Idealisib-serious infections

[eggemma]

Idealisib- serious infections

I am on idealisib for the past 12 months. My WBC is getting better. so far no serious problems  apart from a nasty cough which will not disappear. (3weeks coughing at intgervals). As far as I know Idealisib has been stopped in some countries due to serious illnesses. Some advice from people who are on idealisib.

Massive Thank You.  Emma    

[june65]

Hi Emma. I don't know whether you saw my post yesterday saying that my husband has been on Idelalisib for about 9 months and is doing really well, his bloods are all back in the normal ranges and he doesn't have any side effects. Hope this helps, but it seems you have been on it for longer than him so I would hope that you are feeling better by now(aside from the cough). I also read about serious infections but didn't tell my husband as he would have been scared to try it and to be honest was running out of options  

[eggemma in reply to june65]

Dear June

many thanks for your reply.  This sounds promising. I must admit that I was a bit scared after I read the article about serious infections.

kind regards

Emma 

[Jph02006]

Hi Emma,

I believe that there is a distinction bewteen those using Idelalisib as a frontline treatment and those that have been previously treated. I was on one of the cancelled Gilead trials and had to stop taking Idelalisib after seven months.  I have read some speculation that previously treated folks might have weaker immune responses and therefore somewhat lesser risk of inflammation and infection  

You might also want to discuss with your doctor taking an antibiotic and antiviral. I was on them for the full seven months and had no infection issues. 

John

[eggemma in reply to Jph02006]

Dear John

thank you so much for your reply. It was really very kind of you to write to me. This is greatly appreciated.

I have been on idealisib since end of March 2015. So far I am doing well except my cough. Idealisib is my first treatment (I am 17del) I do not take rituximab. It will take longer for WBC do reach normal range. I am now at  WBC 65. Haemoglobin is now normal (from 98 to 135)

Do you still take idealisib or have you stopped treatment? Some doctors recommend to be on idealisib for the rest of life. I know this is a new drug and not a lot of information available.

many thanks again and kind regards

Emma

[Jph02006 in reply to eggemma]

Hi Emma

I started taking Idelalisib last August (2015) as part of a clinical trial.  It was my first treatment after diagnosis in 2014.  The trial protocol included infusions of Ofatumumab from month 2 through month 8. The trial was closed in March 2016 and I stopped taking Idelalisib cold turkey. 

I am now in a new trial with Ibrutininb and TGR -1202 ( a second generation form of Idelalisib). I relapsed very quickly when I stopped Idelalisib in March. 

Best of luck to you.  I hope it keeps working for you. It is my understanding that you are right--Idelalisib seems to work gradually  

John

[wmay13241]

My wife took Idelalisib/rituximab for 14 months before progression. She had only manageable, minor side effects: cough (probably caused by post nasal drip), low platelets (probably caused by the rituximab), and decreased immunoglobulins. In short, she felt good and did great for 14 months.  

[eggemma in reply to wmay13241]

Thank you so much for replying to me. It is a stressful time and all the help is greatly appreciated.

kind regards Emma 

[MartyR]

Emma,

Of course you must bear in mind that we are all different but if this helps ...

Four months ago I started seeing a Respiratory Consultant with this persistent cough and respiratory problems and after discussion / examination he recommended a “thinning” drug for the phlegm that appears to be in my lungs. ( Carbocisteine 375 mg. 2 x 3 times a day.)

After just two weeks this had eased my cough AND I was bringing up more CLEAR Mucus.

It was explained to me that phlegm in my chest was a breading ground for all the germs and bugs that are naturally occurring in everybody.. and whilst normal people can handle these infections our immune system struggles and needs help like antibiotics and antiviral drugs... just one random throat swab detected that I had developed swine flu and needed several immunisations...!

I have been diagnosed with Bronchiectasis and whilst I have been able to live with it -- it has only been in the last five to six months that this and other infections have come to be more important to resolve than my CLL.

If you read the Bible - we have hope for the future

Revelations 21:4 "And he will wipe out every tear from their eyes, and death will be no more, neither will mourning nor outcry nor pain be anymore. The former things have passed away.”

Marty

[eggemma]

Dear Marty

thank you so much for your reply.  It was so kind of you to write to me.

I am so sorry to hear that you experienced all these problems. I do hope that you will be soon better.

My cough seems to be somewhat better. I did not contact my consultant. I hoped that I can manage without antibiotics. I had no temperature. I was a bit scared when I read the article that Idealisib has been banned in Canada due to fatal infections. I have my full blood count test and appointment with my consultant on 26th May. I hope for good news.

Thank you very much again.

kind regards

Emma

[Justasheet1 in reply to eggemma]

Emma,

I was in a now discontinued clinical trial with idelalisib. 

The protocol for a persistent cough was to have a CT of the chest to rule out pneumonitus. 

Do not wait very long before getting this checked. 

To quote the manufacturer,

"Lung or breathing problems. Your doctor may do tests to check your lungs if you have breathing problems during treatment with ZYDELIG. Tell your doctor right away if you get new or worsening cough, shortness of breath, difficulty breathing, or wheezing."

Jeff