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Does Anyone Have Central Nervous Cancer? I Was Diagnosed In Sept. Am Currently On Imbruvav

Does Anyone Have Central Nervous Cancer? I Was Diagnosed In Sept. Am Currently On Imbruvav

Imbruvaca

A MyLymphomaTeam Member said:

Yes I do!

I have an interesting story and then I will answer your question :)

I couple of years ago I answered an ad from this company that was coming to Seattle to run a study on people who survived cancer. The interviewed me and the process lasted about 4 hours. The whole gist of the study was to find out how people who survive cancer are doing post cancer. I call it PTCD or Post Traumatic Cancer Disorder. Once you get through with all the doctors, tests, and cancer treatments we get thrown back into society. Most of us have to live with the side affects of the cancer or the cancer meds we took. Most oncologists don't know how or won't deal with your side affects. They tell you to go see a specialist(s). The study was put together to help the pharmaceutical companies and doctors understand that just because the cancer is gone or in remission, doesn't mean the process is over.

So now back to your question about side affects!

Yes, I have some that remained. I did caution my oncologist, the last time we met, that they need to do a better job of preparing cancer patients for the side affects that follow cancer treatments. I told her that she told me nothing of the side affects that will follow.

Imbruvica has something like 31 side affects. I have probably had all 31 but most have gone away after my body got use to the med. I have been on it for 4 years.

Of all the side affects, three have stayed:
Upset stomach - loose bowel syndrome
Muscle cramping - mainly in legs, feet, and hands. Some of this could be due to old age too :)
Peripheral Neuropathy - mainly in my feet. This could have also been the Velcade that I was on early in my cancer treatment.

I have learned to live with each. If you want to know more about how I cope with each, please ask. This note is getting to long :)

Take care and God Bless!

posted 8 months ago
A MyLymphomaTeam Member said:

Me too. Got to watch what I eat.

posted 7 months ago
A MyLymphomaTeam Member said:

Shoot - I take good old Tums too.

posted 7 months ago
A MyLymphomaTeam Member said:

It didn’t work for me.

posted 7 months ago
A MyLymphomaTeam Member said:

Baking Soda! No wonder my cooking never works!

posted 8 months ago
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