What can I expect this time round.

[saintjohn]

Hi everyone.

Been off line for a while due to various little issues.Knew there was a problem,but this week its hit home big style and now I have a worrying few days ahead.

It started a couple of weeks ago when I had my 3 monthly check up,I had been feeling out of sorts for a couple of weeks and thought it was just another run of the mill virus (seem to get more of those after treatment) My Haematologist said she was concerned because my spleen had gone to 24cms and there were one or two fluctuating results in my bloods,we talked about certain issues I had been experiencing and decide that I would come back and see her in a month to see if it was just a virus thing.I went in for my Ivig last Wednesday but my Heart rate was 27 beats a minute so they couldn't do the infusion but instead admitted me for tests.I've just been sent home but have to go back next week to discuss a 2nd round of treatment,it's only been a couple of years since I finished the last cycle of chemo,really not sure what to expect,minds going ten to the dozen and thinking negative thoughts,trying not to but its difficult

Regards

John

[Jm954 Administrator]

Hi John,

I have no answers for you but wanted to send a few words of support at this time until you get sorted out.

Please let us know how you are.

[Hidden]

What a terrible stage you are at after a troubled first treatment. Monthly visits terrified me.

However, the doctors know more about your bloods now and how you fare in treatment, so hopefully they can get you onto a new non chemo combination.

Don’t give up we CLLers are strong and live for the future.

Best wishes

[Hidden]

Hi John

I’m sorry to hear your going thru a very testing time again.. I can’t do much other than offer my support and best wishes.

I know it might not sound good news after what you’ve already experienced but if you do have to begin therapy again being your second time and with all the new advances there’s every chance now you’ll be given one of the newer softer targeted therapies.

Good luck keep us informed

Stuart

[zaax]

I see your in the UK, therefore according to NICE guidelines it should Ibrutinib (which I am on under FLAIR).

You may wish to read this

healthunlocked.com/cllsuppo...

[terryI_uk]

Sorry you're not doing so well at the moment John, hope your next visit begins to get things back on track, God bless, Terry

[Lily_Pad_Master]

Our minds are targeted by this damn disease. And our hearts. I'm with Devin and Stuart. You probably now qualify for a much "softer" treatment that will give you find results and get you to the next stage where you'll be ready for an even "softer" and better treatment that probably in the early part of some pharma's pipeline. Peace to you, my friend. I suspect you're going to be feeling better soon.

[Mandy56]

Sorry to hear your current situation John. Stay strong. You have a lot of support here and we are all willing you back to health.

[saintjohn]

Thank you all for taking the time to reply,and as always the great advice and support.Had the dreaded phone call this afternoon to attend Hospital this Thursday to have my options explained to me.

Regards to all

John

[noeagaman]

Sorry to hear that you may nead treatment again John. Hopefully you will get a longer remission from this next round of treatment and get back to enjoying life to the fullest. Stay strong! You've got this!

Chris

[Fran57]

Thinking of you John.

We go to see Paul’s consultant this week. I hate the week leading up to the appointment.

Hope all goes well and you come out with a plan for moving forward.

Fran ☺️