Update

Hi Everyone, We have been to see my husband's haematologist today and he is going to be starting Idelalisib/Rituximab next week. Rituximab next Thursday & Friday followed by Idelalisib tablets twice a day, then repeated every fortnight for 4 doses and then monthly for 4 doses. We would welcome any feedback from anyone with experience of this treatment.

Hope you are all keeping well.

Love June.

14 Replies

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  • Hope all goes well for him June. Let us know how it goes. Peggy.

  • Hi June,

    I started the Ritux / Idelisalib combo on Dec 19th 2014 and apart from my usual,slight, reaction to the Ritux everything has gone well. My nodes were quite chunky, with one under my arm being the size of a Bounty bar!! Now disappeared!!

    I was back at the hospital for a check up 2 days ago and everything was as stable as it was 3 months ago. That is a fantastic result for me personally.

    Prior to this treatment and from 2001 I have had around 10 different treatments, including Radiotherapy. Idelisalib has really been a life changer for me and taken me from a very dark period of my life.

    Sorry about the gloom there, the counterpoint to it is that since 2001, I have added 2 Daughters in Law and 4 Grandchildren to my life. And for any football fans Idelisalib allowed me to stand at Stamford Bridge and watch my team win 4-2 in the FA Cup earlier this year. Almost worth any pain for that alone..⚽️😄👍😷💊

  • Thanks for taking the time to reply, we are feeling positive about starting this treatment and hope it works for my husband as he is limited in what he can tolerate because he also has heart failure, so fingers crossed.

    June

  • Good morning,

    My husband started that exact same treatment Jan. 18, 2015. It did wonders, but sadly he has had to stop it just this past month because of colitis. He stopped the Idealisib and did a regement of steroids to stop the diarrhea and they reintroduced the Idealisib on Tuesday and his body totally rejected it with vomiting and the diarrhea to the extreme. He had shown a complete response on his last blood test too. So now we are back to the drawing board with what will happen next. I hope all goes well for your husband.

    Sue

  • Thank you Sue, I'm sorry your husband has had to stop his treatment, I hope he finds something to suit him very soon. We are trying to keep positive and hope this treatment works for him.

    June.

  • Hi June,

    I followed the exact same regimen in Dec 2012 with great results. My blood became nearly normal and all my nodes and spleen shrunk dramatically in the first 2 months. I had a smart phone alarm set for 8:00am and 8:00pm daily to remind me to take my Idelalisib pill. I had loose bowels for the first few weeks but that resolved itself.

    Like many people I had a reaction to Rituxan at the first 2 infusions, so I suggest having a full time observer watching the patient for signs of skin flushing red, hives or itching, since for me it was so subtle, I was unaware of the reaction. My wife summoned the infusion nurse who halted the drug pump for a few minutes then restarted it at a lower dose for 30 minutes. Catching the reaction early can save time and lower the risk.

    I hope your husband gets similar great results.

    Len

  • Thanks Len, We are trying to keep positive for this treatment and will let you know how he gets on with it.

    June

  • hi June my hubby is doing well on these drugs ,bit of shaky start, had lots of lung problems ,take off twice ,but now back taking them and doing very well.Some times you need to just keep trying and get there in the end .I no how you must feel but it gets better lin

  • Hi Nobby00,

    I'm glad your hubby is beginning to settle in with the Idelalisib.

    Would you mind elaborating a little more on the lung issues?

    Jeff

  • my husband was given this treatment but not such a long course as your husband is going to have.

    He was fortunate in only being slightly more tired than he usually was.

    i hope your husband is equally fortunate.

    Wishing you all the best

    manzelka

  • Hi June, I've just noticed that today is the day your husband is starting treatment! So, he's probably having his first Rituximab infusion right now.... And you're probably sitting there watching it... I do hope all is going well.

    Best wishes to you and your husband.

    Paula

  • Hi Paula. Yes he's at the hospital as we speak, I've just called and he is fine. He insisted that I come home, so I've used my time wisely, I've painted the shed and got a casserole in the oven up to now and no doubt I'll find a few more things to do before I go to pick him up. Thanks for remembering. X

  • That's great, June. I'm sure he'd much rather the shed was painted and a casserole cooked, than you sat around at the hospital! :-)

    Paula x

  • Hi, We've been to s ee my husbands haematologist today for a check up following his first week on Idelalisib/Rituximab and he is doing very well, his platelets have risen to 93 and his WBC has dropped to 83, these figures I know are nowhere near what they should be yet, but are going in the right direction. I know it's early days but we are so happy with his progress up to now, he actually mowed the lawn a couple of days ago and was able to climb a flight of stairs today with no problem at all. He is feeling much better in himself, and the difference I can see already is brilliant. I try not to get ahead of myself when I see that others start off well and then the problems start but we'll rejoice for the moment and hope that it lasts.

    June X

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