Follow up of post 2 months ago .leg pain .

[fish61]

Leg pain , stopped Ibrutinib and started Alacabrutinib ... leg pain non existent after 1 week ...... oncologist may start Vento , but prefers to wait to see how acalabrutinib performs ... also stopped taking Entresto that may have added to the leg problem and surely added to the shortness of breath problem .. leg ache gone in less than a week , shortness of breath took a few weeks but all seems to be resolved , thanks to all for your previous input ..... Acalabrutinib is causing mouth sores ( I can live with ) rashes and severe itching ( controlled by very hot compresses and a 50 gallon drum of cortisone ) .. above side effects better than leg pain .....thanks again for everyone’s input

Fish61

[lankisterguy Volunteer]

Hi fish61,

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Thanks for the update, and we are glad you are able to control the side effects to manageable levels.

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I understand rashes and itching very well as it has been my issue for the last 14 years, and every CLL treatment makes it worse for me.

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I enjoyed the comment about the 50 gallon drum of cortisone, since I have joked about getting bulk truck deliveries of my CeraVe moisturizer so I could bathe in it.

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Len

[fish61 in reply to lankisterguy]

On the serious side , an ancient retired dermatologist friend suggested that before I use the cortisone , I wash the area with a very hot water soaked wash rag ( almost scalding ) ..several times ... then dry the area and apply the cortisone , it seems that the hot water opens the pores and allows the cortisone to work almost immediately and last for about 36 to 48 hours ..

[Toothdoctor]

Hi Fish61

For mouth sores you may want to try the prescription Kenalog Orobase

Happy new year

DLC DDS

[fish61 in reply to Toothdoctor]

Thanks , tooth doctor ... I was hoping someone had a solution as they are unsightly sometimes ... and sometimes uncomfy do they ever go away ?