or

too much stretching. I felt hope for

the first time in a long time! I went again

a few days later. This time to a very

gentle class. After a while I started to get

cold sweats. I tried to do it at my own

pace. stopping, then continuing. I became

so short of breath, my hair began to get

wet from the sweating. I finally had to

go into another room and sit. It took a

while to catch my breath! I was so frustrated

I wanted to cry. Next day I had a sinus infection, I was so exhausted I couldn’t

get out of bed.

Others each had a different theory. Toxins

leaving my body... anxiety attack!!

>EEK< I knew what it was!! I’m not looking

for pity just validation and the right to

be frustrated. And yes~ I wish some people

would lead with their heart and just give

me a hug~ instead of a theory!

Just being there for someone can have

such a healing effect.

Just one more thing~ I spent 200$ to go

to a Cll specialist in the city. Her fellow

came in first... he mentioned all my concerns

without me bringing them up~ I thought

Yes~ finally! Then when the doctor came

in she didn’t draw blood , I think because

she knew I have a lot on my plate she may

have thought discussing the Cll would upset

me? Yet I told her I had earaches and she

asked when was the last time I went to

an ENT? Okay so here’s the thing: in my

educated opinion these annoying things

like ear infections sore neck nodes

annoyingly constant are secondary to

the Cll. Healthy people have no idea how

difficult it is to get from place to place

especially alone! Give me the damn

antibiotic! The worst is when I lye in bed at

night all alone with my feelings, short of

breath... I remember things like when

my husband was young and just didn’t

feel right. He went to one of the best Drs

in town who couldn’t find anything wrong.

My husband said “ Doc, something is wrong!”

So the doctor took an X-ray and he had

double phenomena!

Another thing I hate reading when I look up

Cll , besides the painless nodes. it says

people end up dying of something else!!

Uhh? Yeah~ phenomena!

This is another long text... you guys must

see my name and say, “ Not her again!”

Welcome Irish! Thank you for sharing it

made me feel less alone!🧚‍♂️

[Irishezs]

Thank you for sharing.x