Is it time to start or not

[AnnaK11]

Hello All, my name is Anna and I'm looking for some info and support for my husband Bernard (63) who is about to start his first round. We're very nervous and scared. Most of all not sure as he is still working and feeling well but blood shows otherwise. Doctor is not recommending waiting much longer, so we're not sure what to do.

[Cllcanada Top Poster CURE Hero]

Hi Anna and welcome!

Hard to help because you don't mention which treatments are being considered.

There could be a number of them, depending on your country.

The general guidance is to seek a second opinion with a CLL clinical researcher, prior to treatment... a hemaetologist well versed in CLL.

~chris

[AnnaK11 in reply to Cllcanada]

Thank you Chris. We are in Canada in Toronto and our doc is in the best hospital here "Princess Margaret". Bernard was diagnosed three years ago and as per doc now is a time to start first round and she wants to start with FCR ( Rituximab, Cyclophosphamide, Fludarabine ) to last for six months. He feel OK and with small symptoms he is 95% ok.

[Cllcanada Top Poster CURE Hero in reply to AnnaK11]

I think you might get an arguement on 'best hospital' from Sunnybrook... Odette CC. 😃

Dr Christine Chen and her team at PMH are excellent, you are in good hands...

FCR is pretty standard for fit patients in Ontario... firstline.

~chris

[Jomary8505]

I too had FCR 2 years ago and everything went well for me. I have the SLL presentation so it was in my lymph nodes and never really affected my white blood count. I only started treatment because it eventually affected my platelets and red blood count both of which decreased. Plus extreme fatigue and loss of appetite due to enlarged spleen. My CLL specialist recommended I start treatment because of how I was feeling but also because the treatment itself could impact my already decreasing blood counts. She felt if I waited longer, I would be less tolerant of the treatment. How are your husband's other blood counts? Perhaps that could be impacting their decision for treatment? It's overwhelming when they first tell you to start treatment. I remember my CLL specialist contacted my local physician the day after I saw her and the next thing I knew the cancer center was calling to schedule the FCR treatment to begin NOW! I knew it but was still in shock receiving the call and had a hard time accepting the fact that I was actually going to be going to a cancer center for treatment. It all went well and the nurses were very helpful so if you do need treatment hopefully you will receive the same care I did. I did work thru most of it with an occasional day off and some half days for treatment. Best of luck!

Jomary