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CLL Support Association
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Five years ago

I was diagnosed 5 years ago with cll. Tired a lot of the time. Going to doctor every 6 months to tell me no change. Monday I went to the emergency room because I was having chest pain but I also have ddd which is basically arthritis. They did cat scans and saw a mass so I have to go back to get another cat scan to see what the mass is. They say it may not be cancer but I m worried.

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Hi CleanLiver, must be worrying, I always think the sooner I know the facts, the sooner I can work out hoe to beat something. I hope and pray you get a quick diagnosis and a clear treatment path

UK Sparky

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Thank you Sparky. I have grandchildren too and not ready to leave this world. Also a little westipoo dog that adores me and me him.

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Hi cleanliver: Yes a mass could be benign, we pray it is, where is located in chest or abdomen or pelvis.

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They said the liver

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All my prayers

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I'm with you.... I have been going to the doc every 6 months for ten years and went to the doctor in December about a pain in my side. When that didn't clear up, I went back after the holidays (Christmas and Hogmanay) and was sent to A&E. I have lung cancer, with lesions on my liver and rib as well as lots of swollen nodes in there. Going for a liver biopsy on Wednesday to find out how bad it is.... Joan

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So sorry Joan. Hope everything goes well. Keep us posted.

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Reporting in from hospital:-

I'm all touched up in bed with my heparin drip, having had a very nice veg. lasagne then fruit crumble with ice cream. It's good to have a drug (Metaclopramide) which is giving me back my appetite.

However I have been prescribed a variation on my painkillers and also had a thorough x-ray done of my hip at last! The pain when weight-bearing was disabling and it's all down my right side. Think I told every doctor I saw that I had a new pain in my hip, gradually getting worse. (Sooo grateful to the Red Cross for being able to borrow a wheelchair, fuss-free as well as completely free.)

All in all, very relieved to be here for my liver biopsy tomorrow, and hopefully results of the x-ray.

When are you having your next scan, Cleanliver?

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My doctor called me the same day and said I didn’t have a mass and that my liver is a little enlarged. I feel blessed. Hope everything goes well for you

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What a scare for you though! I hadn't appreciated the liver was so large until I went for the biopsy (a pain-free experience). Nothing showed on the x-ray so I'm still in hospital waiting for another scan, then the results of the biopsy.

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Hope everything goes ok for you Jabb.

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Not good. Apparently my hip is riddled with cancer and may break if I put weight on it. I'm waiting for radiotherapy and a pin. Still waiting on biopsy results.

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Jabb,

We’re rooting for you to turn the corner on this.

🙏🏻

Jeff

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Thank you Jeff, That's very kind but I'm feeling somewhat pessimistic today. Joan

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Understandably so.

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🙏🏻

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Checking in, after seeing my Haematology doctor yesterday.

That appointment felt like a real waste of time! I've now to get my bloods done every 4 months (instead of 3) as I've plateaued with the CLL. No hint of why I have lung cancer and is there any link to the CLL, etc. I did let her do all the talking first - nothing - before I said about the reactions, allergic and otherwise, which she noted. I think she was hoping it would be quick, because she was running late....

If you don’t already know, it’s all lung cancer, with no ‘normal’ lung cancer symptoms, apart from the breathlessness. After double doses of radiotherapy (with bad reactions) on ribs and hip, I was pleased to have no more pain in my side. However, I still can’t weight-bear on my right hip so have a zimmer, elbow crutches and sold my electric bicycle to buy a lightweight folding wheelchair.

I am now on Crizotinib, as indicated by the liver biopsy. As a side effect could be severe acne, I also was prescribed Doxycycline. Already allergic to Penicillin and Sulphonamides, I’m now allergic to Doxycycline, which caused a most interesting, itchy rash. Ten days wasted there and several days to recover, but this is now my fifth week back on the Crizotinib. I am still getting daily injections in my stomach because of the blood clots in both lungs.

However, after a few weeks at home, with several adjustments needing made, I am now enjoying the sunshine and wildlife (red squirrels, woodpeckers, various tits, etc) from the window of our static caravan. My family and friends have been great and I’m counting my blessings.

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Wishing you the best at this difficult time.

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Thank you Judyanne. I am so grateful I found this website yesterday. It helps knowing that other people have the same worries as me.

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Sending huge best wishes for a good outcome Joan and also to you Cleanliver. Worrying times but stay strong and hopeful and our support is with you.

Newdawn

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Thank you Newdawn. Trying to keep positive and that’s why I chose the name Cleanliver.

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I wondered... Thank you for your and Newdawn's good wishes - it really helps.

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Sending lots of positive thoughts to both of you while you wait for test results. The waiting is the worst.

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Such a worrying time for you and Joan. I really hope for a good outcome for you both.

Maureen UK

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Waiting is the worst! I hope you learn your results soon to relieve yourself of the stress. Best wishes.

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