It's Paula's husband here. I'd just like to give you an update on Paula.
- A week ago Idelalisib was withdrawn because of worsening rash.
- 2 days later she was admitted to hospital with fever (presumed to be chest infection)
- Once off Idelalisib, her spleen enlarged very quickly. Had increasing abdominal pain.
- Yesterday haemoglobin dropped and scan revealed internal bleeding
- She had urgent surgery and her ruptured spleen was successfully removed
- Today she's sitting up, talking and taking an interest in things. But she's still dehydrated, on drip, morphine and oxygen. She's got a long way to go yet. Her CLL treatment is still suspended.
She really appreciates all the support and friendship you folk have given her. I'd also like to say how grateful I am to you for being there for her.
Please to think of her ... and of the rest of the family. If you're happy to pray, we'd appreciate that, too.
Do feel free to make a comment on this thread, or send her a personal message. She's got a smart phone in hospital with her, and I'm sure she'll pick stuff up. Just don't expect any response. (So no questions to her please).
Thanks again for all your support
PeterS
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Oh Peter, I'm so shocked to hear this but relieved to hear the emergency surgery has been successful and Paula is now on the mend. I was thinking how strange it was that we hadn't heard from her on the site for a little while and hoped it was because you were busy or enjoying a few days away. It sounds like she's had a dreadful time and a deeply worrying one for you and the family.
I appreciate how serious a ruptured spleen is and am sending huge best wishes and love to Paula and to you and the family. It must be worrying that they've had to suspend the treatment but at the moment the priority must be getting her safe and well again.
Sending hugs and best wishes if you're reading this Paula. It will give us all quite a shock! Get yourself well again because we need you on here and I personally value your friendship and support.
Hi Paula. I'ma newbe to the site but you have already helped me loads with your calm and considered advice. I'm so sorry that you are going through it at the moment and send my best wishes for a speedy recovery…. Jennie x
I'm so very sorry to hear that Paula has had such severe complications while on Idelalisib treatment and that this is now suspended. It is a very salutory story and I hope that with careful treatment she will recover quickly.
Thank you for updating us. Paula is greatly loved on this forum, and elsewhere I am sure, and we send our very best wishes to you all as a family.
We really have appreciated all the love and support that you Paula, have lavished on us. Wow! You poor thing . I do so hope that you start to feel better soon.
So sorry to hear you are ill in hospital Paula, sending my best wishes to you and your family and hope you will be well and back home with them very soon.
Thanks for letting us know Paula's situation Peter. Paula is a very well respected and hugely appreciated member of our community - evidenced by 20 replies just 5 hours after you posted this concerning news. I expect many more members will join in with well wishes for Paula when the daily notification goes out!
Paula, I know you'll have been reluctant to post about your recent health challenges on the Idelalisib trial, but we do care for you and wish you a speedy recovery. You've done so much for other members over the years - providing so many of us with much needed support when we've had our own mostly much smaller challenges in our life with CLL. Know that our thoughts and prayers are with you and your family now.
So sorry to hear you have been through such a terrible ordeal. Happy to hear prompt treatment was received and things are starting to look up. Sending prayers and good wishes to all of you.
Thank you for the update,Please pass on my regards to Paula,we will miss her much valued input to our cyber family forum but obviously her recovery is the most important thing at this time.
At the moment time taken with family problems prevent me from contributing to this site but I just have to respond to this. Paula is one of the people who helped me so much during those first few dark weeks of diagnosis. Even though she has many problems of her own she still manages to find the time to help and support others. Her input to this site is invaluable. i have been wondering how she is getting on, thank you so much for letting us know. Sending love and hope for a speedy recovery. Peggy.
I so hope that all our messages bring you comfort as you recover from this horrible setback. You are such a valued member of our community, so many have reason to thank you for helping them through dark times, hope our messages help you through this, your dark time.
We look forward to having our red squirrel and her common sense and compassion back,
Hello Paula and Peter, I was very sorry to hear of the problems you have encountered, but pleased that prompt action seems to have put you on the road to recovery.
I am fairly new to the site but have noted how much support you give to others, now is payback time.
All love and good wishes for a speedy recovery, Paula. And thank you to Peter for letting us know. It's good to know she has you beside her to support.
So sorry to hear things have taken this unexpected turn, but hoping you will overcome this latest hurdle and soon be back home with your loved ones. Prayers and thoughts with you and your family now and in the coming days and weeks xx
I am very shocked to read about your awful problems. I will think and pray for you in church this morning. It just makes me realise how fortunate I am - sailing along on Ibrutinib with very minor problems. Hope you recover very soon and I wish you lots of luck and much better health before too long.
Paula - so sorry to hear about your situation, but very glad that you have had the necessary surgery and are in good hands. We'll miss your reassuring and calm voice here but please concentrate on getting better. Sending you positive vibes and a big (but very gentle) hug.
Peter - thanks for updating us, and welcome to the cyber family.
C
I'm adding my positive thoughts and very best wishes for a speedy recovery. Once again thanks for all the very helpful advice you have provided. Nil carborundum! Maggie
oh dear me, what a terrible experience. Paula, you are such a caring giving lady, the response to Peter's email shows how highly you are regarded by the community. So often we see 'the little red squirrel' with a caring message, support and love.
I hope you are at the Bexley wing, where I know they will give you a lot of care. get well soon. love hazel and peter
So sorry to hear the news, have been wondering how you were keeping , had noticed you hadn't posted in a while and was missing your reassuring posts to our online family,sending positive vibes and gentle cyber hugs for a speedy recovery,🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻you are in my prayers👍🏻👍🏻👍🏻
I'm so sorry to hear that you are going through this difficult bump. Sending you warmest good wishes, hugs and positive thoughts for a speedy turn around.
Having been offline for a day and thinking of why Paula has not been around for a while I was shocked to learn your news. I don't often pray, but have today for you all, wishing Paula you soon feel better and recover soon to overcome this bump on the road. Nickxx
Hi, I'm sorry to hear this news but glad to hear you have been treated so quickly and successfully, sending love and best wishes for a quick recovery xx
Paula and Peter, saying prayers for both of you. I will be thinking of you both and am so glad you are there for Paula. You have both been through so much. There ar are a lot of people here routing for you Paula. One step at a time.
So sorry to hear that things aren't great at the moment, but on the positive that you are in good hands and are getting the best treatment for a speedy recovery, you are one of the many people on here Paula who has always got a kind word for us who are having a bad time so its lovely to see so many wishing you well...
You will beat this and will soon be back on treatment and into remission, I'm sending lots of positive vibes, loves , hugs to you lovely lady, and I look forward to hearing how well your doing soon...
My goodness me, what a difficult time for both of you and your family. We have all been very shocked to hear of the rapid turn of events and are just glad to hear you are recovering from the operation and are in good hands. Thank you Peter for keeping us informed. Paula has been such a tower of strength and support on this site - I hope she knows how much it is appreciated.
I am sending lots of love and good wishes your way, plus good positive vibes! I'll send an amateur prayer too.
Hi Paula. I'm so, so sorry you are having such a tough time right now. I'm thinking of you and sending every good wish to you tonight. Please god you recover from the operation quickly and are strong enough to resume treatment. In the meantime, hang in there.
Paula, I rarely post as I don't have to much ever to post about yet. However, Ido enjoy all of the posts and responses of all of the members, and you are one of the best. I am so sorry that these bad things are happening after all the time you took deciding on treatment. I am praying for your rapid recovery, and you can get with a better treatment. Many thanks to your husband for keeping us up to date. Prayers for your speedy recovery. We are missing your wonderful post and info sharing.
You are such a special lady, always ready to help others (myself included), and you are so caring and supportive of everyone. I'm so sorry you are having such a rough time, and have had these complications due to treatment. Please know that we are all here for you, and hope that your recovery runs smoothly and swiftly. I hope that you are up and about again soon, and that we'll see that cute little squirrel of yours appear on our screens as soon as you are feeling well enough to say hi again.
Whatever your future holds I know that God will continue to carry each one of you as He has done thus far. There is a wonderful Christian "Footprints" poem that you can google. I hope it helps. Every blessing to you all.
Hi Paula sorry to hear this hope you are on the mend soon.
I can't imagine your spleen rupturing, how awful to go thru that and surgery ! Our Holy Father has you both in his hands and he does small miracles every minute of every day, sometimes so many go unknown by us. I have been praying for you and others as many other members do also and will continue praying. Life can be so hard and you are a special little red squirrel with strength and faith. Soon you'll be booking a flight to have fun with my horses!
Prayers, love, hugs, plus Whisper sends her warm nickers and tickly whiskers for you and Peter too.
I have not been on the threads for awhile. Like others, shocked but relieved when I read this. Speedy recovery Paula! BW to you and your family. Jacqueline xx
Hi Paula I am very new to this forum but the sincerity is real. I hope you the best quickest most peaceful non painful recovery. Hoping you come back to the forum soon to share your experiences that have already helped me and encouraged me as I am newly diagnosed with CLL.
Paula so sorry things have been on a downward swing. Thinking of you and will be saying a few prayers for you and the family as you recover. Look forward to hearing feom you when your strength returns.
Thanks for your prayers, ap64 . However, the post above was from 2 years ago, when I was recovering from surgery for a ruptured spleen. I've had 2 good years since then (till I got increasingly anaemic last summer and needed more treatment).
Your prayers are still very welcome though, as I'm on rather a downward swing again right now.
I've been on Ibrtuinib for 6 months and thought I'd seen the back of the side effects I'd had in the early weeks. However, in the last couple of months I've had a gradually growing rash on my face and arms, then various joint pains started hitting me again. It seemed to start with a pulled muscle in my leg. But as that leg gradually healed, other pains sprung up in other places.
I'm now hobbling round on Peter's crutches (he broke his leg last autumn). My left hand is red, painful and inflamed. I'm taking regular Co-Codamol for the pain - without it I don't think I'd be able to walk or type at all.. I'm also quite nauseated and lost my appetite.
Bit depressing, just as Peter is starting to recover (and doesn't need the crutches any more). At least my rash is much less now, thanks to a steroid cream I was prescribed.
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