need help - Idelalisib

[springie]

hi there,

I'm needing some info and a reality check. I start Idelalisib rituxsan this week. I'm 90% bone marrow infiltrated (a long story) and 11q deleted. I'm scared and resigned, feel foolish and angry - lots of things. Where do I stand at this point? What does it mean to be 100% infiltrated? I'm having weekly blood transfusions, severely anemic, almost no platelets, etc and I'm too tired to find the blood count papers. Strange thing is that once I realized I needed round the clock oxygen, I can cook, small cleaning projects. Today I want to sweep the floor - somewhat, or just a path through the house. How is that possible.

From lala land,

springie

[annmcgowan]

Hi Springie sorry to hear you have been having such a bad time. Hope the treatment helps. I am starting Ibrutinib and Rituximab tomorrow after a long wait so know how it feels as it all draws nearer.. Can’t help on the bone marrow question.

All I can say is I wish you well and keep us informed of how it goes.

Good luck and take care

Ann

[PlanetaryKim]

I don't have idelalisib experience, springie. But I was more infiltrated than you when I started Ibrutinib monotherapy 5 months ago, and am fine today (except for slightly low neutrophils). Like you, I was transfusion dependent and severely anemic. Ibrutinib worked quite swiftly to sort me out. I hope the same for you with Idelalisib & rituxan.

kim

[Jm954 Administrator]

Hi springie,

I'm sorry to hear you feel like this but it's completely normal as so much is out of your control at the moment.

In a previous post you said your were having Ibrutinib, did you have to stop because of side effects or did it not give you a response?

I can identify with you in feeling scared and resigned if this is your third line of treatment but Idela is a very good treatment for many people who have failed Ibrutinib for whatever reason. Please keep an eye on your lung function as pneumonitis can be tricky with idela and you've posted before about a cough.

Don't give up, I'm pretty sure things will get better. In the meantime, sweeping sounds like a good thing to do and you'll feel pleased with the results when you're done.

Let us know how you are.

[Cllcanada Top Poster CURE Hero]

Hi Springie..things will improve!

I was on tbe same Zydelig (idelalisib) and rituxan... for about 14 months and in that time, my counts came into line. Unfortunately I had to go off it, to deal with fungal pneumoniae, not related to CLL, but my old colon cancer nemisis... treatment.

The combination of rituxan and idelalisib works well but slowly compared to chrmoimmunotherapy...., I found a large improvement after my second rituxan round, then things got better everytime.

I hope you are being closely monitored and you take your Bactrim or Septra as directed, as well as acyclovir, to counter shingles and allopurinol for tumour lysis.

You will feel bette soon, might have some diarrhoea, but if get gets much call your doctor...

They don't tell you...but no grapefruit juice or Seville oranges, star friut and pomegranate juices., or St. John's Wort... same as Imbruvica (ibrutinib)

~chris

[springie]

Thanks so much to everyone!! Ifeel so much better having info and consoling!

I', so happy I made that post...

springie

[starsafta]

Hope this poem that I posted a while back helps. You can see it here:

healthunlocked.com/cllsuppo...

[pkpayne]

Best of luck on your journey Springie. I'm on a trial with Ibrutinib/Venetoclax and so far it's helped me. I'm also 11q and unmutated. Please keep us posted on your progress. Stay strong.

Paula

[lankisterguy Volunteer]

Hi springie,

I was on Idelalisib + Rituxan from Dec 2012 to April 2015- about 30 months and it quickly reduced my lymph nodes. But it took about 3 months for my bone marrow to return all my red blood components to normal ranges. I had one short period of low Neutrophils where I needed a Neulasta injection and that quickly took me from 0.6 Abs Neuts to 8.0 Abs Neuts

So hang in there the improvements will come, it just takes a little time to clean out your bone marrow.

Len

[springie in reply to lankisterguy]

Hi Len,

Thanks so much for letting me know about your experience. If my experience is similar to yours, then I don't mind waiting 3 months to get the marrow back on track. It really helps to hear from you and others. My mind was only finding the scary and bad aspects of cll.

springie