Guest guest Posted August 10, 2004 Report Share Posted August 10, 2004 , Thank you for being such a good listener and friend for Karima. She really does need and DESERVES one!! . Have to say though, the stats on your husband break my heart. I'm sure you both have struggled valiantly, and hope that he is at least comfortable. Karima - just hang on tight! I'm on Xeloda...and I seem to be doing very well with it...only 2nd week but so far so good. Hoping and praying you will do just as well. I have been keeping up with your posts, letting the group work it's loving magic. Just wondering too, with your daughters, is this possibly a taboo issue? I know with most folks there is always that squeamishness with these matters, but in some cultures it is more taboo than most. Either way, I hope they come around. Love and patience will conquer. Prayers and best wishes to you all, Sheila Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2004 Report Share Posted August 10, 2004 , Thank you for being such a good listener and friend for Karima. She really does need and DESERVES one!! . Have to say though, the stats on your husband break my heart. I'm sure you both have struggled valiantly, and hope that he is at least comfortable. Karima - just hang on tight! I'm on Xeloda...and I seem to be doing very well with it...only 2nd week but so far so good. Hoping and praying you will do just as well. I have been keeping up with your posts, letting the group work it's loving magic. Just wondering too, with your daughters, is this possibly a taboo issue? I know with most folks there is always that squeamishness with these matters, but in some cultures it is more taboo than most. Either way, I hope they come around. Love and patience will conquer. Prayers and best wishes to you all, Sheila Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2004 Report Share Posted August 10, 2004 , Thank you for being such a good listener and friend for Karima. She really does need and DESERVES one!! . Have to say though, the stats on your husband break my heart. I'm sure you both have struggled valiantly, and hope that he is at least comfortable. Karima - just hang on tight! I'm on Xeloda...and I seem to be doing very well with it...only 2nd week but so far so good. Hoping and praying you will do just as well. I have been keeping up with your posts, letting the group work it's loving magic. Just wondering too, with your daughters, is this possibly a taboo issue? I know with most folks there is always that squeamishness with these matters, but in some cultures it is more taboo than most. Either way, I hope they come around. Love and patience will conquer. Prayers and best wishes to you all, Sheila Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2004 Report Share Posted August 10, 2004 I am so sorry,it is they who will have great regrets. I just read your post about the chemo.My husband has taken both xeloda and oxaliplatin,but at separate times.I guess we have been very fortunate to have had excellent insurance coverage(a benefit of my job)thru this whole ordeal.They have paid everything(minus our small copays/deductibles)When he was on the xeloda it was handled like a regular prescription and we paid our $15/perscription and that was it.All of the other chemo regiemes he's been on(there have been 4 different ones) were paid totally,including some that were $13,000/treatment. I'll keep you in my prayers! God will find a way! Hugs & Prayers, H. S/O " Hubby " ,52/diagnosed inoperable stage IV cc 7/31/03 6/1/04 started 4th-line chemo of folfox 4,CEA 1150 7/22/04 CTs show significant tumor growth/disease progression, CEA 1252,chemo discontinued ] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2004 Report Share Posted August 10, 2004 I am so sorry,it is they who will have great regrets. I just read your post about the chemo.My husband has taken both xeloda and oxaliplatin,but at separate times.I guess we have been very fortunate to have had excellent insurance coverage(a benefit of my job)thru this whole ordeal.They have paid everything(minus our small copays/deductibles)When he was on the xeloda it was handled like a regular prescription and we paid our $15/perscription and that was it.All of the other chemo regiemes he's been on(there have been 4 different ones) were paid totally,including some that were $13,000/treatment. I'll keep you in my prayers! God will find a way! Hugs & Prayers, H. S/O " Hubby " ,52/diagnosed inoperable stage IV cc 7/31/03 6/1/04 started 4th-line chemo of folfox 4,CEA 1150 7/22/04 CTs show significant tumor growth/disease progression, CEA 1252,chemo discontinued ] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2004 Report Share Posted August 11, 2004 I suppose they are scared to see you this way. The funny thing is that after being at our cancer center for a year I have found it hard to distinguish who are the patients and who are the caregivers. You say your sister talked to them. your sister sounds very supportive. Lean on her I am sure she will be there for you. Your daughters will come around in time I pray as they see you fight this thing. You sound like such a lovely person. Don't let all this get you down. The surgery and the chemo will work to strengthen you and in time hopefully defeat this beast. I wish I could tell you it will be easy. It won't be. But with prayer and a possitive hopeful attitude know that there is a light at the end of the tunnel. There are many who care about you both where you are and right here on this board. May our loving God hold you in the palm of His hand. Hugs & prayers Peace be with you Narice caregiver to Phil diagnosed June 19, 2003 Stage 4 with multiple liver mets (Initially thought to be pancreatic) July 2003- Severe swelling, Some Jaundice PCP tells us NOT to seek treatment. We begin treatment with Dr. Jan Rothman at Regional Cancer Center Erie, PA 5FU, Leucovorin, Oxilaplatin August 2003- Phil's weight drops from 165 to 135 September 2003- Phil goes off diuretic (oops) In late September he has CT showing significant reduction of tumor. ;-) December 2003- Tumor stable side effects so far are minimal some flu like symptoms with the Oxilaplatin, dry chapped hands and occasional nausea March 2004- Weight gain of 20 lbs (fluctuates between 155-160) Tumor still stable, (13 cm in colon multiple liver mets. Largest being 9 cm April 2004 1 month chemo break YIPEEE!!!!! April 21,2004- Phil starts on new chemo 5 FU, Leucovorin, Oxaliplatin AND Avastin via 46 HR pump. Weight 160. 4/23 Mouth sores developUsing *magic mouthwash*. CEA 2.5 down from 3.5 before Avastin Low red & white counts Dr. states *You could be the poster person for chemo response, when I first saw you in the hospital last June 2003 I practically had to 'scrape you off the wall.' " :-> 5/17/04 Red & white counts normalized. Platelet count down to 88,000 (normal 150,000. Chemo postponed for 1st time since diagnosi5/24 weight 160 All blood counts at or near normal. Platelets at 122,000 June 2004 One year and still here Chemo June 17 Severe mouth sores develop platelets drop to 49,000 150,000 normal White counts drops to .09! Normal is 4.5 Starts week of Neuprogen to boost white count on July 1 7/7/04 Blood Counts normal chemo resumes July 2004 CHEMO BREAK yipeee!!!!! 8/3/04 Chemo resumes FOXIL + Avastin Bleeding gums (probably due to dental work), dark urine resolved by week's end. Blood counts still normal God's blessings to all on this journey! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2004 Report Share Posted August 11, 2004 I suppose they are scared to see you this way. The funny thing is that after being at our cancer center for a year I have found it hard to distinguish who are the patients and who are the caregivers. You say your sister talked to them. your sister sounds very supportive. Lean on her I am sure she will be there for you. Your daughters will come around in time I pray as they see you fight this thing. You sound like such a lovely person. Don't let all this get you down. The surgery and the chemo will work to strengthen you and in time hopefully defeat this beast. I wish I could tell you it will be easy. It won't be. But with prayer and a possitive hopeful attitude know that there is a light at the end of the tunnel. There are many who care about you both where you are and right here on this board. May our loving God hold you in the palm of His hand. Hugs & prayers Peace be with you Narice caregiver to Phil diagnosed June 19, 2003 Stage 4 with multiple liver mets (Initially thought to be pancreatic) July 2003- Severe swelling, Some Jaundice PCP tells us NOT to seek treatment. We begin treatment with Dr. Jan Rothman at Regional Cancer Center Erie, PA 5FU, Leucovorin, Oxilaplatin August 2003- Phil's weight drops from 165 to 135 September 2003- Phil goes off diuretic (oops) In late September he has CT showing significant reduction of tumor. ;-) December 2003- Tumor stable side effects so far are minimal some flu like symptoms with the Oxilaplatin, dry chapped hands and occasional nausea March 2004- Weight gain of 20 lbs (fluctuates between 155-160) Tumor still stable, (13 cm in colon multiple liver mets. Largest being 9 cm April 2004 1 month chemo break YIPEEE!!!!! April 21,2004- Phil starts on new chemo 5 FU, Leucovorin, Oxaliplatin AND Avastin via 46 HR pump. Weight 160. 4/23 Mouth sores developUsing *magic mouthwash*. CEA 2.5 down from 3.5 before Avastin Low red & white counts Dr. states *You could be the poster person for chemo response, when I first saw you in the hospital last June 2003 I practically had to 'scrape you off the wall.' " :-> 5/17/04 Red & white counts normalized. Platelet count down to 88,000 (normal 150,000. Chemo postponed for 1st time since diagnosi5/24 weight 160 All blood counts at or near normal. Platelets at 122,000 June 2004 One year and still here Chemo June 17 Severe mouth sores develop platelets drop to 49,000 150,000 normal White counts drops to .09! Normal is 4.5 Starts week of Neuprogen to boost white count on July 1 7/7/04 Blood Counts normal chemo resumes July 2004 CHEMO BREAK yipeee!!!!! 8/3/04 Chemo resumes FOXIL + Avastin Bleeding gums (probably due to dental work), dark urine resolved by week's end. Blood counts still normal God's blessings to all on this journey! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2004 Report Share Posted August 11, 2004 I suppose they are scared to see you this way. The funny thing is that after being at our cancer center for a year I have found it hard to distinguish who are the patients and who are the caregivers. You say your sister talked to them. your sister sounds very supportive. Lean on her I am sure she will be there for you. Your daughters will come around in time I pray as they see you fight this thing. You sound like such a lovely person. Don't let all this get you down. The surgery and the chemo will work to strengthen you and in time hopefully defeat this beast. I wish I could tell you it will be easy. It won't be. But with prayer and a possitive hopeful attitude know that there is a light at the end of the tunnel. There are many who care about you both where you are and right here on this board. May our loving God hold you in the palm of His hand. Hugs & prayers Peace be with you Narice caregiver to Phil diagnosed June 19, 2003 Stage 4 with multiple liver mets (Initially thought to be pancreatic) July 2003- Severe swelling, Some Jaundice PCP tells us NOT to seek treatment. We begin treatment with Dr. Jan Rothman at Regional Cancer Center Erie, PA 5FU, Leucovorin, Oxilaplatin August 2003- Phil's weight drops from 165 to 135 September 2003- Phil goes off diuretic (oops) In late September he has CT showing significant reduction of tumor. ;-) December 2003- Tumor stable side effects so far are minimal some flu like symptoms with the Oxilaplatin, dry chapped hands and occasional nausea March 2004- Weight gain of 20 lbs (fluctuates between 155-160) Tumor still stable, (13 cm in colon multiple liver mets. Largest being 9 cm April 2004 1 month chemo break YIPEEE!!!!! April 21,2004- Phil starts on new chemo 5 FU, Leucovorin, Oxaliplatin AND Avastin via 46 HR pump. Weight 160. 4/23 Mouth sores developUsing *magic mouthwash*. CEA 2.5 down from 3.5 before Avastin Low red & white counts Dr. states *You could be the poster person for chemo response, when I first saw you in the hospital last June 2003 I practically had to 'scrape you off the wall.' " :-> 5/17/04 Red & white counts normalized. Platelet count down to 88,000 (normal 150,000. Chemo postponed for 1st time since diagnosi5/24 weight 160 All blood counts at or near normal. Platelets at 122,000 June 2004 One year and still here Chemo June 17 Severe mouth sores develop platelets drop to 49,000 150,000 normal White counts drops to .09! Normal is 4.5 Starts week of Neuprogen to boost white count on July 1 7/7/04 Blood Counts normal chemo resumes July 2004 CHEMO BREAK yipeee!!!!! 8/3/04 Chemo resumes FOXIL + Avastin Bleeding gums (probably due to dental work), dark urine resolved by week's end. Blood counts still normal God's blessings to all on this journey! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2004 Report Share Posted August 21, 2004 Karima, Please be strong I know it is hard but you do have a support system of sorts. That is this board. Know that you are in our prayers and we will be here to listen to you and even try to help with whatever we can. I am a parent of two children 16 and 14, it scares me to think that they will not have their mother when they need her most. When they get married, have children or accomplish the things I have tried to lead them to. I often wonder why me but I then say if not me then who? I love my family and am so so scared to leave them. I don't think it will be soon but it will be sooner than I want. <<<<<<<<<HUGS>>>>>>>>>> Jennie Quote Link to comment Share on other sites More sharing options...
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