TO KATHIE & REBEKAH

mopar

Rebekah:
Saw your post on Bonnie's thread, and wanted to start the thread for you here so you can monitor the responses to your questions.

So sorry Mom's not feeling well. Can they give her any pain meds to ease it up a bit? Is the growth a lymphocele that can be drained to alleviate her pain? I completely understand how uncomfortable she must be, and how helpless all of you feel. Sometimes it's hard to know what to do for the person, and sometimes it's even hard for the person going through it to tell you what would help them. Other than what I mentioned before, is there anything your Mom does to keep her mind off of all of this - reading, hand-work, watching movies, etc.? I know it's probably hard for her to eat and drink right now, and she may not even have an appetite. But it is so important to keep it up as much as possible. Maybe just some small snacks every hour or so, so she doesn't feel overwhelmed with having to eat a huge meal. Keep the liquids nearby, maybe a cup that keeps things cold if she likes that, or even one that keeps things warm like tea.

I wish I could offer more. If you have other specific questions I'm sure we can offer more suggestions. Until then, tell your Mom we miss conversing with her and can't wait till she's back on line. Give her our best, and as always. . .
Love, hugs and prayers to you all.
Monika

kathie687

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

floridajo

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

BonnieR

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

Thank you so much Monika for seeing there message, I don't go back that far when I come on here.

Rebekah, thank you for the update. I am so sorry to hear your mom is having such a rough time. I know how awful one can feel and then to have to switch chemos makes one even feel worse.

Kathy I am sending lots of prayers and hugs your way. I hope you will be feeling well enough to post soon. I miss you.

I know how it is to be in the fight mode for a such a long time and feeling like crap. But also know that it does get better, so you just hold on and we'll all carry you through with our prayers. Love Ya Bonnie

paula2

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

aliced

Try a Fetanol patch for the pain...I am not sure if the spelling is correct, but it worked wonders for my sister...she liked it better that morphine