Newly diagnosed and trying for acceptance

[Reetywell71]

Hi. Diagnosed about a month ago I was in total shock as I was feeling well. Just had perfect lab work too. First I was told watch and wait. Then after a CT scan which found several internal enlarged lymph nodes and one external I was placed on Brukinsa 240mg. I have been having some side effects such as mouth sores (awful) a few low grade temps, a few night sweats and some mild back aches. Feeling sad and hoping they will subside. Now on day 11. I want to feel good again and get back to life😘

[Tajie]

So sorry! Fortunately for me, there have been no noticeable side effects. Also I never had any enlarged lymph nodes. Hoping for that to continue!

[Phil4-13]

Reetywell71, I'm 75 and in W&W 5 years. I read where some had side effects and dealt with them with over the counter medicines after speaking to their doctor. In some cases the side effects did go away or the treatment dosage taken was lowered, or maybe a switch to a different treatment. Speak to your doctor about this. 😊Sandra

[Reetywell71 in reply to Phil4-13]

Thank you. I have it in the lymph nodes. Some side effects have subsided. I’m wondering if I need a lower dose. Already on a reduction 🤷🏻‍♀️

[SofiaDeo in reply to Reetywell71]

I am told for many people, side effects go away after time. I gave it mmm 8 months before I called a halt on one treatment I had severe skin issues & it took months to find a diet where I wasn't running to the toilet shortly afterwards. The drug worked but I was miserable, so I finally stopped.

Some people have side effects,some don't. No way to know ahead of time. I've had treatments with very few/mild side effects, so not everything made me react like the one. The mouth sores are possibly due to low platelets, do you know your levels? We often see "dips" of other cells early in to treatment, then things normalize. And FYI, on Brukinsa it is common for people's lymphocyte count go up at first, so don't panic if it does. It pushes CLL cells out of lymph nodes/spleen before being killed off, and this is sometimes seen on a blood test.

[Reetywell71 in reply to SofiaDeo]

Thank you for sharing. It’s only day 11 on the drug and I feel like it’s playing war with my body. What did you try after discontinuing?

Reety

[SofiaDeo in reply to Reetywell71]

Remember in the early days of taking a medicine *that's killing off cancer cells*, your body is spending a lot of energy doing so. It's nice we have options where we don't have to be stuck in a hospital bed, resting while an IV medicine works. But it does mean, if your body is saying "rest a bit more" early on, we probably should. Our meds aren't like, say, a high blood pressure one where our system is just getting tweaked a bit. There is an all out war going on early days of any cancer treatment.

You can read my treatments in my profile, many of us have documented them there. Tap the avatar.

[JigFettler Volunteer]

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[Jm954 Administrator]

I'm sorry to hear of your new diagnosis.

Did your doctors say why they have started treatment immediately apart from enlarged nodes?

[Reetywell71 in reply to Jm954]

The one lymph node was 6cm an indication to start treatment. Concerned it could get bigger and press on something vital.

[BigfootT in reply to Reetywell71]

Reetywell71, That likely hits the criteria of "bothersome". My specialist say >10cm or bothersome can start treatment. Do you have any high risk markers that also may have driven the decision for treatment?

Bigfoot

[Jrugg]

Interesting, I wonder why they rushed to put you on the meds, I have been on the wait and watch list for 5 yrs, still no meds 🙏.

My labs are well above normal and have mildly swollen nodes in my neck.

I asked my doctor why we weren’t treating this and his response was the medicine will make me feel worse, as I am a sympathetic.

Curious why your doc felt differently

[Skyshark in reply to Jrugg]

We only see the lymph nodes that are near the surface of the skin. Some enlarged nodes in the chest can affect the blood supply. Others could affect the function various organs.

[Jrugg in reply to Skyshark]

Ahhh good to know , thank you

[cajunjeff]

healthunlocked.com/cllsuppo...

[Reetywell71 in reply to cajunjeff]

A great article for someone who’s been angry and depressed. Gives me hope thank you

[skipro]

Awe I remember those days when I was first diagnosed in 2011.

It has been a roller coaster of emotions and experiences so I do not envy your position.

While at the same time, so many new promising treatments have come and caring for the patient with CLL has become so much better that there is a lot of hope ahead.

Good luck and God bless you,

Skipro

[Reetywell71 in reply to skipro]

Thank you!

[scarletnoir]

It seems you went from diagnosis to treatment very quickly, which isn't all that common - though in my case the gap was only 5 months after a rapid increase in white blood count plus a very high % of cancer cells in the bone marrow. That was in 2011... some hairy times followed - after chemo an infection put me in ICU for 10 days; during and after treatment, a very nasty skin rash (skin never quite as good as before), and a few months after chemo a large skin cancer which needed 3 major ops to fix.

You are also having treatment, and it has an unpleasant side effect. Ask your doctors if it will persist, and if so if there is an alternative treatment. (In my case, the only option was to come off chemo: I told them just carry on - I wasn't going to stop as the blood counts showed it was working against the CLL). So I'd say - stick with it if it is temporay and if it is working.

The great thing (for you) is that there are so many treatments now. If one doesn't work, the doctors have alternatives - which didn't use to be the case. I'm sure the docs think the one you're on is the best for you (and CLL is tricky as it varies a LOT between people), but if it doesn't work out there will be something else they can try.

With any luck at all, you'll get over this in time. Be patient. Ask questions. Don't rush decisions.

The very best of luck to you.

[Reetywell71 in reply to scarletnoir]

The symptoms subsided after a week. Magic mouthwash helped my mouth sores. Feeling pretty normal physically, not there yet mentally but gaining more acceptance. Relying on my faith and family.

[scarletnoir in reply to Reetywell71]

Good news... I felt better physically after (recovering from) chemo treatment than I had for years - the CLL crept up on me and I was permanently fatigued, but put it down to old age. I'm not sure what you mean by 'mentally' - I do think my memory - never good - got even worse after chemo; as for mental health, that took a while - especially after suffering a secondary skin cancer and 3 ops - but eventually I got back to my rather 'glass half full' attitude to life... I hope it works out for you, too.

[Danie50]

hey! This sucks I know ! But you have found support. Ask others who has been on that med and had the same side effects and see what helped them. And continue to communicate your thoughts and feelings!! You got this!🤗🧡🤎

[Reetywell71 in reply to Danie50]

Thank you!

[anongirll1927]

sending love and support your way❤️