11 months Post SCT

[Billarina]

I’ve been wanting to update my Stem Cell Transplant journey with good news and today I was going to post that, instead I’ve been told that a lot of my lymph nodes are enlarged again. It’s so disappointing to say the least, not what I was expecting as I feel quite well and most of the GVHD issues have subsided. I honestly thought I had a good 5-10 years remission ahead of me at least.

I feel so deflated it’s been 10 years of on and off treatment. So now to find something else and some how gather up the mental energy to go again 🤞

Thank you all for your support to date.

[Jm954 Administrator]

This is devastating news and I’m so sorry that this is happening to you.

I completely understand how you feel - it’s a never ending cycle of exhausting ups and downs and after 10 years you’ve had enough. There’s no option but to keep going but it gets harder and it’s easy to feel very pessimistic. You still have a young family and everything to look forward to and there are other treatments available.

Please let us know how you are and what the plan is. Sending best wishes

Jackie

[Tangolover]

I am so sorry this is happening--hang in there and hopefully things will get better soon!

[Cindi73]

This is not good news. My heart goes out to you. I will keep you in my prayers. God bless.

[whitewsu]

I'm sorry for the disappointing news! I don't know what you are going through, but I do wish for better things for you. Would it be okay if I pray for you?

[Billarina in reply to whitewsu]

I’m not religious but I do appreciate prayers- I just pray to the universe, I looked up at the moon and stars early this morning and just prayed thankfulness for being here as long as I have. 🙏

[whitewsu in reply to Billarina]

Will pray for you, then.

[studebaker]

This is so disappointing situation to be in. My heart goes to you and I pray 🙏🏻 and hope there is treatment for you to give you a chance to heal and get through it all and get back to your best days ahead.

YOU DEFINITELY DESERVE THE BREAK 🤗🙌

Dana

[Dusty54321]

Hi

I’m sorry to hear you’ve had this disappointing set back. I’m fairly new to all this but I think that long as you trust your medical team you have hope that they will find a way to get you back into remission. You have to somehow find the strength to remain positive and work with them towards this goal . It’s a temporary set back and we all look forward to hearing news that you’re on the way up again

[DoNorth]

sorry to hear about your bad news. Did you develop resistance to Loxo and Venetoclax and if not, can they retreat you with another BTK or BCL2 inhibitor? Sounds like your trial was limited duration. I stayed on Ibrutinib for 6 years and Venetoclax for 6 and now I’m on both. Relapsing but it seems to be occurring very slowly since the drugs are still working somewhat. I’m also TP53 mutated

[Billarina in reply to DoNorth]

I became resistant to Loxo but not Venetoclax - yes it was a 2 yr trial) will find out next week what they plan to do/offer me- possibly a clinical trial, they may also look at asking the donor to donate lymphocytes. I’ll be having more biopsy’s in at case to re-assess what’s going on.

[CLLCalifornia-USA]

You’ve come this far, so continue to fight every day. You’re stronger than you think and life is about to get easier. I’ll pray for strength and peace as your journey continues. Please keep us updated on your progress. 🙏Sally

[bayside64]

will pray for you for better days and years

[mdsp7]

Could the GVHD -- and not CLL-- account for the swelling in your lymph nodes? I am sending you love and best wishes that you will yet have those precious years with your family!

[BarneyFife]

Sorry to hear that. New treatments and information on cll all the time. Keep looking forward. Good luck. Positive thoughts and prayers.

[Deilginis]

I empathise with you. The nodes seem to be trickier than the bloods. It’s very wearing, as well as horribly disappointing. Newdawn had a similar experience a couple of years after she had a combo treatment. It happened to her a few months back. But SCT is so much tougher. You’ll accommodate this as you have everything else, but it’ll take a while. 🌷