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CLL Support Association
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Kidney stones on veneclexta and Gayzva

Anyone experiencing this ? Spent the day in emergency room yesterday and still in tremendous pain and lidocaine patches not pain killer work ????

I have had these ten times at least in past but literally can barely breathe now without the stabbing pain ...:

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Oh Liss I am so, so sorry you are going through this all over again ! I just hope the pain clears soon! I hope you got to spend some time at the beach.

Sorry I can not say anything re the pain.

Lots of love and best wishes

Coco xxxxx

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I want to echo everything Colette has said Liss, I am so very sorry this is happening!

Sending lots of love,

Debbie

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Hei huni!

I know kidney stones are awful things. I never had one but knew someone who had it. She said sometimes the doctors can give you something to dissolve them without operation and other times you just have to wait till you pass them naturally.

Operating seems to be a last resort scenario.

Have you seen your doctor yet?

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CLL changes so much -- if your lymph nodes are still pressing on things, then there is less space for kidney stones and inflammation of kidney(s) and so on, so it is probable that the pain is worse than on previous occasions.. Maybe. So sorry.

How were they removed previously? Have your doctors given any indication of whether they can do something this time?

What are they suggesting? Sounds like a medical emergency to get consultant opinion.

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I suffered from a few bouts of kidney stones and then several years ago my doctor tested my blood calcium level and it was elevated. It turned out that I had a benign tumor on my parathyroid gland that was causing the increase in blood calcium. I had it surgically removed and (knock on wood) I haven't had one since, seven years ago. This happened several years before my CLL diagnosis. Best wishes!

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Apparently kidney stones are as painful as childbirth so you have my utmost sympathy, especially if you're not getting enough pain relief. Drink lots and try to flush those pesky stones out.

Life must be pretty miserable at the moment, I hope it passes (!?) soon x

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Haven't heard any direct relationship to kidney stones to CLL treatments, not to say there aren't any. Just know they are excruciatingly painful. My husband has one, which showed up on the CT scan but fortunately it hasn't moved so he's not in any pain.

Really hate to see you go through this in addition to everything else. Hope it passes soon and you get some relief.

XOXO,

D.

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Luckyliss

How are you? I am fairly new here but have read your post and was just wondering how you were doing?

Thank you

Jackie

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I have been in the hospital for three weeks now and after adding a Hickman port and having another biopsy I am now apparently to try the bendamustine chemo w the Gayzva and then add in inbritibub to set me up for a umbilical cord bone marrow transplant ..... we are so confused bc they swore it was richters when my belly swelled so huge and now it went down to almost flat again and it’s complicated bc they now don’t wanna do the epoch.... ugh can’t see straight anymore

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I am so sorry to hear your not well. Prayers that things start to get better for you. I have not seen you post anything in a well and was just thinking about you. After being on here for over six months and seeing everyone post things about their CLL journey and then not hearing anything for a time I wanted to check up on you. Maybe with the new meds they will help. You are in my prayers! Please keep in touch

Thanks for letting me know!!

Jackie

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