Adventures with Idelalisib - a ruptured spleen - (Part One)

[PaulaS]

Hi Folks, It’s now over 5 weeks since I had surgery to remove a ruptured spleen. And at last I’m beginning to feel “normal” again. Appetite returning, tummy not painful, no more fevers, cough much less than it was. Phew… A few days ago we went on one of our favourite country walks, and it felt wonderful. I walked through fields, breathing in cool, fresh air and felt so glad to be alive. Hubby said I was walking faster than I’d done for years! I think the little red squirrel may be getting her bushy tail back…

But it’s not been an easy ride…

Going back a bit – my spleen had been the main reason I needed treatment for CLL (after 8 years of Watch and Wait). It had become VERY enlarged, pressing on my stomach so I couldn’t eat normally. I spent a lot of time considering treatment options, but a clinical trial with a new agent sounded a good idea at the time.

So I started on the CALiBRe trial (Just Idelalisib tablets - not a combination therapy). Within a few days, the spleen had shrunk dramatically! I felt GOOD…

healthunlocked.com/cllsuppo...

However, after a couple of months I developed a nasty rash, so was advised to stop the Idela (doctor’s shorthand for Idelalisib), for a while. The rash started to ease off, but within a few days, my spleen had ballooned up to be as big as before. I developed a high fever, was admitted to hospital, and a few days later was diagnosed with a ruptured spleen!

Major abdominal surgery is not fun… I had a nasty cough afterwards – very painful on the stitches. I continued to have fevers every evening for a couple of weeks. I was on large doses of antibiotics, which gave me another itchy rash (and I’d hardly recovered from the Idela rash). Blood tests were “all over the place”. I was very nauseated – hardly ate - and became positively skeletal.

My wound healed quickly though, and I was able to go home a week after surgery. What a relief.. (I wrote a lot more about my hospital experiences, but decided it was too much detail. Let me know if you’re interested and I can p.m it to you.)

Many thanks to all of you who wrote such lovely messages to Peter and me, during those difficult days. It was SUCH an encouragement, to hear from you.

My “adventures with Idelalisib” have brought it home to me, that these are still early days, with these new drugs. They can be lifesavers but unexpected "adverse events" are still being reported... However, right now, I’m gaining energy every day, and feel grateful to be alive.

Paula

[Jph02006]

It's great that you are back on your feet and walking outdoors. Hope things continue to look brighter. What's on tap treatment-wise?

John

[PaulaS Volunteer in reply to Jph02006]

Hi, John, Yes it's great to be back on my feet (though today I've not felt so good).

Treatment is now a big question mark. The doctors have suggested I go back onto Idelalisib soon. Apparently 70% of people who get a rash with it at first, don’t get it again after a break. However, I’ve still got itchy rashes on my back and arms, that are probably due to penicillin. (Due to my lack of spleen, I’ve been told I have to be on penicillin for life…). So, I'm not keen to start anything that might add to the rashes...

How are you doing, with the Idelalisib?

Paula

[Jph02006 in reply to PaulaS]

I hope they can sort things out for you.

I am about 4 months on Idelalisib and 2 months with Ofatumumab. After improving quickly (from about 90k) after starting, my ALC seems to have plateued for the last eight weeks around 25k. Also during the last seven weeks, I have developed very low RBC, Hg & Hct. I have been getting regular infusions of red blood cells while we hope the bone marrow wakes up and starts producing more RBC. Kidney function improved a bit after treatment but that too has plateued with creatinine around 2 and GFR around 35. The doctors do not seem to be too worried, but then again, they dont have the CLL.

I am now moving into getting monthly infusions of Ofa, so another new phase to get used to. My wife and I wont miss the long drives for weekly treatments, though - especially now that winter is closing in on New England..

Best of luck in choosing how best to proceed and I hope you continue to heal.

John

[PaulaS Volunteer in reply to Jph02006]

Sorry to hear about the complications with your treatment, John. I hope your bone marrow does "wake up" soon...

I liked your comment "...doctors do not seem to be too worried, but then again, they dont have the CLL." Made me smile - I've sometimes thought the same thing.

Wishing you well,

Paula

[Foggymind]

So glad to hear you are on the mend Paula, you really had a tough time of it. It's great that you and hubby have enjoyed the fresh air on a lovely country walk, there's nothing like it in my book. Thanks for you potted account of your hospital stay, not very nice for you personally but I found it interesting and useful. (I'll decline the more detailed account of your stay!) As you point out it is still early days with these new drugs but with help of personal experiences of them from folk like yourself we can build a much broader understanding of them.

Take care and wishing you a healthier future

Kevin - Essex, UK

[PaulaS Volunteer in reply to Foggymind]

Hi Kevin,

Nice to hear that you enjoy the country air too.

Yes, I hope that my experiences with Idelalisib will be of some help to others. I'm still trying to think through all the factors that might have caused my spleen to rupture... Apparently my case is a "first"- hasn't happened to anyone else stopping Idelalisib. But it could have been a combination of things that went against me... I'm planning to write more about that later.

I hope you're keeping well,

Best wishes,

Paula

[Peggy4]

Good to hear from you Paula, have been wondering how you're getting on. Glad to hear that you're on the mend after your ordeal. Unfortunately, it's only by the experiences of people such as yourself that these drugs can be refined and improved on. I do hope you continue to be on the up. Warm regards. Peggy

[Dinasantos]

I am happy you are feeling better

Take care!

[Justasheet1]

Paula,

You're a tough bird. I'm glad you're back.

Jeff

[PaulaS Volunteer in reply to Justasheet1]

Not so sure about "tough", Jeff... But it's good to be back...

Paula

[tpetro]

Dear PaulaS,

Great to hear your "voice!" You are right in observing that these new wonderful treatments are still so new although so welcome to us all. We have to proceed with caution as your experience painfully shows us. Your attitude is great and it is nice to see you doing all those normal activities that make life worth living…just a walk in the fresh air…so normal…so exhilarating…so happy for your continued healing! Terry

[PaulaS Volunteer in reply to tpetro]

Hi Terry,

Yes, we do need caution, with these new treatments. Everyone has their own individual responses to things - some side effects are rare but dangerous.

But after a traumatic experience, the ordinary things of life feel even more precious... A simple country walk, seeing rabbits in fields, feeling the wind on my face... Even the mundane stuff like driving to the Supermarket and getting some shopping, felt like a treat...

Best wishes,

Paula

[Oleboyredw-uk]

Hi Paula,

So pleased for you that things are improving.

Best wishes, rob

[zentangle]

Hi Paula,

Great to hear that you're on the mend, after what sounds like a nightmare. What are the treatment options available to you now? Can you restart on Idelalisib?

I have begun my treatment "journey"- first round of CHOP (without R first time). It went well- bit nauseous, but anti- sickness meds held on. I have neuts drop to come in a couple of days and have to inject myself with white blood cell growth stimulant, so we'll see how that goes!

Best wishes to you and your husband,

Steve

[PaulaS Volunteer in reply to zentangle]

Sorry Steve, I replied to another post of yours before I'd taken on board the comments on my own post... Doh... It's very interesting to hear about this new stage in your treatment "journey". A bit different to most people - but then your case is different of course.

My treatment is now unclear... The doctors suggest I go back onto Idelalisib and hope I won't get a rash again. (Apparently only 30% of people do, when trying it a second time). But I'm still scratching myself from a rash that's probably caused by Penicillin V, so I'm in no hurry... I've had enough of rashes. (I have to take the Penicillin V because of having no spleen).

All the best for tomorrow.

Paula

[happyclappy]

Hi Paula, glad things are looking up.

And thanks for the insight into what we have to look forward to!

Pete

[PaulaS Volunteer in reply to happyclappy]

Thanks Pete. But I hope nobody else has a ruptured spleen to look forward to!!!

There were probably other factors that contributed to my spleen problem. But I'm still thinking that through...

Paula

[9876]

Glad you're on the mend and managed to get out for a walk, have Been thinking of you and how you we're getting on, take it easy and enjoy life lv Julia

[june65]

Glad to hear you're on the mend Paula!!! Hope you continue to improve and keep getting out for those walks in the countryside.

June X

[Cammie]

Paula

What a relief that you are now getting back to better health!

I am so pleased for you!

Take your time and don't overdo it as we need to have you back to fighting fitness as soon as your recuperation will allow!

You have been on a rough journey since we saw you last!

Let us know what the medics say about continuation of treatment so we can send our positive vibes along!

All my very best wishes

Geoff

[wroxham-gb]

Great news Paula, something we've all waited to hear. Don't overdo it though. Nag, nag.

Sending gooder best wishes.

Sue

[pumpkin48]

Paula,I am so happy to hear that the little red squirrel may be getting her bushy tail back ! You and your family have been in my thoughts and prayers.It must have felt so good to be out in the fresh cool air,after all you have been through.Thank you for the good news.I hope you continue to feel better each day,sending you a warm hug,Pumpkin

[sun_flower]

Hi Paula ,I am so happy to think you feel on the up after such a rough ride ,onwards and upwards now.How lovely to go for a walk in the countryside as you know I live close to the sea and walk beside it a lot one of my favorite things,take care love Maggiex

[jangreen]

Hi walking is one of my great loves in life. Have you discussed with your medical team about what happens next? It may be nothing just back onto watch and wait (watch and worry). Please give us an update. Best wishes and good luck

[Hidden]

Lovely to hear that you are on the mend and enjoying the good things in life. I've missed your thoughtful comments and helpful advice.

Maggie

[Newdawn Administrator]

Well Paula, I'm hoping 'Part Two' has you fully recovered, successfully back on your treatment and happily walking the hills and valleys with a renewed spring in your step!

You've been through a lot and I hope all the bad stuff has ended now.

Warm best wishes,

Newdawn x

[saintjohn]

Glad to hear things are going well Paula,welcome back xx

[NooNoo14]

Hi Paula

It's so good to hear from you and hear that you are at last in a better place.

I can only imagine how painful it is to have your spleen removed! I am not squeamish so would like to hear the gory details if you want to share (pm).

Sending hugs

NooNoo

[Korstiaan]

Hi Paul,

Nice to hear that you are feeling better now.

Best wishes,

Korstiaan

[Getlucky]

So glad you are feeling better and starting to enjoy life again! I was wondering how things were going for you. Walking is one of my big loves in life too - funny how several of us have said the same thing! Take care, and you can now look forward to a lovely Christmas with your family. x

[meemsdream]

So glad that you are feeling much better. What a trip you have made. I hope the New Year brings more good news and happy days. Maria.

[Ernest2]

Dear Paula,

Apologies I've just got back online.

That really is great news. Hope things are still progressing well and you can enjoy a very Happy Christmas with all the family.

Best Wishes,

Ernest