worrying times

[Laurag78]

Can I ask how long people have lived with CLL for....my mum got diagnosed 8 years ago and the illness only started taking effect 2 years ago but since then it has been one thing after the other and my mum has been so ill..it's the unknown that scares me

[Cllcanada Top Poster CURE Hero]

I'm 18 years post CLL diagnosis, 4 years post Richter's transformation...

Age is a factor, as are comorbities in CLL. Has your mum been treated?

If your mum isn't being seen by a CLL specialist or haematologist it might be an idea to get a second opinion...

~chris

[Justasheet1 in reply to Cllcanada]

Chris,

You're a beast. My hero.

Jeff

[Newdawn Administrator]

Hi Laura, I can tell from your posts recently that you're very concerned about your mum because you've been reaching out and enquiring about various treatments. It must be very worrying for you especially as she's relatively young at 62 and it's so hard to see our loved ones suffer.

How is she doing with the ITP meds, revolade? I see she's just been discharged from hospital and her platelets have risen a bit. Distressingly, you mentioned that she has terrible mouth ulcers which are horrible things to suffer.

You've also mentioned the possibility of ibrutinib so I assume she's had FCR chemo previously? Are her levels ok or were you asking because the doctors have mentioned the need for different options? Sorry to ask all these questions but it helps people to understand and know what to suggest.

It sounds to me like your mum is going through a bad patch at the moment and I know from experience that they seem to come one after another. But please don't think this means a decline because she can climb back up from this with the right treatment and your support. It's just hard at the moment to see her going through all this and knowing what to do to help her. Being there and offering your support is worth its weight in gold to her but it must be taking its toll on you.

There's no certainties in CLL I'm afraid but people can live for decades and we have members on here who have. Some have gone through really bad times but emerged to fight another day!

Stay strong and massive best wishes that your mum feels better soon. I hope she has good medical care that you all feel confident with.

Best wishes,

Newdawn

[Laurag78]

Thank you for you responses.....my mum had her first round of chemo 2 years ago I think the drug was rituximab...she was fine through the treatment but as soon as the chemo was stopped she picked up all sorts of infections.....in and out of hospital....she then was in bed for weeks with muscular pain and she also went deaf.....I think this was due to when her platelets where really low she picked up a cold and was told not to blow her nose as she might bleed so all the congestion in the upper respiratory tract made her hearing go....Eventually things got a bit better and she was told that her platelets would hav to go above 50 for her to have an operation in her ears to drain all the congestion that had accumulated but unfortunately after platelet count being at 97 they dropped the following wk to 3 and my mum has not been able to hav had this done.

As my mum now has a blood disorder due to the CLL she has been put on revolade, it has been two weeks now platelets are at 1 ! I have noticed that all the dots in my mums legs have gone and bruising on her face is fading but she still has bad blood blisters in her mouth which makes me think the revolade not working......My mums doctor is a haematologist and said next step would be to treat the CLL with ibrutinib as if can get this under control then this will also hav an effect on the blood disorder......my mum at the moment is a poor soul, having real bad side effects with the revolade, mostly muscular pain..we are back at doctors tomm to check the blood count and if it has changed any...

[Newdawn Administrator in reply to Laurag78]

I really feel for her Laura and for you too. Please tell her we are all sending massive best wishes her way and hoping that her health improves soon.

Newdawn

[Loves2walk]

Your mom is so lucky to have you, Laura! You must be a great help for her.

My husband was just recently diagnosed with CLL and all this is so new to us still. I can't offer you the advice and information the others on this site can, but I can sent you and your mom my very best wishes.

[MsLockYourPosts Passed Volunteer]

Has your mother had her Ig levels tested (usually IgA, IgG, and Igm)? If so has IVIG treatment been considered if her IgG is low? It appears that revolade is used if someone has failed IVIG treatment, but I don't know your mum's doctor's experience, so I am throwing this out as a question to ask. I know how very hard it is to watch a parent struggling with health issues. I hope the next set of labs show some improvement.

[Hidden]

Hi Laura,

First of all I would like to say that your mother is very lucky to have a caring daughter! I am also blessed with one so I know how much it means...

It is more difficult to comment on her CLL, because we are all different, but please don't despair -- there are many very effective drugs available now that could alleviate your mum's problems and stabilize her CLL. Ibrutinib helped me a great deal after wrestling with my CLL for twenty years, but unfortunately this can also cause bleeding. Hopefully her doctor will find just the right treatment for her.

We all send you both our best wishes!

Sue_w

[SouthFloridaLady]

Laura, sending you and you mother prayers and blessings!