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whirlwind

krystiesq's picture
krystiesq
Posts: 242
Joined: Jun 2008

Recap: Mom dx '07 stage iv colon cancer. Surgeries: colon resection, omentectomy, ovaries removed, possible mets to liver and lungs. 12 rounds of folfox + avastin. CT scan, disease stable, 8 rounds of 5FU leucov + avastin. CEA began to rise, ordered pet scan. Pet scan, no lung nodules, no metastatic disease to liver, abdomen unchanged since last november, and suspicious activity on thyroid. We were sceduled to see an ENT last Monday. Two Mondays ago doc added campostar. Violent reaction,kidney failure, dropped white blood cell count (under 2), dropped red blood cell count, neutropenic fever, mouth sores, 5 day hospitalization got out yesterday. I learned yesterday that another man who received chemo at the same time as mom, mixed by the same nurse, ended up in the hospital as well only to be told that he had been given a lethal dosage of chemo, enough for a 700lb man and he was a mere 220lbs. He too had kidney failure, and the list of symptoms my mom had. I'm not suggesting that this is what happened to my mom because I am not a doctor nor did the doctors at the hospital where she was admitted do a toxicology report and she got better, well enough to get discharged after five days anyway. I am suggesting that the practice where she was a patient is not up to par.

After much thought and prayer, I made the decision to seek care at a major cancer center asap because I do not feel that she is getting the care she deserved. Today, I made phone calls and spoke to several representatives at major cancer center within driving distance and got my mom an appointment two weeks from Monday (despite a waiting list). I think that my prayers were answered. If anything at least she will be seen by a whole team of doctors and not just one oncologist and will get a thorough (2nd opinion) evaluation. I wish that I had acted sooner but the way that this has fallen into place over the past week seems as if it was meant to be this way. There are too many unexplained coincidences that have aided my actions and decisions. I really can feel the prayers that are being said for both myself and my mom. I have had a surreal sense of peace enter my life and this is not something that I can explain.

Everyone here on this board is so unselfish. I am my mom's caretaker, advocate, amongst other things and usually when I ask for prayers those of you who respond always include me and remind me to take care of myself too. I can't thank you enough for that. Us caretakers would move heaven and earth for our loved ones and it's hard to even talk to someone who isn't aware of what a cancer diagnosis of a family member can do to your life. I hope you all are well today and know that I continue to hold you all in my thoughts and prayers.

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

I'm so glad you were able to get your mom in a cancer center. That will hopefully make things much better! She's blessed to have a wonderful advocate in you.

Just picture me giving you a big hug for all you do for your mom!

Love,
Gail

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

Kristi, I can't believe the scare you and your mother have been through! And to hear that another patient with the same nurse with the same symptoms as your mother was given a lethal dose of the meds... RUN LIKE HEll! So glad you were able to get that quick appointment, and in time for you to relax for the weekend (as much as you can right now!). I am sure you both will be feeling so much better about her treatment from here on out. Definitely proves the point that a second (and sometimes a third and fourth) opinion can be life saving! I continue to pray for you both.
Mary

laudena
Posts: 11
Joined: Sep 2008

I don't understand why the drugs were being mixed by a nurse. Nurses can do a lot of things but that isn't on of them. At the center I go to in Sacramento, only a trained pharmacist can dispense the chemo drugs and they have one on staff. The nurses do double check each other also to make sure they are administering the chemo per the charts instructions. Makes you feel a lot more comfortable with what you are getting. I agree the others that you really need to get to a larger center. I'll keep you in my thoughts.
Allan

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