Guest guest Posted November 1, 2005 Report Share Posted November 1, 2005 Hello All! I have been reading many your posts for a while now and they have been helpful and supportive in dealing with this horrific disease. What a wonderful community this group is! I am now in need of some specific help and I hope someone out there can provide me with some guidance. My mom Sharon, who is 62, was diagnosed with Stage IV Colon Cancer on 5/24/05. Her colon cancer tumors have spread to her entire pelvic area (ovaries and uterus) and some lymnodes. She originally had 19 radiation treatments coupled with a small amount of chemo. She has just completed her 4th straight chemo treatment (she gets 48 hours continuous every 2 weeks.) Her treatment protocal is for 12 total treatments. After the 3rd treatment she developed what I learned (because the doctors didn't identify it right away) was lymphedema because her tumors are pressing on her lymph nodes. This made her legs swell like tree trunks and very painful and constantly " weeping " . She was given antibiotics and put into compression hose. That seemed to work, at first, but now the liquid that was in her legs is settling up in her belly. She looks like she is having twins (She tries to keep her sense of humor about it). She is losing about 450 ml a day of fluid from her leg (where it is draining) but her belly is still really large and hard in some areas. She is so very uncomfortable and cannot do anything for more than 15 minutes (standing, sitting, laying down) because the pressure is so uncomfortable for her. She has a lot of trouble urinating because of the pressure of everything on her bladder. Her doctor said she will now always have this belly and that there is nothing really they can do for her...I just can't believe that! So I'm hoping (really not, because this is such an awful thing to go through) that someone has had this experience and may have some words of wisdom, comfort, whatever for me. I lost my father to kidney cancer 5 years ago and now this...it's really hard for me to face that I will loose my mother now sooner rather than later. I try to remain positive but it is hard. I, along with my wonderful husband, are her caregivers and I want to make sure that we are doing all that we can for her. Any advice is appreciated. God Bless you all! :)Shaleen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2005 Report Share Posted November 1, 2005 Shaleen, I am so sorry your mom is suffering so much. I do not have any answers here. Hopefully someone here will be able to help you. I just wanted to let you know that you and your mom are in my Prayers. Ingrid > > Hello All! > I have been reading many your posts for a while now and they have > been helpful and supportive in dealing with this horrific disease. > What a wonderful community this group is! I am now in need of some > specific help and I hope someone out there can provide me with some > guidance. > My mom Sharon, who is 62, was diagnosed with Stage IV Colon Cancer > on 5/24/05. Her colon cancer tumors have spread to her entire pelvic > area (ovaries and uterus) and some lymnodes. She originally had 19 > radiation treatments coupled with a small amount of chemo. She has > just completed her 4th straight chemo treatment (she gets 48 hours > continuous every 2 weeks.) Her treatment protocal is for 12 total > treatments. After the 3rd treatment she developed what I learned > (because the doctors didn't identify it right away) was lymphedema > because her tumors are pressing on her lymph nodes. This made her > legs swell like tree trunks and very painful and > constantly " weeping " . She was given antibiotics and put into > compression hose. That seemed to work, at first, but now the liquid > that was in her legs is settling up in her belly. She looks like she > is having twins (She tries to keep her sense of humor about it). She > is losing about 450 ml a day of fluid from her leg (where it is > draining) but her belly is still really large and hard in some > areas. She is so very uncomfortable and cannot do anything for more > than 15 minutes (standing, sitting, laying down) because the > pressure is so uncomfortable for her. She has a lot of trouble > urinating because of the pressure of everything on her bladder. > Her doctor said she will now always have this belly and that there > is nothing really they can do for her...I just can't believe that! > So I'm hoping (really not, because this is such an awful thing to go > through) that someone has had this experience and may have some > words of wisdom, comfort, whatever for me. > I lost my father to kidney cancer 5 years ago and now this...it's > really hard for me to face that I will loose my mother now sooner > rather than later. I try to remain positive but it is hard. I, > along with my wonderful husband, are her caregivers and I want to > make sure that we are doing all that we can for her. Any advice is > appreciated. > God Bless you all! > :)Shaleen > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2005 Report Share Posted November 1, 2005 Shaleen: It sounds like her abdomen needs to be drained. I have met 2 patients with these symptoms, one of whom has primary ovarian cancer. She looks like she is nine months pregnant. She is going to an interventional radiologist here at St. 's Hospital in Santa and has catheters that drain the ascites (name of fluid) from her. I have stage 4 colon cancer and had this when I was trying to recover from the surgery on my colon, liver, etc. I have fluid drained from my abdomen and lungs. Each time they went into my lungs, as many as 4 liters of fluid came out. Eventually they put a catheter into my liver area and I had a bag on the outside that had to be drained and measured daily. This lasted for 2 or 3 months (my chemo brain at work). It is not acceptable to say they can do nothing. I am no expert on this and I am sure you will find others with more experience. However, your story reminds me so much of this lady who is at my oncologist's office and the draining has given her such relief. She was ready to give up until that happened. Prayers for you and mom, in California In a message dated 11/1/2005 11:59:21 AM Pacific Standard Time, shaleenesq@... writes: Hello All! I have been reading many your posts for a while now and they have been helpful and supportive in dealing with this horrific disease. What a wonderful community this group is! I am now in need of some specific help and I hope someone out there can provide me with some guidance. My mom Sharon, who is 62, was diagnosed with Stage IV Colon Cancer on 5/24/05. Her colon cancer tumors have spread to her entire pelvic area (ovaries and uterus) and some lymnodes. She originally had 19 radiation treatments coupled with a small amount of chemo. She has just completed her 4th straight chemo treatment (she gets 48 hours continuous every 2 weeks.) Her treatment protocal is for 12 total treatments. After the 3rd treatment she developed what I learned (because the doctors didn't identify it right away) was lymphedema because her tumors are pressing on her lymph nodes. This made her legs swell like tree trunks and very painful and constantly " weeping " . She was given antibiotics and put into compression hose. That seemed to work, at first, but now the liquid that was in her legs is settling up in her belly. She looks like she is having twins (She tries to keep her sense of humor about it). She is losing about 450 ml a day of fluid from her leg (where it is draining) but her belly is still really large and hard in some areas. She is so very uncomfortable and cannot do anything for more than 15 minutes (standing, sitting, laying down) because the pressure is so uncomfortable for her. She has a lot of trouble urinating because of the pressure of everything on her bladder. Her doctor said she will now always have this belly and that there is nothing really they can do for her...I just can't believe that! So I'm hoping (really not, because this is such an awful thing to go through) that someone has had this experience and may have some words of wisdom, comfort, whatever for me. I lost my father to kidney cancer 5 years ago and now this...it's really hard for me to face that I will loose my mother now sooner rather than later. I try to remain positive but it is hard. I, along with my wonderful husband, are her caregivers and I want to make sure that we are doing all that we can for her. Any advice is appreciated. God Bless you all! :)Shaleen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2005 Report Share Posted November 1, 2005 Dear Shaleen, I am so very sorry that you lost your father to kidney cancer and now you are watching your mom go through these debilitating treatments. Thank you for telling us about your mom. She is in our prayers for sure. This is the first time I am hearing this term lymphedema. But knowing that edema means swelling, I went to the " Dictionary of Cancer Terms " to see if they had something about lymphedema. http://www.nci.nih.gov/dictionary/ lymphedema (LIMF-eh-DEE-ma) A condition in which excess fluid collects in tissue and causes swelling. It may occur in the arm or leg after lymph vessels or lymph nodes in the underarm or groin are removed or treated with radiation. Shaleen, you did not mention any surgery to remove your mom's tumors, so this lymphedema could have happened after the radiation in the groin area. Logically we could think that If lymphedema occurs after radiation, maybe when your mom's radiation is finished her lymphedema may lessen and go away. Does the doctor say that she will be taking radiation for the rest of her life? I certainly hope not. Praying your mom will feel better very soon. God bless. ~Deb from KS shaleenesq wrote: Hello All! I have been reading many your posts for a while now and they have been helpful and supportive in dealing with this horrific disease. What a wonderful community this group is! I am now in need of some specific help and I hope someone out there can provide me with some guidance. My mom Sharon, who is 62, was diagnosed with Stage IV Colon Cancer on 5/24/05. Her colon cancer tumors have spread to her entire pelvic area (ovaries and uterus) and some lymnodes. She originally had 19 radiation treatments coupled with a small amount of chemo. She has just completed her 4th straight chemo treatment (she gets 48 hours continuous every 2 weeks.) Her treatment protocal is for 12 total treatments. After the 3rd treatment she developed what I learned (because the doctors didn't identify it right away) was lymphedema because her tumors are pressing on her lymph nodes. This made her legs swell like tree trunks and very painful and constantly " weeping " . She was given antibiotics and put into compression hose. That seemed to work, at first, but now the liquid that was in her legs is settling up in her belly. She looks like she is having twins (She tries to keep her sense of humor about it). She is losing about 450 ml a day of fluid from her leg (where it is draining) but her belly is still really large and hard in some areas. She is so very uncomfortable and cannot do anything for more than 15 minutes (standing, sitting, laying down) because the pressure is so uncomfortable for her. She has a lot of trouble urinating because of the pressure of everything on her bladder. Her doctor said she will now always have this belly and that there is nothing really they can do for her...I just can't believe that! So I'm hoping (really not, because this is such an awful thing to go through) that someone has had this experience and may have some words of wisdom, comfort, whatever for me. I lost my father to kidney cancer 5 years ago and now this...it's really hard for me to face that I will loose my mother now sooner rather than later. I try to remain positive but it is hard. I, along with my wonderful husband, are her caregivers and I want to make sure that we are doing all that we can for her. Any advice is appreciated. God Bless you all! :)Shaleen __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2005 Report Share Posted November 1, 2005 I hesitated to jump in here on this because I will be gone tomorrow for my 4 month cancer checkup....yikes:(...and may not be able to check my email until Thursday... But I have lymphedema, first from the removal of lymph nodes in my pelvic area due to uterine cancer, second the damage done to the remaining nodes from the radiation, and then, as if that were not enough, I lost more nodes when parts of my small bowel and colon were removed!!! I have had wonderful results from physical therapy massage. have your mother ask her doctor about prescribing it. nancy j ---------- No virus found in this outgoing message. Checked by AVG Anti-Virus. Version: 7.0.344 / Virus Database: 267.12.6/151 - Release Date: 10/28/2005 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2005 Report Share Posted November 1, 2005 , Good Luck and Prayers for clean healthy results. Love, Ingrid > > I hesitated to jump in here on this because I will be gone tomorrow for my 4 month cancer checkup....yikes:(...and may not be able to check my email until Thursday... > > But I have lymphedema, first from the removal of lymph nodes in my pelvic area due to uterine cancer, second the damage done to the remaining nodes from the radiation, and then, as if that were not enough, I lost more nodes when parts of my small bowel and colon were removed!!! > > I have had wonderful results from physical therapy massage. have your mother ask her doctor about prescribing it. > > nancy j > ---------- > > No virus found in this outgoing message. > Checked by AVG Anti-Virus. > Version: 7.0.344 / Virus Database: 267.12.6/151 - Release Date: 10/28/2005 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2005 Report Share Posted November 1, 2005 >>>, Good Luck and Prayers for clean healthy results. Love, Ingrid >>>> Oh thank you Ingrid:) I think about everyone here knows what the " night before checkup day " jitters are about. All of you here give me so much strength to draw upon, thank you for letting me be here. nancy j ---------- No virus found in this outgoing message. Checked by AVG Anti-Virus. Version: 7.0.344 / Virus Database: 267.12.6/151 - Release Date: 10/28/2005 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2005 Report Share Posted November 1, 2005 If it is lymphedema, it cannot be drained. It is in the lymph channel system and has to be trained to learn to move through new channels. For instance, my pelvic lymph nodes are so damaged and or missing, that I am to never have injections of any kind below the waist. My lymph system could never handle dispersing the medication into my system. You have to be very careful to avoid insect bites, nicks from shaving, etc below the waist....in order to avoid infections. Your lymph system cannot flush out the toxins and poisons like it used to. I never knew just how important the lymphatic system was until this happened to me. nancy j ---------- No virus found in this outgoing message. Checked by AVG Anti-Virus. Version: 7.0.344 / Virus Database: 267.12.6/151 - Release Date: 10/28/2005 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2005 Report Share Posted November 1, 2005 In a message dated 11/2/2005 12:10:49 AM Eastern Standard Time, tsalagi@... writes: If it is lymphedema, it cannot be drained. It is in the lymph channel system and has to be trained to learn to move through new channels. For instance, my pelvic lymph nodes are so damaged and or missing, that I am to never have injections of any kind below the waist. My lymph system could never handle dispersing the medication into my system. You have to be very careful to avoid insect bites, nicks from shaving, etc below the waist....in order to avoid infections. Your lymph system cannot flush out the toxins and poisons like it used to. I never knew just how important the lymphatic system was until this happened to me. nancy j ---------- WOW, .... I never knew that either!!! Lots of hugs and prayers, Donelle Caregiver to Glenn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2005 Report Share Posted November 2, 2005 Wow neither did I . Thanks for that information. Jolene Re: Lyphedema Questions If it is lymphedema, it cannot be drained. It is in the lymph channel system and has to be trained to learn to move through new channels. For instance, my pelvic lymph nodes are so damaged and or missing, that I am to never have injections of any kind below the waist. My lymph system could never handle dispersing the medication into my system. You have to be very careful to avoid insect bites, nicks from shaving, etc below the waist....in order to avoid infections. Your lymph system cannot flush out the toxins and poisons like it used to. I never knew just how important the lymphatic system was until this happened to me. nancy j ---------- No virus found in this outgoing message. Checked by AVG Anti-Virus. Version: 7.0.344 / Virus Database: 267.12.6/151 - Release Date: 10/28/2005 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2005 Report Share Posted November 2, 2005 >>>Oh , thank you so much for posting. It's so good to get connected with someone who has experience with this. My mom has not had any surgery, so my guess is that her problems developed because of the radiation. I will speak with her doctor specifically about prescribing it. I try to massage my mom's legs with lotion everynight because I can see how bumpy, red and painful they have gotten for her. Sending you " good results " thoughts your way today...thanks again! >>>> You need to go online and do a search for " lymphedema massage " . You must do it right or you can do more harm than good. The nodes you must get to working doubletime are the ones in her upper body now. Under her arms, by the collarbone, all along both sides on ribs and especially one of the main gathering spots which is just about perfect center of her abdomen. She needs to do alot of " belly breathing deeply " . Make that belly rise and fall, it massages the lymph channel in that area. You have to start at the top of her body ... ALL massage is very gentle!!!!!....wake up the lymph nodes from top working all the way down to her toes. Then you start working back up to gentle massage the fluid into the open channels. Lots of info on the web, but she really needs a good 6 week session with a professional lymphedema massage therapist. Most insurance companies will cover it. Go with her, learn how to do it yourself. Prayers for you both!! Blessings, J (I'm 51...no spring chicken:) ---------- No virus found in this outgoing message. Checked by AVG Anti-Virus. Version: 7.0.344 / Virus Database: 267.12.7/156 - Release Date: 11/2/2005 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2005 Report Share Posted November 3, 2005 > > Hello All! > I have been reading many your posts for a while now and they have > been helpful and supportive in dealing with this horrific disease. > What a wonderful community this group is! I am now in need of some > specific help and I hope someone out there can provide me with some > guidance. > My mom Sharon, who is 62, was diagnosed with Stage IV Colon Cancer > on 5/24/05. Her colon cancer tumors have spread to her entire pelvic > area (ovaries and uterus) and some lymnodes. She originally had 19 > radiation treatments coupled with a small amount of chemo. She has > just completed her 4th straight chemo treatment (she gets 48 hours > continuous every 2 weeks.) Her treatment protocal is for 12 total > treatments. After the 3rd treatment she developed what I learned > (because the doctors didn't identify it right away) was lymphedema > because her tumors are pressing on her lymph nodes. This made her > legs swell like tree trunks and very painful and > constantly " weeping " . She was given antibiotics and put into > compression hose. That seemed to work, at first, but now the liquid > that was in her legs is settling up in her belly. She looks like she > is having twins (She tries to keep her sense of humor about it). She > is losing about 450 ml a day of fluid from her leg (where it is > draining) but her belly is still really large and hard in some > areas. She is so very uncomfortable and cannot do anything for more > than 15 minutes (standing, sitting, laying down) because the > pressure is so uncomfortable for her. She has a lot of trouble > urinating because of the pressure of everything on her bladder. > Her doctor said she will now always have this belly and that there > is nothing really they can do for her...I just can't believe that! > So I'm hoping (really not, because this is such an awful thing to go > through) that someone has had this experience and may have some > words of wisdom, comfort, whatever for me. > I lost my father to kidney cancer 5 years ago and now this...it's > really hard for me to face that I will loose my mother now sooner > rather than later. I try to remain positive but it is hard. I, > along with my wonderful husband, are her caregivers and I want to > make sure that we are doing all that we can for her. Any advice is > appreciated. > God Bless you all! > :)Shaleen > I'm wondering if your mom is suffering from ascites rather than a movement of the lymphedema from her legs to her abdomen. Ascites is caused by liver failure. It's very common for colon cancer cells to spread to the liver and cause these problems. Might be worth checking with you mom's docs on this. Ascites can be drained to make the person more comfortable. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2005 Report Share Posted November 3, 2005 She had a ct scan two weeks ago and it didn't show anything in the liver, just tumors continuing to shrink (thank God!) We were concerned b/c do to various complications that seem to arise during her chemo treatments, she had to be off of chemo for 5 weeks prior to that. Her 48-hr stays in the hospital for chemo are never that...on average 7 days and the last trip to the " resort/spa " , as we have taken to referring to the hospital, was 16 days and boy was she itching to get out of there last Saturday. I will however mention this to her doctor, now that I have learned about this from you folks. She is scheduled to do her 5th treatment on Monday. Thank you for all your advice,suggestions and prayers, they are all so very appreicated. :)Shaleen > > > I'm wondering if your mom is suffering from ascites rather than a > movement of the lymphedema from her legs to her abdomen. Ascites is > caused by liver failure. It's very common for colon cancer cells to > spread to the liver and cause these problems. Might be worth > checking with you mom's docs on this. Ascites can be drained to > make the person more comfortable. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2005 Report Share Posted November 3, 2005 > Thank you ...yes, I have notice that I have to be sure to have a very tender touch with her these days when I do massage her legs. I will do this research as you suggested...certainly don't want to do her more harm than good. Take care... :)Shaleen > You need to go online and do a search for " lymphedema massage " . > You must do it right or you can do more harm than good. > The nodes you must get to working doubletime are the ones in her upper body now. Under her arms, by the collarbone, all along both sides on ribs and especially one of the main gathering spots which is just about perfect center of her abdomen. She needs to do alot of " belly breathing deeply " . Make that belly rise and fall, it massages the lymph channel in that area. > > You have to start at the top of her body ... ALL massage is very gentle!!!!!....wake up the lymph nodes from top working all the way down to her toes. > Then you start working back up to gentle massage the fluid into the open channels. > > Lots of info on the web, but she really needs a good 6 week session with a professional lymphedema massage therapist. Most insurance companies will cover it. > Go with her, learn how to do it yourself. > > Prayers for you both!! > > Blessings, > J (I'm 51...no spring chicken:) > ---------- > > No virus found in this outgoing message. > Checked by AVG Anti-Virus. > Version: 7.0.344 / Virus Database: 267.12.7/156 - Release Date: 11/2/2005 > > > Quote Link to comment Share on other sites More sharing options...
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