Originally Posted By RoadTrip Sorry so long... it's been a helluva week. Today Rosie is really much improved. It had been an absolutely terrible week. Her stomach drain tube just had not been draining properly, and that kept her extremely nauseous. Bile and other tummy juices would build up and make her vomit. It was also leaking terribly around the tube so her clothes were constantly drenched with the nasty stuff. We had an oncologist appointment scheduled for Monday but she was so ill we could not go. I took her to the emergency room and they gave her a bunch of IV anti-nausea drugs and she was slightly better for a while. Tuesday Rosie was still extremely ill and she was still leaking around the drain tube. We had rescheduled the oncologist for Tuesday and even though Rose did not feel well we were able to make the appointment. The oncologist's nurse obviously saw how miserable she was and asked if we had seen the surgeon. I told her that we had seen the surgeon because of the problems three times in the three weeks Rosie had been home, but nothing he did seemed to help. She told me to call the surgeons office and say we HAD to see someone that afternoon immediately after the oncologist appointment. She also said to really emphasize just how bad the situation was. She said sometimes doctors get so used to people complaining that if you don't REALLY let them know how bad things are they tend to overlook it. We went to the surgeons office and he flushed the tube so it started draining properly, but it also leaked worse than ever around the tube. He said that he would replace the current 20-millimeter tube with a 22 mm tube. He thought that would be less likely to plug and would also minimize the leakage around the tube. We were scheduled to have that done at the Skaggs outpatient center on Wednesday. Wednesday we went to Skaggs and the surgeon replaced the tube. Immediately afterward we could see how much better it was draining and there was virtually no leakage. Rose had been so worn out by the week that she still was "out of it" the rest of Wednesday and most of Thursday. Thursday evening she really started to improve. When we got up this morning she was absolutely the best I have seen her in weeks. She is comfortable and alert. She even asked me for some coffee. For the first time in a couple of weeks I feel some hope. The oncologist is gong to start her on chemo using monoclonal antibodies next week. It is a relatively recent advance in cancer treatment. The most common treatment for peritoneal cancer uses a chemo drug she had been receiving since last February... it obviously didn't work. The next most common treatment greatly increases intestinal secretions. In most people that gives them diarrhea. Since Rosie's intestines are blocked it would back up in her stomach and give her more problems than she has now. So he felt the monoclonal antibodies were the only real option we had. It is far more expensive than other chemo treatments and he was not sure that our insurance would pay for it. He said though that given the situation and Rose being quite young he was pretty sure he could make the case. He was going to call us if the insurance company refused, and we have not heard from him so we are very hopeful. He said the bad thing about the treatment is that it only works in 20-30% of people. He said the good thing is that when it does work it works very well. He said (as we knew) that the chance of complete remission was very remote. But he said that if the treatment worked it would substantially reduce the size of the tumor, which would greatly reduce Rosie's pain and extend her life. He said in a very few instances it even reduces the intestinal blockage to where people can eat again, but he said not to count on that. So after a really dark beginning of the week we see light again. -Jerry
Originally Posted By Tinkeroon Oh RoadTrip...I do so feel for Rosie (and for you!). I will say a prayer that this will be just what she needs! I am so glad she is feeling better. It's too bad that you have to make so much "noise" to get the help from the doctors. But I do imagine that they hear it all quite frequently and tend to have a deaf ear eventually. Which is really a shame. So glad you are looking towards the bright side of this and keeping the hope! Love and Hugs being sent your way! {{{{{{{{{{Rosie and RoadTrip}}}}}}}}}}
Originally Posted By smedley Roadtrip, thanks for keeping us updated. I am happy to hear that Rosie has found some relief and is feeling improved. You sound very positive, and I am keeping everything crossed that she is one of the 20-30% this treatment works for.
Originally Posted By beamerdog RT, please squeeze Rosie's hand and give her a gentle kiss from me. And, please please, remember to give yourself a few moments everyday to recoupe. It's important that you take care of yourself, in addition to Rosie. Are your daughters still home or nearby? Perhaps you could rest on a comfortable chair in another room while they visit and care for their mom. We are all concerned about you, too. terri
Originally Posted By Mr X Jerry, this is so heartbreaking to read! But I do appreciate the updates as I'm sure everyone else does. I hope you have lots more good days and good times, I really, REALLY do. And I hope you find that light at the end of such dark times through this new therapy with the monoclonal antibodies! Miracles CAN happen sometimes, and I hope this is one of those times! Take care!
Originally Posted By magic0214 I dont know you and Rosie as much as other people, but I am very happy she is doing better. My prayers are with your family. I hope is as good as new soon!
Originally Posted By amazedncal2 RT, I think about you and Rosie everyday and always hope that you are having a good one. Thank you for the update, you are a prince for taking the time for your LP buddies. The new meds sound promising and we'll continue to think positively, send good vibes and pray for both of you.
Originally Posted By bloona thank you for the update, Im glad that the surgeon has been able to make a good possitive difference to how she feels, I pray that the treatment works for her. take care.
Originally Posted By ecdc Thanks for the update. Please keep us posted when you can. I'm so glad she's having some better days now.
Originally Posted By friendofdd I cannot even begin to understand how you feel at this time, but I continue to pray for you and your family. Rosie is obviously a strong person. I pray she will continue to be comfortable as the doctors do what they can.
Originally Posted By LuLu I'm so glad that Rosie is having a better day today. I wish her, and you both, many more! Take care of yourselves.
Originally Posted By Mary Poppins Wow, you and Rosy have been through a lot to try and fix her stomach problems. Shows that perserverence pays off. I'm sorry you both have to go through this. {{{HUGS}}} I don't know how you're holding up, but I'm glad Rosie has such a good caregiver. God bless.
Originally Posted By Disneymom443 Thank you for the update, I was thinking about the two of you today on my way to work. I will pray that everying goes well and that the insurance does not deny the new kemo. Things seem to be looing up, I so happy that Rosie is feeling better after a yucky week. Take care(((hugs)))
Originally Posted By tiggerdis_ Oh, RT, I'm glad to hear that things are looking up! Thanks for keeping us up to date.
Originally Posted By TINK-MOBILE Our continued prayers are with your Rosie, stay strong for her, we shall always be strong for you road trip.. love and prayers from the tINK-mOBILE AND sNOW wHITE OXOXOX
Originally Posted By Sara Tonin Miracles happen everyday, why shouldn't it happen for you and Rosie? I'm sending positive, healing thoughts AND praying for Rosie's healing and well being. (I think we should cover all the bases, don't you?
