TO KATHIE & REBEKAH

kathie687 said:

Thanks Monika....I was wondering where the message went. I was about to repost it. I appreciate your note. We are trying most of the things you mentioned and some appear to be working. We are just taking it day by day. Here is my original message (sorry for my tech issues!)


Hello everyone, this is Rebekah again, Kathie's daughter. I wanted to give you a quick update on my mom as she is still not feeling well enough to update you herself. The last couple of weeks have been rough. She is still in a lot of pain and is very fatigued, in part because she is having trouble keeping anything down which has resulted in her losing weight. Unfortunately we do not think her current treatment of Gemzar/Cisplatin is working. Her CA 125 continues to climb and she has developed a sizeable growth in her abdomen since surgery 2 months ago. Her doctor plans on switching her to a non-platinum drug, Doxil, soon if she continues to not respond. The hardest part for her is that she just hasn't had a, "good" day in so long, which I am sure you can all understand. She is trying to keep her spirits up but it's just so hard when she doesn't feel well. Any suggestions you guys have on ways our family can show her support to help her through this rough period would be greatly appreciated. We obviously try to be there for her and listen, but it's hard because having not gone through this ourselves, we never truly understand her daily struggles. We wish all of you the best and you are always in our thoughts and prayers. Thanks for your support. Rebekah

Hi Rebekah,
I'm so sorry to hear that the chemo isn't working for your Mom..I would ask the Dr. to switch her now..why wait??especially if it shows signs of no improvement?? What is she taking for the nausea?? I have been on Kytril, Compazine,Phenergan and Emend. The best was the Emend (very expensive) The compazine she could take for break through nausea..I find it does make me tired , but it always makes me feel better.Also what is being done to control her pain?? Call the Dr. and tell him about this, there's no reason for her to be in pain..and it's his job to help her feel better. Until he gets her pain and nausea under control..she will continue to feel bad. I know alot of people say that the pain med makes them nausous, but that could be made easier if she took a pain pill with a nuasea med. I hope I'm helping sme...I know you have probably have already talked to the Dr. about these issues, but he needs to do something else..and if he can't handle it, have him refer her to pain mngmt. They really helped me alot!!!! Good luck, my prayers to your family and your sweet Mom...((((hugz)))..Joanne

kathie687 said:

Thanks Monika....I was wondering where the message went. I was about to repost it. I appreciate your note. We are trying most of the things you mentioned and some appear to be working. We are just taking it day by day. Here is my original message (sorry for my tech issues!)


Hello everyone, this is Rebekah again, Kathie's daughter. I wanted to give you a quick update on my mom as she is still not feeling well enough to update you herself. The last couple of weeks have been rough. She is still in a lot of pain and is very fatigued, in part because she is having trouble keeping anything down which has resulted in her losing weight. Unfortunately we do not think her current treatment of Gemzar/Cisplatin is working. Her CA 125 continues to climb and she has developed a sizeable growth in her abdomen since surgery 2 months ago. Her doctor plans on switching her to a non-platinum drug, Doxil, soon if she continues to not respond. The hardest part for her is that she just hasn't had a, "good" day in so long, which I am sure you can all understand. She is trying to keep her spirits up but it's just so hard when she doesn't feel well. Any suggestions you guys have on ways our family can show her support to help her through this rough period would be greatly appreciated. We obviously try to be there for her and listen, but it's hard because having not gone through this ourselves, we never truly understand her daily struggles. We wish all of you the best and you are always in our thoughts and prayers. Thanks for your support. Rebekah

I would contact the doctors. She should have full pain relief. Like Joanne said, that's their job. She should at least be made comfortable. I attend a hospice 'wellness' group and once a hospice nurse came and talked with us. She emphasized that hospice care would prioritize pain relief to a patient's wishes. Also, when I had terrible pain this year and tumor growth in the abdomen, the group leader told me to call the doctor and keep calling until I had satisfaction. So, you are within your rights. Be sure, if she switches to Doxil, to follow all the warnings with this drug. She will not do well to have deal with rashes or blistering, as many of have. (Mainly, avoid all heat and tight clothing.)
It is very hard to recover from surgery and take chemo. Such a demand on the body. You are wonderful daughters to be looking out for her this way. Maybe get her to tell you some of her memories.. stories, break out the baby pictures? Help her stay hydrated.... broths, gatorade, smoothies with added vitamins, juices, cream soups if she can take the dairy. You could try music and headphones, guided imagery, funny movies. Sometimes we really want to be alone and don't know how to say so. For me, the pain issue would be #1. From there, you can make other decisions. Be sure to stay regular with pain meds, using sennakot or other laxatives to keep moving. That can be a real discomfort too. I avoided pain meds for awhile until I figured out how to regulate. Nausea could subside if she was on a continuous release drug and the body adjusted. I remember a chemo nurse telling me that they had a pill for everything. Keep trying.
Many prayers and good thoughts sending your way. Tell Kathie that we are thinking about her and send her love and gentle hugs and all good wishes for strength and wellness.
Paula2