An unusual case?: I was diagnosed with stage... - CLL Support

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An unusual case?

Jabb-UK profile image
25 Replies

I was diagnosed with stage 4 lung cancer, metastasised to ribs, hip and liver in January this year after having CLL for nine years.

The targeted drug, Crizotinib, isn’t working so the cancer is now in my pelvis and back as well as the foot of the spine. I’ve to get 5 sessions of radiotherapy there because of the pain and I’m practically bedbound.

A discussion is being held about my case today as it is unusual, with any further treatment discussed. Immunotherapy was mentioned but the CLL probably knocks that one on on the head?

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Jabb-UK profile image
Jabb-UK
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25 Replies
Susiecarer profile image
Susiecarer

Not sure what to say really......just hope pain is well controlled and I’m sending you a BIG GENTLE HUG .

Susiecarer x

Cllcanada profile image
CllcanadaTop Poster CURE Hero

So sorry to hear of your situation... Jabb...

I can't comment on your case, but I share metasticised secondary cancer to the liver and lung... I was treated one round for it and it included an immunotherapy... bevacizumab.

I was also on Zydelig (idelalisib) for CLL and there were no direct conflicts, however the drugs started a chain reaction of invassive fungal infection to the lungs and sinuses, ears etc., C. diff, bacterial pneumonia, and massive edema.... primarry due to a highly previously damaged immune system...

In retrospect, I think while I was quite damaged by this treatment for adenocarcinoma, it did weaken the cancer for the past 6 months, primary in my lungs and liver...

Now I'm off all treatment, save for antifungals to stop brain involvement... so I'm living out my life...

I hope your discussions are positive... I'm of the 'you need to break a few eggs to make an omelette' camp... I also have had radiotherapy to my L2 vertebrae and it made me very ill, but it did improve in time.

~chris

Jabb-UK profile image
Jabb-UK in reply toCllcanada

Good grief! I’ve just looked at this and thought that if you can get through it, so can I.

Thanks for this, but is it unusual or not?

Cllcanada profile image
CllcanadaTop Poster CURE Hero in reply toJabb-UK

Exactly, and you willl 😃, sometimes knowing what others go through, helps us focus.

Unusual... each case is different, but certainly this is one path in CLL. I have known quite a few patients that have similar, but different situations.

I have also been cured of a Richter's transformation... but it was 6 years ago and is water under the bridge at this point.

Hang in tnere...

~chris

Psmithuk profile image
Psmithuk

This sounds tough. Sending you lots of positive vibes, and another big (gentle) hug after Susiecarer's one!

Loweez profile image
Loweez

I am sorry you are dealing with that. I hope your fighting spirit and the work of good doctors gets you through this tough time. Sending all good vibes your way

PaulaS profile image
PaulaSVolunteer

I'm so sorry about your situation, Jabb but thank you for getting in touch. I had wondered how you are.

How did the discussion go today, that was being held about your case?

Sending gentle hugs, hope and prayers from Sheffield,

Paula x

Jabb-UK profile image
Jabb-UK in reply toPaulaS

Hi, Paula,

I’m back in the CLL Community after skulking in the lung cancer one for a while.

I’ll probably find out more tomorrow when I go for the planning meeting (got the phone call from the radiotherapy department this afternoon).

Just thinking about what else we have to cancel - a trip at the end of next week to Cardiff and our caravan at the Malverns probably. Hey ho. I’ll wait to see what tomorrow brings.

Thank you for getting in touch again,

Joan

PaulaS profile image
PaulaSVolunteer in reply toJabb-UK

Hi Joan,

Hopefully things will be clearer after you've had the planning meeting today. Let us know how it goes - maybe you'll still be able to go on some of your trips, or plan some other nice things to look forward to...

Thinking of you,

Paula x

Flabal profile image
Flabal

Hi Jabb-UK

Truly sorry for the overwhelming news.

Ashmom profile image
Ashmom

Jabb, I’m very sorry you’re going through such a difficult time. I wish you strength and luck to pull through.

Ash

Name-1 profile image
Name-1

I am sorry ,Jabb-UK.Good luck!

JigFettler profile image
JigFettlerVolunteer

Respect!

Warmest bestest wishes!

Jig

Bubnojay profile image
Bubnojay

My long message on your previous post disappeared into the webs black hole. My partner whose prostate cancer had metastasied into numerous bones was experiencing horrendous pain in coccyx and sacrum. He had a deeper than normal bone radiotherapy that eased the pain considerably, no doubt it will come back but it has beaten back the pain for now. So hope you have similar relief.

No easy journey, but with tears and hope we struggle on through it. He had a bone scan last week and we await results.

I wish you the strength and support, not forgetting hope that the future will be easier for you.

Bubnjay1

Jabb-UK profile image
Jabb-UK

I am sorry you lost your previous post - so frustrating! (and I would to have liked to have read it)

Thank you for letting me know about the good results of radiotherapy for your husband.

(Now the rest of this message disappeared twice!)

To continue, I was feeling more concerned about having the radiotherapy this time because it was at the base of the spine and so much could go wrong.

The radiotherapy worked fine before, on ribs and hip, but of course I have that reaction - which is unusual. On the first, third and fifth burst, I went 'into shock' (but they called it 'puo'). Did it again when I was an outpatient getting the left rib done so at least my husband could see it. This time I'm not going home until after the two hours it usually takes!

Thank you again for getting in touch and please let me know how it goes with your husband.

Joan

I wish there was something I could think of to tell you. I am hoping and will be praying that the doctors find something that will help you and that they can relieve your pain so that you might be able to get out of bed for a bit. Please let us know how you're doing.

migirlusa profile image
migirlusa

Oh dear so many things to contend with. Sending you loving, healing thoughts.

Pam

casanova profile image
casanova

I can only send you best wishes jabb-UK

and hope you have a positive meeting tomorrow.

Maureen UK

Donnamccll profile image
Donnamccll

Hugs from Texas Jabb.

Jabb-UK profile image
Jabb-UK

Feeling better today, i.e. less sore and wondered why. Yes, the 'nerve pain' drug, pregabalin must be working but also because I haven't been out and about/to the hospital.

I like to think I am always optimistic and positive though Monday was a low point. Yesterday, following the planning meeting when I was marked up for the radiotherapy starting next Monday, I had a meeting with my specialist and she was able to tell me that it's okay for me to go on the Ceritinib! Hurray!

Thank you to all of you rooting for me xxx Joan

PaulaS profile image
PaulaSVolunteer in reply toJabb-UK

I'm so glad you felt better today, Joan.

Wishing you all the best as you start on the Ceritinib..

More hugs from Sheffield,

Paula xx

Jabb-UK profile image
Jabb-UK in reply toPaulaS

Loving the hugs though we're a bit restrained here in Edinburgh.

Thanks from Joan xxx

PaulaS profile image
PaulaSVolunteer in reply toJabb-UK

You'll have to start a new trend, Joan, of hugs amongst the Scots! :-)

I've just noticed that it's gone half past midnight. Time we both got some sleep :-)

Paula zzzzz

Jabb-UK profile image
Jabb-UK in reply toPaulaS

Okay, dear.

BeckyLUSA profile image
BeckyLUSA

So sorry for what you are going through. Consider this a big warm hug!

BeckyL USA

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