On 6/30/2009
570sheila wrote:
Hello....I hope you are well. Will you PLEASE leave us know HOW YOU ARE DOING and IF you gotten any help with your meds.??
Hugs Sheila
Hi, Sheila. It's Shotgun again. Thought I'd give you an update. I started 50 mg of Sutent on July 3rd. Except for nausea, I tolerated it very well until I was between the 2nd and 3rd week of the 28 day plan. I was prepared for one or two side effects, but I got nearly ALL of them and they just kept piling on. I got extreme nausea so bad I couldn't eat for 3 days. The prescription anti-nausea med they gave me ceased to work so the called in a new script increasing the dose from 4 mg to 8 mg, but my pharmacy plan with Humana refused to fill it saying I can only get 30 pills in any 30 day period and I already had 30 pills. So I started taking 2 instead of 1 to get the 8 mg dose and it helped tremendously, but obviously used up my 30 pills quickly. Then my mouth got sore including a huge ulcer that formed on my tongue and another started on the other side. My gums bled when I brushed my teeth and my mouth was too sore to eat and swallowing became difficult. Then extreme fatigue set in. Then more shortness of breath than usual (I also have CHF & COPD which cause shortness of breath). Then diarrhea started. Then my temperature went up to 101.5 while my blood pressure dropped as low as 69/35. Then soreness set in my neck and shoulders to the point I couldn't walk straight up and had to 'hunch over' to get some relief. My wife has been my faithful 'caregiver' and she dropped me off in front of a doctor's office while she went to park the car. On the way in she tripped over some uneven pavement and shattered her knee cap and broke her wrist. She is fine except mostly immobile. They did surgery the next day and kept her in the hospital for 5 days. Meanwhile, I was so sick with the side effects of Sutent, I couldn't even go see her in the hospital. She is home now and one of our friends knowing I don't cook, asked over the phone "who is doing the cooking?". My wife's answer was "no one, we are living by the kindness of strangers". We live in one of those 'active seniors' apartment complexes where you have to be 55+ to live here. As word spread about our plight, those good Texas neighbors started showing up at the door bringing cooked food. When it started, I was still terribly ill from the Sutent and just the thought of food would set off a wave of nausea. I stuffed food in the fridge until it filled up, then I filled the freezer until it ran out of room. I couldn't turn down these kind people and tell them I had no more room for food after they had gone to all that trouble and expense, so I just kept taking it in while trying to stifle the nausea it was causing. So, I've become the caregiver for both of us. All these side effects set in over the weekend, but as soon as my oncologist's office opened on Monday I placed a call. The nurse said she would talk to the doctor and call me back. Time came for me to take the Sutent, so I took another one. About an hour later, the nurse called and said to stop taking the Sutent immediately, and I'd just taken another one. That night was the worst of all. Fever, chills, etc. By the next day as time went on without taking Sutent, the side effects slowly went away and I'm back to normal and can take care of my wife. Her surgeon ordered 'home health care' which I didn't know existed, but apparently Medicare will pay for a nurse to come by a couple of times a week to check on her, and even sent the physical rehab people by our home to help her recover. When our family doctor found out about our situation, he ordered home nursing for me too so I will be having a nurse stop in a couple of times a week to check on me. Meanwhile, a friend in NC is driving to Texas to help us with the daily chores. I've come to learn as I've had to do all the household things that a woman's work is never done. <grin>. Oh yeah, they also are sending in a woman to help my wife bathe twice a week, and she is staying clean in between using 'baby wipes' (what a great invention). In summary, things have been tough, but we've made it through the worst of it, and things are looking up. I go see the oncologist next week and he says he will try cutting the Sutent back to 37.5 mg and see if I can tolerate that. If not, we will switch to a different drug. And all that food I stuffed in the fridge and freezer is coming in handy now. Best regards,
Shotgun